The Culture of Abuse?

Filed Under (Abuse, Discrimination) by Estee on 28-09-2012

This video from CNN, sadly, is just part of the abundance of abuse that autistic people face every day. While we watch the acts disclosed to us here, it is important to note this perverse normalcy of our culture of abuse and ask ourselves the question, to what extent are attitudes about autism contributing to systemic “sickness.” In other words, to what extent has neo-liberal society, the one that values independence under a capitalist system, promoted maltreatment and abuse? To that end, in what ways has “normal” society become sick? A few more reflections after you watch this:


In my critical disability studies, I discuss these issues alongside disabled people who have also experienced abuse. I also sit in classrooms where people who work within the systems, including Applied Behavioural Therapy (ABA) have listened to the accounts of inside operations. I’m so glad members of the ABA community, btw, are looking at autism education from a critical disability studies perspective.

By way of these first-person accounts, and by case studies such as Paul Cambridge’s The First Hit: a case study of the psychical abuse of people with learning disabilities and challenging behaviours (1999), it is clearly evident that caregiver service providers do not have a proper system for the protection of whistle-blowers; that the caregiving industry is vastly undertrained and underpaid. The service delivery system requires a major audit. Here a quote from a service provider:

“I was told to do the first hit and then it would be OK…X never expressed any feelings of liking for the people and had complete control over them. [this meaning the intimidation practice of the more seniored staff to the newer staff]. You weren’t allowed to show openly that you cared.” (Cambridge, 1999)….

“Newly-appointed staff were placed in difficult situations, where the risk of failure was high. They also often lacked the necessary competence or experience to perform essential care tasks well. Their abilities were then challenged and they were emotionally underminded by the principal alleged abuser, a practice that was sustained by other staff in the core group who had moved from the old institution.” (Cambridge, 1999).

In Toronto, we’ve heard of lots of abuse situations in residential living facilities. The scope of one blog post/reflection cannot encompass all the issues that are endemic/sick in our society that has laid the foundations for the way in which we employ, provide serivce and regard employment for clients with disabilities. If we do not value people with disabilities, we will not value the people who work within the service system which is an essential accommodation for the participation of many severely disabled people in our society. It is important to say here that I’m not at all excusing the individual acts of the abusers by stating it’s just a systemic problem!

We still sequester the severely disabled. We don’t want to see them. They provoke anxiety within us, and we rather turn away. Or, we’ll throw charitable money at “the problem” to temporarily make ourselves feel better. This is one side of the coin. What we need is a service system we can trust, and that values the disabled (among many other points I could make here).

The way we value (or don’t value) all members of our society is the linchpin of the future (bright or dismal) for pretty much all of us, not just the severely disabled. Consider that ability-disability is a continuum and that most of us will become disabled in our lifetime in one way or another (even ageing is in many ways a disabling condition), how are we supporting or even not supporting ourselves? Do we only think in terms of the individual — each one for himself? Or are are bodies not only part of this continnum but also permeable bodies, that is bodies that effect each other; responsible for and to each other?

Today, I broke down in tears, which happens often when I meet prejudice face-to-face. Adam’s regular doctor was not around to see him today. Adam was complaining that his ear hurt. Yet, he is terrified (and sensory defensive) of his ears being checked. Some doctors have more empathy and are better at getting Adam to agree to have his ears checked. Adam doesn’t love this doctor — his memory is vivid and we’ve seen this one before, and he seems a little more nervous around him than I’ve seen him around others. It’s important to note that he’s not a “bad man,” or anything of the sort that is so simplistic. This is to highlight the subtle nature of the prejudice and attitudes that paint “all” people with autism as one in the same. When I was there, I also wanted to discuss puberty and adolescence as I would if I had any other son. I received this response:

“Do you have any autsitic doctors?”

“I’ve seen everybody. I sort of know of everyone here in the field,” I responded a little disturbed, wondering where he was heading with the term “autistic doctors,” as if they proliferate the field as answers to everything autistic.

“Well, what we know about autistics when they go into adolescence is that they become violent and agressive. Like today. We had to hold Adam down today [to get his ears checked]. I can’t do that again. He could hurt me.”

I walked out, Adam in hand. When I got to the car, tears streamed. First, the doctor doesn’t even know Adam save for the petite bundle of nerves when Adam sees him. All he saw was Adam’s fear and resistance. Adam has never hurt anyone. Adam is kind-hearted, loving and happy, save for his anxiety and all that he must deal with in a world where normal is the top of the hierarchy. Adam will go through puberty like everyone else. I can’t predict what will happen, except that I know who he is. I know how I was and that I was as moody as shit. Somehow, I even seem to know in my heart that everything, up and down as it will go, will be okay.

I cried for the parents who don’t have the time to enter a disability studies program, or have the time to study philosophy or read about things or get in touch with other disabled people and their complex stories, although there are more access people and resources than there ever were, so I’m grateful for that. Autistic people are available, their books are also on the shelves, their blogs accessible to all of us. Some of them will empower, many of them caution. I thought, if I didn’t have my armour, what would I have made of that comment from a “medical expert” who actually knows less about autism than I do? I say that with confidence even though I stop at the point when I am fully aware I am not autistic and cannot appropriate the experience of being autistic in a highly prejudiced world.

