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The history of the medical maltreatment of and experimentation on people with developmental disabilities has been so common that it would be easy to dismiss the work of Gunther and Diekema,1 reported in their article “Attenuating Growth in Children With Profound Developmental Disability,” as just one more tragic example.
As a person with cerebral palsy who was not supposed to be able to walk, talk, or think but who has led his profession for 25 years and is married to a woman whose body is extensively scarred by failed experimental surgeries that were supposed to ameliorate her cerebral palsy, it would be even easier to dismiss their article with intense anger. That was my first reaction and the universal reaction of my colleagues in the disability movement.
The notion of further medically disabling a 6-year-old girl with a disability by stunting her growth for the convenience of her caregivers calls to mind a litany of other crimes committed against defenseless people with disabilities by good people in the name of bad ideas: ships of fools, institutionalization, eugenics, forced sterilization, experimentation with radiation and other deadly agents, and euthanasia. These ideas all had several things in common: they represented the best scientific and/or medical thinking of their times; they were endorsed by the leading organizations and individuals in the medical community; and people with disabilities had no say in their development or implementation. Most of them shared another fatal flaw: they attempted to impose medical solutions on what were essentially societal problems. That is certainly true in this case. It offers the wrong answer to a difficult problem, which requires a societal, not a medical, solution. The girl's family needs and should be entitled to the support needed to include her as a loving family member without intentionally deforming her body further.
Both the article by Gunther and Diekema1 and its editorial2 admit that the risks of the procedure are not fully known. Both recommend further research to determine those risks. That may be a logical conclusion to those trained in medicine. To people with disabilities, it is one more example of medical experimentation on people like us.
Stop it. We are not mice or rats or kitty cats. The final affront is to suggest that this matter is worthy of ethical debate.
Correspondence: Mr Ellis, Alliance for Disabled in Action Inc, 629 Amboy Ave, Edison, NJ 08837 (eellis@adacil.org).
Financial Disclosure: None reported.
Country-Specific Mortality and Growth Failure in Infancy and Yound Children and Association With Material Stature
Use interactive graphics and maps to view and sort country-specific infant and early dhildhood mortality and growth failure data and their association with maternal
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