My response to Harold Doherty on "reality"
Instead of leaving a comment in my comments section of yesterday's post on Hierarchies Within Communities, I thought it would be useful (not to put Harold Doherty in the spotlight in a negative way) to illustrate what divides many of us in the topic of disability. More importantly, I truly believe that despite these divisive areas, there are also common areas we MUST build upon, and it serves us all to find them:
Autism Reality NB said regarding my post yesterday on Hierarchies:
Unlike Ed I completely disagree.
There are not hierarchies they are distinctions used to indicate different realities and deficits faced by people on the autism SPECTRUM of disorders.
It is good that there are non verbal autistic persons in your class. Do you visit the autistic persons living in hospital wards and institutional facilities or do you just pretend they don’t exist?
My son is diagnosed with severe autistic disorder, assessed with profound developmental delays. In other words, he is severely autistic. We love him dearly and find great joy in HIM not in his autism. But he is severely autistic and it takes great arrogance for you to tell other parents how to describe their children’s realities.
You do a great disservice to the man families less fortunate than you fighting for their children.
Shame on you
My response:
Harold (Autism “Reality”)
First, the woman in my class is not autistic. I think she has cerebral palsy and would be in our society considered "severely disabled."
Second, I am not trying to create a divide in which Connor (your son) does not have full access to the things he needs to fulfill his life. I believe that all people, severe or “high-functioning” deserve to be treated with dignity and respect and have access to a variety of options, the latter of which your political ABA movement has not created for many of us. My son is non verbal and is true blue autistic. I find it difficult to engage in the comparisons you do regarding human life. As much as there is human variety since the dawn of mankind, so too may there be a variety of options and supports from which families and individuals to choose from, while also retaining their agency.
I also do not agree on the usefulness of labels to fully assign meaning, because society tends never to question its sources -- how meaning is biased and most often, outright prejudiced. Currently, there is a great SPECTRUM of perception on what "severity" means in our society, and those of us who blog about autism are more than familiar with the stumbling blocks labels create. For instance, many non verbal people are classified as severe. Helen Keller would have been classified as severe. As the saying goes, "just because I'm crazy doesn't make me stupid," which is an old joke in disability literature. In other words, just because I act funny or can't speak, doesn't mean I lack intelligence. Perhaps this might be telling of the confusion in our society over such language. Severity and illness furthermore does not depreciate the value of a human being. Yet, we've seen it time and again. Those who are strong get to live and those who are perceived and classified arbitrarily as "unfit" get to die -- the first to be deported alongside the Jews, Gypsies in France were the disabled.
Talcott Parsons in his article The Social System (The Free Press 1951) articulated the dilemma facing such groupings and labels:
"The sick role is...a mechanism by which...channels deviance so that the two most dangerous potentialities, namely group formation and successful establishment of the claim of legitimacy, are avoided. The sick are tied up, not with other deviants to form a 'subculture' of the sick but each with a group of nonsick, his personal circle, and above all, physicians. The sick thus become a statistical status and are deprived of the possibility of forming a solidarity collectively. Furthermore, to be sick is by definition to be in an undesirable state, so that it simply does not 'make sense' to assert a claim that the way to deal with the frustrating aspects of a social system is for everyone to get sick." (Zola, p. 168)
Thomas Hobbes in Leviathan, like you, saw the importance of such clarifications "seeing that truth consists in the right ordering of names in our affirmations, a man that seeks precise truth has need to remember what every name he uses stands for and to place it accordingly, or else he will find himself entangled in words as a bird in a lime of twigs: the more he struggles the more belimed." (Zola)
And yet labels turn into generalizations which turn into racism and discriminations. We all know (I would hope) that within labels, there is ever more variety which must make us question the purpose of such labels at all. Today the reality is if you are labeled as severe, you may be written off and not offered the opportunities and assistance you rightfully deserve. You will be a client of someone who decides for you, who may not be patient in providing you whatever it takes for you to maintain some control over your life, and you will likely be denied the medical treatment you are entitled to.
By helping to change the perceptions of people with disabilities we might take a giant step in order to achieve the programs, services, and accommodations and entitlements our children will require throughout their lifetimes that are also socially just.
To remain contentious and closed off to the disability community about the variety of issues, that in REALITY do EXIST and who have experienced injustices in their lifetimes, in such recent history, and then to just write them off as easily as you attempt to in order to achieve your political ends, is mind-baffling. It ignores a reality of a dialogue that has existed since before our own involvement as parents and before our children were born.
