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Understanding the Themes of Disability Discourse Through Reddit Understanding the Themes of Disability Discourse Through Reddit
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Brandon Palonis
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Understanding the Themes of Disability
Discourse Through Reddit Comments
by
Brandon Palonis
A Thesis Submitted in Partial Fulfillment of the
Requirements for the Degree of
Master of Science in Software Engineering
Supervised by
Dr. Mohamed Wiem Mkaouer
Department of Software Engineering
B. Thomas Golisano College of Computing and Information Sciences
Rochester Institute of Technology
Rochester, New York
April 2021
The thesis “Understanding the Themes of Disability Discourse Through Reddit Comments”
by Brandon Palonis has been examined and approved by the following Examination Com-
mittee:
Dr. Mohamed Wiem Mkaouer
Assistant Professor
Thesis Committee Chair
Dr. Yasmine El-Glaly
Assistant Professor
Dr. J. Scott Hawker
Associate Professor
To my parents and brother, thank you for your bottomless love and support.
To Brian and Aizaz, could not have done this without you guys.
To Navdeep, you have enabled me to work this hard and make it this and I appreciate
everything you do to inspire me.
∞
i
Acknowledgments
This work was extremely difficult and I would not have survived without the help and
support of those around me.
To my advisors, Dr. Mohamed Miem Mkaouer and Dr. Yasmine El-Glaly, I could not
have done this without your direction and expertise. Dr. Mohamed’s expertise on machine
learning methods and functions allowed the bulk of the work of this paper to be
completed. Dr. Yasmine’s expertise in accessibility helped to refine the qualitative
analysis and categorization of the topics provided. Both professors were always extremely
understanding and kind and I appreciate their contributions heavily. I am very grateful to
be paired with two extremely intelligent and helpful advisors.
Lastly to my friends, family, and Navdeep: thank you all for the support you provided in
some way or another. Nothing that I have ever accomplished has felt whole without the
support and care of you all.
ii
Abstract
With the advent of internet forums, sharing opinions in a public sphere has never been
easier, especially for those facing marginalization in their communities. Forums offer a
neutral, semi-anonymous space wherein people may feel more compelled to share intimate
details about the characteristics of their lives. This paper focuses on internet forums related
to disabilities, specifically those found on Reddit, and uses Latent Dirichlet Allocation
(LDA) to extract topics from the corpus of 3 subreddits: r/Blind, r/ADHD, and r/Disability.
The features are then put into key term groups that are defined by a key phrase. This created
category taxonomy is then used to qualitatively analyze the topics of discussion themselves
through the posts and how these topics change over time.
iii
Contents
Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . i
Abstract . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ii
1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
1.1 Motivation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
1.2 Research Questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
2 Related Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
2.1 Self-Expression for People with Disabilities . . . . . . . . . . . . . . . . . 4
2.2 Analysis of Data Present on Social Media . . . . . . . . . . . . . . . . . . 6
3 Study & Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
3.1 Dataset . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
3.1.1 Subreddit Selection . . . . . . . . . . . . . . . . . . . . . . . . . . 8
3.1.2 Cleaning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
3.1.3 Topic Extraction . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
3.1.4 Initial Categorization of Topics . . . . . . . . . . . . . . . . . . . . 11
3.1.5 Refining of Topics . . . . . . . . . . . . . . . . . . . . . . . . . . 14
3.1.6 Taxonomy Verification . . . . . . . . . . . . . . . . . . . . . . . . 18
3.2 Qualitative Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
4 Results & Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
4.1 Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
4.1.1 Research Question 1 - What topics are discussed on r/Blind, r/dis-
ability, and r/ADHD? . . . . . . . . . . . . . . . . . . . . . . . . . 24
4.1.2 Research Question 2 - Which topics receive the most interaction
over time per subreddit? . . . . . . . . . . . . . . . . . . . . . . . 87
4.2 Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99
4.2.1 Software as a Solution to Problems Posed by Disability . . . . . . . 99
iv
4.2.2 Software Engineering for People with Disabilities . . . . . . . . . . 100
4.2.3 Where Software is Insufficient . . . . . . . . . . . . . . . . . . . . 101
5 Limitations & Future Work . . . . . . . . . . . . . . . . . . . . . . . . . . 103
5.1 Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103
5.2 Future Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 104
6 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105
Bibliography . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106
1
Chapter 1
Introduction
1.1 Motivation
Social media websites are generally very public-facing for users; on Facebook, for instance,
a created profile for a user usually would show personal information about them such as
their name, location, and family members. Reddit, however, is a pseudonymous social
media website, wherein users create an account that does not directly reveal their identity
outright, but may feature personalized information for a given user. Such features like the
type of subreddits the account is following may reveal their interests, but generally would
not be immediately recognizable to someone unfamiliar with the person who made the
account. Reddit, being pseudonymous, generally can allow for more intimate discussion
between users who do not have to fear that they are giving out too much identifiable public
information.
Previous work has focused on studying the sociological factors of posting on Reddit:
such as the discussion of potentially stigmatizing topics as they relate to a specific group
(parents) [1], the analysis of post interactions over time and behavioral trends of conversa-
tions and posts [10, 3], and the impact and design of Reddit’s moderation tools and how
those affect subreddit behavior [5]. Reddit conversations can be insightful to understanding
the discourse between specific types of users or groups of users.
This research investigates the themes of topics discussed on disability-related subred-
dits and seeks to categorize and label common topics of discussion. These categories are
then used to qualitatively analyze comments and posts to understand different factors about
2
discussion of disabilities in online forums. By reading and categorically defining the topics
of conversation on these subreddits, this research seeks to use the resulting analysis of the
lives and discussions of people with disabilities in order to support these people and feature
their words, ideas, and struggles directly. Furthermore, by using algorithmic methods to
generate topics of conversation based on the posts, millions of posts can analyzed quickly
and then the generate topics can be manually refined to be used for greater understanding
and qualitative analysis.
Three subreddits were chosen for this purpose: r/Blind
1
, r/disability
2
, and r/ADHD
3
. These specific subreddits were chosen for being communities built around either the
concept of general disabilities (r/Disability) or for being a support system and place of
knowledge based around a specific disability (r/Blind, r/ADHD). r/Blind and r/ADHD were
also chosen for featuring disability discussion relating to ”visible” (physical) or ”invisible”
(mental) disabilities.
1.2 Research Questions
• RQ1: What topics are discussed on r/Blind, r/disability, and r/ADHD? First, this
study aims to uncover topics of discussion between the three subreddits. This ac-
complished by running a Latent Dirichlet Allocation (LDA) model over the corpus of
subreddits, using this taxonomy to label a dataset of comments, followed by manual
analysis of the generated and tagged topics to create a final taxonomy of categories
of discussion. The dataset is then labelled with categories to allow for qualitative
analysis of the themes present in comments.
• RQ2: Which topics receive the most interaction over time per subreddit? Next, this
study seeks to understand which topics of discussion receive the most interaction per
year in each subreddit. This is accomplished by charting the number of categories
1
https://reddit.com/r/Blind
2
https://reddit.com/r/disability
3
https://reddit.com/r/adhd
3
per subreddit per year and using this information to understand how topics changed
from year to year or from subreddit to subreddit overall.
4
Chapter 2
Related Work
The focus of this section is literature pertaining to two main areas relating to the obser-
vations and discussions of online comments of people with disabilities. First, literature
analyzing self-expression online through Reddit discussions. Utilizing Reddit comments
as a form of sociological study is becoming an increasingly popular topic. The second
area focuses on analysis of data present on social media and the utilization of this data for
the purposes of information and understanding. The research of this paper is attempting
to bridge the gap between these two concepts by utilizing and analyzing data from people
with disabilities on social media for the purposes of understanding their self-expression and
forms of discussion.
2.1 Self-Expression for People with Disabilities
Morris et al. [7] use a survey to measure for what purposes do people with disabilities
use their mobile devices. The survey asks people to describe their disabilities and then
asks people with disabilities to describe the features they use most on their smartphone
such as texting, internet, or social media. The paper reports percentages of smartphone
activities paired to disabilities and shows the common smartphone activities performed by
people with 8 different types of disabilities. Social Media was reported to be a common
smartphone activity by roughly 67% of participants. The activity that placed the highest
was ”Texting” with an average of 87% of people with disabilities reporting it as a common
smartphone, followed closely by ”Internet” with an average of 81% of people.
5
Raghavendra et al. [9] perform study with 9 youth from rural Australia by providing
them with assistive technology and training them to better to use social media. The goal
of this research was to help increase social performance and satisfaction with their perfor-
mance. They say that youth with disabilities report issues trying to use social media due
to limited literacy and lack of knowledge of assistive technologies. Researchers posit that
increased social media participation by people with disabilities can strengthen social net-
works and help with future employment. They say that pervious studies focused only on
urban youth and did not focus on rural youth, which experience a unique set of challenges
in ways that urban youth do not, such as higher levels of socioeconomic disadvantage which
helps to put the lack of assistive technologies and technical literacy into perspective.
Hollier [6], a researcher with a visual impairment recounts his life experiences and his
participation in organizations like ”Web for All” that focus on accessibility issues. Hollier
recounts from personal experiences interviewing people with disabilities that he believes
social media enables people with disabilities to have a ”fair go”, which is Australian slang
for ”equal opportunity.” He recounts a hearing-impaired woman using Facebook to better
socialize at parties, LinkedIn helping a blind man find work, and helping someone with
motor disabilities find coupons for food delivery to make their lives easier. Hollier believes
that the ability to talk to devices like Amazon Echo or Google Home as well contributes
to helping people with disabilities live with equal opportunity. Ultimately Hollier says that
accessibility cannot happen if people do not come together to facilitate it and dedicate their
time to perfecting it.
Wang et al. [12] explore how people with disabilities in China are able to access infor-
mation. They say that important information needed by people with disabilities is spread
over a variety of online platforms. They use a semi-structured survey to understand how
people with disabilities in China feel about their access to helpful information related to
assistive technology and disability information. Through the responses to the survey they
present ways in which they feel that the information services for people with disabilities
can be improved, particularly through integration of information services and social media
6
platforms like WeChat and QQ.
2.2 Analysis of Data Present on Social Media
The main study that inspired the work of this paper was the previously mentioned study on
the observations of parenting discourse in parenting subreddits. Ammari et. al [1] utilized
comments and posts from three parenting-related subreddits and analyzed the differences
in topics and posting behavior between throwaway and regular Reddit accounts. A throw-
away account is one created for the purposes of making posts that cannot be traced back to
a main account. According to Ammari et al., throwaway accounts are used more often to
discuss serious or stigmatizing topics than a regular account. By studying what throwaway
accounts in parenting subreddits are discussing versus their main account counterparts, the
authors are able to understand what topics of discussion are potentially stigmatizing or diffi-
cult for parents to be able to ask in a normal public online forum such as Facebook. Ammari
et al. creates a taxonomy of themes discussed by throwaway accounts and uses this taxon-
omy to understand the differences in themes between throwaway and non-throwaways.
Gilbert [5] carries out semi-structured interviews with moderators and community mem-
bers of r/AskHistorians and analyzes a highly-upvoted post on the subreddit. She uses this
data to understand how the rules and moderation affects users and moderators. According
to Gilbert, the moderation team of r/AskHistorians is one of the more reputable on the web-
site, and she analyzes how the community combats misinformation among its ranks with
moderation techniques.
August et al. [2] wanted to understand if the language used on r/science, the most
popular science-based subreddit, created a language barrier that might possibly prevent a
layman from being able to interact and participate in discussions. Researchers trained a
language model on r/science and used that model on other subreddits to examine the cross
entropy to see if the language of r/science differs meaningfully from the language used
on other subreddits. They also examined the language used by users that regularly post
in r/science versus users that post a minimal number of times to see if new users truly do
7
experience a language barrier on the subreddit.
Thukral et al. [10] and Choi et al. [3] both use datasets of Reddit comments and perform
statistical methods on them to gain insight into the nuances of Reddit discussions, but each
have different goals in mind. Thukral et al. focus on studying the interaction of posts over
time, categorizing posts based on these interaction patterns, and determining focal points
of posts that are interacted with. The ultimate goal of Thukral et al. is to create and present
a framework for identifying behavioral trends in Reddit discussions. Meanwhile, Choi et
al. model Reddit conversations based on three important factors: volume, responsiveness,
and virality. Choi et al. use these factors to understand engagement within Reddit threads
and how user behavior determines those three aforementioned factors of engagement.
Vachher et al. [11] also perform a sociological study of behavioral trends on Reddit,
but do so in a unique way. During April 2017, Reddit had a crowdsourced pixel drawing
page called r/place that was available for a 3-day period. The purpose of r/place was that
individual users can place one pixel per 5 minutes, with the ultimate goal being to have
communities come together to create crowdsourced art. Researchers observed the conflicts
between communities in r/place, conflicts here being dueling pixel placements, in an effort
to ascertain the community and culture of the involved subreddits.
Peng et al. [8] observe conversations on r/depression to seek in the creation of a tech-
nical writing assistance bot. The purpose of the bot is to either assess a user’s comment
or recommend examples for a user’s comment to help discussions in online mental health
communities. The ultimate goal of the bot is to help improve user confidence and satis-
faction with their comments and to better steer users towards helpful or supportive mental
health discussion.
Eberhard et al. [4] crowdsource a dataset of movie recommendations from r/MovieSug-
gestions. They use this dataset in the development of recommendation algorithms for
movies based on a user’s preference for other movies and also genre preferences.
8
Chapter 3
Study & Methodology
3.1 Dataset
3.1.1 Subreddit Selection
The chosen subreddits for this study were r/ADHD, r/Blind, and r/disability. All three
subreddits directly feature disability discussion, education, perspectives, and support from
users who report to have disabilities, guardians or authority figures such as parents and
teachers, or those who may be disability-adjacent. As of April 2021, r/ADHD is the largest
subreddit of the three by a wide margin, featuring 1.2 million members, which contrasts
with r/disability’s members count of 25.6 thousand and r/Blind’s 12.8 thousand members.
The Reddit comments from all 3 subreddits used in the dataset were downloaded using
Google’s BigQuery
1
by utilizing an existing dataset of Reddit comments. The downloaded
comments were dated from January 1st, 2015 to December 31st, 2019. Initially 2020 was
to be included as well but was not available in in the provided BigQuery dataset at the
time of download. Only comments containing upvote scores of at least 1 were taken, the
rationale that if a comment was negatively rated then it would not represent typical accepted
community discourse. Table 3.1 shows the initial comment counts downloaded from each
subreddit before the cleaning process begin, in total 1,722,769 Reddit comments from the
three subreddits were downloaded.
1
https://cloud.google.com/bigquery
9
Pre-Cleaning Number of Comments Per Year
ADHD Blind Disability
2015 154,912 2,227 8,399
2016 203,075 5,765 8,706
2017 275,110 6,599 12,283
2018 411,227 8,957 19,073
2019 554,417 19,428 32,541
Total 1,598,741 43,026 81,002
Table 3.1: Comment counts prior to cleaning
3.1.2 Cleaning
Before feature extraction could begin, the data had to first be cleaned of comments that
were considered unhelpful towards the overall goal of understanding major themes of dis-
cussion. For the initial round of cleaning, the decision was made to remove comments
where the length of total characters in the comment was less than 25. In addition, any com-
ments that appeared as ”[deleted]” or ”[removed]” were also removed from the dataset.
Whenever a user either deletes their account or a comment made by their account, com-
ments appear as [deleted]. If a moderator removes a comment on Reddit, the comment will
appear as [removed]. Both [deleted] and [removed] made up sizable portions of the initial
downloaded dataset. The reason for comment length being 25 or less initially was to try
and remove short, nondescript comments: single emoticons or comments containing only
general pleasantries like ”thank you”, ”you’re welcome”, or variations on words like ”Yes”
or ”Okay.” This also removed comments consisting mostly of a single emoticon or series
of emoticons.
To test the initial cleaning dataset, a sample of subreddit data was taken and manually
reviewed. 60 comments from each year of each subreddit, totaling 900 were reviewed. It
was found that, while the initial cleaning process had successfully removed many com-
ments, many that were irrelevant or incoherent managed to remain such as exaggerated
replies like ”thank you!” containing enough exclamation points or emoticons to bypass the
10
Post-Cleaning Number of Comments Per Year
ADHD Blind Disability
2015 138,805 2,059 7,369
2016 182,451 5,114 7,733
2017 246,022 5,913 10,886
2018 364,904 8,065 16,659
2019 484,003 17,290 28,307
Total 1,416,185 38,441 70,954
Table 3.2: Comment counts post cleaning
25 character threshold, or general replies like ”Thanks, I’ll remember to!”. After examina-
tion of the dataset, the decision was made to up the character limit to 35 and to take into
account the comment upvote/downvote ratio, if a comment was under the limit but received
at least 2 upvotes it was kept, otherwise it was discarded. After these new constraints were
decided, the cleaning process began again. Upon second review of the data, many types of
the aforementioned irrelevant comments had been removed. After both rounds of cleaning,
a total of 197,189 comments were removed, for a final total of 1,525,580 comments, which
can be seen in Table 3.2
3.1.3 Topic Extraction
After the dataset was effectively cleaned, the next process was to extract features from
the data so that topic categorization could begin. The Latent Dirichlet Allocation (LDA)
2
model was used to extract topics from the subreddits. LDA considers each comment
as Document and considers the subreddits a corpus. LDA is run over the comments to
generate a group of ten key terms that are determined by an associated probability to be
apart of a topic cluster. To allow LDA to be run, each comment being fed into into LDA
must first be tokenized into individual words along with having any symbols removed. The
comments are then lemmatized to allow words with different forms to be counted as one,
2
https://github.com/RaRe-Technologies/gensim/blob/develop/gensim/
models/ldamodel.py
11
Figure 3.1: The process that each Reddit post went through to be examined by LDA.
such as ”read” and ”reading.” Finally, ”stopwords” are removed from the comments, which
are common words such as articles, pronouns, and words like ”it” or ”is”. In addition to the
aforementioned stopwords, more were found as LDA was repeatedly run over the corpus.
The process of running LDA over a post can be seen in figure 3.1
In total LDA was run over the whole corpus ten times in total to continually tune the
results and add more stopwords to the matrix of stopwords. LDA was run to generate 10
topics per year of posts from each subreddit, generating 150 topics topics total in 15 topic
files. Each topic file was ordered highest to lowest by coherence score calculated by LDA,
where the coherence score is a measure of the coherence of the words used by LDA to
describe the topic. The closer the value is to 0, the higher the word coherence. An example
of an LDA output can be seen in figure 3.2.
3.1.4 Initial Categorization of Topics
Once LDA had generated a satisfactory output for each year of each subreddit, the next
step was to assign initial topic names to the list of key terms for each topic. This was
done by manually reviewing each list of topics generated by LDA and approximating the
best general term for each group of words. Some topic lists ended up having the same
topic twice, by nature of having too similar of an output for a meaningful difference to
12
Figure 3.2: A typical output of LDA after analyzing a corpus. The values associated with
a given word correspond to the probability of that word appearing in that topic. Topic
coherence is the negative value at the bottom. This particular coherence score is close to 0
which means it displays relatively high topic coherence.
be ascertained between the two topics, such as the case in figure 3.3. Some topics had
low coherence by virtue of having of 4 or less seemingly unrelated words or had a low
coherence score, in this case a low coherence score is considered to be the range of -8 to
-11, such as the example in figure 3.4. Coherence scores and related words varied greatly
by subreddit by year. The example in figure 3.4 shows a generated topic with both less
than 4 unrelated words and a low coherence score. Figure 3.5 shows another topic deemed
incoherent but with a comparatively higher coherence score than the incoherent topic in
figure 3.4.
After the initial categorization, a total of 31 unique topic labels were created with 9
other topics determined to be incoherent, which can be seen in table 3.3. Of these 31
topics, the largest was Perspective, which appeared 20 times total and appeared at least
once in every single topic list generated by LDA for every year of every subreddit. Fur-
thermore, Perspective also appeared no lower than fifth in every list and appeared first
in 6 total lists. Perspective commonly contained words like ”people”, ”think”, ”know”,
”feel”, ”life”, ”someone”, ”disability”, ”help”, ”others”, and ”need”, words that when
paired together seemed to indicate a topic based around either wanting others to under-
stand something about the poster or about the poster’s possible disability, offering up their
13
Figure 3.3: An example of topics being too similar to be able to definitively separate them
into distinct categories.
