Since the 1970’s and long before the passing of the ADA, Colleen Starkloff was part of the disability rights movement of individuals working toward societal change. Her work started serendipitously when Colleen was fresh out of physical therapy school; she met Max Starkloff, renowned activist, advocate, quadriplegic and the love of her life. Together, Colleen and Max founded Paraquad, Inc. and worked to create independent living options for disabled people who wanted to move beyond living in an institution and who wanted to live a full life in society. Throughout the years, Colleen has been teaching, speaking and working toward a broader society of inclusion through housing and Universal Design, a product design method that is accessible to people with disabilities and benefits all. Today, she organizes events that engage various home production professionals in Universal Design in order to bring about more accessible living spaces for everyone. ABILITY’s, Chet Cooper, spoke with Colleen about what lead her to this path of disability advocacy and the experience of Universal Design in her own life.
Chet Cooper: We have been running in the same circle for years, but I don’t know if we’ve crossed paths? Let’s start by sharing a little about your background.
Colleen Starkloff: We have had to have been in the same room as each other at some point—we just didn’t know it. Well, I started my career as a physical therapist straight out of school. I went to St. Louis University where I earned my degree in Physical Therapy. The year before I graduated, I was invited to interview for a job as the Chief Physical Therapist in a nursing home in Eureka, Missouri, a very rural area. I must have really impressed them in my interview because I was a year from actually graduating, but they held the job for me. They had a PT who worked part-time, so the plan was for him to stay there until I finished school. And once I completed my program, I was to take over the department as a Physical Therapy student right out of school. But I started my career as an advocate for people with disabilities when I met my husband, Max Starkloff.
Cooper: You must have great interviewing skills.
Starkloff: (laughs) It was a little intimidating, but I’ve never been one to back away from an opportunity. So, I took it. On the first day there, I saw a man in a power wheelchair, wheeling himself down the hallway with one arm, and he hooked his other arm over the handle on the back of the chair. As he was wheeling down, I never saw his face, but as he wheeled past me, he said to the physical therapist, “Hi, Roger,” and Roger said, “Hi, Max”. Now, I had heard about this guy named Max Starkloff who was a quadriplegic and lived in this nursing home. My sister had worked there as an aide during the previous summer when she was home from college. And he had asked her out on a date, but she didn’t want to go out with him because he was disabled, which ended up being a really good thing for me.
Cooper: That’s an understatement!
Starkloff: (laughs) My second day on the job, I heard this power wheelchair wheeling into my office, and when I looked up, I saw this man’s face and thought “He’s really a handsome guy”. But more than that, there was something about his eyes. The look in his eyes and the smile on his face told me that he was a man of real substance. I’m a face reader, and I could see that he was a really wonderful man. I fell in love with him right there, (laughs) right when he wheeled into my office. He had cooked up this idea with the office staff that he was going to come up to meet me, and then ask them to give him a ride to a lunch appointment he had on Saturday. They were to say, “Oh, we’re busy, we can’t do it”, in hopes that I would offer him a ride to his lunch appointment so that we would have time to get to know each other outside of the home.
Cooper: (laughs) That is some plan!
Starkloff: (laughs) Well, it worked because the staff said, “Oh, gosh, we’re really sorry, Max. We’re busy and we can’t drive you”. And that’s when I realized he was Max Starkloff. So, we chatted a little bit more, and when he left and went out to the elevator I thought, “Don’t be dumb! Follow this guy and tell him that you’ll drive him wherever he wants to go on Saturday.” So, I went out and told him that I had a couple of things planned for Saturday, but I could take him where he needed to go. I took the chance and he said, “Great!”. And the rest, as they say, is history.
We started dating, and two years later we were married. During that time I became very fascinated by a project he was working on to build an apartment complex where people with disabilities could live and work and not have to live in a nursing home like he was. I started listening to his thoughts, and I quickly learned that living within the community was an option for people with significant disabilities, which I never learned in PT school. We just learned how to rehabilitate people. We didn’t really know what happened to people with disabilities after they left rehab. Did they go home? Did they go to work? Did they have a family? We didn’t know.