I will also not defend myself with your accusation that I do or do not visit autistic people in hospital wards or institutions (where are those institutions in Canada, by the way? Also, I will avoid to ask you the same question in reverse for fear of appearing like John McCain). Many of my colleagues who work in a variety of centers, who provide various services (including ABA), and who share their knowledge and experience with me, have taught me that it requires a lot of effort to listen to all views, and that issues are complex. Our worst mistake would be to discount and deny the factors that do alter the lives of those with real medical issues and pain that accompany some people with and without disabilities. But let me ask you, do you find intestines beautiful (as I attempted to describe in the post on Humbaba) or how about sutures that keep the body shut -- what do our cringes and winces say of our views about ugly/beautiful and perhaps what we fear? How does this effect the way we look at disabled people?
As for personal accusations and assumptions about me, I don't see how they forward the dialogue at all. Again, let's not become a US political campaign. As a mom who loves her son above all else in the world, and who carries the same concerns as most of you reading this, such tactics, and often, outright lies about anyone's character remains sickening and seeks to divert attention and take time away from the real issues, which both adults and our children cannot afford.
This is what I wish to say: The most important thing we can do is to keep our options open, change negative attitudes towards disability, and to recognize that disability has been contextualized abundantly in the medical model that therefore puts those who are disabled in a more vulnerable position rather than one of agency. It has put them in positions where their rights have been literally taken from them. The medical model has sought to label and define people rather than allowing them to define themselves. To this end by making such occurrences outright apparent, many disabled people can and will add a new dimension to the types of service and the ways in which our families and our children are treated and viewed in society. Namely, the disabled have a right to define their identities, their culture, and there is a reason why pride movements have taken place for populations that have been oppressed. In a world that embraces diversity, the disabled are still left out of the loop.
In the words of Irving Zola,
“Call a person sick or crazy and all their behavior becomes dismissible. Because someone has been labeled ill, all their activity and beliefs -- past, present and future become related to and explainable in terms of their illness. Once this occurs, society can deny the validity of anything which they might say, do or stand for. Being seen as the object of medical treatment evokes the image of many ascribed traits, such as weakness, helplessness, dependency, regressiveness, abnormality of appearance and depreciation.” (article cited below)
I like to think that most parents would want to value their children, even if we have differing perceptions about our lives. All those perceptions and experiences are valid and everyone needs to be educated about all of them before they make decisions about who is to be born and not to be born.
I am the type of person who chooses to take a certain path because one of depression and pathology does not empower my son or myself. This has been my choice that I feel is best for our family. I do not believe that to obscure disability, even when it accompanies illness and pain, is a way to improve a wanting system, either. Disability isn’t a dirty word, and neurodiversity isn’t a denial of the challenges inherent in disability – medical in some cases, and yet always a construct of social whim and perception. This is what you seem to consistently accuse me, and others in support of social justice of, Harold, – this denial of the challenges of autism. You may agree with DeFelice who cautioned in a Newsweek article titled A Crippled Child Grows Up, (November 3, 1986, p.13), "The disabled movement has purchased political visibility at the price of physical invisibility. The crippled and lame had bodies, but the handicapped, or so the social workers say, are just a little late at the starting gate. I don't like that. It's banal. When we speak in metaphorical terms, we deny physical reality. The farther we get from our bodies, the more removed we are from the body politic..." (Zola, p.170.) Those you have classified as part of a neurodiversity movement, or disability rights movement, do not deny the challenges of the disability called autism for it would be a negation of the autistic self. Therefore, I do not separate Adam and autism. I do not bemoan autism or our existence with our autistic son. "Thus, biology may not determine our destiny: but, as with women, our physical, mental and biological differences are certainly part of that destiny." (Zola)
For those who do wish to separate autism and the person as is typical to separating illness from the person (as if it's a nasty thing to do as to debase one's character) to achieve political ends, allow me to ask: what have those doom and gloom marketing tactics of our Canadian ABA movement, or an anti-vaccine movement really achieved other than to ignore millions of disabled voices? What does it serve for a mother to insinuate that all autistic people are aggressive and dangerous so that others get voted out of class? What does making autistic people appear ill and in need of "fixing" or "unable" achieving in the name of being included and supported in society? What has this type of advocacy achieved for my son Adam who would otherwise be excluded from programs without my determination, support, and will, even when I feel exhausted to justify his existence as a real, living, and vital human being, capable of achieving and contributing in his own way if only given a chance? Are you trying to place blame on the way I choose to view our lives for the reason you are not receiving the ABA services you want? I am not to blame for that. Do you really believe I have that much power? Should I be flattered or is this just scapegoating? I'm just yet another valid voice who also deserves to be heard and who deserves to learn and to take part in this important movement. No, not shame on me. You do not have the right to silence me.
