Monday, June 11, 2012

A different take on the R-word

















By Laura Rosen Cohen

I have a child with a genetic disorder who is mentally retarded.

That means that he has cognitive delays and is unlike regular children. He has a difference in his genetic make-up that affects his physical and intellectual abilities.

In the past, individuals with mental disabilities have been called mongoloids, morons, cretins and imbeciles. More recently, the term “mentally retarded” has been used. Now it is fashionable to say that people like my son have developmental disabilities or that they have global developmental delays. I’ve probably used these terms myself on various medical forms, school applications and whatnot.

I don’t, however, have a problem with the term “mentally retarded.”

I do cringe when “retard” is used as an insult, just as I would if I heard someone use “Jew” pejoratively, or as an adjective (“Jewing” someone down in price), or the unspeakable (which seems acceptable when some rap stars say it) “N” word to describe black people.

What I object to is the idea that someone’s reality, the way they were created (in my view, by G-d and in G-d’s image) is contemptible and an insult. I’m not talking about their opinions or politics – just the state in which they entered this earth: disabled, or blind, black, brown, Asian or whatever.

I object to all forms of censorship.

I believe it’s wrong to ban thoughts and words.

In a civilized society, undesirable speech and behaviour are self-policed.

Attempting to ban the word retarded won’t help children like my son.

It just means that people have to tip-toe even further around reality, and become ever more frightened of offending parents and relatives of those with disabilities. Aren’t there enough sensitivity minefields out there already?

That’s why I think the campaign against the R-word is misguided and troubling and bound to fail.

Why?

Because it skirts the truth.

The truth is that we parents of children with intellectual and physical disabilities are terrified that our children cause revulsion. We are afraid that people will abuse and disdain them, and that they will lead meaningless lives.

We are terrified that because our children are mentally slow or trapped in their bodies they won’t get the education they deserve to live up to their potential – whatever that may be.

We are afraid that other than us, who is going to care for them when we can’t? What if they languish, like vegetables? What if their siblings can’t handle it? What will happen to them when we die?

Will someone hurt my child? Trap them? Abuse them? My other kids can talk. My son can’t.

We die a little inside every time strangers stare at our children, or make fun of them.
We do wish that our beautiful and often helpless children were not burdened by their intellectual and physical handicaps. We sometimes, even often, wish we could make it all go away, but we can’t.

We have to live in a world that has progressed but still reviles disability for the most part.

We know that many people are disgusted by our kids and have no patience for them.

But we love them, live for them and would die for them.

Many parents, instead of talking about these dark fears, direct their efforts into campaigns against words, when what they are really worried about is that their kids are being treated as human garbage.

But nobody can be forced into loving our children, or treating them with dignity and compassion.

That kind of grace and charity can only be innate; it can only come from within. Isn't external enforcement of tolerance for any group an oxymoron, by definition?

Banning any particular descriptive will not change social attitudes. Tinkering with language will not affect a fundamental discomfort. An example is food. A food that someone dislikes can be named something else, but if the texture or smell or appearance makes someone uncomfortable, it doesn’t matter what it’s called.

People will still stare and feel pity and revulsion about the disabled no matter how we characterize their intellectual or physical states.

I’m not sure that it’s a wise use of energy to try to change attitudes. That is done through real experience – by hanging out with disabled people. But that is not everyone’s cup of tea.

I think our best hope for changing perceptions is to live our lives with our children and fearlessly incorporate them into society.

But their value needs to speak for itself.

We can’t force, campaign or “language-massage” anyone into loving and respecting our children the way we do.

We can have an honest conversation about our deepest fears for them. And maybe we can put our energy into productive programs to protect our kids, like an extended circle of watch.

9 comments:

I'd like the word returned to it original intent and not be used as an insult. It terribly hurts those who are officially so labeled and those who love such folks. That's the simple reason why I would like to have the word become a slur to those who say with mean intent, just as the word "Jew" is considered a slur on those who use it in a derogative way, but not when properly used.

