Caregiver Violence: The Conversation Continues

It seems that my posts arguing for compassion for the mother who attempted to kill her autistic son have stirred up some discussion. Last night on Facebook there was a spirited discussion among a handful of parents who are raising kids with disabilities, notably autism. I waded in and was taken to task. While such conversations are often difficult for those of us who passionately support a particular viewpoint, it is good to try to find common ground and tease out our points of dissent. I appreciate such challenges to my thinking. It helps me clarify my ideas, but also forces me to see if there are places of convergence – which I think there are.

One of the parents who disagreed with my points posted an article by the Autistic Self Advocacy Network (ASAN) that can be read via this link.

http://autisticadvocacy.org/2012/04/killing-words/

The gist of the conversation on FB (as I understood it) disagreeing with my call for leniency hinged on two key arguments. First it was argued that by not fully punishing people who harm their profoundly disabled children we risk the safety of children and adults with disabilities. By not punishing parents who harm their disabled children we create a climate where violence towards those with disabilities seems acceptable. Second, it was argued that by offering leniency to extreme caregivers who harm their children we risk creating a hierarchy of value attached to people with disabilities such that the more severe the disability the more acceptable the violence.

I would argue both points. No surprise there.

My final concern about the discussion that ensued last night is linked to the article cited above. The article shuts down all dialogue about caregiver violence by resorting to an emotional guilt trip. It suggests that if we want to talk about the problem we should try to talk to the children who have been murdered. This, of course, is a logical fallacy and shuts down voices of dissent. The death of any child is a tragedy, but by shutting down the conversation about what might have lead to their murder I fail to see how we can identify solutions to solve the real, and I would agree unacceptable, problem of caregiver violence. Shutting down the conversation fails to protect future possible victims of caregiver violence because we haven’t taken time to understand how a parent arrived at a place where violence seemed like an “answer”.

First I need to point out that I strongly agree with one of the key points offered by several participants in the FB conversation who took me to task. We must ensure the safety of our severely disabled children. I just think that the way to do so doesn’t involve harshly punishing extreme caregivers who “snap”. I think the problem is more complex and requires a more nuanced response.

Disability exists on a spectrum. At one end we have people and children who are able-bodied. At the other end we have people with profound disabilities who are totally dependent on 24/7 care to survive. It is a well-researched fact that as you progress along the spectrum the burdens placed on the primary caregiver increase significantly. We also know that, presently, our Canadian society does not provide enough support to caregiving parents at the extreme end of the spectrum. Among caregiving advocates and ethicists these facts are well established.  Extreme caregivers are usually isolated, exhausted, physically and financially overextended,  and experience a range of emotional suffering including clinical depression.

No matter how much we might want to we cannot compare the caregiving burdens of parents at opposite ends of the spectrum. One parent worried that this argument suggested that it became more acceptable to kill or injure children at the extreme ends of the disability spectrum and created a hierarchy of ability/disability. I can see how she might arrive at that conclusion but I don’t see it that way. What this idea of a spectrum does do, I believe, is remind us that as we progress along the spectrum of disability the issue of caregiver burden becomes intimately linked to the increasing complexity of the care needs of the person living with a disability. We cannot separate the two and if we are serious about reducing caregiver violence and promoting the safety of those who live with disabilities we need to simultaneously hear and address the issue of caregiver burnout in a very real and constructive manner.

The Autistic Self Advocacy Network has the popular tagline “Nothing about us without us” across the top of their article that reminds us of the importance of hearing all voices. I agree with that statement. However I worry that conversations about caregiver violence become so concerned about the appearance of justice and the value of a life that we disregard the very clear voices of their overwhelmed extreme caregivers. Killing, or attempting to harm, a beloved child because you are so overwhelmed seems like a pretty loud message to me, and if we are serious about protecting people with disabilities I think we need to try to hear what that caregiver’s voice is trying to say. Part of the problem, of course, is that I am not convinced that our society is all that concerned about the lives of people with disabilities before we hear of their tragic murders. The message society is also sending makes it very clear that we are not particularly concerned about the lives of their overextended parents either

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