'AITA for not sharing my diagnosis when advocating for people with disabilities?'
"AITA for not sharing my diagnosis when advocating for people with disabilities?"
Tiny bit of background: I am physically disabled. I walk with a slight limp, use crutches and braces many days, have some substantial scars (although often covered by my clothes), etc. Most days a stranger could see that I am different, but may not really know what is so different about me.
A couple semesters ago I was taking a required class in college and discovered it was basically Woodshop class… which is not easy when I am using crutches and such. I got to know the professor pretty well and he was amazingly accommodating and ended up making a lot of changes to the shop to accommodate me.
He reached out to me a while ago and explained that he was teaching a class that focused on designing for clients and wondered if I was willing to come in and speak about my experiences being disabled and then serve as the client.
I am a huge fan of advocating through sharing stories so I agreed pretty quickly. I went in, and spoke about my day-to-day experiences. The tiny bits of inaccessibility on campus that add up for me, the way I’m treated by others, etc.
I was focusing on how my disability affects my life rather than what my disabilities are, so, notably, I didn’t give my diagnoses. Then I met with each group of students and talked about what they could design to help me. The point was for them to notice a challenge and offer a solution.
I was meeting with one group and one of the students asked me what my diagnosis was. I said, “well I have a few, but I prefer not to share them as that is personal medical information.”
The student kind of rolled his eyes and said something along the lines of “well how am I supposed to design something for you if I don’t know what’s wrong with you.” This, obviously took me back, and frankly stung a little bit.
Is it wrong for me to share about my experiences without sharing my diagnoses? I can see how my words can mean less if people don’t know the name of “what’s wrong with me” but it felt like this was supposed to be more about my experiences than the disabilities themselves. I’m feeling torn.
p.s, if it matters. I generally don’t share diagnoses because I have had a couple bad experiences with people googling the diagnosis and thinking they have a full understanding of me and my life then start making assumptions about me.
Here is what readers had to say in response to the OP’s post:
NTA Engineer here, and all I need to know is what your challenges are in order to be able to help in that sort of class. Yeah I want to make sure I don't offer a solution that doesn't work because of something you didn't mention, but that's part of the iterative design process.
Ideally your prof would have covered basic ethics regarding working with folks with disabilities, but they might not have thought of it either. If the student had backed off on your "I'm not going to share" id give an N A H, but they didn't.
Knowing the specific diagnosis isn’t really necessary for designing solutions. Understanding the limitations and real-world challenges is what matters, and it keeps the focus on accessibility rather than assumptions based on a label.
This is the social model of disability. People are not disabled because of their medical condition, but because of the inaccessibility of the world around them.
NTA. No one needs the actual diagnosis to accommodate you or design things to help. All they need is the physical/mental limitations that they need to design for. That student’s response is very typical of people of who don’t understand the nature of living with disabilities and absolutely should be called out so all the students can learn to do better.
NTA, and the question was inappropriate, though possibly understandable due to ignorance. Their eye rolling and response however, was absolutely rude and uncalled for.
NTA. I would report that student's comment to your professor and explain to him how such comment makes you uncomfortable. That student was way out of line, and to prevent future incidents like this, then your professor must insist on his students to focus on how to accommodate your disability. They're not doctors and none of them should never, ever ask you those kinds of questions.
NTA. He doesn't need to know your diagnosis; he needs to know how your disability affects you adversely, and the problems you encounter as a result. Those two things are not the same (not least because if you take any two people with the exact same diagnoses, you can pretty much guarantee that they won't have identical symptoms).
If you haven't already, tell the professor - he needs the feedback that one of his students was rude to the guest speaker, and also missed the whole damn point of the lesson.
NTA. You're absolutely correct about everything you said, and the student was very impolite in how he asked and reacted.
NTA. Designers don't need to know what specific diagnoses are. All that matters is that some people have mobility, dexterity, audiovisual, mental impairments etc. I don't need to know why a particular person can't use a spiral staircase, but it's painfully obvious that not everyone can.
It's also rude as hell to phrase a disability as something that's "wrong" with you. That student is in the wrong field if he doesn't know that.
NTA. The most charitable interpretation is that the student didn't mean "diagnosis" as much as "constraints" (so, they weren't asking whether you had MS, fractured tibia, or whatever, but "stairs are difficult for me, I can't bend over easily"...and so on). They don't need a diagnosis to design an accessible space, but it is helpful to know what sorts of constraints to consider.
Of course, if they were learning about universal design they wouldn't need to know anything about your accommodations, constraints, or favorite colors, but it sounds as though this is supposed to be more client-specific. I will say, though, that chances are the student meant diagnosis--I don't know why people always want to know, and don't realize how intrusive that is.
NTA, I'm also disabled. He was an AH for the "what's wrong with you" comment and acting like it's impossible for him to design for you when you have given him all the information he needs to do so. He's also an AH who apparently doesn't know that a diagnosis can tell you nothing about someone's specific accessibility needs.
I'm sorry. People who make comments like this don't treat us as human. If you feel comfortable with it I would bring it up with your professor; it shows a real lack of curiosity or engagement on the part of that student and ideally the professor would have intervened there.