Pride, joy and a determination to move on in a world that otherwise gazes, is fascinated with, remains at arms length and thus negates the existence of our children and our families, will hopefully lead to a new era where disabled people have the most insight into the way others as well as accommodations can support our children and take the stress off many families.
Finally in the words of Nancy Mairs:
“First in the manner of semantics, I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are handicapped and disabled. I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering. People – crippled or not – wince at the word cripple, as they do not at handicapped or disabled. Perhaps I want them to wince, I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind to, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.” (On Being A Cripple)
I guess real acceptance of the gray and complex area is difficult for some people enough to want to simplify the issues at hand and stake their claim on some kind of "reality." But this mom will never give up. Nor will I ever take my outreached hand away from you or any other person who disagrees with me. I credit my son Adam for making me want to keep trying.
Source: Zola, Irving. (1993) Self, Identity and the naming question: reflections on language of disability. Social Science and Medicine, 2, pp. 167-173
Autism Reality NB said regarding my post yesterday on Hierarchies:
Unlike Ed I completely disagree.
There are not hierarchies they are distinctions used to indicate different realities and deficits faced by people on the autism SPECTRUM of disorders.
It is good that there are non verbal autistic persons in your class. Do you visit the autistic persons living in hospital wards and institutional facilities or do you just pretend they don’t exist?
My son is diagnosed with severe autistic disorder, assessed with profound developmental delays. In other words, he is severely autistic. We love him dearly and find great joy in HIM not in his autism. But he is severely autistic and it takes great arrogance for you to tell other parents how to describe their children’s realities.
You do a great disservice to the man families less fortunate than you fighting for their children.
Shame on you
My response:
Harold (Autism “Reality”)
First, the woman in my class is not autistic. I think she has cerebral palsy and would be in our society considered "severely disabled."
Second, I am not trying to create a divide in which Connor (your son) does not have full access to the things he needs to fulfill his life. I believe that all people, severe or “high-functioning” deserve to be treated with dignity and respect and have access to a variety of options, the latter of which your political ABA movement has not created for many of us. My son is non verbal and is true blue autistic. I find it difficult to engage in the comparisons you do regarding human life. As much as there is human variety since the dawn of mankind, so too may there be a variety of options and supports from which families and individuals to choose from, while also retaining their agency.
I also do not agree on the usefulness of labels to fully assign meaning, because society tends never to question its sources -- how meaning is biased and most often, outright prejudiced. Currently, there is a great SPECTRUM of perception on what "severity" means in our society, and those of us who blog about autism are more than familiar with the stumbling blocks labels create. For instance, many non verbal people are classified as severe. Helen Keller would have been classified as severe. As the saying goes, "just because I'm crazy doesn't make me stupid," which is an old joke in disability literature. In other words, just because I act funny or can't speak, doesn't mean I lack intelligence. Perhaps this might be telling of the confusion in our society over such language. Severity and illness furthermore does not depreciate the value of a human being. Yet, we've seen it time and again. Those who are strong get to live and those who are perceived and classified arbitrarily as "unfit" get to die -- the first to be deported alongside the Jews, Gypsies in France were the disabled.
Talcott Parsons in his article The Social System (The Free Press 1951) articulated the dilemma facing such groupings and labels:
"The sick role is...a mechanism by which...channels deviance so that the two most dangerous potentialities, namely group formation and successful establishment of the claim of legitimacy, are avoided. The sick are tied up, not with other deviants to form a 'subculture' of the sick but each with a group of nonsick, his personal circle, and above all, physicians. The sick thus become a statistical status and are deprived of the possibility of forming a solidarity collectively. Furthermore, to be sick is by definition to be in an undesirable state, so that it simply does not 'make sense' to assert a claim that the way to deal with the frustrating aspects of a social system is for everyone to get sick." (Zola, p. 168)
Thomas Hobbes in Leviathan, like you, saw the importance of such clarifications "seeing that truth consists in the right ordering of names in our affirmations, a man that seeks precise truth has need to remember what every name he uses stands for and to place it accordingly, or else he will find himself entangled in words as a bird in a lime of twigs: the more he struggles the more belimed." (Zola)
And yet labels turn into generalizations which turn into racism and discriminations. We all know (I would hope) that within labels, there is ever more variety which must make us question the purpose of such labels at all. Today the reality is if you are labeled as severe, you may be written off and not offered the opportunities and assistance you rightfully deserve. You will be a client of someone who decides for you, who may not be patient in providing you whatever it takes for you to maintain some control over your life, and you will likely be denied the medical treatment you are entitled to.
