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Jessi: So you are officially THE Ms. Wheelchair America 2008. Can you give me a brief overview of the Ms. Wheelchair America competition?

Kristen: Sure. It’s not a beauty contest. It’s a competition to select the most articulate spokesperson to represent the disability community, which is 52 million Americans.

Jessi: Massachusetts has a history of producing winners. Autumn Grant came from Massachusetts, correct.

Kristen: Yup, she was last year’s winner.

Jessi: So, when did you decide to first run for Ms. Wheelchair Massachusetts and what was that process like?

Kristen: I got an email last March from another friend who is in a wheelchair, and it was asking for people to try out for Ms. Wheelchair Massachusetts. I had never heard of the competition, and at first, I just kind of laughed it off, like, oh yeah, I’ll be the next Ms. Massachusetts. Then, I read the information, and I found out that it wasn’t a beauty contest. It was a platform for advocacy and to communicate the needs of people with disabilities to lay people, business people and people in political office, so I figured it would be a really great chance to advocate on behalf of people with disabilities, and I have a long history of advocacy and outreach and achievement, so I figured I may be a good person. So, I entered the competition and, to my great surprise, I won because there were four other women who also competed, and they were extremely educated, well-spoken… Really any one of us would have been a great Ms. Wheelchair Massachusetts.

Jessi: So, what did it feel like when you were crowned Ms. Wheelchair Massachusetts, among this group of well deserving individuals?

Kristen: Well, first of all it came down to, there were two runners-up and the winner, and when I didn’t get called for the first two runners-up, I really though, oh my god, I’m not even going to place. I was really disappointed. [Going into the competition], I either thought, I’m going to place or I’m going to win. [At that moment], I thought there’s no way I’m going to win, so I thought, I’m not going to place, so I was really disappointed…And then, when they called my name, I was just totally floored. I was just shocked, but I was really happy because I thought I had wanted to get involved in this type of work for a long time, this type of volunteer work. I do a lot of volunteer work in the community. I’ve run blood drives for years, and I do volunteering at community road races and fundraisers, but I hadn’t done a whole lot of advocacy on behalf of people with disabilities. I had, but I hadn’t done it as a leader in the field, so I figured it would be a good chance to show my leadership skills and abilities and just to get out there and spread the word.

Jessi: That’s incredible. That’s awesome, and just from talking with you a few times, I can see how articulate you are and you must get your way on a lot of things when you go into these situations.

Kristen: Well, the thing that I chose for a tagline for my competition platform was, “Leading by Example” because I had a spinal cord injury when I was 15, that’s almost 25 years ago. Like I said, I had never been a leader in the disability movement, but I’ve always gone to different events. I’m on different committees. I’m on an access advocacy group with the Boston Center for Independent Living, and I’ve done a lot of things like that, and I figure that just by being there and being a part of these movements and also living my life the way I do, I lead by example. I went back to high school, I went to college, I’ve been gainfully employed since I graduated from college, I got married, I learned to drive… So, all the things I do, I figure, if I can do them, other people can do them too. So, I like to be… I always like to be kind of a quiet advocate or just an advocate who went about her daily life, but just by doing that, leading by example and showing other people that, like I said, if I could do it, they could do it too.

Jessi: Right, and now you are leading by example, but at a much grander scale, on the front line…I think it’s wonderful.

Kristen: Exactly.

Jessi: Now, one of your other platforms [as Ms. Wheelchair America] is physical fitness for people with disabilities. How did that become a passion for you and what are you doing within that [to translate that platform into action]?

Kristen: Well, actually, it all kind of came together for me at the same time. In late 2005, I had minor surgery and I just started to feel the effects of my disability over the years. I’ve been in a chair for over 20 years, and I was getting a little bit older, and I just started to feel the aches and pains that come along with having a disability. So, I decided that I wanted to get proactive about my health. I had always been conscious of it but never really proactive. At my husband’s urging, I joined a gym because he had gone to that gym his whole life. It’s a local YMCA, and they have a great program for people with disabilities. It’s called a partnership program, and I had heard about it. He had told me about it for a long time, and I actually knew a few people who went there, I was just never motivated to do it myself, plus the demands on your time, with work and school and family, I just didn’t make it a priority, but like I said, in late 2005, I decided, I really want to get proactive about my health and take control of the next phase of my life, health-wise. So, January 2, 2006, I went down to the Y and signed up, and over the course of the next six months to nine months, I lost 30-40 pounds, I started working out 3-4 days a week, I do the FES bike. Are you familiar with that?

