In response to people who tell me that I’m too angry at the ways in which autistic and otherwise disabled people are treated, all I can say is: I’m not angry. I’m not having a personal feeling that I need to resolve. No. I’m outraged. I’m having an ethical response to a society that needs to right its wrongs. I’ve been outraged all my life at injustice and needless suffering, and I always will be. I consider it an ethical obligation of the highest order.
© 2011 by Rachel Cohen-Rottenberg
Over the past few weeks, I’ve been very busy with my job and with getting acclimated to the routine of my graduate program. I’ve formed a great connection with the little guy I care for, and in my graduate program, I’m generating lots of ideas and questions as I go along.
For one of my classes, I recently read an excellent article called Orchestrating Voices: Autism, Identity, and the Power of Discourse by Nancy Bagatell, an assistant professor of Occupational Science at Quinnipiac University. The paper is the result of the author’s nine-month process of interviewing and observing Ben, a 21-year-old college student with autism, as he engages in the iterative task of constructing his identity in the face of social stigma and the demands of normalcy. Because it illuminated some of my own struggles and gave me insight into some of the issues that we face as disabled people, I thought I’d share my observations.
In Bagatell’s study, Ben’s struggle for identity goes through three phases:
1. Pretending to be normal
2. Finding the autistic community
3. Navigating competing worlds
Sound familiar, anyone?
Pretending to be normal
Summary: As a child, Ben knows he is different, has little interest in the things his peers are interested in, and is “teased mercilessly.” He initially resists attempts by his parents and teachers to “fit in” and “act normal.” As Ben gets older and wants friends and a girlfriend, he attempts to act in the ways that his parents and teachers suggest, but he has difficulty navigating social situations. The more “normal” he tries to act, the more he feels that something is “wrong” with him, and the more isolated and depressed he becomes. (416)
When Ben goes to college, his anxiety and depression worsen. He sees a psychiatrist who prescribes medication and sends him to a social skills group and psychotherapy in order to help him “fit in.” He begins self-medicating with marijuana, alcohol, and prescription drugs in order to try to navigate social situations. In this phase of his life, Ben relentlessly attempts to control his behavior by pretending to be normal and longs for a cure for his autism. (417)
Ultimately, he finds that pretending to be normal is enormously stressful. He experiences increased anxiety and panic attacks, and he engages in self-injurious behavior. This phase finds its climax when he climbs to the top of a building, intending to commit suicide. The result is a three-day stay in a psychiatric hospital. (417-418)
My thoughts: One of the things that struck me about Ben’s story is the Catch-22 in which he finds himself: the more he tries to “act normal,” the more “wrong” he feels. That is, attempting to attain an ideal of normalcy only results in a pervasive sense of failure.
As a child, I avoided that sense of being all wrong — partly because I was a good student, and partly because I was an athlete. On both counts, success built upon success, and my self-esteem was pretty solid. The trouble started in adolescence, when social situations became more complex, and it was clear that I was not engaging them as other people were. Each year of high school, I chose a different friend to emulate, just so that I could feel that I was getting it “right.” But, like Ben, the whole time, I felt a deep and pervasive sense that something was wrong with me, and that sense only deepened as I got older.
I am very fortunate in that I didn’t end up suicidal. Oddly enough, the abuse I had experienced at home created in me a powerful desire to live. I was determined that I was not going to let the abuse destroy me.
But suicidal ideation is not uncommon for autistic people, and the beginning of Ben’s story is something of a parable about the very significant dangers of the medical model of disability. In emphasizing impairment, it rejects that idea that a disabled person is whole, and thus supports the notion that one must be typically able-bodied in order to be a complete human being with a full and meaningful life. The medical model is a self-perpetuating one: if it is taken as axiomatic that one must be “normal” to have a good life, then most of society’s resources and energy go to attempting to get disabled people cured, assimilated, or out of sight. Very few resources and very little energy go into making the society more respectful and inclusive of diversity, when doing so is the only way to actually enable disabled people to have full and meaningful lives. Ben’s attempted suicide speaks to his instinctive perception that the medical model holds no promise for him. It simply leaves him feeling that he is wrong and cannot be made right, no matter how hard he tries. Under these conditions, he feels that his life is not worth living.
Bagatell notes that Ben’s attempt to construct an identity have led him to consider suicide because he knows that he cannot be “normal” in a society that privileges the normative, and so ends up in a state of self-hatred: “Within the discourse of ‘normalcy’ Ben was a failure… Like many others with disabilities, Ben became ‘tangled up in various forms of self oppression’ (Swain and Cameron, 1999, p. 75). Ben’s attempts at self-punishment climaxed on that April day as he literally teetered on the edge.” (418)
Finding the autistic community
Summary: After he leaves the hospital, Ben attends an autism conference and learns that his behaviors and perceptions are neurologically based, rather than a question of moral will or deviance. He begins to see them as “a normal part of my experience.” Ben meets other people with Asperger’s who have stopped pretending to be normal. He rejects the need for a cure, seeing Asperger’s as integral to who he is as a person, not something that can be “separated out.” He begins to accept and assert himself as he is and to reject attempts to render him “normal.” In so doing, he makes a very good distinction between acting normal and being normal:
“There really is basically no way to teach yourself to be more normal. You can teach yourself to appear normal but you can never really be more normal. And trying to do it is just stressful. I think that’s everybody’s experience.” (419)
Ben sees himself as part of the autistic community, where he can be who he is without attempting to conform to conventional social expectations. He enters and becomes engaged in the shared experience of a world in which he is not marginalized. He listens to the voices of other autistic people who reject the need for conformity in a quest to live an authentic life. He chooses to “come out” as a person with autism and to adopt it as a “valid, positive social identity.” (419-422)
My thoughts: Ben’s experience almost precisely mirrors how I felt when I found the online autistic community. Suddenly, there were other people like me. And for the first time, I felt “normal” in a group of people. It was very empowering and very comforting.
The problem, as I soon found, was how to navigate between the larger world and the autistic community. As grateful as I am to have found this community, and as empowered as I feel by all that I’ve learned, the dissonance between my own emerging truths and the social attitudes toward disability that I’ve encountered in others have been very painful to me. It was one thing to attempt to navigate the world with an interesting neurology I didn’t have a name for; it’s quite another to have become conscious of the issues in play and find that the world is still seriously behind the game in understanding them. This is part of the quandary in which Ben ultimately finds himself.
Navigating competing worlds
Summary: After a time, Ben experiences the tension between the “authoritative voices” of the neurotypical world (in which he is perpetually reminded of the importance of fitting in and, thus, of his perpetual position on the margins) and the alternative voices of the autistic community, which welcome him and let him know that he is fine as he is. He realizes that he cannot just choose between these voices in constructing his identity, but needs to figure out how to perceive himself in both worlds.
