Happy New Year From Mexico

Filed Under (Uncategorized) by Estee on 31-12-2008

Adam and I wish all our friends a very happy new year as we enjoy some well-deserved sun and ocean along the Mayan Riviera. We fed fish bananas, we are swimming with dolphins, swimming in caves and this mom is going to the Mayan Temples to pray to any one who may be listening…hopefully it won´t entail any slave to be slaughtered to the gods on the altar. I don´t believe in those kinds of sacrifices :)

Anyway, here we are, just Adam and I this year and it may take me another year or so to think about the year that just passed.

Wishing health, optimism and happiness to everyone. Thank you to all the folks who sent me hundreds of messages (I just discovered them on Facebook today) on why they joined TAAProject (www.taaproject.com). These will be going in our next Newsletter.

Thank you also to those of you who have written to me personally. I believe in the power of the Internet and the connections we have made with one another — many of you I have met in person over the years. Thanks for all your support. I just think you are all so amazing!

We Belong

Filed Under (Uncategorized) by Estee on 28-12-2008

Adam and I are spending a windy Sunday at home at later at a play. Mornings are nice, just the two of us playing, reading and taking it easy this holiday season. He reminds me of myself as a child — happy and content to pretend play with his puppets and other toys and happy to climb into bed with me and just snuggle and giggle.

It has been difficult for me to write this season. So let me borrow someone else’s words that are an inspiration to me, and maybe to you too as we traverse through an intolerant world. 

 

You are the Keeper of the Keys. 

You are the Guard at the Gate.

Waiting in line to get through that door.

Is LOVE. And also HATE.

In line to enter is GENTLE PEACE.

And also VIOLENT WAR.

You must choose who may, and who

may not come through the door.

INTOLERANCE tries to sneak on through

On wings of FEAR and PRIDE.

It hides behind DREAMS of BELONGING,

And tries to sneak inside.

Oh! Be alert! You’re the Guard who decides

Who GOES and who may STAY.

You are the Keeper of The Keys To Your Mind.

Who will you let in today?

–author unknown

That Elusive Thing Called Happiness

Filed Under (Uncategorized) by Estee on 27-12-2008

I stumbled across my quote of the week. If you are one of my Facebook friends, you’ll notice I pick one about every week that means something to me.

“Happiness comes when your work and words are of benefit to yourself and others.” — Buddha

Happiness does not come from the outside or from others, but we all know that, right? So often we seek it from other people. I think what I most admire are the people, many who have gone through so much more than I have in this life, are those who find their contentment from within — who do not chase rainbows. Only then can we really have compassion for others in any circumstance.

In the old Joy of Autism blog (which you can download in the margin) I wrote a few times about just what happiness might be for all of us struggling either with our own views, or the barriers that confront autistic people. As I move on in my life now, employing compassion with continued intellectual debate will continue to be my goal. It is something I have tried to practice since Adam was diagnosed and since every bump and turn called life. It’s just too short to waste being angry with it. This is our real test.

Really, it is Adam who has helped me to grow in so many ways; who has brought me to so many of you from who I continue to have great interest and learn.

I know, I might be sentimental as I travel through some new challenges, but hey, it’s the end of the year.

Thank you.

The Understated Value of Grandparents

Filed Under (Family) by Estee on 24-12-2008

This evening, Adam and I went to Grandma and Grandpa’s for our Xmas eve dinner. We celebrate both Hanukkah and Xmas in this family. After opening our presents — something that Adam never used to be interested in and now has taken interest with a vengence with any prettily wrapped package — I sat back and watched Adam and Grandpa diligently putting together a model of an ear. It took a great deal of time and patience! Grandpa and Grandma must have thought, as Adam gets a few ear infections and he is hypersensitive of his ears being touched, that taking the mystery out the ear’s anatomy might interest him. I quite think it did. Leave it to the Grandparents to come up with such a brilliant idea!

I sat quietly in the background with a great sense of peace watching them working together. You see, Grandpa is a special person in Adam’s life. Grandpa is the man who teaches Adam so many things and loves to show him new things every weekend if he can get the chance. Grandpa cooed and sang to Adam in the days when I spent hours trying to get him to sleep. I would try, then if Grandpa was around, he would offer to try and ask me to take a rest. Grandpa would cradle Adam in his arms as if he was the light of the world, swaying him and singing to him in a deep, soft voice.

