Disability in the Workforce

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LINDSEY WELLS, HOST: From KVMR, and in partnership with FREED, this is Disability Rap. 

DAVID CLARK: I thought until I was in college, I was the only person like me who had dreams of a normal life, a family, a job, et cetera, et cetera. I thought I'd be the first. 

WELLS: Today, two people with cerebral palsy, who found gainful employment, overcame barriers and stigma, and found their passion for life. 

WHITTIER MIKKELSEN: I just started seeing the world a little bit differently, and moving slower and looking for color, and people thought my photographs were pretty cool. 

WELLS: That's all coming up on Disability Rap. Stay tuned. 

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CARL SIGMOND, HOST: Welcome to Disability Rap. I'm Carl Sigmond with Lindsay Wells. 

WELLS: We're joined today by two working professionals who have cerebral palsy, David Clark and Whittier Mikkelsen. We're going to talk with David and Whittier about their experiences in the workforce, challenges, and misconceptions they've had to confront and overcome about their disabilities, and how their disabilities have helped to shape their lives and careers. 

David Clark is a computer programmer and systems engineer based in the Boston area. Growing up in Connecticut in the '70s and '80s, David was quickly identified as a candidate for inclusive education at a time when this wasn't the norm. He excelled in school and went on to the University of California, Berkeley, receiving a BA in Cognitive Science and Rhetoric. Through his career, he has built vast experience with online application development and server administration. David currently works as a system designer and a digital research applications team at Mass General Brigham. 

Whittier Mikkelsen was an emergency room clinical psychologist when chronic pain forced her to move away from his career and slow down. She took the opportunity to look deeply within herself and at the natural world. Through this, she reconnected with her passion for photography and art making. Whittier's art has been shown at the Sterling Art Gallery in Dunedin, Florida, the Dunedin Fine Arts Center, the ArtLofts in St. Petersburg, Florida, and Art Cafes in the St. Petersburg area. 

SIGMOND: David and Whittier, welcome to Disability Rap. It is great to have you both with us and there is so much we want to talk about. David, I want to begin with you. Can you tell us about your early experiences with computers, and how those experiences opened doors for you? 

CLARK: I want to go back a little bit earlier because I think it's important. This was in the early '70s, so the personal computer was not even a thing yet. When I was three, my mother went to the local school board and asked the special ed director to provide me with a typewriter. They were, "Typewriter? What will a three-year-old do with a typewriter?" My mother's argument was that I not going to be able to write and I still can't write and if other kids were starting to play with letters, and writing letters and whatnot, then I should be getting familiar with the typewriter keyboard. 

Fast forward 10 years, my mother had always propelled me. Throughout life, computers have always opened doors for me, and given me an outlet to talk, to meet with people, having something in common, older people, programmers, whatever. Many are story about connecting with people and what not. The real start of it after my first test programming a TRS-80 Model 1 with a take drive. That's how old I am. 

The rise of BBS's, what we call BBS's, or bulletin board systems. This was way before the internet. There was a whole network of. You would actually use your phone. You had what's called a modem and you would connect to other computers via the phone. I met some people that way. In fact, when I was in Berkeley, I worked on setting up the bulletin board system for what was called at the time the Disabled Children's Computer Room which is now the Center for Accessible Technology. 

WELLS: Whittier, this question is for you. I find psychology fascinating. What drew you to the field of clinical psychology and working in emergency medicine? 

MIKKELSEN: That's a little bit of a journey for me. I started out in college as an education major, and I was told by one of the teachers back in the mid-'80s that I would not make a good teacher because of my handwriting on the blackboard. He advised me to go into a different area. That was crushing for me because my grandmother was a teacher, my mom was a teacher, and I had always thought that I would be a teacher, but he felt that that was not a good idea, so he sort of guided me into psychology. 

He didn't really guide me into psychology. I just found that I was taking more psychology classes because I was interested in how the brain works, and how we think. Then for about seven years, I worked in a half-way house for mentally-ill people, and then I went back to graduate school. At that point, I thought that I would be a counselor, like a one-on-one counselor that sees the same people week after week, but again, I was guided not to do that because of my facial expressions. 

I didn't quite know where to go, so I started just applying for jobs. What worked for me, because I had all of that mental health background, 7 to 10 years, what worked well for me was to be in the ER where people were very, very much in crisis, and they were more focused on themselves than on me. I like a fast-paced environment. I did try to be a therapist for a little while. I found it too slow, and-- not too boring, but too isolating for me. I'm a very social person. The ER provided me with the fast-paced that I like, and the stimulation that I also crave, so it was a really good fit for about 15 years. 