Bagatell suggests that we form multiple identities in which to navigate multiple social and cultural worlds, and that the trick for Ben is to figure out how to have a positive identity in each one. (422-423)
For Ben, by the end of the study, the process is not going well. He experiences more agitation, anxiety, depression, and sensory overload. He tends to see both the autistic and neurotypical worlds in negative terms. He does not see autism as a positive, nor does he see many possibilities for love and marriage, even within the autistic community. On the other hand, he is more and more upset that the medical community doesn’t seem to understand autism and that his psychiatrist is constantly “experimenting” with his medications. (423) Ultimately, he seems to see that his problem is social, not medical, asserting that he doesn’t need social skills classes, but true inclusion in society: “’I am sick of social skills groups … . Why can’t someone go to the bar with me or to chess club? That’s what I need.’” (425)
My thoughts: The reality of constructing multiple identities really rings true for me. Earlier in my life, I experienced this process in forming a Jewish identity within the Jewish community, and then attempting to figure out how to navigate the larger society without losing my sense of my own culture. Within Jewish culture, I could use certain words and have my meaning be understood, because we all shared the same basic paradigm; in the larger culture, those same words could be taken to mean something quite different, and I had to choose carefully how to present myself and my ideas. (For example, the word “salvation” means something quite different in Judaism than it does in Christianity. In Judaism, it refers to being saved from suffering and injustice in this life, while in Christianity, it has to do with being saved from hell after death.)
Forming multiple identities is the challenge for people of all minorities who must live within the larger culture. How does one live within different worlds — especially when one world takes a pejorative view of the other? It’s a very complex process. For disabled people, it’s particularly fraught, because the larger society defines us in terms of what we lack, and we tend to form identity in the face of it. Along these lines, Bagatell quotes Swain and Cameron (1999):
“From the viewpoint of disabled people, then, their personal and social identities have traditionally been formed within a framework from which they have been excluded. In defining the parameters that state emphatically what disabled people are not (i.e. ‘normal’), the dominant cultural discourses determine that disabled people’s self-reference is measured against this. (p. 75, emphasis in original)” (418)
The question is, how do we disabled people define ourselves in a context that embraces the deficit model and sees us mainly for who we are not? It seems to me that we always have a choice to make: Do we take in those voices of impairment, lack, deficit, and disease, and see ourselves as people who are “less than”? Or do we define ourselves as whole, as human, as essentially fine, just as we are? And in making this choice, how do we root out the deficit model from our thinking about disability so that we can see ourselves as different, not wrong?
I’d love to hear your thoughts.
—
Sources
Bagatell, Nancy. “Orchestrating Voices: Autism, Identity, and the Power of Discourse.” Disability and Society 22, no. 4 (June 2007): 413-426. doi: 10.1080/09687590701337967.
© 2011 by Rachel Cohen-Rottenberg
I’m honored to be featured today in an interview on Robert Hickman’s Achieving Extraordinary Success.
I’d love it if you’d come by and add your comments to the conversation!
Some years ago, I took a two-year training course in Jewish shamanic healing. I came away understanding a great deal about the many ways in which ancient Jewish culture was similar to many other indigenous cultures, especially regarding the role of the healer, and the importance of ritual in maintaining the health of the individual and the society.
Ever since that training, I’ve become very interested in how various indigenous cultures view illness and healing, mainly as a way to understand our own culture’s attitudes toward sickness and health. So when I ran across the following in Robert Murphy’s The Body Silent, I began to think about the ways in which it illuminates the autism discourse:
“Among the Mundurucu, and many other South American Indian societies, the most serious threats to health are believed to arise from violations of the social order, specifically from the activities of malevolent and alienated individuals, people who, say the Mundurucu, ‘are angry at everybody.’ Most diseases, the Mundurucu believe, are caused by evil shamans who manufacture supernaturally charged objects, called caushi, that enter a person’s body and cause illness…
Just like the invisible malignant objects he manufactures, the Mundurucu sorcerer is thought to operate covertly, maintaining his everyday demeanor and mask of sociability while spreading disease and suffering. Killing the accused restores the body politic, and at the same time purges the populace’s fears, envies, and secret hostilities, which have been projected onto his person. The good shaman brings back life and normal function to the body and community; the evil shaman creates death and disorder — which are really the same thing.” (Murphy, 30-32)
One of the images that struck me right away was that of an outside force entering the body and rendering the individual ill. In the mainstream discourse, autism is sometimes imagined to be the result of a foreign substance being introduced into the body by way of vaccines, environmental toxins, or food additives. At other times, as in the infamous Ransom Notes campaign, autism becomes the outside invader itself.
In both cases, the seemingly inevitable corollary is that autism is a condition separate from the person. If the autism were removed, the narrative goes, the formerly autistic person would be well, normal, and whole. Thus, despite the vast diversity of the autism spectrum, despite the dozens of possible genetic markers for autism, and despite the fact that autism is a complex neurological condition, most people speak of autism as though it were a single entity that could be safely excised.
But where our own culture diverges from the indigenous view is the degree to which the “cure” is focused wholly on changing the person, rather than the social context in which the person lives and breathes. In cure circles, there is very little talk about changing the disorder in society in order to heal the individual.
The only exception comes in the form of the vaccines-cause-autism contingent, whose members believe that keeping people from introducing vaccines into their children will stop the “autism epidemic.” Just as the Mundurucu view the sorcerer as a malevolent entity who operates “covertly, maintaining his everyday demeanor and mask of sociability while spreading disease and suffering,” many who believe that vaccines cause autism view the pharmaceutical companies, the vaccine manufacturers, and the federal government as co-conspirators in a plot to render the American public ill, all the while going about their business looking as respectable as can be.
Of course, the anti-vaccine contingent does not help anyone become better. In fact, they only introduce more illness into communities by lowering herd immunity through their anti-vaccination efforts. In trying to heal disorder, they only create more of it.
As for the rest? Those who believe that autism is caused by environmental agents, rather than by genetics, show little to no interest in stopping the alleged cause of the autism. If you believe that pesticides cause autism, shouldn’t you be working against the use of pesticides? If you believe that food additives cause autism, shouldn’t you be working against the use of food additives? And some people are. But far more people devote all of their attention to altering or curing the autistic person, despite the fact the autistic person, in this scenario, is simply the canary in the coal mine. It’s as though, instead of working on better conditions to keep miners from dying of the methane poisoning that killed the canary, everyone involved decided to re-engineer the human body to tolerate high levels of methane. In that kind of scenario, the human body becomes the source of the disorder, and no one need alter the larger environment.
I read a comment recently on another blog that spoke very directly to this idea. In writing of the necessity for a cure for autism, the commenter said:
“The world isn’t going to get any less bright, less loud, less crowded, or less dependent on the need to communicate in our children’s lifetimes no matter how much we may wish it; and no matter how wrong it is, funding for a generation of children needing lifetime assistance will not be forthcoming.”
I found this comment quite interesting, because it clarifies so succinctly the impact of social disorder on autistic people while eschewing the necessity for healing the disorder in the body politic. The society we live in is not only very bright, very loud, very crowded, and very biased toward verbal communication; it is also a society in which humane, compassionate, lifetime care for severely autistic people is nonexistent. The commenter’s solution is to find a cure. He has wholly given up on the idea of changing the world around him, and he puts the necessity for change squarely on the autistic individual.
I think it’s apparent to most of us who have reached mid-life that the world has become quite a bit more disordered than it was when we were children. I remember my father limiting our TV watching; these days, you can hardly go into a restaurant or a waiting room without a television on. I remember a world of books and LPs; these days, there are iPods, computers, and all manner of technology that keeps us bombarded by visual and auditory stimulation. I remember when you weren’t supposed to play your music too loudly, so as not to inconvenience other people; these days, I hear music blaring out of people’s homes and cars on a regular basis. I remember when you could actually read the credits after a movie because they went by slowly enough for the average human to parse; these days, the text on the screen flies by so quickly that you have to click the pause button just to read it. I remember when classrooms were orderly and quiet; these days, in far too many places, they are loud and chaotic.
