Black and white image of a middle aged African American woman with long hair smiling at the camera.

Guest Blog Post by Robin Wilson-Beattie: My Abortion Story

On June 16, 2015 Robin Wilson-Beattie shared her story with The Abortion Diary Podcast. Below is the text transcript from the podcast. For the audio clip: http://theabortiondiarypodcast.com/abortion-stories-experiences-disabilities/

Thank you to Robin for allowing the Disability Visibility Project to share her powerful story!

Robin’s Story

Robin: My story actually starts in December of 2007. I had acquired a disability in 2004. I got a spinal cord injury from a birth defect inside my spinal cord, and I found out a week before having to have the surgery done that I was pregnant with my daughter. I had a really, really grueling pregnancy with her. I had some Post traumatic stress disorder from there, because of undergoing physical rehabilitation, because I’m a quadriplegic, but incomplete, that’s why I can walk, but having to learn how to sit up again, feed myself again, do physical rehabilitation while I’m pregnant. With my pregnancy I also had other issues, hyperemesis gravidarum, or I threw up the entire pregnancy and I lost 70 pounds, and just all of that… that was just too much trauma for my body. So I had a hellacious experience with pregnancy. I loved the end result. I loved the fact that I was growing a life, and I was extremely looking forward to my daughter, but the whole experience was really, really horrible. As far as pregnancy goes, I had pre-eclampsia, my child was delivered 5 weeks early because of the pre-eclampsia. I ended up getting an infection where I was in the hospital for an entire month after giving birth to her, because I got an infection from the C-section because my body’s defenses were just that low. I think pregnancy, and even now like 11 years later, here I am and my insides will draw up because it was really that horrible of an experience.

Now, fast-forward to 2007, and my daughter was 3 at the time, yes… she was 3. To make a long story short, I got pregnant from a relationship where I was trying to rediscover who I was sexually, and I found somebody to “play” with, and I was stupidly was participating in unprotected sex, and I got pregnant. The hyperemesis kicked in a lot sooner even than it did when I had my daughter previously, but what was also complicating matters was that I was married at the time, and it was not my husband’s child. Also I am a person with a disability, where if I was going to have a pregnancy, that mean bed rest for the entire pregnancy, or being in a hospital. I had already experienced being in a hospital for most of my pregnancy, and it is not where you want to, you do not want to do that, not unless you have to. If it had been my husband’s baby, I might have thought about doing things differently, but as it was, it was very, very stressful, physically, mentally, emotionally, and the father of the baby, he was married, and his wife had no clue. I mean, I’m not proud… I mean, I am poly, but at that time I didn’t realize that there was an actual name for how I loved. When I say poly, it means polyamorous, which for me means that I want a Primary, but I also need secondary partners sometimes to get things that I cannot get from my Primary relationship. This is what I was referring to when I said “playing” because I like to participate in some BDSM activities that my husband did not, which is how I ended up on Craig’s List and … I was kind of one of those times, but it was one of those “live and learn.”

I ended up deciding that I wanted to terminate the pregnancy. I went with a really, really close friend. We went to the clinic. I got the money together, and I got there, and I was terrified. I looked it up on the internet, I had called a couple of friends, because it wasn’t something like I could go on Facebook and say, “Hivemind, hey, where’s the best place to get an abortion in town?” That’s just not, it’s just not… because I love babies, I love being a mom, and it was killing me that I was making this decision to not go through with the pregnancy when I have one child that is living, and what a joy she is. I love the fact that I love being her mother, however, because I love her is another reason why I decided I had to do this was because I would be potentially robbing her of a mother, especially with me knowing that I would probably have to be in the hospital for the entire pregnancy. That would take away from my responsibility of caring for her, and life at the time, because I began thinking about the economic repercussions all of this was going to have, and this is also around the time of the economic collapse and the recession. I knew that this was just… I could to bring a child … I couldn’t do it to myself physically, mentally… it just… I kept having that song “Love Child” running through my head for some reason, and I was just like, no, I cannot do that, I cannot do that to another human being. I had to think about what would be fair. I went to a traditional abortion clinic, and because of my disability, they would not perform it. I had too many, basically, comorbidities because of the spinal cord injury. I was not just their run-of-the-mill typical patient. Because of my unique medical history, they were like, I need to go to a hospital and get that done. Luckily, I had private insurance, I contacted my insurance company, and told them what was going on, and luckily they have a nurse on hand. I realize that I was very fortunate in that aspect. I got to have my abortion done in a hospital in a surgical suite. I was put out, I woke up, and no more … but it was like scheduling surgery. I think it was even recorded as a D and C. I was about 7 weeks along.