I climbed the little ladder, and I was a supervisor for a number of years doing that. There were some workarounds that I made, as you know, disabled people are very creative, we have to be. My boss was amazed that I could do my notes so fast, when in reality, I would talk into my phone, and dictate my notes, and then e-mail myself, and they'd be all typed up. I discovered workarounds for myself in every job that I've ever held because of dexterity issues especially with my right side. 

WELLS: I want to ask a follow-up, Whittier, because you made a point a little earlier on, when you were discussing that they guided you to another profession. Can you go into details what you felt, if you're comfortable telling us, how you felt when you were guided in that other direction? When you had your heart set on education, can you go into more detail about that? 

MIKKELSEN: That discussion was very, very hard for me. Also, I had another discussion similar to that when I graduated from grad school with another professor, but the first one where I was guided out of the classroom, so to speak-- now, this was before computers, before white boards, so my handwriting would have to be up on the blackboard. I understood where he was coming from. Back then, I was shy, I was very shy. That might have been due to my disability, and feeling different, and wanting to go where people wanted me to, so I was a little bit more pliable. 

Now, if that had happened now, I would have probably fought back. Again, this was right after the ADA came out. It wasn't even-- I graduated in the year 1990 from college, so there weren't any programs for me. When I went to grad school, I had a typer, I had a note-taker. There were all these programs in places within that 10-year period, 15-year period that weren't there when I was in college. I think I was a victim of that kind of discrimination where they didn't want me in the classroom. They didn't want a disabled teacher teaching. 

I didn't realize it back then because I saw myself as everybody else. I didn't see myself as disabled, even though I've always had CP. I was very active. It just didn't occur to me that that would be an issue, so I was floored by that. Again, when I graduated from grad school, my adviser sat me down and said, "Your facial expressions are going to give you away. To be a really good therapist, you have to really be in control of your demeanor." She wasn't advising me against it, but she was warning me of the possible implications that my disability might have. God forbid, a therapist show emotions, right? None of us can hold a poker face very well, right? We tend to wear our emotions on our sleeves, so to speak. 

CLARK: Can I ask a question, is that okay? 

MIKKELSEN: That's okay with me. 

CLARK: Looking back, how do you feel about those guys? Do you regret listening to them? Say more about that. 

MIKKELSEN: I feel, when I look back, I don't hold anger at that because I fell into a career that I loved. It works out in the long run. I don't hold a grudge, but it was a well-known teacher, a well-respected professor who did that. Now, I've kept that quiet, and I won't say his name, but everybody bows down to him. I didn't really fell like I could bite him on that. I went to Antioch College. I'm sure that if I had, we would have had a protest. If I had more sense, more-- I don't know, more strength, we could have worked with him a little bit better, but I don't think I would have been happy in the classroom, so in that way, it works out. 

WELLS: Thank you, Whittier. I want to thank you for bringing out those points. I know how important, and how meaningful it is for you to talk about it. I know that it can be hard to talk about it because of what you went through. Thank you, David, for asking that question as well. This is a conversation that needs to continue. 

David, can I bring you in here for a minute? You attended Berkeley in the years after Ed Roberts went to school there, and when others started, the Disability Students Movement, which grew into the Independent Living Movement and the first Center for Independent Living located right in Berkeley, California. I imagine that that was at least part of what drew you to Berkeley. 

CLARK: Yes. 

WELLS: What were the impacts people like Ed Roberts and Judy Heumann had on your time at Berkeley? 

CLARK: Absolutely. In fact, when I went, unfortunately, they don't have it anymore, but they had something called the Residents Program which was for first-year students. It was a program where you lived in the dorms, but there were personal assistants available 24 hours a day. Part of their job was to help you find and hire and manage your own PCA. The goal was you would use them less and less as the year went on. 

I was very lucky in that I didn't need much help. I've always been surprisingly independent given my appearance, but it was very nice to have that built-in community. The residents program was supported by the California Department of Rehab. It was started by Ed Roberts who essentially started the program in Cowell Hospital, which was the on-campus hospital. 

SIGMOND: Thank you, David. I understand that before you went out to Berkeley, you were mainstreamed in school at a time when that was relatively uncommon. How do you think the Independent Living Movement and all the activity in Berkeley helped to pave the way for your schooling experience? 

CLARK: Yes, there is so much to say about that. My schooling is unique in that I didn't start to be mainstreamed until third grade. Then between third grade and sixth grade, I did sometime a week in public school, and the other part of the weekend at a special regional school where I didn't have many intellectual peers. You know, there were other disabled people, but they were not at my intellectual level. Then in public school, I was the only disabled person in my class all through junior high and high school. 

