In an effort to give more visibility to the lives and concerns of those whose stories are not told nearly enough in disability circles, I’ve created a guest post series called Widening the Disability Perspective. I plan to open my blog space, on a regular basis, to guest posters from both the autism community and the wider disability community. If you are interested in guest posting, please contact me.
My first guest post, Meet Disability Norm, was written by Claire, who authors the blog Life with a Severely Disabled Child.
Meet Disability Norm
A few years after my daughter had her stroke and she became, as a result, severely physically and cognitively disabled, I started searching the internet for information, stories, references to…anything…that validated the life I was experiencing with this child. However, stories specific to severe combined disabilities were almost non-existent outside of the blog world (a world that I discovered only much later), and most searches involving “disability” tended to land on sites relating to activism and advocacy.
I learned from this virtual foray some of the basic characteristics of disability rights activism: the removal of architectural barriers, the refutation of the medical model in favour of the social model of disability, the engenderment of full-inclusion and community living policies, and the destruction of “better dead than disabled” stereotypes.
There is no question that these principles, these goals, on “paper,” are laudable, and their implementation long overdue. What happened in translation into a real-world working model, however, is another matter. Ironically, in their fight to “disable” limiting concepts embodied by a word like “normal,” many activists created an acceptable “norm” themselves, something I cynically call “Disability Norm.” Here is a sample:
The independent living movement has been an important part of this broader movement for disability rights. It is based on the premise that people with even the most severe disabilities should have the choice of living in the community. This can be accomplished through the creation of personal assistance services allowing an individual to manage his or her personal care, to keep a home, to have a job, go to school, worship, and otherwise participate in the life of the community. The independent living movement also advocates for the removal of architectural and transportation barriers that prevent people with disabilities from sharing fully in all aspects of our society. (emphasis mine) (http://bancroft.berkeley.edu/collections/drilm/introduction.html)
It was repeatedly pounded home to me that my daughter could neither be happy nor “representin’” lest she was in a regular classroom environment, kept away from various “fix-it” therapies and/or surgeries, and headed toward a job living in a group home run by “Community Living” (or living independently, of course), where she could “choose” how she wanted to run her life. Ultimately, disability wasn’t just “natural;” it was a god-given gift to be celebrated!! Then, of course there was the tricky issue of “live and don’t let die”… Well, at least I got the “ramp-in-front-of-my-house” part right.
The fact of the matter is that my daughter’s needs are not supported by, nor even reflected in, Disability Norm. Because her inhibitory functions were destroyed by the stroke, she can’t stand overstimulation of any sort, be it physical or emotional. She needs to be “segregated,” to an extent, in order to be most comfortable and to function optimally. Full-inclusionary practices are at best uncomfortable and at worst unsafe. Ideological activists scream that there is nothing in between complete seclusion and full inclusion. I see many realistic options in between.
The realities of her physical condition require that she be under medical supervision: shunt, g-tube, drop foot, contractures, severe scoliosis, seizures, bouts with cyclical vomiting and hyponatremia, and near-constant physical pain. Furthermore, if there were a cure for “screwed-up brain,” I would give it to my daughter, not because I don’t love her exactly as she is, but because severe disability is no celebratory matter. Disability Norm has turned its back on the medical establishment where it should have gone in full bore to inform—and hence, transform—the model to embrace the broader social implications of its technologies and ideologies.
That my daughter could live “independently” or in a “group home” is a joke, as she can’t express her needs fully, and requires full care (with specialized equipment) and 24-hour supervision to watch for her to suddenly stop breathing. The belief that every residential environment is equivalent to “warehousing” denies the reality that such environments, when optimal and necessary, can provide better staff, better stimulation, better physical therapy, and better opportunities for supervision, comfort, and safety to the severely disabled. The complete ideological abandonment of the “institution” model in favour of community living threw the baby out with the bathwater. Now, there is little incentive to rehabilitate existing institutions, and community living remains an unsafe environment, still plagued with abuse and neglect: rock and a hard place.
