Image of two women with disabilities who use wheelchairs. On the left is an Asian woman with glasses and a green jacket. On the right is a white woman with glasses and a black sweater with white polka dots and a red scarf

DVP Interview: Olivia Davis and Alice Wong

Alice Wong interviewed Olivia Davis at StoryCorps San Francisco on May 18, 2015. Below are edited excerpts from their conversation for the Disability Visibility Project.

History of the Are Cripples Screwed panel at UC Berkeley

Olivia: It was started in 2006 by someone named Cash Moore. And they were sick and tired of just disabled people not getting laid. I’ve had people that knew this person tell me that Cash Moore was just a very horny individual which is awesome. It’s fucking awesome because that’s never discussed in the disabled community. Just like on that group that we’re in. We’ll start talking about it and then remember that one time where this one guy was just like, “Everybody’s so R-rated in this group.” Like, shut up. Just shut up. This isn’t a Disney group.

Alice: Yeah.

Olivia: It’s where all sorts of people with all sorts of experiences should be uncensored, right and if you don’t like the comment or post, skip it. Nobody is forcing you to read or comment…but with doing the panel, it’s been really, I don’t want to sound cliche, but eye-opening.

Alice: Yeah.

Olivia: And inspirational in a way.

Alice: In a good way.

Olivia: Yeah. Because going to a high school where you’re the only mainstream disabled kid, you don’t have a lot of other people you can talk to. And then suddenly you’re in this group where you’re all just talking about your sex lives. It’s just like, whoa. One of my close friends, I was teaching her, telling her, giving her tips on how to masturbate, cuz she doesn’t have a lot of arm movement. I was just like what if we put it on one of those back scratcher things, and you can hold it, or what if we get one of those underwear things that vibrates. It’s just really awesome to just go around and see these people that we’re talking to.

There’s always someone in the audience that’s looking at you with their jaw dropped and their eyes are just wide open the entire time. And they just look like they’re just shocked.

Alice: And that’s actually really good.

Olivia: It’s awesome.

Alice: It’s a first step, I think.

Olivia: Yeah.

Alice: In their own liberation. I hope, right?

Olivia: Yeah.

Alice: And I think this is what’s unique that UC Berkeley has enough students, a real critical mass of students with invisible and physical disabilities. I mean, it’s one of the most accessible schools that has a huge number of services for students with disabilities.

Obviously it’s a magnet for students with disabilities who want a good education. So you have this critical mass of horny, sexual, disabled people who want to get laid. So what happens in these panels? How do you run them? What is a typical panel?

Olivia: And then we start out with just who we are. What our major is, how old are we. What our disability is. And then we talk about just a brief history of disability. And a lot of things I like to talk about is the ugly laws which America does not like to talk about at all.

Alice: And not only that, but eugenics.

Olivia: Or eugenics. But you can type in the ugly laws on the internet, you’re not going to find it. That’s something that Uncle Sam likes to kick under the rug. And eugenics and forced sterilization and all this other stuff regarding the history of disability and sex and then we just talk about dating, parties. I love this section cuz back in the day where I used to drink alcohol, there’s a lot of times where I would go to co-ops and partied with my closest friends and there’s a lot of great stories that come out of that. And then we talk about sex. So we save that for like the last, hour to half hour. How we do it and how you do it better, or How we do it, how to communicate. The use of attendants during that. Cuz a lot of times, people think that attendants are going to be in the room, and like helping us move during that which isn’t always the case.

On sex and disability

Alice: This must be where a lot of young people, kind of their first exposure to other disabled people. Talking about their bodies.

Olivia: Yes.

Alice: Talking about pleasure.

Olivia: Yeah.

Alice: … this is what it’s like really radical but it shouldn’t be radical, right? Because I feel like for so long, we don’t own our own bodies in a lot of ways. And part of that as you mentioned is this absence or invisibility of disability history.

Olivia: Right, well it also has to do with like sex education too. Like growing up, my sex education in my high school was horrible. All I learned was that teacher had crabs and don’t get AIDS. That’s all I learned, and it’s all I remember. And condoms. I’ve heard other stories where they would have the disabled kid just go to the library, and of course they’re gonna go to the library because I don’t have to sit in class.

Alice: So why would they segregate the kid with a disability?

Olivia: They assume that we’re asexual. Just that because we’re disabled we just have a Barbie doll vagina or a Barbie doll penis or just nothing down there at all.

Alice: Or no sensation.

Olivia: So yeah, it’s often this really weird. Since that oh, this is for people with disabilities. Like people who are in wheelchairs by themselves. Somehow that absence of being able to walk… Somehow our whole lower body is like a dead zone. Absence of walking equates to not getting laid at all, which is not the case at all.

Alice: Yeah and…I’m borrowing this paraphrase I guess from somebody else I heard, but it’s like, “I’m in a wheelchair, but my pussy ain’t broke.”

Olivia: [LAUGH]


Olivia Davis is an undergraduate student at the University of California, Berkeley. She is the organizer of the Are Cripples Screwed panel for students with disabilities at Cal since 2014. Olivia wants to be a sexual health educator for people with disabilities.

Image for It's Our Story project. You see an American flag with the picture of the United States that's inside the upper right side of the flag instead of white starts. On the right side it says: Power. Passion. Pride.

