Wednesday, May 06, 2015

The Letter

Yesterday I received a letter informing about a film/book/project that they sender hoped I'd be interested in and as a result of that interest write about it. I get these all the time and, if you are a regular reader, you know that I only seldomly use this space to push any kind of product. I have done. I may do again, but I have to be really struck by the material.

I didn't even get to the material.

I couldn't get by the letter.

In it, when speaking about the primary person involved, it is said, "He doesn't see himself as disabled.

Think about that for a second, a letter is written to a disabled writer telling him about a fellow who, also a wheelchair user, doesn't seem himself as disabled. Oh, so, this guy doesn't want to identify with people like me, disabled people. This guy wants to make it clear that 'I'm not one of those'. Well. I am. This kind of statement from disabled people is lauded. It's seen as plucky and resilient but what it is is another subtle way of indicating that the disabled status is something that people, this person in particular, does not want to embrace. It indicates that whatever has been done or achieved has been done for the eyes and hearts of non-disabled viewers, 'I will denigrate the status of having a disability, even though it is clear that I have one, because that INSPIRES you non-disabled people.' That statement says that whatever has been made, or written by this person will act to reinforce prejudice rather than challenge it. No need to re-think disability - it's so awful that even disabled people won't admit to it.

Later in the letter the term 'differently abled' is used. Let's be clear. I am not differently abled, I do not have special needs, I don't have a diversability. In fact, let's be clearer. "Barf!" Again these terms, terms to make disability, which is a real thing, into a euphemism. I DON'T NEED EUPHEMISMS!! I am disabled. Get over it. The use of euphemisms when it comes to disability is a way of saying 'what you have, what you are, is so freaking horrible that it can't be plainly spoken.' I am a disabled man, who is part of the disability community, who has a point of view and life experiences that are rich and add to the human narrative. Do eradicate my voice by making me into a euphemism.

Finally it said that he met people who 'defy being defined by their disability.' Oh, freaking, rah. Nobody is defined by any one characteristic about themselves. I am not defined by being gay and I am not defined by being engaged, and I am not defined by being disabled. But that's not what the statement means is it. It means something darker. It means that people with disabilities should not allow their disability any meaning whatsoever. Well, dears, my disability has meaning. It reveals a different side to my character, that I didn't know was there, and it has changed, for the better, my understanding of my self in relationship to the world, my self in relationship to others, my self in relationship to itself. Disability matters, it matters in a wide variety of ways.

I raised these concerns to the person who wrote the letter and received a very respectful letter back and an opportunity to take some of these issues up with the person involved. I don't know if I'll hear back. I informed the letter sender that I was going to write about this on the blog but assured her that I wouldn't identify either the fellow or the product being spoken about. I don't do attack blogs in that way. I'll go after things like this but not the people behind them.

I believe we are at a time where we need disabled leaders and role models and spokespersons who will stand loud and proud and address the world as a proud disabled person. In a time where Peter Singer can say that disabled babies should be killed as part of medical policy, we need different voices, speaking of disability in a new, a different way.

And to do that, you need to be who you are and wear it comfortably. Disability needs to be a word that you can say, without flinching, without embarrassment and without embroidery.

Here.

Try it.

I'm disabled.

Get over it.

12 comments:

Andrea S. said...

Wait.

"Diversability"

This is a thing? There's actually someone out there who has said this "word" out loud, or put it in print on a screen or paper? There are people using this word?

Because if that is the case, then I have now officially Seen All The Euphemisms.

Until the next time I am boggled by the kinds of euphemisms people try to devise when they are too uncomfortable with the reality of who I am to just say that Andrea S. is deaf.

Tamara said...

I love this so much. I hear from the parents of kids with Down syndrome incessantly how much they hate the word "disability" and promote all sorts of other terms. I much prefer your way of thinking about it.

liebjabberings said...

But it's HARD to claim disability.

Okay: I'm disabled.

And I wouldn't be writing the books I'm writing otherwise, and I LIKE those books very much. I will not advertise them as coming from a disabled writer, nor mention the main character is disabled. She is 'just people.' If you dig deeper, and end up on my blog, you'll find out - most people just read the books that attract their attention, and don't care two figs who wrote them.

Being disabled makes me a slow writer. Tough. I like to think I am using what life handed me, but it isn't the only way to be, I didn't choose it, and it is frequently a pain to deal with. So?

Hope you are enjoying your engagement - I'm so excited for you two.

Alicia

AnyBeth said...

Now you've got me wanting to say it with embroidery. Like as a sampler. Maybe make a throw pillow of it or something. Dunno if I'll get around to doing it, but the idea sure amuses me.

Chris said...

Hi Dave, I've had a fair amount of opportunity to work alongside Deaf individuals over the years, and I've come to see that many of them don't perceive their deafness as a disability. I don't know that they necessarily embrace all the euphemisms such as 'differently abled' and the like, yet at the same time for many they feel that they have their own language and community and in doing so, seem to embrace that 'differently abled' identity.

The deaf community is an interesting one in a few ways, and is in no ways a homogenous group, so some Deaf individuals would be fine with saying that their deafness is a disability, and like you indicated, it isn't the only thing that identify with. Alternately, there are many Deaf individuals that embrace their 'capital D' Deafness, which I think in many ways explains why cochlear implants have proven to be very divisive in their community -- some feel that getting the implant is a betrayal of the Deaf identity, language and culture.