Figure 3.4: An example of a topic being too incoherent to be able to given a topic name.
The coherence score here is one of the lowest of the generated topics.
14
Figure 3.5: Another example of an incoherent topic, this one has a comparatively much
higher coherence score, but the words are vague enough to be nondescript in the nature of
this topic.
own perspective. Furthermore, r/disability’s own description indicates that the sub con-
tains ”...perspectives pertaining to individuals with disabilities”, which contributed to the
definition of that particular category. The second-largest category, Advice, appeared in all
but 3 files of topic clusters. Advice also repeatedly appeared among the top categories for
all subreddits, which given that the subreddits all represented communities of people with
disabilities, it would make sense that one of the most common topics found is about advice
or help on managing or living with disability.
3.1.5 Refining of Topics
After the initial creation of topic categories, it was found that 10 of the 31 topics only ap-
peared once, and many had similar or overlapping terms that made coherence with other
categories somewhat difficult, sometimes only one word would separate categories. The
decision was made to refine the categories by merging smaller categories together to form
comparatively larger categories where similar key words from similar, but separate, cate-
gories could sit under a single topic. Through this refinement process, 8 new categories
were formed. All merged and new categories feature unique words from the subcategories
that make them up, duplicates were removed. The words contained in each category are all
generated by LDA only. The new categories are as follows:
15
• Medical System & Medicine -This category is combined from: Medical System (9
count), Medication (6 count), and Health (1 count). Medical System and Medicine
frequently shared words such as ”doctor”, ”med”, or ”adderall”. Furthermore, med-
ication appeared overall less than medical system did. The Health category only ap-
peared once, but had common words with medical system: such as ”brain”, ”dopamine”,
”body”. Because both categories were found to have overlap with medical system,
and medical system appeared the most often of the three, the decision was made to
merge all three into one category.
• Financial & Social Services -This category is combined from: Finances (4 count),
Social Services (5 count), and Housing (1 count). Finances and Social Services both
overlap with words like ”ssi”, ”ssdi”, and ”benefit”. Because both topics centered
around specific legislation regarding money for people with disabilities (ssi, ssdi),
with Finances also containing more general financial words such as ”income” or
”money” and Social services containing specific financial social programs such as
”nif”, ”state”, and ”case” the decision was made to merge them. Housing contained
words like ”apartment”, ”housing”, and ”house” and was also merged due to housing
also being a major financial consideration for most.
• Work & Education -This category is a combination of Work (11 count) and Ed-
ucation (8 count). Work and Education were two of the more common categories
overall. ”Work”, ”job”, and ”task” were the most common indicators that pointed
to a cluster being centered around work, but school-related categories also occasion-
ally contained the same words. Work and Education also frequently contained words
about timing, i.e. ”time”, ”year”, ”month”, ”week”. Because of the overlap between
the two, they were merged. The words discussing time frames, however, were moved
over to the ”Life Organization & Routines category, which is discussed below.
• Support -This category is a combination of Asking for Advice (or Advice, 12 count)
16
and Support Network (3 count). Advice was the second-most common category (be-
hind Outsider Perspective) and frequently contained words indicative of discussion
or asking questions, such as ”message”, ”question”, ”comment”, ”concern”, and ”an-
swer”. Support Network was much less common and contained words such as ”feel”,
”sorry”, and ”answer”. There is slight overlap between the two as well as the fact
that the process for both asking for advice and seeking support are similar concepts,
and the fact that Support Network appeared less often than advice but with similar
words, so the decision was made to merge them.
• Accessibility -This category features the most combination out of them all. 6 smaller,
similar categories were combined, resulting in Accessibility becoming the largest of
all categories in terms of unique keywords. 6 categories were combined: Physi-
cal Disability (6 count), Building Accessibility (1 count), Accessible Technology
(6 count), Media Accessibility (1 count), Internet Browsing (4 count), and Read-
ing (5 count). These categories were merged for all having similar, accessibility-
related word groups. Physical Disability contained words like ”accessible”, ”pain”,
”wheelchair”, ”cane”, and ”chair”, Accessible Technology contains words like ”text”,
phone”, ”access”, ”braille”, ”screen”, ”reader”, ”audio”, and ”nvda”, Reading con-
tained words like ”braille”, ”headset”, ”book”, ”nvda”, ”audio”, and ”accessible”.
All three of the aforementioned categories feature word concerning accessible tech-
nologies, such as wheelchairs, nvda, and audio. There was enough overlap in accessibility-
related words to justify merging Reading, Physical Disability, and Accessible Tech-
nology.
Two of the categories, Building Accessibility and Media Accessibility, appeared once
total. Building Accessibility features overlap with Physical Disability, containing
words like ”wheelchair” and ”accessible”. Media Accessibility features overlap with
Accessible Technology such as ”screen”, ”text”, ”video”, and ”voiceover”. Since
both were already Accessibility-related categories and both featured overlap within
Accessibility already, both were merged into the Accessibility topic. Finally, Internet
17
Browsing was also merged in, due to the fact that the category featured overlap with
Accessibility Technology and Media Accessibility, and because Internet Browsing
also contained words like ”app”, ”profile”, ”blog”, and ”firefox” so it too was added
to allow for more technology-related words in the category to expand out the acces-
sibility technology.
• Social Situations -This category features 2 combinations of previously-merged cat-
egories, Perspective and Relationships. Initially, there existed a Perspective category
that was created from all Outsider Perspective categories merged into one. Outsider
Perspective was the largest counted category at 20 total instances, and appeared no
lower than the top 5 categories in every file, even when it appeared twice. The name
was changed from ”Outsider Perspective” to ”Perspective” to reflect that the topic
should more generally relate to the perspective of a person with disability who may
also be sharing a perspective, not just an outsider. r/disability’s subreddit descrip-
tion even describes the subreddit as ”News, resources and perspectives pertaining
to individuals with disabilities.”, which helped influence the decision to rename the
category as well.
The second merged category, Relationships, featured a combination of two similar,
smaller categories: Dating (1 Count) and Relationships (6 Count). Relationships
featured words such as ”relationship”, ”feeling”, ”love”, ”friendship”, and ”sexual”,
whereas the only instance of Dating contained words such as ”tinder”, ”app”, and
”people”. Since the topics of dating and relationships tend to go hand in hand, the
decision was made to merge the two into a single ”Relationships” category.
Finally, upon review of the two new categories, the decision was made to merge
Relationships and Perspective to make a combined ”Social Situations” category. The
rationale for combining both is that both Relationships and Perspective contained
valuable insight as to the social relationships of people with disabilities, romantically
and otherwise, so the decision was made to merge them. The Parenting category (1
18
count) was also added because familial relationships and parenting perspectives are
also contained under the much larger ”Social Situations” topic.
• Life Organization & Routines -This category features a combination of Life Or-
ganization (5 count), Routines (4 count), and Eating Habits (1 count). Life Organi-
zation contained words like ”sleep”, ”eat”, ”exercise”, ”task”, and ”start”. Routine
contained similar words such as ”sleep”, ”drink”, ”morning”, and ”caffeine”. Both
categories featured overlap, and similar concepts of eating, sleeping, and scheduling,
which is why they were merged. Eating Habits only appeared once and featured sim-
ilar words to both previous categories, such as ”water”, ”coffee”, ”diet”, ”appetite”,
and ”breakfast”, so the decision was made to merge it into the new category as well.
• Disability -The final merged category ”Disability” was not merged from separate,
smaller categories, and instead was combined piecemeal from words within the other
merged categories that directly related to disability such as ”adhd”, ”blind, ”disabil-
ity”, and ”deaf.” This category was created to better understand direct discussion
about disabilities from each subreddit and to understand possible instances of dis-
ability overlap, such as posts discussing co-morbidity of disabilities or conditions.
Table 3.4 contains the final created taxonomy along with the key words that make up each
category.
3.1.6 Taxonomy Verification
To verify the created taxonomy, the dataset was programmatically labelled utilizing the
taxonomy. Every comment was reviewed and the word frequencies of keywords pertaining
to each category were counted. 100 random comments were sampled for each category
contained within the taxonomy. 800 comments total were manually reviewed and for each
comment, it was determined whether or not that comment was correctly labelled. The
calculated accuracy across all 8 categories was found to 74%. The category with the highest
individual accuracy was Accessibility at 84% , and the category with the lowest individual
19
accuracy was found to Social Situations at 66%. All category accuracy measures can be
found in Table 3.5.
3.2 Qualitative Analysis
Once the taxonomy had been fully developed and the dataset labelled, the next step was to
perform qualitative analysis to answer the previously-mentioned research questions. Qual-
itative analysis was performed by taking a manual, random sample of 132 posts belonging
to a singular tagged topic distributed among the subreddit posts. Each post was analyzed
by reading the full post thread and all comments on Reddit itself and then categorizing the
post according to a theme. Each sample for each topic contained 66 posts from r/ADHD
and 33 posts from r/disability and r/Blind each. The sample for r/ADHD was doubled so
as to accurately represent the larger amount of posts on the subreddit, while r/disability
and r/Blind were smaller and relatively close in count compared to r/ADHD. If a post was
found to be deleted when viewed on Reddit, then the post was viewed on Removeddit, a
Reddit archive containing all comments and posts deleted or removed from a post. In rare
occurrences if a deleted post could not be found and no insight could be gained from the
replies to the post, then the post was re-sampled. Posts were tagged with themes or major
ideas found within each and then grouped together by similar themes to determine how
discussion of those themes may or may not relate. Posts were read until saturation was
reached. If enough posts were read but it was found to be difficult to determine major top-
ics of conversation still, then 50 more randomly selected posts were added and read until
saturation was reached. The process for qualitative analysis can be seen in 3.6 and ?? The
full counts of all measured categories can be found in tables 4.1, 4.2, and 4.3.
21
Initial Categories, Pre-Refinement
Topic Label Number of Appearances
Perspective 20
Advice 12
Work 11
Incoherent 9
Education 8
Medical System 8
Frustration 6
Medication 6
Relationships 6
Accessible Technology 6
Physical Disability 6
Life Organization 5
Social Services 5
Reading 5
Routine 4
Finances 4
Internet Browsing 4
Guidance 3
Travel 3
Support Network 3
Dress 2
Recreation 2
Information Sharing 1
Parenting 1
Focus Techniques 1
Eating Habits 1
Health 1
Dating 1
Media Accessibility 1
Music 1
Building Accessibility 1
Housing 1
Table 3.3: Topic counts after initial categorization
22
Final Category Taxonomy
Topic Label Associated Words
Medical System & Medication brain, drug, dopamine, stimulant, effect, med, re-
ceptor, body, amphetamine, doctor, help, psychia-
trist, medication, appointment, adderall, taking, mg,
vyvanse, dose, symptom, anxiety, depression, prob-
lem, treatment, prescription, insurance, pill, phar-
macy, hospital, medical, record, activity, heart, rate,
pressure, eye
Finances & Social Services benefit, ssdi, case, state, ssi, money, pay, income,
medicaid, program, amount, apartment, housing,
house, lawyer, social, ssa
Work & Education work, school, job, college, class, high, training, work-
ing, week, interview, emailed, inform, interviewer, re-
cruiter, company, description, manager, math
Support question, comment, rule, wiki, reddit, anyone, re-
ply, message, answer, contact, action, thread, bot,
totesmessenger, submission, link, compose, concern,
form, friend
Accessibility steam, text, phone, image, access, nvda, braille,
reader, headset, app, bluetooth, cane, game, screen,
audio, accessible, video, site, program, html,
voiceover, mode, profile, technology, accessibility,
code, button, youtube, link, platform, wheelchair,
chair, driver, bus, parking, car, pain, service, dog,
room, bathroom, driving, location, gps, animal, har-
ness, music, beta, language
Social Situations people, think, know, feel, say, thought, way, even, life,
want, use, might, completely, others, someone, per-
son, issue, better, live, feeling, self, relationship, faq,
tab, love, dating, date, best, tinder, skin, friendship,
sexual, hand, intention
Life Organization & Routines day, sleep, time, eat, hour, exercise, food, bed, night,
day, task, minute, drink, caffeine, morning, start,
book, week, put, eating, coffee, weight, diet, appetite,
breakfast, note, list, pant, shirt, jean, faith, shoe
Disabilities adhd, disorder, deaf, condition, nystagmus, blind, dis-
ability
Table 3.4: Final topic taxonomy after refinement
23
Measured Accuracy of Topics After Sampling
Medical System & Medication 74%
Financial & Social Services 83%
Work & Education 70%
Support 75%
Accessibility 84%
Social Services 66%
Life Organization & Routines 77%
Disability 69%
Total Accuracy 74%
Table 3.5: Measured Accuracy of all topics after sampling and verification.
Figure 3.7: 2/2 This flowchart constitutes the second half of the process of qualitative
analysis. This begins after a post has been given a theme like shown in 3.6
24
Chapter 4
Results & Discussion
4.1 Results
Each research question was answered using the previously-mentioned qualitative analysis
techniques. Direct quotes from users are presented, with each user’s name anonymized
according to the following style: UserXY, where X is the first letter of the subreddit to
which the comment belongs (A, B, or D for ADHD, Blind, and Disability, respectively)
and Y is an integer value representing a unique identifier for the comment which starts at 1
and is incremented by 1 for each quote from a user of a particular subreddit. For instance,
the first quote references a UserD1, which means that the comment is from r/disability and
is the first comment from that subreddit to appear.
4.1.1 Research Question 1 - What topics are discussed on r/Blind,
r/disability, and r/ADHD?
• Medical System & Medication - Topics relating to the medical system and to medi-
cation were a common theme among all three subreddits. Among comments labelled
as ”Medical System & Medication” several themes were analyzed: discussion of
doctors or hospitals, medical explanations of disability or conditions, discussion of
medication, and discussion of treatment or symptoms of a disability or condition.
– Doctors and Hospitals - When discussing hospitals, users tended to discuss
different aspects of hospital visits. Users asked about the difficulty of getting
25
around a hospital while being blind and received replies from others either dis-
cussing their own histories with hospitals and how they got used to them as a
blind person. Users reportedly posting from hospitals talked about anxiety re-
lated to waiting for diagnoses. Users also gave recommendations to others on
how to pass time in a hospital and how to prepare for extended stays.
When the subject of doctors were discussed, users mentioned doctors that they
felt were notable for either positive or negative reasons. One user lists their
positive experience with a doctor in the Office of Veteran Affairs because said
doctor was paralyzed which made the poster feel better about their own dis-
ability. Other users, however, discussed their issues with doctors ranging from
issues about misdiagnoses, incomplete or unsent medical records which inhib-
ited disability benefit applications, and general difficulties within their medi-
cal system. One user, UserD1, explains their despair over repeated suffering
within the medical system partially due to their misdiagnosis and mistreatment
by a doctor that they had previously visited. UserD1 claim that the doctor had
yelled at them when, after extended treatment, a diagnosis could not be made.
Due to this mistreatment by the doctor, they say that hospital visits are now
difficult for them and they cannot receive the help they need as easily.
”My ONLY beef with the hospital is their treatment of me based on
his [the doctor’s] say-so...This one doctor is the only one I feel I have
to have some recourse against. They...treated me for five days (takes
3-5), and when he didn’t see a problem on day 6, YELLED at me. The
ERs are great. They treat me. Then they admit me, expecting me to
get the same treatment upstairs, and that’s where the trouble begins.
Last time, for example, the hospitalist wouldn’t treat me because he
wanted my GI [Gastroenterologist] to. That’s when I sobbed in pain
for 10ish hours...My GI consult showed up after 23 hours and my pain
26
management consult never showed up...The nurse even called Medi-
care to see if I could go AMA and go back to the ER. Of course, they
denied it. For literally 40 years (surgery age 5, first hospitalization age
10) they [hospitals] have treated me the same way. Now, I am treated
like above...” (UserD1 - 12/23/2019)
– Medical Explanations of Disability - Medical-related posts on r/Blind and
r/disability contained several posts that attempt an explanation of disabilities
and disability-related concepts such as medical records. No medical-related
posts from r/ADHD were determined to be about medical explanations. Posts
from r/Blind focus on describing types of visual impairments in detail. Users
explain their personal visual impairment and go into details of their limited
ability to see or lack thereof. One user of r/Blind, UserB1, clinically explains
their visual impairment, the process of losing their site, and how that user was
able to adapt over time to their visual impairment.
”I have a spot of reasonably clear vision...Instead of black, I see thick
static kind of like an old TV receiving a weak signal. I can see some
color and movement through the static, but little detail. What amazes
me most us how my brain deals with it. Shortly after I first got sick
last year, I struggled to do a lot of things. As my brain got used to
processing input through my damaged optic nerves, I found I could
function better because my brain got better at ignoring my blind spots
and the static.” (UserB1, 02/06/2018)
On r/disability, medical explanations focused on helping users understand the
correct way to approach their medical records and medical history during their
attempts to apply for disability benefits. Users ask for help regarding the content
of their medical records and for getting doctors to create statements address-
ing a disability that can be used to apply for benefits. In one instance, a user
27
posts about a possible legal issue regarding a mistake in their medical records.
This post receives a reply from UserD2, who claims that they read medical
records all day, and gives a few pieces of advice for users regarding their medi-
cal records and possibility of legal action for incorrect medical records.
”As someone who reads medical records all day - errors on medi-
cal records is incredibly common, especially with electronic records
(EMR). With EMR history, exam, and other information tends to just
get copied over from one visit to the next. I guarantee you that if you
looked at the records from all your providers you are going to find er-
rors...Honestly your best bet is to just explain to any future providers if
they ask about it. If you go into a new doctor with this long story about
how that doctor was wrong, and that you sued, and you swear you’re
not a drug abuser - that is going to make any future doctor hesitant to
see you, especially if they are going to prescribe narcotics, benzos, etc.
Your record is documented that you have an MMJ prescription, so any
doctor with common sense is going to be able to see the connection. If
a new doctor asks all you have to say is ’that was a miscommunication
in my records. I have been prescribed MMJ but my provider coded
it as illegal drug use. I don’t use any substance illegally’” - (UserD2,
10/11/2017)
– Medication - Mediation as a topic was most commonly discussed on ADHD,
although the topic did occasionally appear in the other two subreddits. Users
discuss many aspects of medication such as which medication they feel is cor-
rect for them, appropriate dosing instructions, specific testimonials regarding
effects or side effects of medications, and getting doctors to properly diagno-
sis others and recommend a medication. Users discussed specific medications
at length, discussing the benefits and drawbacks of medications. Conflicting
testimonials are given regarding the effectiveness of drugs meant for treatment
28
of ADHD such as Ritalin, Adderall, Focalin, and Vyvanse. One user describes
they feel Adderall was the perfect drug for them, while another user complained
that they could not eat while on the drug. Several users who have taken multiple
ADHD drugs also relay how they felt each drug worked for them and why they
may have stopped taking it. In one post, a user espouses wanting to stop treat-
ment with Adderall because they feel dependant on the drug and emotionless
when taking it. This post receives a reply from UserA1. In their reply, UserA1
describes their history with different medications and reasons why that they had
stopped taking them. Dependence, side effects, and cost all were discussed as a
reason that UserA1 moved from one medication to another.
”Stopped Ritalin because of the negative side effects and lost insur-
ance. Stopped wellbutrin because my young dumb mind thought ”hey
my depression is cured!” Stopped Dexedrine recently because [i’m] in
OP’s [the original poster’s] boat where i cant do anything without it.
