John Burke interviewed Jennifer Justice at StoryCorps for the Disability Visibility Project™ at StoryCorps San Francisco on August 28, 2014. In this clip, Jennifer Justice talks about living with disabilities, her mother having polio as a child, enduring multiple craniofacial surgeries in high school, experiencing job discrimination, finding a disability community and being inspired to become an activist.

Text Transcript:

John Burke: My name is John Burke, I’m 72. Today’s date is August 28 2014. We’re in the StoryCorps facility at the San Francisco Public Library. I’ll be talking to my partner who is my dear friend.
Jennifer Justice: My name is Jenifer Justice and I am 36 years old and we are in the StoryCorps booth at the San Francisco Public Library. Today’s date is August 28 2014. I’m talking with my dear friend John.
John Burke: Okay. What is your earliest memory involving disability?
Jennifer Justice: My earliest memory of disability has that leaps to mind is my mom being on a local news, community news, television program when I was about 3. I was at home with my grandmother watching. It was a program for, I don’t know, the segment was promoting the March of Dimes, and my mom had been contacted through phone of a friend to come on the show and talk about raising money for the March of Dimes, and she was talking about her experience as a kid with who contracted polio in 1945 or ’44, when she was about 5 years old.
I don’t remember much of her interview but I remember seeing that my mom was on TV talking about polio, and so the words came together for me at that time. She was talking about her crutch and how she used it to walk and get around. I remember what she was wearing too, she was wearing a plaid skirt and I thought she looked really good on the TV. I was really excited about it. That’s my first memory but I have many because my not only as my mom a polio survivor but my dad was a general practitioner in rural medicine.
Just being around the office I saw a lot of people who were sick or had disabilities or age related disabilities, so it was very much a normal part of my experience growing up. It was just part of the culture, part of life.
John Burke: When do you first recall learning about your disabilities?
Jennifer Justice: The first memory I have is that it was when I was at the babysitter, and I was again maybe 3 or 4. I was playing around upstairs by upstairs window and I looked down and I could see the front side lot from the window and I saw my dad and my brother coming to pick me up. I said, “Oh, hey, dad and Mark are here to pick me up.” The babysitter was really excited and she was like, she like ran down the stairs and she told my dad that I could see him and my brother from the window.
I thought that was weird, that was a big deal to them. Then I must have asked about it on the way home and I’m sure that I don’t remember this, I just remember that feeling like a little I’m from I felt like this is something that was supposed to be, just of course you were supposed to be able to see your family member from a distance like I knew that was what was the norm, but I didn’t know that my vision was so different from everybody else.
That it was like not worthy that I could see them, so that was my first inkling that I had a vision impairment or that my vision was different than others.
John Burke: How did you feel about your disabilities growing up?
Jennifer Justice: I felt pretty fine about it as a kid, it didn’t really … As a kid it was pretty much a part of who I was and as I’ve said it was something that was a part of the community. People with disabilities were part of the community, it was just a normal childhood like I didn’t really feel like I left out of anything. I have friends did all the stuff kids do. It was a really small town, so nobody really gave me a hard time. I didn’t get bullied much, much.
If I did it was like everybody I could play with my friends, but a line had been crossed you don’t make fun of somebody’s disability. I didn’t get to used very much as a kid, I think it’s probably because it was such a small town and everybody knew everybody. It was like the town of 4,000 people in Rural Alabama. I went to nursery school with all these kids and through high school.
It was okay and it wasn’t difficult until high school when I started to have surgeries, like every year or twice a year and then that was really difficult because you have to go through this by yourself pretty much. I’m happy to take prompts, or other question, really a question.
John Burke: The next one was, how did you feel about your disabilities as a teenager?
Jennifer Justice: I think I got into that a little bit, yeah.
Speaker 3: What were the surgeries for? If you don’t mind me asking.
Jennifer Justice: No, I don’t. That helps. Yeah, I had. I was born with craniofacial disorder or series of defects that included, cleft palate and bilateral cleft palate in lip. I’m blind in my right eye and I have legally blind in my left eye and I have deaf in my right ear. I think it’s part of our class of craniofacial disorders, but I don’t know exactly which one it is, it’s pretty rare. All I know is it’s really rare. When I was born, 1977, they didn’t really, there wasn’t any such thing as genetic testing.
They just treated everything by the symptoms and by eye doctor for eyes, ear doctor for ears, that sort of thing. When I first started to read was when I was 3 months old for my cleft lip and then 5 months it was like they did one side of my lip and then they did the other one when I was 5 months old. Then I had my cleft palate repaired when I was 18 months old. Then the rest of the surgeries came when I was 15, started when I was 15, and I had orthodontics from the time I was 13 to 18. I had orthodontics and I had a series of surgeries 2 or 3 a year when I was 15, 16, 17.
Then a couple in college and then the last one I had was around 2008, so I’m done. I’m very happy to be done with all of them. That was tough because you’re just in the hospital and your family is there but your friends are off doing whatever they do in the Holidays. Because it was usually at Christmas, and they were usually do it during the winter break and summer break. It was not fun experience.
John Burke: The next thing here is describe your disabilities? You have but you want to do more?
Jennifer Justice: No, I think I have, I’m legally blind, that’s life. I think that’s self-explanatory and deaf in my right ear, but I feel like it’s not such a … I have scars around my mouth and stuff, I feel like my disabilities are particularly self-evident to people when they meet me, because I don’t use a cane on regular basis. It can be confusing for people, I don’t know if it’s so much of visible and invisible disability isn’t eligible disability, I feel like I should come with it, I should hand out like a training manual or like guidelines or a map or something to let people know what else going on.
There’s a lot of stuff going on in neighborhood. That is the periphery of disability that I …
John Burke: Who were your role models growing up?
