Membership Has Its Privileges

Posted With Permission: An Email

Dear Dave,

I have read your blog daily for over a year now and have not left a comment, I believe this is called lurking. Several times I lectured myself to simply stop reading you because your views often upset me. You seem to have this idealized view of a disability community. I do not, or rather did not, believe such a community existed. I believed that a community of the disenfranchized was a laughable concept.

To answer the question forming in your head, no I do not have a disability, however my son does. When he was born with Down Syndrome, a fact I knew before his birth, I was determined to parent the strongest most powerful kid possible. I wanted him to have the self esteem he would need to live a fully integrated and fully assimilated life. Many years ago I had worked as an instructor in a sheltered industry and I came to believe that any system or structure that segregated or congregated those with disabilities was perpetuating the myth that disability was reason enough to separate someone from the pack.

I determined that this would not happen to my boy. I joined no support groups, recieved no special services, we went our way as a family. We fought the school for full integration and demanded that he be socialized with his peers. At first we met with brilliant success. He made friends at school and for the most part other parents were quite supportive. I held my breath each year as he advanced through the school system. I hoped and prayed that the friendships he had would last. They did not. By the time he was 16 he was completely out of the social mainstream. He never recieved invitations to parties, he never got calls from friends on the weekend. My heart raged at the injustice.

My parents, my father in particular, kept insisting that I involve my son in something like the Special Olympics so that he would have a social outlet. We had huge battles over this, I told him that organizations like the Special Olympics were outdated, they operated on the premise that people with disabilities had a social need for each other, a ridiculous idea.

This Christmas, my Dad came and brought me to the front room. I saw my son sitting alone. All his cousins and his brother were off playing with each other and he sat, like an unwrapped present, alone. I began to cry and my father held me and reassured me that he was loved and I was loved but it was time to think a little differently about how I was parenting him. I found a flyer by my bed that night, it was for a New Years dance for people with disabilities being held by a service organization.

My father and I brought my son to the dance. I'm crying right now as I write this because it was such a wonderful night. My son was immediately embraced by those hosting the dance and those attending the dance. He danced all night. By midnight he had the phone numbers of several other teens, by one he had a girlfriend. In one night he was transformed. On New Years Day he was on the phone 12 times with his girlfriend. I even found myself telling him to get off the phone, like I had with his older brother.

I've been thinking about all this over the last many hours since New Years. I think that I kept my son away from this community, and I admit it was a community event and he attended as a member of that community, because though I accepted his disability, I did not accept the disability of others. My prejudice almost kept him from experiencing a whole range of possible friendships. Without the strong encouragement of my father, my son would have spent a lonely New Years.

So on Monday I am going to be in contact with the local Down Syndrome Association, I am going to begin to think more broadly about what it means to parent a child with a disability. This letter to you is part of my new start for the year. I want to thank you for your unrelenting vision of a disability community. Even though I often scoffed at your writing and disagreed with your views, something aways drew me back to read Chewing the Fat every day. In a way I think you were getting me ready to hear what my father had to say.

I had a very Happy New Year, thank you.

Janet, mom to Cory.