Disability History: Laura Hershey, Denver, CO

It’s Our Story is a national initiative to make disability history public and accessible. Scott Cooper recorded and collected over 1,300 video interviews from disability leaders across the country since 2005. Check out a video uploaded on July 19, 2010:

Laura Hershey of Denver, Colorado, speaks about being disabled in the education system, the prevalence of images of pity, and disability issues on a national and international level.

Laura is nationally recognized for her activism and advocacy on a wide range of disability rights and social justice issues. She serves on several committees related to health care policy and engages in ongoing grassroots activism with groups such as ADAPT, Not Dead Yet, and the Colorado Cross-Disability Coalition. In recognition of her activism, Laura received the 1998 President’s Award from the President’s on Committee on Employment of People with Disabilities.

Click on the CC button in the YouTube window for captions.

 


It’s Our Story

Website: https://sites.google.com/a/pinedafoundation.org/ios/home

YouTube: https://www.youtube.com/user/itsourstoryproject

Facebook: https://www.facebook.com/PowerPassionPride?ref=ts

Email: ItsOurStory@gmail.com

Image of two women in wheelchairs. On the left is an Asian woman with glasses and wearing a red hoodie. On the right is an African American woman with short black hair and a black shirt.

DVP Interview: Yomi Wrong and Alice Wong

On April 11, 2015, Alice Wong interviewed Yomi Wrong for the Disability Visibility Project at StoryCorps San Francisco. Below are short excerpts from their conversation.

On Yomi’s birth, racism, and ableism

Yomi: Great. I’m trying to think about any experiences that helped shape who I am, and of course, everything does, right? Like we’re the sum total of our life experiences. But in terms of my disability identity, there were a couple of things that came to mind. So when I was born, in 1972, in Manhattan, I was my mother did not know, in utero, that I had this disability [osteogenesis imperfecta] and I had a lot of broken bones in utero, as do most children, babies that have OI and my mother had a vaginal birth which then broke the rest of my bones. [LAUGH] So I was born with my, both of my arms and legs broken. Several ribs fractured skull, collapsed lung, and I was in pretty bad shape.

Alice: Mm-hmmm.

Yomi: And I was not diagnosed initially with brittle bone disease. Instead, the way my family tells the story, the doctors immediately thought that my mother was a victim of domestic violence. Or that she a drug addict.

Alice: Oh God.

Yomi: That she had done something to cause this.

Alice: [And] obviously that race played a role?

Yomi: Oh I think it played a huge role. You know, my family, I would say, was kind of solidly maybe upper working class from the Bronx, and my mother was really taken aback to be, to have that assumption… My father wasn’t there initially at my birth. He was somewhere else, and he came to the hospital later. And so, they were grilling my mom. She just had a traumatic birth. Seriously. I was broken to pieces. They told her I wasn’t going to live through the night. Right. If I did live through the night, I would probably last no more than 72 hours, and they were asking her really offensive questions. So there was this whole assumption that that my father maybe had punched my mother in the stomach or thrown her down the stairs, or that my mother was a heroin addict, or some kind of drug addict.

So this was back in the day when women would spend like a week in the hospital after giving birth. And my mom says every single day that she was in the hospital, doctors and social workers will come to her room and tell her to give me up. They told her that I was more than likely not going to survive. That she had quote unquote two normal children at home. My sisters were three and four years old. And they were pressuring my mom to sign away her rights to me. They told my parents that if by some miracle I lived beyond three months, beyond a year, that I would have no speech, that I would have virtually no brain function, that I would be in vegetative state, that I would never move, that I would never be able to take care of myself, and that I would be a tremendous drain on the family and on them, and that they should leave me there. And explaining to my mother that other families had done this, and nobody would look askance at her for doing it, and my mom was just so confused, and depressed, and scared. And she had, you know, the medical establishment, the experts telling her that there was no way that she could handle this. And leaving the papers there by her bed and every day, multiple times a day, coming in and saying you need to sign this paper.

And my mom said one night, or one day, there was a black nurse. It was not my mother’s nurse. She had heard about me and heard about my mom. And you know I’m in the NICU and I’m laying on lambswool because that’s the only thing soft enough for me to lay on, and so people were see, looking at me. I had all these broken bones and this Black nurse snuck into my Mom’s room and said, “You don’t have to give up your baby.”

Alice: Wow.

Yomi: [The nurse said to Yomi’s mom] “I just want you to know. I know that you’ve been resisting, and I think that they’re wearing you down. And I just want to tell you, you don’t have to do this.” She’s seen it before. She must have seen it before. And of course my parents and then my, my mother’s family, they were all like if she’s going to die, she’s going to die at home.

We just don’t have a history in our family of giving up our children. We don’t. We take care of our babies. So my mother brought me home. And so fast forward, I remember being, and I had always been told this story. Like, you know, all little kids wanna know about the story of their birth and so part of that story, and I think it was a point of pride for my parents…[Later on] So my dad took me back to the hospital. My dad tells this story, and he found like the doctor that was involved who said that I would, you know, have no ability, would not ever talk, would not feed myself, would not do anything. And he, chased this guy down, in the hall and said, “Do you remember me? I’m Mr. Wrong, this is my daughter, this is who you said we should leave here to die and that you guys would dispose of her.” And look at how stupid you are. Like, you don’t know.

Alice: In your face!