The bad thing about it though, I mean I still had to go through some of the typical … Georgia has laws where you have to have and ultrasound done and I have a picture of that ultrasound. I have kept it for me. It was something … it just needed to be a reminder, but it also inspired me to get to where I am today. I promised myself, I promised basically the life… I do not know why, I’m just sharing my feelings, but I felt like I wanted to owe it to that potential soul to make something of my life, because if I had made this decision to not go through with this, then I need to make that sacrifice count for something. I never thought that I would be a person that would have to make that kind of choice. The doctor though that I went to, he started asking me all kinds of questions that really didn’t have anything to do with the abortion. Like “have you had a breast exam when you go to the OB/GYN?” and he took it upon himself to start feeling up my breasts, and I took it because he was the only doctor that was listed that would do that procedure in the hospital, and it be covered by my insurance. So I just, you know, just put that in the back of my mind, just like… I deserve this. I am a horrible person for getting knocked up by a married man, so this is your punishment. This is what you get. My best friend took me, and I am really grateful for that, she took me there. It was an early morning appointment, then she took me back home.

I had this done on January 9th, so I had to go through Christmas pregnant, knowing that I was going to have an abortion. I had told my mother, because when I first found out I was pregnant, I was kind of excited until I realized that the baby was not my husband’s, then I wasn’t so excited. So I had told my mom, and my mom was really trying to pressure me to not have the abortion. They were trying to offer me alternatives like I could give the baby to them to rear, which I was like uh, no… that’s not an option; or to one of my sisters, and I was like, that is also not an option. I was like, how would I ever explain to the child that yes, I kept your sister, but I didn’t keep you. I just started trying to think about what this child, or person, because this would be another person, what this person’s life be like? What kind of things would this person have to overcome as a result of me bringing this person into the world? As far as what I felt like this person had against them, I was just like, no, but I vowed… I looked at it as a sacrifice, and I was like, I promise I will make this count for something; that your sacrifice is not in vain.

There were a lot of repercussions from it, like my relationship with people. I am very open, I am a very open person, but this experience taught me not to be as open because I used it to try to … I told another mom-friend what had happened, and she was horrible. She wanted to turn most of my mother’s group against me, she called me vile and disgusting. It was horrible. It lead to this bullying situation, and cyber-bullying, and you would not think grown women and their fucking 30’s would deal with this shit, but yeah. But that’s what inspired me to get involved in making a positive change for things, and to start doing more things in the disability community.

I had a lot of shame. I went to a lot of therapy. I had to go to the mental hospital a couple of times because I thought that I was a horrible, vile, disgusting human being. I tried to kill myself. I had so much guilt and shame over having the abortion, I mean, I didn’t regret the fact that I didn’t bring a person into this world that would have had a horrible situation in life, and I do not regret that at all. I do not regret protecting my own health, and a couple of doctors had also said you have no business being pregnant. That was also another thing that made it, for me, feel better. On the same token, part of me was like, “Oh, you have a disability so you’re not supposed to be pregnant in the first place.” I was like, do not get me started on fucking eugenics, do not sit there and try to tell me that just because I have a disability that I can’t do this, because I have proved that I can do this. I could be dying and do pregnancy. I proved it, doesn’t mean I want to do it again. But you cannot take that choice away from me. You can’t. I understand that not everybody is meant to have lots and lots of kids. That’s why women used to die in childbirth and stuff like that. It is really hard on the body, especially when you are not going to have a typical pregnancy. Like I said, I had already had so many problems and trauma with my other pregnancy that I was able to carry to term. Just the thought of doing that again, was no, but you still have picked up all of this guilt from society. You know, everything that you read in our society, even though I have always marched and did things for women’s rights, the first big huge abortion march in, I want to say it was in 1992, 91 or 92, was called “March for Women’s Lives.” It was the first one, and it was a big abortion march in DC, and I was in college. I went and participated in that. I carried a sign that said “BUSH, stay outta mine!” it was the first Bush. But I never thought that that I was going to actually have to exercise that choice one day.

