Personal Interest and Academic Reserach

Filed Under (Activism, Adam, Advocacy, Autism and Intelligence, Communication, Community, Computing/iPad, Critical Disability Studies, Living, Politics, Writing) by Estee on 28-05-2013

The end of the day of Adam healing from the croup and us both watching repeats of Wretches & Jabberers for my thesis. Adam can’t help laughing at the scenes of Naoki jumping up and down to Rimsky-Korsakov’s Flight of the Bumblebee – flapping his hands, moving the window blind from side-to-side, opening and closing doors, and running up and down the stairs to then, finally settling at his computer utterly focused and well, communicative. I can tell Adam’s feeling better as he giggles and then afterwards decided to do some puckered-lip kissing practice on my cheek.

Watching these clips from YouTube are also very important for anyone wanting to discuss it. I would imagine we’re all concerned about Tracy’s living situation and want that to change. As I write an academic paper about a subject that I am personally invested in, I also feel a responsibility to my son’s community. I am also selfish and grateful at the same time – selfish in not wanting Adam or anyone like him to have to be in Tracy’s position as well as inordinately grateful to both Tracy and Larry and their supporters for going out into the world to do this work. We are all motivated by personal circumstances which enables our emapthy. I am hoping to articulate my personal interests and vulnerabilities in my own academic writing, where one is otherwise supposed to be, in a traditional empiricist sense, emotionally removed and (supposedly) objective. Others have discussed this as well – Behar in The Vulnerable Observer, and Douglas Biklen in Autism and the Myth of the Person Alone and recently this new paper by Andrew Bennet in this issue of Disability Studies Quarterly discusses the possibilities of our mutual vulnerabilities – as researcher and research participants.

I really appreciate this clip that comes in addition to the film, as I wanted to know more about Mr. Thresher’s situation. I don’t live in Vermont, but I do think that the issue should be a politically active one here in Ontario as our autism societies take up adult autism issues. How can we enable autistic people to advocate on their own behalf for their own needs? How can we support them? This film should be shown at every chance in discussing positive living situations outside of institutions and segregated shelters.

I also work hard to get Adam to type and use AAC and seek people to support Adam. It is frighteningly slow for people to believe that Adam can understand, read, and have the ability to type and both of us need more support that is difficult to find here in Ontario. I’ve been writing this blog since 2005 and been telling people he could read words, numbers and book spines since he was 11 months old. I find it really frustrating if some verbal behaviourists teach him the word “cat” over and over again so he can say it correctly when he’s been reading it since before he could walk. The autism curriculum must change to include education and academics in its programs to be truly supportive of the autistic person’s right to education.

In terms of typing, his school will support him visually, and I think because of the time I’ve spent typing with Adam with support, that he is able to type to some extent at school without it. Yet I think with better support he could do better there and I’m trying to teach people myself. If you are a parent, you know this is a labour. However, I can’t understand any longer, as Adam and I have also been informally tested (yes, that’s the doubt people have about autistic people) that Adam’s communication is his own, and that with the right kinds of supports and teaching, he could communicate better by typing. This is seen in the same way deaf sign language was once denied to deaf people in favour of lip reading and speaking. Yet, communication is also a right. To deny a person with a communication disability such support and access will become an issue for law and policy, but our important work for now as activists and educators is to keep showing the work of autistic self-advocates, such as Larry and Tracy, as well as autistic people who are prolific bloggers and writers, and to keep breaking down barriers within our own homes, communities and schools, one person at a time.

My last thoughts for the evening: Isn’t it better to support an autistic person in their autonomy rather than to fret about what level of dependence they are going to have on their families or in group homes? In other words, isn’t the support of autonomy and our mutual interdependence a much more empowering prospect for us all? (I have to add, I am not intentionally favouring those who are able or have the desire to type or use AAC. There are those who are not able to use it and we have to consider the people missing from this dialogue).

