Happy April, readers! It’s Throwback Thursday, so to set up this post, I want to share with you a memory from one of my favorite times in my life.
It’s May of 2007, and I’m in London. My college got a grant to take one English major and one history major on a ten-day trip to London and Paris, with the theme of A Tale of Two Cities, and I was the lucky English major. On this particular morning, the history major, our mutual professor Dr. M., and I are watching the Changing of the Guard at Buckingham Palace.
Dr. M. has been a lovely chaperone thus far, making sure things are accessible and safe, and that I have what I need so I can enjoy the trip. In doing so, I can tell she’s built up some questions about my disability, but until today she doesn’t ask. Today she says,
“I’ve noticed you’re really determined to do everything everyone else is doing, and you only ask for help when you really need it, or when I kind of push you.” (True; for example, we brought a wheelchair along in case the extensive walking around London and Paris got to be too much). “How do you decide when to ask for help, or bring up your disability as a reason to do something differently, or not do something?”
And I thought, that’s a really good question. Writing this blog now, I still think so, because as we’ve discussed, people with disabilities often struggle with when to ask for help. I know I do, all the time, because I really would rather never do so. At least, not where my disability is concerned. I’m perfectly okay with saying, “Hey, my hands are full. Can you grab the door?” In school I was okay with saying, “Mr./Mrs. So-and-So, I’m not sure I understand what you just said about buildingsroman novels/why is the answer to this math problem 5.58 when I got 3.76?” But bring my disability into it, and I kind of–no, not kind of. I do feel like a doofus. As a high school junior, I once had to ask a teacher to tie my shoes. Can we say “humbling moment?”
It has taken me a long time to be comfortable asking for help in those situations, and I sometimes still fight it. People with disabilities are simultaneously taught that they need to be independent, yet need help with everything. (Yet another instance of double-talk, although it’s not always intentional). Speaking from experience, that dichotomy can cause a lot of discomfort when you legitimately need help or can’t do something. But it also allows you to think carefully about what you can do. When should you challenge yourself? When should you work, move, or participate independently? When is your disability a legitimate reason to do or not do something? When do you, or don’t you, “play that card?”
As with a lot of things, the answer is different for everybody. If you have severe disabilities, those will probably influence a lot of what you can do, and that’s fine. Yet every situation is different. If your severe disability impacts your ability to speak, it’s absolutely fine to say, “I need X agency to spend money on a speaking device.” But if your severe disability does not impact how you feed yourself, it’s not okay to take someone else’s time and ask to be fed, just because you want the service.
With milder disabilities like mine, it’s a bit trickier. If your disability is mild or invisible, you may have been taught it’s never okay to “play the card.” That’s wrong, because there are situations in which it is okay. I told Dr. M. that my personal rule is 80-20. As in, 80% of the time, I do my best to act independently, to do the things TAB people are doing, and to blend in. And usually, that works. But the other 20%, I do have to say, “I have CP and it’s going to affect this situation.” Example: Later on in our trip, we toured a historic European castle. The problem was, the castle was highly physically dangerous–stairs with no railings, slick surfaces, dark passages, etc. By that time, I had also pulled a knee muscle walking. So on the advice of Dr. M and my classmates, and for my own safety, I said, “That’s fine. You guys go; I’ll grab a bench and chill.” Did I miss touring the castle? Sure, a little bit, but I wanted to be safe. And sometimes that’s the way it is with disabilities. You choose the option that’s safest or best for you in the moment. The people around you should understand that, and if they don’t, that’s their issue, not yours.
The rule is not always 80-20. Sometimes it’s 50-50. For instance, if I go to a picnic or festival, I might be able to participate in half the games or races. And sometimes there’s not a ratio at all. But, are there instances where it is always okay to use the disability card? Yes. Some are, but are not limited to:
1. Life-threatening emergencies. For instance, if you are a PWD caught in a natural disaster, it is okay to ask for medical and other services to see to your needs first. That’s not abusing services; that’s saving your own life.
2. Non-life-threatening, but unsafe situations. See the castle example. And, I learned the hard way, if the bus has priority seating for PWDs, take it. Do not try to stand just because the bus is already crowded and you feel awkward asking somebody to give up their seat. You’ll end up in the aisle the minute the bus moves.
3. Situations in which you could do what is being asked, but are legitimately unsure you could do so successfully. For instance, when my brother and SIL were dating, they came over to play cornhole. I’d never played and gave it a shot, but found out I wasn’t good at it. So I chose to sit out because I’d rather do that than play unsuccessfully. Another example: Let’s say you have a learning disability, and your friends want to play a word or numbers game. That’s your choice–you can participate with them, or you can nicely say, “How about we do something else?” As long as you are not insisting on having your own way, or accusing people of leaving you out when that’s not their intention, you’re fine.
4. Situations in which the other person doesn’t know about your disability. This happened all the time, especially in college. Remember, there are no IEPs at the university level. Therefore, my professors didn’t always know I couldn’t write, unless they had me before. (Even then, I had some profs say, “I’m sorry; I totally forgot.”) In those cases I had to basically say, “CP, remember? But that’s okay; I’ll get someone to take dictation.”
5. Situations of blatant discrimination. Self-explanatory. Never be afraid to blow the whistle on a person or people treating you badly for a disability.
Situations in which “playing the disability card” is not okay:
1. You’re literally playing a card. As in, bringing up your disability exclusively for sympathy or to manipulate a person or situation. Not cool.
2. Situations in which you legit need services, but are abusing them. This is the kid in a wheelchair who can participate in P.E. with modifications, but flat out refuses, or accuses the teacher/coach of “making” him do what he can’t/being unreasonable. It’s the blind employee who freaks out when a colleague, with no malicious intent, says “See you later.” It’s the college student who needs extra breaks during tests, but uses them to “go to the bathroom” and stuff cheat sheets down his pants. (This last one is true. My first college job was as an assistant to the school’s Disabilities Office director. One of her colleagues at another university had that happen to him).
3. Your disability should not/does not affect the skills you need to complete a task. For instance, I have auditioned for plays before and requested a chair, since nerves sometimes affect my balance. That’s fine. What would not be fine is claiming that, because of my specific case of CP, I need a script in large print. I don’t, and if I asked for one, it might take that resource from someone who did.
4. You overplay the card. This is what would happen if, say, I went jogging with friends and not only asked them to stay off rocky trails (legit) but constantly asked them to slow down/asked them to hold my arm the whole way/asked for a break every 10 seconds (not legit).
It can be hard to determine when you really need help and when you’re fine, when your disability should and should not affect certain situations. Sometimes your disability will influence situations unexpectedly–another legitimate reason to bring it up. But remember that as long as you are congenial, and as long as you are addressing actual needs, your disability is always legitimate. No one has the right to deny you help you truly need, or to tell you you’re making stuff up when you’re not. That disability card could be the ace up your sleeve. Be careful when you use it, but never be ashamed of the fact you have it.