Mental ability and the Discourse of Disease – another comment on a Globe & Mail article on “Treating the Brain and the Immune System in Tandem”

Filed Under (Accessibility, Critical Disability Theory, Disability History, Discrimination, Ethics, Eugenics, Identity, Inclusion, Institutionalization, Intelligence, Media, NEugenics, Newgenics, Research, Science, The Autism Genome Project, What is Disability?) by Estee on 19-01-2015

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Again, the suggestion that mental illness – an umbrella term under which autism has also been thrust – is discussed in terms of biological disease. Says the Globe & Mail this morning: “It probably brings us closer to hammering in the idea that mental illness is a disease… It’s a disease we don’t fully understand.” You can link to the full article here by clicking this sentence. Let us put aside for the moment that our medical journalism lacks any critical thinking or understanding of a now broad oeuvre of disability theory and literature. A critique of the media is indeed part of this blog post. Journalism has become as cheap as reality-TV – let’s make something out of nothing. Sure, I’m a cynic, and I tire of news reports on autism and the discourse of mental illness as disease. They are indeed a big obstacle to much of Adam’s progress in terms of how people accept and view him.

The “great” modernist project has been built around not only biology, but revolutionary biology. This includes environmental – internal and external biological causes for “mental illness.” There are two components to that sentence to unpack; the first being that the modernist age has been defined by production and individualism. The notion of autonomy is conflated with the working citizen who fulfills the Social Contract by virtue of pulling oneself up by one’s own boot-straps. Simply put, it stands to reason in this view that our biological goals have largely been built on supporting what is a statistically “normal” “good”-working body. This was indeed a part of the Eugenics Project. Any body that falls beyond the bell curve, continues to be deemed a financial burden and a cost to society. Therefore, the creation of a dependent body is morally judged and biologically defined. This is typically what is constituted as a social construction under which we have created institutions, special education, early intervention and the like.

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I am tending to envision (as do others) our present age not simply a post-modern age – although I prefer post-modern theory to redefine the human and extend to other ways of knowing outside of the medical model – but a bizarre hyper-modern period (Umberto Eco used this term in hyper-reality, aesthetic, theory). Briefly, this means that we have extended the Enlightenment project – the one that created modernity in search of normality – into overdrive, seeking to land the first man not on the moon, but to create his or her “theory of everything” to define disease – or the right or wrong kind of human. The first discoverer wins the big financial and reputational prize. Disability theorists do not en masse agree or disagree with the implications of biological alterations, and the use of technology has indeed proven to change the lives of many. I do not have the space herein to discuss all of these aspects.

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Instead, let me point to a belief that every research project must create a cure as good as it was for polio. I mention this as an example of the drive to cure diseases of all man-made kinds as well (meaning the socially constructed ones). This raises all kinds of important questions about illness and pain itself including the right to live, die, moral judgements about illness, and so on. I am not mentioning polio for these reasons here, but as an example of how a drive for any cure or human improvement has taken on hyper-funded business investment in research and competition. As such, I am citing the profit incentive for medical research. The two tied are not necessarily wrong until or unless we examine our motives.

I challenge and disagree with many theorists (or bioethicists) who may purport that it is better to separate any linkage of today’s genome and biological research with early twentieth century eugenics. I believe (as Rembis, 2009; Hubbard and Wald, 1999) that we continue to link behavior with biology and have hybridized these into “mental illness/health.” This umbrella term seeks to broaden medical diagnostics from which many industries may profit, namely pharmaceutical and therapeutic occupations. The DSM V is nearly big enough to take a bullet, and it will continue to expand so long as we rely upon a medical model as our only source of knowledge. As such, autism numbers will continue to increase within this model, not because of something environmental or biological, but because of how we imagine and create discourses.

It’s not looking good for autism from where I sit under this rubric, I realize this. We all know that autism, like many other cognitive disabilities, are diagnosed by observation for which we have created an extensive lexicon of disease and abnormality. Bio-markers become a shared lexicon infused with moral implication. Yet, we also know that there are many other ways of knowing and a plethora of disability theory is ignored in most discussions driven by journalists or medical communities. Also, let us not ignore the criminalization of behaviour (an example of moral judgement stirred and shaken with biology) as a reason to create new research business. In this, please test my theory – there will not be one news report of a criminal act that is not linked to mental illness today. I’m not trying to create a conspiracy theory, but there is a definitive financial drive for ameliorating many bodies, and we all take a part in creating the discourse. (Reinforcing discourses is another blog post).