To what end do bias and ignorance (lack of understanding and knowledged about people with autism that is dangerously over-generalized and misunderstood) espoused by some members of the medical community (and it is also important to note that not all of the medical community would say something so stupid), create a culture of abuse? After all, Mr. Doc gave me fair warning and can’t check Adam’s ears again…don’t get me started on how the disabled don’t get proper health care…

Reference (and I encourage you to find this one):

Cambridge, Paul (1999) The First Hit: a case study of the physical abuse of people with learning disabilities and challenging behaviours in a residential service, Disability & Society, 14:3 285-308.

A Mother’s Notes From The Ghetto

Filed Under (Ableism, Abuse, Acceptance, Activism, Advocacy, Book Reviews, Critical Disability Studies, Disability History, Discrimination, Inclusion, Media, Parenting, Politics) by Estee on 13-08-2012

Like many of you, I watched the closing of the Olympic ceremonies. Today’s notes from the ghetto weave some thoughts about the Olympics, a book, a documentary, and the Canadian Charter of Rights and Freedoms.

In a waiting room this past week, Sports Illustrated lay limp and wrinkled on the table in front of me. An title about how the games were more inclusive this year caught my eye and I read it with disappointment. There was no mention of people with mental disabilities. I didn’t take the copy of the article because it wasn’t mine, and now I can’t find it to cite. You’ll just have to take my word for it unless you can find it for me.

I wanted to write a post remarking again how people with cognitive disabilities weren’t visible or participating in the games. As much as I watch the Olympics, I can’t help but see it as a symbol of our admiration of the able-bodied. Including some disabled people in the opening ceremonies and a Para-Olympian is supposed to change that view. The “main” Olympics gets the bulk of the media attention. In talking about the Olympics, then, the media coverage is a reflection of what the consumer wants to see. I’m not blaming the athletes for being able-bodied and I congratulate everyone for their remarkable achievements. I am, however, spotlighting the acceptance of exclusion.

Today I also finished Melanie Panitch’s Disability, Mothers and Organization : Accidental Activists and read about the three mothers who worked tediously to get their children out of insitutions in Canada and close them all down: Jo Dicky, Audrey Cole and Paulette Berthiaume. I read how these women lived in a time of not only gender inequality — “busy men” on boards versus women knocking door-to-door as volunteers — but also in a trail of institutions born from the eugenics movement. The first institution in Canada was the Huronia Regional Centre in Orillia, pictured above, which opened in 1876.

Ironically, as I finished reading the final chapter this morning, I tuned into the CBC documentary The Gristle in The Stew and listened to the stories of horrific abuse of the people who were labeled mentally “retarded” by professionals. These professionals told parents to just “forget about [their] children and move on.” The government film “One On Every Street” told parents that 1 in 33 children had mental retardation and described insitutions as happy places where children would be educated and rehabilitated in the name of getting them back into their communities. Not so for Paulette’s son and others like him. Her son Louis lived in an institution for thirty years before she could get him out.

Audrey, Paulette and Jo were made to feel guilty for not only having disabled children, but were also pressured to put their children into institutions and be “good mothers” for doing so. Many families lived in fear of not placing their children in institutions because they did not have access to other services so they turned a blind eye to the abuse. There was no “unity” in their struggle, for these fearful parents criticized activists against the campaign to close institutions in Canada.

While these three mothers fought (and won) to get all people out of insitutions in the name of their children, they were excluded and marginalized as “emotional” and “trouble-makers” along the way, often excluded from participating on major boards and committees. But they did not desist. These three women managed to close all institutions down in Canada, and worked arduously for over twenty years to do so. They worked in 1981 to include the disabled who were then omitted from Section 15, which dealt with equality, and secured human rights for the disabled in The Canadian Charter of Rights and Freedoms. They won an unprecedented $1,400,000 in personal dmages for 88 former residents of Saint-Theophile in Quebec in 1990 (pardon the omission of accents that I can’t access on this blog), among many of their accomplishments. They did so as volunteers. One reviewer, Susan DeLaurier says of the book, “Disability is often viewed as a narrow field of social policy, programs and services that leads to a set of parallel social arrangements that have isolated disabled people in segregated systems. By looking at the mothers of children with disabilities and their insights and researching their activism, it is hoped that disability will be viewed as a broad-based inquiry commanding social and political analysis.”

A class action law suit of $3 billion for the plaintiffs incarcerated and abused in Institutions in Canada, simply for having a mental disability, will happen in September 2013. Listening to Patricia Seth and Maria Slark, two of the plaintiffs in the documentary, made me shudder. As a mother, I already know of gender discrimination — domestic and public as a mother of an autistic child and an activist — and there are challenges with this in helping Adam. To imagine how the “accidental activists” had to wait for so long to see their children free again, reminds me why I feel anxious so often. I feel I am always looking over my shoulder and can never rest where Adam is concerned. We have to respond when advocates for any “treatment” or “therapy” which uses the same language and logic that incarcerated innocent people just a short time ago. In the ABA movement which started in Canada in the early 1990’s many of the campaign phrases and threads of logic echo like the halls of institutions. The ABA movement was founded on the premise that autistic children would recover by age six with the treatment (and now the argument extends to older ages) and would therefore no longer require “state” funding. At the time, the estimated costs of funding an individual in an institution was $85,000 a year. In 2012, I relate to the same feelings as these mothers and share their experiences even after feminism has evolved. The challenges and the way to help Adam become increasingly complex, there is resistence and fear of progress, old arguments persist and the “busy men” still exist.

