By Greg Smith
Why I have new pride in my disability.
“Disability Pride” is an expression that has new meaning to me now. It’s literal. I have pride in my disability. I mean, my exact disability… muscular dystrophy.
For several months, I have been a member of a Facebook group called “Living with M.D.” All of us have muscular dystrophy. And when I look around the virtual room, I see some serious brain flexing going on. I’m starting to think another name for muscular dystrophy should be “cerebral advancement.” There are some smart people in this group! These ain’t your grandma’s Jerry’s Kids!
Maybe it is because at an earlier stage in life, we were forced to start solving problems while other young children were getting used to their superhuman strength. Thinking and problem solving might be something we have a head start on. I don’t know, but I do know this. I’m pretty smart, but I’m not the smartest guy in this room!
I’m talking lawyers, corporate CEO’s, artists, designers, counselors, therapists, bloggers, journalists, comedians. And from all over the world. But it’s far from a nerd collection. My LWMD friends are some of the coolest people I’ve “never” met. For the first time in all of our lives, we have a place where we can talk about topics that nobody else can even begin to understand. And the result is that I’m frequently up late at night LMFAO at threads about sex, or food, or an obnoxious personal assistant, or the weird look on someones face that time they shook your hand so hard they knocked you over in your chair!
There are serious tips for life. I’ve learned about a cough assist machine that helped me recover from serious illness. I’ve learned who the best doctor in the world for my condition is. I have new ideas for foods that are easy to swallow for people like me. I’ve even read advice about what to wear to bed to allow me to turn over independently.
This Facebook group has literally changed my life. But before you build a desire to check it out, be warned. If you don’ have muscular dystrophy, you’re not getting in!
Jeff Hoffman created the group and is determined to keep the membership pure. It was launched in September and it already has 342 members.
“At 36, I realized that I knew no one… not one person… who had the same disability as myself,” says Jeff. “When I had a problem, or faced a situation unique to my disability, I had NO ONE to talk to. I felt very alone. So, starting the group was a selfish act: I wanted to connect, network with, and solve problems with other people in the same boat as myself.”
“Jerry’s Kids” have grown up. Our self-proclaimed daddy once said on the telethon, “My kids can’t do anything.” Here’s a list of several members and their web sites and blogs that prove the old man wrong. These are just a sample. Keep checking back because I’m sure this list will grow quickly. Enjoy!
- Blake Watson, Graphic Designer – http://www.blakewatson.com/
- Mike Ervin, Writer, Smart Ass, Blogger – smartasscripple.blogspot.com/
- Jason Tweed, Marketing Consultant – www.tweednet.com
- Stacey Zoern – Entrepreneur (Kenguru Car) http://www.kenguru.com
- AJ Brockman -Professional Artist – http://www.singlehandedstudio.com/commissions.html
- Lorinda Gonzalez -Editor and Writer – https://www.facebook.com/DistinctiveWriting
- Adam Wessman – Graphic Designer – www.vizstudio.se
- Diane Coleman – JD, MBA, President/CEO, Not Dead Yet – http://www.notdeadyet.org/category/blog-archive
- Nick Dupree -Advocate, Artist, Blogger – www.nickscrusade.org
- Jocelyn Woods – model, poet http://www.Facebook.com/ResurrectionofPassion
- Jean Marie Lawrence – Blogger -http://rollinginthefastlane.blogspot.com/
- Max McDonnell – Blogger – www.stubbornbugger.com
- Kristin Dellinger – Student, Blogger – www.wise-oldowl.tumblr.com
- John Turbo – Internet Radio Personalitywww.turborules.com
- Emily Munson – Attorney, Blogger – http://transitions.mda.org/profile/emily-munson
- Dominick Lawniczak Evans – Filmmaker – Human Rights Activist www.dominickevans.com
- Pratyush Nalam – Blogger – http://pratnala.wordpress.com
- Mark Plocharczyk – Designer – http://markploch.blogspot.com/
- Martin Sibley – BBC Broadcaster, Blogger – http://martynsibley.com/
- Ally Bruener – Comedian – www.ILaughedAtTheCrippledGirl.com
- Emily Jamar – Blogger – buildyourlifeforyou.tumblr.com
- Steve Catali – Blogger -http://steverocks85.blogspot.com/
- Emily Wolinsky – Blogger -www.smaisland.org
- John Kerr -Foundation Executive Director – www.johnkerrfoundation.org
- Jenny Gold – Filmmaker – www.CinemAbility.com
- Arelia Barker – Blogger – www.Shiksappeal.wordpress.com
- Melissa Milinovich – Global Asset Manager, Hewlett Packard and State Coordinator, Ms. Wheelchair Ohio – America http://mswheelchairohio-america.weebly.com/
- Toby Mildon, BBC, Project Manager
- Alice Wong – Staff Research Associate, Center for Personal Assistance Services, University of California, San Francisco. – https://twitter.com/SFdirewolf
- Mark Siegel – State Planning Director, Minnesota Department of Human Services – www.19thfloor.net
- T.K. Small, JD, Director of Policy & Outreach, Concepts of Independent Choices – http://www.coiny.org/
- Cory Jacobson – Full-time BA of Psychology student, and expectant mother
- Casey Gaines ILS (Independent Living Specialist) @ Resource Center for Independent Living, Graphic Designer/Owner of Cavel Design.
- Amanda Eads: Adjunct Professor at Texas A&M – Central Texas
- Denise DiNoto Speech-language pathologist, current Community Outreach Educator at Consumer Directed Choices, Inc. Also President of The College of St. Rose Alumni Association National Board of Director
- Michelle Szumski, MEd, CRC: VR/CRS Counselor for DARS
- Mary Kerr school district supervisor
- Margie Colson, Peer Mentor for Consumers using Consumer directed home care.
- Michael J. Wasser, attorney
- Monica Cross Morey – Retired Special Education Instructor, stay at home mom
- Mark Siegel Attorney
If you are over 18 and you have a form of muscular dystrophy, you can request membership here.