In Retrospect

Filed Under (Uncategorized) by Estee on 28-04-2009

 

I’ve been reading the thousands of pages of Adam’s journals I’ve written and kept track of over the past seven years. It’s a lot of tracking. I’ve tracked everything from the structure of our days, the logs of his work and progress, his first “steps” in every aspect of his development, those early ABA charts, other progress reports, my to-do lists….I still survived on severe sleep deprivation (Adam never slept through the night), life obligations, taking care of four other step children (I always felt guilty at having to ask them to quiet down when Adam came around not knowing that Adam was autistic and extremely noise sensitive at the time), autism activism and advocacy, three of my own surgeries and three of Adam’s (ear and dental), and of course, my own struggle with accepting the various aspects of the journey. I have so much paper that I am quite surprised and fascinated that I look back on those old days as no big deal. Yet, one can say that in retrospect. I could tell parents all about acceptance and the journey, but each of us has to go through the years and experience ourselves. When I write like this, I have no idea if it fully sinks in to a “new” parent. There is reading, absorbing and then there is knowing. I can see it through my notes, all the queries, all the research I did, all the intensive time I spent observing and playing with Adam. I see who I was and who both Adam and I have become.

Other than pejorative referencing of autism as illness, and of course, dangerous therapies that risk a child’s health, well-being and life, I can discuss autism with so many parents with different attitudes, which is the gift of time. I meet parents who have taken a different route, who think differently than I do, and in most cases, it’s pretty much okay (again, unless they want to describe my son as of lesser value and do not accept him, then get out of the way).  

We are all on the same route taking different paths. Many of us see things differently. There is still work that needs to be done; questions on the nature of what it means to be human and a full acceptance of our children by and in every facet of society.  I do not think that our kids need to change themselves in unnatural ways (an autistic person will always be autistic) in order to fit in, for being a part of this world is a constant compromise, but one should never compromise one’s true nature. As a woman going through a divorce who has made enormous compromises, this resounds so strongly within me these days. Being a woman in this world somehow draws me closer to others who need that strong sense of acceptance and belonging. I know I write as a woman in a particular circumstance, but there are dads out there too who are going through the same journey. I do not want this post to sound this is for women-only. We can only belong when we first accept ourselves.

I think I’ve survived it all so far pretty well, maybe even more than “pretty-well.” Yes, I have feelings, and no, it’s really not easy. One doesn’t have to pretend to be strong in order to be strong. Strength comes from not being afraid to talk the truth — in not being ashamed of being sad, weak, in need of help, in finding the humour in things…

Divorce, cancer, autism, stigma, and I’m still standing. Adam is still happy through it all because mom doesn’t believe that anything less than fortitude, truth, and a positive attitude is warranted in this world. Mom believes that Adam is good enough as he is, and now, as a single person, that she is more than good enough as she is. She expects Adam to clean up after himself, go to school, continue learning and contributing to the world. I expect no less of myself — of fulfilling my own purpose. Everyone, no matter what challenge, can press on. We all have a purpose in life that needs to be fulfilled. It is our hope, our inspiration, and our difficult, yet still inspiring, mountain to climb.

Autistic Boy Struck By Police for Standing

Filed Under (Activism, Discrimination) by Estee on 25-04-2009

 

April, 25, 2009, Chicago Tribune:

Days after Chicago police promoted their expanded training for dealing with people with autism, a teen with the disorder was allegedly struck by an officer who ignored the family’s pleas that he was a “special boy.”

While Chicago police refused to discuss the incident, relatives of Oscar Guzman detailed the alleged assault and said it was an example of why more officers need to be trained in handling people with special needs.

Guzman, 16, was standing on the sidewalk Wednesday night, taking a break from working in his family’s fast-food restaurant in the Pilsen neighborhood. He was watching cars go by when a police cruiser pulled up and two officers began asking him questions, his family says.