I always thought that I was smarter, that I was educated, I knew how to use contraception; I had access to contraception. Yet, I got pregnant. I had a lot of guilt and shame over me feeling like I personally failed myself, that I failed my family. The actual abortion itself, the only day, the soonest that they had available and all I could think about was I had to get this done now, as soon as possible, was after the New Year of course, and it was on my mother’s birthday. I now know that’s why I have the date forever sealed in my head is because it’s also the same day as my mother’s birthday. So my mother’s birthday is the anniversary of my abortion. That’s maybe one thing if I could maybe go back in time, I would find a way to delay it a couple of days or whatever, but at the time, all I could think about was that this needs to happen and I need to have it happen now, because I was like, I can’t, I am just going to feel more and more guilty, and I was already starting to throw up so bad, that I had burned a hole in my esophagus. I mean it was bad. I was only 7 weeks along, and I was just throwing up that violently. It was bad.

I felt guilt and shame over the years. I felt guilt and shame for robbing my child of a chance of having a sibling. I would look in the back seat of my car, like I’d see my kid sitting in her car seat and I’m like, inside, I’m like there should be 2 car seats back there. There should be, and every year about the time that child would have been born, I will sit there and I will think about the child and be like, I know, he or she would have been 6 years old. My child, that’s the one thing in the whole world that she has wanted more than anything is a sibling, but I’m like, I’m not able to provide that. Honestly, but now as I’m older and I know myself better, I know that I also have the mental strength and ability to be the mother of 1 child, because children are a lot of responsibility and a lot of work, and a lot of mental strength. I do not have that to effectively bring up another child as well. I could easily see where I would become a person with all kinds of problems. I also wouldn’t be able to have the career that I have now, where I can go and I can educate, but I especially want to talk to other people with disabilities about these sort of things. I am hoping that by sharing this story, that it would bring a different kind of awareness to some of the reasons why people choose to have an abortion. It’s not so black and white.

It is something that is with you for the rest of your life, at least for me. I do not know what it’s like for every person, I cannot speak for every person that has had one, but for me personally. I mean, I’m relieved that I do not have another child, and I am relieved that this choice was out there for me, that I was able to take advantage of that choice. I 100% know that that was the right thing for me to do, and I don’t regret making it at all, but I do regret how much I beat myself up, and how much time and energy I wasted. I also was very… it helped to give me more empathy, I feel, for other people. Nobody is perfect. No one goes through life without making mistakes. I looked at is as, okay, this was your wake-up call. This was like okay, you’ve got to get your stuff together. If you are going to be sexually active with other people rather than just in one primary relationship, then you need to make sure that you are properly protected, and that you’re not running that risk. It also let me definitely know that I never want to experience pregnancy ever again. I am glad that I didn’t have to do that. I feel that I did make it count for something, it wasn’t in vain. I used that as the basis for what I do now which is sexual education and disability.

I feel that especially, I wonder if my experience in the medical world might have been a little different on how I was encouraged to have an abortion because I had a disability. That made it a lot easier for the medical professional people to feel like, well, okay, we’re doing the right thing for this person. I felt supported as far as medically. I did not feel any guilt at all. Only one time when I went to the emergency room in Arkansas at a catholic hospital, because I was throwing up so bad, and they were like you’re pregnant, what does your OB/GYN say blah, blah, blah. Why isn’t he giving you this? I was like, this pregnancy is going to be terminated next week. I’m not going to be pregnant. How I was treated by the medical staff once I said that, no. It was ugly. I forgot that it was something extremely insulting that the nurse said to me… it was like, “since you’re going to kill your baby anyway” and yeah… I remember my husband was there and he was like, what the hell? That was a horrible Christmas. It’s definitely a life experience I do not ever want to repeat again, and it’s something I have talked to my daughter about. She is 10, but I taught her because I feel like talking about this is an important part of sexual education. I think that because we do not talk about abortions, because we keep it in the shadows and shame, that we just perpetuate this culture where women feel like they have done something horribly bad, horribly wrong, and they’re horrible people for choosing this choice. I talked to my daughter, and I’m like this is why if you do not want a child, this is why contraception is very important. These are some of the repercussions that I have had to suffer. These are the consequences of my actions. So this is what I had to do, and these are the changes that I had to make in my life, but you know, having to take that kind of sexual responsibility.

