Monday, March 09, 2015

Proudly, Outloudly

"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.


Susan said...

I totally agree. And even more so if it's a less visible disability. My family tree is overrun with kids and adults on the autism spectrum. If people don't know that, if there is no diagnostic "label", they are suddenly attached a whole new whack of labels: "spoiled", "bad behaviour", "poor parenting", "lack of structure at home", "irresponsible", you name it... The correct "label" brings sudden understanding. A child once seen as "spoiled and lacking parental discipline" is suddenly understood as someone who struggles with transitions and needs support through this. Or who are being assaulted by sensory input which their brain cannot process. Or they are being castigated for "not listening" when they are trying as hard as they can, but they just cannot process the words they are hearing - or communicate their fears or frustrations in any meaningful way. They are not the same as all the other kids who sail from "math class" to "gym" without thinking much about it. They're just not. Why would we make it harder for them by pretending that they are. And why would we expect the rest of the world to just "get" that??? That whole movement of "labels are for soup cans, not for people" has done a lot of damage to kids whose parents so fear the "label" that their kid goes on and on on being completely misunderstood and misjudged, struggling through school and through life. Should they have the same opportunities? Yes! But it needs to be clear what accommodations are needed and why. ..

CapriUni said...

I remember, around the eve of a Mother's Day, "long, long ago" (I must have been in my 20's), Mother and I were hanging out in the kitchen, discussing what life gifts we'd given to each other (she had never been the "Roses & Chocolates" sort, and she hated breakfast in bed).

I said that she'd given me the tools not to be intimidated by authority, and how to write a good Letter to the Editor.

She said that I got her into progressive politics, because when I was born, she was suddenly aware that "the world was far from a level playing field." So she became a local leader in the Environmental Movement and the Peace Movement, as well as fighting for Disability Rights. ... And our U.S. Congressmen straightened his tie when he saw her in the room ;-)

...Just one more anecdote to support your case.

Utter Randomness said...

We aren't all the same. When you say that we're all the same, you erase what is good about people, and what could be good about society if we let it. I am not ashamed of being different, not should I be. I'm frustrated by barriers I face because I'm different, and I deserve the same rights, the same chance. When we ignore difference, we erase parts of people that we do need to consider and CELEBRATE. Yes, I am a unique person, with a name, but I'm also a disabled person, a transgender person, a gay person, a person living below the poverty line. I'm just as much of a person as anyone else, but I have, and people before me have, had to fight for that recognition. Erasing difference erases that struggle, and frankly it's insulting. I'm good on my own merit, people are people no matter their differences, not because we're all the same. Recognize that people are different and celebrate those differences. Being different is not an embarrassment or a tragedy. It isn't something to be erased. Do not erase people so they fit into your box of what humans look like, rather, expand your box.

Andrea S. said...

Parents and kids should be able to talk about disability as one more natural part of human diversity and variation. Not a thing to be ashamed of, not a trivial meaningless thing, but also not the hugest part of their lives.

I have known hard of hearing people who were raised by parents who refused to explain to them that there were some things they just didn't hear. The parents meant well: they were afraid that knowing they had a disability would lead their children to underestimate themselves and not try as hard to succeed. They honestly believed they were "helping" their child by pretending to them that they were "just like" everyone else, that they had no disability. But, instead, it really harmed a lot of them. Even though parents insisted there was nothing "wrong" with them, they still noticed that there were so many occasions when they would mishear what people said, or times when they didn't even hear certain things at all. And because they didn't know why that was, they ended up blaming themselves for not "trying hard enough". So they would try harder, and the same problems kept happening. So eventually they ended up thinking they were stupid and lazy and gave up on themselves--the opposite of what their parents wanted. Only after they found out they were hard of hearing did they realize why they were "different" from other kids and learn to stop berating themselves and learn new ways of doing things to work around their limitations. That's what eventually enabled them to start succeeding at the things they were great at instead of being held back by limitations they couldn't see or understand.

I grew up not knowing I had attention deficit disorder. In my case, this wasn't because anyone hid the information from me, this was because when I was growing up people didn't usually look for ADD in girls, and especially did not look for the "distracted"/ "daydreaming" type of ADD --instead, they were only looking for the hyperactive type. So I wasn't diagnosed until my 20s. It was such a big relief when I was diagnosed and finally understood why certain things really were so much harder for me than for everyone else. It explained so much. And the diagnosis gave me the power to start figuring out work-around solutions instead of carrying on beating my head against a brick wall trying to do things I couldn't really do.

As a general rule, I feel it's best for kids to grow up with the knowledge that, yes, in certain ways they ARE different: They're a great awesome kid, and they're different in certain ways that make certain skills harder for them to master. And meanwhile there are these other things they CAN do, or things they do that make them kind and generous or otherwise great people.

And I think it's important for other people to hear these kinds of messages too. Yes, people stigmatize disability. That's exactly why they need to hear messages that directly challenge the idea that disability has to remain a stigmatizing thing. They need to hear people being described as people with disabilities--while also, in the same sentence, being described as people accomplishing things or just being great people that anyone should want to have in their lives.

Utter Randomness said...

To add to my earlier comment, I came across this quote from an author who takes pride in including diverse characters in her books.

"Why is diversity in books important? Diversity is not important. Diversity is reality. Human beings are not all the same. We come from many different places and have many different identities and experiences. Having only one kind of human being in the stories being told is flat-out bad storytelling. Diversity is reality. Let’s stop erasing that."
- Malinda Lo

I would argue that this is true of life as well.

clairesmum said...

Susan's comment made me think. I have a family member with (I think) autism..but the 'don't talk about troubles' message in the extended family mean that those of us who see her a few times a year don't know how to interact effectively with her, help her stay safe, do activities together that she will enjoy, etc. She strikes out when overwhelmed...meaning that her grandmother has been afraid to be alone with her since she was a toddler. Her younger sister has been taught how to hide safely in the closet when she needs to. Attempts to open some conversation were met with silence. I know her parents do not want her labeled...but labels get applied by those who don't understand. And I don't know what will happen when she ages out of the special education system.

Kristine said...

Every time these topics comes up in various forums, I feel like it's generally the same people playing the same roles... Parents and family members of the disabled fight for person-first language, for dropping the labels, for "just like everyone else," for "happens to use a wheelchair," and anything else they can think of that downplays the disability. But I feel like it's rare to see a disabled person on that side of the fence. We're generally speaking in favor of open dialogue about disability, disability pride, casual language that doesn't treat disability as more or less than what it is. Over and over again, we keep telling the world that we aren't ashamed of our disability, so maybe you (the world) could stop acting like we should be?

Not that all of us in the disabled community think alike. Not even close!! But it seems like the overwhelming message from the disabled doesn't match so many "advocates," and that's confusing to me. Shouldn't we be fighting for (mostly) the same things? And shouldn't the disabled be the experts within our own world?

Please note, none of that is a criticism to the parents who wrote to Dave. I assume they read this blog and communicate with Dave, with the purpose of better understanding, and I applaud and appreciate them making the effort to do so!

Anonymous said...

Sounds very much like colorblind racism. "I don't see race!" = I am treating you like an honorary white person--please don't break my illusion by acting/being different in a way I can no longer ignore. Wait, why are you not flattered by this?