Greg Smith Keynote Speaker

Leadership Expert on Resiliency and Inner Strength – Greg helps leaders and teams “Go Full-Strength!” for maximum productivity.

(228) 424-3896

Inner Strength insights from the world of sports, disability, entertainment, business, politics and everything else I’d like to share with you.

Category Archives: General

How Hating Losing Helps

Look at Life’s Daily Challenges as Opportunities to Feel the Thrill of Victory

Kobe Bryant and Greg Smith discuss "inner strength" in a lockeroom after a game.

Talking to winners about winning is the best part of the access sportscasting has provided in my career.

By Greg Smith

“People just don’t understand how obsessed I am with winning.”  — Kobe Bryant

“I play to win, whether during practice or a real game. And I will not let anything get in the way of me and my competitive enthusiasm to win.”  Michael Jordan

“There may be people that have more talent than you, but there’s no excuse for anyone to work harder than you do.”  Derek Jeter

“Never die easy. Why run out of bounds and die easy? Make that linebacker pay. It carries into all facets of your life. It’s okay to lose, to die, but don’t die without trying, without giving it your best.”  Walter Payton


Eight years before my birth, my father was throwing touchdown passes at Alexander High School in Brookhaven, Mississippi and  then at Alcorn State University in Lorman, Mississippi. When I was a baby, he was coaching championship high school teams to record winning streaks and players to National Football League careers from Biloxi and Pascagoula, Mississippi.

There are genes for athleticism.  I inherited those genes. Because of that fact, I consider myself an athlete whose destiny was changed by other genes… the genes led to a body with muscular dystrophy.

I don’t believe there is a gene for competitive spirit.  I think that characteristic is teachable and learnable. I believe loving to win and hating to lose are the keys to success.

Every day, I face situations that I turn into “games” in my mind.  These are usually physical situations created by the weakness in my muscles.  Instead of lifting something with muscle, I need to be able to figure out a way to move it using leverage, balance and momentum.  When I encounter a situation like that, I interpret it as a challenge.  I analyze the situation and based on time constraints and my energy level, I will either decide to accept the challenge or get help.  If I accept the challenge, I am usually determined and relentless.  And I usually win.

When I win, I celebrate!  I bask in the spirit of victory.  I enjoy it to the point where I look for the next challenge to overcome so I can enjoy that tremendous feeling again! I invite you to try it.  Get into “game-time” mode the next time you face a difficult situation.  When you win, celebrate!

To learn more

Greg Football Uniform

Baseball’s “ADA Fan Cam” Offers Huge At-Bat for Disability Pop Culture


ADA WeekADA FAN CAM TV


By Greg Smith

Baseball TV Broadcasters to Acknowledge Fans with Disabilities on OUR day, the 25th Anniversary of the ADA!

“ADA Fan Cam” is a grassroots initiative to create awareness about the Americans with Disabilities Act’s 25th Anniversary. The goal: a mention of ADA during all Major League Baseball telecasts, with cameras including fans with disabilities and announcers acknowledging the day.

It is gaining momentum. The Arizona Diamondbacks are definitely participating, and hopefully, after one key phone call to Park Avenue, scheduled Monday, many more teams will follow along. I’m more excited about this than most of the work I’ve ever done, but you may wonder: Why is this important in the full scheme of things?

The answer goes beyond baseball and back to the early 1950s. My parents have shared with me their reflection on a day when televisions were “black & white,” but that phrase didn’t represent the people “inside” the box. When the first black people came on television, it was a big deal!

“Ma! Dad! Come see! There’s black people on TV!”

Families rushed to gather around the tiny, blurry picture in festive mode. It was a great thrill for them to see people who looked like them represented for the nation to see. Television became a major catalyst that paved the way to the explosion of African American culture’s current status as a vital part of pop culture.