The story of Delinda

Yomi: So then fast forward, I remember being 5 or 6 and my aunt and grandmother were volunteers at Jacobi Hospital in the Bronx, and they would sometimes take me to to the hospital with them to like, see how they volunteered, and they took me to the basement of the hospital and they said we want you to meet somebody. There’s a little girl here with OI, my same disability. And she’s also black and she was a little bit older than me. But Delinda lived at the hospital, because her parents had given her up.

Alice: Oh my God.

Yomi: And I didn’t understand.

Alice: Right.

Yomi: And they were, and I was very young, I was like five or six, maybe, seven, and they would explain, well, she lives here. I’m like, what do you mean she lives here? They said, well, she, she doesn’t have a mommy or daddy, she, she lives at the hospital and the nurses and the doctors, they’re her family.They take care of her. And, I remember meeting Dalinda. There were other kids there but, like, they all fade from my memory. I don’t remember any other kid there except for Delinda. Because she looked so much like me and I remember she was in one of those, like, pediatric hospital beds.

Alice: Yeah, that look like a cage because they have high rails.

Yomi: Yeah, but to my mind, at like six years old, I thought it was a cage. And, from my vantage point, I’m like, is she an animal? And I remember vividly her sticking her little hand through the rail to like shake my hand and talk, and she was very chipper and cheery and my aunt and grandmother loved her, and they would go visit her all the time, and I was frightened, you know?

That could have been me. So my whole life, I have wondered about this girl and I heard from my aunt that the Delinda eventually was adopted by a nurse and I always wondered like what happened to her. How did she grow up? What life chances? But then I also thought you know, did they lie to her parents too?

Alice: Yeah I think you know. This idea that, not only are parents, you are unable to care, that we at the hospital can provide everything that your child needs. And I think that is where, you know, disability really is so underestimated. And I think this is where they think, don’t worry. All they think about is terms of medical care, right? That, don’t worry, your child with severe needs will be getting, will be, will be having 24 hour care. But they don’t ever think about each other, nurturing the social relationships. The impact of parents being away from their child and that child not having that socialization experience.

Yomi: Absolutely.

Alice: The impact of parents being away from their child and that child not having that socialization experience. Not having the benefit of growing up in a home, with a family. Whether it’s a birth family, or an adopted family.

Yomi: so it registered very early on for me that if I did not want to end up, say like Delinda, I needed to get a job. [LAUGH] I need to work, I needed to take care of myself. You needed to be twice or three times as smart as everybody else. I better be really good and I better.

Alice: Economic self sufficiency.

Yomi: I need to not be dependent on people because people go away…It’s like this, this girl haunts me. [LAUGH] You know, I hope she’s good, I hope she’s okay but I know that I don’t ever wanna be in an institution [later in life]. And I worry about that. You know? What is, what is, what does old age look like for me and you?

Alice: Yeah and I think you know, unlike some of the able bodied people when you think about these issues. Much earlier in our lives and that we actually might because of our disability and our different ways our bodies work may have to retire earlier ages. So that [impacts our] actually our earning potential and our attempt, our ability to save half. Which I have benefits was totally different from my non-disabled friends.

Yomi: It does I’m actually obsessed with retirement savings right now.

Alice: I think back about your mom and your aunts, and how instrumental [they were in your life] and, you [how] people might not think of them as activists, but by volunteering they were really a presence…, subtly informing and being around and being and influence on other parents [at the hospital]… and these are the kinds of quiet activism that, if you like, you know, we really need to highlight through stories like this, because we need to honor this…

Yomi: [My mom], she talks about being a drift until she found a community of other parents that had children with disabilities, and, and I think that’s really powerful.

DeLinda from the Bronx, New York, formerly of Jacobi hospital, if you ever hear this and you’re listening, I’ve been thinking of you and I carry you in my heart always.

Alice: Yes. Thank you Delinda. Thank you Yomi.

A panel from a comic book. On the left is an image of a blond woman holding fruit roll-ups. She is blonde, has blue eyes and wear glasses. She's holding the snacks and there's a bubble that says, "Fruit Snack?" on the right side is another image of the same woman in a wheelchair wheeling herself. She is wearing a green top and dark blue pants

Disabled Geeks: Improve Representation of Disability in Wikis

Calling all geeky crips! Do you have a favorite comic book character with a disability?

Do you find wiki posts about disabled comic book characters ableist, inaccurate or devoid of a disability perspective?

If so, we’re looking for you!

Dominick Evans and Alice Wong of the Disability Visibility Project are looking for volunteers to update various entries in comic book wikis.

How to participate:

1. Select a Wiki that has an entry of a comic book character w/ a disability. Here are a few:

Marvel Comics Wiki

Marvel Cinematic Universe Wiki

Marvel Universe Wiki

DC Comics Wiki

DC Movies Wiki

2. Update an entry of your favorite character, adding your perspective and interpretation as a disabled person.

3. Let us know by tweeting us the link of the updated wiki entry: @dominickevans @DisVisibility with the hashtag #FilmDis or email Dominick: geekycripswiki@gmail.com

Don’t know what a wiki is? Check this out: http://www.teachersfirst.com/content/wiki/

 

HAVE FUN!!

Image for It's Our Story project. You see an American flag with the picture of the United States that's inside the upper right side of the flag instead of white starts. On the right side it says: Power. Passion. Pride.

Disability History: Belinda Stradley, Berkeley, California

It’s Our Story is a national initiative to make disability history public and accessible. Scott Cooper recorded and collected over 1,300 video interviews from disability leaders across the country since 2005. Check out a video uploaded on August 7, 2010:

Belinda Stradley of Berkeley, California, speaks about becoming disabled in her adolescence and eventually becoming a proud activist in the independent living movement.