Part of my work wonders why such doubt exists regarding Adam and why we’ve had to struggle with so much resistance with educators and clinicians. I do think that Adam, like other autistic people, will dispel the doubts. But I also wonder if we have to ask ourselves what or why we doubt, exactly? What do we fear if people with communication disabilities can communicate via other means? Is this the right question?

Two Vulnerables

Filed Under (Adam) by Estee on 28-05-2013

When Adam awoke struggling to breathe yesterday, I felt awash with dread. It was noon. I let him sleep in because when I went in earlier, he was warm. By noon, I heard the barking cough – the seal-like sound gasping for air. His face was beat red and temperature burning hot against the back of my hand. As I fumbled my with my phone by his side to reach the doctor, I tried to keep him calm. In my head, I plotted to call emergency in the next few minutes if he didn’t get better. He did. I managed to get him to the bathroom and then to the doctor’s office.

“Sick!” he said in a croaked voice struggling to speak.

“I know, Adam. You’re going to see the doctor and you’re going to be okay. Now don’t cry.” I hated saying it as if I was telling him to be a brave boy, but I knew if he did, he might not be able to breathe again. His face was crying even if his voice didn’t.

Adam has a viral croup and like any parent, I’d rather have the sickness. Today he is marginally better, still unable to leave his bed. I am near him, writing my Master’s thesis while he rests and I’m attending to him. I am a single-mom and have fretted now and again about what I would do in case of emergency. As necessity is the mother-of-invention (?) I’ve found myself plotting in my head how to do things, who I could call in a pinch, the public services available to us if we need them. And now, I am writing my thesis about autism, I write keeping my son and his dignity in mind. Using every morsel of time in our lives to raise him and care for each of us, I can’t help always thinking of Toni Morrison writing around her baby’s spit up and how important were both aspects of her life.

With the croup one has to take prednisone. Adam hates taking medicine so yesterday, after I told him he had to take it to make him better, he listlessly tilted his head on his wet pillow with do I have to? in his eyes. Yet I felt his trust too, that he would, despite previous instances of resistance, do it this time. After he took the medicine, he looked into my eyes – I read it in part as thanks, as desperation, as the vulnerable side of a child’s love and need. Then he mustered a smile and pulled me in for a hug….

As of that last paragraph, Adam came into my room to sit on my lap and I noticed how long his legs have gotten and how I can no longer cradle him. Then he got up and said “put clothes on.” We both went to his room to choose some comfy track pants and a soft long-sleeved shirt. Time to go…

The Autism “Spectrum,” Assessed Identity, and Supporting Access…some thoughts

Filed Under (Acceptance, Adam, Autism and Learning, Communication, Computing/iPad, Identity, Spectrumism) by Estee on 16-05-2013

This photo is of Adam with his Grandma.

I know I don’t write about Adam that much these days. I’m always caught in ethical considerations about his right to privacy and protection versus the benefits of sharing stories. I work a lot with autistic adults theses days as well (am always grateful to have them in our lives and realize how sharing of information and differences of viewpoints benefit us all), and I also work and play every day with Adam. I juggle between my studies, re-growing work with TAAP and as his mom – teaching him after school when I can. Single motherhood brings it’s own worries – am I giving him enough? What would happen if I get ill?, among many questions. I do the best I can and I have to accept my situation. As usual, I digress…

Adam is typing on his own now, is becoming a trampoline champion with an excellent coach, and has a friend. The challenge and sorrow, when I feel any, is the isolation by comparison to other children, or quite frankly, the concern I feel when people ask me questions that are proliferated by the media about how “functioning” Adam is. When people ask me about Adam’s functioning level, I get to ask in return why that matters to them – I think it’s important to ask others in order for them to think about it deeply. I then usually respond that I love Adam as he is, and go on about what great person he is. Functioning levels are arbitrary assessments made by subjective observation – by an individual who thinks they know something about autism, but in fact, just follow a set list of criteria that continues to change. Frankly, the most valued professional advice I would receive is the answer “I don’t know” and someone who considers Adam’s unique needs and strengths. Also, permit me to meander, it should never be an assumption that autistic people prefer to be alone. This is not fair – all autistic people are different and most express a profound loneliness. As for spectrums and functioning levels, this discursive dialogue must end if we truly value all autistic people.