Today, people with disabilities have little impact on pop culture. We have talented musicians, actors, artists, athletes, writers, dancers, but how many pop stars with disabilities can you name? How many who were not already stars before they acquired their disabilities? Others ascended to a “semi-star” status after public compassion over the “tragedy” of becoming disabled heralded them into the spotlight, but never to the level of “full stardom.”

In order for people with disabilities to develop the social confidence to reach our full potential and put our spin on pop culture, we need to be seen on television. That’s a prerequisite first step.

What does this have to do with baseball?

The “ADA Fan Cam” has the potential to serve as a sign that America is maturing socially. I have been watching baseball on TV my whole life and I have NEVER seen one television shot of a fan with a discernible disability. In the thousands of hours of camera shots of fans at ballgames I’ve watched, I haven’t seen one.

I’m sure most directors never thought about it. And I’m also sure that raising public awareness about social issues is not their job. Covering the game is. This is not a criticism of baseball or baseball broadcasters. This is the presentation of an opportunity to make a historical difference, respectfully submitted by equals whose opinion and input deserve to be heard, respected and considered.

This week, we celebrate the 25th Anniversary of the ADA and the civil rights that law has given us. And yes, we should party hard. But we need to realize there is no building code in the language that forces the removal of attitudinal barriers, stigmas, devaluing prejudices and antiquated beliefs about people who happen to have disabilities.

Are we not shown on TV because we’re too repulsive? Ugly? Deformed? Misshapen? Depressing to non-disabled viewers? Would we make people grab their remotes and turn the station? Before remotes, I’m sure some people got up from their “Lazy Boys” to turn when a black face came on television. But we’ve moved on.

The “ADA Fan Cam” concept would not fit any other sport or any other televised public gathering. But it fits baseball like a catcher’s mitt. Baseball is “America’s Favorite Pastime.” It is a four-hour gathering of the common man, where everyone is in their summer clothes, eating hot dogs, cotton candy, peanuts and Cracker Jacks while rooting for the home team. The pace of the game is slow enough for television to do a masterful job of capturing the universal experience of being there. In each broadcast, leading into innings and during stoppages in play, dozens of fans are shown in seemingly random cutaways and close ups. But never us.

If television can accept and honor Caitlyn Jenner, proudly display a rainbow colored White House (reported by openly gay news anchors and reporters) and gather at the steps of a state capitol, focusing the eyes of the world on the lowering of a flag of injustice, surely it can listen to the voices of it’s largest minority group for one day. Surely it can show us in our Sunday best as we celebrate OUR day.

The community of people with disabilities is extremely happy about the accomplishments of the LGBT community, the African American community, the Hispanic, Asian, Native American… all our communities. Because we are you. We are among all communities. And you are a part of our community because at any moment, you could be welcomed into our midst.

We are following you in the batting order. A successful “ADA Fan Cam” on July 26th would be a solid base hit. If all teams participate, it will be a towering home run! So please root for OUR team and look for us between innings as you enjoy a Sunday afternoon watching baseball on TV.

Visit the ADA Fan Cam Facebook Page: www.Facebook.com/ADAFanCam

NOTE: People in wheelchairs are a very small fraction of the people whose civil rights are protected under the Americans with Disabilities Act.  To learn more about invisible disabilities, visit http://invisibledisabilities.org/

Disability Emoji ready for World Emoji Day and ADA 25th Anniversary

World Emoji Day is July 17 and ADA 25th Anniversary is July 26! #ADA25

Contacts:

Greg Smith 228-424-3896, greg@TheStrengthCoach.com
Katrina Parrott (iDiversicons) 832-654-7641, katrina@iDiversicons.com

FOR IMMEDIATE RELEASE: JULY 14, 2015

Ocean Springs, MS – Disability Advocate/Broadcaster Greg Smith, has partnered withiDiversicons, the world’s first diverse emoji keyboard, to introduce new “Disability Pride Emoji” in celebration of the 25th Anniversary of the Americans with Disabilities Act, July 26, 2015. iDiversicons is adding 14 disability emoji to it’s existing line of diverse images that offer a new seamless iPhone and iPad keyboard with unlimited capabilities and user benefits. The release of the new disability em also coincides with World Emoji Day, July 17.

