Since it's been reposted and metaqoted, perhaps I should post it myself

[nightengalesknd]

This is something I posted on disabled_rage yesterday in proximal response to a conversation I had at work last week, and in longer term response to, well, every time I hear,



This just gets my ire up, every time. It's said to me in the most earnest, "supportive" sort of way, by the most well meaning sort of people. Which makes it all the much harder that every time I hear it, I want to sock them.

The problem with not thinking of me as disabled is that you invalidate my needs as a person with a disability. You forget to put in ramps, or you put wastepaper baskets in front of the elevator buttons, or you put the sign in sheet for lecture at the front and I can only access the back. You forget to tell me ahead of time that there will be a written requirement to this workshop. You don't give my blind friends access to their textbooks in Braille until the class is half over and you hang up on TTY users.

No, not you personally, but this is the logical extension of not thinking about me as having a disability.

"But there's so much you can do!" they protest, when I say that I am, in fact, a person with a disability and would appreciate being considered as such.

Sure. Having a disability in one area does not mean having a disability in all areas. I can work full time. I can live alone. I can park in regular parking. But I still have a disability. And would appreciate being considered as such.

"But we all have strengths and weaknesses. I can't draw and I'm bad in math. That doesn't mean I have a disability!"

Sure, we all have strengths and weaknesses. People with and without disabilities have strengths and weaknesses. But the strengths of a person with a disability are not magical compensatory superpowers that negate the disability. And as for your inability to draw or your relative weakness in math, those aren't disabilities. Unless they seriously limit your function in one or more major life activities, such as seeing, walking, using your hands or working and you need legislation to get through your day. Some people's math disability is that limiting and for them it is a disability. I suspect yours is not.

Would you say "I don't think of you as female?"

"No, that's totally different!"

And there you have it. The reason they don't want to think of me as disabled is that they equate disability with something inferior and bad. And they think they do me the compliment of not wanting to equate me, a peer and colleague and perhaps even someone they genuinely like, with something inferior and negative. And that elevates me comfortably in their heads as more like themselves, and less like those people who are "really disabled."

Not thinking of me as disabled, in addition to limiting my access and accommodation options, means not thinking of me as me. It's like pretending I'm a different gender, race or religion, all of which would also make me someone else. My disability isn't bad, and it isn't all of me, but without it, I would not be me. Instead of trying to distance me from this fictitious bad thing, how about learning what disability culture and community means to me? how about learning about my struggles against discrimination and learning how to combat prejudice within your own sphere of influence?

So please, non-disabled people out there, if you want to be my ally, accept all of me. And please think of me as disabled. That makes me think you actually know me, and not just a portion of me. Then help me fight for equality, access and accommodations for those of us who are disabled.

Comments

[aries11.livejournal.com]

I accept you 100% just as you are, disability and all. :)

[nightengalesknd.livejournal.com]

Awwww, thanks!

[mongoosenamedt.livejournal.com]

i agree with you completely and totally.
i get that ALL the time. "but you can still hear" or "i forget you can't hear," it's like, thanks, now speak slightly louder and enunciate.

[nightengalesknd.livejournal.com]

Yeah, and they make it seem like "forgetting" is some huge complement. You'll have to report back on how Ireland measures up in the awareness department!

[mongoosenamedt.livejournal.com]

right, like, omg, you're so much normal than i thought.

and considering that there is no legislation requiring them to make "accomodations" for the disabled, UCD still has a disability office that offered to make sure my dorm was one of the ones wired for those hearing-impaired students.
i'll see what the layperson knows though.

[nightengalesknd.livejournal.com]

I think it's very much the same deal.

And I agree part of the problem is that people just don't know what to say or do. Which is not for the lack of activists out there advising people what to say or do. . .

[nightengalesknd.livejournal.com]

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<a href=http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf" The spoon theory</>

I post a link to it about once a year!

And yeah does she not have my BMC addy? firstname.lastname @alumnae.brynmawr.edu

[nightengalesknd.livejournal.com]

Er fine, so I can't link directly to the PDF. It's on

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Er fine, so I can't link directly to the PDF. It's on <a hfref"http://www.butyoudontlooksick.com/">this page</a>

[nightengalesknd.livejournal.com]

THIS page (www.butyoudontlooksick.com)

[q10.livejournal.com]

[I know it's not the same deal, and I don't want to sidetrack everyone, but I also get upset when people say that ADHD or Asperger's aren't also disabilities, or that they're totally made up by the drug companies/medical establishment/crazy or lazy parents. That's my two cents.]

on behalf of those of us who have those conditions and have from time to time said things sorta like that, i think it's shorthand for something more complicated than you're giving it credit for, something along the lines of ‘my lack of patience with your bullshit and lack of ability to care about your funny body language rules does not entitle you to try to drug me into compliance’.

