Greg Smith Keynote Speaker

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

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

Category Archives: Disability

Guest blog: Life lessons from 24-year-old Cory Jacobson

Cory Jacobson has spinal muscular atrophy, a form of muscular dystrophy. She is mom to 15-month-old Kinley, and wife to Ian Jacobson.

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By Cory Jacobson

The question “What has SMA taught me?” was recently asked in a support group I am a member of. It really got me thinking so I thought I’d write out my answer. SMA has taught me a lot throughout my 24 years of life.

Doctors are “practicing”

I’ve learned that doctors are most certainly NOT always right. They have said things to me that have downright made me cry. For example, an OB doctor told my husband and I that he would need to be prepared to be a single father to our then unborn child because I was going to die during her birth. Clearly THAT didn’t happen.)

They will give out life expectancies to the already-traumatized parents when their babies are diagnosed. They are typically very wrong. They will act (and sometimes even directly state) that they are smarter than you and therefore know everything about you.

But, then you get some doctors who dedicate their lives to saving the lives of their patients. Ones who give out their personal cell phone numbers just in case you need them. Ones who learn things about you. Ones who take time to care for you in the very best way. Ones who admit they aren’t sure about something but will do research to learn more. THOSE are the good ones. Always be grateful for them.

Pushy parents are fantastic

My parents ALWAYS pushed me to try everything I possibly could. I wasn’t allowed to quit. I learned that I am capable of anything. If I have to do it differently, so what? Having SMA has taught me to appreciate the attitude my parents have instilled in me my entire life.

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Attitude is EVERYTHING

If you think you can’t do something, you aren’t gonna be able to. But, if you set your mind to something, you can do it. I’ve had so many people tell me that things were impossible for me to do, but I did them anyways. Call it stubbornness but I don’t take no for an answer. I have accomplished a lot in my life that I’m very proud of (graduating college, skiing, traveling, getting married, having a child, working, giving speeches) and having SMA has given me a “no quit” attitude.

Confidence is King

At first, confidence was not something that came naturally to me. But, eventually, I came to the realization that if you don’t believe in yourself, why should anyone else? I had to learn to believe that, even though I’m different, I’m still smart, beautiful, funny, and worthy of the same things that everyone else is. This newfound sense of confidence afforded me the opportunity to experience so many wonderful things: an education, a loving and supportive (and sexy!) husband, a beautiful daughter, and so much more. I had to find confidence in myself before I could be independent.

Having SMA means that sometimes, things will really suck. It means that everyday things will be challenging. It means that I will have to be creative in nearly every aspect of my life. It means that many people will treat me differently. And when I say differently, I mean they will stare, ask stupid questions, discriminate, and the like. But, it means that I will be STRONGER for having overcome those daily challenges, and for trying to educate those people who treat me differently. It means I will be smarter and more creative for having to figure out innovative ways to overcome obstacles and adversity.

I’ve learned many things from having SMA, but this is just a little glimpse. SMA is not who I am, but it’s very much a part of me. I’ve learned to EMBRACE it and THAT is what SMA has really taught me; you’re given this life because you are strong enough to live it.

Goodbye, Mr. “M”

Greg Smith and "Mr. M"  Bill Meulhauser

“Mr. M” came to hear me speak in Phoenix, November 2, 2013.

by Greg Smith

Last week, I learned of the passing of a man who was instrumental in my development as a youth.  For 34 years as a special education teacher at Downers Grove South High School in suburban Chicago, this man played the same role in hundreds of lives.

Remembering “Mr. M,” Bill Muelhauser, brings back fond appreciative thoughts about my introduction to the disability community.  I had just become a wheelchair user after back surgery and beginning high school.    I thought you might enjoy these memories about  “Mr. M” and the impact he had on me:

Reflections on the environment Mr. M created for special ed students at Downers Grove South

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When my “short bus” arrived at South High School, it pulled right up to the front of the building. Sometimes we arrived at the exact same time as two or three other “short buses” so we jockeyed for position to unload under the covered shelter of the awning in front of the school.

