Disability: Rolling with the Changes

Having lived 46 years with Muscular Dystrophy, “The Strength Coach,” Greg Smith has endured constant change for the worse. Every year, becomes physically weaker. But his accomplishments and satisfaction with life grow stronger every day.

Greg Smith is the author of the best-selling, “On A Roll: Reflections from America’s Wheelchair Dude with the Winning Attitude,” and founder of the14-year-running syndicated radio show “On A Roll: Talk Radio on Life & Disability,” later renamed “The Strength Coach Radio Show.” Photo courtesy of Greg Smith.

Although he only weights 65 pounds and cannot sit upright without support, his list of accomplishments is one nearly any adult would envy. Greg has been honored as an “Exceptional American” by the National Liberty Museum in Philadelphia; you’ll find his plaque and picture right between Stevie Wonder and Christopher Reeve.  Greg’s remarkable life story was revealed to over two million Americans in the ‘Audience Award Winning’ PBS documentary film, “On A Roll: Family, Disability and the American Dream,” which aired in 2005.

Greg is an active father of three, and radio and television host. He’s an author and professional speaker and travels the world with a message of inspiration. How does he do it? Greg has become an expert at adapting, at accepting change, and at moving through challenges with great courage. Although I haven’t had the pleasure of meeting Greg personally, he’s a long-time friend of my childhood sweetheart, a radio professional who lives in Chicago. Through Aubrey, Greg has become an online friend of mine.

Recently, CNN ran a moving story called “65 Pound Dad.” I have had experience in remodeling for disability, and it reminded me that I wanted to ask Greg about both how he has adapted his home to living with disability, and how he has adapted emotionally. Greg kindly agreed to be interviewed for Living in Comfort and Joy.

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Q: Greg, I have three friends with MS, but all of them were diagnosed with it as young adults. You began developing MS as child. Did your parents change the physical layout of their home to foster your independence when you were growing up?

Greg Smith travels the nation as a motivational speaker.

A: Well first of all, I have muscular dystrophy (MD) which is a neuromuscular condition, not multiple sclerosis (MS) which attacks the nervous system.  It is a common mistake.  When I was a young child, I could ambulate very effectively, although with a severe limp which caused my spine to gradually curve to the left.

When I was 13, I had what’s called a spinal fusion.  Metal rods were attached to my spine because I didn’t have the muscles to hold myself upright. I hobbled into the hospital to have that surgery and rolled out three weeks later in a wheelchair.  I could still walk around in the house until my late 20s when the ability sort of drifted away and one day, I realized I couldn’t stand up.

Ever since, I’ve been using a wheelchair fulltime. When I was growing up, my parents didn’t have to modify their home at all for me because I could climb up stairs on my hands and knees and functioned as normally as possible.  It took me longer and was more difficult, but I believe that made me stronger.

Q: What kinds of changes have you made in your home where you live to accommodate your wheelchair?

A:  When we built this home, we wanted a no-step entrance, so the house is built on a flat slab. All of the hallways are a little bit wider and every door is 36” wide. We have ramps leading to the various patios and the deck. The floor plan allows me complete access to the entire ground floor.  There is a guest room and another full bathroom upstairs, but I don’t access that area of the house.

This stunning interior is the dining room of Cynthia Leibrock's Green Mountain Ranch, a showplace and educational center for accessible design.

Q: I know that the wheelchair doesn’t begin to meet all the mobility challenges you face. Having heard your Pepsi story, I know that picking up dropped items and reaching things also poses problems. What kinds of changes in your home or adaptive devices help with those problems?

A:  Well there are some things that are especially difficult for me and picking things up off the floor is one of them.  I have a dressing stick, a long wooden stick with a rubber hook-like mechanism on the end which allows me to reach some things.  I don’t have the strength in my hands and arms to use one of those grabbers effectively, but I’m very good at using my feet to slide things dropped on the floor up against the wall to a height where I can reach them.

It’s amazing how creative a person can get when in need of a certain result.  When something falls on the floor that I need, it’s frustrating, but I know that I can always get it up if necessary.  I know it’s going to be a struggle though. My secret to success is that I look at those situations as opportunities to grow stronger and build the confidence in knowing that no matter what situation I face, I can usually find a way out.

Q: My husband and I had a great friend, Lucille Lockhart, now deceased, who was a great disability access advocate. It’s thanks to her that you will see curb cuts throughout San Francisco. Lucille was wry, and so smart she crackled. She was not about to let anyone think that disability was something that would never impact them. After my husband declined her invitation to serve on an access committee for our church – he told her that he wasn’t qualified because he wasn’t disabled – Lucille snorted and retorted, “That’s just a temporary condition.”

Accessible landscaping near Greg's home. A handsome mix of textures mark the walkways and ramps provide easy access.

It’s true that as we age, almost all of us develop a variety of disabilities. But many, perhaps most, of the elders I know, are in denial about these changes. They limp around the house, clinging to walls almost as frantically as they cling to the notion that they are not mobility impaired. Since I’m specializing in remodeling for disability – sitting here eager and able to guide them in home adaptation – I find this denial doubly frustrating.