Disability Norm, most significantly, oversimplifies issues of life and death. In the land of severe disability, this is never a black-or-white issue. We parents of these children are often faced with awful decisions when it comes to just how far we should or should not go in treating our children when they are in crisis. (You may go visit two such individuals here and here.) Sometimes, by the grace of god, we don’t have to make the ultimate life-or-death decision, because our children die naturally, in their own time. But more often than not, we parents are left having to decide their fate. Though the intrinsic value of any human life is, to me, irrefutable (Peter Singer be damned), there can be no blanket statement about whether or not death is preferable to life with a disability. For our children, it all depends on the disability and what is transpiring in any given moment. Sadly, the lack of any presence of disability advocacy in hospitals leaves new parents of severely disabled children particularly vulnerable: when faced with only one, narrow perspective of disability, death is usually perceived as the only option. Would Disability Norm more vigorously approach, rather than run away from, the not-so-esteemed halls of the medical establishment, this would not be the case, and these issues would be painted in broader shades of grey.
Genuine advocacy and activism would account for the existence of the most extreme end of the disability spectrum. This defies the establishment of “acceptable” parameters—Disability Norms—when it comes to the treatment of individuals with disabilities. It holds true to the fundamental principle that all people with disabilities are unique, valuable human beings who have a right to live in society in a way that best accommodates them—with the understanding that sometimes, this means life outside of society, or one where “society” is delicately and gently brought to them. Such advocacy would include a vigorous dialogue with, rather than animosity toward, the medical establishment, in order to bring it up to speed on the realities of life with disability. Such activism would be informed by the very real life-and-death situations that caregivers of those severely disabled face all too regularly.
With this broadening of perspective, I would be less likely to hear the subtle whisper of “hypocrite” in my head when reading about those vigorously decrying “ableist” views and “normate” policies, all the while positing their own Disability Norm.
Absolutely right on target and eloquently stated, Claire. Even in the good olde US of A, which takes pride in all those PC words like mainstreaming and inclusion, many day habilitation programs for disabled adults are inferior to the institutional remnants they replaced. Being in the community does not mean being “in the community”!
Very well articulated. You’ve given lots of food for thought. Thank you.
Claire, one of the things that your post raises is the distinct possibility that the people who created Disability Norm are extroverts, for whom being alone and quiet is almost painful.
As a person with a high level of sensory sensitivity and an ensuing need to be able to control my environment, I’ve felt myself pressured to “join in” with things, for the sake of inclusion and community, that really don’t work for me. When I began to realize that I do best physically by spending a lot of quiet time by myself, I felt like a bit of a failure as a disability activitist. After all, I just write. (And write, and write.)
Needs like mine seem to be outside the consciousness of Disability Norm, and I’ve long wondered why. Your post has sparked a possible new answer to that question.
“the distinct possibility that the people who created Disability Norm are extroverts”
Yes, or at least they hold a sort of 1950′s conformist image of “normalcy” so that the goal
becomes creating as close an imitation of this as possible within the confines of various
handicapping conditions. Making space for true individuality, complexity and ambiguity
is, as always, far more challenging.
Phil: thanks for dropping by Rachel’s blog.
Laura: thank you.
Rachel: I think it likely goes even beyond the idea of extroversion. As you well know, traditionally (and still, sadly) people with all sorts of disabilities have either been denied access to the broader community via forced institutionalization, or more subtly, by discrimination (lack of access, perceived to be unemployable, denied access to education). I understand that this has to be countered, and sometimes vigorously. With the focus being on “look what we can do”, all the time, however, those with disabilities who actually can’t DO anything, are left behind, yet again. I just want some balance…I don’t want kids like mine to be ignored even within their own community because they aren’t able to “succeed” in the traditional sense.
A: “Making space for true individuality, complexity and ambiguity is, as always, far more challenging.” So true! And far more expensive, apparently!
Claire, I totally agree that it’s not just a question of extroversion, and that many other factors are in play. However, I do think that there’s a very great disdain in our culture for aloneness and introversion that enters in here. There is still a stigma attached to aloneness that is very damaging to people who really need to spend time away from the madding crowd.
We are made to feel that to even suggest that the Social Model doesn’t totally explain disability is somehow a dreadful heresy, but I see BB struggling with things that have nothing to do with societal discrimination (which is not to suggest that society doesn’t discriminate, because obviously it does!). I think some parents feel excluded from disability activism for this reason, because they feel activism disregards some of their daily realities.
