Friday, March 1, 2019

Disabililty Day of Mourning 2019 and the Presumption of Caregiver Benevolence

Every March 1st, the disability community mourns those of us disabled people whose lives have been lost too soon, particularly those who are the victims of caregiver and familial violence due to prejudice and hatred directed towards us as a result of intolerance for our disabilities. Disabled lives are ended prematurely all too often for a variety of tragic reasons. Sometimes the issue may be the physical health problems that we live with which in some cases have the potential to cut our lives short. Sometimes the issue is a lack of funding and resources devoted to our care and welfare, which can have particularly deadly consequences for us. As was the case with the recently departed disability rights activist Carrie Ann Lucas, sometimes insurance companies and/or governmental austerity policies are at least in part to blame. Sometimes the issue is one of medical malpractice, medical neglect, medical paternalism, or even the medically sanctioned killing of disabled people, all ways in which the medical industrial complex all too frequently systematically disvalues the lives of disabled individuals with devastating consequences. However, one of the most salient causes of the death of disabled people, both disabled adults and disabled youth, that is discussed widely within the disability community but almost entirely ignored outside of the community, is the epidemic of caregiver and familial violence that disabled people face and all too often lose their lives as a result of.

   In our society, we like to think of caregivers, especially parents, as always loving, benevolent, and well meaning. We want to believe that even when they may not always do the right thing, they fundamentally want what is best for those in their care. And of course this is often the case. No one denies that many parents and caregivers for disabled and non-disabled people alike love those they care for a great deal and sacrifice a lot to try to do what is right for them. However, what we don't talk about is the reality that there are those who don't have the right attitude towards those in their care and yet wield authority over them all the same. The automatic presumption of caregiver benevolence is dangerous and deadly, particularly as its invisible and uncontested influence makes its presence felt in law, policy, and common social practices.

   According to the Autistic Self Advocacy Network (ASAN), in the past five years six hundred and fifty disabled people have been murdered by their parents. According to ASAN's website, "We see the same pattern repeating over and over again. A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the 'burden' of having a disabled person in the family. If the parent stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten. And then the cycle repeats."

   Two major societal assumptions are at work in terms of how the media and the culture at large reacts to these events. Ableism is a major part of the equation. So is the presumption of parental and caregiver benevolence that ultimately harms disabled people of all ages as well as youth with and without disabilities. Disability and youth liberation and oppression are intimately intertwined with one another. The Disability Day of Mourning is a day that youth and disability rights advocates should take time to reflect deeply on these connections, mourn for the victims of violence justified in the name of ableism and paternalism, and recommit ourselves to working for a more just world for both disabled people of all ages and for youth with and without disabilities. This is what understanding intersectionality is truly all about. 

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