This post is part of a series of posts I am writing on Writing About Disabled Children.

—-

We are all storytellers. The only difference is that some of us write things down. The other difference is that some writers are also artists — able to craft a work in order that bigger ideas are suggested, open-ended, and not written as if to strike a blow to the head. In other words, it’s much more effective to create the sublime message in a work of art in order to convey an impactful message, oftentimes, than simply stating the message itself. Art is the bridge to understanding humanity.

In my last post Why Do We, As Parents, Write? (see several posts down), I mentioned that I was trying to respond to a series of self-inflicted questions. Several of the questions all have generally to do with the consequences and benefits of writing about children with the additional peril of writing about disabled children — usually children who cannot speak for themselves.

As I’ve noted, I have numerous reasons for raising these questions at this point in my four-year blogging history. Firstly, I am going through a divorce. I hesitate because the story I would tell would still be influenced by my being too close to be self-deprecating, no matter what the circumstance. I tend to think that all great memoir writing about difficult life circumstances has this element in it: the ability to see oneself and one’s on imperfections even if the action towards you was unjustified, as well as the ability to be compassionate to characters who have done unjustifiable acts. In what I believe to be interesting narrative, everyone has their reasons which leaves out judgment. To understand others and their motivations is the foundation of all good writing and formulation of interesting characters. Of course, I am, as they say, still “too close” to write about my personal life, if ever I do at all. I will likely have more interesting things to write about.  In order to tell really good stories of truth or fiction, we need to understand our perspectives and assumptions at a particular point in time. Without dissecting them, our writing and characters remain flat.

One concern I have is for my son to read what I write about him. I want him to feel that I was real and wrote about him with truth, compassion and dignity. Compassion is the key to telling true stories, I believe. I want him to think that I was a good artist who didn’t have to expose every detail, but got the bigger point across. So, I have made a commitment to him and to myself to write when I feel I can truly step away from things that are still emotionally charged. It’s not that I want to be emotionally distant – indeed my emotions are a full part of my experience and they need to be written.  It’s the manner in which I’m able to write about them that matters. It is the art and the craft of writing that can elevate a trite piece of writing to a piece that lives long after we’ve moved on.

The next issue I am having is one of revealing details about my son at this point in his development, perhaps influenced also by a divorce process (and thankfully both mom and dad are doing an excellent job as parents, still) as the vulnerable need not be made more so. This is my paranoia as his mother and I realize I am supposed to think about such things. It is my job and obligation. Even if he is resilient and strong (as we parents generally come to realize about our growing children), we are on our guard nonetheless. Writing about the vulnerable – be it children, disabled children who can’t speak for themselves, disabled adults, the aged and so forth, requires us to think much more deeply about how we write.

As I see Adam develop, my attitude has changed and softened significantly than at the time of his diagnosis. I think there is a huge urge of many parents to write about the diagnosis because there is narrative tension that is still interesting to the outsider. This is when most writing about autistic children really gets done. We read perhaps too much now (just think that a few years ago there was very little), on that D-Day or “diagnosis day.” There is a lot of interest from new parents of disabled children to relate to the pain and conflict of early diagnosis. Little is written about learning how to live with a disability in the sense that the worry dissipates. Mostly, what we read are memoirs about how parents seek to cure their children instead of learning about themselves as parents in a world that is filled with different kinds of people. Donna Williams remains the top of my list of autistic writers who not only write beautifully and artistically, but tell a story that goes beyond childhood. The tension is still there, but the story isn’t sensationalized for the sake of selling books.

Let’s face it: our lives are not like everyone else’s, which is why so many of us need to write.  “Suffering has always animated life-writing,” says Arthur Frank who has written about his own illness. Indeed that familiar theme of finding peace, a spiritual awakening, an appreciation for life itself, is a kind-of triumph-over-struggle theme that appeals to most of us in a challenging world. I think of Audre Lorde and her cancer diaries and poems that I devoured after my two cancer surgeries last year. Her honesty and artistry helped me see myself as fully human even with my stage of dwindling self-image and pain.

Yet what is especially disturbing to me is when that theme is diluted into a sugar-coated story, only telling of the good stuff — you know, how all our children are “angels” kind of rhetoric.  To my chagrin, I’m afraid that much of the “acceptance movement” has turned saccharine and in it a fear to acknowledge the challenges and the pain as well as the joys.

Conversely, when all a parent does is complain about how horrifying their disabled child is and disruptive to their lives, without qualification or deep circumspection, is equally if not even more disturbing, for we get a sense that we are not being told the whole story, or perhaps a story with a particular agenda and worse, we are being told that disabled children are a blight and burden on society thus threatening their right to exist. So in order to write a good memoir, and how we define what is good if not ethical life writing is what’s at stake here.

Frank says, with regards in how to respond to illness and disability, “what is done within the body, what happens in relationships and how existential and spiritual attitudes change – is presented as a sequence of choices. The writer’s identity becomes crucially implicated in how she or he makes these choices: a person’s responses are a measure of his or her character.” (p. 174 The Ethics of Life Writing).The stories we choose to tell and how we tell them in the case of writing about our children, is therefore an indication of our character.

Somewhere along the road to raising children, either at the time of birth or later on, our expectations were thwarted. That in and of itself has been enough to warrant many people to approach us and say, “you should write a book!” But how good of a book? To what end? What are we trying to achieve?  My soon-to-be ex husband even came to me regarding the circumstances of our divorce stated “if I were you, I would write a book about this.” What an invitation!! Not that I will necessarily take advantage of it for my own personal gain, for that is not the point here.

I did, in the past, write about many encounters with friends and family regarding discussions about autism and their reactions to Adam to which I was angry (an honest emotion), but used as illustrations of a day-in- the-life of an autistic family. I felt that these examples were especially important to illustrate how our society has been trained to react and respond, no less treat, disabled people. Those encounters in mere blog posts were enough to achieve that tension. In as far as maintaining relationships is concerned, some managed to stick by me and support the purpose of the posts, and others couldn’t handle seeing themselves within the narrative. I once received an email from a friend’s husband referring to my writing as “getting things off my chest,” thereby diminishing my feelings, our significant experiences and my writing. Yet, I write and express to get things off my chest, that’s for certain. It’s just that I hope not to sound pathetic doing it. I hope the writing transcends the individuals to illustrate the more important points –  and the point that we all have much to learn.

But isn’t that what writing, gossiping, telling stories is all about? I am making a general assumption here that all gossip is negative, which isn’t necessarily true. I will also suggest that gossip, for the most part in my view often has the sole intent of denigrating another person. So in telling true stories, intention matters.

Telling stories, it can be argued as parents of disabled children, is still important. It is especially important that we as parents write  well — truthfully and with dignity. I cannot say that I have accomplished to my satisfaction, the “writing well” part. To accomplish this, it takes great deliberation and like anything, practice. To live with disability in the family, as in any other oppressed minority group, is to also live politically whether we like it or not. This adds another sensitive dimension to our writing.