We don’t want those articulate “Disability Norm” voices to be quietened in any way, but rather for the voices of others who don’t conform to be amplified and heard with equal clarity. From your comment, Rachel, it seems that there are many voices and many more reasons for not being heard than we even guessed.
Thank you Claire for articulating so many of my own thoughts. Thank you Rachel for allowing your blog to be used to have this conversation.
Rachel: very true. Ah, the madding crowd…
bbsmum: Love this: “We don’t want those articulate “Disability Norm” voices to be quietened in any way, but rather for the voices of others who don’t conform to be amplified and heard with equal clarity.”
NOTE TO ALL: Bill Peace of “Bad Cripple” (http://badcripple.blogspot.com/) has called me out on a line in this post, namely: “Disability Norm has turned its back on the medical establishment where it should have gone in full bore to inform—and hence, transform—the model to embrace the broader social implications of its technologies and ideologies.” Bill’s knowledge of disability history is impeccable and he made clear to me the following: “At the incipient stages of the creation of the social model activists tried to work within the medical realm…Activists today are still shut out of the medical world.” This is an important point. My perspective, however, wasn’t meant to reflect the historical reality…and this isn’t clear in the post. Sloppy is what it is. So, to clarify, my experience with the ‘net is that there is a vocal “faction”, let’s call it, of disability activists who vigorously spew anti-cure rhetoric. Some go as far as saying that therapies and treatments (some named very specifially) are “wrong” because they attempt to “change” the child/person with disabilities. I am in complete and utter disagreement with this extreme view, which, IMHO, gets far too much air time.
Claire, I agree to your point about every disabled person needing tobe seen as a unique and valuable human being, who has the right o live in society in a way that they can, which may include living outside of society or gently inside it. I used to think I needed to live in the community in order to be acceptable as a disabled person, and sometimes I still feel that way. However, I choose to live in an institutional setting and will move to a specialized workhome for autistic people this August, which means living segregated from the community in many respects. But it is the most suitable environment for me. I have never agreed that everyone should be living in the community; ideally, it should be a choice for everyone, but I think that many disabled people will choose segregation over the stimulation of community life.
I find that the whole concept of ranking disability as mild vs. severe so wrong. What is mild? What is severe? This notion assumes a strict linier measure of complex inter related symptoms and then chooses the single charichteristic “normal” people find the most anoying dharistic of people with a particular diagnosis.
My chief complaints that I sought medical help for were the physical aspects of autism. Although there are days when I cannot tie my shoes, button my shirt or hold a glass of water with out taking excessive time or care, because I have over the last 50 plus years developed my communication skills I am deemed to be “high functioning” or have “mild” autism. This is little consolation when there are days I cannot even open a jar of jam or pickles.
The same is true with other disabling conditions as well . . . a mild stroke, mild paralysis, a slight limp, a mild case of stuttering, mild Alzheimer’s, mild to moderate Parkinson’s, etc.. As long as you view disability from the limitations side of the equation, you are not accounting for potential. I whole heartedly believe that each person has burning in them a desire to accomplish and achieve, this is no less true of people with limitations no matter how severe. As long as the focus is on what a person cannot do it gives them no way out mentally, it is a form of medical abuse and gas lighting and keeps a person bound by assumed physical limits which stifle creativity and discourage the will to try new things and creatively adapt to challenges. This is the core of all human existence. What the modern day disability advocates have done is traded long term dignity of the disabled for a handful of parking spaces and permits for group homes in residential neighborhoods.
I think the one of the most moving letters I have ever read was from Helen Keller to her father where she asked him to teach her to ice skate the next time she came home. I believe when set free to do what delights and interests the human spirit can find a work around for almost any limitation.
Dan, I think that you’re right in saying that all human beings have the potential for working within severe limitations. However, this point of view necessitates a conscious redefinition of what that “potential” actually is. As long as we continue to see potential from a conventional perspective, such things as learning to ice skate, or paint, or ride horses become the only definition for meeting potential. Often, the potential of severely disabled people is about things that most typically able bodied—and even moderately disabled—people would not value at all, and can consist of physical, spiritual, and emotional experiences that most people would not even register. So it’s important to keep redefining the terms.
