Wednesday, February 12, 2014

In case you think I have forgotten

Especially because it is hard for many to recognize and acknowledge people whose lives are significantly different, the unqualified humanity of people with serious cognitive disabilities needs reiteration.


 ...the cultural divide between people with a disability such as myself and many others and parents of children and adults with profound disabilities. Our life experience with disability is radically different. Our respective approach to life with a disability is radically different as well.. Sadly I have come to the conclusion a coalition between people with a disability and parents caring for a loved one with a disability can never be formed. Bill Peace

I am uncomfortable because now I’m aware of the necessity for activism and frankly, it sounds like unpleasant work. Jennifer Johannesen

My understanding of disability has completely changed since I began writing this blog. To some readers, I may have crossed a line even, perhaps aligning myself too closely with disability self-advocates.

I am, however, carefully pondering the different expressions of advocacy within the disability community. And where Jennifer Johannesen--someone who understands the realities of caring for a child with severe disabilities--contemplates the need for (and challenges associated with) a movement to advocate beyond one's personal circle, Bill Peace surmises that it is likely impossible for the two disability worlds (caregivers and self-advocates) to meet.


Both these writers make important points. We need to change the world, but what our respective groups are fighting for seems too different to form a cohesive group. I disagree, however, that it cannot be done but it is fact that both "sides" need to move toward more common ground.


Disability self-advocates will first need to explore and embrace more fully the experiences of those living with severe, combined disabilities, whether vicariously as caregivers or as the disabled person her/himself. Bill is correct in saying that "disability pride" is a no fly in our world, as is a rejection of "cure" and strident criticism of medicine.


Generally speaking, disability self-advocates always seem to ignore the concept of severity.  Severe, combined disability can express in some appalling forms (look up Lesch-Nyhan syndrome). There are violent and/or self-injurious behaviours, bizarre and dangerous urges (consider pica and one case I came across describing anal picking), constant seizing, severe distonia, cyclical vomitting and chronic pain (this is the short list) and usually all bound up with intellectual disability.


First, it is hard to imagine that any human being experiencing these severe forms of disability is going to "enjoy" life, much less pride themselves in their disabled form. And here step in the medical people to try and relieve the worst aspects of this life with drugs or whatever treatments with more, or (more often) less success. Some forms of disability are so compromising as to require ridiculous levels of medication so that the individual involved is facing either a life of violent symptoms or one of perpetual semi-consciousness. Some individuals are quite simply medically fragile and spend a good part of their lives popping in and out of crises, requiring hospital rescue on a regular basis. Disability pride? Anti-cure stance? I think not. Disability self-advocates need to see, accept and address this reality in their rhetoric. The medical model of disability is disadvantageous on many levels, but the hard fact is that in the world of severe disability, it has a valid position and, if nothing else, is often the provider of descriptive vocabulary necessary for we caregivers to access and tailor much needed services.


Bill Peace asserts correctly that,..no parent wants their child to have a disability. No parent wants to see their child struggle. No parent wants to see their child ostracized. No parent should ever be put in the position of having to demonstrate their child's life has value. Yet this is the experience.  Certainly, many heartaches can fill the life of parents of any "typical" child, but there is nothing comparable to watching and hardening oneself (if that actually ever really happens) against the daily onslaught of physical and sometimes emotional trauma experienced by one's severely disabled child. It requires nerves of steel. Maintaining the stance over years is wearing in ways that defy description. Not all are equipped to hold out, or hold up. Even if a child is relatively stable, the effort required to provide 24/7 personal care can burn out the most vigorous after a decade or more.

Eva Kittay writes: As carers, our moral labor demands that we imagine the world from the perspective of the one cared for; we respond to the cared for in accordance with her own needs, desires, interests; and we attend to ways that our own needs, desires, and interests may color, obscure or deflect those of the individual cared for.  This is already hard when one is dealing with a still unformed person such as a young child, but is especially challenging when the person being cared for cannot be explicit in communicating needs and interests. (Forever Small)  Once again, the psychological challenges inherent in caring for a severely disabled individual are outlined here. We caregivers are constantly questioning ourselves, doubting ourselves, wondering if what we are providing for our loved ones is right for them, if it pleases them, if it brings them comfort. As a result, we are often very sensitive to anything that might be interpreted (rightly or wrongly) as criticism from outsiders. It is often felt that disability self-advocates are quick to stand in the stead of the ones cared for, openly criticizing the choices parents make, unaware of the complex interrelationship between parents and their severely disabled children and equally unaware of the fact that most of our choices by necessity fall into the category of the lesser of evils.


