Hundreds of stories
Visualising interviews of people with diverse diagnoses to commemorate the beginning of the Paralympic Games
Have you heard of Special Books for Special Kids?
The YouTube channel (nicknamed “SBSK”) started out in 2016 as a book publishing endeavour by Pennsylvania special education teacher Chris Ulmer, who wanted to share the stories of the middle school students in his classroom with the world. After rejections by too many publishers to count, he decided to turn the project into a video series, pointing the camera at those same students and asking them what it was like to live with a disability. Five years later, he has interviewed individuals (children and adults alike) from around the world and gained an enormous following on social media.
I watched my first SBSK video in high school when I began to develop an interest in accessibility and inclusion. I was struck by Chris’ excitement in the presence of his interviewees, no matter the extent to which they could answer his questions vocally. I couldn’t imagine how any human being could be so joyous while being filmed, thinking for some time that this was not all genuine. Nevertheless, I found each video engaging and fresh with insights about the value of diversity and acceptance. I’ve been following the channel’s growth ever since.
With the Tokyo Paralympic Games beginning soon and its corresponding #WeThe15 campaign launching this week, I was eager to produce some content to show how far we’ve come and how much work we still need to put in to ensure a fairer and more accessible world.
There are other motivations behind this interest, too — my work with the Equality Trust this week has shone new light on the significant employment and income gaps that have existed for decades for disabled people in the UK, especially those with intellectual impairments. And an ongoing project to develop a predictive text teleprompter app for people with aphasia and related word-finding difficulties with my good friend Divya has rekindled my curiosity about the varied ways in which we all communicate. Without further rambling, here’s my thought process behind this week’s visualisation, which you can access here (I decided not to embed the graphic in this post because it couldn’t be resized).
Collecting the data
As is often the case, the data collection process for this graphic was much lengthier than the visualisation process. This week, I may have spent twenty times longer filling out my Google Sheets document than designing my final product!
I began my journey by opening all 350-odd of SBSK’s interviews on YouTube. I manually noted the upload date of each video, the name and age of each individual interviewed, their diagnoses (if specified), and the video link. Then, I did separate research using resources such as the National Organisation for Rare Disorders’ website and scientific journals such as the Lancet to find out the prevalence or incidence of each interviewee’s condition. I may be studying to become an epidemiologist, but these figures confused me to no end — I wasn’t sure which was the most accurate measure of the rarity of each diagnosis in a specified population. Therefore, please forgive me if you notice any inaccuracies in my data.
After this first run-through of SBSK interviews, I opened each link for a second time and listened to each conversation in detail, selecting an excerpt from each that I felt was interesting. This ranged from the hilarious to the devastating. In selecting these interview snippets, I wanted to encompass as fully as possible these individuals’ realities — each person and their loved ones spoke to Chris about the ups and downs of their lives with a diagnosis, and I would be doing them a disservice by only including one of these perspectives. However, because of the compressed nature of this data, I had to make a decision about which to include more often than not. That’s why it’s so important for you to watch the full interviews after exploring them with this visualisation.
Because the SBSK channel is uploading new interviews every week, and because of the amount of data collection required, this visualisation is not yet complete (the excerpts are 60% filled in at the time of this writing). However, I intend to finish compiling data for existing videos by the end of August.
My thoughts on representing this data
In visualising the thoughts and opinions of a community of which I (and indeed, Chris) am not a member, I repeatedly questioned whether I was right for the task and how my ingrained perceptions influenced my approach. I examined this through two pillars of academia, which some may say intersect: quantitative and qualitative research.
As a quantitative researcher …
- I questioned whether these interviews were a representative sample of all people with the specified diagnoses, concluding that this was far from the case. Firstly, not everyone would be comfortable with a camera or with the personal questions Chris often asks (examples include “what is your biggest fear?” and “how has this affected your dating life?”). Also, individuals in geographically remote locations or those without stable housing would find it difficult to host camera equipment.
- Then, there is the question of self-selection — individuals who would like to be interviewed nowadays have to fill out a form on SBSK’s website, and Chris has said himself in a Reddit Ask-Me-Anything thread that those who choose to speak with him tend towards a more positive outlook. Is it fair for me to showcase these perspectives exclusively if some may believe that these words speak for an entire community?
- Finally, I identified the classic issue of measurement error. I could have recorded anything wrong given the absurd times at which I’ve worked on this project.
As a qualitative researcher …
- I wondered how my biases impacted the way I transcribed (for spoken language) and described (for nonverbal communication) parts of these interviews. I remember my qualitative methods module last year distinctly covering the issue of whether to include interview participants’ hand gestures or tone along with the actual words they said, and how this decision could impact interpretations of their speech. Misinterpretations appear even more likely with nonverbal forms of communication such as body movements or sounds. I fear I’m not qualified to know whether what I am doing is right. On the other hand, one choice I’m proud of in this regard is my insistence on including the responses of people with diagnoses rather than of their family members, caregivers, or friends whenever possible. I feel that part of SBSK’s mission is to increase acceptance of alternative forms of communication.
- Returning to the question of selecting excerpts, I was reminded that my experience of narratives surrounding disability impact how I present each interview. For example, I wanted to include as often as possible examples that would “normalise” interviewees in our current societal context (i.e. kids fascinated with the word “butt” and “yo mama” jokes, teenagers embarrassed by their mothers, and young people discussing love and marriage and partying) to combat stereotypes of how disabled people interact with their communities. However, I realise that it isn’t my job to do this, but rather to present the most real narratives. Maybe what I’ve shown is real, but maybe it’s not.
Why this effort?
Through the process of completing this project and writing this reflection, I realised that the graphic I produced wasn’t so much an exercise in data visualisation as a test of my ability to criticise my own allyship. I feel lucky to have access to these individuals’ stories, incomplete as they may be, and hope you’ll appreciate them too and realise the importance of advocating for accessibility. I’m hugely grateful to Chris and Alyssa (SBSK’s Executive Director and his partner) for their hard work on this project, as well as to all the individuals who shared their stories courtesy of SBSK.
Thank you for reading! Now it’s time for me to get my second COVID vaccine dose (that’s another way to make a fairer world for people with various diagnoses). 💪😷👋
P.S. I am fangirling all over the place about the Paralympics this year. It’s the first Games cycle when I’ll have regular access to social media and the ability to watch events live, and even if you’ve never watched para-sport before, I’d recommend you start next week. Badminton will be contested for the first time in Tokyo, and swimming and track events that have been around for decades will be exciting once again (unlike Olympic competition, where a 100m race only encompasses two events divided by gender, Paralympic disciplines are split by several impairment classes, meaning several times the action and more time to feel disappointed about your own lack of fitness). 🏅