Keith R. Murfee-DeConcini
2014 Summer Intern
I'm Keith R. Murfee-DeConcini and thanks to the trust of YAI and its continued commitment to promoting diversity, I have been given the opportunity to write for YAI's blog as part of my summer internship with the organization. Each week I will bring you different perspectives about disability issues. You will be able to make comments, as well and we all look forward to what you have to say.
Yes, as you might suspect, I have some disabilities that stem from birth. I was born at New York Hospital on October 30, 1984, weighing 2 pounds, 11 ounces, three months premature and nearly died in the middle of December of that year. A few weeks before that fateful time, I pulled out my breathing tubes from my nose and proceeded to breathe on my own for eight hours, much to the amazement of the doctors, nurses and everyone else in the Neonatal Intensive Care Unit (NICU).
For my first 99 days in intensive care, I lived in an incubator which my mother, Elizabeth Murfee, used to bathe me in classical music by placing a tiny tape recorder inside. She was at my side every day that I was in NICU, sometimes staying as much as 20 hours a day. She also saw that I got every available intervention as early and often as needed. At my naming ceremony, held in the chapel at New York Hospital the day I was released, one of the doctors noted that if I had stayed in NICU 100 days, they were going to name me an honorary doctor.
At 18 months of age, I was diagnosed with mild to moderate cerebral palsy, hypotonia type, hemiplegia at the preemie clinic at New York Hospital. Hypotonia means decreased or floppy muscle tone, while hemiplegia means that one complete side (arm and leg) is affected by cerebral palsy. In my case, mainly the right side is affected.
I have been fortunate to live in various parts of the country, receiving my associates degree from Landmark College in Putney, Vt.; my bachelor's in creative writing from the College of Santa Fe (now, Santa Fe University of Art and Design) in New Mexico. Currently, I am in the process of earning my master's of public administration from the University of Arizona (UA), with a specialization in disability policy. It so happens that UA does not offer graduate courses in disability policy, but CUNY (City University of New York), School of Professional Studies has an excellent program, so I am back in my hometown for a year.
I have been a writer most of my life and have written in many mediums, including poetry, fiction and non-fiction; and like my mother, I am a published author. While living in Tucson, I served as Vice Chair on the Mayor's Commission on Disability Issues, one example of my activism in disability issues.
Every day I seek to change and enlarge the notion of what someone with a disability can do, which has become my life's passion and mission. Some people view me as a "Super Crip," as I am relatively high performing but those skills mean nothing without passion. Passion is the fuel in the fire and it is that fuel that inspires me to challenge everyday notions about what people with disabilities offer the world. Join me this summer in this movement!
The winter 2014 issue of our New York City Self Advocacy group's newsletter features a tribute to Tom Dern, our C.O.O. who passed away unexpectedly in December.
"Living, Loving, and Working" were the words printed in black and orange on our T-shirts, as we proudly returned to the yearly "Leadership Summit" at the CUNY Graduate Center recently. Last year, the Self-Advocates presented their Moth Stories, receiving a standing ovation. This year, we were invited by YAI staff who are singers and musicians, and asked to join them in performing the song Innovate: Zimbabwe by Bob Marley. We sang our part of the song proudly: "Brother our rights, our rights, It’s so right! We gon live, We gon love, we gon work, WORK FOR OUR RIGHTS! Innovate!
Afterward we joined a post-event celebration at a nearby pub, all of us sitting enjoying the foods served, saluting every person who helped and guided us, including CEO Stephen Freeman, the band, each other, and our late friend Melvin Palmer. It was a great day to be a self-advocate and a great day for all YAI staff. As Car'Melo would say proudly, "azucar!" Me, I would add "palante" English for "go forward!"