“Disability Emoji express disability pride at a time when we are celebrating the 25th anniversary of our civil rights,” says Smith. “The concept of disability today refers less to medical conditions and more to a lifestyle, shared by millions of people who are fully engaged in the mainstream of community life.  And that includes on-line and wireless community life!”


Smith is the founder of the syndicated radio show On A Roll – Talk Radio on Life & Disability. He is the subject of the PBS award winning documentaryOn A Roll: Family, Disability and the American Dream.  As a professional speaker, he is known as “The Strength Coach.” www.TheStrengthCoach.com.

As a pioneer for diversity and inclusion, iDiversicons’ revolutionary new iPhone and iPad keyboard features truly diverse emoji, satisfying a void that current emoji lack and what the public, media and world has been asking for: “more faces of color and diversity.” There are over 900 iDiversicons to choose from, including an unmatched five different skin tones.

 

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The iDiversicons’ keyboard is fluid, seamless and very easy to use. All diverse emoji are contained in the keyboard like a font. Emoji can instantly be made larger for easier viewing and selection purposes. There is no limitation in the number of iDiversicons you can select and send at one time.

iDiversicons’ emoji encompass various races, biracial and gender equality, religion, animals, holidays, sports, mascots, fraternities, sororities and now, disabilities. Because one face definitely does not fit all.

This first batch of Disability Pride Emoji is just the beginning of what will become hundreds of images when the funding becomes available.

To order from the iTunes store, go to http://bitly.com/DisEmoji
To order the GoogleAps version, go to http://bitly.com/DisEmojiGoogle

Help make the next documentary!

The documentary “On A Roll: Family, Disability and the American Dream” aired on PBS in 2005, reaching over a million Americans in the week it debuted. The film won the “Audience Award” as the top documentary on the PBS Series “Independent Lens.”  Your support can make the sequel documentary possible.

Joanne Caputo’s film shared two compelling stories: First, it shared the story of how one man navigated the complex integration of disability, ethnicity, ambition, and family life. The film covered my journey from birth with muscular dystrophy, through high school, college, married life, fatherhood and the pursuit of my career ambitions as a disability leader and broadcaster. Secondly, it covered the rich culture of America’s disability community as it celebrated the 10-year Anniversary of the Americans with Disabilities Act.

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The young, energetic subject of that film, who traveled solo, is now 51 years old. My young children you saw are now grown. I have gradualy lost abilities once taken for granted, such as sitting upright in my wheelchair without support, transfering in and out of my chair and using the bathroom independently.

Muscular dystrophy and aging have taken a severe toll on my physicial abilities. But I still drive my van, travel frequently to speaking engagements and host my weekly podcast.

“On A Roll Again” will focus on the complex challenges one man faces as he ages with a severe disability. Who will provide his needed personal assistant care? The parents we met in the first film are now in their mid 70′s. Where will he live?

“On A Roll Again” will also focus on the status of life with a disability as we approach 2020, the 30 year Anniversary of ADA. How has American’s attitude about people with disabilities shifted? How have developments in technology and medical care impacted disability lifestyles?

This is a film that must be made. We need your donation to raise the funds to make it possible. Thanks for watching “On A Roll” and I look forward to seeing your name in the credits and inviting you to the screening party of the new film.

Thanks for making a contribution!

Screening of PBS Documentary “On A Roll: Family, Disability & the American Dream” Starts Now!

PBS page banner

PBS site for documentary On A Roll: Family, Disability and the American Dream: www.PBS.org/onaroll

Watch online now at www.onarollmovie.com

We’ve come a long way since 1990. We’ve also come a long way since 2000. That year, the disability community, led by the American Association of People with Disabilities (AAPD) planned a 24-city, cross-country relay that celebrated the 10-year anniversary of ADA.

