Lakeshore Foundation CEO John Kemp.Editor’s note: Answers have been edited for clarity and brevity.
Just a handful of months on the job, Lakeshore Foundation CEO John Kemp sat down with CEDHARS News for a conversation on his background, the foundation, and the future of its relationship with the Collaborative.
Kemp transitioned to his new role after serving as president and CEO of the Viscardi Center and Henry Viscardi School in Long Island, New York. His long list of accomplishments as an executive in the corporate and nonprofit worlds and as an attorney include receiving the Henry B. Betts Award, widely considered America’s highest honor for disability leadership and service, as well as the Dole Leadership Prize. Other recipients of the award given out by the Robert J. Dole Institute of Politics include Nelson Mandela, as well as presidents Barack Obama, George H.W. Bush and Bill Clinton.
Kemp was a co-founder of the American Association of People with Disabilities, AAPD, and aided in the passage of the Americans with Disabilities Act of 1990. Kemp also served as the face of the National Easter Seals Society at seven years old before going on to become general counsel and vice president of development of the organization.
Tell us a little bit about your background, and how you ended up moving from New York to Alabama.
There was a sweetener in this whole thing. My wife, Sam, is from Birmingham and lived here for 28 years before we moved to Washington D.C. I met her in 1990 when I was the CEO of the United Cerebral Palsy National Organization. She raised her kids here, who are now grown and married. We have five grandsons who I call mine. And I’m Bo Pa because the oldest couldn’t say Grandpa, and I said I love that. Then, he got old enough to realize that, “You’re really my grandpa, right?” And I said “Yeah, but call me Bo Pa,” because nobody else I know is called Bo Pa.
So, after Sam and I moved to D.C. then to New York for 10 years, this position came open, and someone called me and asked if I’d be interested in applying. And I thought this is convergence, this is serendipity. I went through the interview process, and the Lakeshore Foundation Board of Directors was kind enough to extend an offer, and I accepted and set in motion a lot of moving and transition. I love Lakeshore, I’ve always admired Lakeshore. When I would come here when I was with UCP 20 years ago, it was fantastic. I was always aware of Lakeshore and all the good things it does.
My journey before that was literally wandering around the United States. I was born in Iowa. Shortly after, we moved to Minneapolis-St. Paul, and my mother gave birth to my sister– we’re 11 months apart. Three months after my little sister was born, my mother died from ovarian cancer. They didn’t know she had cancer. So, she passed away, leaving my dad at age 32 with three kids. My older sister was five years old, I was 15 months old, and my younger sister was three months old. I was born with my disability, so I was the only one allowed to be in the room when she died, so I have an affinity for someone I never got to know. I always feel that she was channeling me, and I channel her in any way I can, and my dad talked to us a lot about who she was.
My dad was an incredible human being. He had two masters’ degrees, put himself through school, grew up on a homestead farm on land that the government gave my grandparents in northeast Montana in 1913. He would literally ride a horse to and from school, and he moved into town to go to high school. At 14-15 years old, he was at a room 15 miles away from the farm, so he could go to school. So, talk about tough lives. We talk about, “Oh, it’s raining, my sweater’s going to get wet.” My dad was just a smart guy who lived a tough life and learned to be resilient and knew what was important in life.
He had a Midwest philosophy that, “You can do this, you’re going to do this just like your parents and your family. Life’s not always fair, but you’re going to figure this out. We’re going to figure out with you what you’re going to do, and you’re going to be a big success.” And I was like, “I don’t know about that. I’m going to try really hard.” But I think having someone believe in you, then support you and not smother you and kind of push you out of the nest and be there when you’re having trouble is so helpful – that was my dad. I owe everything to my dad, and my sisters say the same thing.
So, I got into Georgetown Law School, worked in government, worked for nonprofits and realized I had some skills that sort of led to falling into being the CEO of organizations. Then I just kept becoming the next CEO. I ended up at a law practice, having six clients of nonprofits for which I served as their CEO, so I was like, “I guess I’m going to be a CEO. This is what I’m going to do” So, I’ve probably run 10-12 national nonprofit organizations.
What made Lakeshore enticing when the position came open?
It has a reputation that I had already known about, and I had already visited. I had a good feeling about the organization and the people. I like the mission a lot, and I think the mission translates to personal growth and development and things that lead to people being able to live as independent of a life as possible.
I see these aspects of what we do here as enriching peoples’ lives and extending the quality of peoples’ lives. So, people who are really devoted to taking good care of themselves, and maybe they didn’t, which may be why they had a medical event or, come to Lakeshore after they’re released from the medical care or rehab. But they come here to really dedicate themselves to living a really quality life, whatever it is. Maybe they become committed like our elite athletes or maybe they are like the everyday kid that comes here and gets out of his wheelchair to get into the power soccer chair – he’s driving a cool super vehicle, smacking the big ball down the court and having fun being active.
