Mentioning Disability is not an Invitation for Commentary or an Inquisition

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.

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4 responses to “Mentioning Disability is not an Invitation for Commentary or an Inquisition

  1. I am in total agreement with what you have just posted. I suffer from an invisible disability-Fibromyalgia. Many of my former co workers couldn’t understand why just going to work -showing up was a win for me. Making it through an 8 hour day sometimes felt like 20 hours to me. Severe fatigue and extreme pain at the end of the day was hidden behind a fake smile, tears shed in private.

    I no longer work, as it became too much for me to handle. Functioning ceased to exist in the way I used to be able to live. Many life changes have occurred and continue to change day by day.

    I think the thing that upsets me the most when people speak of disabled persons is they fail to look at the person. A person should never be defined by the disability they have, but by the heart they have.

    I have no idea what you go through on a daily basis, my prayer is that God will continue to work through you to teach others and you will find hope in knowing that there are many people that feel the same as you. Blessings and thank you so much for sharing your point of view!

    Liked by 1 person

  2. “People are sorry that I am disabled not that I experienced discrimination or prejudice.”

    Yes! This is exactly why this post is important. I must admit, I find joy whenever someone asks why I use a wheelchair and I get to respond, “Because I can’t walk.” Shuts them up every time.

    Liked by 2 people

    • Yes, THIS! I *hate* when I make very pointed political commentary about the lack of accessibility only to find that people STILL completely miss the whole point of my message and think that my deafness is the sole factor in why I can’t do certain things. Funny, I am pretty sure my deafness is not magically cured when I DO in fact manage to, for example, go see a movie and understand every line in the movie. And I do not suddenly become deaf again if I don’t understand all of it, and then magically cured again when I understand the next movie perfectly again. I’m pretty sure that has much more to do with the fact that the movies I did understand had properly functioning captions and the movie I didn’t understand didn’t have working captions.

      In relation to some of the other points in the OP — yes, it annoys me when people seem to think they need to know the details of my audiogram. I don’t necessarily mind their knowing per se, but I do mind when they seem to be laboring under the misapprehension that knowing my audiogram will help them understand what kind of accommodations I need. No, it will not. An audiogram will not tell them that Mohammed can lip read west coast accents because he grew up there but cannot lipread east coast accents as easily. It will not tell them (unless they have a LOT of experience reading audiograms in conjunction with speech discrimination scores) that my speech comprehension is lower than it should be for my audiogram because in addition to being deaf I also have auditory processing disorder. It will not tell them that Lucy’s most natural language is ASL so she really must have an ASL interpreter not CART (communication access real time transcription), but LaShawn only understands a little ASL and really much prefers either CART or possibly a cued speech transliterator. No, an audiogram is not nearly as helpful as they think. What they need to ask is not, “Let me see your audiogram,” but, “How can we best meet your needs for communication access?” (or adapt as needed for other types of disabilities)

      Like

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