All of these factors mean that those of us who flew under the radar 50 years ago could certainly never do so now. It’s not our autism that has changed. It’s the environment. And yet, very few people talk about the environment in any thorough-going way. Yes, there are special ed classrooms, and some autism-friendly movie events, but there is a huge difference between providing separate venues for autistic people and addressing the disorder in the larger society that renders us disabled. Clearly, not all the disabling features of autism can be solved by re-ordering the environment. As one autism mom said to me recently, no accommodations can keep the world from being one in which bees buzz, babies cry, and dogs run — all of which are very painful to her autistic son. But there is much in the environment that can be changed so as to render the world less aversive and disabling to autistic people.
Few people want to talk about that kind of change because, frankly, most people have the privilege of accepting society just as it is; and those who see the enormity of the problem feel powerless to change it. So, instead of the social order changing, it’s individuals who must change. From what I have experienced, putting this burden on the individual is a core feature of the mental health profession, which largely sees difficulties like depression and anxiety as personal problems rather than social ones. Very few therapists are willing to engage the question of the ways in which skyrocketing levels of depression and anxiety have to do with the cold, lonely, stressful, alienating nature of American society. Instead, the solution is almost always to talk it out and take a pill.
After many years in recovery as an abuse survivor, and now as a late-diagnosed autistic, I’ve come to realize that American culture thrives on this individual illness paradigm. Everything is a disorder in the individual. If you’re depressed because you’re disabled and feeling isolated, you have a mood disorder. I actually had my last therapist tell me so. I said to him something along the lines of, “Wait a minute. I’m dealing with a disability in mid-life, in a world that is set up to exclude me more often than not. How does that translate to a mood disorder? Aren’t I having a perfectly normal response to the gravity of the situation?” He just kept telling me that it was my problem.
In the final analysis, it’s the person diagnosed as “disordered” who ends up in the position of the Mundurucu sorcerer and becomes seen as the source of social disorder. Disabled children are considered a “drain” on the school system. Disabled adults are considered “a burden” on society. Autistic people are called unempathetic, rigid, black-and-white thinkers in a society in which most political discourse is inhuman, inflexible, and polarized. People with mental illness are objects of fear and derision. The list goes on and on, the prevailing mythology being that if all these people could simply be cured — or just plain disappear — normality would reign, fear would be banished, and all would be well in the body politic.
In the popular imagination, we disabled people end up not in the position of the victim of an evil sorcerer, but in the position of the evil sorcerer himself. In the minds of so many, to cure a disabled person — or to render the disabled person invisible — “restores the body politic, and at the same time purges the populace’s fears, envies, and secret hostilities, which have been projected onto his person.” The larger society becomes the good shaman, “who brings back life and normal function to the body and community.” The individuals labelled “ill” become the evil shaman, who “creates death and disorder.”
And yet, unsurprisingly, no one is healed. We simply end up creating a society of alienated individuals who, as the Mundurucu say, “are angry at everybody.”
© 2011 by Rachel Cohen-Rottenberg
“The worlds created by the human imagination are far more coherent and structured than the real social systems in which we live, and the mental constructs by which we make sense of society are only loosely related (sometimes inversely) to what is really going on. We take these conventional views of our social system as matter-of-fact, true representations of social reality, but they are socially constructed realities, human artifices whose purpose is to perpetuate society, not clarify it.”
— Robert Murphy, The Body Silent, page 30
I’ve been having a discussion lately with an email correspondent who was mentored by Robert Murphy, and who is himself disabled. He asked me about my feelings concerning the neurodiversity movement, and his questions gave me a chance to further understand the complicated nature of grief and disability. Some of my thoughts in this piece come directly from my portion of our emails, and others reflect the places that my thinking has gone in the midst of our ongoing discussion.
I want to be clear that I agree with many of the core tenets of the neurodiversity movement, which I consider to be no different than the core tenets of the disability rights movement, or any other human rights movement — that all people deserve respect and safety, that all people have the right to be front-and-center in conversations that affect them, that personhood should not be defined by an arbitrary standard of normal, and that there are many ways of being, learning, thinking, and perceiving. However, I no longer identify myself with the movement, in part because I saw how easily I was beginning to slip into polarizing positions that I now consider untenable — such as the absolute insistence that autism is so essential to the person that, by curing the autism, you want to get rid of the person.
I can understand that position; it very aptly describes how I feel about myself and the way in which autism is woven into the fabric of who I am. I personally don’t wish to be cured; were you to take away the autism, I would be someone else, and I do not wish to be someone else. What I wish for most fervently is to feel welcomed as an equal, just as I am. However, these feelings derive from my personal experience. There are a lot of different manifestations of autism; some people do not feel especially happy with being autistic, and some autistic people would like to be cured. Would I prefer that all autistic people be happy just as they are? Sure, but I don’t have to live in their bodies. I just have to live in mine.
And then, of course, most able-bodied parents who hear an autism diagnosis begin grasping at straws about how to proceed, because nothing in life has prepared them for going down the road ahead of them. When you combine the fear, uncertainty, doubt, and dread generated about disability in general with the fact that few able-bodied people understand the experience of disability at all, is it any surprise that most parents grasp at the “cure” straw at one time or another?
When you’ve got a parent in this position, responding with “cure the autism, destroy the person” is extremely counterproductive. It only ends up sounding like an indictment. Parents feel pushed up against the wall and criticized, so they stop listening at the very moment that they most need to hear from us.
Of course, there are people seeking a cure who take extreme positions, and who believe that autism is the worst scourge to hit mankind since the Black Death. And there are people who lose themselves in their anger that life didn’t work out according to plan. There is really no talking to people when they’re in that state of mind.
But a lot of people are on the fence about the cure issue, and they’d be open to a conversation if they felt that we respected where they are in their lives.
What’s most lacking in the conversation about a cure, from the neurodiversity perspective, is the acknowledgment that parents of autistic kids go through a grief process. I have to admit that I feel a lot of discomfort when I hear parents talking about grieving their children’s autism; sometimes, I just want to yell, “Are you grieving me? Because I don’t need your grief. I need your respect.” But, whatever my feelings on the matter, it’s essential that the grief process be recognized and respected if we’re to have any kind of constructive conversation at all.
From what I’ve observed, the grief comes from three different sources.
The loss of the idealized normal child
This grief is largely about the parents. I’m not saying that as a judgment at all; in fact, I understand it completely, and I’ve experienced my own version of it when looking at my idealized self. The way that parents hold on to the imagined normal child derives directly from the fact that, in American society, being normal is the most important value. The socially constructed idea of normal exercises a tremendous hold on the imagination. Aspiring to be normal is more important than aspiring to be a great teacher, or a brilliant researcher, or a bringer of peace to a war-torn country. In fact, it is considered to be the prerequisite to doing just about anything else. And that is because anyone who is even minimally aware knows what normal looks like, understands that he or she is supposed to aspire to it and, at one time or another, believes that normal and natural are exactly the same thing.
Of course, they aren’t. Normal is a social construct, first and foremost. In every society, it’s a different creature. In 21st-century America, normal looks something like this:
Walking is normal.
Speaking is normal.
Seeing is normal.
Hearing is normal.
Having white skin is normal.
Being a Christian is normal.
Being heterosexual is normal.
Socializing in large groups is normal.
Having an Anglo-Saxon surname is normal.
Celebrating Christmas is normal.
Speaking English is normal.