After getting off the bus, I propelled the manual chair by putting my right foot over my left foot. After about 20 repetitions of this motion on the slick tile floor inside Downers South’s main lobby, I moved down the hall to the right and entered the starting point of my day for the next four years, the “crip room.”  That’s what we called the special education classroom.

Actually, there were two “crip rooms.” The main room was about the size of three standard classrooms, but still nowhere near big enough for the 30 or so disabled kids. Many of us were in wheelchairs and many lacked speed or agility, or the ability to perceive depth and space enough to know that they were always causing traffic jams. I learned quickly that if I wanted to be on time for a class, I had to plan my route so I that wouldn’t get stuck in the middle.

The “crip room” featured a complete kitchen with oven, dishwasher sink and refrigerator to teach the kids independent living skills. Bill Muelhauser ran it, but I didn’t learn his real last name until weeks after the start of school because he introduced himself to us at orientation as “Mr. M.” Tall, with a big mustache and a friendly laugh, he was a comforting part of my accepting that I would be attending South instead of the school my neighborhood kids attended, Downers Grove North.

Mr. M was the captain of “the crip ship.” Looking back, I’d say it was quite impressive to consider that Mr. M and his staff took on the responsibility of receiving kids with disabilities from all over the western suburbs and giving them the most integrated a school setting possible.

In addition to managing the special education department, he taught classes to special needs kids and supervised his staff. Mrs. Bretl, AKA “Mrs. B,” and Miss Brown were the other two teachers in the special ed class. There were four paid staff assistants as well as several students who worked as volunteers.

The “crip room” was a place where those of us who were integrated in mainstream classrooms could get the physical help we needed, like removing jackets, gathering books for our next class, or getting some assistance with using the bathroom. We all had lockers for our coats, but unlike the non-disabled students, we kept our books in little plastic shelves with our names on them, for easy access.

The “crip room” was like a headquarters for the disabled students. We could eat lunch there if we wanted to, but as a freshman, I would shudder to think of doing such a thing! I ate my lunches in the main cafeteria, determined to fit in and be as “normal” as possible.

Soon, the daily routine developed. “Mr. M,” Miss Brown, or “Mrs. B” – simple names for the kids with cognitive disabilities to learn and remember – or one of the staff or student assistants helped me remove my coat. I then wheeled myself over to my chest level, orange plastic shelf to get the books for my first class and place them next to me in my chair. Then I was out of there.

As the year progressed, I started to enjoy beginning my days in the “crip room.” As I removed my coat and assembled my materials for class, I engaged in Monday-morning quarterbacking with kids who had severe cognitive disabilities but who knew sports statistics like computers. We would more often than not be discussing a bonehead decision by Bears quarterback, Bob Avelini the day before, or a beautiful Walter Payton dash from scrimmage. This was a very opinionated group of sports fans!

I remember a class vacation we took to Clearwater, Florida and Disney World.  In Clearwater, Mr. M did an awesome thing for me.  I was flirting with a high-school-aged waitress at our diner.  She gave me her number and we agreed to meet later that evening, but the class had other activities planned.  Mr. M was cool enough to allow me to skip the plans and have dinner with her.  Without her knowledge, he chaperoned from a table across the room!

Through “Mr. M’s” leadership, high school was an incredible introduction to some of what would become defining elements of my life. The “crip room” was a new introduction to disability; a familiarity with the diversity and goodness of people, and an understanding that my cognitive abilities made me no better a human being than those who were both mentally and physically disabled.

That year was also one of reward for initiative. I expressed a desire to become involved in marching band and radio, and both of those doors opened to me. Those three experiences, profound foundations of who I would become in life, share the same roots, 1978-1982, my time at Downers Grove South High School.

These are just one student’s reflections.  Hundreds of similar stories could be told about the incredible work Bill Muelhauser did in his career.  Goodbye, “Mr. M.”  You were a great man, appreciated and loved by many.

A memorial visitation will be Saturday October 11, 2014 from 10am until time of services 11:30am at Toon Funeral Home 4920 Main Street Downers Grove IL.

