Chet Cooper Shares the Story of Christopher Reeve's Disability Advocacy with Ryan Millsap

Ryan Millsap, Chairman & CEO of Atlanta-based Blackhall Studios, is one of today’s top entertainment executives! With a vision for Blackhall that’s ambitious, energizing, and boundless, Millsap is blazing a trail through the heart of the South – and setting his sights on the future of entertainment. Listen and learn as Ryan Millsap journeys through the myriad industries, people, and landscapes that traverse the complex and dynamic world of film production.

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Ryan: Welcome to the Blackhall Studios Podcast. I'm Ryan Millsap. I got into the moviemaking business by being a real estate entrepreneur, but also because I'm a big movie fan. I get a huge kick out of watching blockbuster movies that I watch being made at Blackhall. COVID-19 has put a temporary crimp in production — hasn't it for everybody? But some amazing movies will be shooting at our studio soon, and I'll have some amazing folks on the podcast.

I'm also into ethics and philosophy, and I think you'll see those themes throughout the podcast. So, you're wondering: where exactly does the movie business and philosophy come together? That's the journey I want to take you on on the Blackhall Studios Podcast. I’ll bring you guests from both worlds, and I think you'll be surprised at how much philosophy goes into the world of making movies. Plus, you'll get an inside look at the new Hollywood of the South right here in Atlanta, Georgia. Give a listen. I think you'll enjoy what you hear. I'm happy to have you along for the ride on the Blackhall Studios Podcast.

This is Part Two of my conversation with Ability Magazine publisher and former National Lampoon publisher Chet Cooper. In this podcast, we go a little deeper into the story of Christopher Reeve, an amazing actor who, as you will recall, fell off a horse and broke his neck, resulting in complete paralysis for his remaining years. It is astonishing to think of the man who was Superman becoming the man who would never fly again.

This is the first podcast where Chet Cooper reflects on not only his groundbreaking interview with Reeve, but also on the media pressure that led up to it, and the varied voices that demanded Reeve be a role model for the disabled. A fascinating perspective on Christopher Reeve – the man who was and will always be Superman.

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Ryan: So, Chet. When Christopher Reeve had his terrible accident, how did you come to know him? Did you know him before the accident, or just after the accident? Tell me about how that relationship grew.

Chet: So, my first connection with Christopher Reeve came about not because of him personally, or for knowing him prior to the accident. It was the outcry and frustration from the disability community – or its leadership; the people dealing with the upfront advocacy work. They were quite frustrated at what was coming out in the media about Christopher Reeve being now the spokesperson for people with disabilities.

Ryan: For what reasons?

Chet: His parent role – with that being his label, everything was focused on being able to walk again, and the whole media push. The subtext was: if you can't walk, you're not a whole person. I was getting a lot of information coming through these channels that the majority of people in the country didn't know about.

The magazine was relatively new, and had only been around for a few years. And it was really a sensitive topic, to say the least. He was beloved by most of society. The media didn't understand, really, what they were doing, in the sense of the frustration – all the work that had been made prior to this incident – that you don't need to walk. Using a wheelchair is just a form of mobility, and it's the person's ability, not the disability, that you should look at. All of this work, they felt, was going down the drain. In the times that there might be an interview with Christopher Reeve, we didn’t push for that. We just wanted to see things settle down. Then we could bring these two stories together and talk about that.

Eventually, there was enough push by Christopher Reeve’s team to invite us to come into his house in New York and meet with him. I was still a little bit sensitive, so my thought was, “Let me get someone in the disability leadership, if you will, to come along and be that person to have that interesting debate between the two seemingly different camps.” So, I had set this up where I was going to get Dr. Fred Fay involved.

I remember going to his home. I drove up to New York and went to his house, and Dana Reeve answered the door. There was an angelic component to this person. I came up with my sister. My sister lives in New Jersey, so I came up and decided to visit her. And she brought her two young boys. But while I was meeting with Christopher, I actually did hear it – just as I was closing the door. Dana Reeve was in the kitchen singing, and I remember my sister telling me about her sitting there for the time I was doing the interview, of how angelic her voice was as well. I got my sister and nephews to meet Christopher before I showed them the interview. So, that was a nice moment for everyone to connect – on kind of an interesting family level.