Our situation remains fragile. Despite statutes, we have not achieved Inclusion for people with autism. Society does not see autistic or other mentally handicapped persons as truly valuable to our communities where definitions of “capacity” and “productivity” seem exclusive and informed by implacable economic theory. We see it at the most basic level as in extraordinary red tape in our education system and, after all, I’m “just a mother.” Despite detailed notes and expertise about our children, the public system will hardly pay attention to it. They prefer a report from a professional using standardized tests which is an exclusive and unjust method of testing an autistic person. I talked about some of this in another post about the many ways we experience exclusion. “The briefing notes by the Community Association for Community Living in 1993 noted the same: “despite the protection afforded to people with disabilities in the Charter of Rights and Freedoms, many barriers to participation still exist in employment, immigration, education and the criminal justice system.” (Panitch, p. 145).

There is another group who tell us to “never forget,” and this same standard must be advocated for the disabled who have experienced formidable abuse in their lifetimes. When Pierre Berton reported about the abuses at the Huronia Regional Centre in Orillia (pictured above) in The Toronto Star, Berton noted that after Hitler fell, “many Germans excused themselves because they said they did not know what went on behind those walls. No one had told them. Well, you have been told about Orillia.” Now I, along with others, am telling you about echoes; of the history that could repeat itself.

The Olympics is just one more timely, everyday example of using people as footnotes and keeping them in the ghetto. It is time to include all the Olympic events — special, para and everything else, under one umbrella. I work for the day when I can witness Adam attaining his full citizenship rights. Audrey Cole wrote a Manifesto with her two lawyers called A Manifesto of the Canadian Association for the Mentally Retarded in 1982:

“The Manifesto equated how the renewed constitution established the full autonomy of Canada within the community of nations with how the provisions of the Charter of Rights and Freedoms introduced a new history for people with disabilities as valued, participating members of the community. It concluded cautiously: ‘The Charter of Rights and Freedoms obviously has very important implications for Canadians who live with a mental handicap. It is not possible to determine fully what those implications might be until the provisions of the Charter are considered by the courts in the contest [sic] of real life situations.” (Panitch, p. 133).

Audrey Cole said in her interviews with author Melanie Panitch:

“Our struggle is long-standing. It will not only continue but will gain strength with every denial of a fundamental right to any person of any age with or without disabilities in this country…Outrage, as you know, can be a unifying force for the achievement of social justice.” (ibid, p. 69).

We’re living the relay race and our work is not yet done.

Reference:

Melanie Panitch, Disability, Mothers and Organization: Accidental Activists. New York, Routledge, 2008.

The Insidious Implications of The Judge Rotenberg Center

Filed Under (Abuse, autism, school) by Estee on 13-06-2012

When I watch parents defend the Judge Rotenberg Center, I think of children who can go on “loving” their abusive parents. Parents should be the base of not just survival, but of love. When we entrust schools to care for our children, it is disturbing to see how long Matthew Israel and others have defended the use of painful shock treatment because it’s “effective.” Sure it is. Abusers can get children to submit to anything with the infliction of pain. It’s just wrong.

Yet my version of black and white becomes perplexingly gray in the name of what’s effective for “these kids” — these “autistic/emotional challenged kids.” It leads me to wonder where the line is drawn. While The Judge Rotenberg Center is the extreme of how to “normalize” behaviour or allegedly stop self-injury, the implications of how we view autism, the meaning and communication of behaviours, and how we value autistic people become more insidious with what we see there.

As a more common example or possibility, what of the autistic child who may come out of any school who can’t speak, but may have mysterious marks on their body? There are no cameras in other autism schools that I’m aware of. Shouldn’t we, as parents and community, have the right to see what’s going on when our children can’t tell us for themselves?

I think all of us parents and teachers who love to teach, need to advocate for full transparency. We need cameras in classrooms, perhaps even webcams. Schools can protect themselves from teachers who may not be able to handle a situation well. If we believe in the value of autistic people, even with the challenges, transparency should not be an issue at all. We grow and become better with it.

For any therapist or teacher who may wonder why we autism parents fret every single day, it is because of not only stories like these at the Judge Rotenberg Center, but because our children cannot tell us how they are being treated. If we think of a typical child, they come home and tell their parents who is nice, who they don’t like, and who may be bullying them. It is their intrinsic right to express themselves. For children who have more difficulty doing so, it is their right to be protected.

I, for one, will advocate for cameras in the classroom and the stop of abuse of autistic children. I will continue to write about stopping the abuse at the Judge Rotenberg Center.

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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.