No energy etc etc.” (UserA1, 01/16/2018)
– Treatment and Symptoms For discussion of treatment and symptoms, posted
tended to focus on helping users find physical or psychological treatment, dis-
cussing one’s one experience with said styles of treatment, discussing symp-
toms as they relate to treatment, and discussing or recommending medical pro-
fessionals that help with specific styles of treatment. In posts, users discussed
the difficulties in making appointments with health professionals such as psy-
chiatrists, therapists, and general physicians, with the express purpose of either
discussing symptoms with these professionals to begin disability treatment such
as medication or cognitive-behavioral therapy. Several users share personal
anecdotes of treatment that they have received, discussing medical procedures
that they have been through or describing discussions with their therapists or
psychiatrists. One user, UserB2, discusses issues they had with repeated treat-
ment for their visual impairment. They talk about the symptoms they were
29
experiencing and about attempting to undergo multiple treatments and diag-
noses for their condition from several doctors, ultimately lamenting that they
feel doctors had failed to identify or treat the condition in time which allowed
it to worsen to full blindness.
”I was born with glaucoma and lost vision in my left eye very early,
and since the pressure in my right eye was hard to control I knew
that eventually I would go fully blind, however when it started to fi-
nally happen nobody was prepared for it, and that includes 3 glaucoma
specialists who thought I was lying when I complained about loss of
contrast perception, because [apparently it is a common misconcep-
tion]...among ophthalmologists that glaucoma affects the peripheral
vision first, and since my pressure was fine, my field of view remained
unchanged, and both my cornea and lens were clear the only possible
explanation was that I was lying...A year later a cataract was diagnosed
and immediately blamed for the loss of contrast, and I was advised to
do nothing about it until I was completely blind. Another year later
my pressure started to increase, so I had surgery to implant a glau-
coma valve which was supposed to free me from medication, though 3
months after the surgery my pressure was already back to its previous
levels. Eventually my contrast perception got so bad that I was having
trouble walking on the street, so I decided to have the cataract surgery,
which left me seeing everything extremely blurry and didn’t restore
my contrast perception, leading one of the doctors to finally conclude
that it was probably due to optic nerve damage...I had another surgery
to control the pressure...but it was already too late...I wish doctors had
been quicker to figure out that my optic nerve was getting damaged
and attempted the surgeries as early as possible to avoid blindness, but
unfortunately due to the aforementioned misconception coupled with
30
their inability to actually observe the back of my eyes since my pupils
don’t dilate I ended up going blind.” - (UserB2, 02/14/2018)
• Financial & Social Services - For the topics of Financial and Social Services, the
major areas of discussion related to the cost of accessibility devices or medicine,
financial aid social programs meant for disability such as Supplemental Security In-
come
1
(SSI) and Social Security Disability Insurance
2
(SSDI), legal issues regarding
financial and social programs, and tips for responsibly handling money and budget-
ing.
– Cost of Accessibility Devices and Medicine - Users discussed the costs of
finding both medicine, this topic particularly appeared a lot in relation to r/ADHD,
and accessible technologies, this topic appeared more in relation to r/Blind.
Users discussing the cost of medicine talked of paying for co-pays that insur-
ance would not completely cover. Users also suggested that others check their
health plans and benefits so that others could understand what their plans would
or would not fully cover. One user posted about receiving a high $150 co-pay
for their Vyvanse prescription. Another user, UserA2, replied to this post with a
link to a financial aid program offered by the company that distributed Vyvanse
at the time for co-pay assistance. UserA2 also discusses some of the restrictions
of the co-pay assistance system that the company offers.
”...Shire (the company that makes Vyvanse) has a patient assistance
program called Shire Cares, where if you qualify, you can get Vyvanse
for free. Your deductible has to be over $1000 or your copay has to
be over $50, which with this change, would be. You[r] income also
has to be below a certain amount, I think like no more than 300% of
the poverty threshold. Buy the application is pretty simple, and costs
1
https://www.ssa.gov/ssi/
2
https://www.ssa.gov/benefits/disability/
31
nothing to do, so it might be worth checking out. Here is the link.” -
(UserA2, 12/03/2016)
Users discussing the cost of accessible technologies tended to focus on dictation
software. On one post a user asked members of r/Blind to provide them with
an illegal copy of Job Access With Speech (JAWS), a screen reading program
meant for users with visual impairments. The post was unfortunately removed
because the act of asking for or distributing downloaded copies of items are
illegal, but the post did receive a response from UserB2 empathizing with the
user and trying to provide alternatives to JAWS, however they do directly men-
tion that one might need several programs to replicate what JAWS is capable of
doing.
”I understand...Jaws cost[s] a hell of a lot...I found a site that has some
alternatives . I am not saying it is as good as jaws. You might need
multiple programs, that can do the job that Jaws does.” - (UserB2,
10/29/2016)
– Financial Aid - The most common topic of discussion related to financial aid
centered around U.S. disability benefit programs such as SSI, SSDI, and Medi-
care, however some posts also discussed disability benefit programs in Canada.
Users repeatedly shared opinions urging users struggling financially to apply
for Medicare or Medicaid depending on their situation. Users discussed the
difficulties they faced in trying to apply for disability services and the legal
challenges that they had to go through in order to be accepted into an assistance
program. Users talked of the restrictions of financial assistance programs and
tried to help others determine if they qualified. Some users discussed need-
ing financial assistance in order to attend higher learning institutions. An issue
among users who received disability benefits was the low amount provided and
posts highlighted issues with budgets and poverty. In one post a user, UserD3,
discussed landing a job that was accommodating to their disability, but they
32
struggled on whether they should take it because the money the job offered
would have been over the limit that SSDI allowed. UserD3 discusses not want-
ing to lose their SSDI benefits after prolonged period of waiting and refers to
a ”poverty trap” that surrounds SSDI recipients, given that their SSDI payment
amounts are determined by what UserD3 describes as an arbitrary calculation.
”I’m not going to risk losing SSDI after waiting so long...This has
been a truly eye-opening experience discovering the ’poverty trap’ that
SSDI recipients are thrown into. I want to be productive and do some-
thing, but an arbitrary calculation of how much I could earn will most
likely keep me out of the work force totally. I suppose I’d be a fool
to turn down $2800 per month for SSDI not working, only to work
in a position for less money and zero income security.” - (UserD3,
12/26/2019)
– Legal Issues - Users frequently discussed needing lawyers for help applying
to or appealing for disability benefits. Users discussed the necessity of lawyers
when applying for benefits, others are repeatedly urged to hire a lawyer to guide
them through the process and to make sure they have help. One user, UserD4,
discusses the trials and tribulations of not only just applying for benefits, but
maintaining benefits after they have been initially accepted. They say the pro-
cess takes years to even be accepted and usually must be repeated every three to
five years afterwards. UserD4 states that if they could they would work full time
instead of dealing with the Social Security Administration (SSA) and expresses
frustration at the entire system.
”As someone who receives social security disability benefits and has
gone through (and continues to go through) the process...[i]t’s very
difficult to get benefits even when you’re clearly disabled and can’t
maintain full employment.
The process of applying for benefits and receiving a decision takes
33
years, when you factor in several levels of appeals. And in most cases
they review your case every three to five years and basically go through
the process all over again. It is a lot of work and a huge amount of
stress.
If I was able to work full-time, I would much rather do so than deal
with the...bureaucratic nightmare that is the Social Security Adminis-
tration. Everyone I’ve ever known who has dealt with disability or any
public benefits feels the same...[T]he system is so incredibly compli-
cated that it’s a nightmare for everyone on both sides of the process.”
- (UserD4, 12/16/2019)
– Tips for Budgeting and Money Handling - The topic of tips for money-
handling seemed to appear most frequently in r/ADHD, except for an instance
where an accessibility technology for money-handling was discussed in r/Blind.
Users on ADHD talked off issues with impulse buying and being unable to visu-
alize the amount of money they regularly spend. Replies to posts about impulse
spending were met with empathy and suggestions for financial applications and
other methods of organizing money. One user, UserA3, replied to one of these
posts giving several suggestions of applications and ideas for the post author
to help maximize their budget and financial planning. They suggest multiple
financial applications, spreadsheets, and even concepts like splitting up money
into multiple accounts or simply hiding a credit card to prevent impulse buying.
”I’ve heard good things about Mint and You Need A Budget; they
seem like fairly accessible apps to help you get started on finance
management. I tried using a budget app for a while (Money Brilliant,
fwiw) but it didn’t do the things I needed...I’ve started keeping a very
barebones budget spreadsheet myself that sorta works... so long as I
remember to update it. Whiiich I don’t always. Splitting your money
34
up into different accounts is a good idea, as well as deleting login cre-
dentials so it’s not as easy to automatically purchase stuff. Keeping
your credit card in a seperate far-away room might be enough to dis-
suade you....If your spending is really bad and you have someone in
your life that you really really trust, you could have them control your
finances for you. My brother and I are very close and I trust him with
my life so I let him take control of my savings for a while...It really
helped curb some of my impulsive spending habits....Of course you
might not need to let them control all your money; you could just ask
for their help setting up a budget, or for them to help you stick to the
budget...There’s a few different options, you might need to try a few
before you find one that really works for ya.” - (UserA3, 01/18/2018)
In one instance in r/Blind, a user posted asking about hypothetical apps for the
blind that others might find useful. Users replied suggesting, among other ideas,
a paper money counting app to help track physical finances. One user who
replied to the post, UserB3, mentions that their son has a device that performs
this task already, describing how the device is able to read the denominations
on bills and read this back to the user. One user replies to this technology,
interested in the device because they typically pay with card but would like
to start spending physical money to better track their finances. UserB3 then
provides this reply with a link to the device.
”My son has a thing that you stick the corner of the money into and
it reads the denomination. It buzzes x amount of times per denomina-
tion. I think it’s one buzz, two for five, three for ten and so on...It’s
about the size of a USB reader.” - (UserB3, 10/06/2016)
• Work & Education - For Work & Education the common topics of discussion were
accommodations for disability in school or the workplace, sharing of education his-
tory, frustrations around the difficulty of working or finding work with a disability,
35
and explanations and questions regarding how employment affects benefits for dis-
ability
– Accommodations - A major theme of discussion between all three subreddits
was the discussion of accommodations for disability within a school or a work-
place. A repeated idea throughout comments relating to accommodations was a
discussion of the difficulty of receiving accommodations for work or for school.
r/Blind users talked of the difficulties of working with every day work tools and
lamented that they were unable to utilize certain office necessities effectively
such as a printer. In one post, UserB4 explains that they have difficulty just
using the printer at their office job due to the lack of adequate features avail-
able for blind users. They say that, despite braille options being available, the
options are merely static buttons while the touchscreen controls which they
cannot see regularly change, making the braille options weak by comparison.
Furthermore, UserB4 states that the text-to-speech options on the available on
the printer are unhelpful and slow.
”There are a number of different systems that assist blind users at the
operation panel of the device, but I’ve always thought they seem sub-
optimal. This question is mostly directed at completely or nearly-
completely blind individuals...Obviously for remote access such as
printing from a PC or accessing the system via a web interface, the
existing assistance tools for computers do the job without additional
special consideration...As an example of a system for the operation
panel, there are braille overlays, but these reduce the functionality by
reducing the feature set significantly since the screen is dynamically
updated for sighted people, but static for the braille interface.
Another example is text to speech, but it is very slow and cumbersome
given the large number of options and features available.
Speech control is another option to avoid the issue of giving input on a
36
touchscreen, but that still requires a way for the device to let you know
what is possible to begin with and so still suffers from the same issue
as text to speech.” - (UserB4, 10/10/2016)
In r/disability, users also discussed inaccessibility issues in the workplace, such
as trouble working with items such as keyboards and discussion of job inter-
view accommodation. Users relayed difficulty in asking for accommodations
for interviews, with some fearing that the act of asking for accommodations
alone may disqualify them from a workplace. One post features a user sharing
a blog post entitled ”As soon as I stopped ticking the ’disabled’ box, I got inter-
views.” UserD5 explains their own thought process on the matter, saying that
they would notify the place of employment for accommodations only if they
were called back for interview, but they would not tick the ’disabled’ box on
applications. They claim that by telling potential employers of a disability after
said employer has called for an interview that they may prevent a stigma from
developing.
”In my opinion, in that situation I’d drop the news on them early
enough that they can’t be shocked or caught unawares but not early
enough that stigma and discrimination have an opportunity to take
root - I’d apply for jobs, not tick the box, and when I got a call for
an interview then I’d let them know in a matter of fact way that I’m a
wheelchair user and that I would need access to be able to attend the
interview.” - (UserD5, 10/31/2017)
Besides work, other testimonials and discussions of accommodations, or lack
thereof, revolved around accommodations for schools and colleges. Users also
routinely discussed instances of mistreatment, abuse, accusations of lying about
a disability, and outright refusal from school faculty and staff to accommodate
for disability. Users from all 3 subreddits detail different life stories regard-
ing a lack of accommodations for schooling. UserD6 relays their struggle as a
37
teacher removes them from a project group for them after an extended hospi-
tal stay. After UserD6 discusses this with their school’s disability office, they
hear nothing for 2 months, until they get an angry email from their department
telling them that without the class grade from the aforementioned professor,
they cannot graduate.
”I have dysautonomia, a neurological disability. I came to my school’s
disability office before starting my graduate program to get set up.
They found that I have a disability that qualifies for ADA protection,
and wrote up a disability plan that was distributed to my professors.
In November, I briefly went into the Critical Care Unit with heart
and balance concerns. I had a professor who would not return my
emails after multiple attempts. I guess I should mention I was in the
CCU over Thanksgiving break, so no harm- no foul; I didn’t miss any
classes. Well, fast forward to the day before my final group presenta-
tion...I get a message from the professor telling me my group didn’t
feel comfortable having me in the presentation because I had been in
the hospital: he was dropping me from the group, don’t come in to
the final, and you’ll do a brand new, alternate project...I went to the
Disability Services director at school to ask if he thought that was rea-
sonable. He basically said, don’t do anything; he’d look into it and get
back to me. Now 2 months pass... I get an angry email from the de-
partment program manager threatening that I can’t graduate because I
haven’t finished my class. I take the exam final the next day. Three
more weeks go by... I haven’t received a grade. When I asked about it
to the program manager, I wasn’t even given a chance to explain my-
self. I was just told, ’The instructor didn’t even want to offer you an
assignment. I had to pull some strings and you should be grateful.’” -
(UserD6, 04/11/2016)
38
UserD7 describes a similar experience of having accommodations rejected by
a professor even after working with their law school’s disability services for
accommodations.
”...I recently started law school and was just denied accommodations
for testing by one of my professors. He had his reasons but my ques-
tion is, aside from getting in touch with disability services, is there
anything else I can do to fix this? My understanding was that since
all my documentation/testing was processed and ok’ed by disability
services that I was in the clear, but my prof unilaterally denied me
accommodations for his class.” - (UserD7, 7/02/2015)
– School History - The subject of School History was found most commonly in
r/ADHD posts, however a few instances of the subject could be found in r/Blind.
School History in this cases refers to a given user documenting their time in
either schools or college in any fashion for the purposes of either sharing or
advice. The most common types of discussion around school history on r/Blind
was users asking for recommendations of schools or organizations for higher
education, schools with adequate accommodations, and soliciting advice for
navigating school life. In one post, a user asks others to list their experiences
attending School for the Blind. UserB5 discusses their experience within a
School for the Blind, describing how they feel that blind kids should instead
be mainstreamed into public schools because UserB5 feels that schools for the
blind do not prepare students properly for life or the working world.
”I went to a school called Lindon Lodge...Putting blind people in one
school instead of mainstream is a bad idea. It doesn’t show the real
world and does not prepare you for life. I learnt how to write and read
braille, grade 1 and a little of grade 2, but I had to teach myself how
to use screen reading software and got bullied quite a lot. I’d highly
recommend mainstream schools. Back in my day as far as I know; that
39
wasn’t really an option but now disabled people are going to normal
schools.” - (UserB5, 06/12/2018)
In r/ADHD, discussion of school history very often included testimonials from
people with ADHD claiming that the disorder helped to make school difficult
for them. Users describe under-performance in classes, feelings of failure, feel-
ing that they had to work harder to stay at the same pace as others, missing
exams and tests, difficulty retaining information and inability to get work done.
UserA5 created a post asking for advice for completing their advanced degree,
feeling that they might have ADHD after a professor asked them to be tested af-
ter showing signs such as inability to sit still and a tendency to talk quickly and
ramble. UserA5 also talked of their inability to get work done, focus properly,
and repeatedly turning in assignments late.
”I have always had problems completing my work, I have never done
my class required readings and I hand in every assignment late...Well...
now I am in post-grad, I am taking up one of only 11 spots in my
university’s Clinical Psychology Program...Every comment about my
client interactions is about me talking too much or too fast or fidget-
ing...I was always able to scrape by in honours...but now I am strug-
gling. In clinical there are no late penalties- it’s pass/fail and if I fail
three times, I get kicked out. I have failed twice...I try so hard to force
myself to do work but it’s like some days no matter how hard I try,
I just can’t. It’s like I need to wait for a day when my brain is ac-
tually awake to even start something. Some days it’s so bad I can’t
even read. I’ll sit there reading the same thing over and over because
my mind is simply not paying attention to what the words mean- I’ll
hear them being read in my head, but they’ll have no meaning...It’s
just so frustrating. I know I could do a lot better if I could just be orga-
nized...I have started so many unfinished personal projects and handed
40
in so many unfinished pieces of work. I know I could do better...if I
actually used all of my given time.” - (UserA5, 07/22/2017)
– Difficulty Surrounding Work - Posts and comments discussing difficulties
surrounding work could be found on all subreddits, focusing on the struggles
working while having a disability. In r/Blind and r/Disability, users repeatedly
talked about issues being taken seriously in work environments and issues with
being able to find steady work due to either issues with their disability, or a
misunderstanding of their disability by potential employers. Many users do
describe working or having job history as well, but a common refrain is the dif-
ficulty of finding work with a disability, even among users who currently have
a job. UserB6 succinctly describes the difficulty of applying for work with a
disability and the challenges people with disabilities face.
”A good 99 percent of the time, the problem isn’t the job itself. It’s
getting in the door. You maybe get one interview. Then the employer
realizes you’re disabled, and...suddenly, silence. They never get back
to you. You don’t get the job. If you’re not going to just start your own
business, the best advice I can offer is: network...I’ve done everything
from freelance tech support to web development to copy-editing to
writing (especially ad copy and template articles for SEO purposes) to
cryptocurrency to podcast transcription to QA testing. Being a jack of
all trades seems to have worked well, for me.” - (UserB6, 5/07/2018)
The issue of driving is mentioned several times as well. Many users with dis-
abilities describe difficulties driving or talk of working in places accessible by
public transport for ease of use. UserD8 posted their message on r/disability
asking for advice on finding accessible work that can accommodate their mild
cerebral palsy. They stress that they do not drive and are in need of a job that is
accessible by walking or bus.
”...I’m...graduating college in May and I have mild CP [Cerebral Palsy].
41
I’m pretty physically proficient but I don’t drive. I’m looking for jobs
but the public transit in my area is lacking. I’m having a hard time
finding somewhere close enough that i can either walk to or get to
a bus stop. I’ve considered work at home jobs (telecommunications,
web stuff) but that’s not really my preference. Basically, has anyone
here been through the transition from guided student to independent
adult. Note: Moving is not in the cards rn” - (UserD8, 4/20/2016)
On r/ADHD, difficulties surrounding work focused less on finding work and
more about the issues that symptoms of ADHD cause in a work environment.
Users talked of problems with adhering to work schedules and showing up on
time, getting work done on time, having to sit still for long hours at a desk,
and inconsistent quality in their work. Several users discuss a marked improve-
ment in their work or work habits after receiving treatment through medication.
UserA6 discusses the extreme anxiety they experience while attempting to get
their tasks done at work and how their inability to get work done occasionally
results in poor self-esteem. They also discuss how, despite knowing that the
works needs done and attempting to start it, they are repeatedly unable and feel
overwhelmed at the prospect.
”It makes me feel so...worthless.. And the end of each shift at work I
have about 30-45 minutes of documentation to do... At first something
will happen and I won’t get it done, and I say I’ll do it when i get home,
but I don’t, and then every shift after I just can’t make myself do it, till
I have to do hours worth all at once..This time is the worst, I need to
do hours worth literally right now, cause it has to be done before the
office opens in two hours.... I haven’t slept yet because I need to do it,
but sitting down to do it puts me on the edge of a panic attack...I have
to get a different job, this ones schedule is all over the place, and I need
a set schedule... But I finally have insurance so I need to get my teeth
42
fixed first, and I need to set an appointment to get medicated again...