So, my interview started with Christopher, and it was somewhat standard. But I had asked if I could bring someone else into the conversation, which was Dr. Fred Fay. Dr. Fred Fay was a well-connected person within DC and other areas of advocacy. He had a spinal cord injury at a very early age. A cyst had been created in his spinal cord from the injury that was possibly going to move if he sat up. The surgeon said, “We can't take it out, and if it moves, he'll die.” So, he had been in bed for 20 years.

When I met him in Massachusetts and spent a weekend with him, he had motorized his bed. He could get around his house by lying flat on his back and scooting around his house on hardwood floors. And he had a computer screen system – kind of a novel setup that he had created, that is not so novel these days with live screens. But he had created a system around his bed that he could telecommute, basically, into areas of Washington, DC – to the White House – and have these discussions with the administration at the time.

We got Dr. Fred Fay to agree to talk with Christopher. As the interview started, I put them together. I asked Christopher, “Is it okay for me to do this?” And he agreed. Now, you have to realize that Christopher had been traveling a lot, and he had traveled too much – to where he actually acquired a bed sore, which he contracted, and the doctors said, “You can't travel; you have to lie flat, and you need this to heal, because it's life-threatening.” So he was flat on his back when I met him in his bed. And to that time, he was still a professional in trying to talk to people; interview; again, do everything he can to find the cure for his spinal cord injury. So, I put the two on the phone together, and they start talking.

The idea of Dr. Fred Fay being one of the leaders in the disability movement would express the issues that were occurring at the time that the media wasn't really picking up – on the frustration going on in advocacy programs. Groups that were picketing him were giving voice to the idea of this cure concept, rather than quality-of-life issues about people with disabilities and looking at the person's ability. So, after I put them together, Fred really didn't get into that core issue that I was hoping would happen in that lively discussion of where things were – and an awareness, too, that may or may not have occurred in Christopher. Awareness of what was happening. So when I hung up, and I saw that that hadn't occurred...

Ryan: What did you want Fred to say when you brought him in?

Chet: Let me tell you what I was trying to do there, that didn't quite come out. I shared with him this idea that the media had put him into this leadership role as an advocate for people with disabilities. Christopher immediately rejected that concept and said, “I am not the spokesperson for people with disabilities.” I said, “I agree, but what you’re not understanding is that the media's done this.”

And so, we went back and forth about getting to that level of him understanding, but him also pushing back. “I am not that person.” We went back and forth, and I think the message got across with what I was saying, but it took a little... I could have probably done a better job, I felt. I asked him at the end, “Was I hard on you?” He said, “Yeah.”

My heart dropped. It was really painful for me to think of the beating of this person who once was Superman. I don't think he even had the ability to move a finger, which came a little bit later. While I was there, the sun was coming through a window, and I was watching the sun move across his face. It got to his eye. I said, “Do you want me to pull down that shade, because it may be hurting you?” And he said, “No. I actually feel that, and it's good to have sensation,” which is, again, kind of troubling for somebody who's having what you’d call a TAB – a temporarily abled body. I can’t do things with my physical body. And here I am, limited to the support of others – but with a great mind, which was evidence to the work that he was doing. So, that was my first encounter with Christopher.

Ryan: Help me understand the evolution of his thinking. Obviously, where it started was a place that, it sounds like, the community of those with disabilities didn't like; the place it started for him. It sounds like he was equating disability with, you know, if somebody was short, or if somebody was not as intelligent, or if somebody had brown eyes – whatever the case may be. Something that nobody would consider to be a disability, he was equating in ways that made the community of the disabled feel unfairly judged. Is that a fair comparison?

Chet: I think, over time, Christopher was more and more aware of what was happening with the disability movement after our discussion. I think, in the beginning – like many people, even still today – he equated disability to not having ability. And he definitely had ability. Just, his attitude was so indicative to the spirit of who he was to begin with, pre-accident.

Actually, the next time I met him was on the set of The Practice. He was on the show; he was playing a character, which was a nice plot twist. He went back to acting. I should say, our relationship grew from there. One of the programs with him, a nonprofit, is a project with Habitat for Humanity. We created a program called The Ability House, and it's homes built for families with disabilities of low income. But we access volunteers with disabilities to build the homes.

