Lakeshore Foundation President and CEO John Kemp recently released Disability Friendly: How to Move From Clueless to Inclusive. The book explores disability and employment with personal experiences and lessons that Kemp has gleaned in his 60-plus-year involvement in disability work and advocacy.
All proceeds from the book are going to the Lakeshore Foundation to promote its mission of working with people with physical disabilities and chronic health conditions and promoting a healthy and inclusive lifestyle.
Kemp sat down with CEDHARS News to discuss the book as well as other topics regarding disability and employment. He also previewed his upcoming spaceflight with a group of people with disabilities and AstroAccess.
Answers have been edited for brevity and clarity. Click the questions below to see Kemp's responses.
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Q: Before we get started, I know you're about to be out of this world. So how far out is it?
Q: Before we get started, I know you're about to be out of this world. So how far out is it?
On Dec. 14, I will take a zero-gravity flight out of Houston Johnson Space Center. And it is a hollowed out 727 that is fully padded all the way around. There are a couple of rows of seats in the back, and there will be 16 ambassadors from five different countries flying all with disabilities, various kinds of disabilities. And there'll be the flight operations crew, the medical crew and others. And we do parabolas, the design of the flights are parabolic maneuvers, so we'll go up into the 40,000-plus, and then we'll peak and we'll start falling into free form, and we'll be weightless for 30-60 seconds. We'll do experiments while we're in that shape, then we kind of hit the bottom and pull out and then we pull a couple of G's of gravitational force. So we’ll all be like stuck on the ground, and then or on the floor of the plane. And then we do it over again. And we do continue with experiments or whatever we do 20 of those in two hours. Then we land. I mean, we've got flight suits. We've got, you know, you name it, we've got it.
I'm just hoping that we can get it all done. I mean, I've got patches and in fact, lakeshores communications department develop the patch for Astro access. So, all of the five countries and the patch that will be used will be available. We go there on the evening of the 11th, which is a Sunday night. So, if the weather's fine, we fly on the 14th. There's a backup date of the 15th, and then for sure, we'll come back on the 16th.
It literally came across while I was finishing up my book, and they were looking for volunteers and people that were interested in participating. It was just crazy. It's colliding, so to speak. The purpose of this is to study disability inclusion and future space travel. So it blended perfectly with my book.
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Q: Of course, you don't decide to write a book overnight. When did you decide to write this book, and what was the impetus behind it?
Q: Of course, you don't decide to write a book overnight. When did you decide to write this book, and what was the impetus behind it?
I have been working in this field of disability employment practically my whole life, and certainly my whole professional life. And I have spent my time advising companies on what their obligations are. And I always felt that I was the inside advocate. When I was hired by companies to advise them on how to go about hiring and promoting and even terminating people with disabilities. But I was going to give them full compliance consulting, and tell them, “This is the best way to do this.” And if they chose to backoff of that, and they couldn't afford to do everything I thought they should do, then at least I was on the record of giving the best advice.
I had started doing training and consulting when I was 27 years of age. And I would say, in the last five to 10 years, I started thinking I needed to get this down. I've done maybe two to 3,000 speeches, one multiple-day training programs, and I thought this stuff is just always in my head. And I just needed to sort of codify it. And so I put it down.
It's part autobiographical, so people are curious about the journey of people with disabilities. You know, once they find out, they kind of can't wait to talk to you about it. A lot of credit is due to my dad and my family and my wife. And then another part of it is really a deep dive on what is disability culture. How do we talk about it? What does it mean? People with disabilities really need to understand it because it's kind of like how we feel we rightfully belong in places, and, you know, why shouldn't we? And then the third part is really a business primer that says, “Here's the process by which you can go through to be able to achieve full inclusion of people with disabilities in your workforce.”
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Q: In the book, you wrote that there’s only been a 1-2% increase of labor participation of people with disabilities since the passage of the ADA. Why do you think that is?
Q: In the book, you wrote that there’s only been a 1-2% increase of labor participation of people with disabilities since the passage of the ADA. Why do you think that is?
