"My son has a name, not a label."
Many parents wrote me, personally, about the post I wrote called I Am It, they were, to a one, concerned about what I was saying and all spoke of their fight to have their child referred to as a full human being, not as someone who wears a label. They thought I was challenging that point of view and wanted me to explain. There weren't floods of these emails, but there were several. I asked each of them if I could respond in a post on my blog. I told them that I knew that what I wrote might cause such a reaction and hoped that dialogue and discussion could result in the place of argument and animosity. They all agreed, both with a public response to their private question and with the need for dialogue.
Here's what I'd like to say to these parents and others who may be reading:
Like it or not your child has been born into a life of advocacy. By the sheer nature of their disability and their difference and by the circumstance of the timing of their arrival - they will live a life of cutting new paths, challenging preconceptions and prejudices and opening the way for others who follow. We are still into the generation of children who are growing up in homes and schools rather than institutions and workshops. We are still fighting with schools, with neighbourhoods, with communities for the right for belonging, even while acknowledging that welcome still may be a generation or two away. The fight is not yet won and the ground gained is not yet firmly ours.
Your child will be going into schools, going into community swimming pools, going to community events. This is normal. What's not normal are schools, swimming pools and community events being welcoming places for kids with differences and disabilities. There are many who are not yet comfortable with your child's difference and who will only see their difference. You will want to react by saying something like, "My child is just like any other child." But that's not true is it? Your child walks a different, and harder path. They do so because of their disability, true, but the real issue is the social status they hold as a disabled person. The real issue is that society values disability differently and dismissively in relation to themselves.
Saying something like, "My child has Down Syndrome AND has the same rights as everyone else," is, to me, a more powerful and more challenging statement." To say "My child is just like any other child," leaves people believing that you haven't faced up to your child's difference, they dismiss your point - even though your point is, for the most part, valid. Proudly, outloudly, challenging people and preconceptions and prejudices goes a lot further.
Too, if you discuss your child's accomplishments with another mother or father who don't know your child, and you don't mention your child's disability in relationship to that accomplishment, the chance for education is lost. Telling someone that your spunky kid beat out the other kids at school in a race and adding, "her wheelchair was flying," you've just done education and advocacy. That person may one day have a child with a disability. If you mention that your child has Down Syndrome and speak happily about their life and their accomplishment - your listener one day may be making a decision as to keeping a child with Down Syndrome. Advocacy. Advocacy. Advocacy.
You and your child, both, will cut many new paths on your journeys. Your child will be doing things and going places where they may be the first or the 50th kid with a disability to go there, be there, do there. First or 50th, it's still advocacy until the number doesn't matter any more, until they are expected, not counted. You will be butting heads with principals, and administrators, and, god forbid, experts, for many years to come. Your child was born into advocacy true, but at their birth, so were you.
Finally, I have worked with adults with intellectual disabilities who never heard their parents mention their disabilities. They weren't talked to about it. When they asked, they were told, 'you are just like everyone else.' They knew this wasn't true. What they didn't know was why their parents never spoke of their difference in any real or meaningful way to them. To a one they assume that this means that what they have is so bad, and so wrong, that their parents couldn't even mention it. They grew up feeling shame. The tragedy is that their parents were aiming for everything but that! Hearing your parent boast about you AS their child and AS a person with a disability is a very big deal.
The first time I saw a woman holding a sign that said, "I love my gay son." I had to pull my car over and park so I could weep freely. I'd never seen that sentiment publicly stated. Seeing,"I love my son," wouldn't have moved me other than to think; "That is so sweet."
So this is what I think.
I know many will disagree.
And, here's the thing, I'd love to talk about it.