Some Thoughts About The Various Ways of Being Excluded

Filed Under (Advocacy, Autism and The Media, Celebrity Advocacy, Communication, Contributions to Society, Critical Disability Studies, Discrimination, Inclusion, Parenting, Politics, Research) by Estee on 10-07-2012

I have a comment on comments, either in comment boxes or full blog posts about other writers and bloggers. Usually I won’t write about it, but I decided to write in my own defence. In so doing, I’ve had other thoughts about the various ways of being excluded, as either autistic people, or as autistic allies.

Recently, I did a self-search on Google. I am sad to say that I get used to disrespetful commenters who seem to create a narrative about me that is unfamiliar to me. I am also delighted, however, by comments that build upon a constructive dialogue about autism and disabiltiy and how we can remove the barriers for autistic individuals. I happen-stanced upon a post from 2008 about my blog — that mostly I “get it right,” but advocate for doing “nothing” for the autistic person.

If you’ve been reading my blog since 2005 I’ve done nothing but critically evaluate everything that Adam and I have come across in terms of therapy, education, autistic/social value, and opportunities, and the lack thereof. While the nature of blogs has changed since 2005, many of which have become syndicated journalism, I’ve kept mine in journal-mode, writing about my own growth and development as an autism parent to my beloved Adam.

Adam has been in “therapy” since he’s been 20 months of age and I have reams of notes and binders I have taken to create his programs, track his progress, develop his plans. I have created his programs along with other professionals that use ABA, RDI, Floortime and other methods. I have a decade of experience of autism education and various therapies, many of them dubious. I’ve witnessed improvements in the field where I continue to have a watchful eye. I predicted that we would be forced into an ABA program, and here we are, in an segregated school for autistic children. Not that it’s a “bad” thing. I am actually grateful not to be in a system that completely disregards him, but is set up more for him. Adam, for now, is happy there and he is learning, but it’s a fact that it’s still exclusion which we mitigate with other inclusive programs.

ABA is something that we’ve had to contribute to improve upon because it’s really hard to change the system. To me it is in part a method and in part a label for a type of education that in some schools, uses other methods in addition to it. Adam and I have to “fit” into a mold and make it the best for him — those are our barriers and limitations for now. We work to fill in the gaps ourselves. I learned and taught Adam how to type…by myself — by reading, studying and consulting others who have other expertise to add. Now his school builds upon what I started. Recently, I was asked to write a book about it, and may do so after this year of finishing my M.A. in Critical Disability Studies. I have now five years of typed dialogues between Adam and myself, methods and back story of how it all began. He would never had had this opportunity had I not taken his education and communication upon myself, and I’m not shy to admit it because I hope it will become more mainstream. I am not alone in this among many autism parents. We make our own roads and other parents will share the work they’ve done.

We still work towards Inclusion, but when I made a recent query within the public system, as predicted, it ended up that Adam would be put in the “lowest functioning class” (their term, not mine). His cognition and “capacity” was determined by his limited verbal ability and results on standardized tests (which we know do not befit the autistic person as much as a dyslexic person cannot read typical text). How many students in these classes, no matter what their label, are not getting the education they deserve? Whose to decide on someone’s functioning level and “capacity” when we give unsuitable tests? Who has the right to decide who is normal and abnormal and how do semantics and labels effect people’s lives? Finally, if we decide to write off a “class” of people from the get-go, where do we end up? We are all effected, autistic or not. How we treat our collective members of society is a reflection of how we think about ourselves.

It seems there is a group of people who don’t understand (or want to set others astray) on the meaning of neurodiversity, which basically acknowledges that different people have different neurologies that make them learn and interact in the world in various ways. Myths are spun because it is assumed that if we “embrace” autistic people (some of us have been labeled “Neurodiversity Advocates” in a negative context) it will not serve their politics. I suppose, in the system we currently have which are so exclusive and politically limiting to us, we can understand the method, but I think it’s ultimately detrimental. An exclusive, “tragic” and medical approach to disability limits community membership and opportunity. Until recently, as autism parents, we have had to feed into the “autism tragedy” model in the belief that this is the only way to garner financial support and services. Despite inroads against the medical and disability-is-tragic models, there are many new parenting studies which seem intent on proving that autism causes families to break apart, which to-date, cannot be proven. This is another way of excluding autistic people and their families — by seeking something to blame, researching etiology and causation instead of spending money on understanding autistic individuals and bettering their quality of life.