He realized, in his progression of maturation around disability, that there were... I think anyone, in the beginning, if you’re in an accident, you want to get back to where you were immediately. And that's what he was trying to do with his push for spinal cord research. He had raised millions and millions of dollars to move science along, putting a lot of resources, money, and the weight of his celebrity into actionable items. He had a lot of celebrity friends that brought in more awareness and more funding. And the message eventually changed from just pure, “I need you to make me a rat, and do whatever to me; I just need to walk again,” into ideas of, “Okay, there's a medical model, a social model.” And that construct should be looked at such as, ‘look at the person, not just the disability.’

I think, within a relatively short period of time, he grasped that. He actually started to say he is a disability advocate, and he was a spokesperson. But that took a little time. I think anyone would take some time to do that. And his was quite a unique situation, and quite a troubling accident. When you think of science, you think of... just that disconnection in the spinal cord that you need to fuse together, in some basic way; working something together. It seems like that should be a relatively simple maneuver. Which, of course it is not.

And the good thing about those research issues is that it does affect other situations; other diseases that occur there, that will kill you if the disease continues on. So, those research grants and the money that was raised actually helped people that acquire diseases as well.

Ryan: How were Christopher's attitudes towards this new disability? How are they indicative of how a lot of people who didn't grow up with disability, or with other people who had disabilities? Do you think he ever found the right balance between fighting against what he felt like was disability, and acceptance of the disability itself as part of his life?

Chet: Well, when you have a person that is so driven – if you look at his life history, and everything he did in his life, whether it was sports or horseback – the activities that he was doing were quite extreme, to some degree, and I think he did everything from yachting to airplanes to horseback competition. In acting, he was very driven. And I think anyone in that mindset will continue to try to push the limits of science – whatever that might be – which is not only benefiting the individual, but benefiting many others.

So I don't think that you ever settle into not wanting to do that. I think it's a life mission at that point. But I do think he settled into understanding. I mean, the fact that the foundation shifted and started doing all these life grants – I think that was the indicator that there was this awareness that people do live with disabilities. They aren’t unproductive. Some people are born with disability; some people acquire disabilities. And some of those situations are best looked at as, “Are they having an equal playing field in society?” Sometimes they’re not. So therefore, grants can help with that. Whether it's assistive technology that might be needed, or issues around accessibility in your home, whatever the case may be. What we were doing with the grant he gave our nonprofit was making a home accessible for someone who needed an accessible home because of age.

Ryan: What are some of the unawareness from people that don't have disabilities that are most hurtful or frustrating to those with disabilities?

Chet: There was a situation where a person in Texas had COVID-19. There was a critical issue with the hospital determining if they should continue to help this person regain their health, or not continue with the medical procedure that anyone else would have had in that person's condition. The fact that the hospital looked at him – he was a quadriplegic, by the way – and their response to the medical care should alarm everyone. There seemed to have been made a decision by the hospital; the determination was made, due to his disabilities, that life would not be supported.

It's really troubling to think of how, oftentimes, the medical model, or the people that you would think would be there to support everyone's lives, sometimes has the mindset that society has – and that is, a person's life like Christoper Reeve’s is not of value. Even Jerry Lewis had said a person in a wheelchair is only half a person. When asked, he said, “Well, he can't get up and run down the hallway.” The irony about that is, at the end of his life, he was using a wheelchair, and he didn't get to ask him, “What do you feel like? Are you half a person now? Are you still Jerry Lewis, but you just happen not to be able to walk at the moment?”

I think what people might need to reevaluate is thinking of your own life, or a family member. You acquire some disability from an accident, and your life is shifted. Now, instead of using sneakers, you’re using a wheelchair to get around; whatever that situation might be. Do you really feel like you should not have medical treatment if you get ill? I mean, is that something that you want society to condone? What is this idea of disability?

And there will be people out there that might hear what I'm saying and say, “Well, it helps the gene pool if you get rid of people with disabilities.” The irony of that is, you don't know what the gene pool really needs. Maybe you do need certain ‘disabilities’ that will maybe fight a thing like a pandemic. Maybe that particular disability won't be affected by it. I mean, there's so many scenarios that you could paint that show we don't know what's what. But the fact that you would be so callous, and think you know the right way to affect someone else's life, and not do what you should do as a human, I think is troubling.

Ryan: Yeah. What I was imagining was, this world that we live in every day was largely built by people that can walk and talk and see and hear and use their arms; use their hands. But if this world had been built by a species of animal that had no legs, but looked like a human in every other way, then our world would be totally different in many ways, functionally.