In other words, there are no prognostications that are accurate. Ask any autistic adult and read through their psychometric assessments and old IEP’s and they’ll have plenty of comments – none of them positive. In fact, I am very concerned about the material reality these stacks of binders (recording bowel movements and the like) get absorbed by an autistic child regarding their identity and later, their self-narrative. I often think of taking all the binders I’ve kept over the years, papers, assessments and do something with them – no not burn them – but make an installation regarding this question: Shouldn’t we as parents be concerned about a forthcoming identity crisis as our children are told what they are by a mere label that describes virtually nothing about person-hood and individuality? If I could turn the clock back eleven years, what would I change?

I support Adam’s development and person-hood – his right to access and individuality. Further, and I have to keep saying this, it disappoints me when autistic children are not allowed to go to various programs with an aide worker. An aide worker enables many to contribute, work, participate, and feel a more a part of our community. While I cannot predict what level of assistance Adam might need when he gets older, for instance, this is besides the point – the issue is the right to access. Our autism committees and charities and governments must start considering these rights as opposed to simply believing that autism can be cured and kids can become normal with enough therapy. Instead, when we consider the value of people, we have more chances of seeking education after the age of 21, opportunities for vocational training, college, and university. More creative strategies for living situations can be considered such as co-living, assisted independent living (therefore interdependent living), micro-boards and aide workers and educators can also be treated with more respect as valuable assistants to autistic individuality and right to choose. Strategies for the latter entail visual supports, AAC, extended time, patience, teamwork.

Back to Adam…he is partially verbal and this is growing every day now as I watch him also grow taller. He is enabled more as he types a first word which seems to prompt the rest of his sentence. Some days he’s more chatty than others, which seems to be common for many partially verbal autistics. Through patience and repetition, Adam has begun to take care of himself. Adam can talk on the phone a little longer, dial his grandparents, get dressed, brush his teeth, and ask me where and what questions verbally, that is, on the more verbose days. I guess I’m saying this for all the years of misunderstandings by parents that autism acceptance means just letting a child sit around all day and do nothing. This to me is also an ableist concept which presumes that autistic people can’t do anything at all when the truth of the matter is that everyone has a different situation and we address each child uniquely and with respect.

I think many teachers and coaches have enjoyed their own teaching successes with him. I also think parents must work harder to readjust their expectations to support education and inclusion. Teachers cannot succeed if we have unreasonable expectations of normalcy and, as parents, we should be startled at this word as it discriminates our families. As we accept this we should also not accept the unfair exclusion and segregation of autistic children and the lack or regard for their education! In this, education will also have to adjust and I expect it will as computerized learning is becoming more popular – where children can be taught online and monitored and facilitated when needed. The potentials of the Internet and computers have not yet been fully tapped and could change the face of individualized education as well as citizenship. As commerce takes place online, we are also looking to the Internet for online voting – the last bastion, arguably, of citizenship. It was Singer (1999) who said “[t]he impact of the Internet on autistics may one day be compared to the spread of sign language among the deaf (1999:67). Alas, however, let’s not segregate autistic children into a room full of computers. We all need human interaction. Also we need to consider this by Alison Sheldon (2004):

“There is a small but growing body of work within disability studies that emphasizes technology’s ‘double-edged nature’ (Oliver, 1990) and stresses that it can be ‘both oppressive and emancipatory, depending on the social uses to which it is put’ (Gleeson, 1999:104).” (Sheldon, 2004: 157).

Sheldon suggests that some of the barriers to access include its cost. “We must not be distracted…into denying the socio-structural origins of the problem. Access to technology is not simply a technical issue with technical solutions. The inaccessibility of technology is just one more symptom of disabled people’s continuing oppression.” (157).