Jessi: Yes, I am. That’s a great machine.

Kristen: Yup, I do that, I do Nautilus, I do other aerobic exercises, yoga, and I do wheelchair aerobics.

Jessi: You even teach a class now. Is that correct?

Kristen: Yes, at Spaulding Rehab Hospital where I do peer mentoring, I lead a weekly wheelchair aerobics class for inpatients, and it’s hugely popular. People are so receptive to it, and it’s a workout, I’ll tell you. They have two DVDs that we use as an accompaniment, one is for tetraplegics and one is for paraplegics, and sometimes the tetraplegic is more of a workout than the paraplegic one. It’s just really great to see people doing as much as they can do. My message really is about empowerment more than inspiration because I think sometimes inspiration can have a negative connotation to it, like, we don’t want to be poster children or seen as like a hero, but I just want to try to empower people to say, “We can take control of our lives. We can lead full, active, happy, healthy lives. We can do everything we wanted to do. We might just have to do it in a different way.” So, my message is really about empowerment.

Jessi: Absolutely, and I can hear that in everything that you’re doing. You must be empowering, well now on this scale, hundreds and maybe even thousands of people to get involved and to take those New Year’s resolutions, like you did, and make it count.

Kristen: I really hope so, and I’ll tell you it was not easy. It was really, really hard work, and I’m proud of everything that I accomplished because if you had asked me two years ago if I could ever be where I am today, I never ever would have believed it. Just for me to look back and see all that I’ve accomplished is even surprising to me. Even though…

Jessi: You’ve even empowered yourself.

Kristen: We have an inside joke in my family. I like to call myself highly motivated, my mother likes to call me driven, and I don’t really think that it’s driven. I’ve always considered myself highly motivated, but like I said, even when I would look back and think, “Wow, with the combination of healthy diet, regular exercise, and just making your health a priority, you really can accomplish your health goals.” And it’s not about looks, or anything like that, it really is about feeling better. I do think when you look better, you feel better, you feel more confident, but I really think that getting involved in a physical fitness routine also helps combat isolation. There’s a whole group of us who work out at the gym. There’s probably 20 of us who work out there on a regular basis, and now, they’re all my buddies. If someone takes a week off, we’re like, “Oh, where’ve you been?” It’s like a social event also. The camaraderie helps to just keep up your exercise program, and we set goals for ourselves. The past few years, we’ve done an event in…coordinating with the Boston Marathon where we try to pedal the Boston Marathon on our FES bikes. We try to pedal the length of it, in tandem, so we all try to add up to 26 miles.

Jessi: During the time that the Boston Marathon is going on?

Kristen: Yup, on the same day! So, we’re trying to do it this year. We try to make race competitions among ourselves to try to get us all to the next level, and this year we’re going to try to introduce some prizes, just to up the ante.

Jessi: That’s very cool. You know, it’s the same thing as an able-bodied person going to the gym, needing that motivation of a workout partner, wanting goals to push themselves. Why would it be any different?

Kristen: Exactly, and that’s what I tell people, and I encourage so many people to go to this program, so many people in my local area because it is just so positive, like I said,… To me, I’ve just always been a positive person. The only time I get depressed or down is when I feel isolated, and this just really helps with combating isolation because, like I said, it’s a positive experience. You go there a couple of times a week, and there’s people who know you, who look forward to seeing you and seeing your progress, and it’s just a real positive spirit.

Jessi: This is going to be a really tough question, but what has your favorite experience since you’ve been crowned Ms. Wheelchair America?

Kristen: That is a tough one.

Jessi: Because I know you’ve had a lot of experiences…

Kristen: Since I’ve been crowned Ms. Wheelchair America?

Jessi: Yes, we’ll keep it to just that because I know you had a whole other year of things before that.

Kristen: I would say my favorite thing I’ve done so far is when I went skiing in South Dakota because I live in the Northeast, and I hate the cold weather. So, when I heard about the trip to South Dakota, I was really interested in it, but I thought, “Oh, I really wish I was going to Hawaii or some place warm.” So, I wasn’t really thrilled about the weather. But, when I got out there, the people were so welcoming and so inviting to my husband and I. They just welcomed us right into their community and they showed us the town, they showed us how to throw it down on the dance floor, they just really welcomed us, and we had a great week.