By helping to change the perceptions of people with disabilities we might take a giant step in order to achieve the programs, services, and accommodations and entitlements our children will require throughout their lifetimes that are also socially just.
To remain contentious and closed off to the disability community about the variety of issues, that in REALITY do EXIST and who have experienced injustices in their lifetimes, in such recent history, and then to just write them off as easily as you attempt to in order to achieve your political ends, is mind-baffling. It ignores a reality of a dialogue that has existed since before our own involvement as parents and before our children were born.
I will also not defend myself with your accusation that I do or do not visit autistic people in hospital wards or institutions (where are those institutions in Canada, by the way? Also, I will avoid to ask you the same question in reverse for fear of appearing like John McCain). Many of my colleagues who work in a variety of centers, who provide various services (including ABA), and who share their knowledge and experience with me, have taught me that it requires a lot of effort to listen to all views, and that issues are complex. Our worst mistake would be to discount and deny the factors that do alter the lives of those with real medical issues and pain that accompany some people with and without disabilities. But let me ask you, do you find intestines beautiful (as I attempted to describe in the post on Humbaba) or how about sutures that keep the body shut -- what do our cringes and winces say of our views about ugly/beautiful and perhaps what we fear? How does this effect the way we look at disabled people?
As for personal accusations and assumptions about me, I don't see how they forward the dialogue at all. Again, let's not become a US political campaign. As a mom who loves her son above all else in the world, and who carries the same concerns as most of you reading this, such tactics, and often, outright lies about anyone's character remains sickening and seeks to divert attention and take time away from the real issues, which both adults and our children cannot afford.
This is what I wish to say: The most important thing we can do is to keep our options open, change negative attitudes towards disability, and to recognize that disability has been contextualized abundantly in the medical model that therefore puts those who are disabled in a more vulnerable position rather than one of agency. It has put them in positions where their rights have been literally taken from them. The medical model has sought to label and define people rather than allowing them to define themselves. To this end by making such occurrences outright apparent, many disabled people can and will add a new dimension to the types of service and the ways in which our families and our children are treated and viewed in society. Namely, the disabled have a right to define their identities, their culture, and there is a reason why pride movements have taken place for populations that have been oppressed. In a world that embraces diversity, the disabled are still left out of the loop.
In the words of Irving Zola,
“Call a person sick or crazy and all their behavior becomes dismissible. Because someone has been labeled ill, all their activity and beliefs -- past, present and future become related to and explainable in terms of their illness. Once this occurs, society can deny the validity of anything which they might say, do or stand for. Being seen as the object of medical treatment evokes the image of many ascribed traits, such as weakness, helplessness, dependency, regressiveness, abnormality of appearance and depreciation.” (article cited below)
I like to think that most parents would want to value their children, even if we have differing perceptions about our lives. All those perceptions and experiences are valid and everyone needs to be educated about all of them before they make decisions about who is to be born and not to be born.