Many parents of typical children will not experience this to the same extent, if at all. For me to tell those stories during those early stages of Adam’s development were exceptionally important in navigating our way through ignorance and understanding it – my insecurity about such statements admittedly came of a place where I was also in their shoes, that is the shoes of the ignorant – completely unaware of the full extent of disability itself — meaning the community, the politics, the meaning and history of disability, the lives. Should I keep these stories to myself or do they benefit not only myself in my growth as Adam’s parent, but also others who are on the same path? Would those people still be my friends if I hadn’t of told those stories?  What is friendship anyway if we cannot be honest? Right…? (I am happy to report that the really great friends still hang around even if rigorous disagreement or debate is involved). Of this I would emphasize that the intention is important with regards to telling our stories. It might just be difficult after all, to be a writer.

In her essay, Friendship, Fiction and Memoir: Trust and Betrayal In Writing From One’s Own Life, Claudia Mills  discusses the risks of writing about one’s family and friends and seeks the meaning of friendship as her guide. Using Aristotle and Kant — “we seek the good for the other for his own sake and not our own,” (Aristotle) and “The strictest friendship requires an understanding friend who considers himself bound not to share without express permission a secret entrusted to him with anyone else,” (Kant)   –Mills painfully deliberates, as if her conscience is eating at her: “What contexts are we primae facie justified in sharing the stories of our most intimate associates with others?”

She suggests that she couldn’t have relationships if she couldn’t talk about them – that we benefit from talking about them and notes how secrecy can be “corrosive and damaging.” Yet there is a difference between talking or writing at someone else’s expense, as I said, in order to hurt them. While telling the truth may be hurtful to others, or be outright embarrassing, it is this shame that is the most costly to our peace of mind. There is nothing more liberating than living your life out in the open. But living mine out in the open does not necessarily mean I have the right to live Adam’s out in the open for him. So we must choose our vignettes and words carefully, without over-editing which also takes away from the authenticity of an interesting story. Mills takes the easier route and chooses to write fiction, even though her family and friends seem to recognize themselves in her stories.

For parents with disabled children, this writing can be a cathartic process and a way of breaking down the reductive view of our disabled children. Arthur Kleinman, in The Illness Narratives, suggests that people who are ill are reduced as people in terms of their pain and debility, or their illness. That proverbial medical view of the disabled person as a mere patient instead of a complex individual remains a part of the demoralization process. Instead, Arthur Frank turns it around. He calls his personal narrative a “remoralization process,” an act of telling a counter-story to the ones that we see all too often in the news and Hollywood and much of literary media where disabled people are used in the background like bridges to the “real” characters. In looking at narratives like Michael Berube’s Life As We Know It, and Thomas Murray’s, The Worth of A Child, and Cranes’ Aiden’s Way, among other parental narratives, Frank points out that we as parents write in order to break down the assumptions – that our writing can be “acts of justification” as we write to justify our children’s right to exist.

As I continue my writing and work to become a better, more artistic writer (I am hopeful with much more work), I am aware that to summarize Adam as a series of impairments, to finalize his character in the narration, is what the medical community already does. So I want to avoid this at all costs. “[Reflexivity] is moral work, since what’s at stake is personhood and its entitlements.” Most of us are all too aware of society’s rush to categorize our kids, to judge them, reduce them instead of viewing them as people with a right to be included in everything.

This is a great risk that we undertake as parent-writers — this act of finalizing our children, defining them  and thus imposing identity that has really not yet been fully formed.  As Frank notes about the writers of the exceptional memoirs cited above, “They resolve this dilemma, and keep a dialogue open, by refusing to say any last word about their children. The child’s future – his or her horizon of possibilities – is kept open, though this requires nothing less than redrawing the horizons of human possibility itself. These writings become teachings in the morality of respect: not principles of respect, as in Kantian respect for persons, but practices of respect, which the writing not only describes but reflexively exemplifies.”

I hope in my next post about writing about children, I will be able to compare the recent writings of Jenny McCarthy and Temple Grandin’s mother’s older book A Thorn in My Side, in order to illustrate what I consider to be problematic in the name of our children’s dignity and telling our true stories.

As for my story, it’s easier to dance around it than tell it at the moment during my set of current circumstances. I am only left with the deliberations of what and how to write next.

References:

Credit for the term “narrative tension” goes to Arthur Frank in his essay, Moral Non-Fiction: Life Writing and Children’s Disability, from The Ethics of Life Writing.
Claudia Mills, Friendship, Fiction, and Memoir: Trust and Betrayal in Writing From One’s Own Life, from The Ethics of Life Writing, edited by Paul John Eakin, New York: Cornell University Press, 2004, pp. 101-120
Ibid, p. 102 & p. 110-111.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

This month’s UTNE Reader has three superb articles on disability and design and disability and beauty. Long-time model, artist and prosthetic user (as well as designer) Aimee Mullins also writes, Prosthetic Power: Aimee Mullins redefines beauty and the body.

In this photo, Aimee is photographed with prosthetic legs which she fashioned after the hind legs of a cheetah. She runs with these legs and has a dozen pairs of differently-designed and fashionable legs, which also give her five different heights.

In the UTNE article, she discusses how she puts the legs on a table for young children to view and discuss. She asks adults to stay out of the room because “they [children] only learn to be frightened of those differences when an adult influences them to behave that way and censors that natural curiousity.” Instead of being stared at as some kind of freak, Aimee invites the children to explore. Unabashedly, they touch the legs an wiggle the toes, she explains. She says to the children “I woke up this morning and I decided I wanted to be able to jump over a house. If you could think of any animal, any superhero, any cartoon character, anything you can dream up right now, what kind of legs would you build me?” The children shouuted “Kangaroo! Frog!” and other amazing possibilities. Of this she explains, “I went from being a woman these kids would have been trained to see as disabled to somebody who had potential that their bodies didn’t have yet. Somebody who might even be super-abled. Interesting.”

As in autistic people speaking for themselves in any way or means they can, which also incites new ideas of what it means to be capable, valuable and above-all, human, Aimee raises two very important points. First, she has taken the bull-by-the-horn to invite people to explore instead of stare. The stare can be intrusive, full of, often misplaced, assumptions that the disabled person is less worthy and valuable or even capable. The stare can be overlayed with assumptions that an disfigurement is ugly.

Autistic researchers who redefine paradigms of how autistic people learn are no different than the likes of Aimee who not only redefine disability, but refuse to let non disabled or autistic people define it for them. Because Aimee’s disability is more visible, this point may be easier to absorb. Cognitive disabilities are still not understood in the same fashion.

Still, Aimee talks about becoming the architects of our identities, and this holds true for our autistic community.  As a woman who is admittedly still influenced by how I should look and behave and still tortured by it, I still have an awareness of how oppressive imposed identities have on us. She makes note how Pamela Anderson has more prosthetics in her body than she does but that “nobody [calls Pamela] disabled.”

While its true that no one calls Pamela Anderson disabled, I would argue that she is entirely disabled and entrapped in a male view of what a woman should be. We are entrapped also by what we should be as contributors to an economy, which is restricted itself in the ways people can contribute to it.  When women or any person works so hard in order to please others before themselves, they are no longer architects of their own identities, but slaves to an imposed identity.

Having visited the MIT lab when I gave a lecture there a couple of years ago now, I was a priviledged witness of astounding design for the disabled. I believe the article hits the nail on the head as it suggests that this is no longer about accepting disability or discussing potential (although it is frustrating for many of us that the question continues to swirl), but about the potential issues regarding augmentation.