Jessi: That’s awesome. It’s so exciting, I’m sure, to be able to participate in all of these experiences around the country and meet such amazing people as well.

Kristen: Yeah, I gave a keynote speech at their awards banquet on the final night, and that’s what I said to them. I said, “You guys don’t even need me to talk about empowerment. You’re out here doing it, and it’s such a thrill for me to come and see that people are doing it. They’re living their lives as if living their lived to the fullest. They’re on the ski slopes, they’re in the casinos, they were out in the pubs dancing on the dance floor, and it’s just so wonderful for me to see that.” It just makes me feel good about the whole disability community in general.

Jessi: Sure, sure. Now, I know you said earlier that Ms. Wheelchair America is more like a platform for advocacy than Ms. America, but do you feel that there’s any place for women with disabilities in the traditional Ms. America or Ms. USA Pageants?

Kristen: That’s a real interesting question. If it’s not about looks or beauty, it should certainly be open to everybody. I know there is a difference between Ms. America and Ms. USA. Ms. America emphasizes more of scholarship and education, and the Ms. USA is more of a beauty pageant. So, I would think if we could make inroads anywhere, it would be with the Ms. America Program. Ms. Wheelchair America has actually thought about trying to get involved or get some leadership advice from Ms. America, and it would be great to someday see a person in a wheelchair as a Ms. America, but another interesting side-note, which you can definitely [mention] is that when I was in California for the Rose Parade, this year, they had two girls in wheelchairs who tried out for Rose Queen, and that’s the first time they’ve had anyone tryout who was physically disabled to be the Rose Queen, and I think 10 years ago, that wouldn’t have happened because people wouldn’t have felt like they had a place there, and now, I think that society and organizations are just so open and aware of people with disabilities that it’s a great thing and it’s even expected, like you would almost be surprised not to see somebody in a wheelchair trying out for the Rose Queen.

Jessi: Did they make it?

Kristen: They didn’t make it, but it’s a start.

Jessi: It’s a step. It’s a step.

Kristen: It’s a step in the right direction.

Jessi: That is very cool, and to see it affecting younger kids and adolescents…

Kristen: Exactly, at the high school girls, and sometimes,…I had my injury when I was in high school, and I had a tough time back then because when you were in high school, you wouldn’t leave the house if you had a bad hair day, nevermind if you were suddenly put into a wheelchair. You know, it was a really difficult adjustment at the time, but nowadays, that was before the ADA, and nowadays, I look back and I look at just the changes. Really, the paradigm shift in attitude, and I know we still have a long way to go, but I see kids today who have accidents in high school and they’re brought right back into the school, they’re brought right back into the community, they retain their friendships, they retain their relationships, and it’s a lot different than it was when we didn’t have access to things like that. Like, I couldn’t really access my high school. It wasn’t accessible. I couldn’t access a lot of shopping malls and buildings, movies. I remember if there were ramps anywhere, they were literally at the back door, and that’s just discouraging when you can’t even enter a building with your friends. Everything has to be a special arrangement, and that’s just discouraging to a kid.

Jessi: Big time, especially a teenager who doesn’t want to stand out.

Kristen: Who doesn’t want to stand out, exactly. I see a huge shift in that, and that just makes me thrilled, so I was thrilled to hear that two girls, two teenage girls tried out for the Rose Queen because that says a lot about their self esteem and their positive body image, and their positive self image. Good for them.

Jessi: Absolutely. Well, you read right into my next question, which was about your experience being injured and transitioning to where you are now, where you are so active and so successful. I know it wasn’t always easy. Can you tell me a little bit about that experience after you were injured and finding yourself again?

Kristen: Yup. I see it every day because I work as a peer mentor at Spaulding Rehab Hospital, so I see people whose lives have just been devastated by this injury, and I try to tell them that this is the toughest time. I remember my rehab. I didn’t even really work that hard in rehab because my goal was just to go home. You know, I was just a kid, and I just wanted to go home and be with my parents and my brothers. I have two brothers. So, I didn’t really get a lot out of rehab. They did a great job with me, I didn’t do a great job in return. But, when I look back, I really wish I had made more of my rehab. I try to tell people that, like this is the one time where you’ll get intensive therapy, and I know it’s tough, but I just try to help people see the big picture, like this is going to be the toughest time you’ll ever go through. Once you get home, then things rapidly improve. You’ll be back in your own clothes, you’ll be back in your own bed, you’re back with your own family and friends, and really I credit my family and friends for pulling me through the worst of it because they never left my side. I had up to 20 visitors a day in the hospital because I was a kid, you know. All the kids from my high school would come and see me, and my brothers were there all the time, and my parents, so I really see people who have strong family support, and I really see the difference it makes in their success. So, I would say that that’s probably the thing that got me through the tough times was my family and friends and just the emotional support that people need.