But I’ve had insurance for 8 months and haven’t done it yet so I’m
probably not going to...I’m gonna do my paperwork...then work from
3-9...Even though thinking about starting makes me want to throw up.
If I didn’t really really like the company I work for...I’d shut off my
phone and never go back, it wouldn’t be the first time I’ve done that to
a job.” - (UserA6, 12/14/2017)
– Work & Disability Benefits - Work and disability benefits was a topic exclu-
sively discussed on r/disability. Users discuss issues trying to work while being
on disability and having that work affect their benefits in some way. Users
frequently mention needing to work on top of maintaining disability benefits
because they are unable to work full time in some fashion but need supplemen-
tal income as many mention that relying solely disability benefits is insufficient
for cost of living. In one case, a user makes a post asking about how to get off
of disability benefits because they feel that they would be better served working
with a disability then living solely off of their benefits. In one post, UserD9
talks of losing their benefits of over a decade due to unknown reasons. When
asked if they worked and if that this could possible have had an effect, they
mentioned that they work part time as a cashier to help pay for their epilepsy
medication and treatment.
”I work as a cashier and work with paint as a job. I have epilepsy and
the job is nothing having to do with that. They claimed I got the dis-
ability because of ”learning disabilities” and ”a depressive disorder”
whatever that means as I have never been diagnosed with the latter. My
problems are ulcerative colitis and Epilepsy.” - (UserD9, 2/10/2019)
In a later reply in the same thread, they describe their issues with the system
and the struggle that getting removed from disability has caused for them.
43
”They did not count me as substantial gainful activity though. I al-
most wish they had as I would have 2 years to get in easile and 2
years of medicare to cover me while I am working. Now I am not
sure what I am going to do. My problem is less that I lost the dis-
ability, it is they cut me loose with no plan, no offer to help me plan.
No they are like ”oh hey the epileptic will be just fine without insur-
ance for her medicine.” That is my problem they gave me 2 months
for a safety net with no plan. I also find it off the severe health con-
ditions I have were not considered. As to ADHD I cannot even take
medicine for it because of the epilepsy. As to depression, sheesh they
caught me on a good day. I am always frustrated on how to make ends
meet. With insurance my epilepsy meds cost about $6000 a year!” -
(UserD9, 2/10/2019)
• Support - The topic of Support varied heavily from post to post, but the common
themes found were the types of support being offered, posts concerning support fo-
cused on several distinct types of support: support for accessibility or accessible
technology, support directly related to a disability or condition, emotional support
meant to help another feel better or less alone, social support detailing social life
questions or issues with a disability or condition, and outsider understanding of how
those with disabilities are able to live meant for for the purposes of research or sup-
port.
– Accessible Support - Accessible Support appeared in all three subreddits, but
was most commonly found on r/Blind and r/disability. r/ADHD did have dis-
cussion classified as accessible support, but accessible support topics of conver-
sation on r/ADHD differed from those found on the other two subreddits. On
r/ADHD, topics of accessible support focused on support for those taking med-
ication. Many users come to r/ADHD for support regarding their medicine or
treatment and several posts focus on users talking directly about how they feel
44
when they do and do not take medicine. UserA7 details a long post discussing
their history of diagnosis and the feelings they had after becoming diagnosed.
They also ask questions about the way that their medication affects their ability
to get things done regularly, feeling that they cannot get anything done when
they are off this medication and this has left them feeling lazy and severely
affected their social life.
”I’ve always had a history of tardiness, lack of interest in schoolwork,
and waiting until (and sometimes still missing) deadlines. But until
recently, I had never really thought of myself as ADD. I first decided
to see a medical professional about it shortly after graduating from
college and my tardiness cost me my summer internship. So since
Aug 2014, I’ve been on Adderall...I’m supposed to take that every
day, 30 times a month.
But even in the beginning, I was worried about dependence and toler-
ance. So I take off-days when I can...But as the semester of my next
phase of schooling...progressed, I would take it on the very day an as-
signment is due and crank out the assignment in 5 hours or so. Then
came final exams and I took it yet more frequently about 12 hours be-
fore each exam. So I’d study, take the exam, and crash and sleep right
afterward only to repeat this 12-cycle for the next exam...After finals
ended, I took a break from Adderall for a month. That month was my
most unproductive ever. I would just lie in bed and watch TV, read
easy-to-read nonsense online, play video games, and do other cogni-
tively easy tasks...
I also see a psychologist (i.e., someone other than my -psychiatrist-
who prescribes me medications) twice a week but there’s so much to
cover that, after a dozen sessions, we haven’t practiced actual strate-
gies...This psych really made it a point that ADD–my condition–is
45
”neurological.” That is, there’s something wrong with how my brain
works, and I can’t overcome it by just ”working harder” or ”putting
more effort in”...
This semester is going down the same road as last semester. Only
worse, because at least last semester I can leisurely read and do school-
work without Adderall. This semester, on the days I’m not on Adder-
all, I can’t bring myself to do schoolwork or pretty much anything.
My days off Adderall is much like the month right after finals–all I
do is lie in bed, let my room get messy, play video games, browse
nonsense internet, and watch TV...
I’ve spoken to friends who also say that they’re diagnosed with ADD...I
can’t imagine how any of them can be as lazy and unmotivated as I am.
The irony is that on my off-days, I can’t do anything but lie in bed.
But on my on-days, even though I can get stuff done, the Adderall
makes me too anxious to hang out around other people. Sometimes I
need to take the Klonopin I’m prescribed just to make a public appear-
ance in class...Since I’ve more frequently avoided classmates, peers,
and friends because of either wanting to lie in bed or being too anx-
ious, I’ve become something of a recluse and lost touch with a lot
of the friends I made earlier this academic year, when things weren’t
as bad....This is all a really long way of asking ”how can I stop be-
ing a lazy bum nailed to my bed when off Adderall?”” - (UserA7,
3/22/2015)
On r/Blind and r/Disability, topics of accessible support focused on accessible
devices, accessible housing, supporting recently-disabled loved ones, help find-
ing accommodations, and help with disability benefit applications. Users on
r/Blind asked for help regarding accessible devices like prescription dark sun-
glasses. In one post, a user discusses issues with photosensitivity and vision and
46
asks for help and recommendations for finding specialized sunglasses. UserB7
replies, offering support and on the right type of sunglasses that the original
poster may need.
”A big part of my eye condition is being sensitive to light. i also
struggle in big shops due to their fluro lights, on sunny days and staring
at a white computer screen with small black text. It may be worth
trying amber / brown / copper tinted glasses. they reduce glare, help
contrast and depth of field. they distort colour a bit but not as much as
other collars. Yellow and blue are also good options. I suggest having
2 different colours. In low light settings (early morning) yellow lenses
would be better than the amber.” - (UserB7, 6/07/2019)
Several posts center around finding housing accessible for a person with dis-
abilities. In one instance, UserD10 describes having a number of disabilities
including PTSD and having trouble getting accommodations for a service dog
because their landlord refuses to compromise on a solution, and asks for any
help they can receive in filing an official complaint against their landlord.
”I’m living with a number of disabilities, my first question is: Are my
medical diagnoses, by my PCP and Psych ”enough” to ”qualify” me
as being disabled, or is there an official way this needs to be ”proven”
for lack of a better term...What I am looking for is reasonable accom-
modation at work for PTSD, (also suffer from Panic Attacks, Anxiety,
Depression and Chronic Migraines)...I currently rent in NYS [New
York State]: Landlord lives on premises, there are I believe 6 units, we
are currently the only occupants...I want a dog. A companion dog...I
feel it would be a huge help to get a dog again. Landlord refused; I
gave landlord letter from my psych and another licensed mental health
counselor I used to work with to explain the benefits. Landlord was
47
open to talk, but placed size and breed restrictions, making it diffi-
cult to adopt I need this dog to be large to aid my ptsd; a little one or
medium is not going to work. Think Labrador. And I don’t plan to live
here forever so I do want to choose a breed/mix. Landlord is not giving
me a straight answer, and giving me the run around; asking to meet and
then won’t show up even after documentation. Landlord demands rent
increase and deposit, which is prohibited under fair housing!? But I
was willing to do this. Not allowing a puppy. Not allowing any breeds
mixed with pit, Rotweiler, German shepherd etc which is most of the
shelter population.
Back to my question: do I need to be certified disabled? Can I file a
complaint with HUD as landlord is refusing to accommodate me.” -
(UserD10, 06/10/2017)
– Disability Support - The theme of disability support was frequently discussed
by users of all 3 subreddits. Disability support in this case means direct support
related to a disability, not posts discussing accommodations or medications, but
posts discussing techniques for dealing with disability-related problems, asking
for advice following a diagnosis, posts about a disability made for the purposes
of understanding other people’s symptoms as they relate to an individual’s own,
and posts asking about getting diagnosed. Adult-aged users on r/ADHD (18
years old and above) discuss hesitancy to get diagnosed or discuss negative
feelings with getting diagnosed partially due to a perceived social stigma from
others about having adult ADHD. Adults with ADHD discuss validation issues
because of the societal perception of ADHD as disorder primarily present in
children and because many with ADHD are diagnosed as children. In one post,
UserA9 asks about getting medicated as a 20 year old, saying that they are
afraid that as a 20 year old they feel they may be seen as just trying to get drugs
instead of actually getting help for ADHD, in particular mentioning parental
48
judgement as a factor.
”I believe I may have ADHD or a similar attention disorder based
on some experiments I have been conducting with very controlled
dosages of vyvanse and adderall. Im afraid that as a 20 year old col-
lege student trying to get a diagnosis and perscription, my parents and
doctors will think im just abusing perscription drugs. So is it worth
it for me to even try this? I think I really need the medication, but Id
rather go my entire life without it if it means my parents will think im
a drug addict...
EDIT: Thanks for all the awesome responses and messages guys. Im
realizing from these discussions that my issue is more one with my
family than with medication. Whether or not I need these drugs is
up to the opinion of a medical professional, but I haven’t gone to see
one about it because of how I know my parents will react. Im not
sure whether or not they believe in ADHD, but I know that they don’t
believe in needing or using drugs to help deal with mental disorders...”
- (UserA9, 12/10/2016)
– Emotional Support - The topic of emotional support appeared in all 3 sub-
reddits in similar ways. Users engaging in or asking for emotional support
made posts or replied to posts surrounding themes of reaching out for advice
and comforting words post-diagnosis, tips on dealing with emotions associated
with disability, general venting about a disability or the way it effects the life of
a user, and tips for emotionally supporting loved ones with disability. UserA10
describes the elation they feel after receiving, sharing the intense emotions they
feel after their diagnosis, ultimately thanking users of r/ADHD for helping them
reach this point in their treatment.
”...I’m sitting down at work a mere hour after receiving my official
diagnosis, and I feel like the entire weight of all my failures has been
49
lifted.
For so long I punished myself with all of my personal failures – memo-
ries of everything I wanted to do but couldn’t, social isolation because
I just couldn’t fit in as a kid. Now I know – that it isn’t my fault, it
isn’t anyone’s fault, and it can be treated.
I feel so validated I could cry. The struggles I’ve had aren’t me, they
are a condition – and most importantly, I am not a bad person.
I have an rx, a CBT therapist will be scheduling with me, I have a list
of books to read and groups I can attend – and I have all of you. This
sub has already been such a boon to me in my pre-diagnosis phase,
and I can’t wait to keep learning and thriving along with all of you.
For the first time in so many years I feel HOPE.
Thank you for reading, and for helping.” - (UserA10, 8/21/2015)
In another post on r/Blind, a user espouses that they are losing their vision
quickly, taking it very hard, and in need of support from others. UserB8 replies
to this post, talking about their personal experience of losing their vision and
assuring the original poster that they are not alone in their feelings and urging
them to ask for help if they feel they truly need it.
”...For the most part, I’m ok with the degeneration of my sight, but
that’s not always the case.
It feels worse when you think about what you could do in the past.
Three years ago I could read a book no problem, today I can still read
books, but I need a desk light, magnification, and I can’t read entire
words at once. Or when I booted up Heroes of Might and Magic IV the
other day and found I couldn’t play it because everything just blended
into one. People send me gifs and videos? It’s just a mess of colour
that I have a hard time distinguishing into anything meaningful. Every
day it’s like my ability to interpret visual information, track objects,
50
and keeping my eyes focused gets worse. And when you live on your
own without anyone to bounce that experience off for support, that can
eat at you.
You aren’t alone, focus on what you can do, don’t get hung up on what
you can’t, and don’t be afraid to ask for assistance when you need it.”
- (UserB8, 5/27/2018)
– Social Support - Social support as a theme was found often across the sub-
reddits with users posting about difficulties finding friends, difficulties being
social in general, dealing with family issues in relation to disability, and the
struggles of isolation. Users talked about the difficulty of getting family to rec-
ognize them after a disability or recognize their disability. UserD12 describes
attending a family gathering after a diagnosis of lupus left them confined to a
wheelchair. They describe feeling separated from their family and talk of how
they noticed a definite change in the way that family members approach them
now and the overall emotional toll that this takes on UserD12.
”So Back in February I was diagnosed with lupus...Its been rough.
I lost mobility in my legs my arms and lately I lost my voice. My
extended family knows all this.
Today was my little cousins high school graduation party and I was
excited to go...My parents drove me and I was excited but nervous to
see my family they are usually pretty good people.
During the party no one would walk within 5 feet of me. They said
hi from a distance, and when they heard my voice is gone they just
stopped talking and walked away. Didnt ask how I was maybe the
occasional asking me what was wrong followed by all the things I
should be doing and then walking away. I have a push wheelchair so i
cant move on my own.
My favorite cousin came with her new baby and she didnt even say
51
hi...She wouldn’t let me look at the baby...anytime I tried to say hi she
just waved and went somewhere else.
My Parents left me sitting at a table alone for 30 minutes...I asked my
uncle to move me to be closer to my cousins and then suddenly it was
time for them to go. I just felt so ashamed and sad. I don’t know yet if
this is going to be my life from now on. And if it is, is this how I will
be treated from now on.
To be clear my family are huggers. Always hugs, saying hi and say-
ing goodbye. Everyone was hugging eachother while I got maybe a
shoulder tap from every 1/5 people.
Everything has been so much. I just dont know how much more I can
take. First my doctors making me feel like its all my fault. My parents
constantly coming in with their judgements of what I should be doing
and now this? I cant do it anymore.” - (UserD12, 6/16/2019)
UserB9 posted asking others for recommendations of subreddits where they can
make friends because they say their brother is going to college soon and they
want to talk to someone else besides their brother.
”Hello my name is [UserB9]. I am 14 and 2 months old. I am blind
and my hearing is limited. My brother is starting college and I would
like to talk to someone else. I have looked at the teenager reddit but I
do not think I will belong there.Thank you.” - (UserB9, 10/27/2016)
UserA11 discusses feeling socially deficient after starting a treatment for adder-
all which they feel has hampered their ability to speak in social settings, they
ask for confirmation that this is not unique to them and for advice on being able
to solve this problem.
”I am prescribed 15mg of generic Adderral IR that I take as needed
(two-three times a day). Before starting this, I was a phenomenal pub-
lic speaker and engaged with everyone in conversation; now I am at a
52
loss for words when public speaking or speaking with people. Does
anyone else experience this? Any recommendations to bring back the
ability to communicate well?” - (UserA11, 12/19/2016)
– Understanding - The topic of understanding occurred in r/Blind and r/Disabil-
ity and involved users asking to interview members of the subreddits for aca-
demic purposes, helping parents raise a child with a disability, asking questions
to determine the best way to interact with people with disabilities, and asking
how people with disabilities live a daily life. Posts with this theme tended to
feature a direct discussion with a user who does not have a disability attempting
to understand the perspectives, lives, and needs of people with disabilities to use
this information to help them provide support for others. User D13, a worker at
a restaurant, posts questions asking the best way to ask someone if animal that
accompanies them is a service animal and the specifics of the animal’s train-
ing. She states she is asking so as to not provide inadequate accommodations
or infringe on rights established within the ADA.
”I work in a restaurant and I want to make sure I get this right. I know
I can ask two questions, 1. ”Is this animal (a dog or miniature pony) a
service animal related to a disability?” and 2. ”What services has this
animal been trained to perform?”
If I ask this second question, what kind of answers can I expect?
I obviously don’t want to infringe on anyone’s rights under the ADA or
fail to be accommodating, but I can’t allow people to take advantage
of service animal status for emotional support and other non-trained
pets.” - (UserD13, 6/24/2019)
UserB10, a parent to a newborn recently diagnosed as totally blind, posts asking for
advice on how best to support their child now and asks questions about the future of
the child’s condition, necessary future accommodations, and the kind of life the child
will live, specifying they want their child to be able to live as normally as possible.
53
”I hope this post is not offensive, because I’m a sighted person and have
no clue of blindness. We’re pretty devastated right now, because we hoped
that the doctors could fix his eyes, but apparently the leucocoria in both his
eyes was not caused by PHPV, but by the retina itself which are completely
detached. They suspect maybe norrie syndrome, but it could be something
else aswell.
So we got a few initial questions. We will get help with the nearest center
for blind, but I’d really like some insight from other blind people.
First, how hard is it for you to navigate through your everyday life? Is
it possible, for example, that our son will be able to get out himself and
play alone? He’s only two months now, but its hard for me to imagine him
going to the playground by himself in a few years. Can you go wherever
you want to, or only to places where to you know your way very good?
Then there is the question of schooling. I know there is a school for blind
kids near where we live, but there might also be options to put him in pub-
lic schools. Are people here who did either? What would you recommend
and why? On the one hand, this special school will accomodate his needs
very well, on the other hand I would like my kid to be able to live a ’nor-
mal’ life, with friends who go to the same school and live nearby. Is this
stupid?” - (UserB10, 4/02/2019)
• Accessibility - Accessibility discussion was common on all three subreddits but took
slightly different forms usually based on the subreddit or the disability being directly
discussed. The topic of accessibility was explored through the themes of accessible
technology (digital devices meant for accessible purposes), physical accessibility de-
tailing real world accessibility issues such as ramps for wheelchairs, and accessible
sound (a topic mostly found on r/ADHD) which focused on music in an accessibility
context.
54
– Accessible Technology - Accessible technology was most frequently discussed
as a topic on r/Blind and r/ADHD. Both subreddits had discussion based around
software meant for an accessibility purpose, but the software and applications
that were being discussed differed from r/Blind to r/ADHD as different ap-
plications are meant to help different disabilities. For r/Blind this involved
discussion surrounding dictation software and screen readers for mobile and
computer, discussion of web accessibility, users asking for recommendations
of accessible software either for them or a blind loved one, discussion of de-
scriptive audio services in theaters and for YouTube, and general discussion
of accessible technology such as calculators. Discussion of screen readers and
dictation software featured users naming the various software applications they
use for different purposes. In one post, a user asks the members of the r/Blind
subreddit about how Blind people are able to use computers as this user has re-
cently started discussing a TV show, Mr. Robot, with a blind person online and
this user wants to know how best to type messages that the screen reader is able
to effectively read for the benefit of their blind friend. UserB11 replies to this
post, offering their perspective on the matter of screen readers and messaging.
”Just to give you a different perspective:
Totally blind, but I use my laptop and occasionally my iPhone. It’s to
each their own, I suppose, but I personally don’t like the idea of people
catering to me just because I’m blind, you know? Generally if some-
one is going to gripe at you about using acronyms, it’s just them being
picky; it’s not like any sort of text-to-speech has any problem with
them. Sure, lol might be pronounced as ”loll”, but that doesn’t change
the meaning of the phrase any–we would all still know what it means.
Similarly, :P is going to be read as colon P, but that doesn’t mean
that we don’t know what it is (most of us, anyway)...I normally have
most punctuation enabled...but if there are people that would rather not
55
hear quotation marks, or brackets and such, they can turn that off; you
don’t have to be conscious of not using those things...P.S: We can’t
tell if something is WRITTEN LIKE THIS WHICH A CRAP TON
OF PEOPLE USE ALL THE TIME. Heartbreaking for me, but I learn
to deal. I had a friend who would start telling me every time he used
caps, but it just made me feel like a pleb[ian] so I told him to stop
lmao.” - (UserB11, 7/13/2016)
In another post, a user asks the members of the subreddit their feelings on the
movie-going experience and their general thoughts on descriptive audio for
movies. UserB12, in the highest voted comment in the thread, shares their
thoughts on descriptive audio systems overall.