The issue of disability is more complex than other protected class groups. And I also think we are so diverse within our disability definition. When you go from being on the spectrum to having intellectual and emotional disabilities to having sensory disabilities to having physical disabilities, and then aging into disability, when does legally the disability start? So, I think there's a great deal of uncertainty and confusion, and I tried to make some sense out of it. But the broader issue is, if you categorically refuse to include people with disabilities in your net as you're trying to find the best people and promote them, then you are making a really big economic mistake, as well as a humanistic mistake. You're going to neglect a lot of people who could be helping you and helping themselves and helping society.
It costs maybe a little bit more money. The dependency that go along with having a disability are substantial. There are those who think, left brain, very calculated, what is the cost? But, I always think about what is the cause by not including people with disabilities in the equation? And it's pretty substantial, too. Not only do you lose people's talent and their livelihood and their own self-respect, but you now have kept the costs of dependency up, and you're not improving that for society.
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Q: Whether it's a lack of productivity on the part of people with disabilities or costs associated with employing people with disabilities, how do you make the case that employers should hire people with disabilities?
Q: Whether it's a lack of productivity on the part of people with disabilities or costs associated with employing people with disabilities, how do you make the case that employers should hire people with disabilities?
I think there's a long-standing and deep-seated existence of a bias towards ableism and an able-bodiedness in the way jobs are designed and written and performed, going all the way to where not a lot of people with disabilities were and still aren't working. You have jobs being performed by non-disabled people, you have job descriptions being written by non-disabled people, then you have the measurement of success or failure being analyzed by non-disabled people because they're just not in those jobs. There's so few of us out there, even though our numbers are great.
When you think about the inherent discrimination that's occurring, discrimination is lawful until it's not. I want to say I can use the word discrimination, and it doesn't mean it's illegal or unlawful. It's the unlawful discrimination that is prohibited, so people discriminate every day. You choose a Coke over Pepsi, you choose to put cream in your coffee or not. People discriminate in what they want to do. When I think about the deep-seatedneus of this issue, it's really a deeply embedded societal challenge of getting people with disabilities in the workforce because most people don't see us in the workforce, and we have a hard time fighting our way into the workforce.
So, when we take and deconstruct job descriptions and say what is fundamentally needed to perform a job: do you need sight, do you need hearing, do you need fingers, do you need to carry and lift things? When you start really nailing it down as to what are the essential job functions that are called for in the ADA and before that, the Rehab Act of 1973. You have to clean out the inherent bias against people with disabilities, which is unlawful discrimination if it's they're unnecessarily demanding in terms of physical or other characteristics that are needed.
I look at job descriptions, and I see: “must be able to speak.” I'm thinking like, that's not a valid job requirement. I know so many people who are nonverbal. And then lifting requirements. They put in a high-lifting requirement, so that people don't injure themselves, and the workers-comp claims don't go up. But when you break it down into a job analysis, and you have someone monitoring a job being performed, you usually find out that you don't need to lift 50 pounds. And if you do, it's probably once a week or once a month. And there are all sorts of lifting devices that you can put something that heavy on and get it on there, raise it up, move it to a different location, slide it off. There are tons of accommodations that are a lot cheaper than injuring someone's back for the rest of their lives. When I see 50 pounds on every job description, I think something's really wrong unless you're in a heavy trades industry, and everybody's lifting something god-awful heavy. And even then, I would say there better be redesign of those jobs to reduce the amount of injury that will occur from something like that.
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Q: What progress can be made in legislation and policy in terms of formally getting rid of discrimination? And on the flip side, how can we make progress in culture? Because you can make all the progress you want policy-wise, but until you really change culture of employers, you won't have the progress that you really need.
Q: What progress can be made in legislation and policy in terms of formally getting rid of discrimination? And on the flip side, how can we make progress in culture? Because you can make all the progress you want policy-wise, but until you really change culture of employers, you won't have the progress that you really need.
I'll just say that you're very right about culture. The ADA and the Rehab Act, and even most state disability discrimination laws are really quite good. It's the failure to enforce and the lack of resources devoted to enforcement of these laws that is missing. If we just enforce the ADA, it would be great. There’s another wave of potential ADA amendments that are being considered right now that clarify that the Internet and the World Wide Web and access to information and communication technologies is explicitly intended to be covered by the ADA. There has been a split decisions by circuit courts of appeal that lean one way or the other. For the most part, though, they have been leaning very much so that the effective communication clause in the ADA does require that this applies to an unanticipated unknown when it was written. You have to have effective communication. Along comes the Internet after the law was written – It still applies. It's just interpreted that way.