If we accept and believe in our children and don’t get tragically depressed, we are written off (as I have been on numerous ocassions) as being in denial. I have been labled a neglectful parent, and a “mental case,” (a revelation of the prejudiced inclination of the autism “advocate” who stated that about me).”Those who stray from the this prescribed script [the tragic or depression 5-staged model from grief to acceptance] — for example, by not being as depressed as predicted — run the risk of being regarded as in a state of denial and in need of further psychological guidance and counselling (Oliver, 1995; Reeve, 2000; S. Wilson, 2003).” I think life is all about struggle and we have to work with it. Nevertheless, when we write publically, we leave ourselves open to criticism of all kinds. I embrace that too, but I will also take it on.

It has been challenging to write this blog for the past few years. I’m not allowed, according to some autism parents, to take joy in my son for who he is as an autistic person. My own ups and downs are disregarded if I do not publically lament in the same fashion as everyone else. I opted not to do this because I always kept my son and his community in mind. If I were an autistic person, I thought, how might I wish to be regarded? I don’t criticize others for their depression because each one of us has to take our own unique journey. I simply believe that I, personally, have to exercise a discipline in my thoughts and feelings, which is not to say I don’t have the same kind as everyone else. I have imposed this upon myself. I have always kept Adam in mind when writing publically because I believe one day he may read this. I also wish to embrace and listen to the autistic community (that is, autistic people). It’s unfortunate when others feel they have to “spin” for political reasons or their own benefit.

The other political debates and controversies lie in semantics and definitions. Words are important as they reflect our thoughts about the way in which we see ourselves. We work against traditional systems that have to-date, been oppressive and exclusive agianst the disabled. Paul Hunt first challenged what we call today ‘abelism’ (a society that favours the able-bodied), in his 1966 book, Stigma: The Experience Of Disability. He said, “We are challenging society to take account of us, to listen to what we have to say, to acknowledge us as an integral part of society itself. We do not want ourselves, or anyone else, treated as second-class citizens, and put away out of sight and mind.” (p. 158).

The Union of the Physically Impaired Against Segregation (UPIAS) was formed in 1974. They re-defined the distinction between “impairment’ and “disability” as part of their mandate to “criticize organizations control-led by non-disabled ‘experts’ for their failure to address the social barriers central to disabled people’s exclusion from mainstream economic and social activity and their lack of accountability to the disabled community.” (p.29)

impairment: lacking part of all of a limb, or having a defective limb, organisim or mechanism of the body;

disability: the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (UPIAS 1976z, p. 14).

This social model approach breaks the traditional causal link between impairment and disability. The ‘reality’ of impairment is not denied, but it is not necessarily a sufficient condition of disability.(p. 30).

Writing about autism as a joy, my absolute love of my son for who he is, my personal struggles without pandering to the pressure to lament in typical ways while embracing other’s need to make their own unique autism journey, is about inclusion of everyone. It begins with the fundamental acceptance and belief, however, that all autistic individuals are worthy and valuable members of our collective. It’s a necessary premise.

The social model is not about showing that every dysfunction in our bodies can be compensated for by a gadget, or good design, so that everybody can work an 8-hour day and play badminton in the evenings. It’s a way of demonstrating that everyone — even someone who has no movement, no sensory function and who is going to die tomorrow — has the right to a certain standard of living and be treated with respect. (Vasey, 1992a, p.44)

Reference:

Barnes, Colin, Mercer, Geof and Shakespeare, Tom. “Analysing Disability” in Exploring Disability: A Sociological Introduction, pp. 1-42. 1999 Polity Press.

Towards a New Autism Research

Filed Under (Ableism, Acceptance, Activism, Advocacy, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism and The Media, Autistic Self Advocacy, Book Reviews, Communication, Computing/iPad, Critical Disability Studies, Development, Discrimination, Family, Movement Disturbance, Research, school, Sensory Differences, Transitions) by Estee on 06-07-2012

It doesn’t matter who you are, or how high you rise. One day you will get the call. The question is, how will you respond?” — African American U, Senior Administrator

Adam left for camp this morning. Last week, he did well at his piano recital. His lessons have been adapted for him — colour coding left and right hands, bass and treble clef lines, to give a sense of the many adaptations we’ve learned. Not only have we adapted lessons for him so that he may learn in “typical” ways, but I also asked the teacher to let him explore the piano on his own, as well as have her play for him. I became a musician when I was very young, and a neighbour let me bang away at the keys doing whatever I wanted.