I will agree with Rembis when he states,

“Any informed discussion of the limits of behavioral genetics research must take into account the historically contingent socially situated nature of impairment itself. Such an argument would not deny the existence of impairment. Instead, it would begin with a critical analysis of the social, medical, scientific and juridical discourse at the root of taken for granted classifications of impairment. This type of critical analysis is already taking place in some of the arguments concerning mental “illness” and mental health services …as well as those concerning the social applicability and general reliability of the results of intelligence tests “(Rembis, 2009, 592).

He also bluntly states, “The recent emphasis on genes stems in large part from experts’ drive to tap into the hundreds of millions of dollars made available primarily through NIH Human Genome Project, as well as through huge multinational pharmaceutical companies. There remains, however, a much deeper desire among scientists of the world to bring the vagaries of human reproduction and development under scientific control that continues to drive much of genetic research. Only when we begin to think critically about taken for granted categories of impairment and examine the history of eugenics in a new light will we be able to assess the implications inherent in current and future efforts to control human reproduction and behavior.” (594).

Genetic discrimination (Hubbard and Wald 1999) is already in our midst as the “agents of truth” – a term used to describe how we take the words of medical researchers and how we view them (Rose and Rainbow, 2006) – have already defined autism as a genetic abnormality. Note, that I don’t agree with Rose and Rainbow, however, when they state that biopolitics is not about eugenics as much as capitalism and liberalism (211). Contrary to their position that we need to develop new conceptual tools for critically analysing how biopolitics plays out, I believe that it is impossible to untangle modernity, capitalism and our propinquity to find biological causes for aberrant behaviour and mental illness – morally judged designations with supposed (bad) economic implications. This blog post does not do all of these concepts and arguments justice; however, parents and professionals must all challenge the reasons for the propensity for researching biological causes for autism and/or mental illness. Without doing so, we risk losing opportunities for creating a vibrant future where autism is accepted and where our children may live in peace with education, friendship and family. It is a point of fact that charities such as Autism $peaks spends less than 4% of its budget on services for autistic people (services is another blog post too). Far from being utopian, this thought represents a need for examining social mores in order to overcome the obstacles that prevent social inclusion…for every body. Also, I will agree that the body is under great transformation in terms of identity politics in the way we imagine it, and the other ways of knowing and imagining it can and does exist outside of medicine.

Recently, I am interested, as a woman, theorist and mother, in the lovely intimacy I share with my son as caregiving can be a very physical act. Touted as a burden by many charities and the like – including fellow parents who yearn to have an independent child – I have been grateful to be put into a situation where my expectations have been radically altered; where caring has become an important part of my treasured (ever-changing) identity. This has been created by the reality of caring and the mutually negotiated relationship I share with my son. Therefore, reading accounts of genetically ameliorating autism, or relentless and repeated suggestions that disability (often shoved under the “mental illness” umbrella) is biologically caused or wrong, is troubling for my son and I on many fronts, some of which I have outlined here. Perhaps the Globe & Mail writer Wency Leung may take some of these points into consideration. We need to imagine otherwise.

References:

Hubbard, Ruth. Wald, Elijah. 1999. The Gene Myth: How Genetic Information Is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators and Law Enforcers.Boston: Beacon Press.

Rembis, Michael. 2009. (Re) Defining disability in the ‘genetic age’: behavioral genetics, ‘new’ eugenics and the future of impairment. Disability and Society, 24:5, 585-597.

Rainbow, Paul. Rose, Nikolas. 2006. Biopower Today. Biosocieties. 1, 195-217.