Jennifer Justice: Who my role models? I think my grandmother, my mom, and my dad. My grandmother was a great advocate for my mom when she had polio in the 40s in Rome, Georgia, she had to be treated in Atlanta and be away from home for weeks and weeks for the treatments. My grandparents had to travel by train from Rome, Georgia, so it’s about an hour to get to visit her. They can only visit once a week and she remembering how she had a stand for the servicemen that were coming back from World War II. She didn’t appreciate that too much, I don’t think she felt like her plate was pretty full with her own issues. It would be nice to sit down on the train or to see her sick kid in the hospital.
She was just a really great way of getting things done when my mom came home she organized the rehabilitation, but the pulmonary rehabilitation that the kids had to do, they had to do exercises to help them regain lungs strength and muscle strength. In the ’40s there was no physical therapist that came to your house or an occupational therapy there wasn’t anything like that. They were just send the parents home with like sheets of instructions on how to do the therapy themselves. My grandmother volunteered to be the therapist then for the kids in the area and get them all together and make sure they got their physical therapy.
That’s pretty great of her, she didn’t have to do that but she felt like she would be good at it. Yes, and she just ran with it and she also … Later on when my mom was in the second grade going into the third grade she had braces on her legs and the second grade classroom had been on the first floor but the third grade classroom was on the second floor stairs.
My grandmother convinced the principal to have the third grade classroom moved downstairs, and the second grade classroom moved upstairs so that my mom could just stay in the same room and not have to go at the stairs.
I guess that was her idea of reasonable accommodation before there was such a thing as a reasonable accommodation, and he agreed to it and my mom said the third grade teacher wasn’t too happy to move her classroom downstairs. She didn’t think the teacher like they’re very much or her having to relocate but she didn’t have to go up the stairs with her crutches and the braces.
I think she was a great role model and my mom, too, because she wasn’t ashamed of her disability or ever made me feel ashamed about it. I think that’s something that I have heard from other people like friends of mine that have disabilities. They didn’t have that kind of support and positivity or just … I don’t know not even accept things just being yourself and loving who you are, and just being at peace and thriving as a person with the disability as supposed to trying to hide it or overcome it, or whatever. All of those things that people tend to associate with disability in popular culture.
That wasn’t really part of my experience at least not ever it was growing up, and I really think I benefited from that and a great deal.
John Burke: When did you first learn about the ADA?
Jennifer Justice: I didn’t learn about it until I was in college which is pretty late considering it was past in 1990, when I was probably 12, I have no memory of the ADA being past when I was that age. I didn’t learn of it until I was in college. I was working for a non-profit that provide support for family member with craniofacial disorder. They said they might want to go to the disability studies conference that was being held in Chicago where I was going to school. I did, I went over there and had lunch with another activist and I was telling her about some of the problems I’ve been having with finding a job and the discrimination I was encountering which I didn’t have any idea that was coming or how potential employers could behave around people with disabilities.
She was telling me about the ADA at that time, and that was there to protect people against that kind of thing. That was great, that was great to know. It’s like better late than never. I’d had people just say really inappropriate things to me during job interviews and one woman asked me if I was a little bit handicapped.
I actually got the job anyway. I was just blur that was acceptable to say in an interview. It was really strange. I don’t know if people think, they can say things like that because you’re young or what? I was like 20, 21, maybe. I was really feeling like I needed support in terms of, not only the legislation in terms of a community people that felt like I did because I felt like, I couldn’t be the only one that felt like I had a right to have a job and have a life like everybody else.
I knew that, that wasn’t how I’ve been raised and I felt like there had to be other people out there who felt the same way. The disability studies conference is really great it was a gateway into find the other activist, and other scholars and artists that resonate with the ideas that I do.
John Burke: That’s the last of the questions that you sent me. Where do you want to go?
Jennifer Justice: I don’t know. You all can be of assistance, I don’t know how much time we have.
Speaker 3: You still have 20 minutes.
John Burke: Wow.
Speaker 3: Yeah.
Jennifer Justice: Wow.
Speaker 3: What drew you to become an artist?
Jennifer Justice: I always drew and was really interesting arts. My mom had a set of books on art and I was really taken with the collection on painting and doing on Greek and Roman sculpture. I think I told you about this John, about coming across them at ease reproduction in that book and it just blew my sacks off. I was just in all of the color and the boldness of the painting. I was pretty young but I knew that was what I wanted to do and I thought how great to make something that amazing. I was really taken with sculpture.
I just drew a lot, I drew all the time and I copied cartoons, and everything I saw on TV or in the world I would try to copy it into a drawing. It never occur to me that again and again like nobody said, “Well you shouldn’t be doing that because you’re blind.” Nobody cleared me in that there’s things you’re supposed to be mutually exclusive. I went for it and I was excelled in art class, and then I started applying for little contest and winning those locally. It just seem like I was getting green lights all the way, I felt like I was really confident at it, I felt really confident as an artist, always did.
Again, I’m really lucky that nobody said, “You shouldn’t do that.” Nobody discourage me, everybody was very encouraging, appreciative in what I did. It was pretty great.
John Burke: Among other various media, did you decide on easel painting which is seems to be from what I know mostly what you do?
Jennifer Justice: I did a lot of drawing, and then when I was in high school I was lucky enough to have an artist, a couple of artists moved into the community and I took private lessons. At that point I was maybe 14 or 15, I was working in pastel and charcoal and this woman Elizabeth Dick was her name she was an oil painter and she said, “Oh you would really like oils. Let’s try it.” I did and I loved it. I took to that too and I love the smell and the chemistry of it, the messiness of it, and it’s a great grand of mess. Just the quality of color and texture and opacity or transparency that you can get with oil, this is pretty amazing.
I’ve always been very open to trying new things I guess, so I just thought why not. We used to paint her basement and we’re on the country in Chulafinnee, Alabama.
