I'm thinking about the years I spent as a consultant. When I was first hired as a behaviour therapist by Behaviour Management Services, I was quite comfortable in my role when going into workshops, group homes and classrooms. After having graduated from the University of Victoria, I knew I wanted to provide behavioural consultation but I didn't feel like I had anything more than book learnin' to offer. So I spent a few years working direct care, first in an institution, then in a classroom, then in a day programme, finally in a group home. It was a wonderful experience and got me sort of addicted to providing direct service. (Though I do this much less, I still, regularly through the year teach classes to people with disabilities and provide direct clinical consultation.)
What I was less comfortable with was my work with families. The first time I walked into a family home to meet with a mother struggling to provide support to a child with a disability who got perfect 10's, though 7 from the Russian judge, in temper tantrumming, I felt inadequate. Who was I to give any parent advice? But I bucked up and did my job, listened to parental concerns, looked at the environment, made recommendations, did follow ups, wrote reports. I got kind of good at it. And. AND. I came to really respect the parents I met, the struggles they had and the lives they lived.
The biggest eye openner to me was the fact that these parents lived, for the most part, typical lives. The child with a disability added a new dimension to their lives, changed the way they viewed the world, made them organize themselves differently, enriched their lives in some ways, impoverished their lives in others. Kind of like what happens when a child, of any type, enters your life. After awhile, the sheer ordinariness of their lives impressed me, even though they developed extraordinary skill. Moms could ready three kids in the morning, do battle with a transportation company, send information for a teacher to not read, get out the door and to work on time. Amazing.
Every parent I met, even those with kids who's screaming had me rethinking the edict forbidding the use of duct tape in behavioural programming, loved their kids. Some were beaten down by systems and supports, by schools and specialists. Some coped well. Some coped poorly. Some cried more than they laughed. Some relished in conflict. They were as varied as they were typical.
All this is to say that I've been horrified at the conversations I have heard this week, often from people in the service of those with disabilites, about Governor Palin and her run for Vice Presidency. Now being a Canadian, I admit to looking at Republicans with a kind of morbid curiosity - people really believe those things? But, the comments made suggesting that she shouldn't run because she has a child with Down Syndrome. That 'these' children require more care, more sacrifice ... that good mother's wouldn't do that to their children.
I say, "What!?!"
This is not what I've seen when meeting parents. This is not the general impression that I've gotten. Who the hell has any right to decide what Governor Palin and her family takes on ... besides Governor Palin and her family? Are people suggesting that if a woman wants a career she shouldn't be a mom? Or just not a mom to a kid with a disability.
These are dangerous waters to be wading into. Suggesting that children with disabilities take opportunities away, reduce your ability to dream big, encumber your asperations. Dangerous, dangerous waters.
I say this.
Not your child.
Not your family.
Not your decision.