The Creative Potential of Tourettes and Tics

Filed Under (Acceptance, Accessibility, Autism and Intelligence, Behaviours, Inspiration, Intelligence, Language, Movement Disturbance, Obsessions, seizures, Tics) by Estee on 11-11-2014

Adam’s body tics and his vocal tics now include an exceptionally loud OW! The vocal component began about a year and a half ago with grunting – I wrote a piece to be published about my perception and response to it for a peer-reviewed journal. As it was accepted with an editing requirement, Adam’s grunting turned to full-on screams and my attention turned to that as my role became to help him emotionally, but also amp up his accommodations and preserve his spot in school. This accompanied an angst at school which was swiftly resolved thanks to a number of people committed to him. As Adam’s communication by typing has concurrently advanced, it is an important conflation – between an expressive burst and the body’s struggle to produce it not only verbally, but also to coordinate every aspect of the body to produce it by typing. Part of Adam’s tics are evidently language and emotion related – charged and urgent expressions and also impulsive and involuntary. Both can occur. This is how I understand it so far and how Adam has expressed his experience to me.

You can imagine that struggling to verbally communicate, involuntary body movement, motor issues are challenging for him – a fellow who is bright, eager and intelligent. It is equally frustrating for him to be called on it or deemed behaviorally inappropriate or asked to be quiet; he was more often assumed to be not listening, learning or paying attention as he soaked up knowledge. Instead, he was discussed in terms of what others could see and understand – and a calling of attention to his tics seem to escalate them.

I welcome the following Ted Talk by Jess Thorn on the creative potential of Tourettes and tics, often experienced by people with other disability labels such as autism. If given agency over creative expression with them, how might persons often stigmatized contribute to our understanding of humanity? What kinds of knowledge that many of us who do not share these experiences might be shared?

Independence Before the Right to Inclusion is Not Equality

Filed Under (Accessibility, Activism, Aides and Assistants, Discrimination, Diversity, Inclusion, Law) by Estee on 11-11-2014

We at The Autism Acceptance Project will be addressing the following:

We need to discuss problems with autism programs, our communities (including schools) and inclusion. There is continued segregation and fissure within the autism community over the notion of recovery and independence. Our Canadian Charter of Rights and Freedoms, Section 15, states:

Equality Rights

Marginal note:Equality before and under law and equal protection and benefit of law

15. (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
Marginal note:Affirmative action programs

(2) Subsection (1) does not preclude any law, program or activity that has as its object the amelioration of conditions of disadvantaged individuals or groups including those that are disadvantaged because of race, national or ethnic origin, colour, religion, sex, age or mental or physical disability. (84)

It is, therefore, everyone’s duty to accommodate – equal rights means the right to be included. While Section 15 and other instruments exist and rights are stated, they are still not enacted. There are a lot of conditions for the participation in many programs, many of them made for the autistic population, and of course in our community-at-large. A recent court case cited this issue (Moore vs. British Columbia) whereby it was noted that remediation before the right to inclusion is not inclusion; this is in effect, discrimination. In fact, the term is adverse effect discrimination whereby the concept of remediation is a barrier to participation and inclusion. We can point to many autism services that segregate, punish, or attempt to normalize the autistic citizen as such. In Moore, this statement was made although not highlighted enough. The disability community must be involved in shaping the meaning of accommodation, and they are missing from the discourse in cases like Moore v. British Columbia, 2012. In short, remediation is not accommodation; the former can be viewed as a disciplinary term and the latter must be created in accompaniment with disabled people to enable disabled people. The case of Moore can be scrutinized in more depth regarding the ontological constructions in policy and law that continue to exclude people with disabilities in the school system and in other programs.

Problematic is our notion of independence as a criteria for participation and enabled (or supported) participation in the community. As a result, many autism programs, and of course universities and schools, maintain this barrier to participation. It happens when human assistants (appointed and/or approved by the autistic person) are not allowed to accompany autistic citizens; when children are segregated into autism classrooms; and when many folks who have significant challenges are not provided access under the assumption that they are not able because they are in need of support. Such assistance is akin to the deaf requiring an interpreter, however, our notions and associations around independence remain the foundation under which exclusion still occurs; such notions require our demolition. These conditions to participation are neither accommodation nor equality. This is also supported by Rioux and Frazee:

“Equality under s. 15 entails much more than simply ‘accommodating’ persons with disabilities into existing societal norms and structures leaving unscrutinized those norms and structures themselves. Substantive equality challenges the very existence of mainstream structural and institutional barriers, including the socially constructed notions of disability which inform them. For persons with disabilities, equality means the right to participate in an inclusive society. It does not mean the right to participate in mainstream society through the adoption of non-disabled norms.” (Rioux and Frazee, 1999).