”The reliability of descriptive audio systems continues to be a disap-
pointment. It would be much better with ONE change; a test track
before the main feature begins.
In the 20 years since the first movie we saw with description the sys-
tem has worked flawlessly about 25% of the time. I wish I could say
it was getting better. The technology is improving but reliability is
unfortunately still unacceptable. We thought that the smartphone app
synced description track would work better but that has failed us as
well.” - (UserB12, 5/05/2019)
On r/ADHD, accessible technology discussion focused around applications to
help mitigate the symptoms of ADHD, such as applications with a timer, ap-
plications meant for scheduling important dates and sending reminders, appli-
cations for monitoring medication usage, and devices helping users find things
they repeatedly lose such as phones or sets of keys. In one post, a user asks the
members of the subreddit what features that they personally would like to see in
an application meant to help people with ADHD function effectively from day
to day. Users replying to this post heavily mention wanting applications that
56
track daily tasks, remind users about tasks repeatedly, or allows them to see
their tasks from a centralized screen location so that tasks are always visible.
UserA12 discusses the features that they would personally design an application
meant for helping people with ADHD around.
”My ADHD App idea:
Todo List that shows me ONE TASK.
Below that one tasks are the following options.
*
I’ve done this. - Prompted for anything else that needs to be done.
*
I’m in the wrong place to do this - prompted for location (work/home)
*
I can’t do this now. - Prompted for start date, with a random button
for when I just don’t know.
*
I’ve worked on this but not done. - Item is moved to the bottom of
the list.
The working list is filtered by those conditions so I don’t see home
tasks at work or work tasks at home, and I won’t get prompted about
things I can’t work on right now.
In my dreams, it ties into my calendar, so if I have a meeting it shows
me the meeting instead of another task. As long as I’m dreaming, there
is room for notes on what I’ve done that I can search next time I have
to do something similar.” - (UserA12, 9/23/2016)
Accessible technology did not appear much as a topic at all in r/disability, with
only one major instance being found. In this instance a user posted about an ap-
plication they were working on which is meant for people in wheelchairs to rate
the overall accessibility of local establishments. They claim the application is
meant to rate an establishment’s accessibility in their parking, seating, entrance,
and bathrooms. UserD11 replies to this post, suggesting more avenues the ap-
plication can take and what they would like to see.
57
”Another suggestion is gathering more info regarding the bathrooms
like how many wheelchair stalls are available, is their a family or com-
panion friendly restroom, as a proud owner of an ostomy I also would
like to know if there is a sink in the stall or a private place to change
out my bag when needed and if there is a trash can for disposal in the
stall.” - (UserD11, 7/02/2019)
– Physical Accessibility - The discussion of physical accessibility again differed
between the subreddits as each dealt with accessibility from the perspectives of
different disabilities. On r/Blind, discussion of physical accessibility came from
conversations users had about various topics surrounding guide dogs, questions
about braille such as learning braille in other languages, and users asking ques-
tions regarding the best methods for blind transportation. Discussion of guide
dogs was quite common, with uses asking about the price of owning and main-
taining a guide dog, assessing whether a guide dog may be the correct accessible
support for them, discussing concerning behavior in guide dogs, and debating
the issue of fake service dogs and how best this can be mitigated by legal ac-
tion. One user made a post asking about the common costs that are incurred
from owning a guide as they wish to fund raise to help a friend purchase and
maintain a guide dog. The post they make lists out the costs for a guide dog
according to their friend who needs one which includes such figures as $400 a
month for medical care and $80 a month for grooming. UserB13 replies to post
detailing their own knowledge of owning guide dogs and lists off the costs of
owning a guide dog that they have experienced.
”Your friend is either tragically misinformed, or is trying to screw you
royally. Source: I am a guide dog user of just over 6 years. First of
all, the medical expenses... There are vets who take care of service
dogs pro bono. Even if there are none of these vets in your local area,
the dog only needs a checkup every year, shots, and visits if he gets
58
sick. Even without the free services many vets provide, the medical
expenses should be along the lines of 400 bucks a year maximum.
Second, grooming. Guide dog schools give extensive training on dog
grooming, along with providing brushes and other assorted grooming
stuff. The master grooming his own dog is also an important part of the
bonding process, and is emphasized by many schools as a technique
for keeping your relationship with your dog at the high level required
to be a good working team. Food... Uh, 80 dollars a month on food is
insane. The standard food for a guide dog from the school I attended
is Purina One. It costs around 35 dollars for a 40 pound bag. This
should last a month and a half to two months. As far as transportation,
that has nothing to do with the dog. Sorry to say it, but this is a scam.
It is infuriating to hear about people trying to get by with this...Your
total expenses a month ad[d] up to over 500 dollars...If it cost this
much money to have a guide dog, there would be nobody with them.”
- (UserB13, 2/05/2015)
On r/disability, physical accessibility discussion took the form of many discus-
sions related directly to wheelchair accessibility in many aspects and areas of
life such as the issue of cars being able to fit wheelchairs, wheelchair ramps
making locations accessible or vice versa, getting wheelchair access on planes,
getting wheelchair accessibility for social places such as a concert or a high
school prom, and recommendations for wheelchairs or other mobility devices.
On post begins with a user sharing a Pitchfork article discussing the difficul-
ties of attending concerts while having a disability. This post receives a reply
from UserD12 who shares their experiences attending concerts while being in
a wheelchair and the problems they face.
”...These problems are only amplified if you’re in a wheelchair. I live
in a fairly small city and the most popular venue for smaller bands...is
59
this tiny...place up above a bar with two flights of stairs. If it wasn’t
for being in a wheelchair I would be going to multiple shows a month.
But because of the chair I think I’ve been to 5 shows in like 7 or 8
years. The place has no elevator and the tiny bathrooms upstairs are
less than accommodating. But if I love the band I’ll be damned if I’ll
let the inaccessibility stop me from going.
Right now I’m kind of dreading it though. A band my girlfriend really
loves is playing there in a week and she really wants to go...So I’ll do
it for her, but I’m not looking forward to making that trek up the stairs
and being stuck up there for a few hours and not having access to a
functional bathroom.” - (UserD12, 3/11/2015)
Physical accessibility on r/ADHD took on a more varied form than in the other
subreddits. Physical accessibility discussion revolved around helping others
manage symptoms of ADHD through physical means, in this case physical
means meaning using non-digital devices or applications to help them. Instead
posts focus on behaviors or actions that people with ADHD could be doing to
help support themselves, such as organizing rooms, finding clothing (specif-
ically pants) that can store items to help those who have a tendency to lose
things, using meditation practices for calmness and relaxation, and help with
bad lifestyle habits such as staying up late or being too focused on scrolling
through a phone. UserA13 created a post urging people with ADHD to manage
their scatterbrained behavior by investing time in organizing rooms and singing
the praises of this approach and how it helped them.
”I recently have taken two full afternoons to organize/clean/shape-up
my room, and it has made a world of difference on my attitude and
well-being.
I never realized how much of an impact would be made by hanging art,
photos of family/friends, having a plant(s), and lots of shelves/cubby
60
holes.... I have a small room, so this stuff is necessary to create more
surface space for all the crap I won’t let go of.
The floors are hard-wood, and a rug has done wonders in making the
place feel cozier, and it definitely helps keep it warmer in the winter.
There was a trickle affect, and I was able to get through a workout
I had been dreading to get back into, as well as get on top of some
paperwork I had been putting off.” - (UserA13, 1/19/2017)
– Accessible Sound - Accessible sound appeared the most on r/ADHD though
there were a few posts relating to the theme on r/disability as well. The dis-
cussion of accessible sound on r/ADHD had exactly two main areas of focus:
people discussing music as a tool to help them focus and people discussing
issues with and tips for managing hypersensitivity to sound. Multiple posts
on r/ADHD discuss and emphasize the importance of music for people with
ADHD, as many say that music helps them focus on a wide range of actions:
driving, exercise, studying, even managing major anxiety when taking medi-
cations. Many posts deals with users asking for music recommendations for
music that can help with focus or discussing the act of using music to help fo-
cus and whether this approach works for some. UserA14 replied to a post from
another user asking about using music to help them focus on schoolwork. In
their reply they detailed how music helps them focus and their preferences.
”It may be different for you, but music for me is too distracting when
I need to put thoughts together. Sometimes, minimalistic music hits
that middle ground of not distracting and tuning out the background.
Artists like deadmau5, blackmill, things like that. Film scores and
soundtracks from my favorite tv shows often have no lyrics and tune
out the background sounds as well. I also really like film scores and
soundtracks.” - (UserA14, 7/29/2016)
UserA15 posted describes their own preferences and issues for using music to
61
help them study and asks members of r/ADHD to share their own experiences
on the subject,
”I noticed it really helps to listen to music, particularly while doing
more repetitive parts of my work. It helps me filter out environmental
distractions, and it keeps my racing thoughts at bay.
However, it has to be songs I know well. Else I will be distracted by
trying to make out the new lyrics, get curious about the artist etc. and
end up wasting time on that instead of working...Then again, if I listen
to something for too long, I get bored of it, and my mind gets stuck in
”oh gods not THAT song again!” and I just want to stop listening to it.
I thought about spending some time each week to discover new music
while not working, and then put it on when I work, but I never get
around to it...So that’s where my dilemma is. I am bored of all the
music I know, and I am bad at finding new music while not working.”
- (UserA15, 1/12/2017)
Accessible sound discussion was infrequent on r/disability, the few times it did
appear it took on the form of conversations about being able to play or listen to
music while having a disability. In one post, a user with cerebral palsy asks the
musicians of r/disability about how they play their instruments with a disabil-
ity. UserD13 replies to this post, describing their history with playing musical
instruments and making music with a disability, giving the original poster en-
couragement and recommendations for their own musical career.
”I’m left handed and everyone around me was right handed so I had
to learn how to play basic guitar notes upside down and backwards...I
didn’t learn many chords because I couldn’t hold down the notes with
my fingers (I have Muscular Dystrophy myself) Maybe finding a smaller
guitar could help as well?
62
I’m a drummer myself but stopped playing when I stopped walk-
ing around 2002 because I got exhausted after only playing a couple
songs...That’s when I found out about electronic music and went to my
first rave. It changed everything, and I found out other ways to make
music using computers with music programs that can let me play any
instrument I want with a midi keyboard or midi pads you can hit with
your fingers or drumsticks. I’m still making music to this day and keep
the drumming alive with finger drumming midi controlled hardware.
I suggest maybe doing something along the same route since you can
play whatever you want without physical limitations. 12 years and I’m
still rocking on!” - (UserD13, 1/11/2016)
• Social Situations - Discussion of social situations between all three subreddits var-
ied theme-wise. Themes were split between several areas of discussion: threads
concerning the societal discussion of disabilities, issues surrounding social interac-
tions, advice and discussion of romantic relationships and general relationships such
as with friends, coworkers, or authority figures such as teachers, and posts regarding
parenting from the perspective of parents and children.
– Societal Discussion of Disability - Societal discussion of disability was a sub-
ject that was found on all 3 subreddits and generally featured overall similar
discussion. Societal discussion of disability in this case focused around users
talking of their feelings on disability discussion from able-bodied people, such
as able-bodied people’s thoughts about disability and topics such as jokes at the
expense of disability, and talked of how this discourse affects them personally.
On r/ADHD this discussion often took the form of anger or frustration at soci-
etal misunderstandings of ADHD or jokes about ADHD. Able-bodied people’s
reactions to accommodations is discussed, such as extra time on tests. People
given more time to take tests describe how this results in people telling them
that they are ”lucky” or ”special” to have ADHD and these people wish they
63
too were not neurotypical so as to receive ”special treatment.” This can result in
people either feeling bad about their own accommodations or refusing to seek
accommodations for fear of being perceived as different. Users discuss their
feelings when able-bodied people make comments to them implying that they
wish they had a disability just for the accommodations. UserA15 posts about
their frustrations related to their issues with ADHD when an able-bodied person
tells UserA15 that they wish had ADHD so they could get more time on tests.
”Like as if they wish they had a disability. Do you want to loose focus
every 5 minutes and forgetting what you just did? Do you want to live
as a person who takes longer to do everything such as homework or
reading where you basically have no time to do anything else? Do you
want to be a person who has such a hard time catching up that you
don’t really have time for a social life because you’re afraid of being
awkward. And the worst thing is, even if you do succeed or do well
on an exam your peers will just brush it off and say you “had extended
time”, as if You weren’t just as capable as they are. On top of that,
some people will use you as a tool and steal your pills just so they
can get high. You have to work twice as hard just so you can prove to
others that you’re capable and teachers may still doubt your abilities.”
- (UserA15, 10/11/2018)
On r/Blind a blind user made a post about their affinity for making blind jokes
whenever possible. This thread receives many replies from other blind or visu-
ally impaired users, including UserB14, all echoing the sentiment of liking to
repeat blind jokes as well.
”I have absolutely 0 problem cracking jokes about my situation. It
actually surprises some people. but, this has been me for as long as
I’ve been me, so... eh. Honestly, sighted people end up more of-
fended about things re: blindness than I do. It’s moderately amusing.”
64
- (UserB14, 9/03/2018)
On r/disability, threads pertaining to societal discussion of disability focused
very specifically on discussions of ableism
3
and discussions of the lenses through
which society sees disability. Users talk about the ways that able-bodied people
behave towards them and how that behavior makes them feel. They talk about
how able-bodied people frequently seem to undermine their disability or talk
of wanting to ”cure” it. In one post, UserD15 shares common interactions they
had have with religious people who comment on their disability.
”So I’m physically disabled. Have been my whole life. I have co(
cerebral palsy). I live on my own. I can do things on my own. I use
a walker or crutches and when I’m out and about random people I’ve
never met will come up to me and ask if they can pray for me, or that
Jesus loves me. This infuriates me...Why would I need reassurance
that Jesus loves me. Your praying to cure me. What’s wrong with
me in your eyes that needs to be fixed . In my opinion religion is
used as a shield for bigotry for so many different things.” - (UserD15,
12/19/2018)
In another post a user shared an article about the film Me Before You, which fea-
tures an able-bodied man become disabled and then later features him taking his
own life at the end of the film as a result of the disability. UserD16 shares their
thoughts on why people with disabilities find portrayals like this offensive and
the larger societal misunderstandings that results from these types of depictions.
”...I do understand why people are upset about it and I don’t think
they’re offended just for the sake of being offended.
Feeling like a burden is something a lot of people experience and it’s
massively soul-destroying. I respect the right for people to choose to
3
https://www.merriam-webster.com/dictionary/ableism
65
end their lives but we should be careful that that is not corrupted to
become the result of inadequate support or a feeling of being burden-
some. People internalize these kinds of messages. I know I did.
The author herself has made some non-sensical statements: ’My nephew
is in a wheelchair and I hope he will be pleased to see this shown in
a way that does not make audiences too uncomfortable. If we had
shown Will being taken in and out of his chair, or put in a hoist over a
bath, the impression we would give is of difficulty. I wanted to make
it more normal.’
Sanitizing the experience of disability whilst at the same time trying
to tell people that being disabled is so awful and difficult and horrible
that you simply must want to kill yourself is absurd. It is one thing to
have these thoughts as an individual disabled person, it is quite another
for those feelings to be normalized and legitimized through popular
culture through such a simplified lens. I think that’s reckless. This is
not how we move forward as a community.” - (UserD16, 5/30/2016)
– Social Interactions - Discussion of social interactions happened most on r/ADHD,
but the theme did appear occasionally in r/Blind. On r/ADHD discussion of so-
cial interactions focused on the perceived difficulty of social interactions due to
challenges presented by ADHD symptoms. Users talk about issues with rejec-
tion sensitivity dysphoria (RSD, a symptom of ADHD), a tendency to ramble,
and inability to control intense emotions as contributing factors making social
interactions difficult for them. UserA16 posted about their troubles with RSD
and the difficulties they have in social interactions because of RSD.
”I saw a comment on this sub that mentioned RSD so I googled it, and
holy shit. I have never read something that so accurately describes
me. I am incredibly sensitive to criticism and rejection. And it is to
the point where I am reluctant to try things. College has been less
66
than enjoyable for this reason; I have been rejected from several jobs,
social/professional greek life, honors and departmental activities, and
too many internships to count.
I also withdrew from people more and stopped trying to go out of my
way to make friends because of my experiences of perceived rejec-
tion (people not reciprocating my interest in communicating). So this
has resulted in a very unsatisfying, stagnant college experience. With
graduation around the corner I have made little effort to look for a job.
I got used to rejection and now I expect it. But there’s still instances
that throw me into deep emotional turmoil. I was rejected from a cam-
pus job in the spring and I cried and spent the next week or so in a
depressive episode. I thought this was a symptom of depression and
learned helplessness, but this is a very interesting perspective to read.
How do you all deal with RSD?” - (UserA16, 12/11/2017)
On r/Blind, users discussing social interactions talked about a desire to not be
seen as separate from others due to their visual impairment which results in
anxiety for them during social interactions. UserB15 made a post discussing
their new job and talked about the accommodations they were receiving, saying
that despite the accommodations helping, they made UserB15 feel uncomfort-
able and like they were sticking out. They mentioned that they have have had
coworkers make occasional jokes about them being blind, which they feel may
effect how they perceive their disability int he work place now. They mention
they desire to feel less ashamed about asking for accommodations.
”I’m starting a new job as a software developer next week. For me
to use a computer comfortably, I have a huge 42 inch display, which
makes the text large enough so I can read it at a decent distance away...I’ve
always had this strong dislike for looking different, for standing out,
or looking obviously disabled. I worry about what other people must
67
think of me, and whether it will cause me to be some kind of outcast
amongst the group.
At the last place I worked, I got by without this large display because
the screens they already had were large enough already, but not ideal.
My coworkers cracked the odd blind joke, but I knew for certain they
were supportive, and liked me. So it’s certainly possible that these
fears of mine are entirely unrealistic, based on my past experiences.
All of those anxieties, like feeling like you’re less competent than
other coworkers, taking longer to do things, feeling like you have sub-
optimal productivity for the company.... those worries pile up in my
head and make me want to just run away from it all. Perhaps this is
internalised ableism?
Advocating for my access needs, and not feeling ashamed about adap-
tive technologies is definitely a skill I need to work on, and believe my
success depends on it.” - (UserB15, 5/24/2019)
– Romantic Relationships - The theme of romantic relationship was found in all
3 subreddits. Users discussing romantic relationships most often discussed tips
and advice for dating while having a disability (or just general advice for dat-
ing unrelated to the disability), anecdotes from users’ personal love lives, and
testimonials from spouses of people with disabilities discussing their feelings
of living and loving a person with a disability. UserA17 is a spouse of some-
one with ADHD and discusses their frustration that their husband will not seek
treatment for the husband’s ADHD and this is causing a rift between the two.
”I just need some advice/different perspective. We have been married
for almost 9 years. We have a 2 years old. We have been to counseling
as a couple. He has never pursued it for his ADHD. I really believe
he thinks there aren’t any problems stemming from his behavior, and
he’s said so in so many words. I have tried for years to help him
68
and it’s only been in the last 2 that I’ve fully come to terms with the
fact that he has to want it in order for me to be helpful. I’ve read
books, podcasts, bought money management tools, apps, we’ve had
serious talks where I thought we were on the same page. I’ve pursued
counseling, everything I can think of.
He still checks out and physically leaves every chance he gets. He
tells me what I want to hear when it comes to therapy and medication.
He tried adderall and said he didn’t like it and he doesn’t want to take
meds. He nickel and dimes all of our money away. I tried to com-
municate my needs for our relationship and spark conversation and he
just diverts, ignores, makes jokes. All of the household and parenting
is completely on me. I try to tell him I need assistance and he brushes
it off. I don’t feel heard.