I also think that there is a very great value to differentiating between mild, moderate, and severe disability. The experience of people with severe disability is categorically different from that of people with mild or moderate disability. Unfortunately, these categories often place us in a hideous competition about who is suffering more, which only creates more pain rather than lessening it, but that’s a choice that people make about how to use the categories. The categories themselves are very useful, in my view, because they signal extreme differences in experience, and those differences need to be recognized and respected.
Claire, The skeptic reading this entry could note that without the disability norm many people with disabilities would not exist–as in be dead by neglect. When I was paralyzed in 1978 people with SCI above C-7-8 were allowed to die. Thousands with cognitive disabilities were pushed into institutions like the notorious Willowbrook. Although far from perfect, the disability norm has speared headed forty years of progressive legislation that empowers people with a disability. Sure the disability norm as you put is flawed, deeply flawed and overly reliant on the social model, but it has accomplished much and I for one am indebted to such efforts. Indeed I would not have aPhD if it were not for people like Ed Roberts in the USA who founded the independent living movement. I was not even legally eligible for a public school education when I was paralyzed–people like me were a fire hazard and barred from a secondary education. What we really need is a far deeper understanding cultural of disability that encompasses more than the social model. For this to happen we need to enter into a national debate about the meaning, significance, and place of disability in the broadest sense of the term in cultural context. Until that happens social change and equality will prove elusive.
Ah…the voices of dissent! I certainly did not expect everyone to agree with this post!
Bill: you are absolutely correct. In some ways I am biting the hand that has made it possible for me to care for my daughter at home with supports. It is also a fact that she may attend school and that the general surroundings are far more accessible to those using wheelchairs than was the case in the past. And many more things. I admit that it might be time to acknowledge the great work of those who preceded my daughter. It remains a fact, however, that the severely disabled population is being ignored in many discussions revolving around disability. I have a great bone to pick with Community Living, in Canada, which is a very powerful force that often represents itself as THE voice for ALL disability, all the while directing a vigorous campaign denigrating every form of accommodation that isn’t their model: group home, assisted living, full-inclusion…things that are not okay for my child and others severely disabled.
Dan: I like this line “As long as you view disability from the limitations side of the equation, you are not accounting for potential.” This is very true. However, here enters the concept of “levels of disability”. Consider the individual who cannot move her/himself in any way voluntarily, whose cognitive abilities are minimal, who is dependent upon a g-tube, a vent and full care from another person. What is the definition of “potential” there? This as opposed to say, someone with Down’s syndrome, who can live with light supports, hold a job, write, read, dress and toilet her/himself. How do you define “potential” in that case? “I believe when set free to do what delights and interests the human spirit can find a work around for almost any limitation.” In the first example, not only can that person not “do” what delights them, they cannot communicate it, if they are even aware of the world around them. And so, we are left with the ultimate question: is it what we do that makes us great, or is it how we affect others that does so? My daughter’s greatest accomplishment thus far in her life has been in the way people fall in love with her the minute they meet her. What a great gift to the world, one that is scantly recognized by the community at large, one that is preoccupied with how much it costs to keep her here on this earth.
Claire, Who is and is not “severely disabled” is subjective. No single person or political entity can speak for all people with a disability. This is part of the problem we people with a disability face politically. We have no Martin Luther King around whom we can rally. In this era of mass media sound bites this is a virtual requirement for recognition. Somehow we ned to raise out profile above and beyond antiquated stereotypes.
Bill, It’s so true and you’d think that in this techno world we could rally somehow and have our voices heard. Time for a Facebook revolution!!! I have to say that, when push comes to shove, all people with disabilities are still fundamentally invisible…or at least most people wish they were. It’s all fear based. And here is where, I guess, my own complaints about “successful crip” stories falls apart…people might be less afraid of disability if they stopped viewing it as, fundamentally, a death sentence, or worse than a death sentence. That can only come about if everyone is exposed to with people of varying disabilities functionning and “caregiver” families successfully coping.
