Call Harilyn Rousso anything but “Inspirational”

In this blog entry, Harilyn Rousso explains why she titled her memoir  Don’t Call Me Inspirational

Rousso.HarilynWhen I was thirteen years old, in junior high school, I found myself standing next to my gym teacher during a fire drill. When she saw me, she put her arm around my shoulder and said, “I want you to know how inspirational you are.” I was perplexed since in gym, as a girl with a discombobulated walk and poor coordination in my arms and hands, the result of cerebral palsy, my performance was mediocre at best. Then she went on: “I understand that you wash and dress yourself. That is truly amazing.” What was she talking about? I had been washing and dressing myself since I was four years old. In my confusion and embarrassment, I could only respond “Thank you.” But I was wondering why she expected so little of me that even my most modest achievements could inspire her.

Since that incident many years ago, I have repeatedly encountered people who call me inspirational, usually people who barely know me. They stop me on the street, in the supermarket, or at some event where I am scheduled to give a talk or run a workshop. They know nothing about me other than how I look, with my disabled body, or how I speak, with my disability accent. From those clues alone, they declare me inspirational. The most disconcerting are the “inspirational” comments from those who have just heard me speak or conduct a training session. In the past, I’ve told myself that perhaps they were inspired by my words or my ability, through the training process, to change attitudes toward disability. But when I inquire why they find me inspirational, I hear: “If I were you, I’d never leave my house, much less speak in public. You are so brave, truly amazing.” I get this reaction even when I have just given the most hostile, confrontational speech, challenging people’s stereotypes of me and other people with disabilities as sick, helpless, dependent, or, in more pseudo-positive language, brave, courageous and inspirational. In some of those speeches, I insist, demand, cajole or even beg that they don’t call me inspirational. But my words don’t matter. They have only responded to the seeming imperfections of my voice and body.  Why do so many nondisabled people expect me to retreat to my home and hide? Why do they harbor such limiting assumptions about the potential and quality of my life?

Those of us in the disability rights movement joke about our “inspirational” status. We go to events featuring writers, painters or other artists with disabilities and wait for the inspirational comments, knowingly looking at each other and rolling our eyes when we hear them, which inevitably we will.

Don't Call Me_smWhat compels nondisabled people to repeatedly engage in such misguided, oppressive labeling?   What I experience most profoundly when nondisabled people call me inspirational is a sense of distance, a barrier they have created between them and me. It is as though they are afraid to really get to know who I am and then run the risk of relating to or identifying with me as a peer. To do so would render them vulnerable, since they perceive me, a disabled person, as vulnerable. They cannot allow themselves to imagine a disabled person as strong, competent and at ease with herself, disability and all. Of course all of us, disabled or not, are vulnerable in one way or another. But in our “can do, must do” culture, vulnerability, imperfection, the possible inability to do ordinary tasks is a secret fear that most people try to keep from themselves. People with disabilities appear to embody that fear. We are a threat to others’ sense of wholeness and invincibility. I think they imagine that if they were vulnerable like they perceive me—or any visibly disabled person they see—they would have to abandon an active life and possibly even end their life. What a sad assessment, particularly given that most people, if they live long enough, are likely to acquire a disability. What can be done to change their vision of their own future? And, damn it, what can I do to stop people from instinctively calling me inspirational without knowing who I am?

I attempt to do that in Don’t Call Me Inspirational: A Disabled Feminist Talks Back. Will I succeed? I am not sure. The “inspirational” myth is tenacious; people hold onto it as though their lives depended on it. In fact, their lives would be enhanced if they could give up the myth and see me and my disabled sisters and brothers for who we really are. Then the reality of aging and possible disability would become less terrifying.  Occasionally, when I develop programs or engage in activities such as writing or painting that hopefully transform how people think and feel, I am proud to accept the “inspirational” label. But most of the time, my life is fairly mundane—going to the grocery store, paying the rent, spending quality time with my life partner and close friends, eating more chocolate than I should, and so forth. Sound familiar? That is the point.

 

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