"What Happened to You?"
Illness and disability come in many forms, and aren't always well understood by those not experiencing them. Women and girls living with disabilities are frequently subject to "multiple discriminations" and are among the most vulnerable, because of the "persistence of certain cultural, legal and institutional barriers" (UN). Presented in honor of Women's History Month, the following list of women share what life is like for them as they navigate disability, the aftermath of illness, and living a life of one's own.
1. Autobiography of a Face, by Lucy Grealy
Grealy tells of her experience with Ewing's sarcoma, an often deadly form of cancer she was diagnosed with at age 9. Subsequent surgeries removed a third of her jaw and left her grappling with the physical and psychological effects of being ill and ridiculed by her peers.
"I spent five years of my life being treated for cancer, but since then I've spent fifteen years being treated for nothing other than looking different from everyone else. It was the pain from that, from feeling ugly, that I always viewed as the great tragedy of my life. The fact that I had cancer seemed minor in comparison."
2. Nobody Nowhere: the Extraordinary Autobiography of an Autistic, by Donna Williams
The first of four memoirs by Williams about her life with autism, Nobody Nowhere explores her childhood misdiagnoses and being labeled psychotic, abusive relationships and struggles to connect with others, and an eventual diagnosis of autism in adulthood.
"The anxiety of my inner battle was becoming unbearable. I could say words but I wanted to communicate. I wanted to express something. I wanted to let something out. The anxiety would have been so easy to give in to; whereby I would again lose all awareness of self and my surroundings."
3. Shouting Won't Help: Why I--and 50 Million Other Americans--Can't Hear You, by Katherine Bouton
Bouton, who went deaf at age 30, writes about her own experience with invisible illness and the many issues facing the nearly 50 million people who live with some form of hearing loss. From the shockingly staggering costs of hearing aids, her own personal denial of her condition, and in speaking with doctors and learning how others live with hearing loss, Bouton beautifully delves into a frequently misunderstood condition that is much more common than we think.
“We hear as we breathe — effortlessly — until we can’t.”
4. Too Late to Die Young: Nearly True Tales from a Life, by Harriet McBryde Johnson
Born with a form of muscular dystrophy, Johnson writes with frequent humor about making a life of her own as a disability activist and attorney. Johnson made a life's work of advocating for others with disabilities- including protesting popular depictions of the disabled via the media and the MDA's yearly telethon- and dismissing notions that those with physical disabilities are simply waiting to die, rather than capable of living fulfilling lives.
"I decide to embrace the death sentence. No need to fear it; no need to hasten it. Mortality is something all people share, a unifying force. Every life, whether long or short, is a treasure of infinite value. These things are true, I figure, and it's my job to say so. When I die, I might as well die honest."
5. "What Happened to You?": Writing by Disabled Women, edited by Lois Keith
The only anthology on this list, this collection of personal essays, poems, and fiction written by 36 women living with disabilities explores what it means to live as a women struggling and succeeding across the spectrum of illness.
"If I had one wish it would be to make a spell each morning to appear fully washed and dressed in my wheelchair. I never wish that I could walk again...to wish that I could walk again would be wanting to turn myself into something so completely different that I wouldn't know who I was anymore." (Lois Keith, "This Week I've Been Rushed Off My Wheels")