Aide Workers, duty to accommodate and autistic students in higher education

Filed Under (Acceptance, Activism, Inspiration, Law, school) by Estee on 23-01-2013

I have an autistic son who is bright and who requires many accommodations in order to fulfill his Canadian right to an education. At my university, the concept of independence and work overrides the need some accommodations that are required for many disabled individuals. Drawing on my graduate student experience, where we share ideas in class discourse, where we write in dialogue with ideas expressed in other articles, it becomes immediately apparent that none of our work is truly original. Ideas are collaborative. I help my colleagues figure out things and they help me. I’ve never been happier.

The Canadian Human Rights Commission invokes the duty to accommodate concept:

The duty to accommodate refers to the obligation of an employer or service provider to take measures to eliminate disadvantages to employees, prospective employees or clients that result from a rule, practice or physical barrier that has or may have an adverse impact on individuals or groups protected under the Canadian Human Rights Act or identified as a designated group under the Employment Equity Act. In employment, the duty to accommodate means the employer must implement whatever measures necessary to allow its employees to work to the best of their ability. In the provision of services, the provider must implement whatever measures necessary to allow clients to access its services. Unions are also obligated to facilitate the accommodation of the needs of their members by not impeding the reasonable efforts of the employer to accommodate an employee. The duty to accommodate recognizes that true equality means respecting people’s different needs. Needs that must be accommodated could be related to a person’s gender, age, disability, family or marital status, ethnic or cultural origin, religion or any of the other human attributes identified in the two federal acts.

(From Canadian Human Rights Commission website).

It takes work to express how a human aide worker is a necessary accommodation for many people, and for the purposes of this blog, autistic people. What can an aide worker enable, in this case higher education? S/he can help take notes, rearrange assignments in tandem with a professor to enable the student to create work and respond to it, assist walking to and from various locations (I am thinking of a few people I know who are scholars and who require such assistance), organize deadlines and assist with a confusing array of university deadlines and procedures. I myself need lots of help with this. Yet, there is a perpetuating myth that I am an independent scholar; that somehow I exist in a vacuum and am able to navigate all on my own. I can tell you that this is surely not the case and thank goodness it is not. In my Critical Disability Studies classrooms, I share and gain knowledge and insight from people who are blind, autistic and who are deaf. We have note-takers in our classrooms, guide dogs, wheelchairs and ASL interpreters. As I consider the latter, it seems reasonable, in the duty to accommodate notion and the “reasonable accommodation” notion in the Ontario Human Rights Code, that human aide workers also be permitted in classrooms.

Yet, Ashif Jaffer was not permitted to stay at York University (see Jaffer v. York). He is now at Ryerson. At no point in time, reports his mother, did she ever imagine Ashif unable to attend university. I have always felt the same about my son Adam. I do not think that human development is linear as a result of having him in my life and meeting all the people I’ve met. I myself am not a linear learner and I don’t do well with age-imposed deadlines (eg.; one must achieve X by age Y). I am attending grad school later in life. Are we not the result of a post-industrial era? Must we leave school and get a job at eighteen? Of course not. We know that this has changed.

I urge you to watch the BBC report of Ashif Jaffer and his work at Ryerson here. In so watching, I hope you spend the time to think about, and perhaps if you have the time, to enter into a dialogue here about what “reasonable accommodation” means to you? Would you share your thoughts with me and with others in order to help? What are your visions for your “severely autistic” or what-ever label you might have, child? I also do not wish to suggest that college or university is the holy grail of human achievement. This would of course perpetuate the notion that all people must achieve (in the same fashion) it to be valued. This would contradict the achievements made by the Canadian Charter of Rights and Freedoms and the Human Rights Commission and substantive equity. We do not wish to lose the gains we try to make by suggesting that all people must be the same. Rather, what might we achieve in our quest for such accommodations (think also of our public school system) on the different and equal premise. For this, also see the Supreme Court of Canada’s recent decision Moore v. British Columbia. I look forward to sharing more with you, and you with me, on our work to get people with autism the education and inclusion they so deserve. I shall be writing much more on this topic and… thanks for sharing!