This is the first time that I have ever talked about this with someone that I don’t know. This is very interesting. As I am talking about my experience, it’s raising a lot of not so much questions, but it’s kind of though, it’s a bit of a relief, and also that I also see it, I hope that maybe somebody else learns from my story. I regret the choices that led me to the point to where I needed to make that choice, but I do not regret making that choice. It was completely, 100%, the right thing for me to do.

Michelle:         As someone who works on disability and sexuality, when you were pregnant and were choosing abortion as the right option for you, did you find any resources for yourself?

Robin:                  No, absolutely not. I tried to look up information about disability and abortion, yeah, no. Those resources aren’t really out there. I read thing about where people with disabilities were forced into having abortions. I read where people with disabilities were forced to be sterilized. So was it West Virginia, or Virginia, where they’ve had to pay monetary damages for sterilization, but yeah, North Carolina too, but Virginia, this was just the other day, for people with disabilities that were forcibly sterilized. But yeah, the information wasn’t there. I would like to find a way to incorporated more of this into the education that I do, but in a way, and I would like to use it… I want to somehow use this … I do talk about contraception and how important it is, because there really isn’t the support or resources, I don’t know if there are things now, because I haven’t really looked for it. It’s taken a while for me to get in this mindset of … if you had asked me, even a year ago, if I would ever talk about this on a podcast, and I would have been like no. (Laughing)

I am now at that point where I am going you know, this is important enough that I feel that other people need to hear this perspective. Especially because people with disabilities are treated like we are not, a lot of times, by medical professionals or other people, like we are not complete people. Like we have something missing. When it comes to reproduction, we are encouraged not to. We are encouraged not to have children. We are encouraged not to reproduce. That’s why I’m like, from the medical community, I felt like I was getting that support, but it just was one of those instances, but then it made it okay for some of my friends, even my friends that are very very pro-life, anti-choice, they were like, oh well, it’s different for you because you had so many problems. I even bought into that for a while, that my situation isn’t the same. But everybody’s situation is different. Nobody’s situation is the same. And that’s the thing, nobody’s situation is the same. We are all unique, and we all have … there is no one reason why people choose to have an abortion. It takes you being very honest with yourself about what you are capable of, or what you can do. I think it actually shows a lot of courage. As a person with a disability, I was just really, really scared. I didn’t want to do that.

Michelle:         Why do you want to share your story?

Robin:                  Because I feel like it’s important. It’s important to include the experiences of people with disabilities in all conversations that have to do with being a human being, because disability is a natural part of the human condition. You can acquire a disability. You can be born with a disability, and you live long enough, you join the club as I call it. But it’s important that people know that as a person with a disability, yes, there may be some different factors that you have to think of, and you might have to go about it in a different way, because yeah, you might not be able to just go to your local clinic. You need to do your research, and you need to find where you can go, and what can be covered. Like I said, I was very fortunate because I did have health insurance that covered it because of my medical conditions. If I had not had those disabilities, those medical conditions, I’m not sure that it wouldn’t have been covered. However, because getting turned down by the clinic. Because they were like, look, no, you have all this going on. We can’t do it. Then that’s why I had to go the route of going to a hospital and getting it done by a doctor in the hospital.

Michelle:         Is there anything else you would like to share?

Robin:                  That even though I do public speaking for a living, this was extraordinarily hard to talk about, because I am being, I feel really vulnerable and really exposed, but I also feel really liberated and very proud. I hope that my story helps someone else. I hope that maybe it’s given someone a different perspective on why someone would make this choice, and also to just add to the voices of women who have disabilities and having to make this choice.

