Mayo Clinic Employee Experiences: On joys and challenges of living life with a disability

By In the Loop • December 3, 2019

Mayo Clinic is a unique place: the culture, the values, the people. "Mayo Clinic Employee Experiences" explores the experiences of Mayo Clinic staff as they navigate life personally and professionally. Sharing these experiences increases understanding of others and ultimately contributes to finding connections, belonging and inclusion at work.

In this episode of "Mayo Clinic Employee Experiences," you'll hear from Barbara Hicks, an administrative assistant, and Ena Whitelaw, a certified clinical research coordinator, as they discuss their experiences living with a disability. Hicks has been in a wheelchair all her life. Whitelaw has experienced progressive vision loss since her late teens. They talk about the challenges, joys and benefits of being open with colleagues about their disabilities.

Listen as they discuss their journeys and reflect on their experiences:

Read the transcript, edited for length and clarity:

HICKS: It took me years to be able to prove that as a person in a wheelchair, I could be with everybody else.

NARRATOR: In this episode, you'll hear Barbara and Ena discuss how their disabilities have impacted their lives personally and professionally.

HICKS: I was born with a brittle bone disease called osteogenesis imperfecta. I've been in a wheelchair my entire life. I use a manual wheelchair, and it's resulted in a lot of fractures. My legs are kind of my Achilles heel, so to speak, and I've had about 100 fractures.

WHITELAW: I have a physical disability, as well. I was not born with it. I guess you could say I was predisposed to it. It is cone-rod dystrophy. The cones and rods are cells in the retina, which is the back of our eye. I have a genetic mutation that is causing those cells not to function properly. Therefore, I have experienced some visual acuity loss. It didn't manifest itself until I entered my late teens, which is when I was diagnosed with it. It came as a shock because I didn't know how to take it or what it really meant for the future. Unfortunately, there's no cure for it. I am managing it in a way by using assistive software to help me on the computer. I am learning anything that I can about what technology can offer me to help me at work and outside of work to be able to overcome this condition.

HICKS: A lot of things have changed with the Americans With Disabilities Act of 1990. Prior to that, it was much more of a challenge — not just because people sometimes look at disabled people as though we're going to take a lot of time off or we're not going to be able to do the job without all of these special things. Before the ADA was passed, one of the big issues I would have was whether or not it was actually accessible to me to be able to even get in to places. I have examples of going to a job interview and there was handicapped parking, but then there were four steps to get in the building. And there was no ramp. At that time, you don't know any different. I think that that's kind of how it is for me. I don't know what it would be like to apply for a job and not have the wheelchair — and not get the looks that come with it when you go into a job interview and they realize that you're in a wheelchair. It is kind of one of those shocked expressions. You're always trying to overcome it. One of the things I will say is that I didn't experience that at Mayo. It was one of the reasons why when I was offered the position at Mayo, I took it so quickly. I didn't feel like the odd man out or like they had done their good deed for the day. It seemed like it was no big deal, and I liked that.

WHITELAW: I can relate because I have had a lot of support throughout my career at Mayo. I feel like there's a lot of respect — not just from supervisors, but also from my co-workers. Being in an environment like this, I feel like the support is overwhelming sometimes because I do know that people care.

HICKS: That's awesome. That's kind of how I felt about it, too. You're not stigmatized I guess as much here as I have been in the past. Do you find it difficult to check the box that says, "I am disabled?" Sometimes I have an internal debate about it.

WHITELAW: When I started at Mayo, my vision was much better than it is today. It was shortly after that I was diagnosed, and I didn't know how to disclose it. I was very afraid to disclose it. I was spending a lot of time coping with it in my personal life. Once I got that under control and got to the point where I could talk about it without breaking down, that is when I started getting more confidence. I have come to the conclusion that in order for it to be a good fit for my employer and for me, it has to be disclosed. The only way that my employer can help me in the way that I can be successful at what I do is if it is disclosed. I believe the support can only come with disclosure and with talking about it, and being able to ask for things, which I sometimes struggle with.

HICKS: I do find that to be a difficult thing to ask for help or ask for additional assistance to do my job. I grew up in a school district that wouldn't take disabled kids. It was the '70s so I went to school in a neighboring school district. There's a little part of me that always feels like I have to prove something. I'm getting better at it. Here I've asked for my cubicle to be widened a little bit so that I don't bump the walls when I go in with my chair.

WHITELAW: I can relate to that, absolutely. I feel the same way. That applies to my personal life, too, so it's only natural that when I come to work that that continues.

HICKS: I am the queen of trying to find unique ways to be able to do things. I've used tongs to get wine glasses out of our cabinets. That's sometimes very successful. Other times, it involves a lot of glass cleanup. So my husband's always going, "You know, just ask" and I'm like, "But I don't want to bother people." I'm still doing it, and we periodically have to buy new wine glasses.

WHITELAW: How long have you been married and what kind of support do you get at home?

HICKS: My husband and I have been together for 25 years. My husband is not disabled. He helps me if I'm having a bad day. Sometimes I'll have pain or issues that relate from my osteogenesis imperfecta. He's never known me any different. He doesn't allow me to say, "Oh, no — no I can't do that. You'll have to do that for me." He's very much of the "We're both going to paint this room," type, and then I'm painting a room. He doesn't let me get away with anything.