Chad Hymas Video Inspires “Operation Rise & Shine”

Operation Rise & Shine Logo

Gaining Strength from a “Roll Model,” Chad Hymas

by Greg Smith

Getting in and out of bed is something most people take for granted. Due to muscular dystrophy, I have slowly been losing the ability to do this independently. I’m not prepared to live with the lifestyle restrictions caused by the rigid scheduling of assistants to get me in bed. So I’ve established “Operation Rise and Shine: One Man’s Quest to Go to Bed and Get Up Whenever!”

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Inspirational Speaker Chad Hymas

“Operation Rise and Shine” is constantly fueled by the inner strength, determination, and relentlessness that is built into my psyche. But finding even more motivation to persevere is something I always strive to do. I was extremely inspired by a video posted by my National Speakers Association colleague Chad Hymas. As C-4 quadriplegic, Chad travels the world alone as an inspirational speaker and gets undressed and dressed daily by himself. It took him 2 1/2 years to learn the entire process. In this video, he shares his process and reveals the potential of focused, relentless determination.

If you watch the whole video, please go ahead and admit it in the “comments” section below.  Were you inspired?

My “Operation Rise & Shine” has taken major strides forward over the past few days. Saturday, a new mattress was delivered to the house. This mattress is firm enough to support my body without my weight pushing me down into a hole. This allows me to much more easily turn from side to side. Adding silk sheets makes the process a lot easier too. In addition, the new mattress is about 3 inches lower to the ground than the previous one which makes transferring easier.

The next phase of the Operation is to make the process easier. Now, I am able to make the transfer from bed to wheelchair and vice versa, but is it is extremely difficult. I will be working with my occupational therapist, Danielle Johnson, to come up with little tricks that eliminate the grueling maneuvers. I look forward to sharing our progress as we try to shave the time for transfers down from 20 minutes to under one minute.

Stay tuned for more updates and video proof of the success of “Operation Rise & Shine.”  And a special ‘thank you’ to my speaker colleague, Chad Hymas.

 

Operation Rise & Shine!

One Man’s Quest to Go to Bed and Get Up Whenever!

Based on your amazing response (record-setting blog numbers) to my article yesterday about my quest to rise and shine independently, I thought I would give you an update today. The news is not good, however I persevere.

In case you missed it, I am a 50 year old man with muscular dystrophy (really!), who is finding it next to impossible to independently transfer from my wheelchair to bed and vice-versa without assistance.  This is putting a cramp on my lifestyle and this difficulty must stop.  I need to figure out a way to maintain that freedom.

Part of the problem is the bedding. A few months ago, we decided to turn the mattress over, because I found myself sinking into a whole when sleeping, making it impossible to turn over. But after flipping the mattress, I noticed that the elevation of the bed was a little higher and that made it more difficult to get in bed. It was decided that we needed to buy a new one.

Determination will have to wait a while

The new mattress was delivered yesterday. It is one of those combination mattresses that features both the springs and the foam. As soon as it was delivered and placed onto the box spring, I could tell that it was even higher. I immediately had them remove the box spring and then it was obviously too low.

So my quest is on-hold until I find a mattress that is not too high, not too low, not too hard, not too soft, but juuuuusssst right!

Also, my mom went to Walmart last night to buy me some satin sheets. The thinking is I’d be able to slide across the bed easier to turn over on slick sheets. When she got home, gave me a funny look and said “These were the only ones they had.”

Greg holding up leopard skin sheets!

“Mom, you should have got me the ‘Pink” pajamas while you were at it!”

Greg kissing his leopard skin sheets

Stay tuned for the next episode of “Operation Rise & Shine!”

 

Losing and Still Winning!

I now have enough doctors

            to form an offensive line.

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By Greg Smith

I’m protected by all-stars.  At left tackle is my primary care physician. The left guard is my optometrist. My center is my cardiologist. My right guard is my pulmonologist, and my right tackle is my gastroenterologist.

It is a winning team. With their protection, I have plenty of time “in the pocket.”

It is no secret that one of my strengths is the ability to find pleasure when I accomplish difficult obstacles and emerge victorious. I always say that we get stronger by lifting the weights of life’s challenges. If I indeed ultimately profit from misfortune, I’m going to be rich. I’m facing cataract surgery, an esophageal scope and (I’m now 50), a colonoscopy all in the next month!