I just think it’s a place of liberation, freedom, joy – it’s a great place. So, I was attracted to the mission, and then I got to meet the people that work here, and I thought these are smart, savvy, sophisticated people. They know what they’re doing and why they’re doing it. Part of why I came here is no other city has something like this. It doesn’t exist. You might have a pool associated with a hospital, and you might be able to go get in the pool after therapy, but it’s not recreational – it’s therapeutic, so it’s got different objectives.
What does “Inclusion Sciences” mean to you?
Dr. [Jim] Rimmer has talked with me about inclusion sciences, and I’m like, “That’s good.” And he kind of spells it out when he says it, and I’m like, “I can’t disagree with that, that’s really cool.” Unfortunately, I don’t think science is set up to be inclusionary, and I think what he is doing is remodeling science itself to make sure that people with disabilities with various conditions are included in science, and that’s a major remodeling. And he's doing it in a whole industry. So, instead of a stovepipe with the 10 schools at UAB or how departments are organized at a rehab center, he’s probably going to crosscut those to make sure that all people are included, if they need to and want to, in all the different sciences and services. That’s a big lift, but it starts out with big ideas like that.
How did you get into a career in the disability space?
It started when I was 7 years old when I was living in North Dakota. I went to a summer Easter Seals camp, which was six weeks, which really doesn’t happen anymore because it’s really a long time, and you were away from your family. At 9, unbeknownst to me, the North Dakota Easter Seals nominated me to be the national Easter Seals posterchild, and I was chosen. So, out of Bismarck, North Dakota, a town of like 30,000, on the edge of the world, we were flying to New York and Washington and met President Eisenhower in the White House. We went to Capitol Hill and got pictures with members of Congress, and I didn’t even know where Washington was let alone how it worked at 9. And then we ended up going to Los Angeles, where I was on the Today Show, meeting one of the Three Stooges. I was a really big deal as the posterchild for Easter Seals. And then the coup de gras, a doctor at a world health meeting I was at in New York invited my family and me to come to Australia in the middle of winter in North Dakota, but the middle of summer in Sydney, and we went there for 22 days.
I got a college scholarship out of it, and at 10, who knew if I was even going to go to college. It was a great experience. I think the notion was if someone gives me a microphone, I better say something somewhat smart and be prepared to say something smart about what it’s like to be someone with a disability like me, but I don’t like talking about myself very much. I know it’s ironic because I’m yakking it up here, but it’s easier to talk about other people and the conditions of living life with a disability. I’ve always been speaking and doing things, but I thought disability is just a natural for me. I was born with it. And who should be speaking for us? It should be people with disabilities, otherwise it’s kind of patronizing. We can be leaders, we can be in charge, we can direct, so I kind of took on this responsibility of trying to uplift the community. And I was not alone. This is what was happening across the United States and around the world. We just didn’t know each other, and we didn’t have the social media channels to be able to communicate easily, so what I was trying to do was being done by a lot of other people, and eventually we converged. And we developed a movement.
How did those experiences translate to helping form the ADA, and how do you view its legacy?
By the time the ADA had come about, I was well-prepared, groomed. I had testified to Congress on the Rehab Act of 1973, so by 1990, it was like, “Done, got it.” I was one of about 50-100 leaders from across the country that just said, “Our time is now.”
Since the ADA’s passage more than 30 years ago, there’s been poor progress, unacceptable progress in our movement, and I think there are a number of factors for why we haven’t proceeded further.
One example of the lack of progress is employment. There has been less than a two percent increase in the employee of people with disabilities since 1990. Employers will say, “Of course, we include people with disabilities, we wouldn’t think to do anything else but include people with disabilities in our workforce, as our customers, as our suppliers. Of course, we do.” But when it comes down to that one person who does the hiring, that person brings all their personal baggage and bias with them. They may think, “There’s no way this person who has trouble seeing can do this job, so I’m going to substitute my judgment for what I think this person can do, and I’m going to say no. I can’t imagine a guy working here without arms or legs. Are you kidding me? I need someone who can do everything.” They don’t have that expectation about everyone else, but they do about us. They would never embarrass the company by saying, “We don’t include people with disabilities.” Individually, people have a lot of biases against people with disabilities. We must continue to educate, advocate and insist on fairness in employment and in all other areas where progress has been slow.
Did you go to law school with the intention of being an advocate for people with disabilities and getting into this line of work?