What I'm trying to imagine is, from an empathetic standpoint, when you approach disability, saying, “Well, what if the tables were turned and 90% of the people had this particular disability – what would the world look like?” Then the people that didn't have that disability would live in a world that was largely shaped by the people that had a particular disability – but that disability would then be the baseline. Whereas, right now, the baseline is the majority of people who may not have a particular disability. I'm trying to just work it out in my own mind what it is that the disabled are asking for, such that I could try to be more empathetic with the desire to ask, and the desired outcome.

Chet: I remember seeing a Twilight Zone episode where everything's topsy turvy, and you're only seeing a view from one aspect. The way they showed that episode... I can't remember all the details, but basically, the ‘flip’ was that everyone looked different. It was the person who they were trying to, quote, “fix;” “cure,” that was objectively beautiful in our eyes. But the rest of the world were totally of a different look, and so that person was trying to get an operation to make them like everyone else, and it wasn't working. The doctors were all shocked that it didn't work. And, basically, they were going to put them off into some camp or something like that for those that had that physical disability; that appearance.

But if you think of Darwin, and survival of the fittest, you really can't know; science can't predict what would survive. What is it that would be that key element? Because life is dynamic, as we're seeing with COVID: while we might have expected a pandemic of some sort, you don't know what that pandemic will come out to be. What if, for example, people that had ADHD, or some kind of a problem with their spine, had this condition that put out a chemical within the body causing autoimmune deficiency for that person. But that autoimmune disability – the issue actually was capable of fighting COVID, to where the population would need that. So, people with this disability became the heroes, and they were the ones that would become dominant in the species.

I mean, there's so many scenarios that can be painted in that sense that we don't know. And so, for us that ‘play god,’ if you will, in whose life is worth – we don't know. Things work in mysterious ways. I think that this is kind of rich: through storytelling, and creating these novel movies, people will learn on issues that you wouldn't expect. But the bottom line is, as human beings – most people, I always believe, react accordingly when something happens.

If you look at the number of people that will help anyone in a disaster, you don't stop and say, “Well, are you a Republican, or are you a Democrat? Where were your parents born?” You go in, and you work with that community. You help that community. People come together and act as a village and help each other. You don't have tribalism; you don't have nationalism. You give your support. The irony of mass tragedy, whether it’s earthquakes or floods or fires, is that people actually come together as humans. And I've always found it a curious thought: how do you get that to come out in people on a regular basis, rather than just during trauma; during times of disaster?

Ryan: Do you see any parallels between the struggle for awareness in the community of disability, and the struggle for awareness in the Black Lives Matter current campaign?

Chet: Well, I think there's a lot of parallel with any civil rights movement within the advocacy of disabilities. It's always been couched in opposition to the civil rights movement. Whether it's getting to the public awareness in that sense or not, I’m not sure. But when you look at Black Lives Matter, it's always been a civil rights case. With society's view in changing the laws that are in the books – from segregation to gerrymandering – there are so many components that, society tries to address, as society matures and becomes more aware of issues that may be under the radar for some. And as it exposes its ugly head, people start to become more aware.

I think in the disability movement, it’s a very unique situation. It's the largest minority in the country; in the world. It's the only minority that anyone could join at any moment in time. The majority of people will join it because of age. Reports are that, on the average, everyone will experience one or more disabilities for 13 years in their own lifetime – an event that usually occurs because of age. Hearing loss; cancer; different diseases that affect the body. As we're talking right now, our bodies are falling apart. If this was on video, you’d see that pieces of me are falling off as we speak. Isn’t that funny?

There are movements afoot that are trying to address the awareness of that. We're all in this together. We usually use this language that is a part of the fabric of life. And I see that, in the sense of awareness building, whether it's through BLM, the fact that there's been an ongoing – whether it's conscious or unconscious – situation to not create an equal playing field. It's a similar thing with disabilities. And disabilities are so broad. But it's accessibility; or employment accessibility. Whether it’s getting in for work, or into a building, or the PDF forms that are not accessible for someone who’s blind. They can't access certain things. So there are barriers.

For people that are black, there are barriers in such a way, coming from zoning issues within certain areas of the country. So I do think there are absolutely parallels between the two movements. But the frustrating part about all that is, also, if you have a disability and you're a minority, it becomes even more of a struggle; more of a challenge to break through, whether it's employment or just socialization.

