A reader writes:
I apologize upfront for this long note, as I know you are busy, but frankly the "Saint Sarah, advocate for those with special needs" BS is something I find so offensive that I feel the need to set the record straight.
As the parent of a special needs child, I know "Mama Grizzlies." Sarah Palin is not a Mama Grizzly. She actually represents the sort of ignorance of the special needs community that makes the job of real Mama Grizzlies much more difficult. For instance, I was appalled that her one and only policy speech during the campaign demonstrated her ignorance on a crucial aspect of special needs advocacy: fruit fly research. Not only did she misunderstand the purpose of using fruit flies (as a predicate for humans - we share 60% genetic material), she failed to do basic research on who was funding the study in question (it was not the US government; it was the government of France collaborating with the NIH). Like other politicians who have tried to score political points by ridiculing research they are too scientifically illiterate to understand, Palin’s potshot succeeded only in highlighting her ignorance about a crucial area of special needs advocacy.
As real Mama Grizzlies know, our children’s needs have no party affiliation. They exist and deserve to be addressed outside of petty political pandering.
I wrote her a letter in response to her speech, pleading with her to learn more about the need for research into rare and chronically debilitating disorders. I pointed out that for every person in the United States, our government spends between $2200 and $3400 (depending on what you include in the budget) and only $103 per citizen to support NIH research. If you drill down to rare and "special needs" disorders, that number drops to a measly $.06 per American (based on the annual budget of the Office of Rare Diseases Research). And yet she ridiculed even that paltry investment in special needs research.
I told her about my daughter, who has a very rare genetic disorder, and my 20+ years of pushing researchers to unravel the complex genetics associated with it. When we started in the late '80s, there were not even enough diagnosed patients worldwide to provide the volume of genetic material required to do solid studies. However, there was a human predicate: a plentiful and cheaply available algae called Chlamydomonas that could be grown in abundance. By studying the genetic makeup of Chlamy, researchers have been able to identify multiple human genes associated with disease. It is not an exaggeration to say that the majority of what we know about certain complex human diseases is based on research done, quite literally, on pond scum.
On one hand, I am thankful for Sarah Palin’s sloppy approach to policy research. Because she doesn’t know about this research, it was not subject to the same hurtful and ignorant sarcasm she directed at the families who are relying on research in fruit flies to provide some badly needed answers about their loved ones' conditions. On the other hand, there is no excuse for someone who wants to wear the mantle of Holy Mother to those with special needs to be so ignorant of this area of advocacy.
This is why Trig matters. Unwarranted ridicule and mean-spirited sarcasm directed at others with special needs, even if it is based on profound ignorance and not malicious intent, is not the behavior of a true Mama Grizzly. Palin’s behavior actually proves that simply giving birth (if she indeed did), does not make you a Mama Grizzly. Working hard to understand the needs of your child and others like him, and working even harder to make sure he and his cohort get the care they need, does.
I’ve been at this for 20+ years and am rendered speechless by colleagues who buy into her special needs self-promotion. In fact, the evidence shows that she has used her position and public prominence to make the job of real Mama Grizzlies - those of us out there daily pounding the pavement and petitioning our representatives for better research and services - that much harder.
From this standpoint, I am less concerned than others about whether or not she gave birth to Trig, because the end result is the same. Whether she is his biological mother or not, it appears she is willing to use him as a stepping stone to achieve her personal political agenda. The focus of her "advocacy" is on her, not him. She seems not to know or particularly care what special needs advocacy really looks like. It is insulting to those of us who have made tremendous sacrifices to help those with special needs that she is assigned status as an advocate merely for giving birth (supposedly) to a child with special needs. I hope she makes an effort to start living up to her hype.
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