Jessi: And what motivated you to become, you know, not just an ordinary individual anymore, but an active and above, you know… a leader?

Kristen: Exactly my experiences were what motivated me because when I was in the hospital, I was a 15 year old girl. I was in a room. It was more like a ward with three guys. There were no other girls on the floor. There were no peer mentors. If I had had someone to come in who was in a wheelchair and talked to me and tell me all the things that I would be able to do, and tell me that the future was bright, that there was a lot of hope, that there was a lot to look forward to, that would have changed my life right then and there. But all I got was negative feedback. I didn’t have anyone to follow, no leadership, no peer mentors, no peer visitors. Those programs didn’t exist back then, and that’s why I just think they’re so important, and that’s become one of my platforms as Ms. Wheelchair America is just to develop and to talk about the importance of peer mentoring because we need to support these programs. We have a great program here in Massachusetts, and I hope every state has one because people need other people in the same situation. You know, it’s not something that a doctor or nurse can tell you, you really need to talk to somebody who’s been there and done that, and you need to see by talking with these people that there is hope, there is a future, there is still life. Just because you’re disabled doesn’t mean that your life is going to end. And that’s what inspired me because I had nobody to look up to.

Jessi: Wow, wow. That’s awesome that you came from not having that to say, “You know what? I need to be the one giving that. I need to be the one there for them.”

Kristen: Exactly.

Jessi: Now, I know you’re also a writer and an aspiring author.

Kristen: Yes, that’s my passion.

Jessi: That’s your passion! Tell me about your passion.

Kristen: Well, I’ve always loved to read and write. I was an English major in college, and my mother was an English teacher, so she instilled in me a great love of literature at a young age. So, I actually met my husband in college. We were both English majors, and he set-up a mock interview. He met me in the disabled student center and he said that he wanted to interview me for a story he was writing on a girl in a wheelchair, but it turned out I found out later that he had just used that as a rouse to try to get to know me and ask me out on a date. So that was always a joke between us. He never got the story, but he got the girl. So, anyway, we do a lot of writing together. He does a lot of writing groups. I kind of just stick to writing with him. We do writing together, and we feed off each other. We read each other’s work and, you know, from everything I read in fiction, I don’t see a lot of women in wheelchairs as lead characters, as protagonists or heroines. I read a lot of chicklet and romance, and you know, a lot of times, you will have somebody who’s blind or somebody who’s deaf as a romantic lead, but I’ve never seen a girl in a wheelchair with all the books I’ve read, so I figured, this has to be another place where we need an example because people need to know that women in wheelchairs still are involved in life, they still want to date, they still want to have sex, they still want to have families, they still have lives. And also, as a woman who’s disabled, I want to read about somebody like myself. I want to read about a woman in a wheelchair who’s a jetsetter or who’s a vixen or, you know, something exciting and fun. It’s a little bit of diversion from your ordinary life and it’s just something that I think is desperately needed.

Jessi: Absolutely, so you’re writing it.

Kristen: I’m writing it. I have a… I finished a series in draft form of three novels, three romance novels, starring women in wheelchairs, three different characters in each book, but I have them, kind of labeled under the name of the special needs series, and they’re in draft form. Like I said, I need to revise them and get them into final form, so I haven’t submitted them yet for publication, but I hope that when I get to that point, that publishers are willing to take a chance because I think it could be a whole new market because so many people with disabilities, you know, are homebound and they like to read. Why wouldn’t they want to read about someone who’s like themselves?

Jessi: Or someone they could aspire to be.

Kristen: Someone they could aspire to be. Exactly!

Jessi: That’s awesome. Well, I definitely look forward to hearing..

Kristen: So many people I’ve mentioned it to, even people who aren’t in wheelchairs, say, “I’d love to read that,” and then you think nurses, doctors, people who work in rehab, a lot of people know someone who’s in a wheelchair even if they’re not in a wheelchair themselves, so it’s just an interesting aspect of human life, I think.