It’s not the “successful crip” stories that get to me so much as the “supercrip” stories, in which people are portrayed only in terms of their inspiring impact upon the typically abled-bodied population. That’s where the hierarchy starts to creep in, because then you’ve got people who are seen as inspiring and those who are seen as merely pitiful. I don’t think that you could write a supercrip story about a severely autistic person, for example, unless that person happened to have some rare savant skills. But you could probably tell a “successful crip” story about that same person if you defined “success” in a way particular to the individual, and then went from there. Then you could begin to dispel fear and engender respect across the full spectrum of disability.
Amen, Rachel! Oh, by the way, Bill, I don’t agree with you that severe disability is subjective. I think one could actually come up with “objective” criteria that would define it fairly clearly.
Well done Rachel and Claire, a great reminder to all people (like myself) who preach the differently-abled view, that there are worlds out there which are entirely beyond our understanding.
I’ve tended to stay away from the extreme ends of disability because I simply can’t relate. I can’t think what I’d do or how I’d behave as a parent or as a disabled person. It’s simply beyond my grasp.
Claire – I appreciate that your daughter cannot live in an assisted living facility but at the same time a residential one will not supply that 24/7 care. Truth is the only place available is an intensive care ward where the nurses are on duty, within view, 24/7. My Grandparents both lived in excellent facilities and 24/7 does not exist even for those with the most severe impairments which they both were – 1. dementia, 2. old age and fragile.
Also, residential facilities do not protect one from abuse. Abuses run rampant from other residents and there was even the case only a year or so ago by a caregiver in London and McGuinty still refuses to regulate PSW’s. There is a current case in Switzerland in the news tonight of a Dr that has abused the handicapped (physical and mental) in residential facilities for years.
Community Living – atleast in my world – has it’s attitude that all things are not for all. They have joined another “group” and are not part of the same ideology that many belong to. My FSW has made it very clear that one model does not fit all. My son is in a self-contained classroom. She was there when I needed her, she has been there to lobby, fight and take over when I’ve had enough and spoken on my behalf (ie the battle of removing the IBI/ABA therapists from my house). Personally, they don’t pay her enough.
I also happen to know that there is residential care for adults like your daughter near I and I’m in “rural” Ont. One is currently living with her Mother and they are hoping to move her into full care shortly – met the Mother at a local village Xmas outing. Another has lived in care for years and according to his Mother is quite content where he is – again local to us and introduced by another friend. Care where there is 24/7 supervision. You may find that in these smaller groups your daughter would get more attention than in a large facilities were dollars are constantly cut and minimal support is available.
I’m simply glad we no longer live in that world. I wish there was more placement choices and I plan to join my local Community Living Board when he becomes a teenager. I wish to be proactive not reactive.
I’m blown away by the fact that I find Gavin’s candor so incredibly refreshing! I think that probably says a lot about the dull, covertly oppressive reactions that are so common in my life with my daughter when we’re out
in the world. Thank you, Gavin.
I also agree about the pernicious influences of the “supercrip” stories. Not that I don’t understand how and why they are effective. But it’s tough to come up with a simple counterbalance that is equally persuasive, unless one is speaking to the choir.
FW2: I think there are few places that can provide 24/7 supervision and yes, many severely disabled are in hospitals and long term care facilities that are not suitable because they are like hospitals instead of residences. Brantwood, once upon a time, was the top-notch place for severely disabled adults. They had it all and now, they are providing some day activities and such, but nothing permanent. Very sad. I know what went on there because the woman who works here worked there for 10 years. As for Community Living: abuse, neglect and death go on there too. Read the papers. If you cannot communicate and require full care, things are tough. Home and home-like environments are best (like L’Arche), but I am not aware of any long line of families waiting to adopt severely disabled adults.
A.: Always preaching to the choir it seems. Wonder how to reach out further to the unwashed masses!
Thank you, everyone, for participating in this great discussion!
Reading through the discussion, I remembered a statement that has impacted me greatly: “Fair is not everyone getting the same thing, fair is everyone getting what they need.” People’s needs vary, and there is no “one size fits all.” Great post, great discussion.
Excellent quote, Elizabeth, and so very true.