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.

18 thoughts on “Redefining Disability Question 1

  1. What a multi tasker you are, answering 4 questions in 1. 🙂 One of the most amazing things about your disability, and I know you have spoken of it before, is how our parents, and extended family, treated you like any other child. They expected you to succeed, and so you did.
    What the rest of us learned, however were the things that helped make your day easier such as ramps, curb cut outs by side of roads, wider doorways and handicapped parking spaces, not to mention spaces in clothing stores to operate a wheel chair or dressing rooms for changing. We have all seen significant changes in the past 40 years.
    This club has to be the largest growing organization with all the baby boomers out there.
    Thanks for making me more aware of ways to make things just a little easier for others. Can’t wait to read more.


    • I agree – the expectations for success which were placed on me really have helped me view myself as capable. I’m sure I will be given the chance to address this in future questions. We have indeed seen significant changes in the past 40 years, and I am hopeful things will continue to progress in the future. There is truth to your point – until one encounters someone who needs the accommodations, it’s easy to overlook the importance of what might be perceived as something small. A curb cut may not seem like a big deal until one has to travel two extra blocks to find a way off the sidewalk to safely cross the street.

      Liked by 1 person

    • I guess I need to re-think the way the questions are structured or something, because this is the second time someone has commented on “answering multiple questions in one.” I didn’t really perceive these as multiple questions, but rather suggestions for topic content. Not everyone has direct personal experience with having a disability, but some people might work with people who have disabilities or have family members who do. This challenge is open to those people as well. 🙂


        • Rose – where do you live? Unfortunately, CDPA is not available in all states in the United States – and it varies greatly from state to state. I continue to live in New York because of my access to CDPA. Trust me – I would move to a warmer climate if I could have the same access to the program as it is operated here.


      • I really didn’t mean it as a criticism of the challenge. I think having the multiple questions leads to a more thorough response, and a deeper understanding of a person’s interaction with disability.

        Liked by 1 person

  2. As someone who is a ways ahead of you in this challenge, I will say that there will be plenty of room to explore many topics and experiences. I have loved every single question I have answered. I enjoyed reading this answer and I look forward to your future Wednesday posts on your experiences with disability.


  3. A few things:
    1) I had NO idea Cornell had an Employment & Disability Institute, which I’m surprised about because I go to school in Ithaca and have talked to a lot of people in the field of disability for various journalism projects, yet nobody ever mentioned it. Something to keep in mind!
    2) I’m studying to be an SLP, but I’m not sure if it’s actually the field I want to go into after realizing how much science it entails. It’s interesting for me to see how you started there and then transitioned into a public health/advocacy role. Reading this may have actually made a huge impact on what I’m thinking about for post-graduation plans.
    Looking forward to the rest of your challenge responses!


    • Sabina, Cornell has some really useful information. I hope you’ll visit their website. Or go see you them if you are in Ithaca!

      I will always be a speechie, no matter what. For me, it all goes back to the awe I have for human communication. It is a demanding course of study but don’t give up if it is really what you want. I’m happy to talk to you more about it if you want.

      Liked by 1 person

      • I looked at their website but I may have to go visit too!
        And I would love to pick your brain about your different work experiences at some point. I’m gonna hang in this semester and try to shadow/soul search over the summer. We’ll be in touch for sure.

        Liked by 1 person

  4. I would like to age in place but as I take a look at my house I know that this will require significant changes. A spiral staircase? Multi level decks with lots of stairs? Living 20 miles from a town with services? Every time I think about an update or minor renovation I’m beginning to think of the future.
    Some of the changes: moving my office out of that loft with those spiral steps down to the main floor, changing my mind about moving the microwave from an under the counter cabinet to an over head one.

    When I’m out and about, I take a look at the merchandising displays in stores and know that those in charge haven’t given a thought to the fact that people who use wheelchairs make purchases, too.


    • It is easier to make those little changes now before they are necessary than to find yourself in a position where you can not live at home because you need accommodations. At least you are thinking about the future which is more than some. You have a greater awareness about what is around you because of your exposure to people with disability, and I think that is a good thing. Awareness makes us more empathetic and understanding. And even though I can’t access the stairs, I like your multi level deck 🙂


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