In Graham Pullin’s book, Design Meets Disability, I believe we are witnessing devices and prosthetics for the disabled that are not meek and discrete, but that wears disability as fashionable as anything I’ve ever seen. And I know that MIT works with autistic people in their lab so that devices are in fact useful and empowering — not based on a model of making up for deficiency. It will be interesting, however, to see where augmentation takes us in the sense of designing humanity. Like any other kind of design, there is such potential for abuse. I would view women who augment themselves to extremes like Pamela Anderson a form of self-abuse, and I am admittedly not immune to it.

If sexiness is empowerment, I believe that Aimee is way too sexy for Pamela Anderson anyway, or for that matter, for many men equally dis-empowered by mass-media images regarding the women they are told  should be at their sides.

As a woman full of so-called flaws, can I just sneak in here that well,  I’m just too sexy for the status quo. Or at least I should, like the rest of us, keep convincing myself as such. Aimee certainly helps us all redefine beauty. And that is entirely liberating.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

The Ethics of Writing About Our Children — Part One

I’ve reached the tipping point. I no longer wish to write specifically about Adam or autism in particular because there are many other things to write about. In 1995, my husband eagerly encouraged me to start this blog and he egged me on, being my most ardent supporter and editor. It was really nice to have that kind of moral support. But now he has left and not for this reason but a general evolution have I reached a new dilemma well worth talking about.

Admittedly, for quite some time now, I’ve been uneasy with publishing his words, his accomplishments, or sharing details about Adam.  Yet it all seemed for a good cause. In pursuit of attempting to erase stigma about autism and advance opportunities for both Adam and other autistic people, I wanted to be able to tell our story from an atypical point of view. I do not think the motives were (and are still not) at all wrong. I am simply reconsidering the manner in which we write about our autistic children and how we write from the time we receive that initial diagnosis to later on in life when we have all evolved. Perhaps the manner in which we write and expose ourselves has as much to do with the manner in which autism is negatively portrayed in the media and the way we feel that the “stare” (of the disabled in our society, not to mention children) is our fundamental right.

Last week, I had posted a photo of my beautiful boy sucking on a lemon. After I had posted it, there was a corresponding sour feeling in my stomach. Something had indeed changed. While I still believe that writing memoir has a real purpose and that meaningful writing on the topic of how must be true, I needed to take the photo down. It was not because of any particular pressure (save for another ignorant comment by John Best which my son does need to be protected from – any adult who comments on a child should be banned from blogging all together in my opinion), but mostly because Adam is now of the age of self-pride and achievement. He has forged his own life and he is becoming separate from me.

This happened from the day he was born, of course. I was not just a mom gushing over her beautiful new baby. I was a mom gushing with new and exciting experience. When Adam was diagnosed with autism at the age of eighteen months, the proliferation of autobiographies and parent memoirs was overwhelming. My response was to participate in the dialogue, in my case, hoping to align more with the introspections and observations of autistic people themselves and to illustrate how I was growing as a mother understanding her autistic son.

Other authors were doing it too. I noticed the ones who were “tell-all,” stopping at nothing to protect the privacy of their autistic children, to those who were also more careful and contemplative about the need to tell an important story, what contribution that could make to the service of social justice in a world that struggles to accept those who are different.  When I first read Ralph Savarese’s book Reasonable People: A Memoir of Autism and Adoption, the tension between writing about his son D.J. or not was evident in his entire introduction. Not only does he ask the question about risking his family’s privacy, but Ralph also touches upon the notion between our autistic children and their sudden thrust into general public scrutiny by government programs, educators, testing and the like.

“…a key question remains,” writes Ralph. “Having taken such precautions with strangers, is it reasonable to invade my son’s privacy without changing his name and, thus, obviously my own and Emily’s as well? I’ve agonized over this question, believing in the end that the story of D.J.’s emergence ultimately outweighs these concerns and, as well, that writing under a pseudonym would both undermine what is irrefutably factual – namely, his emergence – and inhibit the work of activism I wish this book and its author to perform, however modestly…” (introduction).

Michael Berube in his book Life As We Know It,  eruditely discusses the dilemma of the private versus the public when our children are diagnosed with a disability. In reading his work, one can’t help understanding the “if you can’t beat ‘em, join ‘em,” phenonmena. This, I believe, is the simplest way of describing my own personal motivations for writing about autism as a response to the negative, stigmatizing, dreary way of viewing, publicizing, representing and treating disability in our culture. In my view, it is a response to a way of looking and an ignorance of how we look at things and why.

And yet, I hold my son in the highest regard. Not for the purposes of exploitation of a simple idea – that life can simply be a trite kind of  “joyful.” Such a simple description is to me another kind of exploitation, one I’ve been wrongfully accused of — in other words,  a denial of the problems, challenges and ethical dilemmas we experience on a daily basis. In writing specifically about Adam, I struggle daily with preserving his privacy and dignity, and in an Internet Age, where we are becoming aware of what evil lurks about out there, I am concerned for his safety. Such a discussion on the ethics of writing about our children as parents and the role we play, or do not play, is what I will attempt to discuss over the next couple of weeks.

In a writer’s workshop I attended a few years back, I felt certain permission when Asian-Canadian writer Wason Choy addressed the writing of memoir and family as “they know you are a writer,” so in other words, caution to them!! The proliferation of memoirs and workshops and general popularity is on the upswing. People love reading about people. We love to know that we are not the only ones out there. Yet Adam brings about a different kind of responsibility and questioning in me.

In the United Nations on the Rights of the Child, which I reviewed again today, Article 16 states, “No child shall be subjugated to the arbitrary or unlawful interference in his or her privacy, family, home or correspondence, nor to unlawful attacks on his or her reputation.”

The other week, I had quoted Gloria Steinem who wrote, “Most writers write to say something about other people  – and it doesn’t last. Good writers write to find out about themselves — and it lasts forever.”  As such, I’ve been deliberating on the content of my writing as an autism mom, divorced woman, a woman in general and the like. Where is the line between what I write as my own experience and how others are involved in my perspectives of that experience?

In The Ethics of Life Writing by Paul John Eakin, the author quotes Janet Malcom who writes, “ as everyone knows who has ever heard a piece of gossip, we do not ‘own’ the facts of our lives at all. The ownership passes out of our hands at birth, at the moment we are first observed….the concept of privacy is a sort of screen to hide the fact that almost  none is possible in a social universe.”

So perhaps the best we can do is remain analytical about the way in which we observe and represent. Alice Wexler, in her essay ‘Mapping Lives: Truth, Life Writing and DNA,’ discussed Huntington’s disease, which affected her family, and how it functioned as “a textbook stigma for proponents of the US Eugenics Movement in the early 20th century.” (Eakin). “Wexler’s polemical purpose in her memoir was ‘to show one such family, my own, from the inside, rather than as viewed through a clinical or eugenic lens.’” (Eakin, p. 11).

In the coming week, I’ll begin to look at some of the autism memoirs written by parents and continue the discussion of what may or may not be exploitative writing (even if it “positively represents” autism), or writing that continues to explore the tension and the ethical dilemmas of how we represent autism in writing.