Michelle:         Do you think that both pregnancies, like your pregnancy with your daughter and the birth, and then being pregnant again, going through an abortion, do you think that was like a catalyst to getting you involved in disability and sexuality?

Robin:                  It most definitely was. It was. That’s when I was like, because of my own frustration with trying to find resources for the sexual activities that I like to participate in, and I was trying to find things on how to use adaptive techniques for the sexual play that I like to engage in, and I wasn’t finding it. Then wanting to find more resources and information when I needed to have the abortion, and not finding anything that was disability specific, that’s what it was like. It was one of those, “oh, well if I can’t find it, then I need to help create it, because I cannot be the only person in the world looking for this.” But also, it just made me, it kind of galvanized me and made me realize that yes, I want to be involved in somehow making change for people with disabilities in some way. It lead to sex, because I’m very open, and I’m open to sharing and learning, and I want to teach people, and teach people to work with themselves in coming up with solutions and adaptations, so that they can enjoy a happy and healthy sex life. And part of having a happy, healthy sex life is okay, well if you’re reproductive organs are in working order, then the consequence is you could become pregnant. You need to think about, okay, am I going to be able to do this, and if so… that’s a really important part, but yeah. I think that this experience definitely help to shape and influence me to become a disability and sexuality educator. Most definitely. I would say it had a direct impact. But it’s what inspired me to have a career and also it showed me that I needed a community, I needed to find other people with disabilities to talk and share experiences with, and to have that kind of community.

That’s how I started becoming involved in advocacy and I really feel like it helped lead me to, it’s kind of weird to say that, but the abortion kind of gave me the, it was the reason, it was the main impetus for me getting my shit together, so to speak, and actually doing something with my life, making it count. I did. I wanted to turn what could have been one of the most negative experiences in my life into being something positive. I believe that and what I’ve learned in therapy is, because I have done a lot of cognitive behavioral therapy, and that’s what finally worked, just changing my thinking as far as… okay, so this happened. How can I improve things? What do I need to let go? What kind of changes do I want to see being made? How can I help bring some of that about? I found that by talking, by educating. I found that I was able to discover my gifts. That was the other thing, yeah. Because if it hadn’t been for this abortion, I wouldn’t have found the disability community, because I wouldn’t have gone out to probably seek the community at that time. And I wouldn’t’ have fallen into my career. I wouldn’t have seen where this need was. And I definitely wouldn’t have started participating in grass-roots activities where I talked about my sexuality with a disability because I felt like people needed to know.

As always, for more information about The Abortion Diary podcast, visit us on web at TheAbortionDiary.com or email me with your questions or comments. If you would like to share your story, send me an email at Melisssa@TheAbortionDiary.com or visit our website and click on the “Share your Abortion Story” and fill out our contact form. I am currently in Birmingham, Alabama, and look forward to visiting you in your city or town soon. If you are a fan of the podcast and would like to help us reach more folks, please subscribe on ITunes, and write a review, or rate this podcast. Your reviews and ratings will help us grow in the ITunes rankings, and reach more people. I would also love to hear from you. You can also follow The Abortion Diary on Twitter or Facebook, and The Abortion Diary cannot continue without your support. Support The Abortion Diary by making a tax-deductible donation to us on Fractured Atlas, by buying some of our wristbands or totes on Storeenvy.com. Thank you to Karen and Scott for hosting me in Atlanta, GA so I could record this story. If you would like to host me in your city or town, please do send me a message. Special thanks to you for listening. I will be back next week with a new story. New stories are posted every Tuesday.