MIKKELSEN: I was actually not integrated. They took me out of the classroom and put me in a trailer with-- I was pretty nonverbal because, as you know, spastic CP takes a lot of coordination to talk. My mother is a speech therapist, so she would work with me, but still, I wasn't a talker and my writing was not great, so they had no idea of what was going on upstairs. They put me in a trailer with the intellectually disabled people who-- I'm a very small person and they were very big kids. 

I spent my spastic years being very scared in a trailer in school. Until I finally told my mom, no. In ninth grade, I said, "No, this is it. I'm done." In ninth grade, I wanted to prove myself so badly that I was on the honor roll integrated into mainstream public school. Whereas before I was in a trailer with a lot of kids that were banging their heads and acting up and it was quite traumatic to be in school. 

CLARK: I wanted to add a couple more points if I could. One is that because of my experience in the school system, I thought until I was in college I was the only person like me who had dreams of a normal life. A family, a job, et cetera, et cetera. I thought, no one else. I thought I'd be the first, but I got to Berkeley, and I found out how wrong I was. The other thing that I wanted to say is we went out to Berkeley when I was accepted. I remember vividly someone telling me that an asshole in a wheelchair, he's still an asshole. That was such a foreign concept to me. The point of that is saying the wheelchair or disability really has no impact on the person. 

MIKKELSEN: I grew up without needing a wheelchair. I was mobile. I could run, I could ski, I could hike, I could do all those things up until about seven years ago. A CP is just this huge continuum of range of disability. Just because we all have CP it's going to present differently for each of us and I think that's important to point out. As we age, we will age differently. I was talking to David and David experiences no pain. Right now I think the greatest part of my disability is chronic pain. It's presenting very differently as he ages. We're five years apart. He's younger than I am so I've been in pain for 20 years and he experiences little pain. When I was younger I experienced no pain at all, so it's a morphing disability. 

SIGMOND: If I may add when people ask me if I have any pain, I say, "Well, I don't have any physical pain." 

MIKKELSEN: I'm sorry, I was talking about physical pain. 

CLARK: Yes, I know but I can say, "No, I just cause pain." 

MIKKELSEN: "I just cause pain." [laughs] David, you do not cause pain. 

WELLS: Great conversation. We could go on for hours just on these topics. I question about when we were younger, especially in the times that we grew up, we were used as Guinea pigs in surgeries and procedures. I'm going to ask both of you but I'd like to start with David. How has that affected your employment later in life if at all? 

CLARK: I really need to defer to Whittier on this one. I've been lucky in that the only surgery I've had is for a burst appendix which had nothing to do with CP, but I know Whittier's story is very different, so taken away. 

MIKKELSEN: I had a surgery. My mother was quite young, so she didn't really question the doctors on how it would affect me. I just found out last year that my life expectancy back then when I had surgery at seven years old my life expectancy was 45. That's what they projected. Obviously, I'm 57 now, so I've outlived their projection. What they did because I was able to walk and I had the toe in gait that many CPers have. What they did was they cut my femur at age seven and they twisted both legs outward. Then they lengthened my Achilles tendons at the same time. When I was seven I was in a body cast from my armpits to my toes for about three months and that surgery did straighten out my gait. 

Now that I'm an older adult and our bodies differently than most people I've had to have two hip surgeries. Because of the surgeries in the past, my hips were deformed by those surgeries. My more spastic side is my right side so having that hip replacement they had to turn my leg back inward to the birth position. Now I have one leg inward and then it came time eight months ago to do the other leg. I didn't know where to go. I had the first one done about four and a half years ago. I was not happy at all because I couldn't walk. After that I just couldn't walk. I didn't know who was going to do the second surgery. 

I had done research and nobody that I came across had ever had my surgery from when I was seven. All the doctors that I saw had never even seen it. I was getting ready for the surgery because I was bone on bone and I was in pain nonstop. I decided to go to physical therapy and my physical therapist said, "Would you rather hate one guy or two guys?" I decided to go back to the guy that replaced my right hip because he had been inside and he knew what it looked like and he ended up doing a fantastic job on my left leg. The thing that he did wrong on my right leg was go in through the back which cut some muscles which my brain couldn't rewire. 

I think that was directly related to just neurologically the CP just couldn't rewire that glute there. My leg is in more than that. I've had neck surgeries that have to do with the tightness of the muscles and the fusion that I had done was more to prevent getting hurt. It wasn't because of pain. It was more if I fell I would probably break my neck the way it was. 

I got a fusion and my neck still hurts from that 10 years ago. It's the muscles. Again, I just think that as CPers we don't rewire very easily, so any cut that happens has to be very well thought out and very carefully discerned before making that choice. Because even though pain relief might be offered to most people for us it might look and feel different. That's my two cents on surgery. 