Having European ancestors is normal.
Being middle class is normal.
Being educated is normal.
Having children is normal.
Being happy is normal.
Believing in God is normal.
Of course, this list is far from exhaustive; after all, being normal is a very complex business. But if you look carefully at even this very partial list, what becomes clear is that being normal is not normative. Anyone with a characteristic not on that list falls outside the bounds of normal, to a greater or lesser degree. Having several characteristics not on that list pushes one further toward the margins. If you put together all of us who do not fulfill all the criteria, you get the majority of people on this planet.
But the illusion by which we live is that most people are normal. This illusion is a prime example of Murphy’s assertion that “the mental constructs by which we make sense of society are only loosely related (sometimes inversely) to what is really going on.” When it comes to the myth of normal, those words are especially apt.
And part of what’s “really going on” is that parents of autistic children find themselves dragged, often kicking and screaming, out of the land of normal — a terrain that they had formerly taken entirely for granted. This phenomenon leads to the second source of grief.
Leaving behind one’s own normality
Having an autistic child means that an able-bodied parent can no longer lay claim to being normal. I don’t care if that autistic child grows up to win the Nobel Prize, marry the President’s daughter, and buy a retirement home in the Swiss Alps; the minute a parent gets that autism diagnosis, normal is over. All done. Kaput. Never to return.
You know those angels with the flaming swords, guarding the path to the garden of Eden? They’re the same ones standing between able-bodied autism parents and their formerly normal selves.
You hang out with marginalized people and, sooner or later, you get marginalized. Anyone who has ever been in a public school knows this to be the case. Parents, remember the kids you didn’t want to hang out with, the ones you avoided like the plague, the ones you secretly (or not so secretly) made fun of, the ones by whom you didn’t want to be tainted by association?
Now your kid is one of them — which makes you one of them.
This inconvenient truth is what leads people to scream their heads off about how it must be the vaccines that cause autism, or the environmental toxins, or anything other than genetics because — gah! — if autism is genetic, that must mean that you’re one of us.
I’ll let you in on a little secret: You are one of us. Bwahahaha! Welcome to our world.
Sometimes, I wonder whether parents exclude autistic people from the conversation about autism in an attempt to maintain the illusion of their own normality. Perhaps, in their heart of hearts, they want to believe that their autistic children will never grow up to be us — as wonderful as we are — so that the parents can somehow disassociate themselves from us and return to the grieved-for land of normal. I’m not sure, but it certainly seems that there is a disdain for autistic adults in the autism community that borders on the irrational. I’m not sure exactly where it all comes from, but I think that a desire to avoid being tainted for life by us is certainly part of it.
The fact is that, like it or not, autism parents have entered the condition of most people who live on this earth. Few of us are normal. In fact, the people who fit the criteria of normal are a very distinct minority, indeed. But for this minority, all kinds of accommodations, privileges, and services are available — a point that leads me to the third source of grief.
Feeling frightened about the autistic child’s future
My feeling is that grief is a natural part of the process of having a disabled child and, contrary to somewhat popular opinion, it’s not always about wanting a different child. It’s often about just being scared shitless on behalf of the one you have. You watch your kid getting bullied, you see the pain the child experiences from being made to feel apart, and you worry about whether your adult child will find a partner, have even a small circle of supportive friends, and be happy. And these fears are not unfounded. A great deal of the time, the unhappiness that we face is not caused by the autism itself, but by the bigotry and cruelty of other people.
As a parent, I see nothing wrong with grieving that your child is going to face prejudice and attempts at exclusion for his or her entire life. You’d have to be living in a fantasy world to think that a disabled person is going to avoid all that in society as presently constituted, and the question of the child’s happiness under those circumstances is crucial.
What any parent of any child wants is that doors open for the child, not close. And most people understand that being normal means that you have access to the best jobs, the best educational opportunities, and the widest range of social opportunities. Normal people get to apply to college and, if they get in, they just pay their money and show up. They don’t have to fill out several pages’ worth of information about the accommodations they need and hope like hell that those accommodations are deemed “reasonable” (by non-disabled people, no less!), so that they can go to the college they’ve worked so hard to get into.
No, normal people already have those accommodations provided for them, without even asking. It’s a wondrous thing.
And what happens when you don’t have those accommodations provided as a matter of course? An easy life, it isn’t. It’s natural to grieve that. Of course, the main thing is not to get stuck in the grief and turn your kid (and yourself) into a victim.
So what do we do?
Do we focus on a cure, do we focus on making autistic people “indistinguishable from peers,” or do we work to build a world in which all the people who fall outside the realm of normal have equal access and equal rights? If we set out to do more than one of these tasks, how do we apportion our time and attention?
I consider it vital that we not make autistic people hold all the responsibility for change. Certainly, there is nothing wrong with trying to help an autistic child communicate effectively and navigate the world, but doing so cannot be a substitute for fighting to change social and cultural attitudes about normality. And the reason is simple: We will never be normal, and idle dreams about elusive cures are a distraction from the work that needs doing.
I passed for normal, to a greater or lesser extent, for most of my life. I still can, in certain contexts. Does that mean that my problems are solved? No. Does it mean that I can walk through the world, assuming that I will be respected and included? No. My difference becomes apparent eventually and, given the wrong circumstances, immediately. Being married, having a child, earning a graduate degree, writing books, and owning a house — none of it changes the fact that the quality of my life is deeply affected by the attitudes I encounter regarding my difference, by the degree to which people accommodate it, and by the ways in which people exclude me on the basis of it. No amount of passing, and no amount of achievement, will ever change that.
Autism parents, do you not want to know this?
I have always known that I am different. Others have always known that I am different. At some very blessed and happy times in my life, other people have seen my difference as a very good thing. And at some very low and very unhappy times in my life, other people have found my difference something to be derided, shamed, even beaten out of me.
Over the course of my life, I’ve acquired skills and learned to adapt, but at my core, I’ve never really changed. I’ve always been autistic. My context changed — sometimes for the better, sometimes not — and those changes had a tremendous influence on whether I succeeded at work, in relationships, and with friends. They made the difference between being abled and being disabled. And the impact upon my self-esteem and self-respect was directly proportional to how much support and respect I received.
So, if you aim for apparent normality as a way to resolve your fears about your autistic child’s life, please be aware that you will not fully solve the problem. Yes, helping your child to navigate the world is crucial, but it can’t be the end of the story. Your child will always be different. Your child will always know that he or she is different — as will others. Your child will never blend completely. Accepting a socially constructed reality called normal, as though it is available to your child means, to borrow Murphy’s words, being complicit in one of the “human artifices whose purpose is to perpetuate society, not clarify it.”
Perpetuating the status quo will not help anyone who has left the land of normal. Clarifying the status quo and fighting to change it means creating a world in which many millions of people — including your child — will finally take their place in the full light of human dignity.
© 2011 by Rachel Cohen-Rottenberg
I’ve recently begun reading Robert Murphy’s The Body Silent, one of the great books on the social and cultural context of disability. Murphy, a professor of anthropology at Columbia, became a quadriplegic in his fifties as the result of a benign tumor on his spinal cord. He wrote The Body Silent from the perspective of an anthropologist observing himself as a disabled person in the context of late 20th-century America.
His writing immediately spoke to me, in part because I’ve lived my life from the perspective of an anthropologist in a foreign culture, and in part because I recognize so many of my own experiences in his words. I am not very far into the book, but what I’ve read so far has sent my thinking in all kinds of new directions. I am being careful not to read too much at a time without articulating my thoughts on it; the book is so rich that I could lose track of all its implications if I didn’t pause to reflect.