 

Robin Wilson-Beattie is the proprietor of sexAbled (www.sexAbledwithRobinWB.com), teaching the world to embrace and explore your sexuality,  regardless of ability. She is a member of the Association of American Sexual Educators, Counselors and Therapists(AASECT) and the Women of Color Sexual Health Network(WOCSHN). Robin has been involved in sexuality education and awareness since high school. After acquiring a physical disability, she began in 2008 speaking on sexuality and disability topics and issues. Robin has done presentations and speeches at conferences, medical schools, and disability organizations. She also consults with individuals and organizations on issues of adaptive sexual support. Robin is an Ambassador for the Christopher and Dana Reeve Foundation, and a nationally recognised self and systems disability advocate.  She is a deep-fried Southern girl, Sex Geek, Burner, comic book nerd,lover of all things Quentin Tarantino, and proud Mama of one amazing daughter. Follow Robin on Twitter @SexAbled, or like sexAbled on Facebook.

#ADA25: A note of gratitude from the DVP

If I could type this a million times, I would type: THANK YOU!!! 

THANK YOU to all the people who supported the Disability Visibility Project (DVP) when it launched last June.

THANK YOU to the amazing people at StoryCorps who supported this community partnership with genuine enthusiasm and care.

12 months went by fast and it is thanks to the disability community in the United States and abroad who embraced the idea that people with disabilities have stories worth telling and lives that matter.

The Disability Visibility Project coincided with the year-long lead up to the 25th anniversary of the ADA, using it as a springboard to have people with disabilities reflect about their past, present and future. The response was resoundingly clear: there is a need for people to tell their stories in their own words centered on the lived experience of disability.

Since June 2014, the Disability Visibility Project…

And this huge thing happened on July 20, 2015:

Image of President Barack Obama in the Blue Room of the White House standing next to Alice Wong who is on a screen in a telepresence robot.

President Barack Obama greets Alice Wong, Disability Visibility Project Founder, via robot, during the Americans with Disabilities Act 25th Anniversary reception in the Blue Room of the White House, July 20, 2015. (Official White House Photo by Lawrence Jackson)
This photograph is provided by THE WHITE HOUSE as a courtesy and may be printed by the subject(s) in the photograph for personal use only. The photograph may not be manipulated in any way and may not otherwise be reproduced, disseminated or broadcast, without the written permission of the White House Photo Office. This photograph may not be used in any commercial or political materials, advertisements, emails, products, promotions that in any way suggests approval or endorsement of the President, the First Family, or the White House.
This photograph is provided by THE WHITE HOUSE as a courtesy and may be printed by the subject(s) in the photograph for personal use only. The photograph may not be manipulated in any way and may not otherwise be reproduced, disseminated or broadcast, without the written permission of the White House Photo Office. This photograph may not be used in any commercial or political materials, advertisements, emails, products, promotions that in any way suggests approval or endorsement of the President, the First Family, or the White House.

Here’s a summary of the White House visit: http://disabilityvisibilityproject.com/2015/07/21/ada25-at-the-white-house/

And a video from the White House about the ADA celebration:

Looking ahead 2015-2016:

  • Fall 2015: Exciting opportunities for the disability communities in Seattle, Sacramento, Los Angeles, and Tuscon when the StoryCorps Mobile Tour arrives to record the stories of everyone in those cities.
  • The Disability Visibility Project is extended until December 31, 2015. The DVP will continue to add new content from the archive throughout 2016, but outreach and collection of oral histories will end in 2015.  There is the possibility of re-starting the DVP at a future date.
  • Winter 2015: DVP will receive the entire collection of stories as the project winds down. 2016 will be focused on the gradual posting of short audio clips with text transcript for each oral history on this website.
  • The DVP will also look for funding opportunities to finance the transcription of the audio clips and other costs associated with our work.
  • The DVP will develop creative materials featuring stories that can be used for educators, activists, students, and the general public such as comic strips, lesson guides, toolkits, etc, separate from the DVP interviews.

In conclusion

It’s a little strange thinking the concept for this project started about 2 years ago and how things have taken a life of its own. This has been the most exciting endeavor I’ve ever taken on.

I’m humbled to be on this most excellent adventure and that there are so many people along for the ride.

Onward and upward!!

Alice Wong, Founder and Project Coordinator

 

Image of two white women in a recording studio. The one in the center has a mohawk w/ pink highlights. She is wearing glasses. The woman on the right side has short red hair and she is smiling.