But because of the doubt of some of these jurisdictions, congress is back to thinking about it. When the 2008 amendments to the ADA were being considered, I was jumping up and down saying, “Say it specifically. Be direct.” And they would not do it because they thought they would lose some of the votes that they had gathered. So, number one, and to answer your first question is enforcement alone will do it, and possibly a second wave of amendments to the ADE, or a free-standing piece of legislation, is in the works to clarify that ICT is definitely covered and should be covered as to prevent disability discrimination in these areas.
Culturally. that's the deep change that's needed. And if we can get people to relate it to something personal to them, they feel it. Why do some corporations get all excited about ADHD, or sports in disability? It is because somebody in a high position has a family member, a child or is that person with that kind of condition, who says, “This has just gone on too long, and I can do something about it.” So, as a sole champion, they decided they're going to use their bully pulpit to make changes in their company. And they step out and lead, and a lot of companies watch and listen and go there and learn and figure out how they did it.
I think a Walgreens high-level executive has a son who has autism. And he found a way for his son to work in the distribution centers in Walgreens, and they have like 12 distribution centers. Ten of them are very old buildings that are just archaic. The newest ones that he was responsible for building are so advanced. They use color coding, they use very inclusive design of the flow of the products, a great logic in the way materials are collected off of conveyor belts and dispersed into baskets and are sent to various Walgreens stores around the country. So, they were able to make those kinds of changes, and their hiring is really inclusive. It's just a substantial number of people with disabilities being hired in these places, because there’s just this untapped bunch of people that are out there.
But it's the one-off leader that makes that happen. And if that champion within the company retires or resigns, or moves on to another job in another company, he or she might take that with them. But, is anything left at Walgreens when that executive left? And the answer is yes, Walgreens got it embedded in their culture – that this is a better way and a safer way to do it. So, that's really a win-win cultural change.
Also, about 20% of a job changes every year. If you think about what you were doing a year ago, two years ago, and what you're doing today, it's probably changed somewhat. Even the tools that you're using have been upgraded or changed in some way. So, if you think about over five years, you might be thinking you're doing the same job, but you're doing a slightly different job in different ways, or your job has changed pretty dramatically. But that's a lot of change. That should not be surprising to a lot of people. That's what life is all about life is constant change and our ability to adapt to it. So, culturally, it's really about people taking on a mindset that is a much broader, much more inclusive way of looking at how things are done and why they're done. And understanding in their core, that this is a broader, better way of doing business.
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Q: One of the chapter titles caught my eye: “I'm Not Here to Make You Feel Better About Yourself.” Can you give readers a tease what to expect what that quote may mean?
Q: One of the chapter titles caught my eye: “I'm Not Here to Make You Feel Better About Yourself.” Can you give readers a tease what to expect what that quote may mean?
We, people with disabilities, are so used to trying not to offend people because we basically need some help along the way that we go out of our way to not irritate and annoy people. A few bark, and yell and scream about injustice, but most of us kind of figure out a way to dance through, “I just need a little bit of help. And do you mind? And thank you,” because you don't know when you're going to need help go into a building that's not accessible. You're in a chair, and they carry you down through steps. Your whole behavior changes because how are you going to get out of there? You're going to need help getting out of there. So, you're always trying to be really nice and good and happy.
There are just people who can't get out of the charity mode, and they can't get out of the “I'm just going to help you, I don't really want to hire you to be my subordinate, my equal and god forbid you become my boss. But I'm just going to help you poor people with disabilities. I feel so badly for you. I'm sorry whatever happened to you happen to you. But, that's all I'm going to do. I'm just going to help you.” We need people to help us just like they need us to help them. This is not a one-way street, right? Part of our culture is that if they give us something we give something back. We give things freely all the time. This is the way life is. So, I don't like the idea that we're just an item to be used to help someone feel good about themselves.
