Shut-down of MDA Telethon inspires former ‘poster child’ to reflect and share vision
By Emily Wolinsky
In 1984, at age seven, I was selected to represent the Muscular Dystrophy Association as its Greater Rochester Area/New York State “Poster Child.” This was a big year for me. My smile was spread all over the area in photos and local commercials. I met a lot of people, and I was sent to camp for a week with other kids that looked just like I did.
This was also my earliest memory of disability. Before the MDA Jerry Lewis Labor Day Telethon, I didn’t know being different was a problem, or that I needed to be cured. I also didn’t realize that I had a life ahead of me of being different.
The Cure and Santa Claus
As the years rolled by and I grew to become an adult, I soon realized that the “cure” my family was promised was a well-positioned fantasy, and that the true “disease” that I “suffered” from had nothing to do with Spinal Muscular Atrophy, but rather a general dismissal of disability by the greater society that I lived in; a society that never really found out what happened to Jerry’s kids after they grew up and didn’t care.
So what happened to “Jerry’s Kids?” Where did we go after attending MDA summer camp? What happened after Jerry Lewis sang, “You’ll never walk alone” at the conclusion of the telethon? Did we suffer and die? Or did we flourish and shine?
Well, I suppose it depends. A lot of it came down to our access to great medical care and technology, our support system, our education, our financial stability. Yes, some of us suffered and died. And yes, some of us flourish and shine. But very little of it had to do with the dollars that were dropped into a fireman’s boot or the shamrocks that were purchased. In fact, for me at least, I figured out as a teenager that MDA was more about idealism and childhood than the reality of living day to day with a disability as an adult.
After many years of disassociating myself from MDA, in 2012, I had the fortune of invitation. This invitation was as close to a “cure” for my “disease” as I will probably ever get. Jeff K. Hoffman, an adult with Spinal Muscular Atrophy from North Carolina, started a Facebook group called “Living with MD”, and a group member, who knew I was eager to meet and connect with others who were living as adults with neuromuscular disabilities, invited me to join.
This group changed my life in fantastic ways. The power of connection, advocacy, and empathy has made every single day better. The 794 members from all over the world remind me that I am not alone and reinforce the belief that with access to great medical care, a solid support system, education, and financial stability, barriers can be broken down.
In this confidential support group I’ve learned much about what Jerry’s grown children now face. The transition to adulthood was not easy for many of us. The knowledge to make the transition to independent living is severely lacking, along with access to personal attendant care, housing, transportation, therapies, technology, education, and employment. Yet, within “Living with MD,” hundreds of experienced and brilliant advocates post daily with advice for living.
Within this group, I’ve also come to realize that the MDA is not a big, bad, terrible thing, but it is has evolved into an organization that is missing a huge mark. That mark is the MDA’s forgotten kids who can contribute in ways so much greater than any we were credited for as children. We are educated, we are skilled, and we understand more than anyone else what a neuromuscular disability does.
Only 17.6 percent of people with disabilities are employed, whereas the employment-population ratio for those without a disability is 64.0 percent. I have met so many adults with neuromuscular disabilities (NMDs) who have degrees and are looking for meaningful work, yet the majority of MDA local offices do not have a single person with a NMD working at them!
Why is this? I suspect employing adults with NMDs would be bad for business. If these poster kids now adults were put to work, we wouldn’t be perceived as incapable or suffering.
I will not support the MDA until it puts people with NMDs into inclusive, leadership, and management roles within the organization. I’ve grown tired of non-profits that exist for the alleged benefit of a population, but who do not employ the very people they supposedly exist for; who see us as a disease.
We are so much more than a disease. This is exactly why I helped start NMD United because our goal is to hire as many qualified individuals within our community as we can and serve our own. I am confident that NMD United will be able to do great things for people LIVING, not dying, without reducing our abilities to contribute and participate.
NMD United has a current board of 6 individuals with NMD – TK Small, Alex Landis, Greg Smith, Lorinda Gonzalez, Jeff K. Hoffman and me. Our attorney, Kevin Fritz, who helped us to set up our 501c3, has a NMD. Our web designer, Latish Jack Vohra, who we have hired to design our new website (coming soon!) has a NMD. Jenna Luzzo, a LMSW and our volunteer Counseling and Peer Support Coordinator, has a NMD. Our contracted Project Manager, Lauren Sanford, will help us with setting up programming this summer, has a NMD. And finally, our summer intern, Katherine Landis, a student at NYU who has a NMD, will focus on research and development.
It’s not going to happen overnight, but my goal is to one day see NMD United become a household name, like MDA, but without the protests, tears, and inspiration porn. I believe we will help thousands upon thousands internationally without having to resort to diminishing our existence to a medical problem that needs to be erased. We have grown to be so much more than that.