If you attended the talks and film screenings in Toronto with the film’s subjects Larry and Tracy (Wretches & Jabberers) – autistic people who type to communicate and require assistance – it becomes clear(er) that most autistic individuals who are given access to assistance and communication devices with support can participate. It also becomes clear the levels of injustice that take place everyday for citizens who struggle with speech and physical differences. However, most of our therapies are built to make the individual as independent or non-autistic as possible. We require a standard (and law) by which service and assistance supports the rights of the autistic agent to be included. We know that many people will never “measure up” (as we like to think that they can be normalized through isolating intensive interventions) to become fully independent, but can enjoy life and participate given opportunity and access. By segregating autistic people and putting these conditions on their participation, we as a Canadian society are devaluing the autistic citizen.

We will be discussing ways and means to address this barrier, and call into question organizations (many of them autism organizations themselves who claim to provide services that are funded by the public purse) who provide a qualified inclusion – to those people whose bodies appear and behave as “normal” as possible. There will be thousands of autistic Canadians who will, as such, never achieve the quality of life that the Charter states, is their entitlement.

For further consideration and discussion, please view this video with Yvonne Peters, Gwen Brodsky, Ravi Malhotra who Discuss Inclusion After the Moore Case. This video provides some legal context for this discussion:

Reference:

Rioux, Marcia H. and Frazee, Catherine. (1999). The Canadian Framework for Disability Equality Rights in Melinda Jones & Lee Ann Basser Marks, et al., eds. Disability, Divers-Ability and Legal Change, Kluwer Law International. p. 89.

This is Our Halloween

Filed Under (Acceptance, Accessibility, Adam, Autistic Self Advocacy, Communication, Development, Family, Holidays, Joy, The Joy Of Autism) by Estee on 31-10-2014

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We got up a little earlier today to rush to get Adam’s makeup on for Halloween here in Toronto. Adam decided to be a happy bear, so we came up with Happy Panda – it’s also a story about mindfulness that we sometimes read. It just feels right to show a happy little autistic guy, a preteen no less, who types to talk and gets excited like every other kid about Halloween. Adam is part of the whole process in deciding what he wants to be. Since Adam started typing at the age of 4, and is now 12, he has become more able to self-advocate and tell us a lot of what it is like to be Adam.

Here he is (below) inspecting my make up job… I must admit I wasn’t sure if he liked it when it was all done… and I didn’t have time to discuss it with him as we were rushing out the door. But he seems to be thinking about it here:

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Alas, in this next shot, Adam is a Happy Panda posing for the camera. Today at his (inclusive) school he will go trick and treating around to each classroom. It’s raining in Toronto, so it is unlikely he will go out tonight with his dad… I’ll miss Halloween with Adam this year. It’s the first year ever I’ll miss it with him.

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I hope all autistic families will enjoy their Halloweens if they want to. I never believe in forcing our kids to do things that are expected, but at the same time, I also believe in inclusion and participation in ways that the kids can and want to participate. I always tried not to expect too much when Adam was little. We stayed in one Halloween when he preferred to hand out candies rather than going door-to-door. That remains a really fond memory because Adam chose to do this and he enjoyed it so much. Before he could self-advocate with words, I gave Adam an array of choices, making costumes that reflected his interests. Since Adam was deemed hyperlexic and loved numbers and letters, I stitched letters and numbers to his clothes and named him “Alphabet Boy” – indeed my kind of superhero. This year, it helps a lot in all activities to make up our own social stories so that Adam knows what is expected, and I have him participate in writing them by making choices before decisions are made. This can involve all the steps that are made from ringing a door bell to what to say, to how many doors Adam can knock on so he feels a little more secure about how the evening is constructed. It’s also part of why I like the process of making Halloween costumes (although I’m not that talented at it, I still enjoy it) because it gets him involved and a chance to anticipate and be a part of any given event.

Two years ago, he wanted to be a ghost, and we managed to make together a Tim Burtonesque version… he loved that one; in fact I think he’s channeling Tim Burton again this year! Here’s a photo of that costume:

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And another year, he fell in love with a cowboy costume from the store – he wore that one two years in a row:

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It’s been a joy to watch Adam grow and develop over the years. Having an autistic child is wonderful to me, the challenges included as they have encouraged me to think outside of the box. Let’s all make our Halloweens what we want or need them to be, and find our contentment with that!

