My Husband The Hemorrhoid

Some years ago, Hubby and I attended a PEP meeting. PEP (Parents Encouraging Parents) is a wonderful support resource for families with children who have disabilities. After the program, there was juice and cookies for all, and lots of mingling so that we parents could meet and hopefully find our soul mates in support.

With kids in tow, we worked the room with the other families, thanking the speakers, making comments on the points brought up and introducing ourselves.

We met Marsha (not her real name), who enthusiastically shook our hands.

"And this is my son, Jason (not his real name either). He's ADD!!" ADD is Attention Deficit Disorder for those who've crashed on a deserted island with only a soccer ball named Wilson for company and haven't been in the loop for the last couple of decades.

This was one of those supremely awkward moments I think we all experience at least once in our lives. When it happened to me, all I could do was gape. In hindsight, I've played this scenario over and over in my mind, trying to perfect the ideal snappy answer. Now I stalk through life just hunting for potential Marshas to cross my path. I'm loaded for bear.

When did it become acceptable to introduce our children by their physical and/or mental capabilities? When did it become the norm to define our children by a condition? I can't think of any moment in a polite and civilized society where we would treat another adult this way.

"Hi, I'd like you to meet my friend Betty. She's a toe fungus!" Blech.

Our youngest son has a lot of wonderful and unique qualities. He has sparkly blue eyes, an extremely literal and quirky sense of humor, and has an extensive memory for even the smallest of details. He likes mashed potatoes. He doesn't like bare feet, even his own. He also has autism. It doesn't define him as a person. It's not who he IS. It's something he HAS.

Now don't get me wrong. Obviously everyone is entitled to define themselves in any way they wish. I just can't help but get my knickers in a knot when one person uses these terms to refer to another. Unfortunately, parents seem to be the worst offenders. And it makes me wonder why.

Kathie Snow, a parent, speaker, and activist writes in her excellent article People First Language:

'Many parents say, "I have a child with special needs." This term generates pity, as demonstrated by the, "Oh, I'm so sorry," response, a sad look, or a sympathetic pat on the arm. (Gag!) A person's needs aren't "special" to him---they're ordinary. I've never met an adult with a disability who wanted to be called "special." Let's learn from those with real experience, and stop inflicting this pity-laden descriptor on others.'

Of course, the people who care for our children should be aware of what their necessities are. Teachers, doctors, therapists, family members, day-care providers, etc, are definitely on the "need to know" list. The strangers standing at the grocery check-out curiously watching your kid count the feet of sockless people are not.

Ms. Snow also writes:

'Besides, the diagnosis is nobody's business! Have individuals with disabilities given us permission to share their personal information with others? If not, how dare we violate their trust!'

Have we come to the point as parents where we no longer see our children as individual people, but only as extensions of ourselves? Would we treat another person outside our family with the same kind of disrespect? It's a tough question.

So I've decided that the next time a potential Marsha introduces me to her child and says "He's ADD/Autistic/Mentally Retarded", etc, I'm going to shake her hand.

Then I'm going to turn to my much beloved and beleaguered spouse and say, "I'd like you to meet my husband. He's a hemorrhoid."

I mean you've got to make a stand somewhere.