Beyond the Wheaties Box

By Doug Heir
Published: Agust, 2003

Doug Heir is a publicity agent’s dream. The story almost writes itself. Injured while rescuing a drowning child in 1978 (who turned out to be crying wolf) Heir seemingly took C6-7 quadriplegia in stride and went on to become hugely successful as (among too many other things) an attorney, an author, a corporate executive, a renowned motivational speaker, and an athlete with more metals and titles than any Paralympic athlete in history. He’s been in all the right Who’s Who volumes, featured on Lifestyles of the Rich and Famous and To Tell the Truth, and celebrated on the Wheaties box as “America’s Greatest Wheelchair Athlete.” As a highly sought-after speaker, Heir tours the world, sharing the stage with the likes of Michael Jordan, Bo Jackson, Hershel Walker, John Elway and Lex Lugar.

New Mobility visited Heir’s Cherry Hill, N.J., home to meet the real person under all the glowing publicity. A limo and a Rolls-Royce grace the circular driveway out front that faces an idyllic river vista, and two lift vans are parked out back by the neighboring fast-food restaurant, an apt setting for a man of contrasts. (“They don’t like it much when I’m out here in the back throwing shot puts and javelins,” he says with a smile.) Heir’s 13,000-square-foot house is a sprawling tribute to ultimate accessibility. Every inch was designed to accommodate his wheelchair, his work as a personal injury lawyer, his sports training, his recreation, and his ability to entertain. The big-screen television fills one wall from floor to ceiling, the conference room walls are covered with signed celebrity photographs, “his” Wheaties box sits on the coffee table, the mirrored weight room contains several high tech workout machines, along with more than a few duct-tape-rigged barbells, and the indoor lap pool and hot tub are inviting on an almost sinful level.

Some might raise an eyebrow at his interior decorating tastes—an eclectic mix of top quality woodworking, concrete statuary, plastic flowers and fine art—but there’s no doubt that Doug Heir knows what he likes and is perfectly able to indulge himself.

NM: You’ve made quite a name for yourself, Doug, and I’ll ask you about some of that in a moment, but have you ever pondered where you might have been at this point in your life had you not sustained a spinal cord injury?

DH: I probably wouldn’t have gotten on the Wheaties box or been a world champion at anything, but I think I would have been successful at something. I was always motivated to make a good living doing something I could be proud of. I would rather it have never happened, but at the same time, I’m glad it did.

NM: What was your very first reaction when you realized the true nature of your injury? And what do you think was your primary motivation for learning the new rules and moving on as successfully as you have?

DH: Right there in the swimming pool I asked my brother to let me drown, but he assured me that we’d face the challenge together and overcome it. My family was very supportive. But I went through four stages. At first I thought I would get better. Then it was, “Why me?” After that, I felt like giving up. I even went up on the roof of the rehab center in the middle of a thunder storm, thinking maybe lightning would strike my halo.

There were a number of small but very meaningful things that happened around that time. A homeless man pointed out to me that he could walk, but was miserable, and so I shouldn’t confuse walking with happiness. And then my sister who is mentally challenged said: “People have been staring at me my whole life, and I just say: ‘This is my life, not yours.’” At the top of the motivation list was God and my parents. With all that support and encouragement, I finally just said, “Enough is enough” and moved on to “What are you going to do now?”

NM: How important is acceptance to the process of moving past an SCI and eventually moving on?

DH: In rehab they said, “Accept the fact that you’re going to be in a wheelchair for the rest of your life.” Well, it’s just a play on words, and I’ve learned to deal with it, but I really don’t accept that because I still look forward to walking one day. But it’s difficult to overcome that hurdle. You are in a wheelchair, and you can’t walk, but it’s more than not walking. You have other issues: grip, bowel, bladder, etc. What helped me a lot was looking at people who were worse off than me. I drew strength from them because if they could deal with it, then I could deal with it, too.

NM: You got into the thick of things pretty quickly. Was athletics your first “disability community” experience? And how did you get from there to board president of the National Spinal Cord Injury Association?

DH: I was a good football player and a black belt in karate before my accident. Ramapo College had an adaptive athletic program, and at first I assumed it would be pathetic: people with blankets on their laps, and their mothers would be pushing their wheelchairs. And I never personally knew anyone in a wheelchair, so the level of competition, especially on the national and world level, was a real eye opener. Finding out that I could be intimidated by a quadriplegic athlete was a great motivator!

After the Wheaties box, the phone really started ringing. At one point I was on 30 different boards. I spent all day opening mail! I called the NSCIA early on in my quest for information about my new injury—18 years before they asked me to speak at one of their conferences and join their board. The thing I like about them is that they aren’t about finding a cure to paralysis. Their main focus is helping people with everyday life through their resource center and through peer support. They have chapters throughout America. It’s a place you can go for help and hope and to make new friends. So, until there’s a cure, there’s always the NSCIA.