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A Better Autism Awareness Month?

Filed Under (Ableism, Acceptance, Accessibility, Activism, Advocacy, Autism and Employment, Autism and Intelligence, Autism and The Media, Behaviours, Contributions to Society, Critical Disability Studies, Diversity, Inclusion, Institutions, Uncategorized) by Estee on 08-04-2014

I’ve been sitting back and watching. While not all things are perfect, I have to recall what it was like in Ontario 12 years ago when I was first introduced to this social phenomenon called autism. CNN had numerous reports on the “epidemic” of autism; the MMR vaccine was blamed; there were numerous reports of questionable remedies that put autistic children in harms way; there were hate blogs written about autistic people and parents who wanted to love and support their children.  The blogesphere was not yet syndicated and contained burgeoning home-made blogs by people labeled with autism and we learned a lot from autistics who wrote them – about activism, identity, the right to be who we are in every neurological way. Indeed, neurology is a term of the times which has redefined difference (neurodiversity). Although this is critiqued by many of those belonging to the disabled community as the new normalizing term (Lennard Davis, The End of Normal: Identity in a Biocultural Era, 2013) thereby losing its utility,  I suppose I belong to a group who believes that we might not have gotten to this place of questioning, and beyond an institutional disabled identity (i.e. segregated and isolated), without this renaming and reconceptualization. To further highlight Davis’ important question:

“If we are now living in an identity-culture eshatron in which people are asking whether we are ‘beyond identity,’ then could this development be related in some significant way to the demise of the concept of ‘normality? Is it possible that normal, in its largest sense, which has done such heavy lifting in the area of eugenics, scientific racism, ableism, gender bias, homophobia, and so on, is playing itself out and losing its utility as a driving force in culture in general and academic culture in particular? And if normal is being decommissioned as a discursive organizer, what replaces it?'” (Davis, 1).

Davis argues that diversity has become the new normal.He also makes an important point that there are some people who do not have a choice of identity, which, in my words, may dampen the concept of diversity for our community. In particular, disabled identities are not chosen. Perhaps we now have to think beyond identity and challenge the concepts of acceptance and community in a world where these lines are always expanding and contracting.

That said, I remember what my introduction was to autism. Mothers and fathers before me remember institutionalization. Parents advocate for a world where autistic children are accepted, even if in a neoliberal paradigm (in other words, while we can see its shortcomings, we still do many unpleasant things to survive). It seems the “strengths” of autism at least are earning a place at the employment line, which then perhaps allows our children to get an education and better services. Perhaps our kids will be understood for their sensory, communication and social issues and not be reprimanded or judged for them. All these seem like good things. I would like to imagine a world where we never forget – where many of the younger generation of ABA therapists and teachers have no recollection of “different” kids in their neighborhood suddenly disappearing. There is work to be done to educate people working in the field on the history of disability and institutionalization and how close we always seem to be to doing that again. Must we continue to ask why this is happening despite the advocacy for autism acceptance?

And finally, in Davis’ words:

“There is a built-in contradiction to the idea of diversity in neoliberal ideology, which holds first and foremost each person to be a unique individual. Individualism does no meld easily into the idea of group identity. And yet for neoliberalism it is a must. In a diverse world, one must be part of a ‘different’ group – ethnic, gendered, raced, sexual. It is considered boring if not limiting, under the diversity aegis, to be part of the nondiverse (usually dominant) group. So diversity demands difference so it can claim sameness. In effect, the paradoxical logic is: we are all different; therefore we are all the same.

The problem with diversity is that it really needs two things in order to survive as a concept. It needs to imagine a utopia in which difference will disappear, while living in a present that is obsessed with difference. And it needs to suppress everything that confounds that vision. What is suppressed from the imaginary of diversity, a suppression that actually puts neoliberal diversity into play, are various forms of inequality, notably economic inequality, as the question of power. The power and wealth difference is nowhere to be found in this neoliberal view of diversity….Ultimately what I am arguing is that disability is an identity that is unlike all the others in that it resists change and cure…disability is the ultimate modifier of identity, holding identity to its original meaning of being one with oneself. Which after all is the foundation of difference.” (Davis, 13-14).