Grandma, don’t be offended — you are awesome too — feeding and catering to his every whim and need and taking him on subway rides and to the museum. You are awesome. I’ve never seen a Grandmother make so much fuss over her Grandson. But you see, it’s their only Grandson, and I am their only child. This really means a lot.

Grandparents are so incredibly special and I just had to sit and watch how calm Adam is with his Grand-dad. They have a special, unbreakable bond and I thought it was a good time to embed this in my memory forever.

Grandpa and Adam

Grandpa and Adam

For Whom The Bell Curves

Filed Under (Critical Disability Studies) by Estee on 21-12-2008

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.

His Pride and Joy

Filed Under (Adam) by Estee on 19-12-2008

Tagged Under :

It’s snowing big time here in Toronto. I’m sitting in my office at home, trying hard to write after a challenging year and many bumps and turns and major life changes in both my body and my spirit.

And yet…

There is Adam. Always here, always wonderful.  I’ve worked hard to keep his routines, a sense of stability and look what he did for me, for us…look at the pride on a little boy’s face when he knows he has something to contribute to the world. Many of you in a survey I did, noted how Adam is such an inspiration and the most enjoyable posts for you were about him. I am careful about writing too much about him as he grows up now unless he gives me permission to do so, which he is quite capable of. So here, he has given me permission to share these photos — his pride, his joy, and hopefully we can pass a little on:

Adam's First Major Pointillist Painting
Adam's Pride Over His Own Work
Adam

Re-Awakening The Blogger Within

Filed Under (Uncategorized) by Estee on 17-12-2008

Tagged Under :

I’ve decided to do some re-posts from my Joy of Autism blog which didn’t get uploaded into the PDF version of the blog:

Does Autism Research Support Humanity or Human Deviance for Profit?

McMaster University is doing autism research. Autism Speaks raises a lot of money. Much of the money goes towards research to detect autism early or towards preventing or curing autism. The purpose of early detection is for early intervention. The concept of early intervention is derived from a medical model where the earlier diseases like cancer are detected, the better the chances of living. As a person recently diagnosed with early ovarian cancer, I can attest that in the case of mortality, I am thankful for early detection. However, in autism, the premise of early intervention isn’t that much different – children begin to undergo a rigorous process of “becoming normal,” and are taken out of regular daily life, because they are not deemed “regular.” They are viewed as sick.

So it is with skepticism and partial interest for me to read of the recent research done at McMaster University of eye tracking as seen in The Globe and Mail today. The idea is that at nine months of age, we might be able to detect autism because it is assumed that autistic babies do not follow changes in eye direction. The early diagnosis is to find those children at “high risk” for autism.

I didn’t know my son Adam was such a risk. A risk to whom? I have to assume he must be seen as a risk to society, even though our friends quite enjoy him and he is living quite well. If living well means to receive an aide to assist and a teacher who understands so an autistic person can learn, then I feel that that is where the money should be spent. I also can’t say that he would have passed or failed that eye-tracking test and it’s my guess that with the ranges of autistic people out there, the test will not be very reliable because there is not one general assumption in autism that is universal for every autistic person. Adam’s eye contact seemed okay, maybe a little inconsistent. It was his play and interests that were different – the ones that also gave him an exceptional ability to read and correct his classmate’s work because of his ability to SEE the things they cannot.

Further, “the probability of a baby developing autism,” would not apply to us. While individuals may develop autistic-like behaviours, it’s not necessarily autism. I can attest that dear Adam has been autistic since birth and probably in vitro. His wide almond eyes were curious and clever from the moment he was born. His surroundings were already an assault on his senses.

So where does this leave us? All this money being spent on finding earlier interventions to make our children less autistic? All this money being spent on tests that do nothing afterwards – they do not advance inclusion or eradicate fear of human difference so that our children receive fair and equal education and opportunity. No one is really working to understand and respect how autistic people learn so that our kids can become part of the world. No, early detection is still eerily angled at eradicating human difference.