Guzman didn’t understand the questions, said his sister Nubia, 25, and looked down, away and eventually began walking away. Diagnosed with moderate autism at age 4, he doesn’t like confrontation, his sister said.

 

This story comes on the heels of the other incident in Newfoundland several days ago, where an autistic boy was arrested for walking. Due to the difference in his gait, the officers thought he was drunk. In both instances (see previous post) officers deny the allegations, excusing as “an honest mistake,” or “not commenting until further investigation.” If these statements don’t infuriate parents and autistic people, I don’t know what will. Seems to me that our society values deceipt (covered up as “honest mistakes” and “further investigations), more than honesty and goodwill.

In this Chicago incident, the report states that Easter Seals gave them a training list. Sounds like paper to me. If we don’t get autistic people in there training our police, and some parent allies as well, I’m not sure a document will do the trick.

Autistic Boy Arrested for Walking

Filed Under (Activism, Discrimination) by Estee on 23-04-2009

Dane Spurrell, an autistic fifiteen year old, is arrested for walking out from a video store. Apparently, because his gait was different, the police officer thought he was intoxicated. Despite pleadings from the mother that Dane is autistic, the boy was incarcerated overnight.

“It was an honest mistake,” the police insist.

No, it’s not honest but indeed it is a mistake. Mom wants an apology, and this is what she gets in return. This is flat-out discrimination. Think about it: because someone walks with a limp, they are deemed to be drunk. They are not accepted for being autistic, after the mother pleads with police.

I think about all the news stories I read every month on a boy being kicked out of class for acting autistic, for being who they are; all the arrests.

There is a reason to galvanize. Yet, I’m perplexed how the autistic community can’t get past individual differences to protest what is clearly wrong.

I know many of us will be blogging about this today, and we should. Autistics have to face this every day. We parents who love our children have to go out and educate others every day as well. Be it in hospitals, schools, programs and even with the police, our work is never done.

The Autistic Foodie (and Other Passions)

Filed Under (Adam, Communication, Development) by Estee on 20-04-2009

There’s nary a moment when I won’t find Adam engaged in some new passion. Unlike the so-called “static” nature of supposed autistic interests and fascinations, I find Adam’s interests variable and ever-evolving.

Lately, he loves puppets, faces, art (he’s an excellent artist), making faces, swimming, the ocean, and most of all, reading cookbooks and then, cooking. He has always enjoyed cooking, but now that he has better coordination, cooking becomes more fun. I thought of this when I traversed upon this website: http://www.mywire.com/pubs/Lets-Cook/

Adam deciding what he wants to eat at Tony Roma’s

We’ve always wrote out the recipe in visual form for Adam to follow, and I know many parents employ this structured approach which works very well. For those of you who are new, you might want to check it out. It’s a good step to break down other creative projects as well, and might give parents some ideas.

Adam used to be the young boy who wouldn’t have much of an attention span. He used to “obsess” over his alphabet and numbers, and love to watch videos over and over again, and we expanded his interests by using his own and also allowing him to just be with his own. While he likes the alphabet I once never imagined, in his early days, when he wouldn’t need the alphabet anymore (in the calming sense or as a restricted interest). I could have obsessed over this as a parent and let it (excuse the pun) eat me up. Now, we watch little tv and spend our days reading, making things, going out, going to the theatre, playing and visiting friends, discovering new toys and yes, in the pool of our activities, there is still a lot of swimming.

I keep wondering how to relay this to a new parent of a young child who has just received an autism diagnosis. How do you talk to parents about how life will be? It is a question that many of us “older” parents think about a lot. There is no way, I have concluded, to offer advice except to speak of our own path and acknowledge that everyone has their own journey. My life with Adam is different than I thought it would be before I had Adam or before he was diagnosed. Yet today, as we’ve simply lived our lives, we no longer fret our days away. We just do. We just live. Only time and learning to live with Adam as a member of our family who as GIVEN so much to us, has it mellowed me. One could read this journey by going back to the early days of my blog as I observed prejudice, among so many other injustices. There comes a point, unless it is outright cruel and pointed, that one becomes less angry and understands that the only way to social justice and acceptance is to carry on with a level of determination and constancy.