Cooper: This before the ADA?
Starkloff: Exactly. I was so fascinated by this man and I began to also learn that there were other people with disabilities all over the country who wanted to see change. They did not want to see people with disabilities institutionalized any longer. There were people who wanted to fight for the civil rights of people with disabilities, and that’s what it ultimately became.
We built the housing complex, but we only could get HUD money for it, so it was a segregated environment of all disabled people living together. We quickly thought that that was not the way to go and started working toward integrated housing and developing an independent living center so that people with disabilities would not have to live in segregated housing. Fortunately, Max and I were able to get some federal grants to help with the cost of building. We were one of the first 10 federally funded independent living centers in the country, and we quickly began working on independent living services so that people with disabilities did not have to live in institutions.
Cooper: That is quite serendipitous the way this all occurred. It’s a love story.
Starkloff: (laughs) Yes, it is. I do a lot of public speaking, and that’s the story I open with.
It really is a love story. I’ll tell you, I was fortunate to fall in love with Max Starkloff.
Cooper: And all thanks to your sister turning him down the year before! Did you know that that was Max when you first saw him?
Starkloff: Yes, I did, because he said, “Hi, Roger,” when he wheeled by and I couldn’t see his face. I just saw the back of him. And Roger said, “Hi, Max.” And I remembered that my sister had worked there a year before and had told me about this guy named Max Starkloff who was quadriplegic.
Cooper: So you knew.
Starkloff: I was pretty positive that was him, so I said to Roger, “Is that Max Starkloff?” And he said, “Yeah, do you know him?” and I said, “No, I don’t know him.”
Cooper: “But I will know him!” (laughs)
Starkloff: (laughs) As it turned out, he showed up the next day and had this deal cooked up with the staff, and it worked.Universal Design kitchen
Cooper: You should always keep that story as the intro. It’s a great story.
Starkloff: He was a very, very, very dynamic man.
Cooper: Oh, he’s passed on?
Starkloff: Yes. He died in 2010. We were married in 1975. We were together for 37 years, and I lost him December 27th, 2010. It was a very, very dark day in my life.
Cooper: I would imagine that was hard for you.
Starkloff: Max rose to become a state, national, international, and local disability rights leader, and I was right there with him. What I have learned from Max and from my friends with disabilities–not only all over the country, but all over the world–is invaluable. We can’t learn these things in school. We could never understand just how difficult things are for people with disabilities. I never would have learned the things that I have in physical therapy school.
Cooper: I think they still have gaps in Occupational Therapy.
Starkloff: They try, I guess, because OT is much more community-minded than PT. They talk about home, how to incorporate things into everyday life to help the patient throughout their daily activities. PT isn’t like that though. And to really learn what it is like for people with disabilities to function in the world, you have to walk along side them and see what their daily struggles are.
Cooper: Right, they don’t go beyond like you did. You literally built something to improve the quality of the lives of people with disabilities. Schools wouldn’t think to teach beyond the individual patient and their specific needs.
You know, I was diagnosed with cancer last year and I’ve been in the hospitals getting PT and OT, and I’m very sensitive to the fact that most of the time when people see you in that debilitated state—and trust me, I was very debilitated with chemotherapy—they assume that you can’t do anything. So, I would make a point, and they’d say, “Are you living with your children?” And I would say, “No, I’m hoping to go back home and get back to my job.” “What kind of work do you do?” “I work in the field of disability rights”. They look at me, and I say, “I’m all about people with disabilities not living in institutions, living in the community and having families, having a job, having a very rich life.” And they always say, “Oh my gosh, that’s amazing!” And I’d say, “It is, and it’s also really possible.” I know that a lot of people like me have not been exposed to what the real options are for disabled people with community living and community participation.
Cooper: Speak about the summit. How long has it been going on now?
Starkloff: I started it in 2002. But, to give you a little background, my awareness of it came from a man named Ron Mace. He is the creator of Universal Design, and was a member of the disability rights community. His contribution—wait, do you know his name?
