I think one of the clearest examples that I experience regularly that disability is not an accepted experience is that I can’t casually reference the experience of being disabled without being met with either pity or inappropriate questions. Sometimes it is both.
For me disability is a huge part of how I experience the world. It impacts how I do every day things. If it is relevant I should be able to reference it in the same way a nondisabled person talks about their day.
When I reference my disability or how it impacted an activity (like referencing how I had to do something differently than the norm). I am not looking for pity. But I all too often get it.
Or in a situation where I am airing a grievance based on discrimination, where empathy (though I usually get pity) is appropriate, it is misplaced. People are sorry that I am disabled not that I experienced discrimination or prejudice.
I have written about how nondisabled people often treat disabled people like public spectacles before. Here, I’m going to address how casual acquaintances try to legitimize inappropriate questions about disability.
This isn’t about those people who accost disabled people on the street to ask “what’s wrong with you?”
Rather this is about those people who you are conversing with casually who take the remotest reference to disability to ask “what’s wrong with you?” even when that question is not a natural progression of the disability reference.
These encounters often involve social coercion on the part of the questioner to get you to answer.
The scenario might involve a peer at work or a fellow guest at a party. They are people who can have genuine reasons to speak to you. They will also use the circumstance of being at work or surrounded by other people to force compliance because failure to comply could have consequences.
For example, you are attending a bridal shower for a close friend but it is being hosted by that friend’s future in-laws so the only person you really know is the bride. Everyone else is either a future in-law or one of their close family friends. As often occurs in these situations people ask what you do.
For me this brings disability up basically immediately because I’m a Disability Studies student. It’s a miracle is people don’t immediately move a conversation about what I study to what I am. Usually, telling someone you are a student elicits questions about the program and what you are planning on doing after graduation.
Not so if you are both disabled and a student of disabilities. Somehow, people see to think that asking about my medical history is a perfectly natural progression from me saying that I study disability. It is always quite clear in these conversations that people aren’t just ascertaining whether I have a personal stake in my field. That could be more respectfully determined by asking why I chose disability studies.
A question like that also would allow me to determine what information I am comfortable sharing. Demanding someone’s medical information is about entitlement and voyeurism. Waiting for a disabled person to make even the vaguest reference to disability first does not make it more acceptable.
Making that demand in front of other people is just coercive. Particularly if refusing will put you in a awkward position. Either with the questioner or in keeping with the bridal shower scenario with the bride.
I have found that simply telling people that you don’t want to share that information is rarely received gracefully when the request originated as a demand.
People tend to realize that a refusal is also a message that the question was inappropriate so they feel the need to justify their right to ask it and shame you for noncompliance (remember this is not a private conversation but one that is happening in earshot of other people). So they ask follow-up questions.
You’re doing a PhD in disability studies, shouldn’t you want to educate people about disability?
The answer I wish I could give: Yes, and an integral part of teaching about and advocating for disabled people is making clear boundaries. It does not benefit disabled people to reinforce the idea that our lives and bodies are available for public consumption.
Additionally, as you point out I am doing a PhD in disability studies which means that in addition to my years of experience as a disabled person, I have spent years and tens of thousands of dollars becoming this qualified. University professors don’t work for free so why should I? If you would like to agree to an hourly rate, I’d be happy to share my extensive knowledge with you. Like any work arrangement though I have the right to have my medical privacy respected and I will not be sharing any personal information unless I choose to do so.
I am just trying to learn, why won’t you educate me? Don’t you want people to understand?
The answer I wish I could give: Setting boundaries is a lesson in respect. If you really wanted to learn, you would accept that lesson rather than expecting me to give you personal information which in the grand scheme of things would tell you nothing about the experience of being disabled. It really only serves to parrot information that can be found in a medical textbook or on WebMD.
Ultimately as much as I want to, I don’t say those things. More often than not I just give them the information that they want. This invariably leaves me feeling horrible. The consequences for noncompliance however are greater. In the bridal shower scenario it would put my friend in the awkward position of either defending me or defending a future family member or friend. Either alienating me from them or them from family.
These more public confrontations risk more than angering a single person but can have wider consequences from witnesses who are often just as curious as the original questioner. It is usually easier and often safer to comply in the short term and if the questioner is someone that you are likely to have repeated contact with (like a coworker) consider taking action to change the environment in the long term.
I wish these interactions didn’t happen at all. I wish people’s express desire to learn was genuine and not a convenient excuse to justify inappropriate behaviour. So in case you do genuinely want to learn about disability and don’t want to be an asshole in the process here are a few tips.
If you are able, make an effort to educate yourself on your own time. Read blogs by disabled people. Read academic disability literature (some disability studies journals like Disability Studies Quarterly are public access and can be read for free by anyone).
If you are talking to a disabled person, don’t take any vague reference to disability as an invitation to ask probing personal questions. Make sure any follow up questions are directly related to the person’s original reference.
Let the disabled person decide how much they are willing to share and respect their privacy and boundaries.
Recognize that diagnosis information often says very little about the actual lived experience of disability and should not be considered essential to learning about it.