Tuesday, February 15, 2011

A Statement of Fact

I have a disability.

I am a man with a disability.

I am a disabled man.

DISABILITY.

I do not have a challenge.

I am not special.

I am not differently abled.

DISABILITY.

DISABLED.

A very smart man, a man I deeply admire, once said to me, 'the more difficult it is to describe who you are, the more shame you attach to being'.

I was at a meeting where people stumbled over saying 'people who are labeled with a disability' and 'those who are considered differently abled and 'those mislabeled with disabling conditions'.

Yes.

I spoke up.

I was the only one with a disability in the room and I was being told by those without disabilities that my use of the words disabled and disability in reference to myself was evidence of self loathing.

Really.

Really.

I am disabled.

I have a disability.

That's who I am.

I am not a euphemism.

Disability, in the minds of some, is the condition that dare not speak its name.

Parents need to name the truth, not cling to fiction.

Children must grow in acceptance and hear words spoken plainly, words that describe, not words that hide.

Children must learn pride from love and from honest and open acceptance.

Children must hear from those closest that their disability isn't a source of shame.

Children must be told the truth.

They are not euphemisms. They are not mistaken labels. They are real. They are here. They are loved. Frankly. Out loud. Proud.

Disability needs to become the condition that outrageously claims its name.

I have a disability.

I am a disabled man.

I am a man with a disability.

I eschew any efforts to verbally euthanize me. To verbally eliminate myself from language. To hide in vowels and consonants that perform a wondrous sleight of tongue that makes the wheelchair, and me in it, disappear.

We need to ensure that others know that we know who we are. That we have the courage to be who we are, in language.

Disabled.

DISABLED.

DISABILITY.

That's me.

That's on my membership card.

We can not ever stare down a bigot if we do not have the courage to look our own selves in the eye.

DISABLED.

PROUD.

PRIDEFUL.

DISABILITY.

Get used to it.

I label myself with honest descriptors of selfhood.

I affix the label with care and tenderness.

I like being me.

I like being who I was intended to be.

DISABLED.

If you haven't got the point, I say it simply.

I'll even decorate the words so you can't miss it.

My name is Dave, I have a disability, I am proud of who I am.

17 comments:

Cyndi in BC said...

Hi Dave, I love your blog!

My name is Cyndi. I am a woman with a disability. I'm the fat lady in the wheelchair. :)

When I read your blog posts I very often think to myself, "Yeah, what he said!"

Yo Mamma Mamma! said...

My very very favorite post you have written. We were just talking about this subject on a down syndrome moms message board I am a part of. I feel strongly that my daughter know that down syndrome is a part of who she is. That we talk about. She knows, at 3 years old that because of it, she needs to try talking even if it isn't easy. She knows her family loves her including her wonky extra chromosome (as my 11year likes to call it.) I want people to look at her - to see her. She is more than ok, including that. And I am certain that you are more than ok, including your wheelchair, not in spite of it. Keep the great posts coming (and I am off to listen to I Am What I Am, a great anthem of what you have so eloquently described in this post - "I don't want praise, I don't want pity!")

Yo Mamma Mamma! said...

Should clarifly, the George Hearn version from la cage, lol, not Gloria gaynor. Watch it on YouTube...

Clay said...

I'm Clay, autistic and proud.

Elissa said...

Thank you! Well put as usual!

Anonymous said...

Hi Dave,
What a challenge to raise my boy to one day say......
My name is Robert, I have a disability, I am proud of who I am.

Great post!
I love the way you are challening that anger from yesterdays post..I can feel the change in the air!

love Linda ( LinMac in Dublin)

Mathew D. said...

Children must learn pride from love and from honest and open acceptance.

This.

So hard, this.

And it's one of the values I hope and plan to raise my almost-two-week-old daughter with. This is yet another awesome post. Thank you.

My name is Matthew, I have a disability, and I am proud!

Andrea S. said...

This reminds me of a conversation I once had with someone some years ago

I found out through someone that apparently some people were in the habit of referring to me as a person "with a hearing impairment." I knew they meant well by it and were simply struggling to find the most polite term, so I was nice about it but still made it clear to the person who was talking to me that, actually, I prefer to be described as a person who is "deaf" not hearing impaired. (I was hoping that she might pass this back to the people involved.) And her response was, and this is probably not the exact wording but fairly close to it, "you realize that actually makes it sound worse?"

Excuse me? Since when do hearing people get to define for me, or for the wider culturally Deaf community as a whole, what terminology I get to use for myself? Don't I get a say in what terminology is appropriate or "sounds okay" when describing ME? If hearing people have difficulty with the fact that, YES, many culturally Deaf, signing people happen to be proud to call ourselves DEAF (and NOT hearing impaired) ... if the term "deaf" sounds somehow "harsh" to HEARING people to whom the term doesn't even apply ... then they're the ones who need to examine their attitudes about WHY they are so discomfited by the idea of a person being, yes, DEAF ... or a person WITH A DISABILITY ... or a DISABLED PERSON that they can't even bring themselves to SAY it. If you have to cloak it in euphemism then there's something more seriously wrong going on here than the correct "word choice." And that's with ATTITUDE toward disability.

I often feel conflicted when people spend too much time worrying about terminology and not enough time about more important things like ACCESSIBILITY and INCLUSION and so forth. I think, frankly, that people who assume language influences attitude have it (mostly) backwards. The language we use has at best minimal influence on our attitudes. I think it is our ATTITUDES that influence how we interpret language. If people view disability as inherently BAD ... then ANY term that becomes attached to "disability" becomes "bad" through association. This is why some people struggle so much to find the right "euphemisms" to describe disability--you can't ever find the right term to describe it if all terms automatically become "bad" just by being associated with the very CONCEPT. I feel it is, as a general rule, far more important to attack the underlying attitude toward disability FIRST ... then after that, whatever terminology gets attached to disability, as long as it is not blatantly problematic in some other way, should not acquire the same negative connotations.