In her essay Age, Race, Class and Sex: Women Redefining Difference, Audre Lorde writes:

“Much or Western European history conditions us to see human differences in simplistic opposition to each other: dominant/subordinate, good/bad, up/down, superior/inferior. In a society where the good is defined in terms of profit rather than in terms of human need, there must always be some group of people who, through systematized oppression, can be made to feel surplus, to occupy the place of the dehumanized inferior. Within this society, that group is made up of Black and Third World people, working class people, [autistic and other disabled people], older people, and women.” [Brackets mine]

She notes how it is the underclass, or oppressed groups, which autistic individuals have described themselves, that are expected to bridge the gap, change, be cured, act normal, rather than society who also makes a concerted effort to understand, accommodate and accept difference:

“As a forty-nine-year-old Back lesbian feminist socialist mother of two, including one boy, and a member of an interracial couple, I usually find myself part of some group defined as other, deviant, inferior, or just plain wrong. Traditionally, in American society, it is the members of the oppressed, objectified groups who are expected to stretch out and bridge the gap between the actualities of our lives and the consciousness of our oppressor. For in order to survive, those of us for whom oppression is as American as apple pie have always had to be watchers, to become familiar with the language and manners of the oppressor, even sometimes adopting them for some illusion of protection. Whenever the need for some pretense of communication arises, those who profit from our oppression call upon us to chare our knowledge with them. In other words, it is the responsibility of the oppressed to teach the oppressors their mistakes. I am responsible for educating teachers who dismiss my children’s culture in school. Black and Third World people [and autistic people] are expected to educate white people as to our humanity. Women are expected to educate men. Lesbians and gay men are expected to educate the heterosexual world. The oppressors maintain their position and evade responsibility for their own actions. There is a constant drain of energy which might be better used in redefining ourselves and devising realistic scenarios for altering the present and constructing the future.” (P.p. 114-115 Audre Lorde, Sister Outsider, from her essay Age, Race, Class and Sex: Women Redefining Difference)

Rather than focusing research on eradicating difference, it should serve to examine the way we come to base our research on human deviance and the way we include autistic people in participating in research and on boards of directors. (Must I mention that no school board here in Ontario has an autistic person on it??) “Too often, we pour the energy needed for recognizing and exploring difference into pretending those differences are insurmountable barriers, or that they do not exist at all. This results in false and treacherous connections. Either way, we do not develop tools for using human difference as a springboard for creative change within our lives. We speak not of human difference, but of human deviance.” (P.p. 115-116)

We do not wish to refuse to see the challenges that face autistic individuals, but to re-imagine disability and autism. We spend so much of our energy mourning, eradicating, detecting and in the meantime, our children get locked out of schools, even “special ed” schools, or they can’t go to camps with shadows. They are not allowed to go to school with aide dogs or devices. They are viewed as a disruption to the classroom. The barriers that exist do not lie within the autistic individual, the barriers lies in attitude.  We spend so much money to re-affirm that autistic people are less valuable and more deviant and yet more prevalent than ever before. Autism Canada has mimicked the Autism Speak’s style commercial to make autism appear like a horrible epidemic. They shamefully have objectified the autistic individual in order to raise money. Adam and every other autistic individual need not be objectified in order to be viewed as society’s surplus, or an object for research funds. So far, I’ve found little research that has actually shaped the lives of autistic individuals for the better.

Adam is the best. He works hard, he is smart, and he can type now. He is human. He is different AND equal and once our autism research is developed on that premise, maybe, just maybe our children will no longer be used for profit as the “surplus members of society,” bur rather, be viewed as valuable and able to contribute to it.

Reference:

Audre Lorde, Sister Outsider: Essays and Speeches,  Toronto: Crossing Press, 1984.

Welcome To The New Joy

Filed Under (Uncategorized) by Estee on 16-12-2008

Tagged Under :

It’s hard to believe I’ve been blogging this blog since 2005. If you want the PDF of my older version (2005-2008) you can find it on the sidebar for download. Unfortunately, it lost some of the attachments and videos, but that’s what happens if not by PDF-ing, but by time itself. The web changes, videos come and they go. The Internet is an endless stream of information always reinventing itself.

And so, I have too. It is a necessary act in life, and particularly of my generation. In light of some major changes in both my life and attitude, I have redesigned the blog to hold more essays, articles, videos, as well…the continuing blog. This site is not quite finished, and like all interesting things, will continue to evolve. I hope you like it. I would love to hear your comments about it.

The Autism Acceptance Project is also on Facebook. Make sure to check us out there. If you haven’t already, sign up for our TAAProject newsletter at www.taaproject.com.