Cooper: It rings a bell, but I don’t think I’ve ever met him.
Starkloff: Well, Ron created the concept of Universal Design. Other people say they did, but it was Ron Mace.
Cooper: Where was he located?
Starkloff: He was at North Carolina State University at Chapel Hill. He received federal funding to create the Center for Universal Design at North Carolina State University.
Cooper: Okay, I remember! We did connect with him years ago.
Starkloff: I would be shocked if you hadn’t! I would think you guys weren’t worth your salt if you didn’t cover what was going on with Ron or the Center for Universal Design because you guys are all about disability. So, in the early 1970’s, when Max and I were in Washington for one of our disability rights meetings, we had dinner with Ron because we were friends. Whenever we came to Washington and we were all together, our main topic of discussion was, “What are you doing in your state? What do we need to do federally?” It was a kumbaya group of scrubby advocates who truly believed they could change the world—And we weren’t going to stop until we did.
We were having dinner with Ron one night, and he started talking about the idea of Universal Design. I said to him, “Ron, why are you creating a new concept? You worked so hard on the American National Standards Institute codes (ANSI codes), and getting the accessibility codes into the ANSI standards, why are you doing this? We have enough trouble trying to get people to do accessibility.”
Now, Ron was a really soft-spoken guy, and I just loved him. His response was, “Think about it, Colleen. When we create accessible codes and accessible spaces and even accessible housing, we create a segregated environment. Non-disabled people—who will possibly become disabled as they age—won’t want to live in accessible housing because they don’t want to face the fact that they may be disabled one day. We need housing that works for everybody—disabled and non-disabled—and we call it Universal Design.”
I was fascinated because I’d been doing a lot of housing advocacy and trying to work on creating accessible and affordable housing in St. Louis and in all of Missouri. And what Ron said made a lot of sense. The independent living and disability rights movement has been about integration from the beginning; it’s never been about segregation. So, continuing to create housing that segregates and isolates us–And that won’t sell to just anyone–doesn’t make sense. But housing that is easily adaptable and is universal for all to live in does.
Cooper: Ron’s work was very impressive.
Starkloff: Yes, he was a spectacular man. Sadly, in 1998, Ron Passed away. But I knew there was still work to be done from our conversations. So, in 2002, I contacted his staff who was left at the Center for Universal Design in North Carolina at North Carolina State, and I said, “I would like to do a national conference on Universal Design, and I would like to partner with you guys to do it. Are you game?” And, of course, they said yes. We host the Summit every few years because they take a lot of work and a lot of money; I have the energy for the work, but not the money. So far, we have held six conferences on Universal Design, and at the end of September, we’ll host our seventh. But because of COVID, it will be virtual this time.
Cooper: Who’s your ideal audience?
Starkloff: It’s a really robust audience. First of all, we cannot achieve Universal Design if designers and developers and contractors won’t do it. We’re just a bunch of advocates. We have a concept in our heads, but we don’t have the ability to get the funding and do the drawings and build the homes. So, we’re reaching out to architects, interior designers, builders, developers, contractors, remodelers, code officials, disability advocates, Realtors. Realtors are beginning to see the market for housing. A lot of people say, “I’m downsizing, and I want to be on the first floor. I want a first floor bedroom and bath and no steps to the second floor.” Because of the aging of America, seniors are starting to ask for this, but a lot of seniors are not aware of Universal Design yet. So, I want to expand our audience this year to also include the consumer who may want to downsize, or change their housing. I want to reach the people who have a child with a disability or a family member with a disability, and they’d like to have a house that is universal so their entire family can fully enjoy their home.
Cooper: Have your heard of Wheel Pad?
Starkloff: No, I haven’t heard of them.
Cooper: We did a story on them recently. They’re based out of Vermont. They created a house that is very similar to a tiny home, but it’s adapted so it connects to a person’s “regular” house, and it is, of course, fully accessible. They are having trouble finding funding in Vermont so that people can finance the addition. It comes to them on wheels like a tiny home, but they adapt it to the actual existing house. It is a very interesting concept.