[teacup-werewolf.livejournal.com]

ut I also get upset when people say that ADHD or Asperger's aren't also disabilities, or that they're totally made up by the drug companies/medical establishment/crazy or lazy parents.

OH TOTALLY WORD

As aspie myself this frustrates me when people say that

[windsornot.livejournal.com]

I was about to say the same thing, especially since my son is really, REALLY struggling with his ADHD these days, and he also has apraxia, which complicates matters big time. He is intelligent enough, and does very well with his academics, but other aspects are just...difficult, and since they are "social" disabilities, not physical in the same sense (I don't agree with that, but you get the point), they are not seen the same, when in actuality, they really are. And only realizing that I have many of the same disabilities as he (he's worse off) but didn't get the REAL support needed, makes it all that much...annoying. Perhaps I would've have had to had many of my life's difficulties if I had better or proper support for my ADHD growing up. It could be said it made me stronger for learning things the hard way. But does life have to be hard? No. I think that's the point. Equal playing field is all that anyone is asking for, no matter what the disability is. Right? And accomodations to make that vary from person to person. And yes, some need more accomodations than others, and some will still not be able to do certain things, but again, it's all about trying to level the playing field, methinks.

[crystalpyramid]

Thank you for reminding me. This was something I needed to read.

[nightengalesknd.livejournal.com]

You're welcome.

[squidia.livejournal.com]

reminds me of how a German roommate of mine once said she didn't think of me as American because I wasn't a "normal" American. I just wish now that I'd pointed out to her that her perception of what "American" means should be changed after knowing me. And a Brazilian friend of mine told me since then that I am more like a Brazilian than an American... hmmmmm. I guess it's just so much cognitive dissonance for people when they try to match us as individuals with their mental image of what a "disabled" or "American" person should be like that, rather than do the work of evolving their concept of what it means to be "disabled" or "American", they just disassociate us from that concept/image entirely... *hugs*

[nightengalesknd.livejournal.com]

Yeah, it's meant as a complement - you don't fit this sterotype I have in my head! Rather than changing the sterotype.

[chasingtides.livejournal.com]

Yes. Yes. Yes.

Every time I hear, "I don't really think of you as disabled," I know they mean well in their heads... but it always leads to things like, "But what do you mean you can't come running with me/go on long treks around the mall/go on a three day hike?" And really, if they just remembered that I'm disabled, a lot of problems wouldn't even occur.

[nightengalesknd.livejournal.com]

That's the thing - it's always the people who mean the best in their heads that say this. So smacking them upside with the cane isn't a great solution. But - how hard it is to remember?

[jendle.livejournal.com]

Yes, yes, yes!

And the other one that gets me is the "we have to remember to be sensitive to your needs" -- like it's a matter of niceness or empathy to do stuff like reserve a seat for me in the front so I can lipread, or provide a phone amplifier, or whatnot.

[nightengalesknd.livejournal.com]

Yeah. When accommodations are billed as favors I get very antsy. Favors can be withdrawn at the whim of the giver.

[q10.livejournal.com]

i agree with you completely, but i have to wonder how much of this issue has been created by poorly-thought-out disability community advocacy. i recently witnessed a disability-rights protest where there were a whole bunch of people holding signs that said ‘we have abilities, not disabilities’ which could easily be (mis-)interpreted as ‘don't think of me as disabled’.

[nightengalesknd.livejournal.com]

I agree this is definitely a contributing factor. There are plenty of people with disabilities who have that perspetive as well. And I can't say I'm right and they are wrong, but I can say their message frustrates me.

[maccaj.livejournal.com]

Amen.

When I landed back home after denver, I sat and waited for the plane to empty, because I can walk, *or* carry my bags, but not both.

A flight attendant came by and said "Are you an unaccompanied minor?" Which, besides being mildly insulting (since I was utterly covered with various things that said "Delegate" along with 75% of the rest of the passengers), caused me to wonder that if I *were* an unaccompanied minor, would I know what "unaccompanied minor" meant? I digress...

My reply: No, I'm disabled. I can walk, I just need someone to carry my bags off the plane... my chair's already at the end of the jetway, so I'll be fine from there.

To their credit, they happily helped carry my bag (unlike the snotty and entirely unhelpful response I got on the way *to* Denver, which was another story).

But as I was walking off...

"Oh, honey, if you hadn't told us, we could NEVER tell! You get around GREAT!"

My thought: Why yes. That's because I'm hanging onto the seats for balance, and *not* carrying my bag.

Oy vey.

[nightengalesknd.livejournal.com]

Actually that reminds me of a story from my teaching days. I was working at a residential school for kids with ADHD who had not suceeded in traditional settings. Whether ADHD itself is a disability or not, our kids needed to be in a dedicated setting for academic and behavior instruction and probably could be considered pretty impaired in some ways. And we had kids from all over the country, so every two months or so a couple of faculty would be dispatched to the airport to put the kids on planes for break or fetch them up afterwards.