In the meantime, I wish you all a safe and happy holiday season. Perhaps I can leave us all with a few words not of my own making, but from “The Essence of Wisdom” by The Dalai Lama:

“We humans are social beings. We come into the world as the result of others’ actions. We survive here in dependence on others. Whether we like it or not, there is hardly a moment of our lives when we do not benefit from others’ activities. So it is hardly surprising that most of our happiness arises in the context of relationships with others. Nor is it so remarkable that our greatest joy should come when we are motivated by concern for others. But that is not all. We find that not only do altruistic actions bring about happiness, but they also lessen our experience of suffering. Becuase every action has a universal dimension, a potential impact on others’ happiness, ethics are necessary as a means to ensure we do not harm others.”

I want to take this opportunity to thank all of my fellow Autism Hub bloggers, writers, friends and an online community that threads us all together. As Amanda Baggs and other autistic friends note so many times, none of us are independent. We really do need each other.

What’s the Difference Between Parents of Bi-Racial Children and Disabled Children?

Filed Under (Uncategorized) by Estee on 15-12-2008

Tagged Under : , , ,

A Post From The Joy of Autism, July 2008.

Diversity training has begun on the popular airwaves. CNN’s Black in America, with Soledad O’Brian, aims to express the  many sides of living as a black or bi-racial person in North America. Watching it, I see a similar theme that may be helpful for parents with autistic children. It is the comparison of being black and having a white child or vica versa. It is the experience of a parent without any disability or experience of it, who has a disabled child. If our children are “not like us,” then who are they? To which community do they belong?

I believe it is one of the major sources of tension out there – why the “recovery” movement is so strong, why acceptance is so difficult. While not accepting the status quo is great in terms of pushing for acceptance and inclusion of disabled individuals, it is not that helpful when the movement takes a turn to fundamentally change the individual’s genetic make-up — to say, in essence, there’s something ill, or wrong with you. You are sick and we have to fix and heal you. If we don’t, your life will be hard. We’ve heard it many times — there is a strong movement against calling  disabled people ill. The medical model doesn’t fit the human model. While medicine can help us feel better, it can’t take human difference away. If it tries, it can’t be successful. I’m one who believes that any “progress” in science will see its regression too.

In other words, not only will there be ethical problems, but with every seeming “advance,” there is also an antithesis. With the advent of our lives being extended, for instance, we have more disability — this is not to say that disability is wrong, however, with the extension of our lives, it is natural. If you are religious or believe in God, one might say that only God knows why he creates what he does. If you are secular, you might believe that there is meaning, value and importance in the grand scheme of things, and that is still, perhaps like God, ineffable.

I believe that some of my family members have strong autistic traits. My father did not speak until he was six years old, for instance. He became an engineer and has exceptional eye for technological detail to the point of losing others when he talks about it. It is his obsession (sorry dad, but I think you are a brilliant). I crave alone-time and privacy and am much less social than my husband to the point that I think others may not understand me (I prefer to communicate more in writing and am not as reserved when I do so). As a child I used to play alone for hours and would twirl until I passed out (Adam does not twirl). I found idle chatter highly uncomfortable yet as I’ve become older, I’ve become better at persevering small talk. Like Adam, my obsessions have been words and letters. I invest in art with words in them or art that looks like it has been written upon. I am a big fan of Cy Twombly. I collect scrabble letters and typewriters.

Because of Adam, my interests and habits have become more obvious to me. So, I guess Adam, who is autistic in a non autistic family, really does belong. We share the same physical features. We even share personality attributes. Yet, he has a label and I don’t (which may suggest the nature of labeling and why so many people cringe with labels — they can help AND hinder). He is “autistic,” while the rest of his family “is not autistic.” He has a community that organizes conferences for and by autistic people. I cherish that for him.

Maybe in a way, I even envy him. For the communities who must really stand and stay together become the strongest. I do not fully belong save for being his strongest ally. Some people get offended when they hear “autistic person.” Some prefer “I am a person with autism.” Without re-hashing this debate too much about person-first language, I don’t think it matters how we put it. It’s the manner in which we put it – the tone of our voice, and the way that that tone reflects how we feel about people, the words we put alongside autism. It matters that we all recognize that we are all the same despite our differences. We are all equal, even though our contribution and output may manifest differently. We all have the same rights, even if one person is less independent than another. It doesn’t all fit into a nice convenient box, that may be true.