I was proud that Adam was able to attend and play well at his recital. I asked that he make his little bow, and sure, everyone thought that was sweet. Afterwards, as there was another special needs person as part of the concert, I was noticing faces as he sang — his articulation was challenged. I didn’t see gleaming “ain’t that sweet” smiles. I saw strained faces. Not until the children who were fluent with well-pitched voices were singing did the “ain’t that adorable” look beam as high as the church rafters. That effected me a lot, and I pay attention to these subtleties every day. I don’t think people realize the subversive effects of a mere countenance. I, at least, read faces well. Adam seems to pick up on vibes, but that’s my assumption after knowing him for so long.

Last week, Adam was more verbal — asking me “what are you doing?” when I was at work at my desk and he wanted to play. In addition to a successful recital and these questions, we had a “good” week. Having Adam ask me a rare question is exciting. I am happy when he gets more verbal, types on his iPad, and now, starts to ask me questions. When the camp bus came for a visit last week and Adam got upset afterwards, he typed (independently), “why is bus going?” It shows that his world is expanding by his growing ability to communicate. I find myself relieved because I think it will make his life more fulfilling, if not easier in a world that favours the able-bodied and the fluently verbal.

Two days after his verbal “spike,” however, something that comes and goes but improves steadily all the time (akin to a graph with a steady climb overall, but with monthly plateaus and slight dips), and also possibly correlating to the end of school, the transition to camp, a possible cold or allergies (get the picture?), Adam began to twitch more and he lost his ability to talk for a couple of days. He is better at being able to type a few words when he is under stress. He couldn’t do that at all before.

While I still worry, mostly if I see him uncomfortable when it happens, I’m getting better at waiting him out. Whatever is effecting him needs to be processed by him in his own way. Within a couple of days, although the twitching slowly abated. He started to smile and become more verbal after a couple of days of the most intense part of it. I really do not understand what is happening to him neurologically and neither does anyone else. Only some autistic people can give me a sense of it. There is no guru or expert or scientist who has truly “discovered” what causes Adam to tic and twitch the way he does. We know of similarities in other disabilities. Adam was tested for seizures and at least on the day he was tested, it showed negative. These are but some of the things we don’t fully understand about Adam and what we refer to as his autism.

As his mother, I’m well aware of my bias, in spite of my enduring “acceptance” of him. Bias and ideas are so deep-rooted in us that acceptance is something we have to work on every day. (Boy, would I love to read that caveat in someone’s research paper on autism). As Adam’s mother, I realize that although I love him dearly and accept him as he is, it is still difficult to resist the temptation to praise Adam’s “normal” feats and accomplishments only, and not recognize his autistic ones. Like all of us, we are under such a strong ableist or “normalist” influence that we don’t praise, cite, recognize autistic-ness as often as we need to.

We need so much more of a new kind of autism research — one that captures autistic accomplishment without sensationalizing autism. Too often any achievement by an autistic individual gets refered to as “genius.” While in some cases in may be extraordinary, we do this because we are still not looking at autism as a whole in the way we should look at all of humanity. We fracture autism into little bits and pieces as much as we end up doing people.

When I attended Autreat too long ago now (I am due for a revisit), I purchased fifteen years of workshop notes and presentations. I remember when I attended being giddy that there were workshops for autistic kids on how to make their own stim toys. Autreat, founded by Jim Sinclair, who is also autistic, is run by and for autistic people.

For months now since he started in an autism school especiallly, despite my praise of Adam for his feats, I still wonder how I can nurture his autistic-self. So I went downstairs and dug the old material up. Here’s a clue of what I wish to study more about:

How to Play With Dolls: For Kids and Adults Jim Sinclair, disability educator and consultant, coordinator of Autism Network International

For purposes of this workshop, a “doll” may be any inanimate object that we play with by imagining it to have aspects of personhood. This includes the traditional toy-human type of doll, as well as toy animals, and any other toys or objects that our imaginations transform into living entities. In this intergenerational workshop, we will share and explore different ways that autistic people can use doll play for fun and for learning, and ways that parents, educators, and therapists can use doll play to help autistic people in developing skills and understanding…”

Music: What Is It, What Does It Mean To Us, and How Can We Use It?
Katja Gottschewski, musician and music therapist, Bodo, Norway

In this workshop, we will explore different aspects of music. We will look at differences and similarities in how we as individuals or as AC’s and NT’s [autistics and neurotypicals] define and experience music. It will be discussed how we can communicate through music. How is music different than language? Can music be a bridge between AC’s and NT’s?

