Redefining Disability Question 1

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the first question posed in the Redefining Disability Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up in later questions. This first question is really four questions and I will answer all components of the challenge.

Q – What is your experience with disability? Do you have disabilities? Do you have loved ones who live with disabilities? Do you work with people who have disabilities?

Disability has always been a part of my life. I was diagnosed at the age of three with a form of muscular dystrophy. Actually, I was misdiagnosed the first time around. For the first half of my life, I thought I had Charcot-Marie-Tooth (CMT) disease. CMT, also known as peroneal muscular atrophy, is a disorder which affects the peripheral nerves. These nerves are outside the brain and spinal cord. They relay nerve signals to the muscles and sensory organs in the limbs.

When I was twenty-two I was correctly diagnosed as having a form of Spinal Muscular Atrophy (SMA). SMA is a motor neuron disease and affects the part of the nervous system responsible for controlling voluntary muscle movement. There are different types of SMA. Doctors tell me I have some symptoms of Type 2 but my progression more closely resembles Type 3. Medical professionals have offered genetic testing but at this point, testing will not make a difference in my daily life so I have decided not to pursue any further investigation into my diagnosis.

I was able to walk until I was twenty years old. In May 1994 I had surgery to fuse my left ankle so I would not have to live with chronic pain. The surgery left me in a cast for the next three months. Despite four additional months of intensive physical therapy, I was not able to regain the strength to walk again. I knew there would come a time when I would require a wheelchair for all of my daily mobility. I was not prepared for it to happen during my senior year of college. I dealt with it as I usually deal with unpleasant declines in my physical ability – by ignoring it and pushing away those friends who encouraged me to attend to my emotional and mental health. I’m glad they stuck with me and were forgiving.

I began using a power wheelchair in 2002. This change made a huge difference in my ability to engage with the world around me because I no longer spent all of my energy propelling my chair and battling inclines. I began to use personal assistance at home in 2007. I manage my own care using Consumer Directed Personal Assistance (CDPA). Instead of being dependent on a homecare or nursing agency to control my life, CDPA allows me to recruit, train, supervise and manage the staff I choose. This self-directed model of care allows me to live as independently as possible, in the community where I belong.

I have many friends and some family members who live with a variety of disabilities. As my family members age, they are facing some of the challenges of adjusting to reduced mobility or the need to alter their daily routines. This has brought about some meaningful and eye-opening conversations about what it means to be independent when one relies on others for assistance.

I am not typical when one looks at disability statistics in the United States in an important aspect. I have been employed full time continuously since November 1996. According to the American Community Survey, a US Census Bureau Survey, only 20.9 percent of non-institutionalized persons of working age (21-64 years) with a disability in the United States were employed full time in 2012, the most recent year for which numbers are available. Compare that number to the 56.4 percent of non-disabled persons of working age who are employed full time. In other words, nearly 80 percent or four out of every five persons with disabilities between the age of 21-64 are NOT employed full time. The numbers in some states are even more stark – like West Virginia where only 15.3 percent of working age persons with disabilities report full time employment lasting for a year. The percentage in my home state of New York is 20.1. You can see the numbers for yourself at the Disability Statistics website created by the Employment and Disability Institute at Cornell University. The reasons for this gap are many, and I am hopeful future questions will permit me to address these.

All of my full time employment has been related to disability in some way. I am a licensed speech-language pathologist and worked in geriatric rehabilitation for the first ten years of my career. I then worked in a public health program tasked with improving health and wellness for persons with disabilities and creating a more inclusive public health infrastructure. I am now employed by a disability related nonprofit organization. My job is to educate, communicate and advocate for CDPA as an alternative to the traditional medical model of homecare. I encounter a variety of disabilities in my daily professional life.

My personal and professional life experiences with disability make me a stronger advocate. My exposure has provided me with empathy towards others of all abilities. The peer support I have gained over the years has been beneficial to my success navigating challenges and obstacles. I also revel in knowing I belong to the only minority group anyone can join at any time – and if you live long enough chances are you will join “my group” as incidence of disability increases with age. I can never be Asian. I can never be Black. I am not a lesbian. But anyone can end up disabled, temporarily or permanently. When I advocate, I am not seeking access for just me but access for all.