It’s all good to me. I’m brave with the knowledge that after it all, I will be even stronger! I’ll be able to see better without needing glasses anymore! I’ll be able to swallow easier and nourish my body better. And I will learn (God willing) that I am cancer free!

Lost a few teammates

As you may know, my sons and daughter have moved 1500 miles away and relocated in Arizona. I am proud of their independence and very happy for them. That’s the most important thing. I am confident that they will do well and be successful.

But from my perspective, I have three less sets of arms and legs to help me function. As a result of their absence, I need to be more independent.

Muscular Dystrophy is a disease that gradually weakens the muscles in your body. It is the opposing defensive line, trying to “sack” me.  It doesn’t do it with speed.  It thrives on sheer power… gradual pressure.

The gradual change is so slow that you barely notice it. But when the moment arrives where you can no longer do something that you used to be able to do it can be quite shock. 30 years ago, I could walk from my bed to the bathroom sink. 20 years ago, I could stand up in front of the sink and brush my teeth. Now I have to lean my elbows on the sink to support my body. 10 years ago I could independently transfer from my wheelchair to the toilet. Those days are long gone.

Not yet ready to call it a night

Two years ago, I could, with some difficulty, transfer from my wheelchair to my bed and vice versa. About a year ago, I got sick and spent weeks in bed. Extended periods in bed drain your strength and force you to ask for help. Instead of transferring independently, I needed help getting in and out of my wheelchair daily.

As I recovered, I found the struggle of climbing into and out of the wheelchair to be unappealing, so I started asking for help most of the time. At first, I knew that I was being lazy and could do it myself, but as time progressed, I started to realize that getting in and out of the chair was no longer a sure thing. It got to the point where I would only take on the challenge if nobody was around.

And then one evening, several months ago, I started to question whether or not I COULD make the transfer. Imagine laying in your bed and thinking to yourself, “I wonder if I can get up from here?”

That night I tried but after about a 30 minute exhaustive effort, I could not do it. I tried every possible strategic use of leverage, momentum and strength but I could not overcome the force of gravity. I realized that night that I was truly bedridden.

For a while I accepted it. Having the kids around to help me at all hours of the night made my lifestyle relatively unchanged. I could call Greg Jr. at 2 AM to put me in bed. But now that they are gone, my parents have to do it, and they like to go to bed early.

I believe in all of that “early to bed early to rise” stuff, but on the other hand, the silence of the evening offers me a great opportunity to strategize, write, and record my material which helps people build their inner strength. Sometimes I feel like I just need to be up at the computer typing or recording, but I am unable to because I have to take the help getting in bed when it’s offered.

Enough is enough!

I have decided that I am not going to give up without a fight. I’m going to hit the “weight room.” I have obtained the services of an occupational therapist, and I am determined to try to help myself more in order to maintain my freedom.

I am happy to tell you today that this morning I was able to get myself in the chair. It was agonizing. It was time-consuming (took about 20 minutes). It was physically draining and by the time I was in the chair I was exhausted. But I made it into the chair! That is the victory. That is what has energized me and given me the drive to have a very productive day.

Now that the kids are raised, it is time for me to move on to the next opponent on my schedule, moving out of my parents home and into a new life of independence. That’s the sport I play. I have a must-win attitude. Building inner strength for victory in the game of life is what I help others do. Its time for me to get back into game shape and do what I’ve been telling others to do.

Welcome to the game I play.  I hope you enjoy the battle. Consider this blog your online source for updates.  Bring me in to speak to your group to see the action live from your luxury skybox seats!  It’s gonna be a helluva ballgame.

Here’s video of an independent transfer from over three years ago.  It is much more difficult now.

 

Disabled Can Be Givers Too!

Greg Arms Up

By Greg Smith

There is a perception in our society that having a severe disability is a fate worse than death. But I can think of many scenarios in life that would seem worse than my life with MD:

Living in extreme poverty, being hungry, being illiterate, being without a family, living in a loveless family, living in a household where there is domestic violence, having a terminal medical diagnosis like cancer, being incarcerated, being addicted to drugs or alcohol… I have respect and admiration for people in all of those categories, yet I would not trade places with them.

Heck, I’d rather have muscular dystrophy than be just plain ugly or stupid! My muscular disease is more of a pain in the butt that it is a suffering.