You haven’t had the luxury of being able to deny disability and change. How have you coped? And what advice do you have for us aging Baby Boomers when it comes to embracing change and making plans that will (if we can muster our courage) actually extend our independence?

A:  I would argue that I have had the advantage of insight about change… just at an earlier age than most people. With muscular dystrophy, I’ve gradually lost strength and abilities. I understand what it is like to be able to do something one day and then a year later, you can’t do it anymore.  I can’t easily climb into my wheelchair from a bed.  I can still do it, but it requires a lot of effort and it isn’t something I’ll be able to do forever.

I cannot sit up in bed anymore.  I can still turn over in bed but it is a struggle and if I’m under a heavy blanket, forget it!  Sometimes when I wake up in the middle of the night, I have to condition my mind to resist the desire to roll.  To accept it, and just go back to sleep.  I can not dress myself anymore.  I cannot sit upright in this wheelchair without a strap holding me into place.

So I know it’s possible for people to accept change and the loss of abilities and still be able to maintain independence and live an enjoyable life.  I believe independence is the freedom to make all the decisions about how things are done in your life. It doesn’t mean you have to do them without assistance.  It just means you get to decide how and when the help is needed. I think once people embrace that definition of independence, they are free to enjoy life.

Green Mountain Kitchen
Accessible kitchen at Cynthia Leibrock's Green Mountain Ranch

Q: I have a couple disabilities: asthma and hearing loss.  Neither one is immediately visible and sometimes I can “pass” as abled for quite a long time when I’m getting to know people. But in my middle years, I decided not to do that, but instead, to come right out and tell people about my hearing loss – it really helps if they know that they need to look at me when they talk to me.  I need to be able to see their lips to aid my understanding.

I’m thinking about this because I find that when I am redesigning a house to accommodate a disability, one of the things that clients really like is when I can make the accommodations invisible.  I am quite good at this, and would love to find more clients who want my services. I understand that people just hate the idea of their home “looking like a hospital.” I don’t know how much of that is related to personal taste and how much of it has to do with accommodations “announcing” one’s disability to visitors. Or even to family.

Cynthia Leibrock, the doyenne of high-end, universal design – and an extremely gracious person –  always makes a point of making disability accommodations invisible to visitors. Those who visit her showplace, Green Mountain Ranch, just see a gorgeous home.

This prompts me to ask how your kids and friends have reacted to the accommodations in your home. Do they like the accommodations? Hate them? Not really notice? And how did all that make you feel?

A:  I don’t think our home is built in a way that makes it obvious that a person with a disability lives here.  There is no step to enter and the halls and doorways are a bit wider, but I don’t think that is at all noticeable. It is a beautiful home. I don’t think accessible has to be ugly.

Q: What room of the house is hardest for you to use, and why? What have you done about that?

A:  The kitchen is somewhat inaccessible to me but that is because I live with my parents and my mother has her way of doing things. I know that we could make the kitchen more accessible, but I don’t cook, so it’s not really an issue.

Q: Do you have a roll-in shower? Do you use a bathtub? And if so, what modifications have you made so that you can use it?

A:  I have a roll-in shower but I use a shower bench and have someone assist me transferring out of my wheelchair onto the bench.

Q: What advice do you have for me, as an interior designer and home remodeler who is interested in helping people to adapt their homes to overcome mobility impairments?

The front door to Greg's house - there's no step to impede his wheelchair.

A: Well, first of all, I would like to see a day where home designers and builders start thinking “someday, someone with a disability is going to live in this house, and somebody with a disability is going to want to visit this house.”  I think it is entirely possible to build all homes with at least one no-step entrance and bathroom doors wide enough for a wheelchair to fit through.

The concept of “Visitability” was introduced by Eleanor Smith of Atlanta many years ago. She has made significant progress in her efforts to make all new homes include basic accessibility including at least one no-step entrance, doors 32 inches wide and at least one half-bath on the first floor.

Q: I’d like to give you a chance to pitch your motivational speaking here in my blog. Tell me about where you’re going to be and what kind of gigs your seeking.

Thanks for the opportunity. I specialize in teaching people how to turn their challenges and weaknesses into incredible strengths.  I love to speak to audiences and share the lessons I’ve learned from the unique perspective I have as a person with a severe disability.

I think my knowledge can be useful to anyone. In my presentations, audiences will discover the three ingredients to building inner strength and learn how to use the power of addictions to their advantage. I love to roll around the platform in my power wheelchair and connect with my audiences.  I always get a few laughs. I always get a few tears. And I always have people come up to me afterwards and say how much they have changed since hearing me speak.

If anyone wants to hear me speak, they can call me at 228-424-3896 and we can find a local university to sponsor my visit.

Greg, I hope that someone will bring you out here to San Francisco to speak. I have enjoyed interviewing you over the net, but I’m sure I would enjoy meeting you in person far more. Thanks for joining me here at Living in Comfort and Joy.

Resource Links

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I often end my posts with an inspirational verse. This one is a favorite of Greg’s.

Greg Smith in the broadcasting booth.

Out of the night that covers me
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the horror of the shade,

And yet the menace of the years
Finds, and shall find me, unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate;
I am the captain of my soul.

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