While I acknowledge Davis, I find myself thrust into an acceptance paradigm that allows Adam to be in a classroom and in the community, however imperfect (requiring time, exhaustive and emotional effort, Adam’s emotional effort and his ‘trooper’ ability among it all) – and all of this based on proof of competence and ability as he counts money so fast that the adults in the room have to check to see if he’s right (he is). I think it is great if we can enable others to see autism as a way of being in the world – sensory difference as not behavioral belligerence; non-verbal disability as not an unwillingness to speak or non-intelligence. To go on: not looking at someone when they are speaking doesn’t mean that the autistic person doesn’t understand what is being said; not wanting or able to be social should not be isolating or a reason to segregate nor a reason to push one to be social just like everyone else. (So what I’m saying is that as activists and/or advocates, we are still at this place). There are still so many misunderstandings in a moment with an autistic person, and one hopes that this marketing will help. I mean, we all have to survive, right? Adam’s survival is no different than mine except that he is at a clear disadvantage despite “neurodiversity.”

While recent autism advocacy is far better than I can remember 12 years ago, it remains services and employment based (and I am not at all suggesting we don’t need to do this important work to discuss services and accommodations past the age of 21…but we need to discuss this also in a much larger context). A discussion of the inequalities about which Davis and others speak must also be a topic to discuss the bigger picture of what we mean when we talk about inequality. Another part of this discussion might be to discuss all the the proofs that an autistic person has to demonstrate before earning a place at the school desk and in the boardroom – and a discussion why these suggest human value. These may not acquire the immediate services that people need but they are important to our evolution. We can do this while continuing to mine the various meanings of purpose.

Beyond Mall Therapy

Filed Under (ABA, Accessibility, Aides and Assistants, Anxiety, Autism Theories, Autistic Self Advocacy, Behaviours, Communication, Community, Inclusion, Intelligence, Language, Living, Obsessions, Parenting, Safety, seizures, Sensory Differences, Transitions, Travel, Wandering) by Estee on 21-03-2014

I think many parents will agree that one of the most challenging things for families with autistic children are outings.  Adam’s anxiety and repetitive activities increase over his perceived threats and fear of change; he will need to check out the bathroom in every restaurant; know where every door leads. This of course makes outings difficult, and it has a lot to do with impulse. At this point in our lives, Adam has been exceptionally tense – and I want to add that this coincides with his development, awareness and abilities too. This is a really important point to make up front in order not to treat behaviors by redirecting them in meaningless ways (such as touching your nose to replace a hair-raising scream…this will just piss Adam off). One of the dangers with partially-verbal of non-verbal people, as we know, is that when behaviors start, there is a propensity to exclude or treat the autistic person as if they are not aware of what they need, or what they are doing.

This is where adaptive communication has become very helpful for us since November. Adam has been typing for many years, but most ABA schools will not support supported typing – this is so problematic for folks with movement issues which Adam expresses – Tourettes tics, seizure-like episodes (and seizures are much more complex than one initially thinks), and “stuckness” which is catatonia. These are some of the reasons for speech impairments in many folks – similar to aphasia. It’s not that they don’t think or understand or even “hear”what we say but rather the word-finding and expressive capabilities through speech are not available. However with typing, Adam becomes more fluent in his speech. With support, he becomes, eventually, a more independent typist. In the meantime, he writes, “my body is like an engine that doesn’t run continually,”and despite that he can type some things independently he has asked for our support. To not give it to him is seen by many as immoral…something to think about in terms of our own learning in how to support people to communicate in order to hopefully become more fluent and independent. (While I have issues with this latter notion as a neo-liberal concept, I acknowledge we are swimming against a tide here and in order to survive, Adam has to work hard to prove himself…something else to think about in terms of how we treat the disabled).

So, to go out when a person has frequent anxious or bolting episodes (the fight/flight response as we know it), now requires perseverance, patience and planning, and a respect for Adam’s ability to participate in his daily planning. It also requires our time in letting him assemble himself if he begins to meltdown. For example, while on our March Break at the beach, Adam needed to go the bathroom. If there is a loud hand-drying in the bathroom, he will become anxious and turn right around. This anxiety lingered after the visit, and he began to flop his body on the beach. I told him to keep walking and tried to distract him, but at this point, it wasn’t working. I asked Adam to sit down until he was ready again to walk. As we did, we began to feed the birds. This made Adam happy and then able, after 20 minutes, to walk again.