That relay and the events of July 26, 2000 are a major part of the award winning PBS documentary film, “On A Roll: Family, Disability and the American Dream.”  It is a nostalgic look back at the disability community’s biggest celebration to date.

The film was made by Joanne Caputo, who learned of my work as host of “On A Roll Radio” as a result of the friendship our young sons developed in Yellow Springs, OH. It started with her bringing her camcorder to our house.

From now, throughout the month of July, “On A Roll” is available free at www.onarollmovie.com. Please enjoy and spread the word about it. When it aired on PBS, 1.2 million people saw the initial broadcast. Hopefully, we can reach as many people this month as we celebrate the 25th Anniversary of the ADA.

Star Studded Cast!

Here are most of the people with cameos in the film, in order of appearance:

Berkeley Smith
Donovan Smith
Greg A. Smith, Jr.
Rev. Jesse Jackson
Mike Ervin
Christopher Reeve
Dr. JR Harding
Becky Ogle
Judy Heumann
Bob Kafka
Jim Smith
Adelia Smith
Jackie Cammon
Tonya Tetteh
Wesley Gaffney
Kevin Gaffney
Eric Gaffney
Todd Richardson
“Duke”
Ron Pope
Jane Criddell
Ron Pope
Jeannie Morris
Angie Jacobs
Michelle Carston
Dr. Mitch Tepper
Terri Nealy
Eleanor Smith
Dominique Wilkins
Masha Malikina
Bobby Coward
Juliette Rizzo
Andy Imparato
Justin Dart
Ann Marie Hughey
Kyle Glozier
Senator Tom Harkin
Vice President Al Gore
Paul Spooner
Ted Kennedy Jr.
Senator Edward Kennedy
President Bill Clinton
Yoshiko Dart
Hillary Clinton
Rep. Jan Schakowsky
Steve Drosdow
Joyce Preston Scott
Gilda Dennis
Kate Adamson

Get your popcorn ready! I hope you enjoy one of the greatest disability documentaries ever made.

How 2.7 Million Households Will Gain ADA Knowledge Through MLB “Fan Cam!”

11329836_380533208808281_4667110692483504637_nYour chance to hit a home run for people with disabilities: www.Facebook.com/ADAFanCam

By Greg Smith

If you are a baseball fan, surely you have experienced watching the “Fan Cam” during the Major League Baseball television broadcasts. Between innings, the television camera focuses on regular people enjoying their time at the ballpark.

It opens showing a young couple on a date, unaware of their five seconds of fame. Then it cuts to two little girls playing patty cake. Then a woman leaning back on her elbows in the bleachers. Then a baby sleeping. Then  a hairy chested old man wearing a baseball cap and a tank top. And finally, we are left with a family featuring mommy, daddy, son and daughter. And that’s it. A slice of Americana. On to the bottom of the inning.

But here’s something you may never have considered.  I think it is a correctable problem: I’ve been watching baseball games on television for 50 years and I have NEVER seen a shot of fans in the wheelchair section! Have you? Go ahead. Think about it. Can’t remember one, can you? Even one.

We are fans too!

I’m planning to put a stop to the unintentional black balling of the disabled Major League Baseball fan on the most appropriate day to do so: July 26, 2015. On that date, every Major League television broadcast will acknowledge the 25 year anniversary of the Americans with Disabilities Act. And every broadcast will focus the “Fan Cam” on us!  That’s the goal.  It is a real possibility that is gaining momentum and you can help.

On June 3, I created a Facebook page called “ADAFanCam” and I invited people with disabilities to post pictures of themselves at the ballparks. Within three hours, I had dozens of pictures of very happy disabled folks experiencing the magical enchantment of baseball. Within 1 day, the page had over 100 likes. Those aren’t monster numbers but those are a result of my skinny fingers alone in one day clicking “Share” “like,” “tag,” and “retweet.”