Also, to balance this drive towards access to technology, Sheldon states:

“…in the current political climate, the increased use of Internet technology as a means of disseminating information may have adverse effect on other means of information provision. The unconnected majority of disabled people may find that accessing information (and indeed other consumer goods) in traditional ways becomes even more problematic as these facilities become available online. Thus, the Internet is not a panacea that many suggest. There is still a need for appropriate and accessible information to be disseminated to disabled people in other ways, or the disabled community may simply become yet more polarized.” ( 157).

As I suggested when the iPad became popular for autistic children in schools, we cannot expect it to replace teachers, parents, the knowledge to teach autistic people how to communicate by AAC and/or supported typing. Technology should not become another means to segregate.

Finally, to end today’s ramble, it’s time for us to reconsider the spectrum concept. It’s based on a hierarchical system of who is better functioning which is discriminatory in so far as it implies whose life may be more valuable than others. It effects the way we educate, include or exclude, and keeps autistic people from obtaining fair treatment and equality of well-being. And, after all, none of us can predict the future and autistic people do not “fit” neatly into the high and low functioning paradigms.

References:

Sheldon, Alison.(2004). Changing Technology. Disability Barriers – Enabling Environments. (John Swain, Sally French, Colin Barnes, Carol Thomas, eds). Sage Publishing.

Singer, J. (2003). Foreward: Travels in Parallel Space: an invitation, in Miller, J.K. (ed.) Women from Another Planet: Our Lives in the Universe of Autism. IN: Dancing Minds, pp. xi-xiii.

Non-Verbal Autism, Identity and Power

Filed Under (Ableism, Communication, Uncategorized) by Estee on 14-05-2013

The Autism Acceptance Project (TAAP) will post a new announcement on its website about its forthcoming work and formation of a new board of directors. TAAP is an organization that is directed by autistic people, and facilitated by non-autistic supporters in order to reflect the concept of inclusion. As a mother to a child who has communication challenges, I am personally invested in autistic rights for the non-verbal populations. TAAP will encourage research and activities to enable the question of who is missing from autistic organizations and how might we reconsider the manner in which we organize in order to equalize power imbalances. For the aphasic community for instance, this is addressed. Yet the manner in which we have constructed (and essentialized) autistic identity remains problematic if we do not consider the broad scope of individual experience. For example, while some people (autistic or not) prefer to be on their own, other people do not wish to be. In autism, we tend to apply broad strokes to describe how an autistic person lives and thinks through labels. There are dangers in suggesting that all autistic people “prefer to be alone” as much as we assume autistic children need to be yanked into a neurotypical social world in order to be valued and included in society. The truth is in there somewhere, but usually between the two extremes. The point is, not every person is the same and we need to account for this in autism as we would for any person.

As part of my doctoral research, which will begin this fall, I will be studying emancipatory research and social organization for our community. With autistic folks, we hope to assist clinicians, therapists, educators, parents, caregivers to support autistic rights as one of our projects.

Allow me to share some extensive quotes from Carole Pound and Alan Hewitt’s Communication Barriers: Building Access and Identity for your consideration. I do hope that many others will engage and invest in research for our non-verbal/ communication-challenged populations:

“…an interesting additional challenge is that if language is the core of what makes us human, and the primary means of exploring new narratives of illness and disability, how do individuals negotiate personhood or the development of changed identities following sudden loss of speech, understanding, reading and writing? How does your own and others’ difficulty with understanding and using words impact on your ability to talk about and question fragile new forming identities with others who are also grappling with a concept at the edge of words? Given these difficulties, how much greater is the risk, as a language-impaired person, that your personal disability narrative will be hijacked by outsider stories constructed by families, professionals, researchers and the media?” p. 165

“Many people explore concepts of disability and identity by being exposed to and engaging with discussion of alternative representations of disability. New stories of disability can challenge internalised stereotypes offering a precious escape route away from the set of ‘tragic stroke victim’ or ‘courageous little fighter’ paths purveyed by mainstream media and disability charities. The means of accessing new narratives is not obvious when academic texts, articles, and website stories are hidden behind a veil of language.” p. 165.