Among the many passages that I’ve found powerful is the following, which describes the social role of a person who becomes ill:
“A person’s ordinary social roles — mother, father, lawyer, baker, student, and so forth — all become temporarily suspended when he or she falls ill. The individual becomes a ‘sick person,’ which relieves him or her of some or all of the ordinary obligations, depending on the severity of the illness.
The suspension of his other duties does not mean that the person playing the sick role has none at all. Quite the contrary; he is saddled with one big obligation: He must make every effort to get well again. In our own doctor-ridden culture, this means that he must seek medical advice; he must take his medicine and follow the doctor’s orders. This expectation mandates the proper role of the sick as one of passivity. The sick person is excused from work or school, household duties are suspended or at least limited, and connubial relations may be put on ice. But in return, he must devote full time to getting better.” (Murphy, 19)
The temporary suspension of numerous social roles in favor of a single imperative to “get well” is a trap that is well-known to many of us. Sometimes, this suspension of other obligations is necessary and welcome. For instance, when I had surgery to remove a degenerative disk in my neck a few years ago, I spent several weeks recovering my strength before I was able to get back to “normal.” And I well remember the feeling that my only role was to heal. At the time, I felt great comfort in knowing that others would take care of business while I recovered.
But the situation becomes much more complicated and troubling when a person moves beyond a short-term illness into a chronic condition. A couple of years ago, I went through a particularly low period with being autistic. During my 50 years of ignorance about my condition, I had pushed myself unmercifully — physically, psychologically, and emotionally — to the point of burnout. At the same time, I had been prescribed benzodiazepines, medication that was wreaking complete havoc with my sensory and emotional life. For awhile, I needed assistance with basic tasks, such as food shopping, housecleaning, and cooking. It was painfully difficult to ask for this help, and my self-esteem suffered significantly.
Two years later, I take much better care of myself. I have adapted to my disability, I have gotten off the benzodiazepines, and I have healed from the burnout. As a result, I no longer need such assistance. But the legacy of having once required it has cast a pall over my life that I have never completely dispelled.
Until now, I’d never known why. I’m beginning to understand, though.
With a condition such as autism, Down Syndrome, or multiple sclerosis, there is no “getting well” in the conventional sense. There can be therapies, accommodations, and the amelioration of certain symptoms, but there is no pill, no surgery, and no treatment that will remove the condition and render the person “normal.” Having any of these conditions, therefore, automatically puts one into the category of “sick” people (think “autism epidemic”), with a concomitant obligation to “get well.” But if you have a condition from which you can not “get well” according to the standards of the larger culture, you are completely unable to fulfill the one social imperative that the world gives you. And if you fail at that one obligation, then the quality of all the other social roles that you might have — father, mother, husband, wife, friend — immediately becomes suspect.
Thus, you end up with the widely held belief that the partners of disabled people are heroic for sticking around, and that they do so only out of pity, as though disabled people are not full and equal participants in the process of their own lives. And you get a great deal of talk about the numerous (and very real) challenges that the parents of disabled children face, to the exclusion of talk about the numerous (and very real) delights that such parents find in their disabled children.
You get T-shirts, mugs, and tote bags that say, “I love someone with autism.” You don’t get T-shirts, mugs, and tote bags that say, “Someone with autism loves me.” I’ve considered making up some items with that message on them, but I think it would only depress me to find out how few I would sell.
Of course, defining us as “sick” generates a great deal of money, energy, and emotion in the race for a “cure.” After all, if our one imperative is to “get well,” the culture is going to make damned sure that we do it. And, inevitably, the only way to get other people to join the search for a cure is to generate FUDD (fear, uncertainty, doubt, and dread) about living with a disability. In the autism world, Autism Speaks is masterful at this form of gamesmanship, which has the net effect of making the parents of autistic children absolutely terrified of what might happen to their children without all the latest treatments, without 40-60 hours per week of expensive therapy, and without that elusive “cure.”
The fact that there are millions of disabled adults who have created happy and fulfilling lives, without full-time treatment and without a cure, seems to matter not at all. We are ignored, and why? We have broken the obligation of being a “sick” person. We have not remained passive. We have not lived our lives in a quest to “get well.” We have lived our lives in a quest to live well as the people we are.
As a result, we find ourselves in the vortex of a great deal of distortion for wanting to simply be at peace with ourselves and carve out a meaningful life. It’s as though, having given up our “patient” status, we’ve committed some sort of cardinal sin. Thus, you get autistic self-advocates, who do not want to be cured, being told that we’re faux autistics. If we reject the role of the “sick” person, with the one overriding obligation to get better, it’s as though we short-circuit the cultural wiring. The response is often along the lines of, “If you refuse to see your autistic mind and body as sick, and you refuse to accept the social role that having such a mind and body entails, then you must not be autistic at all.”
That logic, of course, is not logic at all, which is an indication of how deeply threatening stepping out of our assigned role feels to other people. And the illogic means that we face psychological warfare of the worst kind: we find ourselves verbally stripped of the very condition that is the source of our struggles, our triumphs, our sensitivity, our discipline, and our awareness. In those moments, it’s as though our entire life histories have been erased.
Were we not threatening a deeply held cultural value, the response to us might be somewhat more productive, along the lines of, “I give you a lot of credit for your strength and your accomplishments, and I celebrate that you have a happy and fulfilling life. But please be aware that my adult autistic son, who tries to self-injure all day long, who bloodies himself on a daily basis, who gives himself concussions when he’s stressed, is in a state of irremediable pain that no accommodation can fix. Do you understand why I want to move heaven and earth to find a cure? And, until that help arrives, can you give me some insight as to how I might understand what is happening to him?”
That would be a conversation worth having. Unfortunately, I’ve never seen it actually happen.
In the absence of that conversation, I understand the wholesale rejection of words like “disease,” “disorder,” and “sickness” in the autistic community. I’ve gone to great lengths to distance myself from words like those, and I’ve always felt a great deal of discomfort about it, too. After all, what is so shameful about having a disease, or a disorder, or a sickness? Isn’t rejecting those words just playing into the hands of those who see disability as the worst possible thing that could happen? Don’t we need to reclaim those words and empty them of all of their dehumanizing connotations?
I think we do. But it’s difficult to do so when being labelled diseased or disordered puts you into the trap of having only one social role, and it’s a role you can’t fulfill. Under those circumstances, it’s entirely understandable that the response would be to reject the label altogether.
As I sit here thinking about all of these issues, I’m reminded of someone I never met, but about whom I know a great deal: my husband’s late wife, Karolka, who died of ALS ten years ago, at the age of 55. One of the most memorable things that Bob has ever told me about her has to do with the whole issue of disease and cure.
Even before the diagnosis of ALS was confirmed, Bob and Karolka sought out all kinds medical interventions to try and heal her — or to at least slow down the progression of the condition. And on a regular basis, they would hear from a friend or community member with another great idea for them to try. At a certain point, Karolka decided that it was time to stop chasing a cure, and to start accepting and living her life. Even after she’d made that decision, people would periodically show up with new ideas, but she had moved on, and when she did, she found a great deal of joy.