I’m just being real, with you but our culture continues to insist on placing us with disabilities in a ghetto of the least fortunate, deserving of urgent pity. And millions of dollars are raised to help us… to cure us, fix us, and eliminate the problem: eliminate disability.

Disability will never go away because it is a part of the natural diversity that is human life. I would rather focus my energies eliminating other problems that can be solved.

Help me inspire underprivileged youth by supporting my book drive.

That is why I am mounting a campaign that will benefit underprivileged youth, between the ages of 18 and 24. These young people have been through some very rough circumstances, yet have emerged with aspiration. I will be delivering a keynote address August 20 at the Gulfport Job Corps to inspire them even more, and through this campaign, my hope is to leave each student copies of my books.

If you support the concept of a disabled guy seeking donations to benefit non-disabled people, please donate towards my cause to put my books in the hands of underprivileged youth.

You can donate any amount. I appreciate you giving me the opportunity to make a difference in the world in a way that is not related to my disability at all. It feels great! Click here to donate:

http://www.gofundme.com/Give-My-Books-to-Students

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Big Week for Disability Community!

ADA Anniversary celebration bus

Celebrating Disability Rights

This is a big weekend for the disability community!  I’m sharing information I just received from disability advocate and longtime friend, Mark Johnson.

Saturday, July 26, is the 24th anniversary of the Americans with Disabilities Act, signed in 1990 by President George HW Bush.  The landmark civil rights legislation gives people with disabilities protections in employment, state and local government and public accommodations.  Each year, the disability community marks the anniversary with celebrations of independence and community, and with action around issues that impact people with disabilities.  Here is information about two national events happening under the backdrop of the Americans with Disabilities Act Anniversary.
The ADA Legacy Project
The ADA Legacy Tour, Friday, July 25, Houston, Texas:  The ADA Legacy Tour will kick off at Abilities Expo Houston on July 25, 2014.  The ADA Legacy Tour is a traveling exhibit designed to raise public awareness about the ADA. It is produced by The ADA Legacy Project, Disability Rights Center, ADA National Network and the Museum of disABILITY History. The nationwide tour will culminate in Washington DC on July 26, 2015, 25 years after President George HW Bush signed the ADA into law.  As a part of Abilities Expo, the ADA Legacy Tour will feature the ADA Bus, a four-panel display on the history of self-advocacy, displays on the preservation of disability history, celebrations of disability history milestones, and efforts to educate future generations of disability advocates and more.

 

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The United Nations Convention on the Rights of People with Disabilities, Tuesday, July 29, Washington, DC:  Between Sunday, July 27, and Thursday, July 31 the National Council on Independent Living (NCIL) will host its Annual Independent Living Conference. As part of the conference, on Tuesday, July 29, NCIL will organize a march, a rally, and Capitol Hill Visits in support of the UN Convention on the Rights of People with Disabilities(Treaty).  Community members outside of DC will organize local action events in support of the Treaty. Advocates will call on Senator Reid to call a floor vote, and will call on all Senators to vote in favor of ratification. The Treaty is critical to maintaining a U.S. leadership role on disability rights and to eliminating disability discrimination throughout the world.  The Treaty has bipartisan support, including strong support and leadership from Senator Bob Dole and President George HW Bush.

 

 

You Can’t Win if You Don’t Take a Shot!

Shutting up the Negative Voice Within has Created an Exciting Opportunity! 

By Greg Smith

Sometimes, opportunity is right there in front of us, but we let it slip by because we listen to the negative voice within.  This has happened to me too much in life, but I want to share with you a recent example of what can happen when we silence that voice.

I was in an email dialogue with a producer at NFL Films.  He contacted me weeks earlier because I submitted an entry into a contest and almost won.  I emailed him, thanking him for the opportunity.  I added as a footnote to the email:

“For what it’s worth, I’ve always dreamed of being the voice of an NFL Films production.”