And so, if we are going to begin a productive dialogue between disability self-advocates and parents/caregivers of severely disabled individuals, trust will need to be developed: trust based on the belief that those disability activists who can speak for themselves and possibly even live independently (or nearly so) acknowledge the reality of severe disability and pay full respect to caregivers and the challenges both physiological and psychological that they face on a daily basis.

It's not, however, a one way street. Parent caregivers of the severely disabled have some learning to do as well. There needs to be some movement on their part toward the centre where, hopefully, we will all meet to bring about change. I will address some of that in my next post.

14 comments:

  1. This might be one of your most powerful and important posts, Claire, and I'm in awe of your ability to articulate the role of the caregiver of the severely disabled child without getting "emotional." I look forward to the next part.

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  2. The particular type of disability self-advocate who are antagonistic to carers are quite a small clique, as many of them in fact have carers. Many of us are friends with some carers (usually parents or spouses) who advocate for their disabled relatives who cannot (at least fully) advocate for themselves. One of them is currently trying to stop a psychiatrist sending her daughter to a secure hospital which is 185 miles from home and is completely unsuited to her needs -- she couldn't do that for herself.

    Unfortunately the clique is quite vocal, and some of their dogma has become official doctrine, like the tireless use of "disabled" to mean anyone who would be called a person with a disability anywhere else, and was here too about 15 years ago. Some of them come out with utterly ridiculous ideas -- one of them insists that all nursing and care homes should be shut down, because she had a bad experience in one a few years ago. When I pointed that out in a blog entry, she blocked me on Twitter and subsequently spread lies about me.

    As for Lesch-Nyhan Syndrome, I've not encountered it personally but I've seen websites on it. A lot of the people with it spend much of their lives in restraints of one sort or another. The key is to physically stop them self-harming, because they don't actually *want* to hurt themselves; it's a compulsive thing and they will want you to restrain them. So it's possible to make their lives bearable, but they do need a lot of support.

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    1. Hi Matthew. Always happy to have your input. I am not so much talking about direct antagonism toward caregivers as much as a general lack of awareness of or attention to the role of the caregiver in disability advocacy and a lack of inclusion of severe disability in the development of models in which to frame disability. It was this that got me blogging to begin with: nothing I read in academic papers or on self-advocate blogs addressed the realities of daily caregiving and the need to interpret needs, desires, wants of the individual cared for, all the while managing my own.

      As for Lesch-Nyhan..."it's possible to make their lives bearable"...yes, just bearable. I had to say, that one syndrome really made my head spin.

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  3. Those with "issues" need to learn to deal with them and form a life that does not revolve around a diagnosis. I have never allowed my eldest to be "autistic" or use the word. Never allowed the school to do so either. Maybe, that's one of the reason's we are having social skills issues... but I think it was the best option. Therefore he is, who he is... period. He is not a diagnosis. I am always stunned at people who need that recognition that they have "something" to function. I don't understand that at all.

    My youngest fits the severe/mod line or Level 2 of ASD. He's not ID, but the autism is enough to frustrate everyone including him. He'll be the first to tell you that he's upset that he cannot do everything everyone else can.

    A disability means to be disabled. To be unable to do what other's can do. NOT a way of "being". We need to make that distinction because I have yet to meet a professional that agrees with the lobbyists. We need supports for the disabled to be part of society. By "dumbing down" the severity of the issues, supports vanish and the lobbyists can't understand that.

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    1. I used to think the same about "why do you need a diagnosis", until I came across people for whom the diagnosis led to treatment that alleviated symptoms, others who learned they were "carriers' and how to test their relatives/genetic pool. A host of other things too...anyways, it's when the diagnosis is used to limit freedom (like they did with Ashley X) that problems arise. And yes...supports! It's all about supports.

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  4. When's your bit on Jennifer Johanssen's blog going to be published?

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    1. Not sure! Gotta go check with Jennifer... :)

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    2. tomorrow! gonna publish it tomorrow! :)

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  5. I'll be writing about my conversations with Claire in the next post - in the meantime I've announced the new video site and posted one of Claire's videos: http://johannesen.ca/2014/02/video-project/

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    1. Very well done. Thank you, Jennifer and Claire.

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