The NRA, Mental Health Stigma, Blame, Services and the State

Filed Under (Activism, Disability Finances/Benefits, Discrimination, Government Services) by Estee on 19-01-2013

Do you need autism services? Here’s a thought on the NRA and their blaming (and stigmatizing) of people with “mental illness” (the term in and of itself is problematic). I strongly urge you (and applaud) Paul Applebaum’s response (he is from Columbia U). A psychiartrist himself, he notes that statistically, people with mental health issues are not inclined to violence. Yet, society seeks someone or something to blame and the NRA is leading the way.

On with my thought. If you have registered your child in autism services (think Adam Lanzer as I continue to write and that violence just a few weeks ago was blamed on autism) your child is on the state roster. If groups like the NRA succeed in having outside “experts,” who are never experts really, report to the state who is at risk of enacting violence, lots of bad things can happen to your child or adult family member with autism, as well as you as a parent. This is the complex situation with needing support for enablement versus how government support can turn against us.

Now on to more stigma and Margaret Wente of the Globe & Mail. First, why does she still have a job? On the cover of Globe T.O today is Chris Spence, the director of the Toronto District Board of Education who plagarized his speech. He was fired. Margaret Wente, also found out for plagarism, still has her opinion column job at The Globe. How do other hard-working journalists feel about her cheating? I for one have had enough of her naivete. She has written one too many comments on autism today in her foolish column on The Awful Truth About Being Single, mentioning that the only people who don’t mind being alone are autistic and asexual people. Another Wente blunder, not to mention a discriminatory remark that can further isolate people with autism who want to be social but find doing so with typical individuals often difficult. I think it’s time Ms. Wente get an education on disability rights and meets a lot of autistic people before she continues to write about things she doesn’t know anything about.

To end my little post today is a quote from the Court in the Granovsky decision:

“Exclusion and margainalization are generally not created by the invidiual with disabilities but are created by the economic and social environment and unfortunately, by the state itself.” (From Ena Chadha’s “The Social Phenomena of Handicapping” in Elizabeth Sheey’s Adding Feminism to the Law: The Contributions to Justice, Claire L’Heureux Dube, Toronto: Irwin Law, 2004)

Disability Issues and the CBC

Filed Under (Media) by Estee on 18-01-2013

I am finding myself listening to CBC Radio One every morning. I would like to applaud the CBC for dealing with one of Canada’s most pressing human rights issues – that is the stigma of people categorized with “mental illness,” “autism,” and “people with disabilities” as the most devalued of our citizens. I hope for continued coverage on legal, policy, attitudinal and inclusion issues and listening to the perspectives of the disabled in our community, and allies coming from a critical disability perspective.

Autism and Work

Filed Under (ABA, Employment) by Estee on 17-01-2013

Listening to CBC Radio 2 this morning is a special report on autism and work. Interviewed is Thorkhil Sonne, Chairman of Special People Foundation. He has built an I.T. company, Specilaisterne that I wrote about a few years ago which hires autistic people. Citing some of the skills that belong to some autistic people – attention to detail, pattern-recognition skills and honesty – Sonne makes a great case for why he only hires autistic people.

It is no wonder that we must think about creating jobs for autistic people. In reality, we live in a labour market economy where making a living is a necessity and independence is highly valued. Yet, there could be some future challenges that we need to address when creating such opportunities lest we harken back to the Poor Laws and work houses for the disabled that have lead to sheltered workshops that still exist in Canada today where a “worker,” is paid thirty cents an hour. We are talking true sweatshops that are in operation right now in Canada. Sonne seeks to better that but there are still issues that we as a community must continue to discuss. That we live in a market-economy in the first place will challenge the equity notions that I posit.

First off, let us not reify autism and its skills. Autistic people have a variety of skills that are indeed useful in market economy as Sonne mentions. My concern however, is that the general population will now view ALL autistic peoples being the same. All autistic people are “love computers, are good at detail and are honest.” Such overgeneralizations can serve to further discriminate against individuals with autism.While applaud these needed efforts to provide equal pay for equal work, this does not preclude further discussions about our socially-constructed ideas regarding autism and people.

Many good folks are working hard to provide opportunities for autistc individuals. We must support these efforts while at the same time, bring these issues that continue to this day, to light. Autistic individuals are at risk of abuse in the workplace. Notions about perserverence where “typical people” don’t have the same attention, risks overworking the autistic individual (I’m thinking of Chinese workers here and crazy hours, choking on their own “production”). Perhaps we have to discuss that many autistic people tend to be sequestered and over-prompted from the time they are children and learn to comply with ABA therapy. Compliance may extend to the workplace where an employer may expect a certain way of working and attention and the autistic individual may not, by virtue of challenged social interaction skills, know how to negotiate. Perhaps this is one area teachers can look towards – self-empowerment and esteem building opportunities for children as we do for the typical population.