Some of our kids flew actual "unaccompanied minor" where we had to sign for them at the gate, but others were OK on the plane but couldn't (or we didn't trust them to) get from the plane to a central meeting point alone. To get permission to bring these kids to and from the gate, we had to get permission from the ticketing people, and they had a form to check. I usually checked "meeting a minor child" but one day my coworker checked "meeting a person with a disability."

One of the kids, 11 or 12 years old, and with some of the most difficulty with social interaction and life skills of any kid we had at the time, saw this form and absolutely hit the roof. "I don't have a disability!" she shrieked at the top of her lungs.

Well that's a kid who knew what "unacompanined minor" meant. I chose not to use that day to explain to her what disability meant.

[maccaj.livejournal.com]

LOL... oh my. It's not funny, and yet I'm laughing hysterically. :D

[nightengalesknd.livejournal.com]

Well, after she calmed down, I thought it was extremely funny.

Also, welcome home.

[maccaj.livejournal.com]

thanks! trip home was thankfully, incredibly smooth. still have lots and lots of pics to post, since I was in the front row on thursday!

[queenlyzard.livejournal.com]

Very well said. Mind if I repost this over at my place? I think a few of my friends would appreciate seeing it.

[queenlyzard.livejournal.com]

ps-- you might also appreciate this entry.

(kudos to [Bad username or site: @ livejournal.com] for remind me of it)

[nightengalesknd.livejournal.com]

Sure!

And yeah, feyandstrange's entry is just great. Although the fact that she needed to write that is just sad. I've seen advice for the media not to say "wheelchair-bound" for around a decade.

[queenlyzard.livejournal.com]

I confess, that was the first time I've heard of it. I never really thought about it before in the sense that it implied being stuck in a wheelchair. Then again, I haven't had much experience with people who have on-and-off mobility, either. I guess I did kinda assume that people who used a wheelchair used it any time they moved around, whether permanently (as in paralysis) or in a temporary situation like having both legs broken. But I also wouldn't have been an ass-- as some people seem to have been-- and been shocked at someone's having a wheelchair but also getting out of it to walk short distances. Really, that makes a lot more sense for most situations.

[nightengalesknd.livejournal.com]

There is the problem that most people assume that wheelchair users are full time wheelers who can't walk at all. Although even full time wheelchair users are still not in the chair 24/7 - at a minimum people do get out ot go to bed!

But the bigger issue is the idea of a wheelchair being binding or confining. Consider a person who can walk a few steps, maybe across the room but who can't walk around outside. Under current Medicare rules, this person is not eligable for a power wheelchair. (They won't fund one for anyone who can take a single step, with or without support.) So this person, if they don't have good private insurance, would be "confined" to the home. But if they had a wheelchair they could go out and garden, shop, maybe even work. The wheelchair is the tool of liberation. It's so hard to equate that in my mind with words like "bound" or "confined."

[queenlyzard.livejournal.com]

Well, I knew people didn't sleep in their chairs! ...Unless they nod off, I mean.

I did not realize that people with only limited mobility didn't qualify for wheelchairs under medicare-- that sucks. I know perfectly well that being able to walk across a room is not the same thing as being able to walk around downtown! Hell, by that standard my aunt may not qualify-- she can just about shuffle a few steps if she's hanging onto the nurse's arms.

When I say I never thought about the meaning, I guess it's one of those terms where I always focused more the way it sounds (in an almost synesthetic appreciation) than on the literal interpretation. "Wheelchair-bound" has the same sort of literary ring to it, in my mind, as "bed-ridden" (which is also not usually an accurate description, but it sounds rather romantic). It brings to mind, for me, characters like Clara and Colin.

That being said, I can understand how frustrating it must be to think of it as a limiting term for such a useful device! How's about this, then: Wheelchair-Bound-For-Adventure! (better use of the term "bound," n'est-ce pas?)

[17catherines.livejournal.com]

Just popped in to friend you after splodgenoodles's recommendation. And because you write interesting stuff.

(I thought I'd mention this in case you were wondering who your newest stalker was and where she came from)

Catherine

[nightengalesknd.livejournal.com]

Hi!

I asked <lj user="splodgenoodles" to introduce us after I posted today about prenatal testing. It's flocked, should be up now.

[17catherines.livejournal.com]

I'm flattered!

*goes off to read your post*

[crazylou08.livejournal.com]

Awesome! I'm in a wheelchair full time but I've got a friend whose well-meaning g/f told me once "He's so cool everyone forgets he has CP!" And it frustrated me because I didn't know her well enough to say "Yeah you forget he has CP so he pushes himself to keep up with you and ends up in pain by the end of the day.." She meant as a compliment and she's a sweet person but it annoyed me.

[nightengalesknd.livejournal.com]

Not to mention, when does "having CP" mean a person can't be "cool"? The two don't contradict each other.

Welcome!