Belinda has avid experience in grant writing and fundraising for disability efforts in Berkeley; she current works at Easy Does It Disability Assistance in Berkeley.

Click on the CC button in the YouTube window for captions.


It’s Our Story

Website: https://sites.google.com/a/pinedafoundation.org/ios/home

YouTube: https://www.youtube.com/user/itsourstoryproject

Facebook: https://www.facebook.com/PowerPassionPride?ref=ts

Email: ItsOurStory@gmail.com

Image for It's Our Story project. You see an American flag with the picture of the United States that's inside the upper right side of the flag instead of white starts. On the right side it says: Power. Passion. Pride.

Disability History: Billy Golfus, Minneapolis, MN

It’s Our Story is a national initiative to make disability history public and accessible. Scott Cooper recorded and collected over 1,300 video interviews from disability leaders across the country since 2005. Check out a video uploaded on July 26, 2010:

Billy Golfus of Minneapolis, Minnesota speaks about living with brain damage, being a disabled filmmaker, and his friendship with Ed Roberts.

Click on the CC button in the YouTube window for captions.

 


 

It’s Our Story

Website: https://sites.google.com/a/pinedafoundation.org/ios/home

YouTube: https://www.youtube.com/user/itsourstoryproject

Facebook: https://www.facebook.com/PowerPassionPride?ref=ts

Email: ItsOurStory@gmail.com

Image of two women sitting side by side. On the left is an Asian woman with glasses and black hair. She is wearing a green jacket. The woman on the right is white and she has long brown hair and glasses. She is wearing a black puffy winter coat and a green sweater.

DVP Interview: Dominika Bednarska and Alice Wong

On December 13, 2014, Alice Wong interviewed Dominika Bednarska for the Disability Visibility Project at StoryCorps San Francisco. Below are short excerpts from their conversation.

On queer and disability identities/communities

Alice: Dominka, I have to admit to you, I did a Google search, and I Googled you, and you know, it’s really interesting is, a lot of articles about you, you know, they describe you as some of these words: queer, disabled, femme, academic/performer/activist and that’s a mouthful! [Dominka laughs] But, I want to know, how do you… does that sound accurate, and, how do you describe yourself in a.. if somebody had to.. you had to sum it up, quickly.

Dominika: Um, well, I guess, you know, I am all those things. Um, I think I just wrote on my StoryCorps form that I’m a disability studies scholar and performer and government worker as far as occupation, but, yeah, I mean, I also identify as a queer femme and, you know, lots of different things depending on context, I guess. But. That all sounds pretty accurate. [Alice and Dominika laugh].

Alice: Yeah, and there’s like, a lot of things, you know, all combined in that. I guess, could you tell me a little bit about your, kind of, thoughts about, your queer identity and your disabled identity, and kind of how the intersection of those two things fit in.

Dominika: Yeah, I mean, I think that, I feel like there’s a lot of overlap in some ways between my queer identity and my disabled identity, um, cause I think there is this way in which disability can kind of, you know, turn things upside down and really make us question normative concepts about the body and the mind. And, I feel like, you know, in a way, queerness does that as well in terms of thinking about, you know, sexuality and desire and what’s sort of acceptable and appropriate or not. And, um, I think that there’s, you know, there’s ways that those two identities really inform each other and kind of, give one a bigger space to be outside of cultural norms. But then, you know, I also feel like, there is a lot of asexualization that happens when one has a disability and kind of presumptions that one you know isn’t a sexual person, and that really, kind of goes against the kind of, hypersexualization that can really happen around queer cultures, and kind of, you know. The ideas that queers have about bodies and [laugh] sex are still very, in some ways, are still very ablised and very kind of normative things, you know. Depending on the queers I guess, but…

Alice: Yeah, there is, you know, at least I think we’re lucky in that San Francisco/Bay Area, that there is this nice kind of confluence, and there is a pretty strong queer disability community. [Dominka: Yeah] What’s been your involvement or connection to the queer disability community?

Dominika: Um, well, I was involved with this group Laura Ripkin put together called “Fabled Asp” that was a group of disabled lesbians in the Bay Area. So, I’ve done some stuff with them. There have been some really cool disability sexuality centered events at the Center for Sex and Culture. So those things happen. I mean, I have queer and disabled friends that I am friends with because I met them at various events on disability and queerness. So, I mean, I don’t know.. I think um, I think it’s more my relationships to different spaces and different people than like, one coherent community that I can put my finger on. It’s true that there’s more sense of that here than anywhere else in the country.

Alice: Yeah, and you definitely would find more queer disabled people…not saying that you need a label or organization to coalesce around, but they’re, they’re just around. And there is this kind of informal network. And, sometimes you know, it’s like, it’s nice that there are people who share multiple identities together in the same space. Because so often… it’s isolating when you’re the…when you’re in queer spaces you might be the only disabled person or, sometimes in the disability community, definitely for the queer LGBTQ, they’re often the only one there. And, I think there’s a lot of ableism and homophobic stuff that happens within both environments.

Dominka: Yeah, it’s true.

Alice: Tell me a little bit about your experiences traveling across these different terrains. And, I guess it’s kind of unfair to assume that they’re separate spheres, but, sometimes they do feel separate.

