Life, Death and Spinal Muscular Atrophy
Nov 20 10:43
Hi Ms. Shapiro,
I live in Susquehanna Township and have enjoyed your reporting since I first moved to the Central Pa. region back in 1995. I've worked in the disability field since 1990, and have a disability myself. For the last eight years I've been on the editorial staff of New Mobility, a monthly lifestyle magazine that is geared toward wheelchair users.
Throughout my career in the disability field I have come to know quite a few adults with spinal muscular atrophy. Perhaps the most prominent was Charleston, S.C., lawyer Harriet Johnson, who unexpectedly passed way last year at the age of 50. Johnson is author of "Too Late to Die Young," a memoir chronicling life with SMA, and dealing with, among other subjects, the attitudes of those who feel people like her should have been left to die as infants. Another well-known person with SMA is Laura Hershey, also a writer as well as an organizer, who lives with her partner in Denver, Colo. Laura has used a ventilator as long as I've known her. Her partner, Robin Stephens, has severe cerebral palsy and is a lawyer practicing in the Denver region.
I'm telling you all of this to suggest that your report on SMA wasn't balanced. For example, showing the medical text-book photo of an infant with SMA was macabre, and the only purpose was to reinforce the report's view that life with such disabilities as SMA is not worth living. This view was strengthened by the decision to not interview an actual adult with SMA, who can speak for herself, and who might not agree she should not have been allowed to live.
I feel for the young parents interviewed last night, and mourn that they were frightened into making the decision that led to the death of their daughter. I wonder if they would have made a different decision if they had met adults living with SMA or other similar disabilities. I wonder, too, how many other families watching last night will now choose to prevent their disabled children from living to adulthood as well.
To help undo the harm of last night's report, I urge you to do a follow-up report that focuses on how adults with such disabilities as SMA are living fulfilling lives right here in the Central Pa. region. We have a great Center for Independent Living in Camp Hill, the director is Theo Braddy, who lives with quadriplegia. The phone number there is 731-1900 and the website is cilcp.org. Also, if you'd like, I can provide you with names and contact info of people to interview.
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Nov 20 01:55
I think you've hit the proverbial nail on the head. These decisions are made out of fear, and ultimately reflect the inability to deal with reality. Perhaps that part of the equation relates to the isolation people confronted with disability feel (in this case, the parents). Society has miles to go, and the woods are dark and deep, but not yet "lovely."
Lucy Gwin |
Nov 20 03:53
Thank you, Josie. Suddenly, right here in the USA, it's politically incorrect to wish to remain alive.
I wear a dog tag that says: "This is my official medical directive: Spare No Expense. Keep Me Alive." Even so, hospital social workers ask who is my medical decision-maker in case of one thing or another. I tell them I believe my tag says it all. They seem to want to have an appeal mechanism to undo my true wishes!
Who ever thought this day would come?
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