I just wanted to hear some opinions...Does anyone have a similar ex-
perience? I just feel like he isn’t making the effort. I’m at the point
where I feel like the only option is to spend time apart because I’m so
exhausted mentally, emotionally, physically. It’s easier when he’s not
around to disrupt the flow of the day and I don’t have to rely on him.
I really love him and I want us to succeed but I feel like he’s trying to
push me away.” - (UserA17, 5/05/2018)
In one post, a user posts on r/Blind saying that they are going blind and need
tips for dating and meeting new people. UserB16 replies to the post, discussing
their own history dating as a blind person and offers support and suggestions
for the original poster.
”Just be you doing the things that you enjoy doing. I’m fully blind so
have a pretty set routine and regular wingmen who go out with me. I
call into the same bar each week and know the staff, have a coffee int
he same cafe most days, and it soon becomes non threatening for any
69
one to talk to you if you’re chatting with staff.
Bar staff will occasionally suggest quietly that I call a cab home rather
than make a move, they can see stuff I can’t obviously, and I take part
in everything I can.
I have a sighted bf [boyfriend] who I met at my gym, he spotted for
me when my brother couldn’t make it and the staff asked if he’d like to
help me for 1/2 hour. Took longer than most relationships to develop
as I needed to get comfortable with him...” - (UserB16, 9/19/2018)
– General Relationships - The subject of general relationships was found on all
three subreddits and contained similar discussion between them. The theme of
general relationships was accompanied by personal anecdotes of people relat-
ing their feelings on sharing their disability with others such as family members,
friends, coworkers, and authority figures such as bosses, case workers, or teach-
ers. Users also post on the behalf of friends or family members currently dealing
with disability asking for information on a disability and for understanding of
the best terms and actions they can use to help others. In one post, UserA18
discusses getting diagnosed with ADHD at age 29 and is worried about being
able to tell their loved ones about the diagnosis. They relate the heavy anxiety
they feel and ask users on the subreddit for advice and reassurance on how to
talk to their loved ones.
”Hey guys, 29 year old photographer/writer who, until today, has been
living undiagnosed with ADD/ADHD...Been feeling a ton of mixed
emotions, but I got home around 5 to try and figure out some organiz-
ing techniques. It’s now almost 10, and I’ve gotten as far as clearing
my corkboard full of trivial things, dividing it into 4 and using thumb
tacks to write the words ’Idea’, ’To Do’, ’Do’ and ’Done’ on each cor-
ner....I start thinking about how when my wife comes home and sees
this mess, based on past experience, I won’t go into too many details
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but her A-type personality mixed with being tired from work mixed
with my inability to explain what’s going on, mixed with her unwill-
ingness to understand, and my anger taking over just will not be good,
I already know....I started feeling even more sad, but now major anx-
iety starts to kick in. If I can’t explain it to my own wife, How will I
explain this to my boss/business partner? It’s all been professional til
now, but he’s the one who founded the company so it’s his baby, and
he’s already mentioned before that my severe difficulty with sticking
to deadlines and sometimes missing small details are problems we re-
ally need to take steps to correct.
How will I explain this to my parents, who have played a part in why
I’m depressed right now due to a lot of overbearing strict parenting
that made me internalize a lot of things...It will absolutely lead to a
fight because I can only step away, breathe then come back so many
times before it’s just too much.” - (UserA18, 6/03/2015)
UserD17 posted about how they recently developed a motor disability that
causes them severe pain and now requires them to use a cane. They discuss
their frustrations at continued jokes and comments about the cane by cowork-
ers and they relay that they receive different, worse treatment from coworkers
post-disability.
”I dislocated my knee last year and my recovery was far less than ideal
and ever since I’ve been riddled with complications from it. On good
days I can get around alright for the most part, but I have some spinal
nerve damage from throwing my back out from said complications
that causes extreme shooting pain down my body whenever it feels
like it - especially when I’m under stress or feeling anxious and it’s
literally debilitating when it happens. I have miserable depression and
anxiety issues already so it’s quite frequent, and I can’t leave home
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without my cane.
I have a shitty coworker who just can’t...keep herself from calling me
nicknames that insinuate I’m less of a person from these conditions
and it drives me literally insane. I’m already finding it hard to get
out of bed in the morning and then have to deal with her...I have a
whiteboard behind my desk and she wrote one of her...little nicknames
for me on it with a permanent marker with an arrow pointing to my
chair. I’ve politely asked her to stop on numerous occasions and she
doesn’t. I finally lost my [cool] at her yesterday.
Then I have every...dumbass in the office telling me to get a sword cane
at least three times a week, often times going on some...tangent wast-
ing 5-10 minutes of my time every time I try to get a damn cup of cof-
fee or refill my water bottle. I’m not going to get a sword cane. Ever.
No amount of persuasion will convince me otherwise. Just...treat me
like you did before this...happened.” - (UserD17, 6/04/2018)
– Parenting - Discussion of parenting was found most often on r/ADHD and
r/Blind. Discussion of parenting had two distinct paths: parents asking how
they can support their child with a disability or a child with a disability dis-
cussing parents either being overbearing, mistrustful, or not supportive regard-
ing a diagnosis. UserB17 relays that they are a parent of a child with a visual
impairment and several other conditions, relays the conditions their child faces
and asks for help in being able to improve their child’s living conditions how-
ever they can.
”My son is 8 years old and has cerebral palsy. He also uses a feeding
tube for his nourishment. He is not able to communicate verbally so
I am unsure what the world is like for him. He responds to light by
squinting and seems to at times seem to respond to images and loves
watching things closely on his iPad. His diagnosis is Cortical Vision
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Impairment. My understanding is that there can be some people who
can somewhat see even if they are cortically blind. Is there anyone who
could explain more about their experiences with this type of vision
loss. I want to help him in as many ways as possible and a clearer
understanding may help. Any suggestions to improve his quality of
life would be great.” - (UserB17, 3/21/2016)
On the other end of the parenting spectrum, UserA19 posts updating the mem-
bers about the contents of a previous post. The previous post they had made
asked for suggestions on getting their parents to recognize that ADHD is an
issue that UserA19 may have and because of this, UserA19 wants to get tested.
They relay that their parents did not take kindly to the conversation and that
they still refuse to acknowledge the possibility that UserA19 has ADHD.
”...I was told to talk to my parents to try and get therapy about my
adhd.
I told them that i researched and thought that my behaviour might be
because of my adhd, they told me its nonsense, and that I should keep
in my head to do work on time. My mom literally laughed in my face
and said it wasnt like that. They dont [care], they dont even know how
this...feels or how adhd makes my mind work but they think they know
better. They KNOW i have ADHD but refuse any connection of my
school problems with it, and just say that my problems in school are
all linked to me not really wanting to work. Im done, i’ve tried, but i
really dont know what to do anymore.” - (UserA19, 11/13/2017)
• Life Organization & Routines - The topic of life organization and routines was
relatively common on all subreddits, however the general advice being given and
the themes of the discussion varied between the subreddits. Life organization and
routines contained themes of general lifestyle improvements advice and ideas, orga-
nization techniques, healthy and consistent eating habits and schedules, and general
73
advice and discussion related to exercise.
– Lifestyle Improvements - Lifestyle improvements was the most common theme
in this topic found between the 3 subreddits and was the theme that had the most
posts out of any of the other themes found in this topic. Discussion of lifestyle
improvements varied by subreddit. On r/ADHD, discussions of lifestyle im-
provements revolved around users offering advice on proper medication man-
agement, strategies for tackling symptoms of ADHD without medication such
as meditation, and tips for how best to maintain a proper morning or sleep
schedule. In one post, a user who recently had started taking Adderall and
asked about the possibly that Adderall was exaggerated their hypersensitivity
to sound and asks the users of the subreddit for advice. UserA20 replies, giving
step by step advice for how the original poster can adequately manage these
issues when taking medication.
”I can only speak as someone who also takes dex, I am not a medical
professional or anything of the sort.
I’ve noticed if I’m not ”doing something” while my medication is in
effect, that outside stimulus becomes frustrating. I’ve spoken to my
doc about this and his conjecture was that it may be due to the elevated
stress that stimulants cause...As for how to avoid this: I’ve been given
the mindfulness/meditation speech a thousand times by my doc...[I]t
has very much helped center me and focus on what I need to be focus-
ing on...
First: Slow down and take measured breaths.
Second: Slowly scan your surroundings, and take note of 1 object in
particular, give it a brief description in your head, pause, then move to
another object. Repeat this 4 times.
Third: Open your ears and listen to your surroundings, take note of
one sound, give it a brief description in your head, pause, then move
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to another sound. Repeat this 4 times.
Fourth: Take note of what you feel, your socks, your shirt, maybe your
wrist watch, pick one and give the feeling a brief description in your
head, pause, then move to another feeling. Repeat this 4 times.
Then repeat the second third and fourth steps but with 4 experiences
for each of your senses, then 3. I’d recommend doing this for 2 and 1,
but only if you have time. Make sure you’re taking calm breaths the
entire time.
The purpose of the exercise I’ve been told is to help re-center peo-
ple with anxiety so they can get through panic attacks. For me, it
really helps me come to terms with my environment. When I’ve ac-
knowledged my surroundings, I no longer feel as drawn to random
interruptions, I can go about my business unimpeded...” - (UserA20,
3/24/2018)
On r/Blind, posts concerning the theme of lifestyle improvements focused tips
and advice for cooking, cleaning, adjusting to vision loss, and reading to their
children. In one post, a user with a visual impairment asks for advice on how
best to cook with a frying pan and receives advice from UserB18, another visu-
ally impaired user, replies to this post offering up an explanation for how best
to do so based on their experiences.
”It’s all about timing, spatial awareness, and experience. I use an Ove
Glove, kevlar and silicone based gloves that allow me to manipulate
hot meat without getting burned, or at least provide a hand as I’m
trying to turn and flip things with spatulas and tongs.
For eggs and general sauteing, I use a standard silicone spatula to push
things around and stir, and I pay attention to the resistance I’m feeling
to guage how done my eggs are. I can feel onion and other veggies
softening up through tactile feedback from a spatula, and for all things,
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I have timers nearby...If you cook a mir pois on medium-high heat in
olive oil for 5 minutes, you can feel the difference in the restistance of
the contents in the pan as you stir, plus take in the smells as well since
that is also a great indicator of how things are cooking.
So get your timing down for whatever you are trying to cook, get your
heat right, use Ove Gloves to help with your food manipulation, use
spatter guards, smell how well things are cooking, and don’t be afraid
to touch the surface of meat when it’s in the pan to tell it’s doneness.
I’ll use my bare fingers to steady a fillet of fish or meat as I get a
spatula under it and make sure I flip it well. Quick touches, confident
manipulation, all that comes with experience.” - (UserB18, 6/19/2019)
On r/disability, posts discussing lifestyle improvements involved discussions of
dealing with boredom, taking care of oneself if a caretaker is not available, tips
for clothing that is conducive to disability concerns, finding a therapist, and tips
for caring for family members with a recent disability. In one post, a user asks
about alternatives to care-taking because their primary caretaker, their husband,
is going away for an extended period of time and they are worried about their
ability to take care of themselves without their husband. They mention that they
can’t afford a full caretaker during this time because of the expense. UserD18
replies to the post offering a number of suggestions for potential autonomous
care-taking.
”One thing that might help a bit is looking into devices that can help
reduce as much strain as possible. This might be out of budget as well
though, but bathing tools / stuff for the litter box / making sure you
can make basic meals or have them prepared ahead of time would be
good. You may need to compromise with spongebaths / wet wipes
baths, ordering out, etc when you cannot face something harder. Can
you ask a neighbor for help? Obviously they may want to be paid,
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but perhaps it’ll be cheaper than a full time caregiver.” - (UserD18,
7/25/2019)
– Organization Techniques - Organization techniques appeared most often on
r/ADHD, but did appear a select number of times on Blind and very occasion-
ally on r/disability. When discussing organization techniques, users discussed
tips for consistently remembering important items like keys or medication, or-
ganizing important items like computer work or class notes, and good time or-
ganization habits such as routines like morning or evening rituals, hygiene, and
studying. One user makes a post regarding their frustration at getting routines
to a point where they feel regular. They discuss a struggle in getting routines to
stick and are starting to feel that the act of getting routines together is hopeless.
UserA21 replies to this post, offering up the ways they help keep themselves
to their routines and general advice on organizing around a routine to make it
more manageable.
”...My best suggestion is to put in the work ahead of time to make
these decisions as easy as possible when you need to make them.
For instance, I sometimes go to bed with my workout clothes on and
have everything else I need to go for a run (apartment key, socks,
sneakers, gps watch) sitting by the door, ready to go. I pre-prep
lunches and dinners ahead of time. This doesn’t always work - some-
times I procrastinate on the prep work until another week of sleeping
in and take-out has gone by. But this does help me get out the door
and eating healthy, homemade meals more often than if I tried to do
all the prep at the same time as when I need to take the actual action.
Another thing is to take things one small step at a time. When I’m
lying in bed at 6 AM and think ”I need to go for a run,” that rarely
works. Instead, I think, ”I need to sit up.” Okay, that I can do. Now,
swing my legs over the side of the bed. Then stand. Then walk to my
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shoes. One baby step at a time. Even if you only get dressed and get to
the door, you got further than if you’d just stayed in bed.” - (UserA21,
3/26/2017)
In other post, a user asks members of r/Blind how they organize their studying
time along with notes and any audio archives. The original poster is sighted but
claims to be asking for research and development purposes for possible technol-
ogy that may help with this purpose. The post receives a reply from UserB19,
a visually impaired user, who goes into detail about how they went about orga-
nizing their work for school and makes suggestions on how this process could
have been improved.
”I recorded all my lectures in university, with the best of intentions.
Later in the week, I’d listen to them a second time, while transcribing
them! It would be a good way to study, and to organize my record-
ings...The problem with taking notes during the class itself is that key-
boards are loud, and if you use speech, you need to have headphones
on one ear, and that distracts you from actively listening to the lecture,
or participating in the class. Some universities offer paid note takers
to help with this, but mine only offered them to students with physical
challenges, not blind students.
Transcription services are available today, but though I haven’t used
them much, I don’t think they cut it. What we need is something
where we can search the auto generated text transcript, and then play
the lecture audio starting from the word or phrase we found. That way,
a blind student while in the class, would only need to note down a list
of unique sounding keywords. After class, the student could search
for those keywords that seemed important, and make more complete
notes from the recording. That would be much less work than hav-
ing to listen to the entire lecture a second time, so it would be more
78
reasonable to expect that students would actually do it. Also, if por-
tions of the transcript were accurate enough, we could just copy those
directly into our class notes.” - (UserB19, 3/28/2018)
– Eating Habits - Eating habits as theme appeared exclusively from posts within
ADHD and usually centered around posts wherein people discussed difficul-
ties eating or maintaining a diet due to either the symptoms of ADHD or the
medication used to treat it. Users frequently discuss problems in remembering
to eat, feeling hungry, or having to force themselves to eat despite not feeling
physically able to do so. Replies to these posts either share tips for best eating
habits or talk about their own difficulties eating. In one post, a user says that
they no longer feel hungry because they take Adderall. UserA22 replies to this
post, sharing their insight and history about eating with ADHD medications.
”I’ve had a lot of problems with this in the past. I wouldn’t eat, and
when the meds wore off, I would be so hungry that I would feel sick
and not want to eat. Eating before you take your adderall can help.
What has helped me is setting a time to eat lunch and dinner and eating
even if I’m not hungry. Cuz food always tastes good even if I’m not
hungry.” - (UserA22, 4/16/2015)
Another user made a post as a reminder to other members of the subreddit
telling them to make sure they do not forget to eat. UserA23 replies, saying that
they forget to eat, even when hungry, while on medication.
”This is actually a problem for me when I’m on meds. I forget to eat
even though I’m hungry.” - (UserA23, 10/11/2016)
– Exercise - Exercise as a theme appeared all subreddits and usually involved
users asking questions about getting workout or cardio routines started or fea-
tured specific discussion related to how to work out or do cardio if one has a
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disability. The exercise discussion on r/disability focused specifically on exer-
cising with a wheelchair or a motor disability. UserD19 posts about their dif-
ficulties losing weight and ask questions about being able to lose weight while
having a motor disability but without exercise. They complain about the way
they feel their spina bifida has affected their life and say that they want to be
able to lose weight but are unable to do much because of the limitations of their
disability.
”Is it possible to lose weight without exercising or dieting?
Frankly...I’m too...lazy to get much (if any, let aloe sufficient) exercise,
and
I don’t want to change/limit my diet because...as stupid as it may
sound, I feel like so much of what ”most people” get to do in life
was ”stolen” from me by my disability (being able to walk normally
- let alone run, playing sports, driving a car, having sex, etc.)...I don’t
want my disability to ”take” from me the ability to a lot of foods either
because their ”unhealthy” or whatever. I know this is unreasonable but
it’s how I feel dammit, lol.
And as far as exercising goes, I’m quite simply too lazy to do the little
bit of exercising my disability (Spina Bifida) will actually allow me to
do, and even when I do try to exercise I feel like I’m not really burning
enough calories to make a legit difference as far as burning fat goes...”
- (UserD19, 10/19/2019)
On r/blind, a blind user asks how members of the subreddit are able to use the
gym independently and receives a reply from UserB20 detailing their experi-
ences.
”I go to the gym independently ! When I first went, I had a guy from
the staff show me around every machine. Gyms are usually organized
in a way that makes sense (like my gym is organized in four sections
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and in rows. Every row has a different machine, free weights are lined
on the right wall of the gym and them are organized from lightest to
heaviest, bunch of little stuff like that that stays consistent). I had the
staff member explain the layout to me, i wrote it down on my phone
and memorized it, now I know where every machine is. I never went
to a gym before loosing my sight so I was double confused because I
didn’t know what the machines did anyway. Got the dude to explain
how they work and how to load the weights and now I just know how to
do it it’s not that hard when you get used to it” - (UserB19, 12/22/2019)
• Disabilities - The topic of disabilities was present on all three subreddits, and was
a wide-ranging topic overall. Discussion of Disability included themes of questions
regarding disability, treatment, or benefits, commiseration over the negative aspects
of a disability, co-morbidity of multiple disabilities in a given person, general dis-
cussion about disability culture, and sharing of diagnoses or information related to
diagnoses among users.
– Disability Questions - Questions regarding disability appeared on all three sub-
reddits with the questions being asked differing heavily between the three. On
r/ADHD, users asked questions related to ADHD such as the possibility of tack-
ling the disorder without medication, women asking about how ADHD symp-
toms and menstrual cycles affect each other, users asking about possible issues
in their lives being symptoms of ADHD, questions about symptoms themselves,
and users asking others to share the details of their symptoms to better under-
stand their own. In one post, a users asks members of the subreddit with pri-
marily inattentive ADHD to share their experiences and to see if their symptoms
line up with the symptoms of others. UserA24 explains their own experiences
with primarily inattentive ADHD and details their thought processes and how
the disorder affects their life on a daily basis.
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”I daydreamed a lot in school. I kept to myself a lot. When I talk I
miss social cues like when to speak. I interrupt people. As a result I
tend to stay silent. Sometimes I forget my sentence in the middle of
speaking it, or I forget an everyday word and people look at me like
I’m crazy because I’m describing something ordinary.
My mind feels like a music show, talk show, and TV is on simultane-
ously. I thought this was normal.
I lose things several times a day. At work I seem to leave my water
bottle everywhere except my office.
The one thing I loved doing at work was the thing I did really well. I
could do it all day. The other stuff - forget it. I was organized on the
computer but not with paper...” - (UserA24, 9/17/2015)
On r/Blind, questions about disability were focused around how to do specific
tasks while being blind either from other visually impaired users or from sighted
users looking to understand being visually impaired. In one post, a sighted
user asks members of r/Blind what household takes they struggle with most.
UserB20 responds, talking about the difficulties that their boyfriend has with
cleaning.
”Rinsing dishes is hard for my boyfriend because of sharp items. Even
if he is only grabbing stuff to put in the dishwasher, a knife faced in
the wrong direction can seriously injure him.
