disability problem

like

literally someone replied to huffpostqueer and said something along the lines of “im straight and have kinks that could cost me my job and lose my kids” like first off, maybe you shouldn’t be doing those things nancy but secondly THAT!! DOES!!! NOT!!! MAKE!!! YOUR!!! OPPRESSED!!! like i am literally fuming and huffpostqueer said something along the lines of “preach it!!!” and i jiust wanna die i hate huffington post so much like why thanks for further silencing us on our actual issues like on actual LGBT people and it’s intersections with race and disability and ACTUAL PROBLEMS THE COMMUNITY FACES

THAT THING WHEN KIDS POINT AT YOU YELLING QUESTIONS WHEN YOU ARE VISIBLY DISABLED

It kinda sucks. It really sucks. I like kids and I work with kids and I’m totally used to it and it still sucks. It hurts my feelings.

I didn’t become disabled and get an instant magical free training in how to teach kids about disability and diversity. I also didn’t sign up for a delicate unpaid education-and-outreach job every time I go to the frickin’ grocery store. (I actually don’t have time for that).

BUT. And this is a big butt.

I am actually learning to love it, this stupid important unpaid job that I didn’t even get to choose.

I know I know, I have an unfair advantage because I already thought kids were ridiculous and hilarious to begin with. And I worked with them before I started using a wheelchair. But working with kids and having to have the disability conversation in so many iterations so many times over is teaching me a whole lot about this whole situation! And it got much less stressful after I realized this helpful key secret:

kids don’t actually have a problem with disability.

Especially compared to the adults you encounter who will or won’t ask about it and will or won’t hire you or date you or what-have-you, so many kids have absolutely no problem with disability. Unless the media // the adults around them have gotten to their brains before you, this whole conversation might be alarmingly simple, quick, and painless:

SCENARIO 1:

“hey why are you on that?” [“on that” refers to my wheelchair]. 

(whenever possible I put down what I’m doing in order to smile and make eye contact for this. It will probably be less than 20 seconds).

“oh my wheelchair? Great question! I have a disability that makes my bones crack easily, so it’s safer and faster for me to use a wheelchair sometimes. It’s just how I help my body be at its best!”

“oh!”

“cool right?”

“yeah!”

“did you have any other questions?” [I only throw that in on good days]

“um. nope!”


[kid goes to play]

[exhale]


My advice is to expect Scenario One. All you gotta do to prepare is have a one-sentence explanation of your assistive device / disability that you feel comfortable with. Kids do not give a shit about your diagnosis, and you don’t need to prove anything to them. All they need from you is a simple, casual answer.

I * always * explicitly use the word disability for a few reasons. I used to just casually say “I fractured my leg” which was also true, but kids learn really early on to feel pity for someone who has an injury, so they would say things like “ohh I feel bad for you” or “oh when will you get better” which always made the conversation longer and more uncomfortable. Then I realized I had a lot of power in shaping their interaction with disability (and their response to it) in these brief encounters, and also I GET TO DECIDE HOW I ANSWER! So I revised my answer to frame my injuries (and my wheels), as a normal, casual part of my life. Feel free to use my exact wording if it helps you:

“oh my wheelchair? Great question! I have a disability that   (very basic explanation)     so it’s safer and faster for me to use a wheelchair sometimes. It’s just how I help my body be at its best!”

Okay I studied sociolinguistics in college so here’s my geeky little break-down:

  • oh my wheelchair?” ← gives a nice nonchalant “oh this old thing” vibe and sends the message that it’s okay and normal to talk about wheelchairs.
  • great question!” ← teaches the child that disability is not shameful
  • I have a disability that ___” ← addresses the taboo right away, deflating any tension, awkwardness, and curiosity in the rest of the conversation. Suddenly you have all the power here, since there’s no secret anymore.
  • so it’s safer and faster for me to use a wheelchair” ← emphasizes the positive attributes of assistive devices. You could also say “it helps me do everything I want to do” or “my wheels are faster than my feet” or whatever you want. Again, simplicity works for you in this.
  • It’s just how I help my body be at its best!” ← hopefully kids are already getting some messaging about taking care of their bodies: brushing their teeth, eating a snack, sleeping enough, etc. This line should be relatable to them and also caps the conversation in a helpful way: it’s almost like saying “this is just how it is” and creates a sense of gentle, positive closure.

My personal opinion on the matter of disclosure is that the vast majority of kids don’t care at all about the fancy name of your disability. I don’t emphasize simplicity because I think kids need to be talked down to, I emphasize simplicity because it keeps the conversation clear, casual, and quick. In the adult world, disclosure is practically demanded of disabled people: even if they don’t ask, everyone wants to know what, exactly, is “wrong” with you. So my choice in not naming my specific disability in these conversations with kids is conscious and political. Not disclosing my diagnosis keeps our conversation out of the medical sphere (disabled people are so over-medicalized anyway) and gives us a chance to connect human-to-human. Some people feel that sharing a diagnosis will raise “awareness” for their illness or disability but I’m not sure that awareness is what I need from kids. I don’t need them to be aware that my bod has wonky collagen production, I need them to know how to interact with me respectfully. I’m not adamantly against specific diagnosis disclosure, (again, YOU GET TO CHOOSE what you say in these situations!) but I also don’t think it’s necessary or important and I think more often than not, it derails the conversation. Especially if you already didn’t have time for this to begin with. Guaranteed, a diagnosis disclosure will add time to this convo.