So this is my usual position on word choice. BUT. I do also simultaneously feel that people have a right to define OURSELVES. If a member of a group says, "Actually I prefer to be called X" then as a general rule, that should be respected. This should generally be followed even when members of group X choose a term that may make others feel uncomfortable. If it's not your identity, not your group, not your membership, not your community ... then you don't get to decide what terminology is "insulting" to us or not. If we choose a term that might initially sound "insulting" to you--don't tell us we're wrong, ask to be educated. Or get on the web and educate yourself. And consider if you might need to learn to view the language--and your underlying attitudes toward disability--differently.

Andrea S. said...

Incidentally, all of you who are speaking of disability PRIDE ...

... Will LOVE this video: (has captions)

http://www.youtube.com/watch?v=uxxomUVsSik

Rachel said...

Preach it, Dave!

cangell said...

I love this post. Thank you for writing it. While I am not disabled it still struck me and I found myself thinking of so many things in my own life that this strong, proud message could apply to. Thank you for making me think.

Jenny said...

Hi Dave,

I am Jenny, I have multiple disabilities which make me who I am but do not define me as a person! I am proud to be part of the disabled community! :)

Thank you for putting into words what I want to say! I'm going to share this with as many people as I can! :)

Cyndi in BC said...

The two phrases that I read and hear all the time are, "wheelchair bound" and "confined to a wheelchair". I don't feel bound or confined to my wheelchair. It gives me FREEDOM to live my life, go places, do things. Without it I would be "confined to my home" or "housebound" as I was for many years before getting my powerchair.

With my powerchair I can use my limited energy to do things I enjoy rather than using it all up getting from A to B.

Anonymous said...

NOTE TO YO MAMMA MAMMA!

Just to say quickly that I think you are on the right track with the messages you are trying to send to your daughter--this is pretty much how my parents raised me as a child with a disability (only one of which was diagnosed way back then, more labels came later) and I think I am happier and more well adjusted for KNOWING that ... YES, I am a person with disabilities ... AND I'm a good person, with the disability as part of that overall package, not somehow in "spite" of it ... I think this was far more effective in strengthening my self esteem in my growing up years as opposed to the very well meaning but often disastrous approach that many many parents try which is to sort of pretend the disability isn't there at all and pretend that the child is actually "normal" and "just like everyone else" ... this is always meant well and always done with very loving intent. I have known people with various disabilities whose parents tried to raise them with the message that "You're not actually disabled because you can do X, Y, Z, therefore you're okay" ... and in my (admittedly unscientific) observation this seemed to make it far MORE difficult for their child to really accept themselves because sooner or later they would realize, "Wait ... yes it is true that I can do X most of the time, and Y some of the time if I do a few little tricks that I have taught myself over the years, but when people say I'm doing Z they don't seem to realize that half the time I'm actually faking it ... and I also seem to have trouble with A and B and that can't be normal either" ... so they wonder what's wrong with them that they CAN'T actually be like everyone else, are they lazy, are they stupid? It can actually become a huge, huge relief to them as teens or adults when they finally finally learn their diagnostic label and learn what it ACTUALLY means for them (instead of what others, including maybe their parents, FEAR it could mean for them). And even then, they may continue to struggle with self esteem issues for YEARS after wards.

Whereas, the people I have known who were raised like me, with the full knowledge that YES we have disabilities, and hey we're great awesome people! Tend to end up more comfortable with the idea that YES WE ARE DIFFERENT, and that's okay because DIFFERENT IS GOOD ... we don't have to navigate the world without labels in order to be okay, and we don't have to be the same as everyone else to be okay. OTHER people may have problems with our labels or with our differences ... but if they do, that is THEIR problem to learn how to deal with. The label or the difference is not the problem, people's REACTION to labels or difference is the problem. You can't fix the reaction by taking away the label ... the label is really just a name for what people are REALLY reacting to, which is DIFFERENCE! You also can't fix the reaction by pretending the difference isn't there--because it IS! You can only fix the reaction by helping to teach people that labels, and difference, and disability are not inherently bad things ... and can even be good things, or at least neutral.

So, Yo Mamma Mamma, keep on rocking, I think you're on the right track with your little girl! (Who looks adorable in that picture!)

Dave Hingsburger said...

Thanks for the comments, particularly the support flowing back and forth between parents and people with disabilities. These are conversations that need to happen. I'm proud that its happening here.

Helen said...

Hi Dave, we met at the DS conference in Edinburgh last year & this post sums up what I most enjoyed about your talk. I'm a clinical psychologist. I diagnose kids with Learning Disabilities. I spend a huge amount of time helping parents to understand that there is nothing "bad" about having learning disability and that calling it a "learning difficulty" or "special needs" doesn't make it any "better". I'm fighting an uphill struggle as colleagues in Education & Social Work just can't cope with "Disability" and "Labelling". They miss the fact that it can be empowering for Parents, and therefore kids, for them to understand & accept their child's disability.
H
(sorry for all the quotation marks but they seemed necessary)

Lene Andersen said...

and yet again, it is those without the disability who try to control who and what we are. Paternalism still lives on.

I like this post. No hiding, just be who we are and if that means other people get uncomfortable, then they are the ones with the problem, not us.