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.
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.
Navigating Competing Worlds: The Elusive Ideal of Normalcy appears here by permission.
The most recent installment in Rachel Cohen-Rottenberg’s published memoirs is Blazing My Trail.
[image via Flickr/Creative Commons]