John Burke: When you were at the institute, what other media did you work in?
Jennifer Justice: In the Art Institute in Chicago?
John Burke: Yeah.
Jennifer Justice: I did a lot of performance, a lot of bad performance. I had this place in my life. I don’t know if that was phase but I loved it. I enjoyed it too. I don’t know if these questions are … I feel like they’re not really getting stories out of me I’m not sure if I’m …
Speaker 3: You’re doing this for us.
Jennifer Justice: I feel really boring.
Speaker 3: I know you said you do a lot of portraits, what you particularly interested in portraits?
Jennifer Justice: The money. People will pay you from portraits, the commissions are good. It’s not my favorite thing. I really like to do historical paintings based on photographs. I want to do more portraits of disabled people taken from history based on photographs or drawing from archives the institutions or wherever I can find them, that’s what I really want to do next.
Portraits chores is definitely … I get into it, it’s like it’s just hones your craft and it sharpens your skills, and I don’t know of it in those terms I guess.
John Burke: You talked about the book of Greek and Roman sculpture, have you done sculpture?
Jennifer Justice: A little bit, yeah. I’ve done soft sculpture, no sculpting just a little bit of sculpting from marble for that it takes forever like it is a very intense of process. I don’t recommend it if you have it live. If you want a live, it takes forever. I’ve done soft sculpture based on landscapes. I worked with stuff like fiber glass and upholstery home and upholstery materials that sort of thing.
Speaker 3: I know you talked a lot about your mom and your grandmother being role models, what’s your relationship with them like that?
Jennifer Justice: I missed my grandmother a lot, she passed away when I was 17 and so I missed her every day, pretty much, because she was such a positive force in my family. I talk to my mom pretty regularly. My mom is really conservative, she’s by California standard, I mean, by anybody standard. She’s a church lady, she’s like the southern buddhist version of the church lady. She’s really into it, she loves teaching Sunday school and stuff, and like choir and stuff like that. She digs it. It’s not my theme. My parents live in the country in Northwest Alabama now near Tupelo.
It’s a very different lifestyle than what I enjoy or prefer. If you’re not into football or church then there’s not much for you in Alabama in the Rural Alabama. It’s very beautiful, there’s a lot of park land and forest, and it’s pretty bucolic but beyond that there’s not much of an art scene. They do their own thing and I do my own thing but I talk to them on the phone and I don’t know, I think it’s nice having them around.
At the of the other way of a phone call but I wouldn’t want to live … Alabama is a nice place to grow up but I didn’t want to live there.
John Burke: When you mentioned, I remember hearing the story about seeing them at ease reproduction and the 2 words you used were color and boldness, when you say those are characteristics that particularly characterize your work?
Jennifer Justice: Yeah, I think so. Yeah. I want to say so. I’m trying to think of some other stories I wanted to tell. I wanted to talk about why I became interested in disability activism, I got into that a little bit but I felt like when I was a teenager and I was having all of these reconstructive craniofacial surgery that was a really, one of the things that was so difficult about that for me was that, I felt like I didn’t really have a say in any of it. It was like the adults were making all these pretty grand decisions about my body, but I didn’t have any control over it and I didn’t have any say.
Nobody seemed really be concerned about that so I feel like kids need an advocate with their face or that kind of thing. It could be pretty intrusive sometimes, I mean doctors would make comments like, “We’re going to give you a pretty face. You have to have this surgery because pretty girls have rounder faces not long faces.” They would say crazy shit like that and I just thought it was so widely inappropriate.
Even at that age, I knew better and I was just shocked that they felt that they could take that kind of … say something like that. Just because I was a kid, a teenager they felt like they can say whatever they wanted I guess.
It was really appalling to me and I had a female surgeon say, they were going to give me a kissable mouth. I was just appalls like I could not believe she said it. I was 15 and I wish I thought that, that it’s so wrong. Yeah, I felt like the way doctors treated me as a teenager was pretty outlandish. I hope things are better now, but it made me feel like I wanted to be able to be in a place where I could help people in the future how to go through stuff like that or help people in that self-determination process or in the process of having as much of control over yourself as you can.
Being in control of your choices and I think that there’s so many people with disabilities that their choices are so restricted, that I feel like being able to work with people and let them take agency and have their choices be respected is the best thing I can do for other people. How many minutes do I have?
Speaker 3: You have 5 more minutes.
Jennifer Justice: Yeah.
Speaker 3: Did hearing those things changed how you thought about yourself?
Jennifer Justice: No. I don’t think so. No, I knew they were out to lunch, I felt like they were really inappropriate, and I just felt … It was scary. It made me feel like I had to be protective of myself and be more vigilant around professionals who had a lot of power over me basically. Yeah, I think it made me a lot more vigilant. It was scary, it was pretty scary. I was way more paranoid around doctors after that.
I mean my dad is a doctor so a good one, I thought, I don’t know how … I guess he should’ve a naïve attitude towards medical professionals, the do no harm thing. How minutes do I have? 5 minutes, 4 minutes?
Speaker 3: 2 minutes.
Jennifer Justice: 2 minutes. What can I say in 2 minutes? Do you have any other thoughts, John to ask?
John Burke: When did you start living on your own and what was that like?
Justice: When I was 18 as soon as I could. As soon as I could get out to Alabama. Legally. I did a summer at the University of Wisconsin right after high school and I was in Madison, Wisconsin this summer of ’96 and lived in the dorm. I’ve lived on my own pretty much since I was 18. I loved it. I loved it. It’s great because … I lived in Madison and then I moved to Chicago where I did college, I lived there for 12 years and it’s great to be able to get around independently with public transportation as a person who is fine, that I couldn’t do in Alabama.
Somebody to drive me at some place and that was terrible, I hated it. It was really important for me to get to a place that had good public transit as soon as possible so that I could have a freedom of movement.
John Burke: It seems to be a certain theme, both in terms of the surgery and the independent living?
Jennifer Justice: Mm-hmm (affirmative). I’m having, being in control on myself, on my life. I think that’s something that a lot of people with disabilities with.

