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Monday, January 3, 2011

What is in a Label?

I read many disability related blogs. The quality of the writing never ceases to impress me. Sure some blogs are poorly written but this flaw is negated by the thought provoking ideas presented. Some blogs are beautifully written and contain equally wonderful thoughts. I will not name names today even though that ranking disability related blogs would be fascinating endeavor. Regardless, I want to write about labels. I am inspired to do so by Eric who has a bog I regularly read, I am a Broken Man/You Cannot Break Me. In a post written on January 2 entitled "There is No Such Things as Disabled" he has thrown down the following gauntlet:

"How about we finally lay disabled to rest? I'd like to hear suggestions please. I'd like William Peace to put all 145 lbs behind this and chime in on what he thinks should replace disabled.
I looked at simply changing the spelling to dysability, but since dys still carries its meaning of bad or wrong, that won't work. Differently able. Different from Differe. My vote goes for differabled (leading to the use of the differability). I am quite serious so please leave your suggestions".

Eric does not break new ground in this post--a fact he points out. The important issue he raises is what is a disability and by extension how do we as a society disable people. I do not think of myself as having a significant disability in many social contexts. When I teach for instance my disability is not relevant assuming I can enter the classroom (this is no sure thing). Yet I am always perceived as having a significant disability--partial paralysis from the third thorasic verterbrae. This physical deficit is impossible to miss. I navigate the world using a wheelchair, a cool piece of technology in my estimation. This cool factor does not exist outside my household. My wheelchair is the ultimate symbol of disability. Society has a penchant for forcefully reminding me of my disability and inferior social status on a regular basis. If you doubt me, I suggest you try and use mass transportation or purchase a ticket to see a concert or professional ball game using a wheelchair. The point I am trying to stress is that society makes me feel disabled, it is a notion I cannot escape. Sure I forcefully reject this socially imposed inferiority but my staunch civil rights approach is out of the norm and at odds with what most people have learned or read about disability. What people think they know about disability is as old as it is out dated. Disability is a medical problem. Yes there is a physical element to disability that cannot be ignored but the real issues are largely social. A refusal to negotiate difference and as such disability based bias is the same as what other minority groups rail against. As an anthropologist I would maintain we people with a disability add another layer of complexity to our minority status. We are the other--outsiders within our own culture. We are in the words of Victor Turner "betwixt and between". We are not sick nor are we well. We are not purposely discriminated against but far from welcome. We are treated with benign neglect, out of sight and out of mind. Send a check to the poor bastards at Christmas time and thank out lucky stars we the all mighty normal people rule the world.

None of the above directly answers Eric question. I have an answer though I doubt many will like it. I reject labels and jargon. As an academic I know lots of jargon, lots of theories, lots of polemical arguments. Hell, I have engaged in such debates and never have felt like I learned a thing. I reject the word disabled. I reject the word handicapped. I reject the popular insider term gimp. I reject silly attempts at political correct terms that were fashionable for a nano second such as handicapable and physically challenged. I do not accept academic terms such as ableist because no one outside of disability studies scholars understands what the term means. I reject each of the above terms and years ago settle on the word crippled. Go look it up. Crippled in the dictionary refers to a physical deficit. That is it. Look up disabled and all sorts of connotations are associated with the word I reject. Cripple too has much cultural baggage. I want people, strangers and the uninformed, to think about this baggage. I want them to think--why would a man such as myself use the word. Cripple stops people. Cripple gets one's attention in a way that disabled or handicapped does not. People cringe when I use the word cripple to describe myself. My niece, a wonderful woman and program coordinator at an adaptive sports program is acutely aware of disability issues. She is a gifted person in dealing with those that have cognitive deficits. But when I use the word cripple she cringes and says "Oh, Uncle Bill!". I use the word not for her but the hordes of ignorant. As I have written many times all that people are taught about disability or appears in popular culture is dead wrong. The real problem we people with a disability encounter is the mainstream. Cripple makes these people think--it is not a word used regularly nor is it politically correct. I want to stop people as it is just too easy to gloss over disability related issues. In a newspaper for instance it is easy to glance at a headline "Budget Cuts for Special Education" and think ho hum and move on to more important issues. In contrast, a headline such as "Cripples Protest Budget Cuts" will make one read the article. Likewise, my use of the word cripple forces people to think. In choosing cripple I was inspired by Ed Roberts, founder of the independent living movement, who wrote about "cripple power" in the 1970s. Roberts is my hero. He is a cripple I admire. I am a cripple and embrace this word in the hope it makes others feel uncomfortable. I want people to be uncomfortable because I want them to think about my civil rights. Those civil rights are ignored, belittled, and violated even though it is against the law. One final silly point. I do not weight 145 pounds. I have lost weight since the Fall and developed my wound. I aspire to be 145 or even a buff and manly 150 pounds.

10 comments:

Eric said...

Bill, thank you for the comment and the response. Obviously I was not looking primarily for a new word to bandy about, but rather, exactly what I am getting, responses by people who have thought long and hard about it as well as lived it. My experience of the matter is for the most part through my son who is so decimated in his existence that you could say he is absolutely discriminated against, with no system or treatment facility which can accomodate his needs.

Also my discussion of the office building, where stairs function for able bodied people the way a chair functions for you is a statement for myself to achieve more focus on the idea of "altered ability".

