May. 9th, 2008

theladyrose: (Default)
It looks increasingly probable that I'll be staying an extra year here to get my master's in gerontology, or the study of human aging. It also means that I have to get my recs and whatnot for grad school ready by fall of next year, but on the bright side, I don't have to take GREs, and I think my chances for getting into the program are pretty decent. Mostly it's that USC's really making an effort to retain undergrads for their grad programs...unless it's the clinical science psych program, in which case all bets are generally off because it's one of the most research-intensive out there. Go figure.

What happened to clinical psychology? The average PhD acceptance rate is lower than that of med school at 6%, and I don't think I have the mettle to last 7-8 years in a research-oriented program. After doing research just as an undergrad, I've realized that I'm really not cut out for it; my mentor/professor was so right when she warned me that (quantitative) research sucks out your soul. Seriously, I wasn't sure if I had a soul until research this semester nearly drained it from me. My chances of getting into a doctorate program are much better if I specialize in working with traditionally underserved and rapidly expanding population, and if doctorate programs don't end up working out, at least I have a good vocational safety net in an area that honestly interests me. My preoccupation with caregiving issues and the fact that I have a much easier time connecting with older adults than with kids seems like a decent preliminary indicator that the subject matter's a good match. At the very least, all of us grow older, so you might as well learn while you're young about the issues that you'll be facing.

My mother's response to hearing about all of this was "We'll support you, but is your heart really in it?" That's the first time I've been criticized for giving primarily practical reasons for a decisions! I laughed inwardly when she said that - my mother, the would-be writer who wound up in finance, is much more the closet romantic than I am. People, even my mother, tend to see me as either having a brain or a heart, but not both in equal measure. I attempt to research my future in nauseating detail so that I can plan accordingly; dreams are great, but you can't expect that desire alone will get you where you want to be. I can't exactly tell her that one of the main motivating factors is that I want to know how to take care of her and dad better in the future when she herself is anxious enough about the prospect of aging. I don't know how to explain to her that pragmatics can coincide with passion, that I understand that compromise is necessary if you're going to achieve anything sustainable and worthwhile.

On a somewhat related note, Dad has his "one year later" follow-up with his neurologist to check up on the progression of his Machado-Joseph disease in a couple of hours. Around this time last year, he showed "significant clinical improvement" a month after a month of stem cell treatment in China. As for the long term gains, who knows. I'm personally skeptical that it'll do any good in the long run. Due to the fact that Dad received spinal cord injections of umbilical cord stem cells and not embryonic ones, he basically received a sophisticated form of blood doping where most of the stem cells turned into extra red blood cells, which temporarily make one feel more energized. I can't quite remember where I obtained this information, but from what I've heard, umbilical cord stem cells aren't as good at passing through the blood-brain barrier.

In some ways, I'm one of the worst people to be "educating" people about stem cell therapy from personal experience. I've written a brief account about it here, but I seriously doubt that anyone on campus really read it. The reporters still call home sometimes; inevitably, we know what articles will be written by the Western press. Honestly, it pisses me off that they write about we patients like we're a bunch of desperate patsies looking for any cure that has some sham of promise. There was this one Salon article that makes me cringe for its condescending tone. People don't pay $20,000 to be human guinea pigs solely because they're naïvely deluded about the possibility for being cured. The prevailing social stigma and discrimination against people with disability makes their lives so unbelievably difficult on them and their caregivers that they are willing to try anything because they have nothing to lose.

When you've grown up with a parent with a chronic medical condition, you know better than to even think of cures. I don't expect to see a cure for my dad's condition in my lifetime; to be honest, from a utilitarian viewpoint, funding's better allocated to other medical conditions such as cancer and stroke that affect a greater proportion of the population. I just want to live in a world where people with disabilities can actually find jobs in accessible workplaces and be able to use public transportation without fearing that the bus drivers won't stop for them because loading them on will delay everyone's schedule. In some ways, that's why I have difficulty understanding all of these "Walk to Cure Muscular Dystrophy" races. I don't doubt that new vaccinations and screening measures will benefit everyone in the long run. But why must we spend so much time and money on developing medical treatments that will inevitably only work for some of the population and yet neglect relatively simple accommodation measures for people with current impairments? The medical conceptualization of disability posits disabling conditions as needing to be cured, rather than to be accommodated and a focus of lifestyle adaptation in cases where the underlying medical conditions currently lack a cure. A social model of disability advocates an environment that's universally accessible and recognizes the influence of social attitudes about the capabilities of those with physical and cognitive impairments play in the roles we have available for people in the disability community. And being tired makes me ridiculously wordy.

Anyway, getting back to my original point - as important as it is to foster dialogue about the ethics of stem cell therapy and regenerative medicine, we risk overlooking the underlying issues of disability awareness and rights. The dangers of focusing so much on finding cures for severe medical conditions is that we ignore the necessity of providing accommodation for those with disability and creating more enabling environments so that everyone, not just the able-bodied, can truly celebrate “culture of life.” Using stem cells to cure chronic diseases underscores the prevalence of the medical model of disability and the social prerogative in eradicating the conditions that cause disability. Patients are driven to seek expensive, potentially risky experimental treatments abroad because they find that their quality of life has significantly deteriorated due to the lack of resources for people with disabilities and their caregivers. If legislators are hesitant about funding embryonic stem cell research, they could invest public resources instead into extending access to people with disabilities instead of forcing scientists to pursue embryonic stem cell research elsewhere. The ideal goal of stem cell therapy is to improve the quality of life for those with medically related impairments, but there are multiple avenues of pursuit in achieving this objective. As important as it is to acknowledge and protect the rights of humans coming into being, it is all too easy to overlook the eroding civil rights for people with disabilities and the sociopolitical conditions that have made stem cell therapy such a pressing issue in the first place.

OK, I confess: this is my belated Blogging Against Disablism Day post. And there's a lot more I have to say about the subject, except that I really need to finish my take home final for my disabilities and healthcare class, so I'll get around to that later.

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theladyrose

June 2010

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