Music Credits: (High Valley Hometown by Lobo Loco, Poissons Grions by cuicuitte featuring renoncule comme, Axletree by Quoin featuring Andrew Freidin, and This Mess is Mine by Picture Postcard. All songs are licensed under a Attribution-NonCommercial 3.0 International License)

Source: FreeMusicArchive.org

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Suggested Reference

Disability Visibility Project™. (2017, January 16). DVP Interview: Jennifer Justice and John Burke. Retrieved from: https://disabilityvisibilityproject.com/2017/01/16/dvp-interview-jennifer-justice-and-john-burke/

Image Description:

A photo featuring Jennifer Justice and John Burke taken on August 28, 2014. A close-up portrait of a person on the left who appears to be a white and female with long blond hair. She is wearing a white sweater has visual scarring on her face and is smiling with teeth. To her right is a person who appears to be a white man with short dark hair and blue eyes. He is swearing a light blue collared button down shirt and smiling without teeth towards the camera.

Credits:

Produced for the Disability Visibility Project™ by Yosmay del Mazo and Alice Wong with interviews recorded by StoryCorps, a national nonprofit whose mission is to provide Americans of all backgrounds and beliefs with the opportunity to record, share, and preserve the story of our lives. For more: www.storycorps.org and www.disabilityvisibilityproject.com

For any questions, please refer to the Terms of Use.

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