“Meeting, supporting and just ‘being’ together are powerful experiences which, in many respects, transcend words. Meetings between people who share a common communication disability, but who each individually require different levels and types of communication support, are not without challenge. Negotiating communication support from non-language-impaired people, such as relatives, volunteers or health professionals, is an option but one which runs the risk of meetings being dominated and controlled by those who can speak and write. Notwithstanding these challenges, self-help groups remain a rare bastion of power and identity for many people with aphasia.” p. 165.

“Access to a sense of personal and social confidence, to a more certain identity, is for many people a pre-requisite to asserting one’s voice, to feeling you have a possibility and a starting point to interact with power. So language, identity and power become crucially interwoven. Without language, it is very hard to grasp the core of identity, and without language and identity it is virtually impossible to hold and interact with power. How, then, can those who possess intact language and power develop skills, environments and structural supports which acknowledge this imbalance and model more equal power relations?” p. 165

“Those charged with implementing communication access need to think creatively about ways of engaging people, processes, environments and infrastructuers with new communication practices, practices that attend, non-tokenistically, to the diversity of communication.” p. 166.

Some of the ways the authors suggest for assisting and organizing for those with communication disabilities are:

-training for those without communication disability;
– including ‘interpreting’ skills enabling non-communication disabled people to adapt their spoken and written language to make it accessible, and training in monitoring language for clarity and flexibility;
-supporters who offer one-to-one interface between people with and without language impairment. (p.166)

“At Connect, for example, trained communication supporters facilitate inclusion in meetings by going through papers at pre-meetings, supporting the person with aphasia to follow conversational exchange and ask questions, by taking notes on line and by spending time after the meeting to review ideas, concepts and decisions. Communication access training focusing on written documents is a further aspect of developing communication skills, supporting everyone in an organization to reword complex, abstract documents and information into clear and concrete language. Training also supports people to consider format, layout and use of pictures that most readily support communication access. The situation where everyone in the organization, from therapist to receptionist to researchers to finance director, takes responsibility for monitoring and changing their use and presentation of language is a healthy first step towards inclusive communication.” p. 166.

In the autism community, it’s just as important to look to other community’s that share similar challenges, and to read what they have to say. Often in our community, we tend to get locked into autism labels which confine us to consider that autistic people, with “different” behaviour, cannot be capable of understanding language, although we have enough research and personal accounts to seriously challenge that assumption. As researchers engage in ways to “enable” autistic people to communicate, which is important, we also have to consider the ableist dimensions of technology and language training. We have to consider that power comes from those who can communicate, and to rethink our organizations and the way we do and do not provide access. As suggested, communication seems to assure identity and power. In its absence, does it mean that an communication-impaired person is not a person? How accessible is current technology to autistic people? What are the barriers to access which include financial issues, attituidinal issues in AAC provision? What about the way we enable or disable a different way – perhaps we can coin it an autistic way – of information gathering and language construction (or any other kind of construction such as art, the way information is gathered, learned and expressed)? We tend to assume so much about how people should be and it may behoove us to think that neuro-normative ways could very well have its own limitations. Perhaps its time to cross borders.

Reference:

Pound, Carole, Hewitt, Alan. (2004). Communication Barriers: Building Access and Identity in Disabling Barriers – Enabling Environments. (John Swain, Sally French, Colin Barnes, Carol Thomas, eds). Sage Publications.

Upcoming Events and News:

Filed Under (Disability Finances/Benefits, Inclusion, Law) by Estee on 10-05-2013

TORONTO, May 7, 2013 – The Law Commission of Ontario (LCO) is beginning a new project at the request of the Ontario government to address how adults with developmental or mental disabilities might be better enabled to participate in the federal Registered Disability Savings Plan (RSDP) created by the federal government without an expensive competency assessment.