“…recognizing that life writing in an age of DNA carries risks, Wexler,” writes Eakin, “acknowledges that the revelation of genetic identity can trigger grave social and medical consequences, including the loss of jobs and insurance. Allegiances to privacy and truth….prove to be in tension; neither stands alone, reminding us that the goods and harms in life come extricably intertwined.” (Intro).

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

There was a time when I was chastised for comparing certain persons of a certain culture in their wearing of a sign to classify them.

I know that I might give Adam something he can hand to someone one day if he cannot talk. Lots of kids where pictures on their belts so they can easily communicate to another person, or they might have one of those nifty wallet cards telling someone they are autistic. People with allergies or other medical conditions (I am not classifying autism as a medical condition) where Medicalert bracelets. So is this helpful? Or is the road to hell paved with good intentions?

What do you think?

Indonesia asks disabled pedestrians to wear signs
Transport experts said the law was preposterous. -AFP

Tue, May 26, 2009
AFP
News @ AsiaOne

JAKARTA, May 26, 2009 (AFP) – Disabled pedestrians in Indonesia are required to wear signs identifying them as handicapped under new traffic regulations passed unanimously by parliament on Tuesday.
Amendments to the Traffic and Transport Law state “handicapped pedestrians must wear special and clear signs which can be easily recognised by other road users.”

The lawmaker in charge of the committee which drafted the amendments, Ahmad Muqowam of the Islam-based United Development Party, said they were designed to protect disabled people from road accidents.

“This is a humanistic act. It’s for their safety on the streets,” he told AFP.
Asked what the signs should read or where people should wear them on their bodies, he said this was up to the government to decide at a later date. “They won’t be penalised if they flout the rule; it’s only a precaution for their safety,” he added.

Transport experts said the law was preposterous and the government should focus on providing facilities such as level footpaths and wheelchair ramps rather than requiring people to wear signs.
“It is strange when handicapped people are asked to carry extra burdens and obligations,” Institute of Transportation Studies chairman Darmaningtyas said.

Association of the Parents of Disabled Children chief Hendratmoko said: “This is a mistake. Why should our children put signs on their bodies?

“I don’t understand what’s motivated the lawmakers. They should give protection by providing facilities for the disabled. There are hardly any facilities even in a big city like Jakarta.”
Critics have complained that the amended law gives priority to car drivers over pedestrians and those using public transport, and runs counter to efforts to encourage people to take buses to alleviate pollution and traffic jams.

The Indonesian capital, a city of some 12 million people, is choked daily by traffic gridlock but there are almost no facilities for pedestrians – able-bodied or otherwise – except footbridges.
The Institute for Transportation and Development Policy has predicted that by as soon as 2014 Jakarta could experience total gridlock, where all road space is filled with barely moving vehicles.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

I know that as a parent of an autistic child, I want to see much more research on what enhances the lives of autistic individuals, not research that seeks to annihilate autism. I want research that shows how autistic people learn and what they have already contributed to the world in order that an autistic way of doing and thinking is more valued in this society.

I believe with all my heart that there is a place for Adam —  many places among us all where he will contribute greatly. I believe it so much,  I joined the Critical Disability Studies Department at York University; to help make the dialogue as prominent, if not more so, than the research funded for cures. 

I am at a university which not only has such a department that questions all status quo notions about disability, but also talks fundamentally about social justice. It is so ironic because nearby work the to “fight this terrible disease,” and across the way, a behavioural department seeking to modify undesirable autistic behaviour. It’s an interesting mix, this microcosm of the world the UNIVERSE-CITY. (University was never as subdivided as it is today. The focus used to be on studying everything so one had a universal knowledge — sort of like a renaissance-man sort of body of knowledge where one area of study would inform the other. Scholars often note the dumbing-down of a university education with areas of specialty. This is what the Critical Disability Studies Department does not do. It culls from philosophy, history, sociology, law, culture, art and more to study disability).

If you are interested in this kind research (and there are more calls for social research out there everyday), you can start at the Interagency Committee on Disability Research to start. Check out the universities as well. The more we ask, the more we may receive:

The ICDR Seeks Your Recommendations on Emerging Disability Research Topics

Web site provides opportunity to vote and prioritize disability issues of greatest concern

This year for the first time, the federally mandated Interagency Committee on Disability Research (ICDR) is utilizing an innovative Web-based approach to collect online disability research comments to assist in developing a federal disability and rehabilitation 2010 research agenda. This technology-driven approach gives the public a three-week time frame from March 27th through April 17th to submit their recommendations.

Additionally, registered participants will be invited to review all comments submitted and vote on their top ten concerns in each topic area during the one-week period from April 22nd through April 29th. Public comments from stakeholders are the focal point of the disability research recommendations in the ICDR Annual Report to the President and Congress.

All disability-related research topics are welcomed, including discussion about concerns important to the veteran and military communities. The ICDR is seeking comments with special emphasis placed in the following areas:

• Collaboration and coordination among federal agencies;
• Health information technology and/or electronic health records;
• Health disparities;
• Health promotion in the workplace;
• Employment and health; and
• Other critical research issues.

Guidelines and Instructions:

• To submit your comments and vote via the Web site you must create an account.
• If you have problems submitting comments via the Web site please either:
  • e-mail your comments to ICDRevents@cessi.net,
  • fax them to 703-442-9015, or
  • mail them to: ICDR c/o CESSI, 6858 Old Dominion Drive, Suite 250, McLean, VA 22101.
• Written comments must be:
  • No longer than 250 words or 1,500 characters
  • Single-spaced using 12-point font in Times New Roman
  • Received or postmarked by April 17, 2009 (3:00 P.M. EDT)
• Online Public Voting: April 22–29, 2009 (11:59 P.M. EDT)

About the ICDR

The ICDR is authorized by the Rehabilitation Act of 1973 (as amended) to promote overarching coordination and cooperation among federal departments and agencies conducting rehabilitation research programs and activities. Major roles of the ICDR are to identify research duplication and gaps, secure public input and compile data to inform future research, promote communication and coordination, and facilitate interagency collaboration.

The ICDR brings together agency representatives, policy makers, advocates and people with disabilities through a Senior Oversight Committee (SOC) and subcommittees. The SOC is the ICDR administrative body that spearheads interagency collaboration and research coordination. The subcommittees represent specific areas of disability research including education, disability statistics, employment, medical rehabilitation, and technology. The ICDR facilitates the exchange of information on disability and rehabilitation research programs, activities and collaborative projects among ICDR member agencies and federal partners.

For more information about the ICDR, visit the Web site: www.icdr.us.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

In the seventeenth century Spanish and Dutch ships came ashore to the new land and killed natives because they were perceived as “pests.” In 1828, The British Captain Robert Fitzroy arrived on a survey mission for the Royal Navy. Fitzroy took four natives as captive back to England to transform them into “civilized” people. “After nine months of religious schooling, [the natives] were summoned to appear at the court of King William IV and Queen Adelaide, where Fuegia Basket [a name ascribed to one of the native girls in England] was presented with a lace bonnet, a ring and a small dowry. To fulfill his goal of bringing Christianity to Tierra del Fuego, Fitzroy set sail on December 27th, 1831 on the 240-ton bark HMS Beagle with seventy-four crew members, and Anglican catechist who would establish a mission with his three converts, and a recent graduate of Cambridge, the young naturalist Charles Darwin.” (p. 90 Blessed Unrest).