I am the type of person who chooses to take a certain path because one of depression and pathology does not empower my son or myself. This has been my choice that I feel is best for our family. I do not believe that to obscure disability, even when it accompanies illness and pain, is a way to improve a wanting system, either. Disability isn’t a dirty word, and neurodiversity isn’t a denial of the challenges inherent in disability – medical in some cases, and yet always a construct of social whim and perception. This is what you seem to consistently accuse me, and others in support of social justice of, Harold, – this denial of the challenges of autism. You may agree with DeFelice who cautioned in a Newsweek article titled A Crippled Child Grows Up, (November 3, 1986, p.13), "The disabled movement has purchased political visibility at the price of physical invisibility. The crippled and lame had bodies, but the handicapped, or so the social workers say, are just a little late at the starting gate. I don't like that. It's banal. When we speak in metaphorical terms, we deny physical reality. The farther we get from our bodies, the more removed we are from the body politic..." (Zola, p.170.) Those you have classified as part of a neurodiversity movement, or disability rights movement, do not deny the challenges of the disability called autism for it would be a negation of the autistic self. Therefore, I do not separate Adam and autism. I do not bemoan autism or our existence with our autistic son. "Thus, biology may not determine our destiny: but, as with women, our physical, mental and biological differences are certainly part of that destiny." (Zola)
For those who do wish to separate autism and the person as is typical to separating illness from the person (as if it's a nasty thing to do as to debase one's character) to achieve political ends, allow me to ask: what have those doom and gloom marketing tactics of our Canadian ABA movement, or an anti-vaccine movement really achieved other than to ignore millions of disabled voices? What does it serve for a mother to insinuate that all autistic people are aggressive and dangerous so that others get voted out of class? What does making autistic people appear ill and in need of "fixing" or "unable" achieving in the name of being included and supported in society? What has this type of advocacy achieved for my son Adam who would otherwise be excluded from programs without my determination, support, and will, even when I feel exhausted to justify his existence as a real, living, and vital human being, capable of achieving and contributing in his own way if only given a chance? Are you trying to place blame on the way I choose to view our lives for the reason you are not receiving the ABA services you want? I am not to blame for that. Do you really believe I have that much power? Should I be flattered or is this just scapegoating? I'm just yet another valid voice who also deserves to be heard and who deserves to learn and to take part in this important movement. No, not shame on me. You do not have the right to silence me.
Pride, joy and a determination to move on in a world that otherwise gazes, is fascinated with, remains at arms length and thus negates the existence of our children and our families, will hopefully lead to a new era where disabled people have the most insight into the way others as well as accommodations can support our children and take the stress off many families.
Finally in the words of Nancy Mairs:
“First in the manner of semantics, I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are handicapped and disabled. I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering. People – crippled or not – wince at the word cripple, as they do not at handicapped or disabled. Perhaps I want them to wince, I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind to, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.” (On Being A Cripple)
I guess real acceptance of the gray and complex area is difficult for some people enough to want to simplify the issues at hand and stake their claim on some kind of "reality." But this mom will never give up. Nor will I ever take my outreached hand away from you or any other person who disagrees with me. I credit my son Adam for making me want to keep trying.
Source: Zola, Irving. (1993) Self, Identity and the naming question: reflections on language of disability. Social Science and Medicine, 2, pp. 167-173
22 Comments:
Standing ovation!!!! Well said.
S.
Wonderful Estee. I hope this will give Harold something to think deeply about.
Nicely countered Estee!
I do have to point out that there are insititutions in Canada that are still home to autistic people. A new one has recently been built in Nova Scotia that will (ware)house people with a variety of special needs- I know of 2 autistic people there and another 6 in an insititution in the Annapolis Valley of NS. This says nothing about autism of course, just about the values of our community- but worth noting anyway.
-Mike
Estee, this is a wonderful post. I really enjoyed it. Harold probably wouldn't.
Perhaps I'm overinterpreting and not all that perceptive, but Harold's comment didn't seem at all sincere. That is, it wasn't a serious comment, merely there for effect. I don't recall when I first thought that Harold had a game plan, which included bashing opponents who might be in the way of said game plan and any of us who want to improve future conditions for our offspring are definitely in the way. Harold doesn't care particularly what we do or do not believe in, because his goal is simple enough - Connor to an institution, as soon as is practicable. Maybe that's reasonable, though given the number of lies, half truths and pure humbug that Harold routinely indulges in, I wouldn't automatically believe the 'severely autistic' label he assigns to Connor. Apparently his original diagnosis was PDDNOS. Not that a label means much, as we all know. However, Harold bears watching, because his dream rests on persuading governments to spend an awful lot of money and provoking fear and disgust of the disabled is one way ro do that. He needs to beef up the sincerity factor though. Lately, his homilies have sounded downright tinny.
i join farmwifetwo in the standing ovation!
Thanks, Mike. Always something to learn about. I have not done extensive research into institutionalization in Canada. During my studies, I will likely get into that area.
In Ontario, I've visited many autistic people in "centres," which may be sort of nicer versions (if that's the right word) of "traditional" institutions -- the ones that have been described as prisons and within which "clients" say they felt "incarcerated."
I have, however, been very much exposed to ABA advocates who used to insist that ABA would prevent institutionalization or had used it as a marketing tool to advance the ABA/IBI supports here in Canada. I do recall some parents, whose children were more verbal and had more skills at the time than my son, insisting that their autistic child would be "institutionalized." This was when our children were in preschool. That was the age of just over 2 here in Ontario.