The RDSP is a savings vehicle to provide future support for persons with disabilities. Parents or guardians may open an RDSP for a child. However, adults with intellectual disabilities and others whose competence may be an issue may face challenges in opening or withdrawing from an RDSP without undergoing an expensive and lengthy competency process. “We are extremely pleased to be asked by the Ontario government to undertake this project,” said Professor Bruce P. Elman, Chair of the LCO Board of Governors. “It reflects recognition of the high quality of the LCO’s work and its contribution to law reform in the province.”

The LCO will draw on work in two prior projects in which it has released final reports, its Framework for the Law as It Affects Older Adults and its Framework for the Law as It Affects Persons with Disabilities. It is currently undertaking a large project on capacity, decision-making and guardianship from which the RDSP project will benefit. The LCO will also call on the relationships with legal and academic experts and community members developed in the process of the older adults, persons with disabilities projects and capacity projects.

Launched in September 2007, the LCO is funded by the Law Foundation of Ontario, the Ministry of the Attorney General, Osgoode Hall Law School and the Law Society of Upper Canada, with additional financial and in-kind support from York University and support from the Ontario law schools. It is housed in the Ignat Kaneff Building, York University. It operates independently of government to recommend law reforms to enhance access to justice.

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Aussi disponible en français

Patricia Hughes
Executive Director
Law Commission of Ontario
(416) 650-8406
LawCommission@lco-cdo.org

Other News:


Inclusion Day at Ryerson University: July 6, 2013. or visit www.taaproject.com for a better view:

A New Kind of Autism Lobby: A Proposal

Filed Under (Ableism, Acceptance, Activism, Advocacy, autism, Autism and Intelligence, Autism and Learning, Charity, Communication, Community, Critical Disability Studies, Language, Organizations/Events, Politics, The Autism Acceptance Project) by Estee on 09-05-2013

I’m writing my thesis and am hankering to blog – so many things on my mind with the recent Ontario budget proposal, the ever-so teensy weensy allowance for an individual on ODSP to take home a couple hundred bucks a month and the way we may have to reconsider how we advocate for support as autistic families. Can I say at least it wasn’t cut altogether as was the original threat? Also in the budget is a brief mention of autism services and a reduction of wait-list times for those in urgent need. I’d like here to write a post for all of us to reconsider what all autistic people and families need, and how we have to lobby.

I’m writing my thesis on autism advocacy, in particular, among non-verbal populations. There are wonderful contributions to this already out there to be cited. Also, The Autism Acceptance Project (TAAP) is in meetings, where the autistic population is setting the agenda and I am a facilitator/organizer (also we hope to announce an upcoming event soon). I’ve thought long and hard about the work of autistic folks and re-evaluate my role as a partner and ally to Adam and others. The most fundamental concern I have that will effect all autistic people and their families is autistic rights – to be viewed as valuable citizens; this means that the “spectrum” concept of functioning does not preclude rights and that all people are equal and valuable. This is addressed in substantive equality, where differential treatment must be sought for many to achieve equality (Rioux, 1999). In other words, many disabled people require support and accommodation to participate in their chosen ways in society. What is particularly worrisome to me as a parent of an autistic child, is the lack of access and lack of education. Yet, I also see our traditional education system crumbling, which to me, provides a new opportunity to finally give access to education for everyone. This post proposes not only services to alleviate families, but many opportunities for autistic people of all ages.

Here, I see potential for those who are also ABA lobbyists (I will specifically mention this group since ABA is cited in all government literature now and as I predicted in 2005, it would be the only service available to autistics) to change their drumbeat from tragedy to substantive rights. I’ve cited recently the Jefferey Moore case in British Columbia (2012) wherein it was stated that the notion of remediation risked adverse effect discrimination. I would argue the same – that when we believe we have to remediate an autistic individual, or any individual with a learning disability, before allowing them access to school, or to an education, then this is a fundamental oppression and devaluation. ABA schools can consider integrating academics into their methods as well as any other therapies out there, thus supporting, enabling, respecting (instead of normalizing) autistic being. That Augmentative Assistive Communication (AAC) and other supported communication techniques is not considered a right to communication should be an outrage to us all. At one time, the Deaf community was not allowed to sign! Now, the same thing is happening to the non-verbal autism community. The most fundamental right is the right to access communication. Yet, teachers also have to learn how to support an autistic person to use them, while also considering the autistic learning style (there is research out there you can find easily on this). There are enough autistic independent typists as well as teaching methods available. I could go on — video monitors, white boards, computers – these are fundamental for autistic learning and we all have a wonderful opportunity to learn to support autistic individuals! My question to educators and supporters, how can we change the way we do things to support autistic rights?