While I appreciate your sensitivity, I have to disagree that beginning the very slow process of changing the culture is to begin with words. I think it's supremely important and find "retard" as derogatory as "nigger," only not as far along in the "verboten" category as the latter. Many people have said it better than I, though -- namely Robert Rummel Hudson here: http://www.schuylersmonsterblog.com/2011/05/just-word.html

Soeren Palumbo is a co-founder of the “End the Word” campaign. When he was in high school, he wrote this speech:

http://onalifelessperfect.blogspot.com/2012/03/young-boys-thoughts-about-word-retard.html

It was these words that inspired the movement not as you say to “censor’ the use of this word, but rather to create an awareness of how hatred is spread first by our use of language.

Since you are seeking the truth, the campaign was not created as the end result of a parent’s fear as you claim, it was instead created out of the love of a brother for his cherished sister.

I do not believe that Soeren’s idea is misguided, troubling or bound to fail.

I think it will change the world.

I think you make some really interesting points Laura. I really liked reading your post- beautifully written and so honest! Like you, and as a writer, I'm certainly not a big fan of censorship.

On the same hand, I also believe in the power of words. When a word is used in a medically appropriate setting I have no issue with it. But hurled around as a thoughtless insult is definitely something that I will speak out against. It's funny that you mention food...did you know that a few years some manufacturers' decided to market prunes as dried plums, and sales dramatically increased? Or that paint companies often simply change the name of paint colours that aren't selling well and usually sales go up?

People could use a number of insulting words to describe me, because I'm South Asian, because I am a woman, because of my religion - the list goes on and on. And each and every time, I will speak up - because I don't deserve that. And each and every time someone uses the R word as an insult I will speak up, because no one deserves that, especially not our children.

Note that these are all mostly parent comments. I've taken my cue from friends and mentors with intellectual disabilities, all of whom actively dislike (probably safe to say abhor) the use of "mentally retarded" to describe them. I think its their opinion that might matter most, and so I let them lead me on this one.

Hello Everyone,

Upon reading this post, my heart went out to Laura. Nonetheless, I also know that one of our closest friends, Louise Kinross, would never accept an answer she didn't like. In fact, Louise would ask, "Why not do both --campaign against the R-word and create a circle of care?" She would do so in the name of journalistic independence, and as a mother, seeking justice for a boy with complex needs. For her, "The issues of education, acceptance, and safety are inseparable." They should be for us as well.

However, in the interest of providing a broader perspective, I need to ask one more question: "If placed in your shoes, "What would your kids want or do?"

For example, would your child wish to be isolated, regardless of how comfortable or splendid their suroundings? Or, would they also yearn to be part of a larger community, giving them a chance to contribute to society in their own way?

I am also a former client of Holland Bloorview, as I was born with cerebral palsy (CP), and know how cruel or hard life can be beyond its walls. I do not cringe at the words of crippled, freak or retard, as I can surprise and outsmart almost anyone. Others, will merely need a reprieve from the storm. And some must be protected.

Yours truly,

Matt Kamaratakis

I just had a thought: "Are we really campaigning against the use of some forms of language --such as the R-word-- or, 'Are we desparately wanting to change general social perceptions and attitudes towards those with disabilities?'"

For example, whether someone is discriminatory through speech, or by mere thought, the result is the same: isolation, ostracism, and loneliness.

This affects both parent and child.

P.S. Sometimes, I wish I could turn off my brain.

love
matt

"That’s why I think the campaign against the R-word is misguided and troubling and bound to fail.

Why?

Because it skirts the truth.
"

Likewise with many other 'unfortunate' words.

Two related words with which I am as intimately familiar as any able-bodied person can be are ‘crippled’ and ‘cripple’ – for my late mother was crippled her whole life (and her condition was intentionally made worse by “medical science” during the 1930s), and my family have always refused to sugar-coat the word.

A strange thing about those who freak-out most strongly about the use of 'unfortunate' words is that they'd frequently prefer that all persons so described be done away with. For their own good, of course.