She never referred to ALS as “my disease.” She always referred to it as “my condition.” And lest you think that she was engaging in feel-good, New Age, mamby-pamby, politically correct nonsense, please allow me to disabuse you of that notion. She had absolutely no time for bullshit of any kind, and the last thing on her mind was a desire to fulfill someone else’s idea of how to talk about her life. But in speaking about ALS as a condition, rather than as a disease, she gave herself a great gift: She made herself an active participant in her process of living and dying, rather than a passive victim of an enemy beyond her control. And she released herself from the obligation of having to “get well,” when getting well was out of the question.
I’m not saying that every disabled person has to see himself or herself the same way. And I’m certainly not saying that it’s not okay to want a cure for one’s condition — although there are a great many troubling consequences to having a cure in a culture in which our main social obligation would be to avail ourselves of it.
What I’m arguing against is the whole idea of the obligation altogether. Far too many people will never have typical neurologies, typical bodies, typical minds, or typical ways of being. Giving disabled people an obligation we can’t fulfill means that we become people of less than equal worth. And it also means that we have very little support to fulfill a number of other roles — such as mother, father, husband, wife, son, daughter, friend, neighbor, and community member — that we want and need, just as everyone else does. The overriding quest for a cure means that an organization like Autism Speaks spends most of its budget on research, and only 4% on services for autistic people living in the here and now. What is this “autism advocacy” organization advocating for, anyway? It is advocating for us to assume one role, and one role only — that of a patient, passively waiting to get better. It is not advocating for us to fulfill our birthright — to participate fully in all that the world offers to typically able-bodied people.
A few years back, after I received my Asperger’s diagnosis, I told a friend of mine who lives in Jerusalem, and who himself lives with a chronic disability. His response was something along the lines of “My sister, I will pray to Our Creator to heal you.” I was rather aghast at his response, as loving and as well-intentioned as it was, but I couldn’t quite articulate why. I wrote something back to the effect of “Please don’t pray for my healing, but for my ability to manage my life with strength and dignity.”
I never head from him on the subject again. But if I had it to do over, I’d expand on my request for his prayers and say, “Please, don’t pray for my healing. Please pray for my strength. Please pray for my dignity. Please pray that I have supportive friends and a loving community. Please pray that I continue to find meaningful work. Please pray that the world stops seeing me as broken. Please pray that others don’t react to me with fear and prejudice. Please pray that I live a long and happy life.”
Perhaps I’ll still ask for those prayers.
© 2011 by Rachel Cohen-Rottenberg
On an April 26 NewsHour segment, Robert MacNeil fielded several viewer-submitted questions regarding his Autism Now series. Among other things, Mr. MacNeil was asked why he had not made visible the lives of autistic adults all along the autism spectrum, and why he had not invited autistic people to share our experiences and our concerns.
His answers were, in a word, disgraceful.
In the entire six-part series, Mr. MacNeil talked with only one autistic person. He asked Zach Hamrick, a young man with autism, about his job. Here is the exchange, in its entirety:
Robert MacNeil: Almost finished?
Zach Hamrick: Yes.
Robert MacNeil: Do you like the job?
Zach Hamrick: Yes.
Robert MacNeil: Do you find it easy, or is it hard?
Zach Hamrick: Yes.
Needless to say, asking an autistic person basic questions that require one-word answers, for a total of ten seconds, on a program that extends over six nights, does not even begin to address the nature of our lives. And so, I was very interested in seeing how Mr. MacNeil would handle questions about having excluded us from the program.
The interchange on the NewsHour segment took place between Mr. MacNeil and correspondent Hari Sreenivasan, with Mr. Sreenivasan forwarding the questions, and Mr. MacNeil supplying the answers. Two particular sets of questions caught my attention.
First, Mr. Sreenivasan asks, “[H]ow did you choose the stories that you did? And what else do you wish you could have done?”
Mr. MacNeil replies, “We didn’t talk about adults living now with autism, which is a very interesting story, and what their lives are, how they work, where they live, what kind of support they need.”
He considers our lives “a very interesting story” — an outsider’s perspective, par excellence. It’s as though we are a fascinating anthropological research project, rather than people, with basic human needs, in the here and now.
He continues, “We did concentrate on those about to become adults. And if anybody is interested in this and wants to read the transcript of the interview with Peter Gerhardt of the McCarton School in New York who is an expert on this, it’s really fascinating on what he envisions the lives of adults can be and should be.”
Yes, let’s talk to a non-autistic person who is an “expert” on what our lives can and should be, rather than to autistic people — who not only know how our lives can and should be, but who also know how they actually are. Why Mr. MacNeil feels the constant need to sidestep us in this way, to talk to other people about us, and to direct people to speak with those who “envision” our lives, rather than to those of us who actually live them, is beyond my capacity to fully understand. For a journalist whose only aim should be to uncover the truth, continually ignoring the primary source of that truth violates all journalistic standards, as well as basic common sense.
Rest assured, though, that things only go downhill from here. In forwarding another concern from a viewer, Mr. Sreenivasan says: “There’s a comment from John Horton, who writes in and says: ‘I think an adult with autism should have been included on the roundtable. They’re talking about them but not to them.’”
Mr. MacNeil’s response is so appalling, so illogical, and so dismissive that it will take me awhile to untangle all its implications.
He begins by saying, “Well, perhaps he’s right.”
Perhaps? It’s as though the question of interviewing the subjects of his series had never occurred to him before.
And he continues, “We tried to concentrate on what we thought were urgent issues, urgent problems. And a lot of adults with autism, particularly those who describe themselves as a kind of neurodiversity community, are high-functioning people with autism, who have busy and productive lives in the world, who serve a wonderful purpose of helping the community at large to understand and witness autism and be tolerant of it.
But they speak for themselves. And we didn’t see them as an urgent issue, as urgent as the impending arrival into adulthood of hundreds of thousands of teenagers with autism.”
Oh, God in heaven, where to begin?
Let’s begin by discussing the urgencies that attend the lives of autistic adults, shall we? Unemployment rates for autistic adults are skyrocketing, and services for developmentally adults are being ruthlessly cut. In a 2009 study in the UK, the National Autistic Society found that “79 percent of adults with autism who receive government assistance would like to work. But limited resources and lack of understanding mean that few have jobs and many have trouble even getting government assistance, leaving them ‘consigned to poverty’.” The picture in the US is equally bleak.
Moreover, autistic adults are especially vulnerable to becoming victims of crime. According to the Department of Justice, people with developmental disabilities, including autism, have a four to ten times higher risk of becoming crime victims and are twice as likely to be sexually abused as people without those disabilities.
Is it any wonder that the rates of clinical depression, anxiety disorders, and suicide of autistic people are higher than those of the general population?
Is all that urgent enough for you, Mr. MacNeil?
As for the idea that autistic adults who have “busy and productive lives in the world” should be excluded from a discussion about autism because “they can speak for themselves” — well, it’s absurd on the face of it. Why should being able to attain independence — which, by the way, is what every autism parent wishes for his or her child — disqualify us from speaking about our insights, our experiences, our concerns, and our views in order to improve the public’s understanding of the lives of autistic people? After all, Mr. MacNeil gave non-autistic people with “busy and productive lives in the world” more than their fair share of airtime on his program. Their level of functioning did not enter into his decision about whether to include them. Why should it affect his decision about whether to include us?
And why, oh why, should our ability to speak for ourselves be a reason not to allow us to speak at all? How does that improve the lives of autistic children in the here and now? How does it improve their prospects for the future? If they attain some measure of fulfillment and independence in adulthood, will they, too, be excluded from the conversation?
