Becky Blitch, a 28-year-old woman living with Spinal Muscular Atrophy Type 2, explains why she isn’t so sure about McCain/Palin’s support for those living with disabilities…
Much has been made of Sarah Palin’s “special needs child” over the past week. Today’s LA Times features a two-page article declaring that “Trig Palin’s story is safe ground for the Republican ticket”. The article reviews Palin’s record on disability in her short tenure as governor of Alaska, attempting to make the case that a McCain-Palin administration would be proactive on disability issues.
Palin herself started the meme by declaring in her convention address, “To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House.”
The LA Times relays the reaction of a suburban dad of a teenage daughter with Down’s Syndrome: “I clapped as loud as I could,” he said. “We need a friend in the White House.”
I write today to offer another viewpoint on Sarah Palin’s much-touted advocacy creds. To be blunt: it’s bullshit. People with disabilities, their families, and all equality-minded Americans are being mislead about which ticket is truly progressive on disability rights issues. Worse, Palin is exploiting her own son in the effort.
Before going any further, allow me to step back and establish my credentials. I’m a 28-year-old woman living with Spinal Muscular Atrophy Type 2, a neuromuscular disease that was diagnosed just after my first birthday. I have never walked, and today am classed as functionally quadriplegic. I require assistance with pretty much everything. I’m blessed to have an incredibly supportive family who have made it possible for me to pursue my goals (I’m currently in grad school). Like many young (and not-so-young) adults with disabilities, I still live at home. My family is relatively well-off, but living independently is (right now, at least) simply too expensive. I require 24/7 assistance, and neither our private insurance (which is, again, relatively good) nor the state (Florida) will subsidize any out-of-home living short of a nursing home. Case in point: a few years ago my family decided we needed to get a lift system to aid in transferring me in and out of my wheelchair. I’m pretty small, but 2-and-a-half decades of carrying me around was starting to take a toll on my parents’ backs. The system we chose was relatively simple and cost about $3,000. Despite multiple appeals, our insurance and Medicaid both refused to defray the cost. I’m lucky, in that my parents could afford to put it on their Visa. But hundreds of thousands of other Americans with disabilities aren’t that lucky, and are essentially being warehoused in nursing homes and assisted living facilities (where they are all too often victimized), denied the basic dignity of earning a living and contributing to society. I myself have yet to get a job, because doing so will disqualify me from my father’s health insurance.
I don’t share all of this looking for sympathy. I share it because it is the daily reality of hundreds of thousands of Americans with disabilities, and will one day be the reality of all those “special needs children” like Trig Palin and their families.
Many people don’t realize that until the Americans with Disabilities Act was signed into law, people with disabilities in this country were not guaranteed full civil rights. It’s also widely unknown the extent to which the Supreme Court has limited and in some cases completely nullified that essential piece of legislation in the intervening years. To have a disability in America today — whether it’s physical or cognitive, visible or invisible, congenital or acquired — is to live on the edges of society. People with disabilities, as a population, are more vulnerable to changes in the economy, homelessness, abuse, and depression than nearly any other group.
That’s why those of us who are true advocates for the disability community (I was Ms. Wheelchair FL 2005 and am involved in various groups as an advocate, facilitator, or educator) cheered the entry of Sen. Barack Obama into the presidential race. Sen. Obama, whose father-in-law lived with MS from his late 20′s until he passed away in 1990, is the first presidential candidate to make disability rights a central plank of his platform. Personally, I’d always assumed (being a fairly hardcore feminist) that I’d support Hillary Clinton when she ran for president. But I cannot articulate what it felt like, the first time I visited Sen. Obama’s website, to see the word “Disabilities” listed in the Issues menu, right alongside education, the economy, and Iraq. To borrow a phrase, I felt like my invisibility had been shattered. Sen. Obama not only has a series of specific, significant policies to offer; his entire orientation towards people with disabilities is what we call “people first.” It’s usually a term heard in relation to language (call me a woman living with disability, not a disabled woman). While Sen. Clinton did, to her credit, propose some similar measures (although watered down by comparison to Sen. Obama’s), to find these proposals, one had to dig through her — wait for it — health care plan. To me and many others, Sen. Obama is not just an advocate for people with disabilities here and around the world. He represents the kind of shift in thinking about how we talk about disability, how we bring people with disabilities fully into society, that is necessary for real change to occur.
