I had been disabled for six years when I became an adoptive mother. To obtain a reception license, my doctor had to attest to my ability to parents.
I aygua for asking him.
The degree to which I present as disabled varies. If I am not using my wheelchair, and if I am sitting somewhere with an adequate support cushion, I can appear well. But, my diagnoses, dysautonomy and ehlers-donlos syndrome, both cause relentless symptoms that make them sit, stand, lift, eat, drive and walk difficult or impossible.
My doctor knew the reality of my disability. I had witnessed my pain and uncertainty. I had seen myself curled up on his table, crying. I knew how difficult it was for me to take care of myself, how much I trusted in prepared food and the help of friends. I couldn’t imagine what he would say when I asked him to support my ability to take care of another person.
His office had two seat options: a metal chair with cushions and the exam table. For most appointments, I waited for him on the table, lying on my side with my bag like pillow. Sitting in a chair is extremely difficult for me.
This time, I forced myself to wait in the chair. Maybe if I sit there, I would forget all the visits they had arrived before. The room shook and turned, my vision vanished. Push.
Dr. Stern entered and sat down. “What brings you today?” asked. I spoke quickly, explaining how much my partner, David, and I had thought about the decision to be adoptive parents. The preparations, the money we had saved for the care of children, their parental license. Dr. Stern listened carefully and asked a couple of questions.
I replied the best I could, but this is what I still did not know completely: being disabled had prepared to be a father.
Before being disabled 14 years ago, I looked for happiness and success with a manic and implacable impulse. Here is an example: while I hoped to have news of a postgraduate program in 2007, I obtained my real estate license. I hoped to earn some extra money that could help pay the school. My Excel compulsion, however, had other plans. Instead of simply keeping the registration, I became one of my great company’s best sellers in the first year, I opened a new company with other women in my second year and I was appointed one of the best agents in the country in my third year.
Working so hard requires regularly canceling other physical and emotional needs. Sleep, comfort and pleasure are forgotten. Even my vacation extended during a Swiss watch schedule with the best restaurants, the most dynamic neighborhoods and the places of privileged information.
No one will be surprised to hear that my body did not escape my anger. I ran every morning, I made yoga several times a week and packed every meal with more nutrients than anyone could use.
I disabled on an August afternoon while I was on a walk in Santoroni, Greece. A diversion led to heat exhaustion, which led to an electrolytic imbalance, and the combination triggered a latent genetic condition. The day before the walk, I ran and danced. The next day, I could barely get out of bed.
For two years after the walk, I looked for answers. When the doctors ruled out my symptoms, I was asked if they were right. Was I worrying too much? After my diagnosis, I spent two years crying and accepting my new reality. I finally admitted that I would be sick forever. But then, the way I labeled slowly began to change. The word ‘disability’ began to arise more: my parking paragraph for disabled, student services for disabled, disability insurance payments.
For me, being sick It was pure loss and suffering. But be disabled Something new suit: culture. It was now part of the long line of disabled people who had come before me. I Started to Inhale Books and Essays by Authors Who Are Disabled and/Or Write About Disability: Eli Clare, Elizabeth Barnes, Julie Rehmeyer, Toni Bernhard, Jean-Dominique Bauby, Nasim Marie Jafry, Meghan O’Rourke, Leslie Jamison, Maya Dusenbery, Laura Hillenbrand, Rhoda Olkin, Cheri Blauwet, Erin Raffty, Amy Berkowitz, Nancy Eiesland, Susan Sontag, Madelyn Detloff, Rosemarie Garland-Thomson, Alice Wong, Leah Lakshmi Piepzna-Samarasinha, Elliot Kukla.
The thoughts and lives of these thinkers changed the way I saw my own story. I began to notice the ways in which disability had changed more than just my physical capacity. The years after the walk they have taken my hands from their death grip to perfectionism. For so long, I had felt that my life was almost Good enough, and I drowned in the deficiencies. But disability fundamentally changed my perspective. Every day is difficult, and a decent life is revealed in our ability to connect to each other, witness good times and tell the truth about our lives.
The brilliant of my life before the disability cheated me so that I thought that with enough effort, I could qualify all my existence into something ideal. My days are now slow, painful and unpredictable. But my central belief about what day ought Be has totally changed. I don’t think the goal is perfection, or even joy. I think it’s courage to tell him the truth.
Becoming a father is not so different from being disabled. Despite our best efforts, the raising of children is often messy and unpredictable. Becoming a father releases our illusion of control, or will, if we leave it.
When I imagine how it would have been the non -disabled version of me with a newborn, I feel so sad for her and the baby. Those first days of parenting have such uncertainty, stillness and pain. She would have criticized everything. She would have lost it.
On the other hand, when my son came home at eight days, he had been training, for years, to take things when they arrived. I was an expert in the days past in bed. I was happy to wait.
Thank God, I was disabled when I met my first adoptive child, whom we soon adopted, and then, seven years later, my second child. Because, as a result of this limited and sore body, it could actually be there.
Dr. Stern signed the form. “A child will be lucky to have you,” he said.
He was right.
Jessica Slice is the author of not suitable for parents: a disabled mother challenges an inaccessible world, who leaves tomorrow. His articles have also appeared in The New York Times, The Washington Post and Glamor. She lives in Toronto with her family.
PD more about disability, including how to help children navigate in disability meetings.
(Photo of Liz Cooper.)