Back to the the right to education – music, art, math, science, geography – all of these are fundamental to an individual’s quality of life. Adam is autistic and has a curious mind. When he is introduced to new topics, they may be hard at first if they are taught in traditional ways, but as he learns he becomes more interested, proud and excited; doors open and he wants to learn more! Should an autistic person in a Verbal Behaviour or ABA program be denied access to academic material when they have read the same word since they were a toddler? Or, can this new material be integrated within a program? How creative can we be?How can autistic children be allowed access to their own interests and material and how can teachers facilitate their continued learning of what interests them? These are also fundamental rights – the right to choose and to follow one’s own path. While it has been cited numerous times that everyone – disabled and not – can benefit from an individualized approach to education – it as also been deemed difficult in the traditional system where teachers have been the gatekeepers of knowledge.

I was turned on recently to Sal Kahn, who has created a series of educational videos on YouTube which are utilized by some classrooms. Some teachers are reconsidering their role as facilitators instead of lecturers at the front of the classroom, monitoring a child’s work on the computer using Kahn’s lessons, and then stepping in to help when needed. Online learning can be very effective for autistic individuals and must be considered if we are to enable a future of autistic participation and contribution. This provides fantastic opportunities where video learning and technology – such as Mindcraft – are enablers – autistic people can build in this program, make art and new worlds, and this can be a monitored learning program (and many do which attests to innate autistic intelligence and ability). Online friendships and self-advocacy, as reported by many non-verbal autistic individuals, have also enabled better socialization skills in virtual and real time. How can rethink such spaces that are already at our disposal? How can we allow for autistic work to take place also on autistic terms?

We have to reconsider these spaces from traditional ones to creative ones where all people can participate. At the moment, I can say that while I work to have Adam included, he is mostly segregated – goes to school, goes to a few programs with an aide worker which thankfully enables him to participate. Within the system at our disposal, we work with Adam’s team to provide him the best we can and we are all learning. But this is what I ask of all Canadian society – at least give Adam, and others, the opportunity to participate. To-date, he is not allowed. Even trying to get Adam into certain schools is fraught with traditional testing – not allowing him frequent pre-visits or adapting work in formats that he can best respond to. All I can say is, the world is losing out too for Adam can give back so much.

As I consider my daily life as Adam’s mother, and how my heart wrenches for him – I at least want him to have choices. This drives my work towards a more inclusive future (which may require specialized education in the real sense of education for his future – not sequestering, normalizing and presuming incompetence) for our children and for families to support this, this also traverses to the arena of advocacy with such questions as: What of my role as his parent and an “autism rights activist?” How can I, as a non-autistic person who is used to traditional hierarchical boards, committees and organization, become familiar with an alternative way of organization and allowing a new space, or room, for autistic self-advocates? How can autistic people enable us when some of us are listening? What about virtual spaces and how might they be maximized? How can we allow for dissent and debate that reflects true democracy and recognize that not all autistic people feel the same way, not all people require the same supports, and not everyone will agree? What must we recognize in ourselves as neurotypical teachers, parents, therapists, caregivers and charity organizers in stepping aside and lending a hand to create this space? In speaking of charity and it’s historical role of “handing out,” how can we build communities that support self-advocate needs? In one sense, I truly understand the need for autistic people to have this space, and predominant “voices,” if you will, but we also all have to recognize the important role of allies and parent supporters and educate families about the history of the autistic self-advocacy, and its fragility. We cannot afford to lose the ground gained by autistic-self advocates! Autistic people also have to allow for us to become political facilitators alongside autistic people without us more verbally loquacious dominating the agenda or “speaking over” autistics. Autistic people can teach us patience and learning to listen without speaking over. Let me ramble here by making another comment – research teams and funders have to recognize this urgent need for emancipatory research that requires much patience and time, and make allowances for it.

