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.
ESTÉE KLAR
Autistic people do and have become violent. Also, their violence is much less predictable than with normal people so it is more dangerous for professionals who need to interact with them since they do not know what will set the individual off. Sure, autistic people should not be abused. But doctors and nurses and teachers should not be regularly exposed to potentially fatal or crippling violence because as a society we are too politically correct to deal with the violence presented by an autistic population that is more and more made up of teen and adult males with great potential towards causing severe physical damage to others. You might know your child is gentle, but the doctor doesn’t and it is not some horrible thing if they take precautions to prevent themselves from being hurt or killed by someone who is out of control
If you read the paper, you will see that the lack of training issue in dealing with autistic individuals who do express aggressive behaviour are not trained to be their caregivers. It points to a systemic problem and a need for serious audits within the service system.
It is interesting in your comment however, what you leave out. That is, you leave out also the issue to what extent we as a soceity perpetuate abuse and the institutionalization of disabled individuals.
On a personal note, the doctor knows that Adam does not act violently. Never. Ever. His was an assumption and a statement that was based in ignorance and possibly, sensational assumptions and generalities. Also, you do not address that society has a need to target the vulnerable population. Finally, there is a tone to your argument that is unsettling, which leads me to think about the Judge Rotenberg Centre and their justification that autistic people must receive electric shock treatment in order to reduce their aggressive/violent behaviours. If you haven’t looked to it, I suggest you do Our history also points to contiuned abuse of disabled individuals under the auspices that they must be violent. Your argument so far has a lot of problems in it that you have not addressed.
I wish I had more time to respond to this today, but I don’t. I will continue to address your comment and how it is disturbing to me on many levels. Let’s begin by “autistic people do and and have become violent.” That in itself is a general statement that targets an entire community that is labeled autistic. It would be the same thing as saying, “black men do and have become violent.” That is a gross generalization and would be discused on so many levels, and mainly a statement of prejudice and a source of discrimination. So thank you, you illustrated my point exactly better than I could write on my own today.
In terms of autistic people and their “behaviour” I think readers should look at the Rosenhan Experiment: Being Sane in Insane Places. http://boeatau.wordpress.com/2012/06/06/being-sane-in-insane-places-the-rosenhan-experiment/. It also illustrates how, when appropriate labels and behaviours, we can do so on virtually anyone. Be careful what you state so grossly, so generally.
Posting a comment like that anonymously speaks volumes in itself. Not much to add to what @E said, I’m just glad there’s someone more eloquent than me that can respond.
I was frequently in the hospital or having tests when I was a kid, and noticed an important element or two of the problem that I don’t think you mentioned.
From what I saw, doctors/nurses misinterpreted my body language as conveying willful rebellion when I didn’t let them do things to me, instead of realizing I was going into a fight-or-flight state where I didn’t really control my body. In response, they worsened my involuntary struggling by using force or “if you don’t __ then we’ll have to __” threats.
In comparison, I noticed that NT roommates would do little things when afraid that I’d noticed classmates do towards bullies to show submissiveness, and get the kind of accommodation *I* needed (taking it slowly, gently, given extra time to relax, analgesics, etc). They weren’t saying any more than I did, and weren’t just signaling fear (I’d seen *that* enough), either.
The nurses/doctors that showed no need to dominate still misinterpreted my fear as rebellion. The surgeon that could accurately read my nonverbal communication recognized the fear but somehow spoke/moved in a way that calmed me enough to cooperate even when I knew (or he told me) it would hurt.
All put together, I think that a mix of misreading autistic body language and common adult intolerance of “defiant” kids are a big part of the problem we run into from an early age… Prejudice is also a huge part of it, as you saw today, but I think more than a little of the prejudiced information is/was created & perpetuated by doctors/nurses causing the behavior they expect.
I’m a little thrown by one thing you said, though:
“neo-liberal society…values independence under a capitalist system”
As an American, the second half of that description seems more to me to better fit neo-conservativism or libertarianism. The abuses caused by authority figures (teachers, doctors, etc.) and social acceptance or encouragement of it seems much more in line with neo-cons authoritarian nature, and in a different way, with the libertarian belief in vulnerable people being left to fend for themselves & take what they can get rather than being protected in any sense by society or the law.
I have seen commentary elsewhere that the neo-liberals in some ways are less friendly towards disabled folk than their conservative counterparts… However, that seemed to me more a matter of neocons often being against aborting/euthanizing disabled people due to religious beliefs and neolibs often applauding such things for our own good. If we take the religious aspect out, from what I’ve seen, neocons join libertarians in cheering for whatever costs the government or society the least (not that it’s a step up, given the result is being aborted/dead regardless).