As Paul Hawken writes, Darwin had only seen natives clad in “civilized” clothing up until the time he reached the New World. He did not expect to see, I imagine, Fuegians clad in seal blubber. He could barely accept that the Fuegians were members of the human race. He said, “I could not believe how wide was the difference between a savage and a civilized man: it is greater than between a domesticated and wild animal, in as much as in man there is a greater power of improvement.” (Charles Darwin, The Voyage of the Beagle: Journal of Researches into the Natural History and Geology of the Countries Visited During the Voyage of H.M.S. Beagle Round the World, New York: Modern Library, 2001. p.122).

Like most of us, Darwin’s powers of observation failed him. Darwin was, Hawken notes, surprised by the Fuegian’s ability to mimic — they could do so with language, right down to entire sentences, coughs, facial expressions. Yet, “because he could not easily distinguish words in their own native language, [Darwin] concluded that they were merely repeating a few simple phrases and thus had a very small vocabulary.” (p.91). Darwin said, “Their language does not deserve to be called articulate: Capt Cook says it is like a man clearing his throat; to which may be added another very hoarse man trying to shout & a third encouraging a horse with that peculiar noise which is made in one side of the mouth…I believe if the world was searched, no lower grade of man could be found.”

Because Darwin didn’t understand the Fuegian language, because they were not like him, he deemed them barbaric. Little did he know that Fuegian culture was ripe with “animated and nuanced conversation.” Thomas Bridges, an orphan adopted by a missionary family, “spent twenty-one years compiling a dictionary of 32,430 words and inflections [of the Fuegians], a number that was comparable to Japanese vocabulary, before accounting for Chinese and English influences. Because Bridges died in 1898, before the dictionary was completed, we are left to imagine the sum of the Yamana vocabulary. [Yamana is the Fuegian language].

“As you turn the pages of this remarkable document, you realize that there seems to be a precise word to describe every moment in their life. To appreciate the intelligence required to understand and use 32,430 words, consider that Samuel Johnson’s Dictionary of the English Language, published in 1755, contained 42,773 words. Shakespeare is credited with having used 29,066 different text words in his complete works, but in terms of truly distinct words, and disregarding overlapping usages, there are fewer than 20,000 words but will use no more than 1,500 to 2,000 over the course of the week. Half of the conversational vocabulary of an American teenager consists of fewer than forty words.” (Hawken, p.92)

Hawken’s book Blessed Unrest is about the loss of indigenous cultures, abuse of the environment, free-market fundamentalism and social justice. He notes that with the loss of a language comes the extermination of a culture.

Autistic people and the disabled community call themselves a culture, to which there has been vitriolic response from non disabled communities, namely parents and caregivers. I have to question, then, what constitutes a culture and why the self-appropriation of “autistic culture” by autistic self-advocates has become so offensive to some care-giving groups. One automatically assumes that anger is generated by a fear of loss — services, empathy, pity, perhaps. This has been the assumption by disability rights activists, after all. Yet why the contest? I personally see no reason why thousands of people who come together and self-appropriate “culture” is not just as valid for autistic people as it is with Native people, Black people, Asian people, Jewish people and so forth.

I am herein beginning to make a case for autistic culture. I am pointing out that our autistic children, privy to the same, potentially harmful assumptions that they are of lower value because they are not understood by society-at-large, are not Darwin’s children, yet, they are treated no differently in most cases than Darwin treated and referred to the Fuegians.

This will not be my complete essay on the topic. I am only suggesting that a culture, by virtue of the following definitions we’ve used to ascribe a people as a culture are:

” – a particular society at a particular time and place; ‘early Mayan civilization’
– the tastes in art and manners that are favored by a social group
– acculturation: all the knowledge and values shared by a society
– (biology) the growing of microorganisms in a nutrient medium (such as gelatin or agar); ‘the culture of cells in a Petri dish’
- the attitudes and behavior that are characteristic of a particular social group or organization; ‘the developing drug culture; “the reason that the agency is doomed to inaction has something to do with the FBI culture’
– grow in a special preparation; ‘the biologist grows microorganisms’
– the raising of plants or animals; ‘the culture of oysters’ “(Source: Wordnet)

It seems to me that autistic people, or people within the autistic culture, share these attributes. The most highly disrespected aspect to autistic culture, and perhaps the least investigated from a point of validity, is autistic language — an “agent” of autistic culture. That is, as long as we view autistic behaviour and actions as irrelevant and deviant, much like Darwin did to the Feugians, we are potentially missing a rich dynamic system and people. In a world where English is used everywhere and we are homogenizing world-wide mostly in the name of business, we will kill off indigenous cultures by the thousands. Hawken’s writes “A language dies when it is not spoken to a new generation of children. At the rate of decline we are now experiencing, half of our living cultural heritage will disappear in a single generation.” Language, many linguists state, is a distinct way of experiencing and sharing dreams, ideals, visions of life itself.

“A Western bias about belonging to a superior culture is valid only if we use selective yardsticks,” writes Hawken. “Rather than assuming people want to surrender to Western values we would be wiser to consider the loss of language as yet another indicator of worldwide collapse of ecosystems…” (Hawken, p.95).

Can we define, narrow down, or record a distinctive autistic “language?” Is autistic language and modes of expression systematized? It seems to me we have absolutely recorded many of the nuances of autistic language and behaviour — the latter which of course is a form of language. Just look at the DSM (Diagnostic Statistical Manual). Like Darwin who put on a set of glasses with a view to calling native culture “inferior,” the DSM uses similar terms of inferiority to define what autistic people and their language are not, rather than what they are. If we can observe and categorize a group of people as “deficient,” then the opposite can be true. Autistic people, like other indigenous peoples, are in and of themselves distinct — a group with their own language, behaviours, modes of expression, art and for the most part, values.

Adam’s language contains thousands of nuances, combinations and permutations — gesture, noises, words, typing, singing, and more, which I have come to understand quite well. I have not yet sat down to describe every single utterance, but as you note on this blog, I sometimes do try to record things for the sake of suggesting that his language is just as valid as mine.

I would strongly encourage everyone to consider that autistic culture is something we should cherish, not perish. Darwin’s view was that there were “higher” and “lower” kinds of people, something that autistic people can attest still exists when others define them. We don’t have to put on rose-coloured glasses to see autistic culture, we just have to consider changing the lens.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

April Fools of the month on Larry King tonight: Jenny McCarthy, Jim Carrey, Jerry Kartzinel and JB. Handley (of Generation Rescue) — yet again in the “name of autism” or to “wage a war” on it as it were, are STILL purporting their vaccine hypothesis — which, really, is no longer deserving of being in that category, since it has been disproven over and over again. The “bulking” of vaccines or the “schedule” — all of it — are, according to science, not the cause of autism. Yet science doesn’t seem to matter in all of this. People do not matter in all of this. Not the people who matter, anyway.

Jerry Lewis was recently heralded at the Academy Awards regarding his work “for” people with disabilities — a man who used these words in a recent response to criticism of his annual Muscular Dystrophy Telethon: “If it’s pity we’ll get money. . . . Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!”