To live peacefully is our ultimate aim. To accept autism isn’t to accept in order to cure or “recover” (a silly word used as a curtain to hide the word “cure”). Acceptance means to leave what is and get on with living.

Hmmm… I wonder what I feel like cooking tonight….

Research That Enhances Lives, Not Annihilates Them

Filed Under (Activism, Critical Disability Studies, Research) by Estee on 12-04-2009

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.

Actions Trump Religion

Filed Under (Family, Uncategorized) by Estee on 12-04-2009

I don’t mean to rain on your Easter Parade. Or for that matter, your Matza Brei. It is another religious holiday again and I wish everyone peace and happiness as you celebrate with your friends or families. Also, I would like to think of the vast majority of people who have no place to go today, who have no friends or families, or at least have not been invited by them to eat at their tables.

Religion and holidays tend to make me question everything that has to do with religion. I have seen and experienced unjust things on the “holiest” days of the year, for man cannot, by his very nature, live up to these expectations created not by God, but by man — the leaders of religions. I listen to people who won’t eat pork, but will eat a cheeseburger or shellfish, when their religion bans it. I am very interested to listen to the concept of “observance,” and “tradition,” but am equally interested at how individuals modify practice in order to suit their own needs. Religion has come to be something we consume and like all consumption, it eventually leaves us empty.

So what is it that we hang on to under the religious umbrella?

I can think of one thing: family and friends. We all want to be connected to each other. Religious holidays can sometimes force us to do it. But when the holiday is over, then what? I am concerned that what we lack is not religion, but connection and spirituality. That last word is so overused. It is sold on video tapes and spirituality is often tied in with some aspect of “becoming successful,” in a monetary sense — get in touch with yourself and the money will follow, and usually you can find some book that links in getting in touch with yourself and success in business in seven easy steps. But spirituality it isn’t concerned at all with money, achievement, success. It is concerned with love. Sometimes the money will follow and sometimes it will not. But even if it doesn’t, one can feel so filled and complete by doing the things we love. Love is about connection, a deep connection to everything around us so that we realize we are never alone.

“The Hindu-Moslem-Christian-Jewish-Buddhist believe about ultimate reality is beautifully summed up in the first epistle of Saint John: ‘Let us love one another, for love is God and everyone that loveth of born of God and knoweth God.'” (From Bell Hooks, All About Love: New Visions, p. 75).

Religion is the most segregating and alienating aspects of human life. And that is my humble opinion. It does not urge people to act out of love, but instead act out of pity. It says you will have a place in God’s kingdom if you do “good acts,” even if you just throw money at someone or some cause. Yet, it is the most selfish way to act. Instead, if we view God as a power within us, the power of love that transcends us, we are living in the here and now, fully, with dignity, love, and respect for all life. It means that when we love others as ourselves, we try to engage with them.

I hope we can all decide not to hide behind the matzah and the Cross, but come out and treat others with love and kindness. Seems to me the world and all its creatures are so in need of this action, above all else, for John says, “‘anyone who does not know love is still in death…’ All awakening to love is spiritual awakening.” I know this to be true as far as Adam has awoken something very special within me.

If someone is suffering in not being accepted by a person or a religion, or is experiencing extrication of any sort, let us all try to listen and share. Act out of love, not to save ourselves a place in heaven. For ultimately, we ARE each other’s pain, suffering and struggles. We are all one.

Darwin’s Children?

Filed Under (Activism, Communication, Critical Disability Studies) by Estee on 06-04-2009

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.

April Fools — It’s “Autism Awareness Month” Again.

Filed Under (Activism, Autism and The Media, Autism and Vaccines, Critical Disability Studies) by Estee on 03-04-2009

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.

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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.