Perhaps some of our centres are made up pretty with "art programs," and sponsored kitchens from some hardware supplier, but I am curious to really understand if the treatment of individuals subjugated within those walls is vastly different in this day and age. I cringe to think of the Judge Rotenberg Center, if that's any example. I assume it will vary from place to place.
I am not "down with" assistance, assisted living, homes, etc. I am not saying that certain people may not need or do not deserve certain supports throughout, or at various points, of their lives. But it deserves scrutiny and further investigation on the way people who live within them participate, who is in authority, and how authority gets "dispensed," which is usually from the top, down.
I think it is rich that Harold disagrees with Ed, who has spent years in an institution and then goes on to act like he knows more about "reality" than Ed.
"Do you visit the autistic persons living in hospital wards and institutional facilities or do you just pretend they don’t exist?"
Harold, I'll take someone's word who has actually spent years in those institutions you can only reference by asking if someone has visited.
If Harold is so concerned about institutions and how the real "reality is", perhaps he could talk to Ed about it but that won't happen because Harold uses disabled people as a tool to make him seem like an authority, he has no interest in talking to people like Ed because he thinks people like Ed are non persons.
Over here at this Children's Hospital they prefer the "You're child will be a failure threats" and after we left, I heard rumours they have also been know to call in CAS to force you to stay in their program.
I got quite the grilling on my piss poor parenting and how I didn't know how to raise a child with ASD at our final meeting, which was not held here but at Comm. Living offices. AND THEN, the Sr T still tried to get access to me and mine without my FSW at my house. She was refused access. Without my FSW from Community Living... I don't even want to think of the other possible outcomes.
I admit I have thought about framing my "release" letter I finally got a year later :)
I admit I thought they might be right even as my little boy proved time and time again that removing him from that program best choice for him.
People like Harold/anti-vaxxers etc aren't fighting for services. They have their own agendas.
The word is CHOICE. CHOICE for each and every family is different. My FSW (25+yrs with Community Living) will be the first to tell you that, and she works hard for EACH family and never thinks for a moment, that what I need or what is what you need or want for yours.
He's also envious of those that have pulled our children out of these programs and had huge successes. Can't help him there, he'll just have to get over it.
S - turned into an essay :)
I'll assume your hand is still not outstretched to my kid when he bites himself until he bleeds. That would detract from your notion of celebrating autism too much, huh?
Hypocrite.
Harold's problem (well, at least *one* of his problems) is that he insists on repeating claims about autistic self-advocates and their allies that he knows damn well are not true. That has seriously eroded his credibility.
He claims that we pretend that severely handicapped autistic people, and the handicaps they struggle with, don't exist.
That would be very odd of both you and me, considering that we both serve on the board of directors of the Autism National Committee (http://www.autcom.org), which has historically (since its inception in 1990) focused on advancing the human and civil rights and access to means of reliable communication of severely handicapped autistic people.
AutCom's board and membership spans the entire spectrum (and all of North America) these days -- and well it should, because quite the opposite of what Harold keeps repeating, the civil and human rights and access to communication of *all* people on the spectrum, regardless of severity of handicap, are important to all of us. Those of us on the AutCom board who have, or who have children who have, so-called "high functioning" forms of autism, are every bit as engaged in those goals as they pertain to severely handicapped autistic people, as those on our board who have, or who have children who have, such handicaps.
AutCom works to create, and to educate individuals, families, and professionals about, non-institutional *alternatives* to the hospital wards and institutional facilities Harold speaks of.
Better to help people *out* of institutions, than just to visit them there.
Ask Larry Bissonnette, one of the autistic artists whose work Estee featured in TAAP's 2006 exhibition at the Lonsdale Gallery in Toronto, about deinstitutionalization. It has made a night-and-day difference in his life.
And it's not just vague verbiage about human rights. Access to communication is a critical part of the equation.
Harold would do well, if he isn't doing so already, to be working with Conor to help him establish and gain fluency in an expressive communication medium in which his own voice will be heard, acknowledged, and respected. That medium might be keyboarding, sign language, picture-books or -cards, or any combination.
That establishment of a reliable, acknowledged, and respected expressive communication medium opens so many doors -- to education, to family and social connectedness, to emotional well-being -- and steers one clear of so many pitfalls -- from inferior medical care, to abuse, to maladaptive behavior engaged in when no other alternative existed to stop or mitigate something undesirable, and consequences thereof.
There is no reason that activity towards establishment of such an expressive communication medium cannot coexist with educational interventions. In fact, well-designed educational interventions should be *leveraging* and *integrating* such activity.