Dominka: Well, I think the queer disabled community is fairly small, by comparison. You know, there’s gonna be more disabled people overall and more queer people overall, so. You know, I think anyone who’s disabled and queer has had experiences in queer space where they’re the only disabled person there. And you know, also being in disability spaces that are pretty, you know, pretty heteronormative and pretty focused on that whole idea, yeah. You know, I worked at a disability nonprofit when I finished college and it was, you know, I thought, this is gonna be a really great environment because they were a really up and coming organization, and I just really experienced a lot of homophobia when I worked there. And you know, it was my first job out of college and I came from a school that was, had a lot of disability access barriers, but you know, was very queer friendly, so, I think that was very difficult and surprising, but most of my issues at that job had to do with being a woman and with being queer. Not so much being disabled. Because, it was mostly male, and mostly white men that were part of it at that time so…

On the creation and performance of Dominika’s one-woman act, “My Body Love Story”

Dominika: Yeah, it was something that I wanted…it took me 10 years from first thinking of the idea to actually like, bringing the show to completion and doing a full performance so, it’s something that I, I was thinking about and wanting to do for a very long time and, um, the show basically consists of monologues and there’s some dancing and all of the monologues are around moments in my life where my relationship to my body changed, um, you know, sometimes for better sometimes for worse, although, mostly for better and that’s kind of like, the structure behind creating the show. So, you know, there’s different things.

There’s the shopping piece that you talk about, which is, you know, totally a true story, I mean, I was very much dragged into a fitting room and like, only really put that on to shut my friend up so she wouldn’t keep harassing me about it (laugh). Um, and you know, I was like, I get it! I understand slutty clothes (laugh) and why women buy them and (Alice: they’re empowering!) Yeah! I mean, not, empowerment means different things to different people, but at that time in my life, I was like, oh wait, I do get it, like, I’m cute. I have a nice body. And this is at that time in my life I really, that was a big piece of how I discovered my sexuality and became comfortable with my sexuality. Really, it was like, you know, coming into this identity as a femme that I realized that I could have, without taking every single piece of what being a femme meant, culturally. You know, I could pick and choose the parts that I wanted and it felt good to me. And you know, going out dancing, and it was kind of, I guess, an unusual choice for someone who’s a crip physically. But what I think I liked about that space is that I really like music, and I really like dancing, and it was just something that brought me a lot of joy, just like, on its own. And then, you know, it’s a very sexualized space, so, it’s really, like, you know, I still kind of had these weird fucked up ableistic experiences with people, but at the same time, it’s a space that’s so sexualized that it’s, it’s pretty clear when someone’s interested in you, at least on some level, just because of like, the physical contact and the whole set up of the thing.

So, at that time in my life that was really important. But, I also have a piece in the show about physical therapy and some disabled dance performances that I went to that were really influential, and um, I have a piece about going out dancing and what some of those experiences were like. And, um, you know, a couple of pieces that center around different relationships and things like that. So,.. I wanted to do the show because when I was in my early 20’s and in college and you know, realizing that I was, you know, queer, and um, trying to figure out, ok, so I’m queer, and I have all these sexual feelings that you know, my peers do, and they all seem to be hooking up and finding people and it seems super easy for them, and that’s not really happening for me in the same way and like, what’s that gonna look like for me and how am I gonna break out of this idea that people have that you know, that I don’t fall into those categories for some reason. And there’s really nothing I really could find. I think it’s better these days, but I really could find just nothing that spoke to any kind of disabled queer experience. Like, I would Google disability and sexuality, and I would find articles on the internet about how to get men with spinal cord injuries off (Alice: oh my god!) and sexual surrogacy, and I’m sitting in my room, 19 years old, like, this is not helpful! (Alice: yeah…) You know, I’d go to the book store and it would be like, ‘what to do now that your lesbian partner has become disabled,’ and I’m like, “This is also not what I need help with, like, I need to figure out how to do the whole kind of dating thing, not really the whole, you know…”


Dominika Bednarska holds a PhD in English and Disability Studies from U.C. Berkeley. Her writing has appeared in many places including Sinister Wisdom, Bellevue Literary Review, Blast Furnace, and Nobody Passes: Rejecting the Rules of Gender and Conformity, a Lambda nominee. Her show My Body Love Story kicked off the National Queer Arts Festival in 2012 and is part of this year’s SF Fringe Festival in September.

For more information, go to dominikabednarskaspeaks.blogspot.com

Image of a projection screen that features a screenshot of the Disability Visibility Project website. On the upper left hand corner is a photo of an Asian American woman in glasses.

DVP and Social Media

This video is a presentation for a small group session given at the StoryCorps San Francisco Audio Workshop for community partners on June 2, 2015 in San Francisco, CA. The Disability Visibility Project presented an overview of how StoryCorps Community Partnerships can utilize social media and publicity in their activities.

 

Black and white outdoor image with a barn in the background. A white woman in her 60s is wearing a white and black sleeveless dress. She is using crutches. She is standing left. In the center is a young man, her son dressed in a gray suit. On the right is an older white man in a dark business suit.

Guest Blog Post: How I Found Out I Was Bad

Many thanks to Susan Miller for writing a guest blog post about growing up with polio as a girl in the 1940s.

How I Found Out I Was Bad

Susan Miller

One summer in 1948, at age 5, I found out I was bad.