Starkloff: That would be wild!
Cooper: What about visitability? Do you promote that?
Starkloff: I don’t. The reason why I don’t, and I’ll be very honest about this, is that visitability doesn’t give us what we really need. What we need is livability. We need homes we can live in, not just visit. It helps you if you go have dinner at someone’s house, but I think that disability rights advocates need to be advocating for housing that really works for everybody and doesn’t isolate us. I would rather spend my time working on design concepts that create that type of housing. I just did that in my kitchen.
People walk into my kitchen, and they have no idea that somebody in a wheelchair could work in my kitchen. My friend David, who has a power chair, will be coming over this week, and we’ll cook dinner together. I don’t use a chair regularly, but I did when I was very debilitated through my chemotherapy treatments, and I was able to use my kitchen independently and easily. I believe that when you create a concept like visitability, that just enables people to go visit a house next door but not buy it and live in it. I don’t want to spend my time on a concept that doesn’t give us what our community truly needs. I would like to spend my time teaching developers how to build housing that they can sell to absolutely anyone, that will convert if the homeowner’s needs change. Right now, I think that is most important for me to spend my time on.
Cooper: I agree we should all be doing what we are most passionate about with the time we have on this planet.
Starkloff: Since 2002, we’ve come a long way. We’re not there yet, but we’ve gotten into St. Louis County and the state of Missouri. We’ve gotten some Universal Design requirements put into funding for state housing trust funds and community development block grants funding—so that gets into something that’s designed to be affordable with public funds. I do see that more and more people are trying to understand it. And when you see models that are really great-looking, and then you see that the cabinet doors will come off of the base cabinet underneath the sink and the floor will pull out, so that if you suddenly can’t stand at your kitchen sink and need to sit at it, you realize that’s a house you can grow into. Because we all age, but also strive to keep our independence. A house like this is somewhere that allows people to keep their independence—disabled or not.
Cooper: Have you done an analysis on where you are today with your design modes? What is the difference in cost from a visitable home to making it a Universal Design home?
Starkloff: No, unfortunately, I don’t have funding to really see what the cost difference is, but there have been projections before. Ron Mace’s center did it years ago and he said, “You’re talking about maybe a tenth of a percent of additional cost.” However, another measure of success: we’re seeing Moen come out with touchless faucets so that you don’t have to turn a handle to turn the water on. We see in public spaces where you can put your hands underneath the water and the water comes out. You can put your hands underneath the soap dispenser and the soap comes out. Those are universal features. If you want to put them in your house, that’s up to you, but they’re becoming sought out more these days. What we are asking for, or what we are saying to developers is that you can broaden your buyer base if you sell homes that will easily adapt so that people who have various types of disabilities can also use them. We’re not there yet, but we’re on our way.
Cooper: Do you know about the house that was a showcase in Atlantic City on Universal Design?
Starkloff: A Universal Design home?
Cooper: If I remember correctly, Gilda Radner’s cancer organization connected with them too.
Starkloff: I knew there was one in Atlantic City, but I have not seen it.
Cooper: We did a story many years ago on it. I don’t remember the details, but I remember seeing the graphics for it. It was very cool. There was also a woman in Columbus, Ohio, Rosemarie Rossetti—she raised money and created a Universal home.
Starkloff: I know Rosemarie! She calls it the Universal Design living laboratory. She has a lot of Universal Design features there, and she also has accessibility. Her bathroom is accessible, and I think her kitchen has some lowered sinks and some raised sinks and stuff like that. She’s presenting at our next conference. She’s presented at two of our conferences before.
Cooper: That’s great. We did a story with her many years ago as well. Her home is impressive.