So, there are slow movements afoot for how to make things more accessible for people with disabilities, both on the social level and on a private level. We deal with that ourselves. We created the first job board for people with disabilities in 1995, and now we’ve recently created the first accessible online career fair. But we've seen this with minorities – the idea of hiring someone who not only has a disability, but as a minority, because they still have a higher threshold of breakthrough, which is some of the work that we’re doing.

Ryan: So, Christopher Reeve: you came to confront him. You brought this other gentleman who also had a disability. And how did that confrontation go?

Chet: Did I go to confront Christopher Reeve? I suppose I did. I would have thought of it exactly that. But there are times that you... okay, confront people. Or ask them, and see where their minds are. What are they thinking? And what is it that maybe is not evident to the way the story has been already pushed out there? Did anyone interview the person? Did they ask certain questions? Did it come out in such a way that it's not a bleed-or-lead story, which is not something we typically like or do? Oftentimes, media is so pushed toward ratings that they lose sight of what they're supposed to do. Even some of the best news outlets still compete; wanting more eyeballs, more hearing people; wanting to be the first to break the story.

So, the idea of looking at and seeing if there's something more with Christopher was quite of an interest to me. But also, the idea of me being the one doing this – I felt like there should have been a third party involved. But you're bringing up that that idea that, I think, everybody has some degree of empathy to other people. Sometimes they don't know that there's something happening for them to bring that empathy out. Also, understanding that there's a difference between pity and empathy, and that the pity model is a very destructive model, especially within the disability arena. You need to address those issues of asking if somebody needs some support or help, or just suggesting to them, “You need my help.”

It's two sides of a coin that are really different, and you need to understand that you have another mindset. I used to travel with a young man that was really physically fit. And we jumped on a local bus, and it was not accessible. So, here’s this strong guy. He drove his wheelchair into the bus, and then muscles himself up the stairs. And somebody on the bus nearly goes, all good intentions, to help him, but does not ask – just grabs his shoulders. And my friend almost punched him in the face. Of course, the person had no idea what was going on. “I wanted to help you.” And you just don't do that. You just don’t grab somebody. But his view was, “I'm trying to help,” and we had a discussion with him with what was going on.

I don't know if we got through to him, because I think he still was shocked. How can anybody be mad at somebody that's trying to help? But that pity approach – an instant idea of ‘you need my help’ instead of asking – is problematic. It’s problematic in what we call the medical model, of looking at people in such a way that they need our support, because they don't have that ability – rather than asking if that support is needed.

Ryan: One of the things that this conversation makes me reflect on is, where is the line of disability? Like, compared to LeBron James, I look disabled on the basketball court. So where is that line?

Chet: Well, I think your lack of basketball ability would not be considered a disability – sad to say for you. You can't use the ADA to protect you when you’re competing against LeBron. A disability is identified as a lack of one or more life activities. It's been more defined by 2008’s redefinition by Congress, because the Supreme Court had ruled that a person with epilepsy, if they're taking the medication and the seizures have stopped, is not determined to have a disability and therefore not protected under the ADA. In that, they actually started to define what a disability is. And the reason that's important is, there's a part of the law that's a discrimination. And you can't discriminate, and you’re protected, if somebody finds out you have epilepsy and they don’t hire you.

So, that's part of how the ADA can protect you. And it’s defined. They called out things like epilepsy and cancer. The idea is to create an equal playing field and not have issues that would hinder the ability of a person in travel, in employment, having reasonable accommodations. And again, it's a reasonable accommodation. So it doesn't say, for a small company, “Okay. You need to knock out that wall to make it accessible for this one particular employee.” That's not reasonable. There are buildings out there that are old, that have not been modified, and they can't afford to modify them. There are different ways to look at what a reasonable accommodation means. But a reasonable accommodation for you would be to have a stepladder to play against LeBron. That would not be considered a personal disability, but that would be a reasonable accommodation.

Ryan: Chet, this has been fantastic. It's so interesting. I mean, there are a lot of gray areas. It's a very interesting philosophical exploration. I wonder how many philosophers there are in the world who focus on the question of disability. Chet, thank you for taking the time. This has been fantastic.

I'm Ryan Millsap. Thanks for listening to the Blackhall Studios podcast.

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Ryan: Putting an exclamation point on the end of each podcast, I share inspirational sayings that I write and share on Instagram. “There is not one good reason to not let it go. There is not one good reason for worry. There is eternal reason to be present now.”

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