The bottom line is that there is no reason that Harold should be spending so much of his energy fighting us, instead of working with us. The latter would benefit Conor so much more. And when Conor grows older, Harold, and develops the ability to read what you have written and invested your energy into (and surely you want Conor to attain such growth and development, don't you?), working positively with us, instead of negatively against us, will speak volumes to him about what you really think and feel deep down inside.
Oh, wait. I thought Sam was doing so well on chelation via ALA, John, that he doesn't do that any more.
A serious response to John: our hand is indeed outstretched to kids who do that -- Sam, too, of course, if that's true of him.
In addition to finding a "quick fix" to stop destructive behavior like that here and now, the critical thing for the long haul is to get him to the point where *he can tell us* what is driving him to do stuff like that. If he's doing it to mask or distract himself from some other pain, we want *him* eventually to be able to point to or say or type or sign what it is that hurts. If he's doing it because his pain threshold is such that biting himself actually feels good, then getting him to the point where he can communicate will let us work with him to find a less maladaptive alternative.
Yes, it takes time to develop enough communication skills to take this approach. There may be "quick fixes" that will get him to stop here and now. But you not only want to solve the immediate problem, you want to invest in what will do him good for the length of a lifespan. So the answer is to do both.
Phil,
I don't need any answers from you but it would be nice if you could advise a couple of your young Autcom spokesmodels to refer to themselves as having Asperger's so people don't get the wrong idea and think their brand of "autism" has anything in common with what those with LFA endure.
And yes, Sam is doing quite well thanks to ALA, speaking and less biting.
Ms Klar-Wolfond
Unlike you, as set out in your response, I made no personal assumptions about you at all. I commented on your silly remarks about hierarchies. I stand by my comments. Your "thesis" is simple nonsense. The immature attacks made by phil schwartz, Alyric and Kev do nothing to change that fact.
I am sure that the next parent who has to lose their autistic child because they can no longer care for them at home will not be interested in your silly musings about hierarchies.
Great post Estee or, As another Zola wrote 110 years ago:
“…I have but one passion: to enlighten those who have been kept in the dark, in the name of humanity which has suffered so much and is entitled to happiness. My fiery protest is simply the cry of my very soul. Let them dare, then, to bring me before a court of law and let the enquiry take place in broad daylight! I am waiting.
With my deepest respect, Sir".
Émile Zola, 13th January 1898
Harold, my name is Estee. You do not have to revert to the formalities you usually do on everyone's comment boxes.
Words like "silly" "fortunate" and so forth are judgment words and assumptions, be they true or false, they do not belong in a discussion regarding the future of our children if we are to move forward. Since you do not offer anything to the debate but accusations and defensiveness without actual fact and rigour, it makes me assume you have no interest in a discussion to better the world for autistic people where their views, and alternate views from yours, are welcome.
Foresam, I'm not sure I'm so glad to see your same words repeated over and over again, AGAIN without any intellectual dialogue. Now what I say is not an assumption. You like to fabricate things. You have inserted my name in the comments box of your blog and falsified comments (as if they were coming from me and they were not) and you have fabricated facts about my life (for instance, I am not a teacher). If you would like to meet me in a court of law, I would be more than happy.
One thing I left out John/Foresam: Since you have fabricated so many lies about me which I can testify to, what must I/we all assume you have also fabricated?
Also Forsam,
I have been witness to Autcom and Autreat participants and no, they are not all Aspergers. Again, be wary of assumptions.
I will not publish any more character-bashing comments, if you create a reasonable argument that others do not agree with in the spirit of moving forward, I will publish them. The autism world has had too much of this nonsense and it hurts too many people. While we may become just as passionate regarding our feelings in a well-crafted argument, I see it fit to ask people to stick with the facts, and if people have assumptions and speculations, to make them apparent that they are not backed up with facts, please.
For the record, AutCom's board has members from all points on the spectrum, as does its rank-and-file. None of them misrepresent the nature of their autism, as John falsely alleges.
Sam- for the record, when my son spent a few years eating himself as well as attacking everyone in sight and destroying anything he could get his hands (or mouth) on, it was exactly people like Estee who were the most helpful, loving, and welcoming to him. We certainly had very different experiences with people who had different beliefs about autism than our family does, and only cared about "curing" our kids.