As such, I like the comment made on the CNN blog about pride. Autistic pride, gay pride, we all know why those movements have had to spring into action: because there has been too much medicalization and stigma of both, and a need for society to become familiar with the paradox of difference and same-ness.

There is no “other.” There are only variations of ourselves. So I found the hundreds of comments on this series really interesting in the context of diversity, pride, but most of all this sense of which culture do we become loyal to or do we identify with? In my view, why can’t we belong to more than one?:

Lynn Whitfield
Actress


My daughter Grace and I watched the premier of CNN’s
groundbreaking “Black in America.” I thought we would have
lively discussions around many of the themes concerning black
women in this country. However, when she saw the segments on
interracial marriage and the children of those relationships, she
had a visceral response.

I saw an activist being born.

Grace seemed ready to adapt James Brown’s black anthem to
her cause: “Say it loud, I’m blended and proud!” I saw my
daughter stand up for the equality of blended people like herself
in all her olive-complexioned, big curly afro-like glory. She went
immediately to the computer with dignity, passion and
everything but a fist in the air…

As a parent of biracial children, it feels really good to read such
an article. That’s exactly the way I want my children to be about
their heritage: proud of both!

It is definitely unfortunate that you have to make a choice
between different races. There are still a lot of administrative
papers which do not have an “Other” section. Very confusing for
the parents and children.

But after all, aren’t we all from Africa anyway?
—–
I am proud of having a child with autism/an autistic child. I believe that being autistic forms an important part of his experience with the world around him — both from a sensory point of view as well  as how he will be treated and regarded by others. He will grow a natural sensitivity to this and his ideas will be shaped by it. It is why I say that he is an autistic person. Jenny McCarthy, because she thinks autism is a disease, and is afraid of it like cancer, is appalled a the notion of calling a child autistic. I see her view as a denial of our children’s right to be who they are and accepted for that. I personally think it is wrong for a parent to think disability, or autism, is a bad word. I think the disability community, much like race, do not identify with the cancer comparison in the sense of being ill, however, it is interesting to me, after being through a
stage one cancer experience myself this year, that people with cancer will identify themselves as being “cancer survivors” in order to explain who they are by virtue of their experience with
cancer. Going through cancer, as my mother and I can attest, indeed shifts something within you. The experience forms who you are. And I don’t see the problem with that.

I want Adam to be proud of himself as he is. He is part of a family who shares very many of his traits –inward and outward — yet he also appears different in the way he expresses himself and moves. Autism may be similar to the experience of being bi-racial or “blended,” if you will. Autism is a part of all of us.

Yesterday, Adam sat through the entire movie, E.T. Watching with him made me either believe Steven Spielberg is really autistic, or that the man really gets it. Usually, Adam can get into 30 minutes of a movie, and he’s off doing something else. Yesterday, he would watch, then giggle, then roll around the couch, then snuggle with me — enough antics to make many adults think that he couldn’t have been really paying attention, but I could tell he was. There were also moments when he would repeat the lines. He would watch the screen and be still.

Therapists tend to use the same stories over and over again to assess an autistic person’s comprehension of a story. And yet, when Adam sees something new, or more complex than people
thinks he will understand, he really gets the gist of things. This typed conversation I had with him yesterday illustrates this:

Me: “Adam, I really enjoyed watching the movie with you today.

Adam: i like toad.

Me: what was the alien’s name?

Adam: et

Me: E.T. had lots of feeling and a very big heart. E.T. had lots of
love for others.

Adam: Et was the guy yes

Me: E.T. could hardly speak. In a way, E.T. is like you. He
understands but finds it hard to talk.

Adam: E.T. was question

Me: Do you think you and E.T. are similar?

Adam: E.T. was the want

Me: What is want?

Adam: E.T. was the want to speak.

Me: E.T. wanted to be able to communicate. What else did E.T.
want?

Adam: et wanted to go away.

Me: Where did he want to go?

Adam: home.

Me: yes, we all want to be home and be with people who are like
us.

Adam: i people.”

Indeed he is people, a person. Adam is Adam and he is all of us.

POSTED BY ESTEE KLAR-WOLFOND AT 7/27/2008 PM
SATURDAY , JULY 26, 2008.

ads
ads
ads
ads

About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.