I called my old sportscasting colleagues which led to a Facebook chat with the Arizona Diamondbacks’ VP of Broadcasting, Scott Geyer.

“Dear Scott:
In a lifetime of watching baseball, I have never seen one “Fan Cam” shot of the wheelchair section. Not one. July 26 is the 25th Anniversary of the Americans with Disabilities Act. My objective is to get each of the 26 MLB television broadcasts to show fans with disabilities on that date during the 7th inning stretch (or anytime during the game), and say something about it being ADA Day.  If you could help steer me in the right direction to see this become a reality, it would be most appreciated. It is free, simple and delivers a ton of good-will that will be appreciated by millions of people.

His immediate, instantaneous response:

“Hi Greg
Your passion for this project is contagious. I will get this in the dialogue as soon as I can. I’ll be back in touch. In the meantime please email me so I can perhaps move the message around my circle easier. Thanks for your strength!”

Swing. Pop. Stare. Flip Bat. Slowly trot.  Home Run!

This can be a historic home run for disability culture. If we pull this off, here is the potential fallout:

1. Viewers in over 2.7 million households will see happy disabled people and learn from announcers about ADA day. Here’s a chart from Forbes Magazine showing MLB regional network audience sizes!

mlbtvratingsprimetimeexpand1

2. We can leverage “spin-off” media opportunities to change attitudes. Success in this campaign will result in other opportunities to shed light on the marginalization of America’s largest minority. We can discuss WHY we’ve never been on the “Fan Cam” or most every other positive stage in our society. Those media opportunities will exist in global, national and local media as a mass appeal hook for ADA25 coverage. Baseball is not the only element that excludes us. But it can give us the forum to educate all.

Last night, while thinking about the impact this project can have and looking at the pictures, I got emotional when I started to internalize the burden of irrelevance we carry as people with disabilities.  Despite our incredible inner strength, there is pain in society’s message to us that there’s something “wrong” with us.  Or that we’re not worthy of being hired, or promoted or capable of love and intimacy.  We have no reflection in the mirror of our society.  It is an incredibly lonely feeling that we force ourselves to ignore but we know it is there.  But when you look at the pictures of all these people enjoying the magical enchantment of baseball, see if your eyes tear up like mine did.

This can’t happen without your support.  There is no money changing hands.  My only motivation is to see the message get out.  We need your help.  “Like” and keep checking www.Facebook.com/ADAFanCam to learn how you can help.  Share this article and share the page.  And most importantly, find some pictures of yourself at the ballpark and post them to the page.

And always remember this: “If you build it, they will come.”

Disability Emoji are Here!

 Why I’m all “emoji” about it and why you should be too!

emojisample

By Greg Smith

I’m excited to announce that I’ve partnered with iDiversicons, the world’s first diverse emoji keyboard, to introduce new “Disability Pride Emoji” in celebration of the 25th Anniversary of the Americans with Disabilities Act. iDiversicons is adding 14 disability emoji to it’s existing line of diverse images that offer a new seamless iPhone and iPad keyboard.

The cost of the app is $1.99.  If these 14 emoji demonstrate a market demand, hundreds of other disability figures will be created and added to the upgrades, covering the full range of disability diversity.  If your disability isn’t represented yet, fear not, and purchase the ap anyway to show your support.

Why does this matter?

Disability Pride Emoji give people with disabilities the opportunity express ourselves as we celebrate our civil rights.  The concept of disability today refers to a lifestyle, shared by millions of people who are fully engaged in community life. And that includes on-line and wireless community life!  If everybody else is expressing themselves with emoji that look like them, so should people with disabilities!

