Sarah Palin's Speech about "Special Needs"

Forgive me folks I am so far behind--there is an actual traffic jam of posts waiting to be written in my head... I am starting with this one because I commented a few times about the McCain-Palin Campaign's lack of a disability policy and now they have one.

A week ago Friday Sarah Palin spoke in Pittsburgh and outlined some actions that they will take regarding disability if elected. I heard that they also put their disability platform on their website, but haven't been able to find it.

I was very glad to hear Gov. Palin's remarks because to me it means that people with disabilities are being recognized as the viable minority they are. And I have been beside myself watching a national platform saying "special needs" every 3 words yet offering nothing... (I might have mentioned this before.)

Gov. Palin states they will support school vouchers/choice for children with disabilities and special education money will follow the child in states where state funds are portable. They will fully fund IDEA by re-prioritizing earmarks, strengthen the NIH for long term cures and to get better information out to parents and for early diagnosis. For teens and young adults they will extend the support of IDEA and rehab act extending to schools and colleges. Requiring results from education--freedom to work and live independently. They also want a welcoming culture.

She spoke about Special Needs Trusts and worries that Obama's tax increase will tax them. And advocated for more private-public partnerships.

Well, all that is left is whether you agree or disagree with these things. I have my concerns.

I don't agree with vouchers--private schools show very little inclination to accept kids with disabilities--the kids left in public schools will be the kids with disabilities and other needs,reversing all the benefits that inclusive education has wrought.

I worry about fully funding IDEA as an exception to their campaign's non-funding principles. In Obama's campaign disability issues are covered in the principle that everyone gets what they need. In McCain's it appears that "special needs children" will be given what other people need--this does not create a welcoming situation, it creates a scapegoat.

Further than this, if the Obama campaign intends to tax people making more than $200,000 how does this affect Special Needs Trusts at all? I don't know ANY folks who have so much in their trust that they are making >$200,000/year. None. But if they are, I say tax them!

And I know others love the phrase, but I hate the term "special needs." My husband needs a working car, 2 cell phones, a pretty impressive computer and strong coffee to be successful in what he does. My neighbor needs an electric wheelchair. Why are some things just needs and some things "special" needs???? Don't get it, don't like it. The principle exception does not work for me--it creates another "not us." Which to my way of thinking is ALWAYS dangerous.

But that's just me--go vote!

Disability Blog Carnival #47 Is Up

This is the 47th Disability Blog Carnival and it is posted over at Day in Washington. The theme is Policy. As always the carnival is a gathering of interesting perspectives. Go read!

The next Disability Blog Carnival will be posted HERE on October 23rd. The theme will be Disability: Capacities and Capabilities.

There are many things I have learned about and have learned to do because of my experience with disability that I might not have learned otherwise. I think this is true of many of us. I think folks inside and outside of the disability community rarely recognize or celebrate the skills we have gained.

You can send your posts through the Disability Blog Carnival site (which, sadly, has inaccessible CAPTCHA) or you can leave the link in a comment on this post, or in a comment over on Disability Studies, Temple U. Or you can just put Disability Blog Studies in the title of your post and Fearless Leader Penny will usually be able to find them.

Kennedy-Brownback, Disability and Degree of Difficulty

The Kennedy-Brownback Bill was passed by Congress this past week. This bill requires accurate, up-to-date information about disabilities be given to parents when they receive a pre-natal disability diagnosis. I am glad to hear Congress say that unbiased information matters.

As a nurse, I often find the medical responses to disability the hardest to stomach. Folks in my field should lead the way in ‘knowing better than that.’ It is just mortifying how often they don’t.

A couple of weeks ago it was an MD from Canada talking negatively about Down syndrome.

Then this was in an article in The Chicago Tribune this week:

“Dr. Jacques Abramowicz, co-director of fetal and neonatal medicine at Rush University Medical Center, cautioned against providing a picture of the disorder that is "too rosy."

"Whenever something like this (Down syndrome) is in the media, there is the tendency to make it appear much more beautiful than it is in reality," Abramowicz said.

He says he doesn't tell women what to do, but he stressed that it is a doctor's responsibility to convey the serious health problems that accompany Down syndrome, including higher risks for leukemia, thyroid problems and, later in life, dementia.

"It is extremely difficult to have a baby with Down syndrome," he said.”

Well, this sticks in my craw.

