Spinal Muscular Atrophy (SMA) is a genetic neuromuscular condition that affects approximately 1 in 6,000 live births in the US. People with SMA have a deficiency of a certain protein that keeps motor neurons -- the messengers between the brain and the muscles -- alive; when the neurons die, the muscles they controlled atrophy. The disease has a spectrum of severity; the earlier the onset, the more severe the symptoms. In its most severe form (known as Type 1), SMA is nearly always fatal before the age of 18-24 months. (Weak respiratory muscles make a common cough potentially deadly.) Indeed, SMA is the leading cause of infant mortality due to genetic causes.
But not all people with SMA have such a serious prognosis. I was diagnosed just after my first birthday, and at the time (1981) was given a 3-5 year prognosis. I'm now 29 and am much healthier than most non-disabled folk. I've never had a serious respiratory infection (indeed, I haven't even seen a pulmonologist since high school), and while my muscle weakness is profound (I'm considered quadriplegic), it hasn't significantly progressed in well over a decade. I just finished graduate school (for now) with my MA, and have a full and happy life. There are thousands of people like myself living relatively normal, healthy lives with SMA.
Which is why I'm so irritated by the messages that have been filling up my Twitter feed and RSS inbox over the last week. You see, August is SMA Awareness Month, and it has a higher profile than usual this year because there is legislation pending in Congress to devote a sizable chunk of funding to SMA research. I'm all about awareness and advocacy; I've got a meeting with my own US Representative to lobby for the legislation next week. What I do take issue with is the extent to which the "awareness" focuses on "SMA Angels" -- babies/children who have passed away.
The "Angels" constituency -- parents of deceased or seriously affected babies -- dominates the conversation about SMA, both online and out in the world. Tonight, for example, is a national candlelight vigil (a la 9/11 or Katrina) to honor "SMA Angels." I recognize that by saying this I'm inviting controversy, but I can't help but feel that this whole SMA Angels movement exploits the deceased children themselves and damages the work of those of us in the disability community who are trying to shift the focus away from the medical model of disability and towards a more celebratory, life-affirming narrative.
When I was a child, I was a state poster child for the Muscular Dystrophy Association for 3 years, during which time I was outright exploited. The overt message was "Look at this cute little girl in a wheelchair -- she's going to die if you don't phone in and donate money!" No one stood up for me back then (although I've learned as an adult that my parents did feel uncomfortable but somewhat powerless to protect me). Now I'm the adult, and I can speak up for these babies. Each of them was a unique, wonderful spirit. It is dehumanizing and degrading to frame their lives solely in terms of their DNA and their deaths -- particularly when the stated goal is to pass legislation and raise money. The fact that it's the parents who are so active makes it even more wrong in my mind -- they, of all people, should know better.
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Comments
I say let there be life, light ,warmth and love and let it shine!!!!!!!!!
I held my grand daughter in my arms while she died along with my daughter and her husband in the hospital. How dare you make judgments!!! We have a right to light a candle for our babies if we wish what business is it of yours? And if we want to spread the word on SMA then WE WILL. You are an offensive person and in my and plenty of others a very sad human being. Frankly if you feel like that I wish you could have traded places with my grand daughter so we could have her with us today!!!!!! Shame on you!!!!
Who do you think will fight to find a cure for SMA if the angel parents do not? Doctors? I don't think so; most of them have never heard of SMA. John Q. Public? Nope...has no idea what you are talking about when you say SMA. So who then? Is there a written rule that only parents with living children can work to find a cure? I never received a guidebook to SMA when my son was diagnosed to tell me that I wasn't allowed to speak of it after he quit breathing.
Do you really think that we do it to exploit our children? Seriously? Do you not understand that for us, fighting for a cure is all we have left? We were cheated; our babies were taken away by something we can't physically fight against. We can fight for future babies though. We can fight to stop another mother from going to bed hoping she doesn't wake up to face another day without her son or daughter. That's all we have left. It's not exploiting. It's called love. I'm sorry you didn't get that from your parents and were left feeling exploited by MDA. I'd suggest talking to your parents about your feelings and possibly getting some counseling. Don't take it out on us. We hurt enough as it is.
My fiance has Cerebral Palsy, he has a mild form, and this only effects him from the waist down, he is very lucky that he has as much motability as he does, this does not however make him feel 'exploited' because there are campaigns in honor of children lost by this condition. He carries out family fun days to help raise money fot this cruel condition, maybe you should be doing the same, maybe doing some good with that over active mouth (or fingers )! I think your just very bitter from what you call explotation! I think you need to swallow your pride and apologise to all who you have hurt - just think of the parents/grand parents out there angels, lighting a candle for their truly missed angels, feeling perhaps a little better that everyone is remembering their lost loved one and you come along and write something like that! you should be ashamed of yourself!