Imagine your doctor suggesting that instead of receiving treatment for a potentially fatal but otherwise treatable condition, you should consider an alternative—death. For most people reading this piece, such a situation would be unthinkable. Yet for those of us who are disabled—mentally or physically—going to the hospital can actually be a dangerous decision.
In March of this year, the Autistic Self Advocacy Network published a report on widespread discrimination against disabled people who need organ transplants. In the same month, the United Kingdom sponsored a three-year study entitled Confidential Inquiry into Premature Deaths of People with Learning Disabilities that found over 1,200 cases in which mentally disabled people suffered avoidable deaths. The report noted that doctors were far more likely to issue rapid and premature life and death decisions or “do not resuscitate” orders solely based on a person’s disability.
This Easter Sunday, it was particularly frightening for many of us in the disabled community to learn that Amanda Baggs, a well-known, widely respected disability rights theorist, activist, and writer, was admitted to a local hospital for gastreoparesis. Amanda is Autistic and multiply-disabled, and does not speak. She types and uses personalized picture boards to communicate. That morning, a doctor entered her room and suggested that instead of receiving a feeding tube, which is a routine procedure, she should consider the alternative. For Amanda, the alternative would have been death.
After torrents of phone calls from members of the disabled community to the hospital, the medical staff determined that Amanda would undergo the procedure, which is typically performed with local anesthetic. Due to a separate medical condition, local anesthetic is ineffective on Amanda. Medical staff assured her that she would forget the process because of an amnesic in the anesthetic. She did not forget what had happened, nor did she experience the intended effects of the anesthetic. Amanda functionally underwent surgery without anesthesia. In her words, she was punished for choosing to live.
For the rest of us in the disabled community, it is a waking reminder that in 2013, even one of the most prominent pioneers and leaders of the Autistic community could be subjected to such appalling treatment and attempts at coercement into choosing death because she is disabled. If this could happen to Amanda Baggs, it could certainly happen to the rest of us. Amanda herself made the astute and chilling observation that, unlike her, most developmentally disabled people do not have the social connections to bombard an uncooperative hospital with phone calls on their behalf. Most developmentally disabled people unfamiliar with the history and continued practice of medical discrimination might even be unaware that “the alternative” is death.
Georgetown University’s own hospital has been guilty of discrimination and casual ableism toward disabled patients. I’ve learned from friends of mine with a variety of different disabilities, both physical and mental, about the types of microaggressions they faced while seeking medical treatment on our own campus—and this is at a university that prides itself on its respect for diversity and care for the whole person.
As a disabled person, I should not be afraid to seek medical services if I am in need of treatment, but the reality is that most medical professionals are ill-equipped to work with disabled patients, let alone recognize our experiences and expertise on our own selves. These astonishing disparities in access to and quality of healthcare for the disabled are well-documented but rarely addressed in public policy.
Further compounding the adverse effects of such healthcare disparities on disabled people, these systemic disadvantages are not limited merely to general healthcare services, but are also deeply entrenched in mental health services.
Where stigma, shame, and baseless fear dominate conversations about psychiatric disabilities, those who might otherwise want or benefit from mental health services are presented with fewer incentives to seek them. Climates in which groups of already marginalized people are scapegoated for institutional problems of violence are not conducive to encouraging people to seek even essential services. This hindrance is especially true with the absence of empirical evidence linking psychiatric disabilities to violence in consideration.
The presumption that it is necessarily unfortunate or bad to be disabled contributes to the conflation of health with morality and value. The dehumanization of disabled people begins with the presupposition that a disabled life is one less worth living and that disabled people would be better off dead than living disabled. This attitude, which is so pervasive in our society—and particularly common in a Western society that moralizes autonomy—has deadly consequences.
In 2012, Paul Corby was denied a medically necessary heart transplant solely because he was autistic. This Easter, my friend almost suffered a similar injustice. For those who are able-bodied and neurotypical, these names and numbers may mean little. For those of us whose bodies and minds are limited by institutionalized ableism, they are reminders of the cruel reality that there are no safe places for us—not even in hospitals, where doctors are supposed to save lives.