We’re involved in two types of support groups right now. Ones for my husband and ones for my son. I’ve noticed the same thing in both: there is a schism in both communities. Do we fight it and try to fix it? Or do we accept it and embrace the difference?
I’ve known about this schism since I first met my husband. He has a degenerative eye disease and is legally blind, carries a cane, yet can see enough to make eye contact a see a bit. He took me to RP support group meetings and supported the Foundation Fighting Blindness. They raise money for research to cure or delay diseases that cause blindness.
I learned that it was a totally different approach than the National Federation of the Blind because it’s serving a different population. The FFB is serving people who are losing their vision through degenerative disease. The NFB is serving all blind people, many who were blind from birth, some who are losing their vision. From that perspective blindness isn’t something to fight, it is something to adapt to. They raise money to send people to the annual conference and help members of their support group.
I was kind of surprised to see that there is a similar schism in the Autism community. I watched this interesting video on indiegogo.com called Citizen Autistic, it basically puts forth that not all autistic people need an organization like Autism Speaks to speak for them, they can speak for themselves just fine. They point out that a large percentage of monies donated doesn’t actually make it out to the community, and that there are no people with autism on the board of Autism Speaks.
There’s a group of people who feel that neurodiversity and acceptance is the answer to autism. Not defeating it, not fighting it. This article, What is Neurodiversity? sums it up nicely for me, “The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood.”
For now, we’re walking the line between the two sides. Interventions and therapies for my son, but learning to trust his own sort of order. And for my husband it means, networking with NFB Support groups and learning the Apple iOS from people who are totally blind, so he can learn to use it as adaptive equipment for what vision he still has.
If there were a cure for my husband’s vision loss, he would do it in a heartbeat. If I could help my son talk better and understand better, I would do it and be really happy about it. Then again, everyone is different and I wouldn’t want to make them feel less like themselves. I wouldn’t want my son to suddenly be perfectly normal (whatever that is) if he lost aspects of his personality that make him lovable or brilliant.