When we buy matching sets of stuff, like a salt and pepper shaker, or
a shampoo and conditioner bottle, he struggles figuring out which is
which since the bottles will be the same. So lots of cleaning products
feel exactly the same to him.” - (UserB20, 2/03/2017)
on r/disability, questions of disability focused on issues with disability benefits
and how best to proceed if an application is rejected or a person is stuck waiting,
discussion of how users feel about their disability and what they do if they feel
82
others portray that disability in a negative light, and discussions of how to talk
to children about disability. In one post, a user asks how to explain the fact they
are in a wheelchair to children who ask, because they have been asked before
and are unsure of what to say. The post recieves a reply from UserD20, who
discusses how they explained their motor disability to their young niece.
”...I told her the phone from my head to my legs is broken, so my legs
don’t hear when my brain tells them to move. So my chair lets me
move my legs around with me anyway. (She’s not quite 4. This is my
preschooler answer.)” - (UserD20, 3/08/2017)
– Commiseration - The topic of commiseration was most common on r/ADHD,
though it did appear on the other subreddits rarely. Users discussing commiser-
ation would usually describe issues they have that they feel are because of their
disability diagnosis or because of ADHD symptoms. These posts do not typi-
cally ask for advice, support, or encouragement, instead focusing on releasing
frustrations by sharing their personal struggles with others who may understand
and empathize or sympathize. In one post, UserA25 rants about the physical,
emotional, and social issues they face routinely because of their ADHD.
”What I’m confused about is that I’ve never really found that my fo-
cus drifts away...The times when I haven’t paid attention were mostly
by choice, like once when I was obsessed for about a month about
the possibility of having ADHD. I couldn’t ignore the thought during
some classes and analyzed how much I fidgeted. I didn’t care about
school much, and spent most time at home researching about ADHD.
Most of my distractions seem to come from me wanting to pay atten-
tion but then some sort of noise interrupts my train of thought and I
have to start all over again.
Group discussion are difficult not because I can’t pay attention but
because I’m not sure when I should speak...A lot of times, I know
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what’s happening in class, but it still seems foggy because it hasn’t
been explained in detail.
I’ve got a hard time making friends. I can listen to them talk for a long
time, I try to be interested and ask questions. But sometimes I find it
difficult to be interested in their teenage issues because sometimes it
doesn’t really make sense to me.
And they always drift away when they find other friends who relate to
them...Since I started my ADHD meds, I’m less interested in talking
to people. I’d rather skip my lunch and go to the library. My interest in
making friends has gone away. I get annoyed now when there’s some
’teenage’ conversation going on during a group discussion, mostly be-
cause I envy that I don’t understand them.
Despite my meds helping tons, I’m less interested in trying to fake
social skills. In classrooms, I can focus on thinking about ideas, but I
get frustrated when the other kids aren’t on task; and if they are, I have
a hard time interjecting during the conversation and explaining things
accurately. I can block out sensory distractions now and my mind sorts
useless thoughts out, but conveying my ideas is still difficult. Thus, I
get very low marks when it comes to participation...Since my teen
years, every time we have to find a partner in class, I’m left alone.
Recently, even a teacher said that no one would want to work with me.
Things have been getting more difficult in school due to the work-
load, and almost every week, I feel like losing control and crying and
screaming...It’s horrible since I don’t have any close friends to help
me in such situations.” - (UserA25, 1/05/2017)
– Co-morbidity - Co-morbidity is the existence of multiple disorders, illnesses,
or conditions in a given person. Discussion of co-morbidity was a topic most
common to ADHD but occasionally appeared on the other subreddits. The types
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of co-morbid conditions being discussed involved generalized anxiety disorder,
depression, autism spectrum disorder, heart conditions, motor disabilities, sen-
sory processing disorder, obsessive compulsive disorder, insomnia, alcoholism,
eating disorders, diabetes, and unnamed developmental disorders. UserA26 de-
scribes their history with ADHD, depression, and alcoholism and details the
difficult situation they are now in because of this history.
”I’m almost a year sober. Getting sober has been a tough journey, I’ve
spent the best part of 3 years relapsing, countless hospital admissions,
trialing anti depressants, ECT, inpatient and outpatient for an eating
disorder. I’m now weight restored, and I’d say 80% recovered.
The antidepressants were making me worse, I gradually weened off
them recently (Cymbalta) which was 3 weeks of hell in itself. I feel
for the first time in years that I have a clear idea of what I’m actually
like, how my brain works without the cloud of booze, drugs or an ED
hovering above. This is both a relief and terrifying.
I’m coming to realise this is what may be my problem. I relate 100%
to the ADHD diagnosis.
I was diagnosed with ADHD as a kid, and took Ritalin for years. My
mum took me off the meds after a big scare campaign that was big at
the time about medicating kids with ADHD meds. I wish she didn’t,
apparently they changed me for the better. I think I wouldn’t have
failed school and ended up self medicating with alcohol if I had con-
tinued.
I live in Australia where I’ve heard it’s pretty hard to get a diagnosed.
I know my chances are probably non existent with my past history,
but considering I was diagnosed as a child I might have a chance. I’m
not chasing drugs, I’m not out to lose weight, without getting into an
essay long detail of my symptoms and woes, I think a diagnosis would
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change my life...” - (UserA26, 7/18/2019)
– Disability Culture Discussion - Discussion of disability culture as a theme
was found most often on r/disability, but it did appear once on r/ADHD and
occasionally on r/Blind. Disability culture discussion included users discussing
disability as it appears in media such as movies and TV, discussion of con-
troversial treatments and ”cures” for disability, infantilization of people with
disabilities, and discussion of ”passing” as an able-bodied person. UserD21 de-
scribes their frustration because they say they are not visibly disabled but have
OCD and rickets (a disorder causing soft bones in children) and they feel they
are judged by people who might not be totally aware of their disability.
”Is anyone else not “obviously disabled”? I don’t know whether to be
annoyed for it, or grateful for it..
I’ve had way too many occasions where people have assumed that I’m
being rude for moving slowly through a hallway or any other walkway,
or when teachers (I’m currently in high school) get upset at me for
not making it to their class on time like everyone else. I even have a
medical pass, but it still doesn’t stop judgement. Sometimes I feel like
if I were “obviously disabled” I wouldn’t be judged as much for being
unable to move nearly as quickly when I should be near my physical
peak.” - (UserD21, 1/12/2019)
In another post, users discuss the ethics of casting non-disabled people in roles
meant to be disabled characters. A user shares an article about In The Dark, a
show featuring a blind main character being played by a sighted actress. Users
argue whether they feel it is right to cast a non-blind actress in the role. One user
repeatedly posits that since an actor’s job is to be able to fake life experiences
then it should not be a problem for an actor to pretend to be blind. This comment
receives a succinct reply from UserB21, a blind user, on their opinion of the
matter.
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”The thing is, if you’re creating a show about the actual experience
of blindness, and you can’t find an actual blind person who can con-
vincingly play your lead character, that should perhaps raise a warn-
ing flag. Maybe your lead character as written doesn’t do a good
job of reflecting the experiences of actual blind people.” - (UserB21,
4/06/2019)
– Diagnosis Sharing - The sharing of information related to a disability diagnosis
was found on r/ADHD and r/Blind. Diagnosis sharing involved people sharing
their happiness are receiving a diagnosis for ADHD or being excited to start
treatment, asking questions about the effectiveness of diagnoses, and sharing
symptoms of their disabilities. In one post, UserB22 thanks the members of
r/Blind for previous support and discusses the benefits of using a cane that they
are now using because of the recommendations of users of r/Blind.
”Thanks so much for everyone’s feedback!
My first morning with the cane, I went to the 7-11 store I always go
to in the morning on my way to work. It’s always packed and that
morning was no different. I walked over to the iced coffee as I do every
morning, got my cup and as I slid it under the ”mocha” tap, I noticed
some kind of things taped to the dispenser handles. As I leaned in to
see what they said, I heard a voice behind me say ”mocha” as I turned
he said ”the other one’s vanilla”. Turns out the little paper simply said
”press down” but I was thrilled at this random assistance, even if it
wasn’t exactly what I needed at the time. I made sure to say ”thank
you”.
Today, I was walking across the street to get lunch. As I exited the
building, a vehicle was pulling through the parking lot. It stopped.
This is always the worst for me. I can see the vehicle, but I never
know if the driver is waving me on or not. I don’t want to just walk
87
out so when they stop, I usually try to look away until they go (and
I always feel like an asshole, especially if they were waving me on).
Today though a guy behind me said ”go ahead” and then quickly said
”wait” as both he and the driver realized simultaneously that I couldn’t
see if they were waving or not.
I’ve also noticed strangers tend to say ”Hi” more when they see me
and certainly seem friendlier versus the usual expressionless silence
of stranger passing...I’m pretty excited to see such a dramatic change
so suddenly. Again, thank you all so much!” - (UserB22, 5/07/2015)
4.1.2 Research Question 2 - Which topics receive the most interaction
over time per subreddit?
This research question was answered by analyzing the full topic counts of each subreddit
over time which can be found in tables 4.1, 4.2, and 4.3.
• r/Blind - In 2015 the most talked about topic of discussion on r/Blind was Social Sit-
uations, which appeared in 697 posts (34% of all posts in 2015), followed closely by
Accessibility which appeared in 477 posts (23% of all posts in 2015), with Disability
being third with a total of 391 posts (19% of all posts in 2015).
By 2016, the total number of posts in r/Blind had increased from 2,059 to 5,114, a
60% increase from 2015. Because of this increase in posts, every single topic count in
r/Blind had also increased by large factors in the range of 49% (Work & Education) to
65% (Disability). The ranking of the most popular topics remained the same: Social
Situations, then Accessibility, then Disability. Social Situations still remained the
most discussed topic at 1,723 tagged posts (34% of all topics in 2016, same as 2015)
and in total increased by 59% while Accessibility increased from 477 to 1,140 tagged
posts (22% of all posts in 2016, down 1% from 2015), a 58% increase. Despite being
third, Disability only holds this ranking by a low margin as the topic was tagged in
1,128 posts (22% of all posts in 2016, a 3% increase in distribution from 2015), only
88
Topic Counts of r/Blind
M S &
M
F & S S W &
E
S A S S L O &
R
D Year
Total
2015 118
[6%]
40
[2%]
152
[7%]
119
[6%]
477
[23%]
697
[34%]
65
[3%]
391
[19%]
2,059
2016 285
[6%]
81
[2%]
300
[6%]
320
[6%]
1,140
[22%]
1,723
[34%]
137
[3%]
1,128
[22%]
5,114
2017 431
[7%]
104
[2%]
310
[5%]
408
[7%]
1,321
[22%]
1,988
[34%]
172
[3%]
1,179
[20%]
5,913
2018 566
[7%]
157
[2%]
517
[6%]
491
[6%]
1,830
[23%]
2,767
[34%]
238
[3%]
1,499
[19%]
8,065
2019 2,717
[16%]
311
[2%]
1,162
[7%]
928
[5%]
3,514
[20%]
6,262
[36%]
613
[4%]
3,183
[18%]
17,290
Total 4,117
[11%]
693
[2%]
2,441
[6%]
2,266
[6%]
8,282
[22%]
13,437
[35%]
1,225
[3%]
7,380
[19%]
38,441
Table 4.1: The total number of tagged posts under a topic per year in r/Blind. All topic
names are abbreviated by the first letter of each word. The farthest right column is the
total number of posts for that year and each percentage in brackets refers to that topic’s
percentage of the total number of posts for that year. All percentages have been rounded
up to the nearest whole number.
12 posts behind Accessibility. Disability also holds the largest increase in tagged
posts from 2015 to 2016, with an increase to 65% of tagged posts. All three top
ranked topics are the only tagged topics in r/Blind to reach over 1,000 posts, with
Support as the next highest topic after Disability at a total of 320 posts, which was
only 20 posts larger than Work & Education’s total.
In 2017 the total number of tagged posts per topic had again increased, but the in-
crease was less severe than the increase from 2015 to 2016, going from 5,114 to 5,913
posts, a 14% increase. As a result, the number of tagged posts per topic increased by
much lower margins of 3% (Work & Education) to 34% (Medical System & Medica-
tion). The top three topics were once again the same three topics in the same ranking:
Social Situations, Accessibility, and Disability. Numbers of posts tagged with Social
89
Situations increased by 13% to 1,988 (still 34% of all posts for the year). Accessi-
bility saw a 14% increase in tagged posts to 1,321 (again, 22% of all posts in 2017).
Disability, despite being the third highest topic, increased by a much smaller margin
than 2016, 4% for a total of 1,179 posts (20% of all posts, 2% decrease from teh
previous year.) All three of the largest topics again contained 1,000 total posts but
the next largest topic after Disability was instead Medical System & Medication in
2017, which had increased 34% from the previous year, from 285 to 431, the largest
single relative increase in a topic from 2016 to 2017.
In 2018 the total number of tagged posts per topic had again seen a larger increase
than in 2017, going from 5,913 to 8,065 posts, a 27% increase. The total number
of tagged posts per topic increased to the range of 17% (Support) to 42% (Work &
Education). The three largest ranked topics remained the same once again: Social
Situations, Accessibility, and Disability. Social Situations increased by a margin of
28% to 2,767 posts (34% of all posts in 2018, again unchanged from the previous
year), the highest number for any topic and also the only topic so far to be tagged
in over 2,000 posts. Accessibility also increased by 28% to 1,830 posts (23% of all
posts in 2018, a 1% increase from the previous year) and was the closest topic to
2,000 tagged posts. Disability increased by 21% to 1,499 posts (19% of all posts in
2018, a 1% decrease from the previous year). No topics besides the Social Situations,
Accessibility, and Disability reached anywhere close to 1,000 total posts. The next
largest topic after Disability was again Medical System & Medication at 566 posts
(7% of all posts in 2018, no change from the previous year).
2019 saw another dramatic increase in total number of posts with the number going
from 8,065 to 17,290, a 53% increase overall, the second highest increase from year
to year since 2015 to 2016. The total number of tagged posts per topic increased
in frequency from 47% (Support) to 79% (Medical System & Medication). The
top three categories remained unchanged from the previous year: Social Situations,
Accessibility, and Disability. Social Situations increased 56% from 2018, bringing
90
the total to 6,262 posts (36% of all posts in 2019, a 2% increase from the previous
year and also the only change in distribution for this topic from a previous year).
Social Situations was also the only topic in r/Blind to reach over 5,000 total posts.
Accessibility increased by 48% going from 1,830 to 3,514 total posts (20% of all
posts in 2019, a 3% decrease from the previous year) making Accessibility the second
topic to reach over 3,000 posts. Disability saw a marked increase of 53% for a total
of 3,183 posts (18% of all posts in 2019, a 1% decrease from the previous year),
becoming the third topic to reach 3,000 posts. Despite the top rankings remaining
the same, Medical System & Medication had the most dramatic increase in topics in
all of the years of r/Blind, with total number of tagged posts for the year increasing
79% for a total of 2,717 posts (16% of all posts in 2019, a 9% increase in distribution
from the previous year and also the largest increase for a topic from year to year in
r/Blind). Because of this increase, Medical System & Medication became the fourth
topic to reach over 2,000 posts. Work & Education also saw a large increase of tagged
posts with a 56% increase, bringing its total to 1,162 posts (7% of all posts in 2019, a
1% increase from the previous year) and making it the fifth topic to reach over 1,000
posts. By 2019, a total of 5 of the 8 categories had reached over 1,000 posts.
The top three topics never changed ranking from year to year, when all posts from
2015 to 2019 were totalled the ranking of total top tagged categories remained at:
Social Situations (13,437), Accessibility (8,282), and Disability (7,380). In total, So-
cial Situations accounted for 35% of all tagged posts in r/Blind from 2015 to 2019,
with Accessibility accounting for 22% and Disability accounting for 19%. Medical
System & Medication was the next highest distributed topic, appearing in 11% of all
posts in r/Blind from 2015 to 2019, with the large increased in tagged posts in 2019
helping to push the topic over the edge in terms of percentage and ranking. The only
topic not to reach 1,000 posts or more when totalled for all 5 years of r/Blind was
Financial & Social Services.
91
Topic Counts of r/disability
M S &
M
F & S S W &
E
S A S S L O & R D Year
Total
2015 706
[10%]
812
[11%]
434
[6%]
421
[6%]
727
[10%]
2,786
[38%]
293
[4%]
1,190
[16%]
7,369
2016 1,035
[13%]
1,138
[15%]
500
[6%]
374
[5%]
678
[9%]
2,650
[34%]
246
[3%]
1,112
[14%]
7,733
2017 1,188
[11%]
1,452
[13%]
692
[6%]
554
[5%]
959
[9%]
3,962
[36%]
411
[4%]
1,668
[15%]
10,886
2018 1,907
[11%]
2,276
[14%]
1,118
[7%]
837
[5%]
1,374
[8%]
5,424
[33%]
704
[4%]
3,019
[18%]
16,659
2019 2,893
[10%]
2,880
[10%]
1,817
[6%]
1,222
[4%]
2,584
[9%]
10,393
[37%]
1,203
[4%]
5,315
[19%]
28,307
Total 7,729
[11%]
8,558
[12%]
4,561
[6%]
3,408
[5%]
6,322
[9%]
25,215
[36%]
2,857
[4%]
12,304
[17%]
70,954
Table 4.2: The total number of tagged posts under a topic per year in r/disability. All topic
names are abbreviated by the first letter of each word. The farthest right column is the
total number of posts for that year and each percentage in brackets refers to that topic’s
percentage of the total number of posts for that year. All percentages have been rounded
up to the nearest whole number.
• r/disability - In 2015 the most popular topics on r/disability in order were: Social
Situations, Disability, and Financial & Social Services respectively. Social Situa-
tions was the absolute largest topic in 2015, totalling 2,786 posts (38% of all posts
on r/disability in 2015), more than double the amount of Disability, which was in
second place with 1,190 posts (16% of all posts in the subreddit in 2015). Only So-
cial Situations and Disability contained more than 1,000 posts. Despite Financial &
Social Services being third, it contained only 812 posts (11% of posts in 2015) which
is close in number to the fourth and fifth highest rated topics: Accessibility with 727
and Medical System & Medication with 706 (both topics individually account for
10% of posts), respectively.
In 2016, the number of posts overall increased from 7,369 to 7,733, only a 4% in-
crease in total number of tagged posts from the previous year. Only 3 of topics
92
increased in number of tagged posts by margins of 13% (Work & Education), 29%
(Financial & Social Services), and 32% (Medical System & Medication). Every
other topic saw a decrease in the number posts tagged to a topic within a range of
-5% (Social Situations) to -16% (Life Organization & Routines). The top topics still
ended up as the same three topics but now in a different order: Social Situations,
Financial & Social Services, and Disability. Social Situations lost 5% of posts from
2015 to 2016 and still managed to remain the top category by a wide margin, with
2,650 posts (34% of all posts in 2016, a 4% decrease in distribution from the pre-
vious year) it was still the only category that appeared over 2,000 times. Disability
lost 7% of its tagged posts from 2015 to 2016 which dropped it to 1,112 posts (14%
of all tagged posts in 2016, a 2% decrease in distribution from the previous year).
Financial & Social Services saw a massive increase of 29% to bring its total to 1,138
posts (15% of all tagged posts in 2016, a 4% increase in distribution from the pre-
vious year) and giving it a 26 post lead over Disability to shift the topic rankings.
Both Medical System & Medication and Financial & Social Services had the highest
increase overall from 2015 to 2016, with both now having more than 1,000 posts.
In 2017 the number of posts in all topics increased from 7,733 to 10,886, a 29%
total increase in number of tagged posts from 2016 to 2017. The total number of
tagged posts for topic all increased this time within a range of 13% (Medical Sys-
tem & Medication) to 40% (Life Organization & Routines). The top topics shifted
order again but remained the same three topics: Social Situations, Disability, and Fi-
nancial & Social Services. Social Situations posts increased by 33% to 3,962 (36%
of all tagged posts in 2017, a 2% increase in distribution from the previous year),
making it the first category to breach over 2,000 and 3,000 posts in r/disability. Dis-
ability reclaimed second place, increasing 33% from 2016 to 1,668 posts (15% of all
tagged posts in 2017, a 1% increase in distribution from the previous year). Finan-
cial & Social Services followed closely behind Disability with an increase of 22%
to 1,452 posts (13% of all tagged posts in 2017, a 2% decrease in distribution from
93
the previous year), separating them by a a relatively small gap of 216 total posts.