And I think the medical model and the charity model of disability of the ‘40s, ‘50s, ‘60s or even the ‘70s has kind of blown up and gone away. And a lot of younger people who are going to school with kids with disabilities and now out in the workplace, recognize really quickly, something's missing when someone with a disability is not included. But for the old school folks who still think “Those poor folks, god forbid it be me. But I'm going to help out those folks.” And I have lived long enough to see this whole cycle. And it's unjust to people with disabilities to put us in that situation and to allow ourselves to be put in that situation. When you and I get help, all we owe. The other person who's providing me help is the decency and respect and the gratitude for what they did for us just for what they did for us.
They've taken the handles off the backs of wheelchairs, that people who use wheelchairs on a regular basis use every day. And I will just say, when I was younger and I didn't use a scooter wheelchair like I have in my office here and trunk of my car and at home, I would get to the airport, and I'd ask for a wheelchair push. And that's great airlines are responsible for them. But people who were pushing me would sometimes push me into a waiting area at the airport, and I'd be facing a wall, and they would just walk away. I mean, like, “Wait, wait, turn me around. I don't want to look at a wall. I want to be as nosy as everyone else and observe human behavior and look at other people.” But, they took the handles off of everyday wheelchair users’ chairs because people were always pushing in places they didn't want to go. So, it allows them to retain the dignity of self-control. So, it's just a mini example of kind of our evolution of our independence.
It's not done with malice. That's the other thing that I want people to know, and I tried to write about this. This is not done out of malice. Some bigots do wake up in the morning and say, “I hate people of a different color or a different gender.” But, disability is not something that triggers that. There's a slight exception to that. And that is people with severe psychiatric and emotional disabilities.
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Q: How does the education system play a role in disability employment, and does it give a model for the employers?
Q: How does the education system play a role in disability employment, and does it give a model for the employers?
At no time in the history of the United States has there ever been so many highly educated people with disabilities who are also unemployed. At some point, frustration is going to sit in. People are really going to use the ballot box. I mean, hopefully, it'll be in a very nonviolent way – not urging any kind of inappropriate behavior. but in a ballot box, in a campaign or something, we've got to give people with disabilities the respect that is due.
We have set up systems, and the educational system is doing a pretty good job. It can do better, but it's doing a pretty good job of producing a lot of people with disabilities and getting them through high school and college and with degrees and certificates of some kind. That says that they're capable of doing some work and living independently in the community. But then the employers on the other side are not fulfilling that expectation of the American dream and giving them an opportunity to work, which says that their job criteria is probably unnecessarily restrictive and too narrowly drawn. And they need to open it up to include people with different kinds of disabilities. But, this is a bad moment in time for people with disabilities who are rightfully frustrated. That is just a moment in time here. But we're in the middle of it right now.
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Q: All the proceeds from the book are coming here. What was the impetus and made you want to bring the proceeds to Lakeshore?
Q: All the proceeds from the book are coming here. What was the impetus and made you want to bring the proceeds to Lakeshore?
I have fallen in love with Lakeshore. I think what Lakeshore does is really profound. I have never lived my life trying to make a billion dollars. It's not in my nature. I think Lakeshore was kind enough to allow me to work on the book while being the CEO here. And I never spent more than 20% of my time on any day devoted to it. And in return, I said, I'll do this. So, hopefully, Lakeshore will get a good amount of contributions.
So, sales are going well. And I'm really happy about that. I'm happy for Lakeshore I'm happy for the community. I want businesses to buy it, I want people with disabilities to buy it. I want them to validate it because when I'm giving my talk about disability culture, I want to see them agreeing or disagreeing. And if they disagree, I want to know where am I wrong? But for the most part, I reflect what I think people with disabilities have wanted to say for a long time but have just not found an avenue.
And when I was a little boy and I was the poster child, for National Easter Seals, somebody said if somebody puts a microphone in front of you, say something smart and meaningful that helps people with disabilities. So, I think of this book is my microphone, and I tried to put into that book what I think would be what people with disabilities would want to say to the employers and to the public out there, policymakers, educators. This is who we are. “This is what we want.” And it's not unfair and overreaching what we want. We just want to be treated equally. And that may mean doing things differently, slightly. But just give us a chance, and I think we'll perform.