It’s true.  When I was a child, the voice of legendary announcer John Facenda, combined with the slow motion highlights and the dramatic music of NFL Films productions inspired me.   It helped me forge a passionate bond with football and sports broadcasting.  As a kid, I watched “Inside the NFL” on our big wooden color TV console while holding a Nerf football, tossing it in the air and making a fingertip catch of my own pass while diving onto the couch.  And I would imagine Facenda’s “Voice of God” slowly delivering the words… “a spectacular catch to seal the victory…”

All of those hours watching NFL Films productions created a desire to go into broadcasting as a career.  Luckily, I inherited my voice from my father, which translated into a formula for success as an announcer.

The email was immediately returned and the words surprised me:

“Not making any promises,” he said, “But we’d like you to read the attached scripts and send them back to us.  We’re always looking for new and different voices.”

Suddenly, a life-long dream never pursued turned into a real possibility.  If I didn’t put that one sentence at the end of that one email, this dream of mine would never have had the chance to see the light of day.

I recorded the scripts last week and submitted them yesterday.  I was going to wait for NFL Films’ response before sharing this story, but I changed my mind because I have a lesson to teach regardless.

I took the shot!

I created an opportunity for a dream to come true.  Regardless of whether NFL Films adds me to their voice team, I feel victorious just taking the shot!

Muscular dystrophy affects all the muscles in my body, including my facial muscles.  Some sounds are difficult for me to enunciate clearly.  The “J” sound in particular is a challenge.  It takes careful concentration and focus to minimize it.  I can hear it in the final product.  It may or may not be a show-stopper.  We’ll see.

Muscular dystrophy also impacts my respiratory system.  My lungs are small.  More frequent breaths need to be taken to get sentences out.  I need to sneak in breaths during pauses and mask the sound of the breathing.  And my condition results in a large accumulation of mucus.  That mucus needs to be dispelled frequently during a recording session.  My “spit cup” ain’t sexy, but it gets the job done.

Despite all these limitations, I didn’t pay any attention to that negative voice within.  That voice kept saying, “You can’t be an NFL Films voice because you mumble your words!  You have a decent voice but if you can’t articulate or breathe properly, you might as well not even try!”

Whatever, Negative Voice.  Now, like Tom Petty says, the waiting is the hardest part.  Will I be disappointed if they decide to pass?  Yes.  But this experience has inspired me to reassemble my studio and get back to announcing.  Either way, I am better off from taking the shot.

From now on, I will always take a shot when an opportunity arises.  And I will always do my best to MAKE opportunities arise.  In every aspect of life, I will never let the negative voice talk me out of it.  I want you to do the same.  Take the shot.  If you miss, you’ll still be better off.

 

Dayniah Manderson featured in New York Times Video Profile

Dayniah Manderson is a friend I met through the “Living with MD” Facebook group last year.  The New York Times put together this video profile.  I guarantee you will be compelled to watch the whole thing.  Check it out and then check back this weekend for my exclusive one-on-one video interview!

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Listen to me on “Disability Matters” Radio!

I’ve loved radio my whole life!

I was on the radio yesterday!  I remember my first time ever on the air. I was a freshman in high school, about to broadcast my first high school football game live.  The Downers Grove South Mustangs were hosting the Hinsdale South Hornets in Downers Grove, Illinois.

My father had to make two trips from the field level to the press box.  On his first trip, he carried me up the bleachers and lifted me over the window into the booth.  On his second trip, he carried a big black box containing the radio equipment that would be needed for the remote broadcast.

Time was short.  The introductions had been announced.  The national anthem had been played.  And we still weren’t on the air!  My dad and a few teachers who were working PA and stats bumbled around with the equipment and finally, we had a feed to the studio.  The intro played and my life suddenly changed.

I knew that day that my future was in broadcasting.  I went on to do 4 years of play-by-play in high school, 4 years of play-by-play in college and work at a top news/talk/sports radio station after college.

After 5 years on the job there, I became inspired to combine my radio skills with my experience as a person with a disability and started a radio show called “On A Roll – Talk Radio on Life & Disability.”  The rest of the story is well-documented.

Yesterday, I was a guest on Joyce Bender’s “Disability Matters” show on the Voice America network.  There is something special about a host and a guest bonding, sharing important information and stimulating thoughts with an audience.   I hope you’ll agree that Joyce and I broke new ground in communicating the disability experience to the world.  Take a listen by clicking the image below!