Life Organization & Routines had the largest increase from 2016 to 2017 with 40%
but only increased from 246 to 411 posts (4% of all posts in 2017, a 1% increase in
distribution from the previous year), putting it in last place for topics in 2017. No
topics that had less than 1,000 posts increased to be over 1,000 posts from 2016 to
2017 in r/Blind.
2018 saw a dramatic increase in posts on r/disability, with the total number of tagged
posts increasing from 10,886 to 16,659, a 35% increase from the previous year. All
topics increased their total number of tagged posts by margins of 27% (Social Sit-
uations) to 45% (Disability). The ordering of the top topics did not change despite
the overall increase in post volume, once again the ranking of top topics was Social
Situations, Disability, and Financial & Social Services. Social Services increased
27% for a total of 5,424 posts (33% of all tagged posts in 2018, a 3% decrease in
distribution from the previous year), and became the first and only topic to reach the
4,000 and 5,000 post marks. Disability had the largest increase in number of posts
from 2017 to 2018 with a increase of 45% to bring its total in 2018 to 3,019 posts
(18% of all tagged topics in 2018, a 3% increase in distribution from the previous
year). Disability also became the second topic in r/disability to reach over 3,000
posts. Financial & Social Services also saw a marked increase of 36% bringing its
2018 total to 2,276 posts (14% of all tagged posts in 2018, a 1% increase in distribu-
tion from the previous year), and became the third topic in r/disability to reach over
2,000 posts. The gap between Disability and Financial & Social Services widened
considerably, going from 216 in 2017 to 743 in 2018. All topics except for Support
and Life Organization & Routines increased to over 1,000 posts in 2018.
2019 saw the largest single increase in total tagged posts from year to year, going
from 16,659 to 28,307, a 41% increase in total posts. The total number of tagged
posts for each topic increased within a range of 21% (Financial & Social Services)
94
to 48% (Social Situations). The top three topics changed slightly from the previ-
ous year: Social Situations, Disability, and Medical System & Medication, which
claimed the third place spot from Financial & Social Services. Posts tagged with
Social Situations increased by the largest amount of any topic from year to year on
r/disability, increasing 48% to 10,393 posts (37% of all tagged posts in 2019, a 4%
increase in distribution from the previous year). Disability also a saw marked in-
creased in tagged posts going up 43% from 2018 to bring the number of tagged posts
to 5,315 posts (19% of all tagged posts in 2019, a 1% increase in distribution from
the previous year.) Medical System & Medication posts increased by 34% from the
previous year, bringing the total to 2,893 posts (10% of all posts in 2019, a 1% de-
crease in distribution from the previous year). Despite Medical System & Medication
overtaking Financial & Social Services for third place, the two are only separated by
a total of 13 posts. Two topics with less than 2,000 posts, Medical System & Med-
ication and Accessibility, both increased to total more 2,000 posts. Two topics that
had less than 1,000 posts in 2018, Life Organization & Routines and Support, both
increased to be over 1,000 posts. By 2019 all tagged topics reached a minimum of
1,000 posts.
The rankings for the top three topics for all years changed several times. Although
Social Situations was first every year, second and third place changed multiple times
in different years. When all counts of tagged topics were totalled together for all 5
years of the dataset, the top topics were: Social Situations, Disability, and Financial
& Social Services. Social Situations was the largest topic by a wide margin with a
total of 25,215 tagged posts under this topic (36% of all posts on r/disability from
2015 to 2019). Disability was the second largest topic counted overall at a total of
12,304 tagged posts (17% of all posts on r/disability form 2015 to 2019), putting
second place a total 12,911 posts behind first place. Disability was ranked second
every year except for 2016 where it was ranked third. Financial & Social Services,
the third largest topic of r/disability, had a total of 8,558 tagged posts (12% of all
95
Topic Counts of r/ADHD
M S &
M
F & S S W &
E
S A S S L O & R D Year
Total
2015 36,796
[27%]
1,466
[1%]
8,200
[6%]
4,312
[3%]
3,954
[3%]
38,540
[28%]
14,482
[10%]
31,055
[22%]
138,805
2016 44,745
[24%]
2,107
[1%]
11,573
[6%]
5,631
[3%]
5,686
[3%]
53,003
[29%]
19,733
[11%]
39,973
[22%]
182,451
2017 56,501
[23%]
2,993
[1%]
15,793
[6%]
8,478
[3%]
7,907
[3%]
73,768
[30%]
27,065
[11%]
53,517
[22%]
246,022
2018 81,959
[22%]
4,828
[1%]
23,474
[6%]
11,912
[3%]
12,305
[3%]
111,087
[30%]
41,211
[11%]
78,128
[21%]
364,904
2019 96,932
[20%]
6,911
[1%]
31,940
[7%]
17,437
[4%]
17,854
[4%]
149,538
[31%]
56,299
[12%]
107,092
[22%]
484,003
Total 316,933
[22%]
18,305
[1%]
90,980
[6%]
47,770
[3%]
47,706
[3%]
425,936
[30%]
158,790
[11%]
309,765
[22%]
1,416,185
Table 4.3: The total number of tagged posts under a topic per year in r/ADHD. All topic
names are abbreviated by the first letter of each word. The farthest right column is the
total number of posts for that year and each percentage in brackets refers to that topic’s
percentage of the total number of posts for that year. All percentages have been rounded
up to the nearest whole number
posts in r/disability from 2015-2019). Financial & Social Services appeared in third
place for 3 out of the 5 observed years of the subreddit (2015, 2017, and 2018), sec-
ond in 2016, and fourth in 2019, being replaced by Medical System & Medication
in 2019 by the aforementioned small margin. Medical System & Medication was
close behind Financial & Social Services, appearing fourth overall for all years of
the subreddit at 7,729 posts (11% of all posts on r/disability from 2015 to 2019).
• r/ADHD - In 2015 the top topics on r/ADHD were Social Situations, Medical System
& Medication, and Disability respectively. Social Situations was found to be tagged
in 38,540 posts (28% of all posts in r/ADHD in 2015). Despite Social Situations
being first, the margin for first place was narrow as Medical System & Medication
came in a close second with 36,796 posts (27% of all posts in r/ADHD in 2015), with
96
only 1,744 total posts separating them. Disability was the third most popular topic
of 2015 with its total number of tagged posts being 31,055 posts (22% of all posts
in r/ADHD in 2015). There is a gap of 16,573 posts between Disability and fourth
place, with Life Organization & Routines taking fourth place with 14,482 posts (10%
of all posts in r/ADHD in 2015).
In 2016 the number of tagged posts in r/ADHD rose 24%, from 138,805 to 182,451
posts. All topics saw a marked increase in the number of posts tagged with that topic
within the range of 18% (Medical System & Medication) to 30% (both Financial &
Social Services and Accessibility). The top topics for 2016 remained the same as the
previous year and maintained the same order: Social Situations, Medical System &
Medication, and Disability. Social Situations increased in number of tagged posts by
27% to 53,005 posts (29% of all posts in r/ADHD in 2016, a 1% increase in distri-
bution from the previous year), becoming the first topic to reach over 50,000 posts.
Medical System & Medication remained second, with an 18% increase in posts from
the previous year for a total of 44,745 posts (24% of all posts in r/ADHD in 2016,
a 3% decrease in distribution from the previous year) becoming the second topic to
reach over 40,000 posts. Disability was third with an increase of 22% bringing its
total to 39,973 posts (22% of all posts in r/ADHD in 2016, no change from the pre-
vious year in distribution). Life Organization & Routines remained fourth place with
19,733 total tagged posts in 2016.
2017 saw the total number of posts increase again, from 182,451 to 246,022 which is
a 26% increase in volume. The top three topics from the previous year remained the
same 3 topics in the same order: Social Situations, Medical System & Medication
and Disability. Social Situations increased in total number of posts by 28% for a
total of 73,768 posts (30% of all posts on r/ADHD in 2017, a 1% increase in distri-
bution from the previous year) becoming the first topic to reach 60,000 70,000 posts
simultaneously. The gap between first and second place also widened in 2017, from
an 8,258 post gap in 2016 to a now 17,267 post gap. Medical System & Medication
97
increased in number of tagged posts by 18% bringing the total in 2017 to 56,501
posts (23% of all posts in r/ADHD in 2017, a 1% decrease in distribution from the
previous year) becoming the second topic in r/ADHD to reach greater than 50,000
total posts. Disability had an increase of 32% in number of tagged posts, with the
2017 total being 53,517 posts (22% of all posts in r/ADHD in 2017, no change in
distribution from the previous year, becoming the third topic in r/ADHD to reach
greater than 50,000 posts. Life Organization & Routines remained in fourth place
with 27,065 posts, becoming the fourth topic to reach over 20,000 posts.
2018 had the largest increase in the number of posts on r/ADHD in a given year,
going from 246,022 to 364,604, a 33% increase in post volume. The top three topics
from the previous remained the same with the same order: Social Situations, Medical
System & Medication, and Disability. Social Situations saw a 34% increase in total
number of posts from the previous bringing the tally to 111,087 posts (30% of all
posts on r/ADHD in 2018 with no increase in distribution from the previous year)
which also made Social Situations the first topic to reach over 100,000 total posts.
Medical System & Medication saw a 31% increase in total number of tagged posts
bringing the 2018 total to 81,959 (22% of all posts in r/ADHD in 2018, a 1% decrease
in distribution from the previous year) and became the second topic to reach greater
than 80,000 posts. Although Medical System & Medication was second, the gap
between second and third is narrow at 3,831 posts, a relatively small gap for r/ADHD.
Disability increased in number of tagged posts by 32% bringing the total to 78,128
posts (21% of all posts in r/ADHD in 2018, a 1% decrease in distribution from the
previous year) and making Disability the third topic to reach over 70,000 posts. Life
Organization & Routines again remained in fourth with 41,211 tagged posts in 2018,
becoming the fourth topic to reach over 40,000 posts.
In 2019, the total number of posts increased by the largest margin yet, from 364,904
to 484,003 posts, a 25% increase in total posts. The top three topics remained the
same as before, but now with a different order, Disability had overtaken Medical
98
System & Medication for second place, making the new rankings: Social Situations,
Disability, and Medical System & Medication. Social Situations remained the most
popular topic and saw a 26% increase in the total number of tagged posts, bringing
the total to 149,538 posts (31% of all posts in r/ADHD in 2019, a 1% increase in
distribution from the previous year) and making Social Situations the only topic with
greater than 140,000 posts total. Disability overtook Medical System & Medication
to take second place for 2019. The gap between Disability and Medical System &
Medication was relatively small each year, never surpassing a 6,000 post gap in any
year before 2019, which is a relatively small gap for r/ADHD posts given the large
number. Disability tagged posts increased by a factor of 27% for a total of 107,092
posts (22% of all posts in r/ADHD in 2019, a 1% increase in distribution from the
previous year and making Disability the second topic to reach over 100,000 total
posts. Medical System & Medication posts increased by the smallest margin yet
of 15%, bringing the total to 96,932 posts (20% of all posts in r/ADHD in 2019, a
2% decrease in distribution from the previous year) and making Medical System &
Medication the third topic to reach 90,000 posts. Life Organization & Routines kept
its fourth place once again at 56,299 total posts, becoming the third topic to reach
over 50,000 posts.
The top three topics in r/ADHD never changed from one year to another, except
in 2019 where Disability and Medical System & Medication switched places, but
both had still consistently been in the top three topics for all years of the subreddit.
When all posts from 2015 to 2019 were totalled, the order of the top topics remained
the same as the first four years of r/ADHD: Social Situations, Medical System &
Medication, and Disability. Social Situations was the largest tagged topic overall for
r/ADHD at 425,936 total posts across all 5 recorded years of the dataset (30% of all
posts in r/ADHD from 2015 to 2019). The difference between the first place topic
and the second place topic was a matter of 109,003 posts. Medical System & Medi-
cation came in second for top overall topics for the period of time of the dataset, with
99
a total of 316,933 posts (22% of all posts in r/ADHD from 2015 to 2019). Disability
came in an extremely close third with 309,765 posts (22% of all posts in r/ADHD
from 2015 to 2019) trailing behind second place by a mere 7,168 posts.
4.2 Discussion
This section is concerned with the discussion of software as a solution to problems experi-
enced by people with disabilities.
4.2.1 Software as a Solution to Problems Posed by Disability
Software is repeatedly mentioned among the top solutions to problems posed by disabil-
ity. For instance, dictation software and screen readers are constantly mentioned as major
solutions to using the internet while having a disability, particularly a visual impairment.
Other software artifacts are mentioned as solutions to help people with ADHD as well.
Spreadsheet programs like Excel and Google Sheets are used as ways to keep organized,
and money-budgeting applications are mentioned to help curb impulse spending.
Other problems are mentioned in this research as well that have much potential for a
software solution. For instance, user with visual impairments mention difficulty in getting
around hospitals and getting to the know the layout of unfamiliar hospitals. A hospital
navigation service with audio descriptions and screen reading integration may help to both
alleviate the issues of getting to know a hospital and would help to build confidence in
blind users getting used to their surroundings. Another issue mentioned repeatedly is the
issue of transportation for people with disabilities, particularly finding reliable transporta-
tion to and from workplaces or other important areas. This could be alleviated with an
application meant for people with disabilities focused on documenting and recommending
accessible public transportation spots, as well as giving users the ability to rate and discuss
the features of the areas, An application like this is useful for presenting people with peer-
reviewed accessible locations and allows them to feel more secure in their choice of public
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transportation.
Many users discuss difficulties finding accommodations for their work or school envi-
ronment or are met with hostility when asking for said accommodations. One way to help
this problem would be to have a service that rates schools and places of employment based
around their accommodations they provide for people with disabilities. This would allow
people with disabilities to have a comprehensive list of a school’s or workplace’s history
with accommodations from the perspective of people with disabilities who have attended
either institution. Such a public rating system would also help to show the major issues
on display in institutions that refuse accommodations or act in ways that may be perceived
as ableist. Such a system is mentioned briefly in a posts on r/disability, and would be a
massive help to people with disabilities.
Applications detailing best practices for performing certain tasks like cooking wile
blind would also be helpful. Many people ask questions on r/disability and r/blind on how
to perform life tasks like cleaning or cooking. An application functioning as a database with
information related to proper ways to cook or clean would provide people with disabilities
with the tips they need to be successful and would help establish a sense of independence
by having them learn through the application.
4.2.2 Software Engineering for People with Disabilities
Users also discuss working in software engineering and programming fields. Many mem-
bers of r/Blind and r/disability, when asked about possible career paths, mention careers in
software as extremely viable career paths for people with disabilities. Many people with
disabilities work in the avenues of software and programming.Current and former engi-
neers relate their work histories, with many saying they joined this career path after they
had been diagnosed with a disability. Users feel that the field is open and generally wel-
coming to people with disabilities. Major strides in accessible technology such as the ones
mentioned above make working within software for users with visual impairments much
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easier. Software jobs have very few physical artifacts that engineers must interact with,
most necessary items can be found on the computer, and things like dictation software or
screen readers make working on computers much more manageable for people with dis-
abilities. Physical accessible devices also work well in office environments, such as special
glasses meant to soften the light from the computer screen and custom-designed office
chairs for people with physical disabilities or motor impairments.
The biggest hurdle in the field of software is the use of keyboards which users with mo-
tor disabilities find difficult to use. Dictation software may be able to help in this case as
well, so that users can type less but still be an active participant within the software realm.
Users who do use this software within the software world report that it generally works
well, with the main issue being how well the machine can sometime read back code and
the tendency of this software to misread messages or code. Accessible software is able to
also be licensed to be used in work environments usually allowing people with disabilities
to subsidize the cost of these technologies or receive them free. Screen readers, dictation
software, and magnifiers are all software that has obtainable licenses to be used in work
environments.
4.2.3 Where Software is Insufficient
Software solutions are a great way to help improve the lifestyles of people with disabili-
ties, as mentioned above. However, software alone is insufficient for a number of reasons.
The first of which is the cost of this software. Specialized software for people with dis-
abilities is repeatedly mentioned as being expensive. Open source solutions do exist, but
it’s clear that sometimes it can take several open source solutions to accomplish what one,
more expensive piece of software is able to do. Furthermore, many open source solutions
are found entirely on repository services like Github, and attempting to use software di-
rectly downloaded from Github can be difficult for the people less familiar with technology
or programming. Entirely technological solutions to disability also risk alienating people
102
with disabilities who may not actively use computers or mobile devices for accessibility
reasons or because of the price of owning these pieces of technology. The other major
issue present with entirely technological solutions is that, despite accessible computing op-
tions existing, the wider internet at large is not accessible in many places. Users mention
repeatedly how websites like Reddit can be difficult to navigate with accessible technolo-
gies. Messaging between users can also be made more difficult by dictation software and
screen readers, as speech recognition software might not fully be able to read back or under-
stand slang words or misspelled words, possibly creating and facilitating communication
difficulties for people with disabilities. Programmers also relate the occasional difficulty
getting screen readers like NVDA to read code back without issue. Software can be an
extremely powerful tool to help people with disabilities but has many drawbacks before
wider adoption of these accessible technologies can take place.
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Chapter 5
Limitations & Future Work
5.1 Limitations
This section discusses several limitations with the study.
• Time Frame of Data - The dataset used in this study represented a sample from all
three subreddits from a time frame of 2015 to 2019. All three subreddits were created
in 2008 and therefore have a much larger post history than what is contained within
the subreddits. Furthermore, the year 2020 was not included which included the onset
of the Covid-19 Pandemic across the world, which had special impact on disabled
communities. This dataset therefore does not feature data from this important time
frame for disability discourse.
• Selection of Subreddits - This dataset featured a selection of 3 disability related
subreddit, but many more subreddits based around the topics of disabiltity exist.
There exist subreddits for invisible disabilities such as r/socialanxiety, r/OCD, or
r/shcizoaffective as well as other subreddits visible disablities such as r/wheelchairs,
r/MultipleSclerosis, or r/Fibromyalgia.
• Categorization of Topics - The labelling, categorization, and refinement of topics
was done manually and ultimately reflects a single perspective on the data gained
from the specific dataset used.
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5.2 Future Work
This section discusses potential future work for this style of experiment
• Utilize more comments and subreddits for feature extraction - By expanding the
corpus of subreddits for feature extraction, more topics of discussion could be found
to further expand the taxonomy of topics. This would reveal more insight in dis-
ability discussion in general and could help to highlight the differences in discussion
between communities and disabilities.
• Feature more comments from earlier years of the subreddits -To better under-
stand how topics change and discussion is affected over time, more comments from
previous years of the subreddit would be useful. This way, historical trends of com-
munity behavior can be established.
• Multi-label Classification of Comments - By utilizing multi-labels, comment la-
bels can be more granular and allow for multi-classification of a comments, which
can be used for further investigation of topic discussions among disability-related
subreddits.
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Chapter 6
Conclusion
This research analyzed major topics of discussion on disability-related forums on Reddit
with the purposes of using this information for the benefit and understanding of all people,
regardless of the existence of disability in their lives. People with disabilities face many
struggles that comes as a result of both their disability and the larger societal systems that
exist which interact with that disability. Despite the existence of struggle, people with
disabilities are clearly very capable and able to adapt to their situations and many people
with disabilities go on to lead rich and fulfilling lives. The existence of struggle in one’s
life does not remove the presence of happiness, competency, and adaptations to new or
difficult situations. People with disabilities in general do have systems of government and
social support, but it’s also clear from many discussions that these systems are lacking,
confusing, and sometimes difficult to be accepted into. Furthermore, users can be taken
off of these systems without warning or explanation which in many ways is unhelpful.
Software solutions for disability also exist, but these can be expensive to obtain, which
narrows the amount of people that these pieces of software are made to help. Even with
this accessible software, many people with disabilities still struggle to use it around the
internet as websites must also be made accessible, which not all websites can be. It’s clear
that, despite the strides made in helping and supporting people with disabilities, there are
still many ways in which this support is inefficient.
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