There were no civil rights for people with disabilities at the time. When I finished at Georgetown, I thought I wanted to be an environmental lawyer. I’m a progressive-minded person, and the EPA was just being formed, and there was legislation about it. I thought I’d be an environmental lawyer because there was nothing on disability rights. Nothing until 1973 and the Rehab Act. I graduated college in ’71, then finished law school, and even though the Rehab Act of 1973 passed, none of the regulations were implemented for another four years, so I had that in the back of my mind, so I did environmental law. All the time, I’m on the Board of Directors for Easter Seals and getting my disability activism kicks out of that.
While environmental law was taking off, I could also feel a tipping point in disability rights, which I am so passionate about. So, I switched from environmental law about three or four years after law school and moved into the beginnings of disability rights.
So, in ’77 I went back to Kansas City and opened a law practice and consulting firm with my partner who graduated law school when I did. We were two 27-year-old guys with pretty wet law degrees. And we’re out there telling big corporations, “Here’s what you need to do, you’re doing it all wrong. You got to change the physical environment.” Forget about ICT, forget about technology. It didn’t exist at all. It was more attitudes, buildings, inaccessibility – those kinds of things. I didn’t go to law school to be a disability rights lawyer, but fortuitously, it popped up, and that’s what really drew me in. I was in it from the very beginning of disability rights.
What areas of research do you see as room for growth for Lakeshore and the Collaborative?
We actually just had a long meeting about this. Dr. Rimmer is an idea machine, and they’re great ideas. And, I mean, he can’t even begin to implement all his great ideas, which is too bad. There aren’t enough Dr. Rimmers in this world.
We have often grouped program evaluation with research, perhaps because we have a research department. While they are connected and can be mutually beneficial, we see research more broadly as something that benefits the community. We would like to embrace research related to many areas, including precision medicine. We are well-positioned to participate in research that explores what makes an elite athlete elite – their sports classification or their spinal cord injury? What makes someone who plays a wheelchair sport elite? Sports performance is just one area. What makes anyone feel better about themselves and their bodies and minds? The opportunity for real applied research is significant. I see us getting more granular and helping individuals monitor themselves, their exercise, diet, mindfulness and really looking more wholistically at individuals and how these aspects work together. I think this is a wonderful part of where we are headed.
Our ongoing program evaluation can definitely play a part in this research, but its focus is on understanding how specific programs contributed to the health and well-being of our members and identifying how we can continuously learn and improve to be more effective.
We do find that because we have access to a large number of people who researchers are trying to reach, we become a valuable partner. In that way, it really becomes opportunistic. We aren’t setting our own research agenda but are dependent on the opportunities that are currently being funded. I’d like to think that we could set our own agenda, but we would need significant resources to do that. We are trying to feed the funders ideas for research often through government relations type of activities, as the government, as all know, is by far the biggest funder. So, if we are thinking five years down the line, we hope to be feeding funders with six to 10 areas of research they should be thinking about including on their research agenda. The same is true with legislation, civil rights and in other areas. You’ve got to plant the seed so one day you can say, “Oh my god, there’s a bill. There’s funding with it and appropriation, and we’re the only ones uniquely qualified to do it. What a surprise.” That’s government relations.
What resources at Lakeshore do you think could be utilized more and/or people don’t know about?
Generally speaking, the excitement coming here was to help the board and the staff implement the strategic plan, which is to take Lakeshore nationally and internationally, bigger than it already is. NCHPAD is a national program. They really want to figure out how to best take what we do here, and it’s great, and get it to all the United States. For example, I think there is a big market for inclusion advice in the fitness field – gyms and fitness centers are all looking to grow memberships, including people with disabilities, but often do not have the trained staff or equipment to allow participation by everyone. So, we are looking at what we own, what we do uniquely here that can be packaged and shared in a variety of ways, including online.
Why do you think it’s important to find the balance between research and practice and how do you best go about that?
I believe continuing to build on and cultivate partnerships like our UAB/Lakeshore Research Collaborative are an important part of ensuring we have meaningful research and strong practice. We are excited to reach across UAB schools similar to the way CEDHARS is connecting the schools. Just like disability is so diverse, so many parts of living with a disability apply to so many disciplines at UAB in addition to the School of Health Professions. I think the Schools of Medicine, Engineering and the College of Arts and Sciences could be great partners, too.
I came here in 2018 and spoke at an international rights symposium to people with disabilities, and I think CEDHARS is a cross-departmental group that is going to tie the university together around disability issues, and out of that will come some research initiatives that we would love to participate in. We’re all about improving the quality of life for people with disabilities, and there’s so many ways to go about it. And I think CEDHARS is going to be the synthesizer that brings initiatives going on at UAB, including diet, aging, exercise, fitness, mindfulness and well-being, all the great things going on with regenerative medicine and stem cells and together. Think how transformational that could be. We have tremendous assets here – assets on the board, on the staff and we are committed to being a part of the transformation, embracing innovation and looking down the road to see what’s coming and where we can lead.