On a street corner in Cincinnati, I was with other neighborhood kids collecting for the March of Dimes, holding a poster that showed a little girl with braces and crutches; I dutifully called out its warning to everyone passing by, “Don’t Let This Happen To Your Child!”

While I was speaking the words, I remember mumbling something like, “Don’t let me? happen….”?

When I went home that day, I felt different: sad…. bad…… ashamed. Was I such a bad thing for my parents that people needed to be warned about me? Did my parents need the money I was collecting? For the first time in my life, I wondered, how did my parents feel about me?

As Kindergarten approached that Fall, those feelings persisted and became firm. I had pictured going on the bus to school with my brothers; instead I got in my Dad’s car to go to school with children who were strange to me.

When I entered my classroom I saw children who were very different from any I’d ever seen. The school had grouped every kind of disability into one class – physical and mental – many of them deformed, or postured weirdly in wheelchairs or moving awkwardly, jerkily.

My reaction might be considered harsh now, but at the time, it was generally accepted public policy to keep those with disabilities “out of sight/out of mind” so as not to “upset” the public. Indeed, it was even against the law in some states to appear in public!)

So there I was, in an unknown world with children I’d never seen before. I was frightened by wild-eyed stares and confused at the unintelligible words they shouted…at me?? Why was I there? I wasn’t like them!!)

When I learned the school’s name, “The Condon School for Crippled Children, I finally understood why I was there; I began to despise the “c” word and I didn’t want it to apply to me!

I began a phase of “Denial” — where I stayed for almost 40 years — by ridding myself of anything that could identify me with the “c” word.

Though I used both brace and crutches, I knew I could get by with crutches alone. They didn’t identify me with the “c” word nearly as much as a braces did. So against my doctors’ and parents’ warnings about damage to my musculoskeletal system over the long term, I refused bracing of any kind. After all, what did “long term” mean to a 5 year old?

I didn’t know how, but I knew I had to escape the Condon school, since its students all wore the “c” label. Ironically, the school ended up eliminating itself; it required all students to follow doctors’ orders. My doc prescribed bracing.

When First Grade started, I appeared ready for school without a brace. After my Dad dropped me off, the school called my parents to remind them of the rules.

The next time I appeared without my brace, I was sent home. The stage was set. So the next morning, after my Mom tried to convince me to wear the brace, I threw a tearful tantrum. Next thing I knew I heard her pick up the phone and say, “No, Susan won’t be attending Condon School this year.”

I later learned that my mom had to endure a bureaucratic nightmare to get me into the public school. Had she not persisted, my life would have been drastically different: I’d never have reached my academic potential or have exposure to the arts with a substandard education; I’d never have learned social norms being isolated from role models to mentor me

And so I began my years in public schools and began to thrive. I did so by making myself “pass” as “normal”. As a result, I found myself surrounded by friends, included in every social activity, elected as a leader, and along the way, earned top grades and honors. My crutches had never seemed to be an issue as far as I could tell, that is, until I “came of age”.

Entering high school in 1956, I was about to learn the same lesson I’d learned while holding that March of Dimes poster: I was “bad,”….again ……only this time it hit me achingly hard, cutting me to the core. The lesson: I was fine as a “girl”, but I’d never make it asa woman.

During my high school years, I not only repeated my early successes, I doubled them – in friendships, in grades, always elected to leadership positions; I was even crowned Homecoming Queen in my senior year, which to me was the highest form of “normal”(!) though it apparently didn’t make me worth dating. I could have guessed why on my own, but in case I couldn’t, a good buddy I’d known since First Grade spelled it out for me early in my Freshman year.

As I sat gabbing with him, he turned to me wearing a big smile and said (probably a great compliment to him), “You know, Sus….it’s a good thing you had polio, or otherwise you’d be too perfect.” It was to be my reality over the next four years of high school: out of about 100 guys in my class, the number to ask me out: one. And that was only after I’d asked him first.

During those years, I’d passed by acting like my crutches were no big deal, just an inconvenience.

As usual I wanted to be like everyone else as well as a good sport, so I always laughed at the stupid jokes, even when I was the butt. One time, for example, I chuckled with my boyfriend as he told me that his Dad being so proud of him for taking me out; it was a “good deed”! And he got to be “the good boy!”

I tasted even more success in college, yet I faced the same fate, where basically one good guy found me date-worthy. I remember hoping that in the post graduate world, adult men would find me attractive as a woman, and I could stop trying to come up with funny retorts to the endless jokes about my crutches, such as “a skiing accident?” or “what happened to the other guy?”) Over the years, I’d learned that if I didn’t take responsibility for putting others at ease after these faux-pas, I’d pay the price; they’d always feel uncomfortable around me.

Back home after graduation that summer, I accompanied my Dad to a business event, where my dinner partner enchanted me by endlessly raving about how fabulous I was, a perfect woman for his bachelor son, wanting my phone number to pass along.

Had my hopes been answered by this charming man, a real adult, who found me so desirable! After dinner and a trip to the Ladies Room, I returned to find his chair empty. Apparently he’d had to leave abruptly, but I could see that he’d left a message on the table for me. As I read the message, it was indeed for me, a phone number.

It was mine.

Maybe it wasn’t all that surprising, but at any rate, it was time to move on, time to get a job. I applied to Cincinnati’s most prestigious company, Procter & Gamble, where MBAs flocked every summer between B-school years to intern at this top-drawer firm. Strong interviews and recommendations landed me an offer immediately; I was ecstatic!

