D: Hi, my name is Dina Garcia. I’m a lifelong disability rights advocate. Right now I work for Access Services as an Assistant Administrative Analyst. (Try saying that three times fast!) I’m married; I’ve been married for 20 years, and I have one child, Brandon, who’s 15 years old. I also do some acting on the side.
K: So, how would you complete the phrase, ‘I thought I was just…’ for yourself?
D: For me it’s more like a feeling than a thought. I felt like I was invisible. Outside of my friends, my family, my siblings, people don’t know how to talk to me or be friendly. Also, I spoke to someone recently about how, because of my speech, I’ve always had people try to speak on my behalf, instead of letting me speak for myself. So all my life actually I’ve had this underlying fear of feeling invisible.
K: What aspects of your disability frustrate you the most?
D: Throughout my life, or recently?
K: Whatever comes to mind first. If there’s recent stuff that’s really pushing your buttons, talk about that. If there’s a lifelong thing, let’s hear that, too.
D: The thing that’s been bothering me most of my life is my speech. I love people, I love my friends, I love getting out and being active, but it’s really incredibly frustrating when I try to get out and do things and I constantly feel misjudged because of my speech.
K: Is there anything about your disability that you’re constantly explaining to people, maybe that you feel like you shouldn’t have to?
D: Due to my speech, I find that I constantly have to fight to be heard by people. They often talk to the person I’m with because they assume that I can’t talk or they don’t want to put in the extra effort to try to understand me. So I constantly have to explain to or remind people that just because my speech can be hard to understand, doesn’t mean I’m incapable of speaking or making my own decisions. I deserve the same respect as anyone else.
K: Are there any accommodations that you feel embarrassed to ask for?
D: Not so much now, because I think I’m more confident, but growing up in the Eighties there wasn’t the ADA so there weren’t any accommodations! So when I would go away to camp, or even at Temple–our temple was not accessible. So I would go to Hebrew school three times a week, and the bathroom was not accessible. So I had to go to the office and get someone to help me use the bathroom three times a week. That made me not want to get involved in things as much because I didn’t want to have to ask for help in the bathroom.
Simple things that we take for granted today! Back then it was a big deal.
K: Yeah, I remember that from when I was growing up, too, because that’s when I was having all my surgeries and stuff, so I was a lot less mobile than I am now.
On the flip side, are there ever times that you have been accommodated in ways that pleasantly surprised or relieved you? In a situation where the accommodations were not such a big deal, or where things were easy?
D: Actually, to be honest with you, I’m experiencing that now with my job. It’s ironic because I work for an organization that serves people with disabilities, but they don’t employ a lot of people with disabilities. So I was apprehensive about getting the job. But they bent over backwards to make sure I have everything I need.
Going back to feeling invisible, work is one place I don’t feel invisible. They want to make sure my work is seen by everyone. They want to make sure everyone knows that I did this or that project. At first I was kind of uncomfortable with it, because I did feel invisible for so long, and now all of a sudden someone wants to put me in the spotlight, so I was like, “What? I don’t understand!” But it’s good because I feel like I’m being seen for who Dina is, not for my disability.
K: That’s huge, when it shifts to being viewed in terms of your assets, not your deficits.
D: Also–and you might see this when your girls get older–but, being a mom. I know we’ve talked about how being a mom is difficult, going into the community with people’s perceptions, but when it comes to your kids? You’re going to see this as your daughters get older: Brandon, being raised by me, doesn’t know any different, so I’m still Mom.
Even as he grew up, he was asked by kids, “What’s wrong with your mom? Why does she speak that way?” His response was, “I don’t know. That’s my mom.” He doesn’t even see it. My disability has never been an issue.
I think being married and having a child has been wonderful because I feel like I’m just a wife and a mom. My disability is not even an issue.
K: I read an article once called, My Son Thinks My Disability Is Boring. It doesn’t even register with them the same way.
D: When my son was in elementary school, I had this book called Don’t Call Me Special, that was teaching about disabilities. So I would go to my son’s classroom and read this book to his class. He would come up and sit with me and we’d answer questions for the kids. A lot of the questions were towards him, about: “What is it like going to school? What is it like being with your mom?” and he would just be like, “I don’t know. What is it like for you?” He didn’t even think about it. “What does your mom do for you before you go to bed? We read a story every night.” “How does your mom make you food? She heats it up in the microwave…Well, she just puts it in and presses the button.” It was just fascinating to observe the difference between his peers and him. He never understood why it was such a big deal.
It will probably be the same with your kids. They’ll get asked about their parents and they’ll just be like, “It’s just my dad. It’s just my mom. I don’t know.”
K: It’s kind of like when people ask my sister and me, “What’s it like being a twin?” We don’t have any other siblings, so we don’t know. But we have had a perspective change over time. For me, observing my own kids and then understanding the relationship my sister and I have because we are twins, it’s a little different. But it’s just that thing of, ‘This is my experience. It’s not that special.’
