Friday, May 30, 2014

Best Article On Disability By A Parent

Michael Bérubé, Al Jazeera America - May 25, 2014

(Via the Autistic Self Advocacy Network Tumblr blog).

This is the best first-person article on disability by a parent of a disabled child I have ever read. It is very personal and anecdotal, but also connects one young man’s experiences with larger policy issues. Mr. Bérubé keeps the article focused on his son, Jamie, while also expressing how he, Jamie's father feels.

The picture he paints isn’t entirely gloomy. Age 21 isn’t quite the “cliff” it is sometimes said to be for disabled kids. There are systems in place with decent and improving philosophies behind them. Yet, so many disabilities … especially it seems intellectual disabilities … seem still to still baffle us, probably unnecessarily.

This is personal journalism at its best.

Views from an Adult With Disabilities … Followup

Towards the end of my collaborative blog post with Kerith Stull of “Brielle and Me”, on advice for parents of kids with disabilities, Kerith notes that I didn’t say anything about, “therapy, IEPs, or equipment” – things we parents focus so much energy on in those early years.” A point well taken … and worthy of a followup!

I think I just figured that these were givens. As disability activist and artist Cheryl Green pointed out in a recent podcast, people are usually introduced to disability through the medical field. So, if anything, I worry that parents will see their children’s disabilities exclusively through the lens of medicine and rehabilitation, especially in the preschool years. Later on, parents learn more about some disabilities through the similar and parallel educational system, which can also come to dominate how they understand disability.

I certainly benefitted from my parents' pursuit of medical “corrections” that they hoped would give me more mobility and physical independence down the line. In my early years they committed me to fairly aggressive surgery and physical therapy. I did start walking when I was 3 years old, and both surgery and therapy tapered off a bit, replaced by less extensive ongoing PT and foot and ankle braces. I think I stopped having any formal physical therapy when I was around 13 years old.

I don’t know when or how my parents decided it was time to stop fixing me. Maybe they never really made a decision at all. Maybe my doctors just ran out of reasonable things they could do, and told my parents they were pretty much done. I don’t know what they would have done had my disabilities been different or more severe, but I suspect that they would never have let therapies, services, and gadgets dominate our family. They just weren’t like that.

One thing I am very grateful for is that my parents never let me think that I had to “work hard” and suffer through more and more hardships in order to achieve their goals for me. I know so many disabled adults who decades after their childhoods have simmering resentments and complicated relationships family because they got the message … intentionally or not … that they had to work harder, always harder, and that if they didn’t, they were giving up. Guilt trips happen in the nicest families, and disability is a fertile ground for them. My therapy was hard and painful, but I never felt that success or failure had anything to do we my character.

Maybe that’s an extra piece of advice for parents. Don’t let your child confuse therapy and rehabilitation “success” with their self-worth. No abstract performance goal is worth it if your child ends up feeling judged and persecuted by his or her own family.