We must discuss supported decision-making and other aides and guardians to attend to the needs and desires of people with autism. If we are not willing to finance these supports and allow aide workers in the workplace or at schools, colleges and universities, we are further disabling environments for people with autism. We have to continue working for equity. While we must keep moving forward, we have to ensure safe-guards are in place and that autistic people are not all expected to be I.T. workers. What oher kinds of work might individuals in our community want? What is “contribution to society?” There are many ways, shapes and forms of contribution that must be considered, valued and supported.

The Different and Equal Premise and the Law

Filed Under (autism, Law) by Estee on 09-01-2013

I’ve started my next semester of my Master’s studies, now taking law and cultural studies at the same time, hoping to engage the law through an arts-based approach. Sitting in class yesterday discussing various issues around pain and physiotherapy, the issue of Occupational Therapy also entered the discussion. It started as a discussion regarding a study conducted by a person with CP about a person with CP who took a superior position over her subject and seemed to take a neo-liberal stance – the subject was not doing their exercises to mitigate/manage their pain and the implication of blame took the perspective of an obligation to become a citizen by managing oneself (arguably to become more normalized). The hidden bias was that we must look after our health for the purposes of becoming productive citizens of the state, and we are less valuable if we do not do so. There are elegant counter-arguments, namely Sunny Taylor’s The Right Not to Work, which I would encourage you to read if you have the time.

I will continue to write on something I picked up from Carol Tavris and included in my essay The Mismeasure of Autism – that autistic citizens are different and equal. Marcia Rioux also utilizes this notion in speaking of the law for people with disabilities:

“If equality depends on sameness or on being similarly situated, then the fact of difference warrants unequal treatment. A concept of equality that requires that likes be treated alike and unlikes be treated differently presumes the impartial enforcement of legal and social rights. It makes no difference to attempt to clarify what makes people equal in particular circumstances or for particular purposes. There is no prescriptive element to the principle on which governments might base their decisions about which people are to be accorded unequal treatment. The principle simply establishes the generally accepted rule of law that procedural fairness must be applied for law to be legitimate. Neutrality in the application of the law and the absence of different treatment are presumed to result in equality. For example, people who cannot fill out forms are deined the right to vote, while others, who can read and write, are afforded that right. The law is equally applied to all those who cannot provide the information; therefore the fact that it has a differential impact on those with intellectual disabilities is insignificant. So are extraneous causes for such lack of ability; neither the systemic, legal exclusion of those with intellectual disabilties from the regular education system nor the means of eliciting the information, which is in a mode of communication less accessible to them than to others, are taken into account in determining justified and unjustified distinctions.” (Rioux, 1994).

Rioux contends that the law assumes here that justice is safeguarded on this premise of sameness as it is appropriated to the notion of equality. We still tend to utilize the arguments that all humans are the “same,” even with their disabilities, despite the complexities and different needs among, for the purposes of this blog, autistic individuals. Which leads me to quickly elaborate on my point made in my previous posts that autism is a social construction. It is if we consider that the diagnositc criteria is created by teams of people and the notions and conceptions evolve with changes in society and over time. Arguments can be made for and against these constructions. Yet, the communities that have been created as a result of the construction have been helpful for many people. It can often help to relate to others. This collectivism, however, does not assume that all autistic people share the exact same experiences or share the same feelings about their lives, or about autism itself. What we can value is the many and varied experiences that people may share with us. This can avoide a possible damaging reification and over-generalization about autism, indviduals, experience and needs. It does not consider the complex cultural, socio-economic, gender-based and other intersections that also effect individual experience.

Let me go back to the beginning of my thoughts about the CP (Cerebral Palsy) article. It was the idea of various therapies that struck me and an autistic person’s right to deny treatment, and to deny being touched. I think back to when Adam was much younger – when some therapists thought to rough and tumble him would normalize him, or that touching him for therapeutic reasons was simply okay. Occupational therapists do this all the time. I never thought twice about it. I always thought that OT was helpful for Adam, and I do think it was helpful for his motor-planning and sensory needs. It was the manner and the respect of therapists towards Adam’s dignity that I continue to seek out for him. Over time, I came to ask these questions: Is he being respected? Do people attempt to teach him on the premise of “being less than competent” than a so-called “normal”population? Do those who engage with him respect him in all ways or feel he must always be taught to be normal? Do we play on his terms as well as asking him to play on ours? Is the relationship reciprocal? Complicating matters regarding the autistic child is the matter of how we treat and regard children in general. Yet we all know that the fully verbal child has the ability to say no (even if not listened to) and the autistic child may say no in their behaviour, or that there may be ways of judging “no” if we are patient and willing to pick up the many subtle communications outside of typical langauge systems.