NM: Speaking of cure, how do you come down on the various Christopher Reeve-related controversies?

DH: I think everybody’s hopeful for a cure. But I heard that there was going to be a cure in two years when I was first hurt 22 years ago. So until it happens, my greatest wish is that people just get busy with their lives. Not wait for a cure. If it happens, great, but you need to stay healthy and you need to keep yourself busy.
A lot of people look up to Christopher Reeve, but my feeling is that he’s only one person. He has high visibility, and if he can help find a cure, that’s enough to ask of one person. I’m very proud of him. I’m proud to be his friend. My best advice to people is to focus on their life and not worry about what Christopher Reeve is doing.

NM: Some have expressed their concern about the strict accuracy of Reeve’s reported “20 percent recovery,” and that there will be a lot more high tech exercise equipment sales if people around the world think that FES bikes and walking harnesses will not only keep them healthier, but will also get them up and walking. What are your thoughts?

DH: I really hope it’s all on the up and up. I flew to Russia to find the cure they were touting some years ago, but I came back with my head down. But I think John McDonald is doing remarkable work with stem cells and with the FES bike. I’ve been to his center at Washington University in St. Louis. I’ve seen the rats and the research results. I tried the bike. And I believe him. I found him so passionate about what he does. His whole staff is passionate. I was very impressed, and I’m getting an FES bike myself.

I also tried the walking harness down in Alabama. I took over a hundred thousand steps with it ... I mean it actually does the work, and the health and fitness benefits are tremendous. But I hope nobody’s saying that this equipment will make you get up out of your wheelchair and walk. I am certain it will build muscle, improve circulation, and make you much healthier in general.

And in reference to a cure, I believe they’re almost there. And even when the cure comes, you probably won’t be an Olympian runner, and the wheelchair will probably always be nearby, but maybe standing up to take a shower or taking a few steps will be a great start.
But until then, I like something Elvis once said: “Happiness in life is having something to do and something to look forward to.” I think what sometimes happens to people when they’ve had an SCI is they forget there is something to do, and they forget there are things they can look forward to. The challenge is finding something positive to do ... now.

NSCIA: What Now?

While Doug Heir is president of the National Spinal Cord Injury Association’s board of directors, the new executive director is Marcie Roth, formerly executive director of the National Council on Independent Living. Roth has taken over NSCIA’s top leadership position at a critical time in the history of the organization.

The NSCIA has been around since 1948 and is primarily about information and peer support, helping people with SCIs move on to functional and productive lives. But in this new era of a seemingly imminent cure, motivating newbies to accept their condition, adapt and move forward can be trickier than it used to be. New Mobility asked Roth how this present environment was impacting her job and how the organization might be adapting as a result. And specifically, what does she hope to accomplish while her hand is on the NSCIA tiller?

“ I want to build a bigger boat,” says Roth. “Everybody would like to see a cure, but I have a real commitment to balance. And what messages are being given today? I’m very concerned about the impact of any rhetoric suggesting that folks who have adapted to SCI and gotten on with their lives are ‘quitters,’ or any message that constantly focuses on SCI only as a bad thing and perpetuates the ‘better dead than disabled’ bias. We need to disconnect this public perception about walk and not walk. SCI is a different thing. We need to redirect attention to access and quality of life.”

Does this mean the NSCIA is downplaying Christopher Reeve’s recently reported gains being attributed to an aggressive functional electrical stimulation program?

“ There is no downside to keeping healthy. Anything that helps avoid the secondary conditions that plague so many people with SCI is a good thing,” says Roth, “provided it doesn’t sidetrack life and opportunity. I have no time for divisiveness. We can’t waste time arguing about a cure. NSCIA is about opportunity, but we need to speak with a strong, clear and authentic voice. Justin Dart is gone, and we need to see his passing as a chance to step up to the plate. There are no heroes out there right now, so we need to become a roomful of Justin Darts. We all need to step up.”


And how do we go about “stepping up”?

“ The NSCIA wants to advance that voice. We’re going to be doing that in several ways. First, the board has authorized dropping the $25 membership dues. It sometimes costs more to collect that revenue than the total of the revenue itself. If we’re going to have a strong voice, we need numbers more than dollars. Stakeholders, that is, folks with SCI and their support systems, need to be setting the agenda. So the message is, ‘Come on in!’ We’ve been helped in our new membership drive with the gift of over 150,000 names ... and that’s just the start.

“ Secondly, we’re going to be advancing our peer support system. The newly injured need access to people who have been there and done that. There is too little national focus for SCI-specific information, so we want to use our growth as an opportunity to improve that.”


And the bottom line?

“ Gazillions of dollars have been spent on research for a cure. How much money has been spent on seating issues, chair design, and maximizing quality of life? We need to get out there, and we need to be heard.”