On November 21, 2015 Alice Wong interviewed her friend Rachel Stewart at StoryCorps San Francisco for the Disability Visibility Project. Below are some condensed and edited excerpts from their conversation.
On developing disability pride
Alice: Speaking about a healthy sense of disability pride. When do you think you reach that point in your life where open and proud of who you are?
Rachel: I think, well I think it was an ongoing process and it always is. You always have these new levels or senses of pride and who you are. I think that it first started for me when like, or at least developing a disability identity was being around other people with disabilities at MDA camp. That was really you know, I was young.
I was probably seven or eight and that continued on. I don’t think I really recognized it that like, “Oh, I feel extra comfortable around these people I just knew.” I love camp, but I think the pride came once I started school at UC Berkeley. I was in a disabled students residence program. I was learning my own independent living skills and learning how to manage my own care and all of that.
On attending the University of California, Berkeley in the late 1990s and living in the school’s Disabled Students’ Readiness Program
Rachel: It was a program that was originally started by Ed Roberts who’s the father or the disability rights and independent living movement to assist individuals with physical disabilities and making that transition into college and having to manage their own personal care attendance. For the first year in the program they provided 24 hour a day personal care attendance and helps you know, had another component where they also taught you how to hire and manage your own. That was like, I don’t think I would’ve moved out in my parent’s house at 17 unless I have that program. That was pretty groundbreaking for sure.
Alice: How did that help you in terms of becoming your own person and when did you learn from that?
Rachel: I think it learning that I could manage my own care, that I can be independent even though I needed help going to the bathroom and getting dressed and all those things. That doesn’t mean that I’m not an independent person. It gave me a lot more of a sense of control over my own life, instead of constantly having my parents help me. Not having any sense of I guess, well just control and being able to go to bed when I wanted or get up when I wanted and all those different things. I think that was a big part of learning in becoming an adult for me and coming out of my own skin was like just gaining that sense of independence.
The disability pride was coming out of being around other people with disabilities that basically when I lived my whole first year in the program. Even actually all the other years that I was going to school at UC Berkeley, the majority of my closest friends were people with disabilities. Having that shared experience and just understanding of we’re okay. We’re doing, we’re good, there’s not anything inherently wrong with us. That it’s instead the way that other people are seeing us and treating us.
On how Rachel’s wife became more familiar with the disability community and its culture when they first met
Rachel: …[she] had no previous history with disability. It was funny [when they first started dating] she told me it was just like, “Oh my God, I was Googling what it’s like to go on a date with somebody that uses a wheelchair.” Because she’s like, “I have no idea.” When I showed up when we first met, I showed up to the sushi restaurant where we are meeting. She had the chair pulled away. They had already pulled it away from me and I’m like, “Whoa, okay cool.” She was always thoughtful about stuff like that. We kind of figured it out… I remember she was texting me and she happened to be at a grocery store. She took a picture of the checkout thing and it said, “Donate to a muscular dystrophy association.” She was like, “You’d be so proud of me. I gave them $5.” I was like, “Oh, boy”…Then I had to take that whole thing as like a teaching experience of why the MDA, just perpetuates negative stereotypes of people with disabilities. All the stuff in how I don’t support them. The only thing that I really have gotten out of working with MDA has been summer camp as a kid. Which is amazing, and then wheelchair repairs. Everything else I’m like, “Oh, I can’t stand behind that.” She really was patient and took the time to learn from me and acknowledge that this was something new for her.
Alice: Is she pretty comfortable now? In terms of…all your friends and this huge network of people with disabilities as part of the Bay Area. Sometimes that can be somewhat daunting for non-disabled people who aren’t politicized at all to get around a bunch of uppity crips.
Rachel: Definitely. Sometimes she makes fun of me for being an uppity crip. She did like, I think it was an adjustment for her. I had to tell her how to help guide somebody that was blind. I’m like, “Let them grab your arm.” All those things, but she really wants to learn and is still learning. I think we all are.
It’s been good and I think she embraces it and she takes what she’s learned and passes it on to her friends that are non-disabled that may not have those ideas. Or even her friends that have children with disabilities and stiff like that. She’s already talking about passing on information about power soccer to one of her friends…
On being married earlier this year
Rachel: I don’t know if I ever saw myself as a married person. Growing up with a very obviously physical disability, using a wheelchair for a long time. I don’t think I ever saw that as a possibility for myself. It’s like later on in life I’m like, “Okay, yeah maybe I can date.” Then it’s like, Oh, maybe I can be in a long term relationship.” Then, “Oh, maybe I can be married.” I mean I think it was like an evolution. I’m really happy and I finally found the right person that accepts me 100%. I’m just really thankful for that. It’s wonderful being married, long story short.
Rachel Stewart is a program coordinator for the College to Career (C2C) Program at the College of Alameda, a Department of Rehabilitation-funded program supporting students with intellectual disabilities in taking college courses and transitioning into employment. Over the last 10 years, she has worked for several organizations aimed at increasing employment of youth and adults with disabilities, including staff manager of the California Committee on Employment of People with Disabilities, project director of the California Youth Leadership Forum, program manager of the California Health Incentives Improvement Project, and policy analyst at the Office of Disability Employment Policy at the US Department of Labor. Rachel is also a board member of Community Resources for Independent Living, an independent living center in Hayward. A wheelchair-user since the age of 5, Rachel holds a strong commitment to the independent living movement and a passion for supporting individuals with disabilities in reaching their fullest potential. Rachel received a M.A. in Rehabilitation Counseling from San Diego State University in 2011 and a B.A. in Psychology from UC Berkeley in 2005.