The logic of Mr. MacNeil’s statements works along familiar and divisive lines: If you can speak for yourself, you are not autistic enough to speak for other autistics. But if you cannot speak for yourself in any kind of conventional way, we will not allow other autistic people to speak about you, to express concern for you, to enter into the discussion about how to support you, or to share their reflections about what your experience of life might be like. We will only allow non-autistic people those privileges.
If “high-functioning” autistic people are considered ill-equipped to understand the experience of others on the spectrum, then on what logical or ethical basis can Mr. MacNeil, who is not autistic at all, justify speaking for any of us? If Mr. MacNeil has the right to speak about autistic people, then surely, we do, too.
Of course, I categorically reject the idea that only “high-functioning” adults can speak for themselves. There are many people, all along the spectrum, who can speak for themselves in a myriad of ways. Consider Carly Fleishmann, a nonverbal teenager diagnosed with classic autism and apraxia, who has learned to type over the past two years, and now attends honors classes in a mainstream high school. She is a funny, insightful, passionate young woman who travels the country helping people understand the nature of autism.
Or learn about Eric Duquette. When he was a child, his parents were told that he would end up in an institution. Last year, he was the salutatorian of his high school class, after having been accepted into every college to which he applied.
Or listen to the words of Jeremy Sicile-Kira, a severely autistic young man who graduated from high school last year and gave a speech, using a voice synthesizer, at his graduation ceremony. He, too, is going to college.
So, Mr. MacNeil, if you think that those of us who can speak are too “high-functioning” to talk about the lives of people diagnosed with classic autism, please go ahead and talk with them yourself.
You will find us describing the experience of autism in much the same terms. And you would do well to listen. After all, anyone who wants to create an “authoritative” series on autism needs to portray the lives of people all along the deep, wide, and diverse autism spectrum.
We will continue to expect nothing less.
© 2011 by Rachel Cohen-Rottenberg
The March 31 issue of the New York Times includes a short review of the film Wretches and Jabberers, a documentary that details the work of two autistic men as they travel the world to change hearts and minds regarding autism, disability, and intelligence.
On wretchesandjabberers.org, a website devoted to the film, the men’s mission is summed up in this way:
“Determined to put a new face on autism, Tracy Thresher, 42, and Larry Bissonnette, 52, travel to Sri Lanka, Japan and Finland. At each stop, they dissect public attitudes about autism and issue a hopeful challenge to reconsider competency and the future.”
To read the review in the New York Times, however, you’d never know anything about what drives these two men to do their work. In fact, you’d never know much about the two men at all. The entire review skips over the thoughts and perspectives of autistic people altogether. In fact, ironically enough, it is filled with the distorted perspectives on disability that Thresher and Bissonnette have set out to correct.
Whenever I read a piece about autistic people in the mainstream media, I start out prepared to cringe. I knew I was getting into trouble when I read the opening paragraph of the review, which is especially cringe-worthy:
Those who work with or are related to people with disabilities can get considerable encouragement from “Wretches and Jabberers,” a documentary about two autistic men who learned only in adulthood how to use a keyboard to convey their thoughts and needs.
I’m really glad that our coworkers and families can feel encouraged by the film, but how about us? After all, people with disabilities watch films, too. In fact, considering that the film is about people with disabilities, one might argue that we would have a particular interest in the subject matter. But we are absent from the audience of both the film and the review.
Oh, but wait. Hope springs eternal. Note the beginning of the next paragraph:
But the film also has a message for a different group:
Could it be us? Have we arrived? Alas, not a chance:
the technical wizards who develop communication devices. Gerardine Wurzburg, the director, is not shy about showing that even though her subjects now have a way to communicate, it is a painstaking process; perhaps this film will encourage engineers and software developers to keep the innovations coming.
I was a bit disappointed that we weren’t included in this “different group” (because, after all, we are different), but I began to think that there might be some empathy here for the difficulties involved in being autistic and needing to communicate in “painstaking” ways. After all, I’m all for technological innovations that make the lives of disabled people easier.
But again, my hopes were dashed. After all, just because I feel empathy for autistic people doesn’t mean that New York Times reviewers do. (It’s a Theory of Mind thing. I’ve learned that other people don’t feel my level of empathy. Shocking, I know — both that I’ve figured it out and that other people lack a modicum of sensitivity.)
I began to realize that I’d been overly hopeful when I read the next paragraph:
The film follows the men, Tracy Thresher, 42, and Larry Bissonnette, 52, on a trip that takes them (and their two heroically patient aides, Harvey F. Lavoy and Pascal Cheng) to Sri Lanka, Japan and Finland, where they demonstrate their communication skills and meet other adults with autism who have been making similar strides.
Did this man say “heroically patient aides”? Oh, God in heaven, will people stop it with how heroic people are for assisting disabled people? Please?
I wouldn’t have minded “patient aides.” After all, it does take patience to assist people who take a long time to communicate their thoughts and feelings. But “heroic”? What’s heroic about being patient with these two men? I generally save “heroic” for choices that involve potential physical harm, like running into a blaze to rescue a child or staring down a tank in Tiananmen Square. And, given that Thresher and Bissonnette are nonviolent people in control of themselves with a mission in life, I have to wonder exactly what merits the label of heroism — apart from the fact that disabled people are almost universally seen as burdens on their caregivers, that is.
Apparently, it’s the fact that the text-to-voice technology can’t speed things up enough for the reviewer:
It’s slow going as Mr. Thresher and Mr. Bissonnette tap tap tap out their thoughts a keystroke at a time, but maybe some day this film will strike us the way 20-year-old movies with mobile phones in them do now: “Wow, such primitive technology compared with what’s available these days.”
I’m absolutely appalled by the illogic and insensitivity here. What technology in the world could possibly speed up the process for someone who needs to tap out his thoughts slowly? Brain implants? Telepathic circuits? What? The problem is not one of technology. The problem is that the New York Times reviewer finds the communication too slow going and, instead of accommodating his mind to the fact that some people just need to communicate in this fashion, he indulges in a fantasy of improved technology that will bring everyone up to a speed he can tolerate.
Never mind the heroic patience it takes to tap out one’s thoughts, one painstaking keystroke at a time, and to live in a world in which one is chronically misunderstood and dismissed.
Never mind that the men are actually communicating their thoughts after having been written off for much of their lives.
Never mind the content of the communication itself.
Never mind that the whole point is to make others sensitive about what goes on inside disabled people, appearances notwithstanding.
Never mind all that, because it really isn’t about disabled people. It’s about how we affect other people. And that’s all it’s about.
The only sentence in the entire review that sounds even remotely sensitive is the following:
The film is maddeningly vague how the two men made their initial breakthroughs, but it certainly is proof that even those who are written off as children can find a voice.
Yes, even people written off as children can find a voice. And it would be quite encouraging to all of us if people actually listened to what those voices are saying.
© 2011 by Rachel Cohen-Rottenberg
[Published in The Commons, March 23, 2011]
“Death with Dignity” Bill Promises Only Indignity
The least costly treatment for any illness is lethal medication. –Walter Dellinger
When I was younger, I fully supported physician-assisted suicide for terminally ill people. I believed that people who are dying should be able to decide when and how the end arrives, and that physicians should be able to make the process as painless and as dignified as possible.
After all, isn’t the decision to end one’s life a personal one? Doesn’t the right of self-determination dictate that one should have control over deciding the manner of one’s death?