Ecstasy was short-lived, however; the next day I got a call withdrawing the offer: I’d failed the physical! While deeply disappointed, I remained the “good sport”, saying I understood that I posed a greater risk for further injuries than other employees.

What I didn’t realize back then was that I’d just had my first taste of employment discrimination. Perhaps P&G did, however, because they called the next day to re-extend the offer, along with an apology. I reported my first day, thrilled to be working alongside those MBAs; I wondered, too, whether I’d end up dating one of them.

Actually, within my first year, I dated several, including one who turned out to be my “Prince Charming” (In September, we’ll celebrate our 50th Anniversary.) I doubt that my successful dating wasn’t an indication of a change in attitudes; people with disabilities remained an object of wise-cracks throughout most of my adult life.

When I was raising my family, there were times when my children had to deal with these things; I remember once when I was shopping with my 4 year-daughter, a child nearby pointed to her, exclaiming “Look Mommy; she has a broken Mommy!” Or the time I was the only parent to show up at my son’s baseball game and had to fill in as coach. I remember introducing myself to the other coach, after which he laughed and told his little boys, “We should certainly be able to beat a team with a cripple for a coach!” (“My” boys, upset by that crack, played their darndest and eked out a tie in the final inning, which to me was as sweet as a win.)

As I look back at the almost 50 years of my life, the attitudes I experienced reflected universally negative ideas and opinions: people just didn’t see how life with a disability could be worthwhile, let alone satisfying or personally fulfilling. A remark I’ve commonly heard at funerals says it all, “It’s just as well that [so-and-so] passed away; he could’ve never lived like that,” (meaning a wheelchair).

With attitudes so deeply ingrained over the centuries, it raises the question as to whether they can be changed by a piece of civil rights legislation, such as the ADA. An about-face would be needed to ensure people with disabilities were welcomed as full participants in our society; this question will be addressed in the next section.

Photo: Susan Miller (left) with her son BJ (center) and husband Bruce (right)

For more on Susan Miller: http://disabilityvisibilityproject.com/2014/08/02/our-first-donation-thank-you-susan-and-bruce-miller-st-louis-mo/

Book cover that reads at the top: Springer Publishing Company. A multicolored background with an inset black box that reads: The Guide to Assisting Students With Disabilities: Equal Access in Health Science and Professional Education, co-edited by Lisa M. Meeks, PhD, and Neera R. Jain, MS, CRC.

Guest Blog Post: Disability as Diversity in the Health Sciences

Alice Wong, Project Coordinator and Founder of the Disability Visibility Project, wrote an introduction to an upcoming book, The Guide to Assisting Students With Disabilities: Equal Access in Health Science and Professional Education, co-edited by Lisa M. Meeks, PhD, and  Neera R. Jain, MS, CRC. Copyright 2015. ISBN: 978-0-8261-2374-9

Below are several excerpts from the Introduction. Reproduced with the permission of Springer Publishing Company, LLC.

A Call for Equal Access in Health Science and Professional Education

People with disabilities are easily understood as “the patient” within the health professional-patient dyad and very rarely seen as “the professional.” Systemic and institutionalized ableism marginalizes people with disabilities by categorizing them as “vulnerable populations” that are “objects of care,” not “professionals with expertise.” That a person with a disability can be a healthcare professional challenges, at minimum: 1) the notion of what comprises a “typical” healthcare professional (i.e., what they look like and how they perform their work); and 2) the low societal expectation that people with disabilities will attain a role with such authority, legitimacy, and competency.

The terms “diversity” and “cultural competency” are touted as important priorities in health science and medical education programs because having a diverse workforce is a social good that makes business sense and a way to reduce health disparities (Cohen, Gabriel, & Terrell, 2002). This is all true. However, the definition of diversity most often used leaves much to be desired. Universities aim to have diversified workforces and students by focusing outreach to women, racial/ethnic/linguistic minorities, LGBT individuals, immigrants, and veterans. With approximately 57 million Americans with disabilities in the United States—the country’s largest minority at 18.7% of the general population—people with disabilities are still often excluded from diversity initiatives, practices, and policies (Brault, 2012; McKee, Smith, Barnett, & Pearson, 2013).

The Association of American Medical Colleges has included disability in their description of cultural competence for less than a decade (DeLisa & Lindenthal, 2012). One recent survey suggests people with disabilities are vastly underrepresented in the health professions with 2-10% of practicing physicians even though they make up about 20% of the overall population (DeLisa & Lindenthal, 2012). Societal attitudes, blatant discrimination, and access issues are several reasons for such low numbers, suggesting serious challenges to providing equal access to students with all types of disabilities in the health sciences and medical education.

The definition of disability, like diversity, has a narrow meaning by some. Having a disability is still considered by many as something purely related to health, disease, functional limitation, and impairment of the body, especially in the health sciences (Long-Bellil et al., 2011). However, there is disability culture and there are disability communities everywhere (Robey et al., 2013). Increasing the number of culturally competent professionals with disabilities in the health sciences will broaden the knowledge base and breadth of experience within all fields, in addition to filling a critical shortage in the healthcare workforce. The increased presence and perspectives of people with disabilities will influence the way professionals view disability and the assumptions associated with it. Moreover, professionals with disabilities can improve patient care, impact research agendas, workplace attitudes toward disability, and reduce the significant barriers to healthcare, discrimination, and ableism experienced by people with disabilities (Disability Rights Education and Defense Fund, n.d.; Smeltzer, Avery, & Haynor, 2012; Moreland, Latimore, Sen, Arato, & Zazove, 2013).

