Thoughts on noticing disability experiences

A reader asked:
As an able bodied person, I am never certain when/if it’s appropriate to bring it up. I don’t want to belittle disabled persons, but I also don’t want to be protected from their reality. How do you bring this up respectfully?
realsocialskills said:
The short version is – bring it up when it matters, respond respectfully when they bring it up, and don’t be creepy about it.
Some details:
On responding respectfully:
  • If someone mentions disability, acknowledge what they say, in the same way you acknowledge other things people say. Do not ignore them or wait for them to change the subject.
  • (I’m mentioning this because, very often, when I mention being disabled, people completely ignore me until I change the subject. It hurts. Don’t do that).
  • I think sometimes people ignore us when we mention disability because they’re anxious about saying the wrong thing.
  • It helps to keep in mind that someone mentioning disability probably isn’t actually asking you to understand everything and fix their lives by saying something brilliant. They’re probably just talking about their life, just like everyone else does
  • Even if you don’t know what to say, say *something*, or respond *somehow*
  • Eg, if someone mentions that they’re in pain that day, saying “That sucks” is a lot better than ignoring it.
  • Just, generally speaking, don’t treat disability as a scary taboo subject. Treat it as a normal thing to talk about.

A thought on language:

  • Generally speaking, the best language to use is the language someone uses for themself
  • Eg: If someone calls themself Deaf, don’t call them hearing-impaired
  • People have widely differing preferences on person-first language. Some people prefer to be called people with disabilities. Some people prefer to be called disabled. Some people don’t care much one way or the other. It’s best, if you can, to mirror the language someone uses for themself.
  • It’s also worth being aware that almost everyone hates being called “differently abled” and that most adults do not like to be called people with special needs.
  • That said, the most important thing is to speak to someone respectfully and to acknowledge them. Getting the language wrong is less bad than refusing to acknowledge or mention disability

Help people in a matter-of-fact way when they ask for help:

  • People with disabilities often need help at various times
  • Getting help can be really complicated
  • A lot of people like to feel like they are ~helping~, and that it’s an emotionally laden act of charity.
  • But actual help is just – doing stuff people ask you to help them with. It shouldn’t be a big deal..
    • Eg: Jane and Sue are in a meeting with other people in their office.
    • Someone in the meeting passes out an agenda
    • Jane’s hands aren’t working well that day, so she asks Sue to pick up her copy for her
    • Sue should do so without comment (unless she needs to ask a question in order to clarify what Jane wants her to do)
    • This would not be a good time for Sue to ask Jane questions about her hands
  • Another example:
    • Sam and James are coworkers. Sam is blind and James is sighted.
    • James and Sam work closely together and often go to offsite trainings or meetings
    • In a meeting in an unfamiliar place, Sam asks James to show him where the food is and tell him what is available.
    • James does so, and it’s not a big deal, because people who work together help each other with stuff.

More thoughts on help:

  • If you have reasons for not wanting to do a particular thing, that’s ok
  • (Eg: if someone asks you to move a heavy box out of the way of the ramp, it’s ok to say “Actually that’s too heavy for me too – how about if I find someone else to move it?”)
  • If you think that something other than what the person is asking for might work better, it’s ok to suggest it, but not ok to override them
  • (Eg: “There’s an elevator across the street. Would that work?”, NOT “Just take the elevator!”, or “I think they may have accidentally sent us salad with croutons. Is that dangerous to you, or will you be able to pick them out?” NOT “Can’t you just pick out the croutons?”)
  • If someone tells you that they do not want help, back off. (Eg: If someone with a mobility impairment tells you not to hold the door, don’t hold it. They have a reason.)
Sometimes it’s important to bring up disability. When you see a potential access issue, say something to the person it affects, and ask them what to do:
  • Like “We all want to get together for dinner. Jane’s Loud Bar and Grill has awesome steaks, but it’s really loud. Does that work for you, or should we pick a different place?” or:
  • “We’re chartering a bus for the company picnic. What should we know about your access needs? Should we get a bus with a lift? Or is there another way that would work better?” or:
  • “There’s going to be a booklet for the conference. Do you need it in an electronic format ahead of time?” or:
  • “We’d like to show a movie to the class. What do I need to know about avoiding your seizure triggers?”
  • Don’t worry about making someone feel different. We know we’re disabled, and we know we are different.
  • What we can’t count on is having our access needs met so that we can actually do what we need to do.
  • Being willing to talk about access *and follow up on it* makes a big difference
  • Having to initiate access conversations all the time is exhausting (particularly since people tend to react very poorly to being asked to accommodate our needs)

Similarly, if you notice discrimination, let them know that you see it too, and, if appropriate, respond to it:

  • Eg: If you see someone treat a disabled friend or coworker in a degrading ableist way, it’s ok to say to them “Wow. That was horrible how he treated you. I’m sorry that happened.”
  • It can be really, really helpful to know that other people are seeing it too
  • It’s much less helpful if you’re looking for brownie points for noticing though; that can become another microaggression

Sometimes questions are ok, but some questions are really creepy:

  • We don’t like being everyone’s education objects or self-narrating zoo exhibits
  • But a lot of us are happy to answer certain kinds of questions
  • Eg: I’m generally happy to talk about my vision, my movement issues, cognitive stuff, and stimming, so long as the questions are asked respectfully and it’s clear that the person will back off if I don’t want to answer.
  • Do not ask questions that are aimed at investigating/debunking or the like. For instance “Why are you using a wheelchair? I saw you walk! Do you really need it?” is an obnoxious question. So is “Why can’t you look at me when I talk to you? My brother’s son got therapy and now he makes eye contact all the time.” or “Seriously? You’re allergic to *that*? No one had allergies like that when I was a kid. Why all these allergies all of a sudden?” or asking someone to answer a bunch of questions with their communication device in an attempt to trip them up.
  • Do not ask creepy questions. For instance: asking someone how they have sex, asking someone how they go to the bathroom, asking someone detailed questions about their body (particularly if you’re asking about body parts covered by clothing)
  • Back off if they don’t want to answer the question
  • They do not owe you an explanation of anything disability-related, or of why they’d rather not talk about things
  • Do not ask questions in order to assuge your own fears (eg: don’t ask someone how they became disabled if what you’re really asking is “please reassure me that this can’t happen to me”.)
  • Do not ask someone to justify choices they make about mobility, treatment, therapy, diet, health, how they move or anything else disability-related.
  • Do not ask someone to justify their desire to have children. Particularly, if you know someone is trying to get pregnant, do NOT ask them whether what they have is genetic.
  • (Yes, I know about gluten-free diets. No, I will not be trying one. No, I will not be explaining why.)

It’s ok to notice equipment.

  • People who use mobility equipment know that they use mobility equipment
  • Really
  • This is not news to them
  • Admitting that you also notice will not be a sudden revelation to them that they are different
  • It’s not nice to ask nosy questions. But if someone, say, puts a bumper sticker on their battery box, it’s ok to notice and comment on said bumper sticker
  • If someone gets an awesome new cane, it’s ok to say you like the flower print on it
  • Just, generally speaking, you do not have to pretend mobility equipment is invisible

Also, acknowledge that being unaware of disability issues is a problem, and work on solving it. Don’t make your awareness the responsibility of your disabled friends or coworkers; this is your job, not theirs. If they choose to help you understand, they’re doing you a favor; appreciate it and don’t lean on them too heavily. Read things. Ask people who have chosen to make themselves available for education. Realize that being unaware of disability issues is a major gap in your understanding of the world, and seek to address it.