Here, I acknowledge the independence via interdependence model that I write a lot about – that we tend to advocate for complete autonomy and independence that drives our therapies and expectations for autistic people before giving them full value and citizenship. Yet when we truly look at how interdependent we all are – on our families, on technology, on a service system, none of us are independent. This is the area in which we need to discuss when we talk about autism services – not a cradle to grave service where we put autistic people away, but a collective economy of support where autistic people can also contribute and where we do not view responsibility as something tragic. I can only think that in North America this notion is strongest – when I lived in Europe, families often stayed in the same home all of their lives and supported one another. Part of me can’t help but think that this notion of supporting our children into adulthood is a construction of the industrial revolution – where children were sent into factories to work. As we see those structures crumbling, I hope we can reconsider that supporting one another should be something to be grateful for, not a tragedy. Will our quality of life not improve when we know that all of us who need more support at various points in our lifetimes, will also be respected, supported and not be made to feel guilty or less than for it?

Finally, I can think of all the “job creation,” for autistic people and support workers alike when I think of Ontario’s new proposed budget. Yet as long as we are wedded to this false notion of “independence,” we might continue to build cities which isolate everyone. For certain, this is the ultimate paradox – I think we all feel isolated in many concrete jungles, and we need a call to building collectives and communities which utilize and respect the varying contributions of all citizens. To respect human variation and possibility for re-building, I draw on Jennifer Sarrett’s Autistic Human Rights: A Proposal:

“[H]uman rights are to be enjoyed based on fundamental frailty and vulnerability inherent within the state of being human. By focusing on vulnerability, a state that all people experience at various points in life, disability and difference becomes an experience that can tie all humans together.” (2012, Disability Studies Quarterly, unpaginated)

Also, quoting Eva Kittay, Sarrett includes that while not all people are equally vulnerable, that is, some people are more vulnerable than others, it does not mean that the more vulnerable are less worthy or entitled to justice, equality and human rights:

This principle, in contrast to the others, would not be based on our equal vulnerability, nor on our possession of rationality, a sense of justice, and a vision of our own good. Instead, it would be based on our unequal vulnerability in dependency, on our moral power to respond to others in need, on on the primacy of human relations to happiness and well-being.” (Kittay in Sarrett, 2012)

Sarrett further states that,

“human rights do not have to rely on a single doctrine – dependence or fragility or oppression or humanness or capability. The autism-based model described here is built on a foundation of dependence, individuality, and valuing human diversity, allowing for the inclusion of the entire sphere [note: she uses ‘sphere’ instead of ‘spectrum’ which she considers ableist] of cognitive, intellectual, physical and psychiatric traits within the human condition. Accounting for and respecting variations in the human state are central to the ongoing and dynamic process of developing human rights models most effective for any time and place. Any model of human rights should be in constant conversation with contemporary issues of diversity, medicine, law, and advocacy. Thus, all models…should be subject to alterations and updates to ensure the most acute and powerful application in every community and for every person.”

She notes that while some positive rights have been granted for education and health care, that the autistic rights model, fashioned after civil rights, has difficulty with the promotion of negative rights which includes the right to assemble. Sarrett says that negative rights are integral to this inclusive model of human rights, but self-representation and advocacy can be difficult for many non-verbal advocates who have assembled more easily online, and find real-time meetings and interactions very difficult. This asks us to reconsider how accessible our boards, committees and systems and how they enact as barriers to many autistic people. How might we re-organize our organizations? I, for one, believe that the Internet provides the future possibilities for the democratic process.

Reference:

Sarrett, Jennifer (2012). Autistic Human Rights: A Proposal. Disability Studies Quarterly. Vol. 32. No. 4.

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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.