Thursday, January 24, 2013

The Word That Dares Not Speak Its Name

I apologize to my readers.  I have let fear of not being "politically correct" affect some of my blog posting.  There is a word I must use, and yet, I fear to, because of the power it had over so many people.  That power must be destroyed.  Many have been working towards its destruction, and I must "get real" (as a blogger named Michelle who co-runs the Ultimate Blog Challenge tells us) and add my efforts.

I rarely write about one person who is important in my life.  That man is one of my brother in laws.  He is in his 50's, yet has been almost invisible to most people for much of his life.

He has a developmental disability called autism.

Back when he was born, the term "autism" was unknown to most people.  I know that I had never heard of it although one of my favorite aunts, unknown to me, acted as an advocate for another relative who had a child with autism. I never knew that, in fact, until the aunt was eulogized at her funeral.

Meanwhile, I never dreamed I would marry a man who had a brother with a developmental disability.  But I did. I learned, later on, that there were siblings who never married.  Either prospective mates were scared off, or, worse, the sibs were afraid to give birth to a child with the same disability.  Sadly, enough of those feelings still exist.

When my brother in law was young, there was a place in New York State called Willowbrook.   To anyone of my generation who grew up in the New York metropolitan area, the mention of Willowbrook brings chills.  Feelings of disgust.

Willowbrook was a "state school" for people with mental disabilities.

No, that isn't quite right.  I am going to take a deep breath and type in my blog, a word so loathsome, that many do not dare utter it today.  But the word was common in 1972, the year a local WABC-TV reporter by the name of Geraldo Rivera did an expose on the place called Willowbrook.  It was a common word when I grew up.  It was the word I was taught, by a type of societal osmosis, to use to describe people like my brother in law.

The word was "retarded".

Willowbrook was a place where "retarded" people lived, and, basically, underwent state-sanctioned torture.  There is no better way to speak this terrible truth.

Thank the good Lord that my brother in law was not sent there.  Did it ever cross my in laws' mind?  I tend to doubt it.

But my brother in law did receive services from an organization called the "Association for Retarded Children" (later, the "Association for Retarded Citizens". And the state agency that served people like my brother in law?  Until a handful of years ago, it was called OMRDD, or the Office of Mental Retardation and Developmental Disabilities.

No more, no more.  The name "Association for Retarded Citizens" was abandoned years ago. OMRDD is now OPWDD, the Office for People with Developmental Disabilities.  Amazingly, that name change happened less than three years ago.

A society that allowed those who are intellectually challenged to be called "retarded" also permitted a place like Willowbrook to exist.  In fact, Willowbrook existed until 1987.  Many of its former residents are in their 50's and 60's now.  Parts of their lives were stolen from them.

But the word "retard" lives on.  Young people still insult and bully others with that term.  And yes, there are those who will condemn me for even daring to use the word at all.  Yes, its use is that charged with negative meaning. But I must be real, and I must use that word.

My brother in law is not "a retard". In fact, he is far from stupid.  I have a feeling he knows more than any of us will ever realize.  Part of his disability is his difficulty in communicating with others.

I bet he knows he does not want to go back to the "good old days", the days of "retards" and Willowbrook.

We must go forward in our understanding, forward in our acceptance of those with autism and others different from us.  We must never hide them away again.  They are a part of us.

And we must make sure a place like Willowbrook never, ever exists again.


  1. What a heartwarming story. I had a cousin who lived across the street from me. She was my dad's age and was severely mentally disabled. She had a very high fever as a child and that caused her disability. Everyone was afraid of her, but for some reason I loved to be around her as a child. I would go to my great aunt's house (her mom) and she would rock me like a baby. I was about 8 years old at the time. I remember that my great uncle would take her where ever he went. I can appreciate that so much more as an adult, because she would have been around 86 years old today. And at the time that I was growing up, people with mental disabilities were not to be seen in public. But my uncle didn't let that deter him. Kudos to you and your family. I imagine that your brother in law gives you much joy and love. Thanks for sharing.

    1. Thank you for sharing that memory. And you are right - people with mental disabilities were hidden away by their families -- something my in laws never did. In fact, my brother in law will be at a great aunt's 101st birthday party tomorrow.

  2. This reminds of the fact that I am "special" (they kept bouncing me from the "retard" class to the "genius" class and back again) because ADHD is a modern term, and did not exist when I was in school. (My speech problem did not help either.) So I feel for you and yours.

    1. Sadly, a lot of students have been placed in "special" classes for no good reason other than the fact that they did not fit in the round hole of how modern education is conducted. That is a subject for another blog post. Or two, or three.

  3. Totally agree! Your brother-in-law is so lucky to have you. Dropping by from UBC.

    1. Thank you for dropping by. He is going to have interesting and stressful times ahead of him as the mother he's lived with all his life ages and eventually, as she must, leave us.

  4. Ah. Autism. There is nothing which makes my blood boil more than the callous attitude (callous as in cowardly) that almost every country in the world adopts and has always adopted vis-à-vis autists. From Britain to France to just about every other western country, without mentioning the rest of the world, and god knows what happens there, autists and autism are brushed under the carpet. And the tragedy of it all is that unless you are a hermit you almost certainly know at least one person with one kind, or degree, of autism or another. And many people are mild autists without even being diagnosed.

    Here in France things are so bad (this is a country in which mental health issues are particularly cruelly dealt with, and unfortunately there is still a tendency to consider autism as mental illness bekieve it or not) that autists' defence groups have had to undertake a particularly arduous legal route - I won't go into the details here but it involves collecting half a million signatures - in to try and force the government to address the issue correctly.

    Best of luck to your brother-in-law and all autists in their struggle to be treated as equal citizens.

    (p.s. Concerning 'political correction', the day I'm politically correct is the day I'll know that I have given in to intellectual laziness and not making waves. And that is NOT in my character. Long live political incorrection! :)

    1. Your comment started my day off right, like a good cup of coffee. You are right about how many people are on "the Spectrum" (as we call it here in the States) and many of them have talents important to our society. Thank you for sharing what is going on in France.

  5. Oh dear. I'm about to enter dangerous territory. As a mother of an autistic child perhaps I feel I'm on a little firmer ground here to say the following but.... First of all I am NOT an advocate of political correctness. I, for one, do not have a problem with the term "mental retardation". To retard means to slow down. On vehicles timing is retard to alter how the engine runs. Retard is a legit word. No matter what the term is "retarded", "special needs", etc. there will always be bullies and playground taunters. I am not condoning taunting or any ill treatment of vulnerable people just that sometimes things just are what they are. Ain't no sugar coating it.

  6. Personally, I would not condemn any blogger for using the word "retarded" even if I don't like the term myself. It was used for too many years, and is a part of the vocabulary of those, like me, who are in their 40's, 50's and 60's. Unfortunately, there are people who will jump all over any blogger who dares to use the "R word", or certain other terms (such as describing a person with autism as "autistic"). It has actually discouraged me from starting a blog about life with my brother in law, I'm sad to say. I need to grow a thicker skin.


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