One day perhaps technology will have advanced so far that a child like my son, where lurks a human being capable of love and many more things, will be able to interact with the world and have his status upgraded to that of "cripple".

The extra weight I awarded you, by the way, was an accommodation for the amount of gumption that I believe you possess.
Best wishes for health in 2011

william Peace said...

Eric, You raised a very complex issue I am not sure can be solved with a few posts by me or you. Ideally I would like to sit down and discuss this face to face. What you did do was inspire me to think and write hence I am in your debt. I think all people should aspire to the world of the crippled. Most of us will have the experience whether we want to or not. One thing I have never doubted is the humanity of your son and others like him.
Gumption I have in abundance. Others have used a different set of adjectives to describe me!
Best wishes to you in 2011 as well.

Just Another Somebody said...

You and Eric are good writers and you both deal with topics that I thinks everyone should read and think about.
As a mom, dealing with "labels," I have mixed feelings. I prefer the cultural perspective. However, I realize that this point of view can (to the extreme) minimize the reality that there is pain in my daughter's life.
It's a process. I'm learning ... who am I? Where do I begin and end? Who is she? Where do we overlap? Accepting the lifestyle "culture" for what it is. Having compassion vs. pity. Advocacy vs. control
I know that I'm rambling on a bit ... but you've had a series of posts that have been very helpful in giving me thought. Thanks and look forward, always, to what you write.

ginger said...

William,
You have been wearing out your typing for a hell of a long time. Your book listed on Amazon, unfinished, has been there for over two years.
Why don't you put your money where your mouth is and compile your "knowledge" and have it published on blurb.com. No charge.

Renee said...

I stumbled across your blog today while researching segregation of disabled people to hopefully raise awareness of the issue through FB, etc. I read your blog because of the title. You're right; it is an attention-grabber, and it did make me think.

I have a BA in cultural anthropology and work as a service coordinator in an ICF, where there is a constant battle of what language to use, and the segregation inherent in the system is the secret so obvious that no one talks about it.

I am happy, however, that the way the system fails people and the ways in which society fails to facilitate equality is finally making the news as a Civil Rights issue. I feel that this too is a case of language changing people's perspectives. In the past, I've always seen it framed in terms such as "care," "treatment," and "neglect." Civil Rights were rarely mentioned. The earlier terms further empower the people who already hold the power. "Civil Rights" gives the power back to those who have had their power taken away.

Anyway, I just wanted to drop you a line to let you know that I've been enjoying what I've read so far and that I'm doing what I can on my end to work myself out of a job.

On-Screen Keyboard said...

I'm 25 and have been disabled with muscular dystrophy my whole life. In the last 3 years i for other reason have had lung failer and total kidney failer. You have a nice blog but why do you feel this need to "want" to use the lable to make others uncomfertable. Just to get people to be aware so you can protect your rights? Thats one way to go, but you also need to learn how to fight for those rights and you can do it by not forceing "normal" people to feel uncomfertable. You don't need to go draw a pity card, the way you use the term is exactaly that. You seem to want pity, to want to make others feel bad. Using the term cripple is a privlage, not an evil power to use try and be mean.

You said "Society has a penchant for forcefully reminding me of my disability and inferior social status on a regular basis." Ummm dude its alot less when you act like yourself and not your alter ego Cripple man. You are only making yourself be reminded more and more, especially cause you have it out for other individuals. Be a person not a label especially if you want to blog about disabality.

The term cripple is soo overused, every confident disabled person i have met uses it in some form. You don't NEED it, guess you are a bad cripple and a poor example to others. Mature your perspective.

Carl said...

Hello William,

Great blog you have here, and this is indeed a great post.

I'd like to direct you if I may to an article on a disability website I have the pleasure of working for - http://www.abc.net.au/rampup/articles/2010/12/08/3088258.htm - It is not written by me, but the aforementioned article raises many similar points you've discussed here, as well as some highlighting a divergence of opinion.

If you're interest, I myself write a disability related blog. Please have a read if you feel like it - http://workingatperfect.blogspot.com/

Regards,

Carl.

william Peace said...

On Screen, I appreciate your critical comments. Perhaps I should clarify my words. I do not assert my civil rights when I do not need to assert them--this would make no sense and be counter productive. No need to make those that treat me as a person with a disability with respect uncomfortable. as you surly know however people with a disability are not treated with respect on a regular basis. When this happens I assert myself. This is productive and I try to get those that do not think people with a disability are sentient to think otherwise. When the the ADA is violated as it regularly is I make sure others know it. For example if I see an MD at a large medical practice and there is no accessible examination table I make a point of complaining. When I am treated like dirt at the airport because airline workers think I am nothing more but extra work I file a complaint. The point I was trying to stress and have in all my posts is that people with a disability have civil rights. I make those unwilling to acknowledge those rights uncomfortable. To those that respect me and support my very ordinary rights I am very friendly.

Rene, Welcome fellow anthropologist! Delighted to know you have gotten something out of my ramblings here.

jitterbug099 said...

William,

I wanted to share the following quote with you although chances are good you've heard it before:

Act as if what you do makes a difference. It does.
- William James

Although I may not agree with all that you write in this blog, I thank you for having it.

If nothing else, it has made a difference for me and for that I am grateful.

william Peace said...

Jitterbug, That is a great quote. Thanks for sharing it and your and words. Glad to know my words resonate with you. Difference of opinion is welcome--it is how we can all learn and hone our views.