Starkloff: Oh yes, it is! (laughs) We’re trying to get as many models of Universal Design out into the mainstream media as we can so people can see it, and understand the value in creating homes like these. I can send you some picture of my new kitchen too. You would never know it’s a Universal Design kitchen! Another person who has done a lot of work with that is Mary Jo Peterson. She’s an interior designer and is well-known in the kitchen and bath associations network. She’s been a big proponent of universal design. You should definitely look into doing an interview with her. You should also speak with Richard Duncan, who stepped into Ron Mace’s role at the Ronald L. Mace Universal Design Institute after Ron passed. He’s been working with a lot of product manufacturers to create products for Universal Design. He is a really good guy, a colleague and a friend. He did the first five or six conferences with me. He’s a good person to know.
Cooper: Are you familiar with our nonprofit ABILITY Corps?
Starkloff: No, I don’t think so.
Cooper: One of the projects developed several years ago is called the ABILITY House, are you familiar with that?
Starkloff: No, but please send me information on it.
Cooper: Briefly, did you know the folks who created Concrete Change?
Starkloff: Yeah, that was Eleanor Smith’s organization.
Cooper: Do you know their history with fighting Habitat for Humanity?
Starkloff: I don’t know about that history, but I know what she created—I met her when I was going to a conference in Dallas years ago. She and I were talking and I told her about Universal Design, and she told me about visitability.
Cooper: I set up a meeting with Millard Fuller, who started Habitat for Humanity, knowing that Concrete Change was going out and picketing at some of the builds they were doing in Georgia. I created a partnership with Habitat through our nonprofit, and we started the ABILITY House project, where we built homes that brought in visitability, Universal Design, and were built by volunteers with disabilities.
Starkloff: How did it work?
Cooper: It worked incredibly well! We built our first one in 1999. We had 250 volunteers with disabilities build a house. It was a blitz build, so we built it in seven days. We got a lot of press; CNN covered our story. We built more houses across the country, in Washington DC, and from there we built more. Then we moved into a scenario where we also do something called the Brush of Kindness. It’s a program where we don’t build the full home, but we go in and retrofit, or we get volunteers to build ramps for a home. I’m surprised you hadn’t heard about that, the ABILITY House project; we have won awards for our work. We were even awarded one at the White House. Part of our push has been to get people with disabilities to be the volunteers that are working on these projects. So they have the benefit of volunteering rather than being the recipient. We also created the first job board for people with disabilities in 1995; abilityJOBS.com—It’s the largest job board in the world. At any time we have over 100,000 job seekers with disabilities connecting with major companies, governments and nonprofits looking to hire talent.
Starkloff: Wow! I’m surprised I haven’t heard of ABILITY House. Your organization does so much great work for the community. I’m sure you have helped so many people with disabilities in multiple ways.
Cooper: Thank you. From there, we built the first accessible online career fair, ABILITYJobFair.org. It’s a face-to-face video platform, and if you happen to be deaf, another video will appear and a sign language interpreter communicates between the recruiter and the candidate. It’s been built out with screen reader capabilities and speech to text.
Starkloff: You guys have thought of everything, haven’t you? (laughs)
Cooper: Almost! (laughs) We have one more thing we’re doing. We’ve built a pipeline for the entertainment industry to connect talent with disabilities—actors, performers, singers, comedians. We’ve talked to all the major studios including SAG-AFTRA and Screen Actors Guild of America. It’s called abilityEntertainment—abilityE.com. We already have thousands of talented actors with disabilities for in front of the camera, and we’re working also to connect behind the camera jobs in the entertainment industry—for producers, writers, crew, etc. who have disabilities.
Starkloff: Oh, I love that! That’s fabulous! Are you working with Terri Hartman Squire at all?
Starkloff: I’ve known her for forever.
Cooper: She’s always trying to push the needle.
Starkloff: Yeah, that’s what we have to do. That’s why Max and I were in it—we never made a lot of money. We lived OK, we had kids and family, we had everything that we wanted, just like any other family. The biggest difference was that he was a quadriplegic. He had a spinal cord injury. And people would stare at us and wonder why I married him. And to me, that was their problem.
Cooper: It takes a lot to move the needle for attitudes to change.