That brings us to Sen. McCain, of course. His campaign likes to tout that he was one of the cosponsors of the original Americans with Disabilities Act… but so were 62 other senators (each and every one, apparently, a maverick). In truth, Mr. McCain is pretty much silent on the issue of disability. A search of his ccampaign site turns up a boilerplate “we feel your pain” statement on autism lacking any specific plans. Otherwise, the word “disability” only pops up in relation to veterans. And we all know his record on veterans’ issues (in a word? shameful). And, notably, Sen. McCain is not a cosponsor of S.3406, the ADA Ammendments Act of 2008, which aims “to restore the intent and protections” of the original law, even though a bipartisan group of 65 senators do have their names on the law. I guess that’s what he means by being a maverick. (FYI: S.3406 has been recommended for a floor vote, and disability advocates are pushing hard for the vote to happen before the election.) Other information about McCain’s views is sparse. He offered a prepared speech at the American Association of People with Disabilities (AAPD) annual conference, again lacking in any specific policy plans and, in my opinion, rather patronizing in tone. He did not respond to the questionnaire on disability rights issues sent to the candidates by the AAPD and other advocacy organizations.
(For a detailed, side-by-side comparison of the candidates’ positions on these issues, please refer to the AAPD Presidential Election Action Center.)
And then we have Sarah Palin. It appears true that, while governor, she took a number of steps to help defray costs for families with young children with certain disabilities, although her actual role in developing that legislation is unclear. According to a NY Times article yesterday, Palin’s self-proclaimed advocacy has been a bigger surprise to no one than the Alaskan disability community. But let me be very clear: every voice in this fight is needed, and I applaud Gov. Palin for using her office to help families who need it. I do not, in any way, mean to denigrate that work. or her personal experience as a mother of a child with a disability.
With that said, Sarah Palin is not nominated for President. Regardless of her passion, any policy proposals she has would rightly come in second to John McCain’s in a McCain-Palin administration. We vote for the person at the top of the ticket for a reason: unless something terrible happens, they are the one actually in power. So despite Palin’s positioning as some kind of champion for civil rights, we must never forget that she’s stumping for a guy who apparently (given the evidence) couldn’t care less.
Sarah Palin is, of course, a very smart plitician. She must know all of this. She must know that every time she talks about her son Trig and vows to fight for “special needs children” she is taking advantage of a very vulnerable population, people who are tired of fighting with insurance companies and schools and employers, people who desperately need to know that they are not alone. She is shattering their invisibility — but in doing so, she’s only offering false hope. This is fundamentally unfair, and outrageous.
The person it’s most unfair to is Trig Palin himself. He’s hardly old enough to know it, and he may never, but he is being exploited by a cynical political machine that cares more about winning than governing. In our society, people living with Down’s Syndrome are the cuddly crips. We see them as sweet and loving and docile and unthreatening. They don’t remind us of our own mortality, they don’t remind us that “shit, that could be me sitting there, as many times as I’ve gotten behind the wheel after a few beers.” They remind us, frankly, of Corky. This is paternalism at its worst, and I believe that the Republicans — Sarah Palin included — are trading on misplaced sympathy and, as I mentioned, false hope, just to win votes.
One day, God willing, Trig Palin is going to be a young adult who wants to live away from home, get a job, and generally live a normal life. And on that day, he will not care about his mother’s witty sarcasm or ability to call herself a pitbull in lipstick and retain any sense of dignity. He will want to know what she did, as an elected official, to make his life easier.
I hope she’s working on some better answers than what we’ve seen so far.