Understanding How Plants Can Facilitate Connection in Autistic Children and Adults
George Salamunec, HTR, COTA/L, Certified Master Gardener, Susan Golubock, M.Ed., OTR/L
Autreat 2004

Working with, and understanding about, plants can be an effective tool for developing the senses, reducing stress, and learning to make new connections in autistic children and adults. Matching plants to one’s personality and needs is an important first step. Plants provide opportunities for autistic children to explore life, nurturing, modulation, non aggressive options and choices for dealing with natural adversities, and why learning about other life (and people) outside of ourselves is so important…

Making Employment Fit: Accommodations and Other Dirty Words
Joel Smith, Autreat 2004

Employment is difficult for many autistic people. We are square pegs who dont fit nicely into round holes. Rather than forcing the autistic into a job, would it be possible to change the job to better fit the autistic? In this presentation, ideas and real-life examples are presented of how jobs can be modified to best accommodate autistic sensitivities. We will also discuss how to modify your job without alientating your boss and co-workers.

That was from Autreat 2000 and 2004. Twelve years later, I am concerned (especially after attending IMFAR), how we hardly research autistic ways of being. We usually do it framed in a bias — comparative research against the “normal,” population.

We really don’t value what makes up the true and different, “not less,” accomplishments of the autistic person. I’ve read blogs where “experts” bluntly claim that there is “no value” in lining objects up. I’m not going to target the scientist specifically here, but I wonder how many readers of this may have at one time or another thought the same thing? Other than people like Temple Grandin, how can we all study the value of object-organization and how that is transferable into learning at school and later, in the workplace? I don’t think this is a trivial skill that needs to be solely relegated to the OCD side of the human column.

Just because we don’t see the value doesn’t mean it ain’t there. We don’t understand. We are viewing under a comparative, normal versus abnormal one, and that’s so limiting. While I try to make the “least dangerous assumption,” a term first coined by Dr. Anne Donnellan, I realize that I must work to continue to see Adam for who he is in all contexts. It’s a absolute daily task and obligation of mine as his parent. I wake up every morning thinking about this, more than I pander to alarmism. In fact, next time an autism commercial brings you to tears, please ask what buttons are being pressed and why, and if there’s a better way to achieve a quality of life for us all?

I’m also reading Anne Donnellan and Martha Leary’s newly released book Autism: Sensory-Movement Difference and Diversity and I would highly recommend it. I liked especially this example:

According to Oliver Sack’s book, Seeing Voices, in learning sign in infancy he will develop brain patterns remarkably different from his ‘normal’ peers. And he will continue to develop in different ways, but we can in no way call those differences ‘deficiencies.’ He will develop different social and cultural skills. If given the most standardized IQ tests, even with a signing interpreter, he will perform differently, and possibly less well, than his speaking/hearing peers. On tests that tap the developmental experiences of deaf people he would probably score far higher than his hearing friends. Yet it is no surprise but nonetheless sad to learn that for decades deaf children were routinely diagnosed as mentally retarded. Still today, they are often considered to have diminished capacity relative to their hearing peers, even when we clearly know that they can flourish if given the appropriate education and experiences. (p. 33).

Consider that, for the deaf which we think we’ve come, arguably, to understand and accept, of how far behind we are in autism to apply this level of consideration. Think how far behind! Thankfully, a small pool (and I hope a growing one) of researchers are taking up this call. In Steven Kapp’s (et al) paper Deficit, Difference of Both? Autism and Neurodiversity, there is also a call to discover the state of autism acceptance and “potential areas of common ground in research and practice regarding [how] autism [is] discussed.”

Scientists, working with the community, can help stakeholders with competing agendas make informed choices between rights, responsibilities, and needs at personal, social, and political levels by affirming that diverse societies respect multiple perspectives.

I’d like to see us all work towards the question of how to nurture autistic strengths and learning and balancing the real need to cope in this world as a minority, as well as continuing to value autistic contribution and being in society.

A Whole Better World
Autreat, May 2000,
Clay Adams

I can imagine a whole better world,
Where people don’t laugh at each other’s pain
A world where the sun shines on every one
And one’s well-being is everyone’s gain

Must we, in fact, feed off each other?
Fool the unwary, to sell our wares?

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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.