D: Did kids ask your sister a lot what it was like having a disabled sister?
K: I don’t know. That’s not a question that I’m aware anybody ever asked her. I think maybe now I could handle hearing the answer, but I think I never wanted to know. I don’t need other people’s judgement on me about stuff. I may explore that with her sometime, because it’s interesting. I had never thought of that until now.
D: When people would ask my brother, my brother would tell me. When his friends came over, they would ask, ‘What’s wrong with your sister?” Or they would say, “Why didn’t you ever tell me your sister was disabled?” and his response was, “I don’t know. It’s not a thing to me. She’s just my annoying sister!”
K: Is there an aspect of your disability that you wish you had understood better or earlier in your life?
D: When I was little–3, 4, 5, 6 years old–I was just VERY independent. I would not let people help me with anything. It drove my mom crazy because I struggled so much to get myself dressed, to tie my shoes. I didn’t understand why it was so hard for me. I was determined to do it myself, no matter what, because I wasn’t aware that I had a disability.
I wish I had known, because when I got to be a teenager…Prior to being a teenager I used a walker for everything. I didn’t have a wheelchair. Well, I had the wheelchair in third grade, because that was the only way they would let me go to school. But I used the walker for everything. Then, when I got to be a teenager, I realized I was awkward. And I didn’t want to look awkward. So I started to use my wheelchair for everything. But my parents always said, “Dina, you can’t give up on your walking!” I got so mad at them, because I didn’t want to be the awkward teenager anymore; I wanted to walk WITH my friends, and have a conversation. I couldn’t do that while I was walking. But as I got older and more weak and tired I couldn’t walk at all anymore, and I wish I had known the importance of staying in my walker, even with my family in the store or something. I was so anti-walking, but I wish I had known the importance for my health.
K: It doesn’t surprise me–your fierce independence growing up, and then becoming anti-walking. I have a similar story with a different angle. It didn’t really come from my own sense of independence, but the expectation from my family that I would walk, and have a ‘normal life’–that I was just supposed to suck it up through all my surgical intervention and whatever.
Then, as I became more involved in the disability community, I was made aware that that was not the only option. Now I’m looking forward to the day when I can get into a wheelchair or whatever type of mobility device works for me so I can get a break! It’s not quite that simple; I’m not looking forward to having to embrace the learning curve with those things.
But understanding that what I grew up with is not the only option, that I can have choices about when and where and how I move because there are tools that exist in order for us to be free, is really important. So I relate a lot to what you said from a very different place.
There are so many connection points disabled people have, no matter what our disabilities are. It’s just the very ‘disabled-ness’ of it, like, wow, I went through the exact same feeling but from a different angle.
D; I hear you. From the time I was born I was kind of isolated, I didn’t know too many other people with disabilities. I went to a ‘handicapped school’ until I was in the third grade, but after that I didn’t know anybody else, really.
But every year I went to the Abilities Expo with my mom, and as a teenager I remember going there and looking around being like, “Oh, wow, there are other people like me!” I’d never seen so many people in wheelchairs and walkers and crutches and canes. I thought, “There are more people like me. This is so cool, I’m not alone!” So I understand because when you share your experiences with other people with disabilities you think, “Wow, I’m not a freak, I’m not weird. There are more people!”
K: I was at a conference one time, very early in my career. It was this family resource day for families of kids with cerebral palsy. I was 22, 23, just starting my professional life, you know. There was a girl there who looked like she was about 8 or 9.
I didn’t see her family around her, but she was just walking between the exhibits by herself and she was kind of similar to me: Didn’t use a mobility device but obviously was mobility-affected by her CP. I remember I was walking toward where she was and she looked at me like I’ve never seen anybody look at me before or since. She looked at me like I was this beautiful, exotic creature that she didn’t know existed and I wanted to run up to her and hug her–not because of the way she was looking at me but because I had a very deep understanding of why she was looking at me like that.
I restrained myself, I mean I was just very professional, adult, and sophisticated. I introduced myself, she introduced herself, we chatted for a bit and moved on. But it was this very edifying moment, I hope for the both of us, being able to recognize that YES, WE ARE HERE.
D: Yes, I can identify with that. When I’m with Americans, I feel connected. When I’m with Jews, I feel a connection, but nothing like–I don’t care what part of the world someone is from, if they don’t even speak my language.
Whenever I see someone with CP, no matter where they’re from, I feel an instant connection, like I’m with you brother, I’m with you sister. I don’t even have to say hi. I just look at them and smile. And when they smile back it’s yes, I’m with you sister. It’s an incredible bond.
Cool Cats: Voices from the Disability CommunityMeet cool and interesting people from across the disability spectrum in the fun series in which everyone is asked the same set of questions!
Kari Turner is a writer, editor, and disability activist from Los Angeles. Now also a new mom,
she and her husband are raising their family in California’s Coachella Valley. In her spare time, Kari blogs about parenting, disability, spirituality, and faith at http://writingthetao.blogspot.com