WHITELAW: That's amazing. I also am married. My husband is also not disabled. He is amazing. He sounds just as great as your husband. His support is just tremendous. I would not be as confident and I wouldn't enjoy life as much as I do if it weren't for him.

HICKS: That's awesome. Do you have any kids?

WHITELAW: I have two little boys. My oldest is almost 5 and then we have our youngest one, who's turning 1. They are our pride and joy. I love being a mommy and a wife. Life could not be more beautiful.

HICKS: I don't have any kids, unless you count furry children. I do have two shelties. They're like the little collies. We also have a cat who thinks that he's also a sheltie.

WHITELAW: It sounds like your house is full of love.

HICKS: Love and no steps.Since you've been working at Mayo, have you had any instances that surprised you since losing your visual acuity?

WHITELAW: Going through this physical change and struggling personally with how to be at work with it, I would say there have been some situations that have been challenging. With every challenge, I feel like I learn more about myself. My condition definitely is something that is hard. I'm not trying to paint a picture of it that it's not hard. Do I wish I didn't have it? Absolutely. But by the same token, I feel like with it came so much good. It has forced me to truly think about myself and become stronger, and think about what it is that matters to me and what it is that I want out of life. At work, I would say of the few instances that have been challenging, I feel they might have happened regardless of my disability. A lot of the things that I face or the challenges that I have are really no different than what everybody faces. It's just life.

HICKS: I agree. If there were a way to go back in time and there were a cure, would you take the cure and not have the challenge that you have now, or would you not?

WHITELAW: I don't think that I would be the person that I am today if it weren't for the challenges that I have had and the things I have had to deal with that came with this condition. If there is a cure in the future, I'll take it. But I wouldn't go back in time. I think everything that has happened has happened for a reason, and a lot of good things are coming my way for the future.

HICKS: I'm with you. If I could go back in time and not have it, I don't think I would change it. I am who I am because of it. Sometimes I hate it. But it's made me really resilient. It's made me look at things with a sense of humor that I'm not sure I would have had if I didn't have to go through some of it. But if there is a cure today, I would do that.

WHITELAW: I can definitely relate to you, although you've been faced with it your entire life and I haven't. Bottom line is we're both having to adapt.

HICKS: I've always known the chair. I don't know anything different. I don't know what it's like to walk, so I don't miss it. I think for you, it's got to be a lot harder, simply because you know what you're missing. Kudos to you. I don't know that I could go through that.

WHITELAW: You definitely are touching on something that is hard. The only thing that I can say is you think of patients who are experiencing the same thing — where they had the ability to do something and they can't anymore. The beauty of it is that although I remember what it was like without it, it makes you appreciate every day and everything in your life. I am a pretty happy person. I realize the value of being happy and what really matters in life because of going through this and something being taken away — something that most people probably couldn't imagine living without. It's a different mindset — a different world that I am entering. I continue being productive and living a happy life. I do not let this condition take over and impact me in a negative way.

HICKS: I can relate to that. I'd love to know what it feels like to run. It looks like it's exhilarating. There's the wind in your face, and being able to get on a horse or something. Those are things that would be really cool — and not having to plan everything to make sure that you can get into a building. There's a little part of me that is a little bit jealous of people who can at least remember what that's like. You learn to accept it, and you do the best that you can.

For co-workers to support us — if you have any questions about what I can or can't do, ask me. Don't assume that I can't do something or that I am unable to do something just because you think I can't. Ask me, and don't be afraid to ask me what it is I have. If your child is coming up to somebody who is in a wheelchair or has a question about it, let them ask. I've been asked all sorts of weird questions, and I'm OK with it. Most of us are. The disability community is very open for the most part about stuff like that. My advice to parents is let your kids ask, and let me answer so that they're not so afraid of it in the future. If you tell kids not to ask, then all of a sudden they're thinking that there's something so wrong about that person in the wheelchair.

WHITELAW: I don't want any of my co-workers to be afraid to ask. It is a huge part of my life and who I am today, so I want people to know about it. I want to raise awareness. Even if someone did ask and they caught me in a bad moment and I broke down, I don't want them to feel bad about it. Each time those emotions come out, it's not necessarily a bad thing. Don't be afraid to bring it up. Ultimately, it can only make it better. It's not going to make it worse.

HICKS: I think people now are so afraid that they're going hurt your feelings. If you see me and I'm wheeling along, and you offer to open the door for me, I'm probably going to let you because it's easier. Sometimes I'm going to tell you, "No." I'm OK with that, and I hope you are, too.

WHITELAW: It's been an amazing experience to just be myself, and get to the point in my life and my career where I can just focus on learning and doing my job. I am doing it the best that I can, continuing to build on the knowledge that I have and hopefully use that knowledge to take me in more fun and adventurous ways. By sharing my story and raising awareness, I hopefully am giving people strength, whether it be someone with a disability or maybe someone who has a child with a disability not to lose hope.

NARRATOR: Asking questions is a great way to get to know your colleagues, and, if applicable, disclosing your disability ensures you get the support that you need.

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