Yes, a man who continuously spoke in derogatory terms about people with disabilities and dehumanized them stood proudly receiving his Oscar amidst the beautiful people at the awards. There was no mention on how the disability community for years has protested Mr. Lewis and his telethons. There was no reference to the pain and harm he has caused them. The fact that Lewis used the kids (they went from being “Jerry’s kids” to adults who turned up for those protests and were kicked out by Jerry) was veneered and forgotten with smiles and gowns. Celebrity trumps the hard work of science (when it works hard), dialogue, debate, justice and intellect. Celebrity fails to question more often than not as exhibited yet again by Jenny McCarthy and Jim Carrey.

I was somewhat relieved for a moment to see Carly, the fourteen-year-old non verbal autistic Toronto girl who types. She should have had more time on the the show along with other autistic individuals like her. I am always much more interested in hearing the perspectives about simply “being wired differently,” because it is in learning how people are wired differently where we can appreciate that people can take in the world and learn on many different planes. And if that can happen, people can also contribute to the world in different and more rewarding ways as well.

CNN has not yet taken the bull by the horn the way the CBC did in its show “Positively Autistic,” (see it on the side bar in this blog). CBC did not want non-autistic doctors talking or journalistic narration in order to trump what autistic people had to say about themselves because that was the point and it is too often overshadowed.

CNN ought to take its cue, at least from the perspective of that particular documentary, from the CBC and from autistic people. I have been thinking for so long now that as much as we have medical and health components dominating the news, we should have a show on how society views difference (which would include disability) and has medicalized people who are different from whatever norm has been established at any particular point in our history. What’s the purpose of information if we do not look at it through a variety of lenses? What’s the point of medical research if we do not apply any ethical standards or reflect continuously on what it means to be human?

I meandered the Autism Hub to see if anyone else has yet written anything on the torrid experience of watching these shameless celebrities sounding really idiotic, trying substantiate their claims with quacks who call themselves doctors, namely, the infamous Dr. Jerry Kartiznel who calls our children “soul-less.” Again, such programs revolving around “Autism Awareness Month” make me afraid.

But it’s a nervous kind of laughter. Autism Awareness Month simply reminds me every year that no matter what we do, no matter hard hard we work in trying to make people aware that autistic people are simply people, that IGNORANCE still SPEAKS loudly attempting to drown the real voices of autism.

While I am not autistic, I am a parent who will remain relentless in positioning myself against such ignorance.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

When a friend alerted me to this book by Michael Allen, I Wish My Kids Had Cancer, I had to write this post. I have to say to Allen: are you kidding? Are the publishers of this book kidding? Where has all the human decency gone? If anything goes when selling a book, a remedy, a product, what does this say of us who permit it? How far does freedom go before crossing important boundaries that we just should not cross?

I can say that I’ve witnessed a few remarkably hypocritical things blowing around me the past few months that makes me question human dignity and grace, but this is ridiculous. No parent of any child, let alone special needs child should let such a book go on sale without outrage. To me, this title is no different than to suggest how horrible it would be to raise a black child in a racist world. To suggest that the child would be better off having cancer is just insane.

My mother has had cancer twice. Cancer runs in my family. I can tell you after early stage ovarian cancer last year, that the very thought of the worst (before my official diagnosis’ and surgeries which have now rendered me fine), made last year one of the most horrifying years of my life. The thought of becoming seriously ill or dying before your time when one has a child to raise is the most scary experience I’ve ever had. I’m sure it would absolutely be worse to watch my own child go through cancer.

Speak out. Speak now, or forever hold your peace. One does not compare having an autistic child to cancer. I don’t care how tough it is.

Tough it out.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

I am catching up on my movies. After just finishing the movie Blindness, I feel disturbed at its depiction of blind people as totally incompetent, they are quarantined and incarcerated, as disabled people were not that long ago. Then, on About.com, I found this protest:

National Federation of the Blind Protests the Movie Blindness
Monday October 6, 2008
The National Federation of the Blind (NFB) announced its strong objections to the new Miramax film release Blindness, promising to protest at cinemas across the nation. The film, which opened on October 3rd, is based on a novel by author José Saramago, in which the people of city suddenly go blind as a result of a certain virus. Fearing that the mysterious blindness is contagious, the government quarantines the blinded citizens in an abandoned asylum.

The NFB claims that the film will do substantial harm to the blind. Dr. Marc Maurer, President of the National Federation of the Blind, said “Blind people in this film are portrayed as incompetent, filthy, vicious, and depraved. They are unable to do even the simplest things like dressing, bathing, and finding the bathroom. The truth is that blind people regularly do all of the same things that sighted people do.”

I admit to listening carefully, perhaps sentimentally to the the last lines in the movie — the point where Danny Glover’s voice over comments at being afraid of losing the “intimacies” from being blind — the connection, the oxymoron of seeing more when blind. It’s spoken as if once sight returns, they will all put up some sort of guard yet again and cease to connect. It’s a quaint idea. The problem is, is that it is just another stereotype, just like autistic people are all “smart” and all blind people can “see deeper” into things by virtue of some sixth sense.

It is important to also note that not one actual blind person was in the movie. I guess we begin to SEE only when we recognize that all people are the same — no matter what their disability. “We are all perfect despite our imperfections,” I said in The Autism Acceptance Project video nearly three years ago now. “We are all the same despite our differences.” Yet, we are still so very blind to accepting this fact.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

When I look at this video and of course, the recent CBC Documentary Positively Autistic (click on it on the right side bar of this blog for the actual video or go to http://www.cbc.ca/national/blog/special_feature/positively_autistic/).

I am very proud of those of us who step out and take the risks we need to take in order that we achieve a better and fair education for our children and an equal treatment from others. We work hard to try and convey the message that we need better understanding and better services across the board. And we do it all the while being called “crazy” and “unreasonable,” or we are the parents who love our “little babies now,” but we just “better wait until they grow older!” attacks. I suppose any movement that seeks to positively change things while risking out-of-the-box thinking, will result in opponents. It’s easier to stay with the status quo.

Coming from the place of diversity and Inclusion for all will advance all of that. I watched this video again, and felt it needed to be repeated.

Of course, most of us didn’t find Sawyer’s insistence that we must all be heartbroken (or continue to be) that accurate. But then again, joy, sadness, struggle — aren’t these the things that life is made of? Do we not create our own happiness? As I mentioned in the post The Metamorphosis, happiness, for me, is watching Adam grow and develop, and other unseen if not brief moments that we usually do not recognize for they come fleetingly. We just have to tune in to them.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

The Convoluted Meaning of Acceptance in 2009

Autism, like many other mental disabilities, is mostly referred to as a parent’s biggest burden and disappointment. Most of our Canadian autism organizations, wanting to be “non partisan” want to express the fear and anxiety that parents face, while also now advocating for acceptance and hope and for a better life for autistic people.

There is a benefit and a problem with advocating for both. One the one hand, it opens up new avenues for parents to consider the possibilities and rights of their child and their families to be included and acceptance regardless of disability. That can strengthen and empower families.

