Recently the Petrie-Flom Center’s annual conference brought together medical experts, bioethics scholars, and disability advocates to rethink how medical systems and public health policies can engage with disability.
Doctors in North Dakota perform a kidney transplant. (Photo by ndguard/Flickr)
In recent years, alleged instances of discrimination against people with disabilities in organ transplantation have captured public attention.
In 2012, for example, the parents of Amelia Rivera, a child with Wolf-Hirschhorn syndrome, alleged that they were told their daughter was not a candidate for a kidney transplant because of her “mental retardation.” The Children’s Hospital of Philadelphia denied “disqualify[ing] transplant patients on the basis of intellectual ability.” Nevertheless, more than 51,000 individuals signed a change.org petition demanding that the hospital “allow the life saving [sic] transplant four-year-old Amelia Rivera needs to survive.” Ultimately, Rivera received a living donor kidney transplant from her mother.
Do the provisions of the 2008 Americans with Disabilities Act Amendments Act (ADAAA) address challenges faced by medical professionals with disabilities (MPD)?
A 2012 report on Americans with disabilities from the US Census Bureau suggests that it is highly unlikely. There is every reason to be alarmed by the increasing number of medical professionals with disabilities who leave their jobs, or express the intention to quit employment. There is also a rapidly decreasing number of MPD who express the desire to seek employment. Could this trend be attributed to the challenges faced by the MPD in the workplace?
Anyone fortunate enough to live beyond middle age faces a risk of developing dementia. Dementia is a widely feared disability. People often say they wouldn’t want to live if they developed the condition.
Experts in law and ethics praise advance directives, or instructions to follow on behalf of patients, as a tool giving people control over the life-sustaining medical care they later receive as mentally impaired dementia patients. Some advance directive supporters also want the law to recognize advance requests to withhold ordinary food and water in the late stages of dementia. And some argue that the U.S. should follow the Netherlands in allowing doctors to give lethal drugs to people who made advance directives asking for assisted death if dementia makes them unable to live at home or to recognize their loved ones.
Public health law can integrate medical and social understandings of disability in ways that promise to reduce disability stigma and enhance epistemic justice.
However, models of disability currently embedded in public health law do precisely the opposite, at least partly due to the fact that public health laws have historically assimilated medicalized models of disability.
“Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 (1987).
Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.
Another anniversary of President Bush’s signing of the Americans with Disabilities Act (ADA) is coming up in late July, yet the nation remains far from offering even a semblance of equitable societal opportunity to most individuals with disabilities.
For them, full social participation is dismissed as merely an idealistic dream. With its focus on restoration of full functioning for patients, the health care delivery system might be supposed an exception, but a closer look shows the opposite is true.
Physicians’ offices, clinics, and hospitals too often have not been made accessible. Too frequently, these facilities have diagnostic or treatment equipment that some people, due to disability, cannot use. Health care provider staff are not trained to interact with or assess disabled individuals, and may be swayed by implicit biases that target disability, just as are non-medical personnel or laypersons in the population.
Photo by The Leadership Conference on Civil and Human Rights/Flickr