Saturday, January 14, 2012

Memo to Doctors and Hospitals: You want to know how to ignite a firestorm for yourself like Children's Hospital of Philadelphia is experiencing? Three tips:
  1. Tell the parents of a child with special needs their child has no quality of life
  2. Tell the parents of a child with special needs that their child is not worthy of the same treatment others might receive
  3. When the parents advocate for the child, say "I have been warned about you," and suggest that fighting for this particular child is an offense to the system
There was a time when those parents would have no recourse but to go home and cry. They'd either go along or go someplace else, and either way, you'd be done with their dissent. But the Internet has changed all that. Blogs have changed all that. Facebook and Twitter and Google+ have most especially changed all that. Parents of children with special needs have reach. They have a way to tell their story where people will listen. They have networks through which to spread that story like crazy. And everybody who hears that story has a way to complain in public, with maximum visibility and extreme prejudice.

And they will, because you know what? Those three comments up there are like red capes to a bull. Every parent of a child with disabilities has heard those comments -- from a doctor, from a social worker, from an insurance drone, from a teacher, from a special-education administrator, from a stranger at the supermarket, from a close family member. We do not have to personally witness a particular incident to believe it is true -- we have a slideshow of that exact experience running in our brains, and we will bring all that emotion, all that righteous indignation, all that scathing anger down on your head. Maybe we weren't able to express it when it happened to us, but it will flow over you like lava.

For me, the slideshow starts with my daughter's birthparents who left her in a hospital in Russia and walked away. I've never understood how they could do that, but the information we received suggested heavily that they were persuaded she would have no "quality of life."

The slideshow clicks, and we're at my daughter's first neurology appointment in the US. The doctor looks at her orphanage records, listens to my answers to his questions, and then says, with contempt, "This child has cerebral palsy. Why did you adopt her?" Clearly, he didn't think much of her quality of life, nor of ours now that she was a part of it.

Click again, and we're at an IEP meeting in which I am struggling to get my daughter switched from self-contained to inclusion. Her speech therapist looks me in the eye and tells me I have to understand that this child will never have an independent life; if I want to be optimistic, I can dream of her one day sweeping the floor at McDonald's, but a sheltered workshop is a more likely reality. Hoping for more would only hurt her. (She's in college now, by the way, so you can see how well I listened.)

Click, click, click. Insult, rejection, slam. Cluelessness, callousness, cruelty. Any parent of a child with special needs has a lifetime of those moments branded onto their brain. We do not forget. And so, when a cause arises that we can add our voices to, oh my goodness will we do so. And you will say that it wasn't like that, and the parent isn't telling the whole story, and there were other reasons, and we weren't there. We will not care. We will remember all the times that we were there. And we will remember exactly what it was like.

And we will make sure that your quality of life takes a quick and precipitous drop.

For more on this story, see my blog post and the running list of posts on the topic I'm collecting there.


Liam said...

And every single grown-up special needs kid on the internet will join in too because we can remember too.

I've been called useless and broken and listened as people told my parents not to expect much from me - and I remember.

We've been that child and the anger and hurt that we maybe didn't feel at the time but feel now is coming your way, Children's Hospital of Philedelphia.

We are people too, we deserve to live.

Thank you to the internet and all the parents, carers, teachers, doctors and others who are stepping up for the rights of this generation of special needs kids.

Terri Mauro said...

Thanks so much for adding this, Liam. I thought about all those grown-up special needs kids while I was writing this, but theirs is not my experience to share. I'm so glad you did.

Nanette ~ A Mom Blog said...

I loved this article. I heard the your child will never to do this or never do that line too.

As if my child's life wasn't worth any effort. WRONG. He's an amazing child, he has hopes and dreams and one day I will sit in the audience and see him fulfill one of those dreams of graduating from college.

And I will share his story as it goes along via my blog, my place for my voice and his.