For too long, we’ve been left out of the mainstream mirror of society.  We never see the “fan cam” on the wheelchair section at ballgames.  We never see stars with disabilities saving the day, in slow-motion, rolling away from the explosion in the background.  But thanks to iDiversicons, we are on the cutting edge of a growing trend.

iDiversicons is the brainchild of Katrina Parrott, a former NASA employee who got the idea from her daughter Katy, who expressed a desire to send her friends emoji that looked like her.  So iDiversicons’ emoji encompass various races, biracial and gender equality, religion, animals, holidays, sports, mascots, fraternities, sororities and now, disabilities. As a pioneer for diversity and inclusion, iDiversicons’ revolutionary new iPhone and iPad keyboard features truly diverse emoji, satisfying a void that current emoji lack and what the public has been asking for: “more faces of color and diversity.” There are over 900 iDiversicons to choose from, including an unmatched five different skin tones.

Emoji are on the rise!

Emoji are rising fast in popularity.  Here’s a graphic that represents their usage since the were introduced on Apple’s iOS in 2011.

percent_by_time

The iDiversicons’ keyboard is fluid, seamless and very easy to use. All diverse emoji are contained in the keyboard like a font. Emoji can instantly be made larger for easier viewing and selection purposes. There is no limitation in the number of iDiversicons you can select and send at one time. This first batch of Disability Pride Emoji is just the beginning of what will become hundreds of images when the funding becomes available.

We’re interested in your ideas for images too.  Download the latest version of iDiversicons as a vote for inclusion of people with disabilities in a rising form of expression.

What additional emoji would you like to see added?  Post in the comments section below and we will make it happen in the next version!

Hear my interview with iDiversicons.com founder Katrina Parrott on “Timeout with the Strength Coach,” my weekly podcast.

“Aim High in Steering.”

driving

By Greg Smith

When I was a 16-year-old driver’s education student, my teacher repeated those words over and over. Young drivers tend to focus on very short distances in front of them and continually make steering adjustments to keep the vehicle within the lines.

The result is the vehicle jerks back and forth. And for the driver, the experience is stressful because of the constant life/death decisions made with each slight turn of the wheel.

Instead, as you know if you drive, you should focus your attention much father down the road. If you do that, you’ll learn to trust that the vehicle will get you there in a straight line.

At the age of 16, I was devastated to learn that because of muscular dystrophy and my weakened arms, I would not be able to drive a normal vehicle. But all hope was not lost. I learned of a technology called “zero effort steering” which helped people with reduced strength turn the wheel with much less force. It was technology that was developed for astronauts to use on the lunar rover and was applied to the real world to change the lives of people with disabilities on this planet.

In 1987, I got my first set of wheels, a Dodge Ram mini-van and I’ve been driving with zero effort steering ever since! Four vans later, I’m still free to go wherever I want.

I can still drive skillfully, but because of muscular dystrophy, my body has become a lot weaker over the years. In situations where I have to turn the wheel around and around, such as making a 3-point turn or in tight parking garages, it tires me out.

I have always accepted that there would come a day when I would no longer be able to drive. I have “known” that day was coming and dreaded the loss of freedom that would result.

As fate would have it, I wasn’t aiming high enough in steering! The technology has advanced to the point where the simple movement of a joystick can operate a vehicle with precision. I now know that day of losing my freedom will never happen because I’ll always be able to move the joystick.

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This week, Jim Kennedy from Atlanta’s Shepherd Center came to visit me to evaluate me for new driving technology. I learned that driving a vehicle with a joystick is nothing like driving a power wheelchair. Press the joystick forward and hear the engine rev. Pull backwards to apply the brakes. Move your wrist an inch to the right and watch the steering wheel quickly whip around and around to the right.

Sounds simple right? When I get used to it, it will be. But I took the van up and down my neighborhood street about 20 times and still wasn’t comfortable taking it out on the main road.

But Jim encouraged me. I pulled up to the intersection. Looked both ways. Moved my joystick to the right and slightly forward… ever so slightly. And suddenly, I found myself in panic mode on Government Street in Ocean Springs, Mississippi! It is a very narrow curving road with lots of traffic and has no shoulder. You have to “thread the needle” to keep the vehicle in the safe spot between having a head on collision and rolling the van in the gutter. And then I heard the voice of my high school driver’s ed teacher.