The response to your article seems extremely defensive. Autistics, disabled or normal adolescents becomes violent because they are strongly aware that we do not understand them or wish to understand them.
Good points raised, thank you and keep ‘em coming. When I refer to neo-lib, I’m suggesting our society which values individualism as an issue that confronts people with disabilities.
Ok, so acknowledging that autism can lead to violence that is difficult to predict is just like advocating for the JRC? Oh right I disagree with your portrayal of autistics so obviously I advocate torture.
I worked briefly in a school for autistic children as an aide in college. The job description was clear in stating employees may be subject to violence and I was. Poor frustrated autistic angels kicked, threw desks, spat, bit, etc. at me. For a parent or someone very familiar with the child, maybe those could be considered predicable but most people don’t expect a violent tantrum for something as minor as touching a child’s paper.
I was warned and accepted those risks, but people in professions like medicine and law enforcement who see plenty of other conditions like mental illness or drug abuse, predictability is that much harder and saying that it is wrong to take precautions is unreasonable. Just like autistics should be safe from torture and violence, so should the people who work with them.
Estee, I apologize because I was unable to read the whole post. My stomach feels unwell and I feel shakey after watching the video from CNN. However I was able to read the comments. I may be re-iterating what has been said by you and by others but I would like to say that most violent acts are perpetuated by men. However, society does not – and should not – condone violence towards men in anticipation of violence from them. It is so wrong to assume that anyone will be violent by being violent. I believe that if disabled people were involved more in our communities, more of us would have fewer false expectations of disabled people. You speak to this in your next post about community. I would also like to assert that even when disabled people are violent, it is often not an inherent part of their impairments. It is often because there has been pressure all of their lives to be fast or slower or more quiet or smarter or more polite or more of something. Our disabling society has driven many people with impairments to violence. Please know that I do not condone anyone’s violent behaviour but we need to stand back – as Estee has in this post – and ask ourselves why people are violent. Thank you for your post and your blog, Estee.
Anon, I am having difficulty with your sweeping assumptions. First, “autistic angels,” — you perpetrate a dichotomy that is socially constructed and very problematic. “Autism leading to violence?” Again, where is your evidence that this is specific to the autism community. Autism, the label and diagnosis, is a social construct. It does not negate impairments and challenges and it does neither release or accuse typical individuals for creating abuse. Abuse is a fact and it is a fact that it happens TO many of the vulnerable populations. Your comments warrant an essay in and of itself, and I would refute your grand statements that certainly cause abuse of autistic and other individuals in similar situations. For anyone interested in how the intellectually disabled are treated in facilities, and how people who work with the vulnerable can fall into the patterns of abuse, you can google Chris Chapman, “Becoming A Perpetrator: How I Came to Accept Restraining and Confining Disabled Aboriginal Children.” He went in with all the “right” intentions and found himself restraining children.
I would say that your comment does, yes, lead to a general acceptance, and would be supporting of using electric shock therapy at JRC. Your argument falls in line with theirs.
I’d reply, but what’s the point. You are intent on characterizing me as someone who supports crape like the JRC, merely because I have the gall to suggest professionals should protect themselves from violence. Yes, the low frustration tolerance and communication difficulties associated with autism predispose some to violence. This is why autism schools warn employees of that risk before they take the job. It is something I also personally experienced and no, I did not abuse anyone unless you consider evading being hit as abuse. Though I’m certain you’ll still lump me in with the abusers as acknowledging the realities of autism is considered the same as torturing someone.
Is that what I said? Can you quote me on that? Look, I don’t know you. I don’t know your situation. I am pointing out, IMO, very d ifficult aspects of your argument. The point of this is to take a look, critically, at our thinking. I think we spectulate on the issues about aggression in general. There are serious problems with either/or, first/then logic that you use specifically here which I already pointed out above. I do think the issues are much more complex. Finally, connected but also to extend the argument, I’d like to suggest that generalizing this to be solely a problem to “autistics” which is a label socially constructed and that we can easily trace back in time (which I won’t do necessarily in a comment box) is very dangerous. Many people, no matter what their social label, can have many reasons (reasonable or not) to be aggressive. Finally, I know little about the centre where you worked. What was the policy there? How were professionals trained? What was the overall attitude? How do we define autism — is the set of behaviors that are interpreted (and therefore often problematic) a fair way to diagnose people? To that end I cited the Rosenhan experiment. The Chapman article on becoming a perpetrator is really interesting because it reveals the practices of many residential facitilies. There are many more points that can be discussed. Go ahead and critique away. I am questioning your line of thought.