Anyhow, this meandered a bit away from your post, though I wanted to share this as an alternate perspective. I see that Andrea S is deaf, perhaps she has something to add or clarify in what I've written.

Andrea S. said...

Chris,
Thank you -- yes, the Deaf people I know (and deaf people, and hard of hearing people and also most hearing people with unrelated disabilities!) don't usually go for those "differently abled" euphemisms either, though for somewhat different reasons than other disabled people. To accept any euphemism would be to accept the idea that culturally signing Deaf people even belong in the wider cross-disability community (by whatever name/euphemism) at all, thus NONE of the labels, whether blunt and direct or euphemistically pretty are applicable. It would be like asking if Spanish speaking Latin@ American define themselves as "differently abled", it just doesn't apply.

I think, honestly, one contributing factor to why some Deaf people reject the "disability" label is because of the stigma of disability, and the same misunderstanding as the rest of the population about what "disability" actually means (some people think it only counts if you're completely incompetent in every possible human activity!). I have heard that some younger Deaf people today (I think meaning teens, early 20s, high school and college age) are becoming more comfortable with identifying themselves with the cross-disability community even while simultaneously claiming a culturally/linguistically Deaf community identification. I'm 45, so I mostly go on hearsay there about younger people!

But yes, some feel that recognizing the culturally Deaf signing community as a linguistic and cultural minority (which it is) is incompatible with deafness being a disability: to them, to recognize deafness as a disability is to invalidate the claim of Deaf people as a cultural/linguistic minority. My personal feeling is: Yes it's a cultural/linguistic minority for those who identify that way. But if you understand disability as being an interactive effect between a difference in how your body, sensory systems, neurology, etc functions and how the environment accommodates (or doesn't accommodate) your needs, then I'm comfortable defining deafness as being ALSO a disability, because although deafness in itself is not terrible (if EVERYONE was deaf, then the world would be designed around us and it wouldn't be as much of a barrier to anything any mores), living in a world designed for hearing people does genuinely put us at certain disadvantages. Same, really, for many other disabilities: some in the disability community/communities argue that there are only a few impairments that would still be a real problem even in a utopian society in which all disabilities were completely accommodated. The exceptions most frequently mentioned would be people who experience a lot of pain and/or a lot of fatigue.

My post, too may have meandered a bit from the point, but hope it is of interest.

GirlWithTheCane said...

As a physically disabled person (and "disabled" is my preference), these discussions on terminology are so interesting to me. When I talk to other disabled people, I bow to their preference for terminology, hoping that they aren't going to make me use something like "handicapped" or "differently abled" (most people seem to prefer "I have a disability"). I always like hearing, if have a preference, how they arrived at it. I know that mine have changed over the years, but I don't feel that I'm likely to change now.

When I hear disabled people twisting their self-descriptions into verbal pretzels to avoid using "disabled" or "disability", I can't help but think that there's a problem, as Dave talked about...there's a lot of internalized ableism there. That whole "I am *not* disabled!" from people who are indeed disabled makes me sad..

wheeliecrone said...

I have disabilities. That's what I prefer to say. I use a motorised wheelchair. I use hearing aids. There I am - disabled. In case you fail to notice, I also dye a section of my hair purple. Purple, dammit!

I take issue, however , with people say that I am "confined to wheelchair" or "wheelchair-bound". Argh!

I am, also, not an inspiration. Not. Like any other person with a disability, I am a person. With bits that don't work. That's what we are, Dave. In my opinion, people with disabilities are people. With bits that don't work. That may sound like an over-simplification, because disabilities can be extremely complicated and difficult to deal with, depending on which bits are damaged or broken, but the person is still a person. The person remains a person no matter how few muscles move or how little the person is able to communicate or how much or little he/she is able to learn. No matter how much or how little care the person needs - still a person. No matter how inconvenient that may be for the person's family, friends and staff - still a person.

B. said...

Yup, me too. compared to the socially accepted average human, I am disabled. It doesn't make much difference to my likes/dislikes, hopes and dreams, etc. I don't deny it but it mostly matters when I come up against social barriers or ignorant (superior, do-gooders, etc.) people. It's kinda annoying for a PSW/homecare to refer to me as sick. Are they not trained to be able to distinguish between disability and sickness?

There was also a short time of the weird Rick Hansen effect when for awhile I noticed an attitude of why wasn't I planning to do a marathon or climb a mountain or something. I had to find simple ways to explain it didn't have much to do with physical abilities. It's what a person wants to do, has a passion for or a vocation. sigh!

Mary said...

I agree with everything you wrote, Dave, but like Andrea S I am still reeling from "diversability".

Anonymous said...

I hear what you are saying, we are humans, but with differences. When I am making a stand for women, I am a women. When I am speaking for the disabled, including myself, I am disabled. When I am counselling a couple, I am married. When I am speaking about nutrition, I am a diabetic. You get the idea. I am not defined by one of these, but I am an amalgamation of all. Like a body, one part may be more visible than other parts, but I need all the parts to be a whole.

Anonymous said...

He is paying you a compliment not judging your disability. Differently abled celebrate your difference, disabled males it a negative stereotype. Embrace it.