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.
Eva Kittay from Forever Small: The Strange Case of Ashley
...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.