“She has a baby with Down’s Syndrome.”
The words spread through the special needs community like wildfire. And for a few, brief hours, I was optimistic and eager. Here she was, she was like me! She had sat across the desk from the doctors, received similar news, and anguished over those same thoughts. Do you remember her speech at the convention? The one where she said we would “have a friend and an advocate in the White House?” This was exciting.
If you don’t know whom I am talking about, it’s Sarah Palin and the summer of 2008. It’s hard to think back to a time when we actually didn’t know much about her, isn’t it? I was very much a newbie in the special needs world, trying to find my place, and discovering that I would be represented on the national stage…….well, it was very exciting.
As reports emerged, she did not appear to be a systems advocate for the special needs community. I was crushed. I vote according to my issues and priorities, not by party and I would have voted for her if she had made these her priorities. Like many parents of children with special needs, two very important issues to me are education and health care. And, like many other parents and advocates, I feel like funding the special needs community is often marginalized. Most people and politicians, when asked, will tell you that they support this effort. But once they see the size and scope of the problem and how much funding is actually needed, they cower.
So now here we go again, Rick Santorum. He also has a child with a chromosome disorder, and has used her as the focus of one of his recent campaign ads.
This time, I don’t have any hope or eagerness about a special needs parent in the White House. I know Rick Santorum, as I am a Pennsylvania resident. He also is not known as“disability friendly.” Let me add, in full disclosure, that I’ve loathed Rick Santorum (politically) for years. His position and statements on everything from homosexuality to health care is deplorable. But you’d think that we’d at least be able to agree on special education and the needs of the handicapped.
Both Santorum and Palin use their special needs child to promote a not-so-subtle message of piousness and the pro-life movement. That they chose not to abort their special needs child (which by his own words, RS has stated they didn’t get their diagnosis until she was five days old) is something that we should honor them for. Instead of showing us warm, fuzzy videos about how wonderful he is for not aborting their daughter, how about working to make life easier on those who have a disabled child?
There’s a story going viral about a little girl in Philadelphia that is being denied a kidney transplant because she is intellectually disabled. Whether that is the entire story or not remains to be seen, but if it is or if it isn’t, doesn’t really matter. Because do any internet search on “mentally retarded and transplants,” and you’ll find that this is routinely used as criteria for determining eligibility.
Why isn’t Rick Santorum angry about this issue? Surely as a parent of a child with Trisomy 18, he knows how that diagnosis is often used to ration care, given the prognosis. He has been told that his child’s life doesn’t matter. Instead of Ms. Palin talking about the choices she made, why didn’t she work harder to give us all more educational choices? 9% of the special needs population completes college. Two-thirds of them are chronically unemployed and 40% of our special needs population lives in poverty. Is this the vision they have for the special needs community? Don’t they want to make this better?
The argument could be made that socialized medicine and education are actually pro-life services. Quality levels and availability of all special needs programs, services and equipment can vary tremendously from state to state or county to county. With strong institutional supports in place (which are really only affordable to a government and some private charities) people who get such a diagnosis in utero might be more willing to take on the extra responsibility of a disabled child. Rick Santorum and Sarah Palin know the challenges involved in raising children like this. So why aren’t they joining the movement?