I hope he feels equally responsible to tell parents that people with Down syndrome have a decreased risk of solid tissue tumors like breast cancer, and that ‘thyroid problems’ are experienced by a huge number of people without Down syndrome also (women over 40, for example) and they’re usually pretty easily treated. And I hope that he is sharing that the information about dementia is a risk factor, not a foregone conclusion.

(Like maternal age increases the risk of Down syndrome—yet 60% of all babies with Down syndrome are born to mothers under 30 years old. Maternal age is a risk factor, not an absolute.

The same is true of dementia. There is a higher risk of dementia, but most people with Down syndrome don’t show signs of dementia.

A physician in my area that works with adults with developmental disabilities says that most aging people with Down syndrome who are given a dementia label are misdiagnosed. He evaluates the folks that come to him and “cures” most of their dementia by treating their underlying hypothyroidism, depression, sensory deficits and other issues. He feels that most folks jump to a dementia diagnosis wrongly, and that this is inflating the current statistics.)

Is this doctor telling parents that the existence of Down syndrome is teaching researchers a great deal about Alzheimer’s disease? And that in 40-50 years, when their kids are getting up in age, there will likely be new information and new treatments available for dementia—for all of us?

Is he telling his patients about the advances in medicine, in education and in society that are making life with Down syndrome better than it has ever been? Is he telling them that quality of life of even the ‘lowest functioning’ individuals is better than it has ever been—they live home, they go to school and interact in their communities like never before? Is he telling them that the next 30 years are likely to bring about even more advances?

The studies say that few physicians are. Informed choice requires up-to-date information and includes accurate information about positives as well as accurate information about difficulties.

I hope that physicians aren’t sharing this information because they don’t know it.

Now, let's talk about "difficulty."

The doctor said, “It is very difficult to have a child with Down syndrome.”

These statements always bug me.

First, I always want to ask how he would know that—is he surmising? He’s a neonatologist—has he seen a lot of families raise their kids with Down syndrome? Maybe he has, but if his experience is just with newborns—newborns under duress—is it possible he’s extrapolating a bit? How far from infancy are these extrapolations accurate, do you think?

Then, I wonder, are professionals really implying that if you don’t have a child with Down syndrome your life as a parent will be easy??

Really?

Not all kids with Down syndrome are that difficult.

And lots of kids without any diagnosis at all are incredibly difficult to parent. All the bad things you read about in the papers are perpetrated by people. All of those people have parents, and few of those people have a diagnosis of Down syndrome.

I’m just sayin’…

Beyond this, many things in life are difficult. Difficulty gets presented like an important reason to avoid something, yet people routinely choose to do really difficult things and think they are better off because they do.

Running marathons, for example, (finally, a reason for that picture!) is difficult. You have to run—a lot. You have to train incessantly—carving time out of your busy life. You have to sweat. You wear out shoes. You risk injury. Even without injury, you tolerate a ton of discomfort (some might call it pain) as well as boredom, exhaustion, bad smells and bad weather.

It is stressful, even grueling at times. Yet people do it.

There are lots of stories after every marathon about people who hurt themselves and keep running or who stay in the race even though they will finish hours after everyone else has gone home. Yet marathon-running is a respected choice.

Becoming a physician is also difficult. One must graduate from high school with excellent grades, graduate from college with excellent grades, graduate from medical school with excellent grades, be a resident forever—balancing hard work, terrible hours, and classes where you must have—of course—excellent grades.

It’s stressful, even grueling at times. Yet people do it.

They juggle young families so they can finish. They spend every cent their parents ever made and get loans up to their eyeballs. They give up sleep and hobbies and reading the newspaper—for years. It’s a struggle—a highly respected struggle.

People willingly take on huge challenges and would fight you tooth and nail if you tried to stop them.

Why???

Because it’s worth it.

The reward is worth the effort. In fact, the struggles make the rewards worth having. Rising above the odds and mastering the challenges is empowering—and fun. It makes us SOMEBODY in our own eyes—and sometimes in others’ as well.

So we choose challenges for ourselves and recommend against them for others? This is disingenuous at best—elitist at worst.

And when we talk to someone about what it’s like to be a runner or a doctor what do they say? If they tell us they love it because of the rewards they are experiencing (good health, winning, prestige, making a difference, saving lives, etc) do we accuse them of painting a rosier picture than they should?

Do we caution others not to listen because they are making running or medicine appear more beautiful than it is?

Um, no. We never do this. Not ever.

So, why would we respond to parents of kids with disabilities this way?

I wonder….

For my other posts about Down syndrome click here.

Photograph courtesy of Philip Greenspun