SIGMOND: Thank you both. Whittier, I love this story about how you got back into a photography and I think it says so much about the disabled experience. Can you tell that really briefly and then we have a final question for both of you? 

MIKKELSEN: I didn't go into photography on purpose. I was recovering from my hip replacement four years ago. I found that I was able to walk in the woods, that I would get scared of concrete because of the fear of falling. If I fell in the woods, I'd be okay because it's a soft landing. What I found when I was passing people, especially with dogs, they would always say, "You go first." I'd be scared to go first because they had dogs and they're unpredictable. 

I would always ask them to go first. It was always this constant back and forth, "You go, you go, you go." Then finally, I just started pretending to take photographs. I would just duck into a bush and take a photograph. Then they would go. I didn't have that back-and-forth confrontation. That turned into taking pictures, finding colors in the woods, and walking slowly. From there, I just started seeing the world a little bit differently. Moving slower and looking for color. People thought my photographs were pretty cool. [chuckles] I started showing them. I show all around Tampa Bay now. It's not a profession, it's more of a fun hobby that I do. It keeps me moving and in the woods. That's how I came across that. 

WELLS: Thank you, Whittier. We want to ask one final question the both of you. David, first I'll ask you, and then, Whittier, can you follow up with the question? What would you tell others with disabilities who are considering joining the workforce, but are concerned about how that could impact their daily lives or even their financial situation? David, can we start with you? 

CLARK: Yes. I'm afraid, it really depends on the state you live in. I'm very lucky that I live in Massachusetts because they have a program where you can buy into Medicaid so your premium is determined by your income. They give you durable medical, PCAs, all kinds of common Medicaid coverage that you would never get from private insurance. Unfortunately, I don't think every state offers such a wonderful program, but I've been extremely lucky. 

I was on SSDI through college and looked at it as a way to get through college. I got off SSI a month after graduation. Then except for a couple years in the early 2000s when I was freelancing, not finding work and I had to go on SSDI, I've not been on Social Security benefits at all. I guess my point is it can be done. Figure out what programs are available in your state. I know nothing about California anymore. 

WELLS: Whittier, can we have your thoughts about the same question? 

MIKKELSEN: I'm going to answer it from-- right now I'm on SSDI. I don't think that I could be accountable to work because of my pain level. Back when I was working and back when I was interviewing-- I think it's important for people to know that they can ask for accommodations. There was this one time when my job changed, it changed a little bit. Emergency services, clinicians were going to homes, which I think they do now, and ERs. 

For me to go into a home is dangerous. I don't know if there's a hand railing, I don't know how psychotic the person is that I'm interviewing. I don't know if I'll have to run. There were so many ifs in my brain that I just was not comfortable doing home visits by myself. I went to my boss after thinking about it, and she understood. She made the accommodation that I would only do ER visits. I'd be the clinician that only went to the ER or to the jail. I could do the jail just where there was security so that I wouldn't get hurt. 

A lot of people don't know that they can ask for those accommodations. A lot of people also don't know that when they're interviewing, the person interviewing cannot bring up or ask anything about your disability. I ran into that situation when I was interviewing once. I didn't quite know how to answer it because I'd been working for 10 or 12 years as a master's level person. 

He was this guy asking why I walked differently. He was acting like I got the job. He gave me a full tour of the hospital, he introduced me to all the bigwigs. He said, "Oh, you'll do fine, you know the job, you've been doing it for years." Then he asked me what my disability was and I didn't get the job. Was that discrimination? I don't know. Discrimination is hard to pinpoint. That was really the only time that I felt like there may have been some discrimination in hiring for me. I guess the takeaway is that speak up for yourself and don't be afraid to ask for what you need. 

SIGMOND: Well, on that note, I want to thank both of you so much for coming on. 

MIKKELSEN: Thank you for having me. 

CLARK: It's quite an honor. 

WELLS: That was our conversation with David Clark and Whittier Mikkelsen. David is a systems designer in the digital research applications team at Mass General Brigham. Whittier is an artist in nature photographer. You can see some of her work on her website, whittierphotography.art.

Before we end the show, I just want to remind folks here in Northern California that FREED is hosting a fundraiser with the Comedians with Disabilities Act on October 16th at 7:00 PM at the Center of the Arts in Downtown Grass Valley. If you've listened to Disability Rap last month, you heard our interview with Nina G, one of the comics who will be performing on October 16th. Tickets are still available. For more information and to purchase tickets to the show, go to FREED's website freed.org. 

That does it for the show. Disability Rap was produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org to listen to past shows, read transcripts and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching disability rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED and we're distributed by PRX, the Public Radio Exchange. I'm Lindsey Wells with Carl Sigmond for another edition of Disability Rap. 

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