Saturday, January 03, 2009

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 We had huge battles over this, I told him that organizations like the Special Olympics were outdated, they operated on the premise that people with disabilities had a social need for each other, a ridiculous idea.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.


Heather said...

Hi Janet
Thank you for your post. Your love and courage are tangible.
Here's to a great year for Cory and for the rest of the family.
Kind regards

Belinda said...

Wow,Janet, what an amazingly committed mother you are to have fought for the ideals you had for Cory all those years. And what an amazingly humble woman you are to look at things a different way. We can be so committed to a philosophy we try to make people fit "it," rather than the other way around. I admire you so much for letting go of that and looking at the human being in front of you; wondering what he would choose and allowing him a choice.
At the same time, all those years of passionate integration will have benefited Cory so much. Most of all the love of such a committed mother behind him is a gift he has to cherish.

Anonymous said...

What a beautiful email.

lisa said...

I applaud your courage both to go your own way and to change when you saw the need to. It's always hard to be a mother. I hope your life and your son's continues to get better.


One Sick Mother said...

Hurray for epiphanies!

yanub said...

Thanks for sharing this letter, Dave. Janet, you know now what it means to be able to share with others with whom you never have to explain. You will get to meet so many parents who you will also not have to explain to--they already know and accept. What a wonderful way to begin the new year.

rickismom said...

Dear Janet,
I aplluad you for taking a hard step.
I also have my daughter in inclusion (Ricki has Down s. and is age 14), which I had to fight tooth and nail for,but she does have friends.
However, I always realized that someday her friends will go different paths, so for 3 years now I have had her attend a special-needs exercise group. And it is the highlight of her week.
Your child will always carry the benefit gained from inclusion. But I feel that at some point, we have to be sure that our children not be predujuced themselves against others with disabilities.
Making changes can be very hard. I think you can be very proud of yourself!

Heike said...

Yeah, Janet, finding the balance between inclusion and peer support is hard. And listening to your father when you're a grown-up (especially about something he's been going on about, and you feel strongly about) is hard. Congratulations to you for managing both. Your Cory is one lucky boy, and you are a mother I look up to. All the best for 2009!

shiva said...

I have a lot of thoughts about this, not all coherent and not all in agreement with each other.

But the main thing that comes to mind straight away is how deep-rooted this shows the disablism of non-disabled young people (particularly with regard to neuro/learning disability - as i know a lot of physically-impaired-but-neurotypical people who had as full a social circle as anyone in the "mainstream", and actually wanted to avoid being associated with other disabled people at that age) to be. Does this come from "the system", or is it something less easy to pin blame on, somrething deeply embedded in culture or even in neurotypical psychology?

I may actually respond to this on my own blog - it parallels my own life story in a lot of ways, and i'm really interested by that... tension or possibly even opposition between "full integration" and "disability community"...

I'd be interested to hear Cory's own words on his experiences...

Andrea Shettle, MSW said...

I applaud Janet's courage in taking this important step for Cory.

I also feel sad, though, for all the other children, teens, and adults who are deprived (and later learn to deprive themselves) of the richness that could be brought to their lives through knowing people who happen to share disabilities similar to theirs--IN ADDITION TO the non-disabled people they know.

This is seen all the time among deaf children whose parents not only forbid them to sign but also make a point of avoiding contact with other deaf children. Some parents seem to think that the minute they make a single deaf friend that their life becomes more "liimited." It doesn't. Any time we reject an entire sphere of possible contacts just because of who we are, we constrict our lives, and it can be as constricting in its own way to reject people based on having a disability as it would be if we were to reject them based on not having one.

Yes, a person with disabilities should never, ever, ever be pushed out of the mainstream. They should always have the right to go to the same schools as everyone else. And they should have the right to work in whatever jobs they're qualified for even if it means all or most of their co-workers, bosses, and, YES, the employees who report to them are non-disabled. But this does not mean that we cannot or should not have access to BOTH disabled AND non-disabled people in our lives. Because, you see, it NEVER HAS TO BE AN EITHER-OR CHOICE.

If we say that disabled children should not be associating with other disabled children, then what message does that send about whether ANY disabled child deserves to have friends? If another disabled child is not a "good enough" friend for your disabled child, then how can you convincingly argue that your disabled child is a "good enough" friend for a non-disabled child?

Speaking as a Deaf woman in a hearing world ... yes, I very much value the relationships I have with hearing people, including my hearing parents and hearing relatives and hearing spouse and all my many hearing co-workers. But I ALSO very much value the relationships I have had with deaf people, including some of my friends and former co-workers. And I very much resent any implication that I am "constricting" my life when I have, in fact, WIDENED it by welcoming BOTH Deaf AND hearing people into my life, as well as BOTH non-disabled people AND people with a very wide range of disabilities into my life.

E said...

First - Thanks Dave for sharing your blog space once again.

Second - Janet, thanks for letting Dave publish your e-mail, which you undoubtedly intended to be private, and which is now at least a bit more public. Congratulations on your journey, and thanks for remaining open-minded. Just goes to show that life is about learning - for everyone!

Third - well, I've written and deleted the rest of this response several times. There is something that I want to say, but can't seem to locate a "short" way to say it.
(Perhaps I have a disability which involves the inability to be succint when I am impassioned.)

Suffice it to say - nope....still can't get it down to a post of reasonable size.

Pardon my ramblings, but thanks again for sharing Janet. Hoping that both you and your son will have more smiles and less lonliness!

: )