It Takes My Breath Away

It happened twice just this week.

The mere act of typing this right now has made my heart race, my breathing shallow. I feel slightly dizzy and a little sick.

It is anxiety, straight up, Shaking, dry mouth, headache coming on...

And it happens every time. And it has happened every time, since I was little girl.

I heard two adults use it this week.

The R word.

I heard 'retardo' twice, then 'isn't that retarded' once.

I am shaking so hard I can hardly type.

What would you do if someone used the 'n' word in casual conversation? Do you respond? How do you respond? I can honestly say I have not heard that word used in person but one time in the last 30 years. My eyes got wide. I shied away. I said nothing. Then the enormous burden of guilt and shame descended.

It is the same when I hear someone use retarded or worse, 'tard, retard, retardo (new one, how is there a new one?).

I want to say something but I am usually far too anxious to do it.

If someone is in medicine or studying medicine I generally say something. I announce to my college students how I feel about the word. I want them to think about the use of that word and make their own decision.

But when a friend, or a friend's child, or a family member uses it, I generally say nothing. I just don't want to see them again.

Does shying away with my feelings help anyone?

My brother is retarded. My court paperwork assigning me as his guardian states that he is "an incapacitated person due to severe mental retardation."

He cannot communicate. He cannot say "what do you mean by that," or "that hurts my feelings," or "please don't say that."

But neither can I.

And I feel heavy with shame and anxiety about it.

World Autism Awareness Day

This day 2 April is World Autism Awareness Day. http://www.worldautismawarenessday.org/site/c.egLMI2ODKpF/b.3917065/k.BE58/Home.htm

Because autism is so prevalent, many of you are aware of it already, daily, often painfully. Many of you are unaware of the quiet struggle that this and other related challenges bring.

My sweet brother Kerry. Once diagnosed with severe mental retardation, at a certain point his diagnosis changed to autism. He doesn't speak. He has never said my name. He doesn't acknowledge hello or good bye. He lives in a community with others with severe disabilities. There is so much he cannot do.

What he can do is enjoy a meal. He loves meals and sweets. He can enjoy his rest. He dutifully puts on pajamas and sleeps with reckless abandon. He has a job and works 32 hours per week at a recycling plant because he is able to focus for long periods on repetitive tasks. This trait I definitely share with him. He uses the money he earns to buy Diet Coke which he slurps with joy.

He does not complain about work. He does not complain about his hair. He does not complain about his weight. He doesn't care what car you drive, where you live or that his shirt says "Polo." He does not know there are people who receive millions of dollars to stay at a job they are doing poorly. He does not know the hunger and rapes and abuse throughout this world. He does not know the oceans are full of plastic that we keep throwing away like it doesn't matter.

He doesn't know people recklessly use the word "retarded" to describe stupid or ugly. But I do. He cannot say "don't use the "r" word. But I can.

Here is to Kerry and a brain he could not use at his own will. And to you who can.