On the other hand, advocating acceptance, while still starving kids or giving them unsafe “treatments” is antithetical. Acceptance is not acquiescence, but does not mean subjugating autistic people to unfair and dangerous treatment such hyperbaric chambers, segregation, behavioural intervention as a sole educational method, and other unproven medical or non medical treatments. While it is encouraging as a founder of The Autism Acceptance Project to see that people really love their children, it is still puzzling why people do not understand the difference between acceptance and why the “cure” does not embrace acceptance at all. We do not accept disability, still, here in Canada and yet we don’t want to seem like bad parents. So, we get lost in the sea of language that in the end means nothing at the end of the day. We don’t want acceptance to mean nothing. We must never dilute its meaning.

Between 1870 and 1930, Western society changed their view of children from “objects of utility” to exclusively emotional and affective assets. In 1920, Canada was one of the strongest proponents of ‘mental hygiene” and eugenics. Dr. Helen MacMurchy was appointed the first chief of the Child Welfare Division of the federal department of health (Clarke). In 1917, Bertha Winn, head of Victoria’s special schools, stated the following in an address to the friends and members of the Women’s Canadian Club at Victoria’s Empress Hotel:

“The histories of thousands of these cases [of mental deficiency] reveal the tragic and pitiable fact that unless special provision is made for their custodianship earlier in life they will find their way into …crime, pauperism, vagrancy, prostitution, and general indecency…All mentally defective persons are antisocial in the sense that their presence in the community means disruption, disorder and dependency. They are the running wounds of society, infecting it and weakening its vitality, placing blight upon each succeeding generation. There is only one way to deal with this stupendous evil, and that is in checking it at its source – segregating all cases of mental defectiveness from the normal population.”

By 1925, the Legislative Assembly appointed the Royal Commission on Mental Hygiene to combat the perceived increase of mentally deficient individuals which lead to the ultimate passing of British Columbia’s Sexual Sterilization Act in 1933. It behooves us to look at our Canadian history to know that we are not innocent in the segregation, maltreatment and incarceration of disabled individuals — that it didn’t just happen in the United States and in Europe.

The lines between social and economic policy back then were blurred and mentally “deficient” children were considered an economic burden while other children were considered “priceless.” Such a comparison was made at the birth of the Dionne Quintuplets in what Mariana Valverde argued that the girls were victims of what she called “fractures in social regulation, a phrase she used to describe the processes by which social issues and problems were shifted from the expected regulatory category (such as race) to another (such as gender), depending on time, circumstance, and individual points of view.” (Clarke) Valverde argued that Ontario provincial government defined them as an economic entity and more specifically, as a resource that was to be administered to ensure the best possible revenue returns for the province (Clarke). While they were portrayed to the public as “models of childhood, in the eyes of authorities, they were no more ‘children’ than Mickey Mouse is a mouse.” While children on the one hand were sentimentalized and protected, children with mental disabilities were overshadowed by their classification as “defectives.”

In autism politics today, the virulent debates over precious children continue –many organizations argue that is an autistic child’s right to “medically necessary” ABA treatment in order that they behave less autistic — precisely because children are precious and must there be “saved from autism.” Others still refer to the blight of autistic people on society and their economic burden. If they are not saved or recovered or cured, they will continue to be disruptive and dependent. Many other autism organizations will argue that because they value and love their children, they will do anything – anything unproven and possibly dangerous – to save their children from autism. The lines between loving, valuing and accepting children, no matter what disability, and “recovery” and “cures,” as a display of love are unnervingly blurred.

It is interesting that the span of one hundred years has not changed the way we view and display our love for our children — no matter under what auspices. The same existed during the eugenics era here in Canada as well:

“Although the BC government increasingly ‘demonized’ mentally deficient children, it would be wrong to believe that they were totally dehumanized or that all members of BC society, professional or lay, agreed with and supported the authorities’ views and treatment of these children. Indeed…many mentally deficient children were dearly loved by their parents and protected by their communities. In a number of cases, individual parents and whole communities were willing to go to great lengths and expense to ensure the well being and freedom of their mentally deficient members. Equally, some doctors and school board officials openly questioned both the growing public hysteria, fueled by the rise of eugenics, relating to the supposed threat mentally deficient children presented to society and the provincial government’s policies designed to combat this ‘peril.’” (Clarke)

“In fact, some officials argued that these children did not present an imminent threat to society and that wherever possible, they should enjoy the same rights as did normal children. In other words, while many individuals, especially in the BC government, attempted to demonize children defined as mentally deficient, many others sacralized them.” (Clarke)

Terminologies such as “high grade mental deficients” or low grade were also employed during that era to determine human value. The point is, we have traversed one hundred years since the eugenics movement spread like wildfire throughout Canada – where immigrants were turned away for any mental disability, when people were sterilized, segregated and incarcerated in institutions.

Today, we are still fighting. Fighting over misunderstandings between high and low functioning classifications of people and severity and not getting much farther than we did one hundred years ago. Mentally disabled people are still being undervalued and mistreated. We must question the purpose these classifications and the identification of autistic people in general. Parents want to adore their children — as long as they are as normal as possible — and will go, in the name of love at any length to do so — no matter what the cost.

Educating, including and accommodating autistic individuals in society without the classifications and current Canadian surveillance programs is real acceptance. Parents who accept their children still go to great lengths to advocate for their children in a society that continues to put up barriers to inclusion in our schools and communities. It is still exhaustive work, and work that needs much more support than it has been given. Many of us who accept our children do not wish to be “surveiled.” We just want to live as we are in peace, and learn and contribute like everyone else.

As long as we insist on classifications, identifications for the sake of putting people in behaviour treatment and normalization programs, we have simply not evolved at all. So let’s all take a harder look at what we really mean when we accept our children, autism, and people of all disabilities.

—-

References:

Clarke, Nic. “Sacred Daemons: Exploring British Columbian Society’s Perceptions of “Mentally Deficiant” Children, 1870-1930 in BC Studies, 144 pp. 61-89.

Mariana Valverde, “Representing Childhood: The Multiple Fathers of the Dionne Quintuplets,” in Regulating Womanhood: Historical Essays on Motherhood and Sexuality, ed. Carol Smart (London: Routeledge, 1992), 119-46.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

Disability has existed since the dawn of mankind. So has autism. It’s only because autism became a distinctive “condition,” another breakdown of a minutiae of impairments, do we have a spectacle of autism stories in books and the media.

There is proof of it; disability since the dawn of mankind, that is. I know many of you heard Dr. Morton Ann Gernsbacher say it on CNN about a year ago (if you recall) and many “autism advocates” still don’t believe it. Kathy Snow and her Disability Is Natural website and articles is another one of many who has studied and espoused that disability is a natural part of human existence.

Many anthropologists have studied it — it’s not an arbitrary claim by some of us folks who believe that diversity extends to all people – not just of sexual orientation, race or religion – but also to individuals with neurological differences. Since antiquity, we have documented evidence of physical impairments. Berkson (1974, 1993), argued:

Monkey and ape groups include individuals who have fallen from trees or who have been injured by predators. [They] may survive in natural animal groups when their injury does not actually interfere with foraging or escape from predators. In other words, the injury may not be handicapping.