An expansion of what disability and diversity means is a step in the right direction. Another critical step requires challenging the presumed abilities associated with being a student or professional in the health sciences (American Association of Medical Colleges, 2013). A student with a visual impairment may need a microscope slide projected onto a screen rather than looking into the actual microscope. A student of short stature may use a step stool or an adjustable exam table to have access to a patient during rotations. These types of accommodations and adaptations do not take away from the patient experience or the student’s abilities. In fact, I would argue that the exposure of these different ways of doing things improves healthcare in general. Other students may discover having images projected from a microscope to a screen can reduce eyestrain and provide easier viewing. Adjustable exam tables that are meant for a disabled patient or health professional can suddenly become popular and used by a wide array of patients and colleagues because of their ergonomic features.

University leaders need to initiate a policy and culture shift that encourages prospective students with disabilities and communicates that they belong and are needed in the health sciences and medical education.

Academic institutions can take several steps to ensure equal access for students with disabilities in the health sciences and medical education:

  1. Embrace people with disabilities as a culturally diverse group in hiring, recruitment, and admission practices.
  2. Create a welcoming campus climate for students with disabilities (e.g., accessible built environment, staff and faculty familiar with provision of accommodations, resources for students with disabilities such as campus organizations, and an administration that is responsive to the needs of students with disabilities).
  3. Re-frame accommodations as a diversity best practice that benefits the entire student body and campus community.
  4. Establish staff and programs that provide streamlined services to students with disabilities once they are enrolled, including clear policies and courses of actions for students to take in order to access needed services and appeal or file grievances, if needed.
  5. Highlight the visibility of staff and faculty with disabilities (who have already disclosed this information) working at on campus.
  6. Support early educational programs and outreach efforts that encourage young students with disabilities to go into the health sciences, similar to current STEM initiatives for girls and people of color.
  7. Integrate disability culture within cultural competency curricula (Thomas Smith, Roth, Okoro, Kimberlin, & Odedina, 2011).

The authors in this book describe how universities can serve students with disabilities effectively and provide recommendations and solutions to complex issues related to accommodations and communication about disability-related needs. As professionals who work with students with disabilities everyday, these authors demonstrate how even the most difficult or seemingly impossible case can be adequately resolved through good working relationships with students, creativity, and flexibility – while maintaining rigorous academic standards.

Diversity by disability matters beyond mere representation—it provides a critical counterbalance to the healthcare experience, benefiting patients, professionals, and communities. For me, it is simply an issue of power and equity.

References

American Association of Medical Colleges. (February 2013). Part II: Medical students or health care professionals with disabilities. GDI Navigator to Excellence: Summaries of Disability Articles in the Journal of Academic Medicine 2001-2012. Retrieved from

https://www.aamc.org/download/328092/data/disabilityarticlesinacademicmedicine.pdf

Brault, M. W. (2012). Americans with Disabilities: 2010. Retrieved from http://www.census.gov/prod/2012pubs/p70-131.pdf

Cohen, J. J. Gabriel, B. A. & Terrell, C. (2002). The case for diversity in the health care workforce. Health Affairs, 21(5), 90-102.

DeLisa, J. A. & Lindenthal, J. J. (2012). Commentary: Reflections on diversity and inclusion in medical education. Academic Medicine, 87(11), 1461-1463.

Disability Rights Education and Defense Fund. (n.d.). Welcome to healthcare stories. Retrieved from http://dredf.org/healthcare-stories/

Long-Bellil, L. M., O’Connor, D. M., Robey, K. L., Earle Hahn, J., Minihan, P. M., Graham, C. L. & Smeltzer, S. C. (2011). Commentary: Defining disability in health education. Academic Medicine, 86(9), 1066-1068.

McKee, M. M., Smith, S., Barnett, S. & Pearson, T. A. (2013). Commentary: What are the benefits of training deaf and hard-of-hearing doctors? Academic Medicine, 88(2), 158-161.

Moreland, C. J., Latimore, D., Sen, A., Arato, N. & Zazove, P. (2013). Deafness among physicians and trainees: A national survey. Academic Medicine, 88(2), 224-232.

Robey, K. L., Minihan, P. M., Long-Bellil, L. M., Earle Hahn, J., Reiss, J. G. & Eddey, G. E. (2013). Teaching health care students about disability within a cultural competency context. Disability and Health Journal, 6, 271-279.

Smeltzer, S. C., Avery, C. & Haynor, P. (2012). Interactions of people with disabilities and nursing staff during hospitalization. American Journal of Nursing, 112(4), 30-37.

Smith, L., Foley, P. F. & Chaney, M. P. (2008). Addressing classism, ableism, and heterosexism in counselor education. Journal of Counseling & Development, 86, 303-309.

Thomas Smith, W., Roth, J. J., Okoro, O., Kimberlin, C. & Odedina, F. T. (2011). Disability in cultural competency pharmacy education. American Journal of Pharmaceutical Education, 75(2). Article 26.

Wen, L. S. (2014, October 27). For people with disabilities, doctors are not always healers. The Washington Post. Retrieved from

http://www.washingtonpost.com/national/health-science/for-people-with-disabilities-doctors-are-not-always-healers/2014/10/24/afb632e6-45a0-11e4-b437-1a7368204804_story.html