If physician-assisted suicide had no consequences beyond the life of the person in question, the answer to both questions would be a resounding “Yes.” But living in society means that when a decision has a serious, negative impact upon the lives of others, we must limit a person’s ability to carry it out.
And so, as I reflect upon the consequences of legalizing physician-assisted suicide, I now find myself against it. The so-called “Death with Dignity” bill before the Vermont Legislature, if passed into law, would have a profoundly negative impact upon the lives of people who do not wish to avail themselves of its provisions.
In reading the bill, I find myself deeply troubled by the criteria by which one is eligible to choose physician-assisted suicide. So long as the patient is fully competent to make an informed decision, the only requirements are that he or she “must have a terminal illness and must have fewer than six months left to live.” A terminal condition is defined as “an incurable and irreversible disease which would, within reasonable medical judgment, result in death within six months.”
Now, in almost all discussions that I have ever had in my lifetime about this issue, proponents of physician-assisted suicide have always argued that it is simply inhumane to allow a human being to live in a state of agony, and that physicians must provide a quick and painless way out. The possibility of unendurable pain has always formed the basis on which most people have argued for the right to die.
But the “Death with Dignity” bill says nothing about ending one’s physical pain. This omission may derive from the fact that most kinds of physical distress can now be managed by medication; except for certain kinds of neuropathy, it would be difficult to identify a condition that would cause untreatable levels of pain. If such is the case, why would someone with six months to live want to end his or her life prematurely?
The answer lies in the word “dignity.” The bill’s proponents argue that one should be able to maintain one’s dignity in the dying process. And what are considered the barriers to dignity? In reading the words of those who support physician-assisted suicide, I have learned the following: It is considered undignified to be unable to toilet oneself. It is considered undignified to wear a diaper. It is considered undignified to be in a wheelchair. It is considered undignified to be dependent on the care of others. To some, it is even considered undignified to no longer be able to participate in so-called “normal” activities.
By implication, the bill suggests that finding oneself in any of these conditions is a perfectly valid reason to commit suicide.
I find this kind of reasoning both dangerous and deeply insulting. There are many, many disabled people who are unable to toilet themselves, who wear adult diapers, who use wheelchairs, who depend upon the care of others, and who cannot participate in the activities that typically able-bodied people take for granted. And, as should be obvious to all thinking people, their lives have the same inherent dignity and meaning as the lives of other human beings.
That we equate dependency and the wrong undergarments with indignity is nothing more than our own cultural blindness. It is a choice that we make as a society, and nothing more.
To equate disability — especially severe disability — with indignity is dehumanizing. And to imply that any of these conditions is a reasonable basis upon which to commit suicide is to devalue the lives of people who live with these conditions for years, decades, and lifetimes.
This kind of devaluation is the greatest possible indignity that a disabled person can suffer, and it leads to all the many indignities with which disabled people so often must contend: isolation, exclusion, indifference, resource scarcity, financial insecurity, and vulnerability to abuse. Such indignities have nothing to do with a state of being disabled. They have everything to do with a society that devalues human beings who are not typically able-bodied.
In such a society, we must not avail people the option of ending their lives because they have internalized a fear and hatred of disability. Instead, we must love and support people through the process of dying, a process that comes to all of us.
After all, the decision to end one’s life does not take place in a vacuum. It takes place in a society that devalues those who are fragile, dependent, and vulnerable. If, as a society, we communicate that disability is undignified, that true worth derives from independence and “productivity,” and that we support suicide for those on the “wrong” side of the equation, how many people can bear up against that sort of thinking and make a truly independent, empowered decision at the end of life?
How many people, in the midst of the dying process, are even aware that the value system in play is arbitrary and prejudicial?
Certainly, there are provisions in the proposed bill that seek to ensure that people make decisions free of outside pressure, but realistically speaking, such safeguards provide no guarantees. A person in a weakened physical condition, dependent upon family members for housing, medicine, transportation, and care, is unlikely to tell a doctor that the people upon whom he or she depends are exerting pressure to end it all.
This kind of pressure can become magnified when money is at stake; family members have been known to feel that it is better to safeguard an inheritance than to spend it on expensive care.
Given that family members can feel this way, imagine what pressure the insurance companies would bring to bear upon a person when suicide is an option. When people who are non-ambulatory and dependent are considered to have lives without dignity, it is not unreasonable to assume that, in a healthcare economy of scarce resources, cost-benefit analyses will come out in favor of those considered “more deserving” — that is, those who have the potential to survive and to become “productive” once again.
Treatment will be denied people considered unworthy of it, but suicide will always be covered.
Would such decisions contribute to the dignity of anyone with a serious medical condition? Not by a long shot.
A number of Vermont disability and healthcare groups oppose physician-assisted suicide, including the Vermont Center for Independent Living, the Vermont Coalition for Disability Rights, the Vermont Medical Society, the Vermont State Nurses Association, the Vermont Organization of Nurse Leaders, and the Vermont Alliance for Ethical Healthcare. National organizations such as the American Medical Association (AMA), the Disability Rights Education and Defense Fund, and Not Dead Yet also oppose it.
Please add your voice to the chorus of opposition to the “Death with Dignity” bill. Let your legislators know that its provisions threaten to deny each of us the dignity that we deserve at the time of our greatest need for the compassion and respect of others.
We are all fragile. We are all vulnerable. And we all deserve to live in a society that respects and safeguards the inherent worth and dignity of every life.
© 2011 by Rachel Cohen-Rottenberg
Temple Grandin said recently that the principal emotion experienced by autistic people is fear. Of course, there are any number of reasons for that fear—the experience of having been bullied or otherwise abused, the painful nature of sensory overstimulation, the realities of social isolation, and so on—but whatever the reasons, the anxiety is real.
I have felt the undercurrent of fear all my life, and these days, it’s become more intense. I’m aware that it keeps getting hooked onto a number of different scenarios, both real and imagined. I’m not going to rehearse them, because they are not the source of the fear, and going into particulars would only give the fear more power. None of these situations causes me to be afraid; rather, the fear seems to be there, and it attaches to whatever future scenario comes to mind.
Right now, the fear feels like a chill wind blowing right through me. I have periods of release from it, but when it arises, it’s very difficult. I’m assuming that it’s arising because, having formerly been damped down by five years of benzos, it’s now free to express itself, and it wants my full and undivided attention. And the fact that I keep saying to it things like, “Well, I’m doing the food shopping right now, so bugger off,” doesn’t seem to send it packing. The fear is not getting in the way of my daily functioning. I am continuing to go about my life, taking care of business, fulfilling my responsibilities, and doing the things I enjoy. But I feel like I’m carrying a burden that I’d like to put down for awhile.
Part of me feels that dealing with my fear is a good thing: being able to face one’s fear and handle the experience is strengthening. But part of me would like a serious break, too. So, I’m going to my doctor on Thursday to talk about getting a prescription for Lexapro, an SSRI that is supposed to be very good for treating anxiety as well as depression. I don’t feel depressed, but dealing with the anxiety every day is an emotional burden, and trying a little bit of pharmaceutical help isn’t a bad idea. I don’t necessarily want to banish the fear entirely, since it’s a lifelong issue that needs to be dealt with, but I’d like to lessen its intensity and make it more manageable.
© 2011 by Rachel Cohen-Rottenberg
Journeys with Autism by Rachel Cohen-Rottenberg is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Journeys with Autism