Injured animals may survive and live in a group because group living itself can provide aid to adaptation. Mother monkeys provide care that compensates for even severe injuries, and other members of the group… where predation pressure is low and food is plentiful, handicapped animals may live to be adults. (Berkson 1993: 5-6)

In their essay, An Institutional History of Disability,   Susan Parish and David Braddock seek to describe the history of institutional history of disability in Western society but end up at the beginning, which helps us identify ways in which disability is addressed as a social problem, that is to say, a problem in and of itself, but a problem of how society stigmatizes and thinks about disability like monoliths — over-generalizations which lead to prejudice.

As I read the chapter, I cannot help but ask what we can learn from history. Have we advanced much farther than the Middle Ages?  What does a diversity movement, a movement founded upon a need to accept everyone in an ever-complex globally connected social environment have to do with it?

The paradoxes in thinking about disability and treating the disabled are sadly thriving. Let me, for the sake of what should be a shorter blog post, and not the full-fledged essay, make a few comparisons.

The authors note that “Ancient Western notions of impairment in Greece and Rome accepted the belief that persons with congenital impairments embodied the wrath of the gods and should be killed.” (Braddock and Parish)

How many times do we believe that pain and suffering or disability, often equated with the former, is due to the fact that we have done something wrong? What about after we give birth and count our infant’s fingers and toes and “thank God” everything is okay.

“Yet this view coexisted with the fact that those who acquired their disabilities later in life were often integrated into society as workers, citizens, and soldiers. During the Middle Ages, widespread belief in demonology as an etiology of impairment was counterbalanced by religious movements preaching compassion and support towards persons with disabilities.” (Braddock and Parish)

In Sparta, infanticide was practiced on children born with deformities while in Athens, they were spared.  “Existing court records provide compelling evidence that the linkage between disability and entitlement to monetary support from the government was not absolute. Individuals with disabilities in Greece would have had to prove that they truly were economically needy and not just physically disabled to receive a small food grant.”   Men who were disabled by war were granted pensions and the status if disabled people varied.

How is this different and less complicated today? We revere the war hero but dread the disabled infant or child, at least enough to want to prevent them from being born, and this is not only true for Downs syndrome, but becoming ever more real for many other disabilities.

Yet, as in Sparta where one region prevented physical disability by killing those babies, there were others who kept disabled people among them. What might history tell us about the high rate of uninformed prevention in our society today, and the smaller rate where there are parents like Sarah Palin – a more high-profile individual anyway – would keep a disabled baby? It might be all the more reason to suggest that in terms of politics and accommodation, disability is here to stay – just like it was in Ancient Greece.

“Roman Law enumerated certain rights for people with disabilities…Justinian Code classified persons with disabilities in detail and delineated rights pertaining to different types and degrees of disability; for example, people with mental disabilities were not permitted to marry. Drawing on the Jewish discrimination between degrees of deafness (Daniels 1997), the Justinian Code identified five classes of deafness. The code became the basis of law in most European countries from the sixth to the eighteenth centuries.” (Braddock and Parish) Do we continue to divide the minutiae of differences between us to delineate one’s rights? Does not the very existence of a Diagnostic Statistical Manual promote such discrimination?

The New Testament used disability as a way to show the power of God, or Jesus, performing miracles in “healing.”  Disability is written to be caused by sin. Yet, in the same paradoxical vein, the New Testament asks society to be generous and kind towards impaired individuals while at the same time declaring “impairment was the wrath of God.” (Braddock and Parish).

Healing tales take take us down the road of autism diets and Jenny McCarthy and TACA, among others who proselytize that they have “healed” or “recovered” their autistic children with specific drugs and treatments. Healing must be, therefore, connected to demonization of the disabled, for they must be healed – they are not good the way they are. Once epilepsy, the condition McCarthy’s son is said to have, was believed to be caused by the devil himself. “Attempts to cure people with disabilities from early medieval times reflect supernatural beliefs in the abilities of magic and religious elements. For instance, Anglo-Saxons offered the following antidote to mental illness:

`A pleasant drink against insanity. Put in ale hassock, lupine, carrot, fennel, radish, betony, water-agrimony, carche, rue, wormwood, cat’s mint, elecampane, enchanter’s night-shade, wile teazle. Sing twelve Masses over the drink, and let the patient drink it. He will soon be better.  (Russell 1980:45).”

Consider this list of remedies purported for autism today:

Calcium Selenium Zinc Magnesium Iron CysteineSulfate Taurine B-12 B-6
Lysine Methionine Essential Fatty Acids Vitamin d Vitamin e Vitamin a
Vitamin c Vitamin Zinc Calcium/magnesium Probiotics Digestive
enzymes Vitamin b-6 Infrared Sauna Taurine Hyperbaric Oxygen Chamber
Melatonin Methyl-b-12 Folinic acid N-acetyl-cysteine Amino acids TMG or DMG
Coenzyme Q-10 Transfer factor Selenium Iron Chromium Multiple
vitamin/mineral N-acetyl-carnitine DMAE Silymarin 5-HTP Active
Charcoal Pantothenic acid Phosphatidylcholine Oral gamma globulin Pycnogenol
Creatine Carnosine SAMe Methyl-B-12 B-spectrum vitamins, including pantothenic acid
Qurecitin Curcumin Oregano oil Caprylic acid Olive leaf extract Garlic
Lauricidin Cod liver oil L-Arginine Oral gamma globulin Specific herbal
supplements L-Glutamine Quercitin Pyenogenol Magnezium Cucumin Niacin
Anti-inflammatory nutrients and flavonoids, including quercitin, pycnogenol & others
Lauricidin Arabinogalactan Acidophilus Bifidus Garlic Saccharomyces boulardii
Cobiotic companion L-Glutimine Lauricidin Panthothenic acid Gama OryzanolEvening
primrose oil Permeability Factors Biotin Omega-3 EFAs L0Theanine
GABA Inositol Fish oil Larginine Glutathione
Detox phases 1,2,3,4 ALA Silymarin Dimercaptosuccinic acid

The list is longer than what I’ve provided here.

The bell curved sharply for humankind at the dawn of a more modern eugenics era that lead to sterilization, incarceration and extermination of disabled people from the nineteenth century onward so let us measure these historical examples against the current concoctions and interventions for autism, and I think you’ll get my point: the paradoxical thoughts we have about disability – from hero, to mystical gift, to angel, to demon, to just plain tragedy, permeates our consciousness so much so that we have to keep studying, discussing and as with all things, shake up our thinking.

The effects of Obama becoming our first Black President, to women in high offices and now above the glass ceiling, to blind politicians and disabled leaders says it all. While we still have conflicted views about disability, diversity will prevail.

Since the dawn of mankind.

References:

Berkson, G. 1974. “Social Responses of Animals to Infants with Defects.” Pp. 239-49 in The Effect of the Infant on its Caregivers, edited by M. Lewis and L.E. Rosenblum. New York: John Wilely.

Braddock, David L., and Parish, Susan L.,  2001.“An Institutional History of Disability” in Handbook of Disability Studies, edited by Garry L. Albrecht, Katherine Delores Seelman and Michael Bury, pp. 11-68. Sage.

Edwards, M.L. 1996. The Cultural Context of Deformity in the Ancient Greek World.” Ancient History Bulletin 10: 79-92.

Russell, J.B. 1972. Witchcraft in the Middle Ages. Ithaca, NY: Cornell University Press.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it