Jen,
Your comment comes at the right moment for me. Yesterday we had a terrible day. I had enrolled Adam in swimming and in trampolining and IN BOTH INSTANCES, right in front of Adam, was he rejected (he is an excellent swimmer but he was having one of those days where he wasn't listening well and was really distracted by all the toys around the pool. Adam typically needs 2-3 times in a setting and then he can do just fine. He was at the same pool last year and I think he just got so excited to be back).
I am trying to ensure that he be included with all kinds of kids, yet the world expects him to be like everyone else -- most young instructors do not understand how he learns or his challenges and arrogantly write me off because I am, of course, "just a mom."
In no way was he accommodated, yesterday. In fact, the trampolining place (the fellow I had met at Adam's birthday suggested that he would love to teach him) actually said in front of Adam, "we've never had anyone so severely disabled like him before." He treated Adam like "something was wrong with him," and while I suggested I could help, the instructor said, "I've had eight years of experience with autistic kids." Hmmm. When someone says that to me, I do admit I'm afraid and get my back up. It was also the tone in which he said it because he was basically telling me to bugger off. The point is, did he have the right to treat Adam like that after having expressed an interest in teaching him and further, did he have the right to say that right in front of a child? A very similar thing happened a few hours later in swim class where the seventeen year old instructor said, "I don't want him," right in front of Adam.
It's a good dose of reality again about what people perceive to be severe, and by no means am I undermining severe disabilities, either. As I continue to ramble here, this happened because I was being Adam's "shadow" (at the trampoline place) and breaking down the steps (he has been motorically-challenged so breaking down bodily movement is better for him and he then gets it). I was told I was a "liability" in being there (accidents can happen) even though I was on the far edge of the trampoline. I am saddened and enraged by how we were treated yesterday, and like all parents otu there, I do not think the world gets how autistic individuals and their families (or people with any other disability for that matter) are treated on a pretty much regular basis. But tomorrow, I will call and ask how we can best accommodate him, for if I do not and just "storm out" then what good will that do anyone? What did anyone learn from us? Will they just get more defensive and reject the next autistic kid that comes through their doors? I do not wish for that to happen.
It's heartbreaking, exhausting and yet if we are to move forward, we have to teach others what it means to have a disability, and what it means to accommodate, and why it's a disabled person's right to be taught. It's really not that hard when everyone tries. In some cases, people need more one-to-one, but the implication that Adam is to be segregated (which these young people had the nerve to also suggest) is not my choice for him. I have, however, put him into other places where he is in settings with individuals with more severe disabilities. It is definitely NOT that I don't want him with other disabled people. I just want the option of everyone being together, because he does best that way.
If we lived in an inclusive world, this would just happen. Those without a disability would understand what can be gained from teaching and understanding others with more challenges. We all have to understand what we have to gain and learn from each other.
So tomorrow (more ramble, no structure here) I will make my calls. I will try again. I will try to be a teacher and set an example if I have to, even when I feel like everyone's looking at me like an idiot or a crazy mom.
Also (more rambling) I really don't know how I would handle it if Adam bit himself. I don't think the simple answer is just in a cure, though. And I do not wish to undermine the challenges that others have.
Estee- I am so sorry that you and Adam had such a horrendous experience the other day- that is always such a huge slap in the face when it happens. I do think that you just take a deep breath, maybe have some good hugging time and playing with him, and then go about solving the problem...there's no other way to do it, I don't think. Give him a hug for me too (and one for yourself).
But it is the work that's being done right now by people like you, and hundreds and thousands of other parents and professionals that is making a difference, even outside the "autism world". 20 years ago there really wouldn't have been a choice to take our children to swimming lessons with other children or to story time at the library or even to the beach without lots of comments and nasty looks, and you sure wouldn't have found many people at all who would have supported your decision. Now I find that generally (except when my son is in one of his full-blown meltdowns, which ARE scary to pretty much everyone), there are few places that I can't take my children, and few places where they are not pretty well accepted. Awareness and tolerance is rising for the most part, at least in my experience, so we are getting there. It doesn't make the bad days better, but at least we have the opportunity to have "good" days now.
Self-injury is by far the most heart-rending thing that I've had to deal with in our autism journey, and it is absolutely devastating. Fortunately for all of us we've been able to teach my son how to communicate enough (and taught ourselves how to recognize the signs more quickly), and learned enough destraction techniques that those episodes are becoming much fewer. It's also so much worse because you realize that no matter how heartbreaking it is for you- your child has it so much worse. At least I wasn't the one who was in pain (physical and emotional), and I could at least tell someone why I was upset.
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