“Aim high in steering.” It calmed me down and it worked.

The next day, I was whipping the “green monster” all around Ocean Springs until I reached a sharp turn on Government, misjudged it slightly and ran on the “drunk alarm” ridges on the side of the road. The sound was loud and I was scared, but I remained calm and in control. I didn’t overcompensate and in a mater of seconds, I was back in command.

“That scared me.”

“Not me, said Jim.”

“Why not?”

“Because you didn’t jerk the wheel,” he said. “I’ve flipped upside down because…”

“Don’t talk about that sh*t!” I yelled quite seriously! Jim chuckled.

Aim High in Steering

It is a phrase that it applies to my goals and dreams just like it applies to keeping the car on the road. Look far into the future and see yourself where you want to be. Keep your eye on your destination and trust that your vehicle will keep you on the straight and narrow road to success.

Hear my interview with Jim Kennedy from Atlanta’s Shepherd Center this week on “Timeout with the Strength Coach.” The show will be available Sunday night/Monday morning at 12am Eastern Time, 11pm Central time. 

Guest Blog: From Poster Child to President

Shut-down of MDA Telethon inspires former ‘poster child’ to reflect and share vision

By Emily Wolinsky

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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.

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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.

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Jeff Hoffman – Founder of “Living with MD” Facebook Group

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.

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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.

A Front Row View Changes Everything!

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By Greg Smith

Saturday night, while attending the Mississippi Gulf Coast Symphony Orchestra concert at the Saenger Theatre in downtown Biloxi, I remembered a lesson I learned from listening to my own show. It was a lesson taught by Marilyn Sherman on my second-ever podcast. (Episode 19)

My parents were invited by Randy and Denise Doyle.  Denise serves on the board of directors for the Symphony.  Your’s truly, the undatable one, was the 5th wheel. We enjoyed a fabulous dinner at Mary Mahoney’s restaurant and we were so engaged in conversation and laughter that we lost track of the time. We had to rush, but we made it just as the maestro was saying his first words. Of course I was escorted to “wheelchair row” which is at the very back of the theatre, farthest away from the stage.

The music was familiar and soothing: Rossini’s The Barber of Seville.  But from so far back in the theatre, I had to squint to get any focused view of the orchestra.  I found myself reclining back in my chair,  closing my eyes and enjoying the music.  I became a little drowsy.

During the intermission, I made my decision.  “After everyone is seated and out of the aisle, I’m gonna roll up and sit in the front row!”

I asked Denise for permission.  She was intrigued by the question and went to get an answer from somebody else.  But my mind was made up. “Nobody is going to interrupt the performance of the orchestra to walk down the aisle and  make me move away,” I thought.  After everyone was seated, and before the performance began, I made my move.

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The first two rows were empty.  I made sure my presence was not blocking anyone’s view.  When I arrived up front, the bassist and a couple of cello players looked at me, smiled and nodded.

I was rewarded for my courage immediately by the selection the orchestra played!  It was Mussorgsky’s Pictures at an Exhibition which is a piece we played in high school!  I knew this music well!

For the next 30 minutes, I was deeply engaged. I could see the fingers of the musicians moving up and down their instruments, plucking at the strings.  I could see their facial expressions as the music flowed through their souls.

I’ve seen Miles Davis from 30 feet away.  I’ve seen Stevie Wonder, The Who, Journey, Neo, Genesis, the Pretenders, John Legend, Carlos Santana… I don’t want to take the time to list them all right now.  This performance by the Mississippi Gulf Coast Symphony Orchestra was one of the most enjoyable concerts I’ve ever attended. Moving up to the front row in life definitely changes everything. Don’t settle for what you are initially given in life.  Always strive to get a better view!  Thanks Marilyn!!