Jessi: Absolutely. So, you’ve mentioned your husband now. You’re just segueing right into my questions, it’s amazing. Was it difficult for you to find love having been injured while you were in high school, which is a typical dating period, and then going into college…was it difficult for you or was it as easy as him saying, “hey, I want to interview you, boom.”

Kristen: You know, it had it’s ups and downs, I would say. Before my accident, I was mature for my age, so I had had boyfriends, even though they were, like, you know innocent enough being just 15. You know, I had been used to interacting with boys and then after I had my injury, a lot of the boys that I was friends with came to visit me, so that made it a lot easier, but I didn’t really start dating until I went to college because I don’t think I was open to it as far as having the self confidence and really the independence because when I started in college, that’s when I started driving my van, that’s when I got my power wheelchair. Before that, I was in a manual chair that I couldn’t push that well, and I couldn’t really get out on my own that much, so once I got out on my own and started meeting people, I found people were just really receptive to the whole thing, and that really opened my eyes to think , like, wow! It really gave me a lot of self confidence to think, wow, people don’t really see me any differently. People just see me. So, like I said, it had its ups and downs. Right after my injury, in my teenage years, I’m sure I was down on myself. I don’t remember it being like a crisis point or anything, but I’m sure I just wasn’t ready to go out and date, but I always had a lot of guys as friends, so that made it easier.

Jessi: You had two older brothers, also.

Kristen: When I met my husband, yes [I had] two brothers and they always had friends over, so I always had a lot of boys in my life. When I met my husband, it’s definitely difficult to start dating, and, you know, knowing when to tell them about your different abilities and disabilities, and I talk to a lot of the girls who I mentor in Spaulding about that because, you know, some of them are in marriages, and then, some of them are teenagers who are just dating. You know, so you have two different sides of the equation, and it’s an issue, no matter what point of view you’re coming from, so that’s one thing that always comes up in the peer mentoring session is, you know, relationship issues.

Jessi: Of course, and what about children? Have you thought about children? Do you see a lot of people in the same situation as you having children?

Kristen: Yup. Definitely people with my level of injury can have children. As far as I know, most levels of injury can and do have children successfully. We’ve thought about it and we did try, and we’re still in the phase of thinking about it, if we should maybe try again, so we’re still open to it.

Jessi: That’s cool, so I know you’ve said so many things about empowering people and helping by example to get them to be as active as they can. How would you describe yourself as a role model?

Kristen: I would say I was born under a happy star because I’ve always had a very positive personality and I’m very upbeat, and I’m a people person, so I think I’m a good fit for Ms. Wheelchair America. Now, I don’t think everybody should aspire to be Ms. Wheelchair America because it wouldn’t fit into everybody’s lifestyle. It’s a lot of work. It’s volunteer work. There’s no pay for it, so I just happen to be in a good position in my life where I had time and I have the support of my husband who accompanies me on the trips and things like that, but I would just say to people that, even if you’re not aspiring to be Ms. Wheelchair America, just set goals for yourself and that’s my M.O. I was always a goal setter, and that’s what I tell people in rehab too. Even if it’s the smallest goal, as long as it’s a step in the right direction, you know, I encourage them to have short-term goals and long-term goals because everybody with a spinal cord injury [their] long-term goal is to be able to walk, and I say that’s a great long-term goal and don’t ever give up on that, but in the meanwhile, you know, make short-term goals. Have a goal that you want to go home, have a goal that you want to go back to work or school, have a goal that you know you want to get back out in the community and see your friends again, and once you meet those goals, that really helps build self confidence and self esteem.

Jessi: Of course. So, what’s next for you? I know that the Ms. Wheelchair America 2009 competition will be in July. What happens then?

Kristen: Well, I‘d like to…I am interested in pursuing a public speaking career and also, I’d like to concentrate on writing my novels full-time.

Jessi: So, no more full-time work.

Kristen: Well, I also edit a magazine full-time. So, I’ll still do that. Oh no, I’d keep doing that. I write articles for the magazine and I get to read other people’s articles, so I love that, but I like to be busy. I’m a person who does better with more on her plate than less. It keeps me motivated.

Jessi: I can definitely see that. Well, thank you. I really look forward to writing this article because you’ve shared so much information. It’s just wonderful. I can see how you must impact so many people’s lives.