Similarly, a week before on the same beach boardwalk, something triggered Adam and he wanted to urgently turn around. I could not understand what Adam wanted or needed so I asked him to sit down and type with me. This was difficult and he wanted to get up and bolt. I said he could not get up until we knew what he wanted. As he began to type, he was able to say what he wanted faster -“hot air balloon.” At that point, I realized that there was a water tower that looked like a hot-air balloon far down the beach, however, I miscalculated just how far. As we began to walk, it was occurring to me that we wouldn’t get there on foot. But Adam was so happy and relieved to be understood, and skipped merrily alongside his grandfather and I. I began to say to Adam that  I didn’t think we would get there on foot, so at this point I was able to negotiate with him that we would go to dinner first and then drive by the “hot-air balloon.” Adam was able to have a nice dinner and also get to see his hot-air balloon on the drive home.

Today, my team are helping Adam on his outings with lots of preparation and photos and are working with me to practice outings with Adam in many places so Adam himself can feel more competent and less anxious. Every day while we were away, I insisted on taking Adam out, with someone with me for safety, because I fear that isolation is deadly.  This is where mall therapy begins but also has to end – so often, we only see autistic kids in places where therapists feels safe, and this sadly restricts the lives of many autistic folks. Some parents might be afraid to be stared at in public. This is when it’s better to have a card to hand out to people indicating that your child is autistic and you are working on outings. Or, if someone is exceptionally helpful, as I’ve experienced lately, send a thank you note if you can to support inclusion. While we may begin with mall therapy, we must move on quickly. As I was preparing Adam to see the animals today in the park, he typed, “seeing animals is getting very tiring,”and he asked to walk and take the subway instead.  This part of negotiation is also key to success for outings as people like Adam have a hard time advocating for themselves (although they do communicate with their behavior, which is largely viewed as maladaptive, sadly). I also have asked Adam how to support him in moments of need or meltdown where he wrote, “please be calm…” and indicated that these moments are also very embarrassing for him.  In addition to a bag of tools he has to help himself and cognitive behavioral therapy (which, by the way, is typically used on people who are verbal and are deemed “high functioning”‘… Adam’s ability to learn the concepts and techniques quickly rules out theories on HFA and verbal ability and the ruling out of such therapy for non-verbal people…I hope a researcher who presents at IMFAR will pick up on this as most of the people used in research study tend to be from the HFA/verbal group due to cost and time constraints…something to think about in terms of who we service, who we value, and how we treat autistic people).

So the question is whether the mall is used to simply used to truly help autistic people be included in the world, a step towards many outings and environments, or if it excludes people from being in the world. Yes, it’s a challenge for folks, and in the end, a person decides for themselves where they want to be. But if Adam doesn’t learn now as well as being able to advocate his choices while learning to negotiate with others, our lives will remain behind closed doors. While I know this is hard for Adam, I also know that he doesn’t want this.

 

 

 

Tomorrow is Convocation Day

Filed Under (Academia, Accessibility) by Estee on 15-10-2013

Tomorrow is convocation day for my Master of Arts in Critical Disability Studies in the department of Health Policy and Development at York University. It feels like a whirlwind as I had just finished my MRP and then launched into my first-year PhD study. I’m simply taking a moment to breathe before I teach my next class, wanting to think (and later write) how I ended up here. I had dreams of Adam being at my ceremony, but I checked out the schedule and it will be unbearably long for him. Instead, I ordered the video and we will watch it together. I still wonder what I can do for Adam, as a person with a disability; with the autism label. I have worked because in the end, I still hope. I hope for positive changes that will enable him, nay PERMIT him, to be in the world – be accepted in the world, as an autistic person. I don’t feel at all this convocation is about me, although I worked hard. I don’t think the convocation is an accessible event. In cases like ours, I wish Adam would be allowed to make noises, allowed to come up on the stage with me to accept the degree. Disability is still not as accepted in academia, in ceremony, as I would like it to be; as I hoped and envisioned. By stating that, I inch my way forward, in hope of change. And I use this meagre platform to say it again – that I did it for Adam and he in fact has earned it along with me. My next photo will be of Adam holding that degree with me. No achievement is accomplished alone.

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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.