Often kids will ask what happened to you, assuming that you’ve had some kind of accident. I have a congenital disability, so even when I * have * fractured and had an ‘accident’ and that is why I’m wheeling instead of walking, I usually just casually say: “oh, nothing happened! Same old me. I have a disability…” and continue my spiel from there. 

They will also ask what’s wrong with you (which is the hardest to stomach) and I do the same thing: “oh, nothing’s wrong! I just have a disability…” etc. If I’m just absolutely not in the mood or if a kid seems weirdly aggressive (which is almost never the case, but it does happen), I’ll cheerfully say “oh nothing’s wrong, but thank you so much for asking!” and that usually shuts down the conversation. 

Lovelies, I know how fucking painful this is. Ugh it sucks so much. But it does get easier and gentler and sometimes kids say really goofy things that you get to laugh about later. This conversation is yours. You get to do as you please with it. Have fun. If you want, for little ones throw in an afterthought: “plus it gives me magical powers. But don’t tell anyone.” Having someone look at you like you could be legitimately fucking magical might make your day. 

Hell, you ARE legitimately fucking magical. Go you for reading this and thinking about this and doing you. 

love,

haley

Just a PSA that calling disabled people “differently abled” pisses a majority of us off. We’re disabled. Sugar coating it treats us like who we are is something bad. There are things we CAN’T do, not things that we do “differently.” People need to accept that.

things yall gotta stop asking disabled people

“have u tried yoga?”
“have you been praying enough?”
“have you even tried to get better?”
“have you tried to lose/gain weight?”
“ever consider exercising more?”
“maybe it would help if you stopped laying in bed all day?”
“is it really that bad?”

  • me: yeah i have a chronic illness, so there isnt really any way to cure my-
  • someone: okay but
  • me: no
  • someone: have u ever
  • me: fuck no dont do it
  • someone: tried
  • me: dont say the thing dont you fuckin dare
  • someone: yoga?
  • me: ...fuck, fuck, why? why did you do it
@ people with disabilities that dont affect them greatly or every day

you are still disabled

your struggles are still valid

just because you arent sick all the time, it doesnt mean you arent sick.

just because you dont have many limitations, it doesnt mean you cant vent about the limitations you do have, because if your illness takes away even one experience/ability/feeling from you, its already taken too much.

dont let people invalidate you because you arent as “disabled as you could be”, because you are disabled, come @ them if they try to tell you youre not.

dont feel like you shouldnt be upset that you have this illness, just because it doesnt always affect you, or doesnt constantly affect you, it doesnt mean it doesnt affect you.

please dont feel like you have to constantly prove youre disabled, and if you do, remember that you are disabled, and you do have hardships and that you deserved to be believed.

I am so sorry you have to go through this, you shouldnt have to.

and above all

youre important and your issues, whether they be small or large, are important.

you matter.

No one ever teaches you how to mourn your health. You just realize one day that it’s gone, and you are not the same as you were before. Most days, it’s all right, but then something happens: you can’t go to dinner with your family because you’re nauseous, you can’t go hiking because fatigue and pain. You can’t you can’t you can’t, and then it hits you: you are irreversibly changed.

PLEASE DO NOT FORGET ABOUT THOSE OF US WITH DISABILITIES IN YOUR CRITICISMS OF SLACKTIVISM.

Anyone and everyone who can get out onto the front lines absolutely should at every given opportunity, but there are those of us who legitimately cannot do that. I know that many of us, myself included, will do whatever we can, but unfortunately that will often largely be limited to screaming about it on the internet. But the fact remains that it is of utmost importance to fight back in any way possible, to refuse to normalize this atrocity however we can. If you can physically protest, please do, but don’t forget those of us with physical limitations. We’re doing what we can.

#NOTMYPRESIDENT

yo, dont ever think someone who takes meds are gross or oveerreacting or wrong because they took a med that fell on the floor.

or they took a pill that got melted or exploded due to heat or something

or they took a pill and are now panicking because the pill didnt help

or they were going to take pills and now are panicking cause they dont have enough/lost them.

you do not understand how much pills cost, you do not understand how much they might need that one pill, or how horrible their day will be if the pill doesnt work or if they lose it.

do not judge them for needing that pill

if you hear a disabled person speak about the hardships their illnesses causing them and your first thought is “wow, imagine what their parents go through”

or “wow imagine what their boyfriend/girlfriend goes through”

or “imagine what their friends go through”

you need to stop and think about the situation again, because the disabled person is the one you should focus on, because theyre the one who is suffering from their illness, who is burdened and hurt by their illness.

their family members, friends, and lovers can be affected in an emotional sense, maybe a physical sense at some point but, they are not affected the way the disabled are. they are not hurting worse than the disabled.

and you shouldnt think of them before the disabled when it comes to the disability.

The cruelest part of this chronic illness is that it let me start with a normal life, Then it took it all away!
Dear able-bodied people,

Just because I am functioning, does not mean I am well. I can force myself to function when I have no other choice. It does not mean that I am having a good day, that my condition is not as bad as it seems, or that my condition is cured/well controlled. It simply means that I am operating outside of my limits out of necessity.

Just because I am functioning, does not mean I am well.