Don't Call Me Inspirational by Harrilyn Russo

This book had me at the title. Although it's been hard to put words to the reason why, I've always felt uneasy at being called "inspirational" by people who know nothing other than my statistics—my age and my diagnosis at worst, perhaps also my marital and career status at best.

In her book, Russo puts words to my unease and also provokes thought on the topic of disability. Although I have never identified as disabled, there are several areas in which Russo's experience can be correlated to life with a rare condition. Russo grew up in an environment where normalcy (and denial of disability) was not only encouraged, but in some ways, demanded. Later in life she became a disability rights activist, which plunged her into a world where she was faced with many things she had become accustomed to denying. Through it all, she realized that living with disability alone (even if "living" included being on her own, earning a graduate degree, pursuing a rewarding career as a therapist, and finding love) did not warrant an "inspirational" label (or, perhaps worse, "courageous") and that this label in such cases is, in fact, a demeaning reflection of lowered expectations. Although this is a minor point in the overall narrative of her book, it is one I take to heart.

In one instance, she describes telling a story about the frustrations and hilarity of being taught to drive by her mother to a group of her students. Although the group in general responds with laughter, she notices one student who is crying. She realizes that this particular student has heard tragedy in a very typical experience (emphasis mine):

"I have been telling a tale about my mother teaching me to drive. My mother's persistence and insistence despite my resistance make everyone laugh except this student. My mind is flooded with questions: What do you see or hear that transforms a typical mother-daughter tangle into a tragedy?

"How can I convince you that the tragedies of my life have to do with commonplace disappointments, disillusionments, and losses—the lover, the job that got away, the death of someone dear—not disability? Perhaps I can't. You need to keep me at a distance, as though I were contagious. To see me as a sister scares you, shakes you, shocks you. Then I would be like you, and what's worse, you would be like me. Better you should see me as courageous."

This really resonated with me. On social media, for many people, I am not a friend or a sister. I am a rare disease patient and a role model. I can't cross the line that's been drawn (passive voice intentional; the blame may well fall on me) so I remain the courageous one for conquering the ambiguous feat of "living with cystinosis." (In my opinion, there can be no courage without choice, and I think it's a ridiculous misconception that the things I do are hard simply because I have cystinosis as a beautiful backdrop to my life story.)

Although Russo has CP (cerebral palsy), which is very different from cystinosis, she and I do share a similarity in that we both have difficulties with unclear speech. This is something that has been the hardest adjustment for me, as it only became an issue around the time I entered my 30s. Like Russo, I sometimes ask myself this question, posed to herself in her book: "Having impaired speech was simply a fact of my life; why couldn't I acknowledge that fact and move on?"

But I think reading Russo's story helps me to answer this question for my own part. As an activist, Russo engages with the disability community (and with communities in need of disability education) often in that role. But it's only a part of who she is. At other times, her condition is not front and center: life is. (And let's not confuse or equate any condition with life itself.) Maybe she's focused on paying rent. Or making a grocery list. Or doing any number of things that have nothing to do with CP or activism. As she describes with regards to her impaired speech when making a routine phone call (censorship mine):

"I was willing to deal with issues of power and stereotypes when I deliberately chose to take on the activist role, not when I was trying to make or receive a ... phone call."

She describes how even if she were to confess her speech difficulty when making a phone call as a way to explain why she is hard to understand, it is not something that would merely garner an "okay" response that would enable both caller and called to move on. Such confessions always seem to be not simply accepted, but instead tragically received with the inevitable "I'm sorry."

"Such a response would be judging my life as something to be sorry about rather than simply a life that could be good or bad or both or neither. And that judgment infuriated me, made me want to scream. Maybe I was judging the caller unfairly. Maybe she or he would simply say 'okay' in response to my saying I had a speech disability, and then the conversation could move on. But I seriously doubted it."

Russo eventually finds that a Botox injection to her vocal cords, especially a single initial treatment, brings clarity to her voice. Her response to this treatment (which eventually wears off) is enlightening: 

How sad that health, sanity, and intelligence are so often attached to communication. (Then again, should good health necessarily be attached to, say, speechless athletic ability any more than poor health should be attached to speaking ability? We need to look at the whole person, and also listen closely to how that person identifies his or her health.)

Russo also celebrates the coming together of individuals with disabilities and describes what that kind of community means to her. There is something very cathartic that comes with finding that similar person in a crowd:

"And I have fond memories of exchanging "You've got to be kidding" looks with a group of disabled women at another women's gathering when a nondisabled member of the audience made a patronizing "You're so inspirational" remark to a disabled woman who had just completed her presentation."

Russo motivates me to speak out more and look for ways to help adolescents and teens avoid the victimhood trap. I was intrigued by her experience leading a mentoring program in which women with disabilities were matched with adolescent girls with disabilities. She found that when conversations about disability and coping were forced, success was minimal; however, the very act of these girls doing normal things with their mentors—visiting places of employment, seeing the women's accessible apartments and living spaces, taking public transportation, exercising independence—made the girls gain in confidence and feel assured of an independent future. 

Russo is hard-hitting in her description of how she views herself, but she also takes her readers on a journey through her evolution in this area. 

Other favorite quotations:

"I'll tell you why I am inspirational: I put up with the barriers, the barricades ... you put between us to avoid confronting something—probably yourself—and still pay the rent on time and savor dark chocolate. Now that takes real courage."

"There's nothing tragic about my life except other people's negative ... assumptions."

If this topic interests you, I also recommend Stella Young's TED Talk, I'm not your inspiration, thank you very much.