The focus of my work continues along the different and equal premise in all forms and continues to explore emanciaptory research and participation of non-verbal autistic individuals, often deemed the least valuable and able in our society, therefore leading to continued normalization treatments, exclusion, and sadly, abuse.

“Setting the equality standard as an outcome measure removes the need for each disadvantaged group to demonstrate discrimination. It replaces the capacity to compete as the basis for political obligation. It takes into account the social reality of the disabled and non-disabled as well as their biological differences. And it thus makes the achievement of social justice dependent on a recognition of those differences that must be accommodated to achieve equality of well-being.” (Rioux, 1994).

Now with The Autism Genome Project seeking ways to isolate and identify the autistic person in vitro, and considering the date of Rioux’s article (1994), I wonder how much longer it will take for the different and equal premise to take hold in law so that autistic people can be considered valued Canadian citizens.

References:

Gaskin, C., Anderson, M., Morric, T (2012) Physical Activity in the Life of a Woman with Cerebral Palsy: Physiotherapy, Social Exclusion, Competence and Intimacy. Disability & Society 27:2 (March), 205-218.

Rioux, Marcia H. (1994) Towards a Concept of Equality of Well-Being: Overcoming the Social and Legal Construction of Inequality, 7:1 Canadian J.L. & Jur. 127.

Happy New Year

Filed Under (Joy) by Estee on 07-01-2013

I wrote earlier that I just returned from Oaxaca, Mexico. Adam wasn’t with me this year. His dad and I take him on holiday every-other year… the “schedule” as I’ve come to think of it.

I got a new ukelele for Festivus from my musical beau (we literally play music together). When I picked up Adam from school today, we were reunited since he went with his father in late December. I was so excited to see him, my stomach in knots. I couldn’t contain myself, smothering his soft face with kisses that he tolerated for a while. As we drove home, a huge smile came over his face. We returned home, made dinner, played downstairs – back to the regular routine. I pulled out my new uke and played a new tune I’m learning and Adam danced for me. I can’t wait for bedtime – a book, a snuggle, a “hunker down beneath the covers,” and more smothering kisses goodnight. They don’t call it (s)Mother for nothing.

I hope this makes you smile. Happy New Year to you all!

Back from Oaxaca

Filed Under (Activism) by Estee on 07-01-2013

I was in Oaxaca, Mexico the past couple of weeks. I apologize for not getting to the blog to publish some of the comments that came up while I was away. I didn’t have great internet access. I managed to rest, read a lot (Susan Sontag, Derrida, Barthes…and ended my journal with Oliver Sack’s own Oaxaca Journal.). Before I left for vacation, I did a bit of writing on Sacks, and am working on the essay for publication.

The last day in Oaxaca, we wondered the markets and mingled with locals. I would have loved to have stayed longer as I wanted to engage with one man in particular begging for money with a severe disability. I wanted to talk and engage, not just hand out money and walk away. I knew our langauge differences would have been challenging. We looked at each other I stopped and said “Ola,” and he did so in return. I would have lingered but my Spanish is terrible. Then, the Saturday crowd, market smells and heat carried us away.

When I woke up in Toronto this morning I thought of how our autism “charities” need to engage in ethical discussions about how we relate to people with disabilities; how we need to do it in real time and in our discussions on websites. Autism charities are not experts in autism (I’m talking more of the ones lead by non autistic people. We don’t have a solid theory about what autism is, per se. I contend that it is a social construction and while we have an obligation to assist many people in a variety of ways). We should not espouse answers for autistic people without them. We have a collective responsibility to engage and to discuss the ethical implications of the Autism Genome Project, about Inclusion, rights, social justice, “treatment” and education. Autism and disability charities can engage with greater ethical discussions with the disability organizations that engage in these issues. We need autism organizations to interact with them.

I wake to snow in my own city, and to more work.

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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.