DVP Interview: Shannon Des Roches Rosa and Liz Henry

Shannon Des Roches Rosa interviewed her longtime friend Liz Henry on April 11th, 2015 for the Disability Visibility Project at StoryCorps San Francisco. Below are condensed excerpts from their conversation.

On becoming disabled

Shannon: So, let’s switch gears a little bit and just, also noting that this is for partially, for the Disability Visibility Project, so I was wondering if you could tell me about your disability.

Liz: Sure. I have the perspective of becoming disabled as an adult.

Shannon: Mm-hm.

Liz: Which I think you know, makes a really big difference in disability communities.

Shannon: Mm-hm.

Liz: Just how you view everything, and how we view each other and different ways of being an ally.

Shannon: Mm-hm.

Liz: So, I guess around ’93 or so, maybe a bit before. I had some difficulties, but I really had like a mobility difficulty. Lost my job, I couldn’t use my leg, I just had some severe pain and difficulty walking. And ended up, this is a good story of how I got my first wheelchair. I was at the, in San Jose so I had moved to the Bay Area trying to move to San Francisco and I ended up in San Jose, Oakland and then San Jose. And I couldn’t figure out how you get a wheelchair. I couldn’t get around. I couldn’t walk very well even around the house.

Shannon: Mm-hm.

Liz: And I was just completely at sea. At that time, I was somewhat estranged from my family, so I didn’t have a lot of support or contact with people. Who could give me any adult advice, I think. So I’m around 21 or 22, I’m in this hospital having gone through the ER and free intake, and sort of the county welfare hospital, situation.

Shannon: Okay.

Liz: And them saying that without a diagnosis they couldn’t hook me up with a wheelchair. And they wanted to refer me to neurology, but couldn’t do it for nine months, and all kinds of strange, you know stuff.

Shannon: Meanwhile you couldn’t walk.

Liz: Meanwhile I couldn’t walk. [CROSSTALK]

Shannon: Yeah.

Liz: I couldn’t manage the practicalities of my life, and I didn’t know what was going to happen to me. The social worker, whose office I ended up crying in, at some point just went, “You know, nothing is stopping you, I would never suggest this, nothing is stopping you from just leaving the hospital in the chair you’re in right now.” [LAUGH]

Shannon: Really?

Liz: So, I stole the hospital wheelchair. I stopped crying and went, “You’re right. My God, you’re a genius,” and I just rolled out of the hospital, and got someone to pick me up and went home. So with that wheelchair, a horrible Everest and Jennings, you know, 90-pound clunker.

Shannon: Yeah.

Transitioning to life as a wheelchair user and connecting to the disability community

Liz: I did manage to sign up for some classes at De Anza College. I get some help from my parents. I think I was on unemployment at the time. And then at De Anza College, I was taking some Unix system admin classes and things like that.

At De Anza College I found the Disabled Students Union, and I did not know how lucky I was. Because that was some hardcore disability, Bay Area disability activist people that, I don’t remember any of their names, but I now know, with this perspective of now, I know that they must have been hooked in and they had been around the block. And they were great to me, and I was just starving for any, any connection with any images I would get. Issues of New Mobility magazine, which was basically the silliest thing ever, like full of ads.

Shannon: Okay.

Liz: And I was just like, so happy to see the ads with other people in wheelchairs in them. A guy who was a wheelchair basketball player at De Anza gave me his old Quickie 2 which is my red wheelchair that was, I loved so much and that changed my life for, so much for the better. I had a ultra light weight amazing wheelchair. It looked cool.

There I was with my little mohawk, like, toddling around the bay area. It was great and the other thing I would say about that time in the 90s is that I had deep connections with like, the Radical Faerie communities in San Francisco and around the Bay Area and I think, was also fortunate in many ways. So, of course, the queer communities of San Francisco had a lot of experience with people having health difficulties because everyone was still dying.

Shannon: Mm-hm, yeah.

Liz: And that, when I moved here, it was still the tail end of, like, really medications were not very effective and so a lot of people we dying and people were organized to do care for each other in the community and what that kind of meant for me is that I had a model of social approaches to illness, disability, and care, and interdependence that was a positive model and not a, you’re helpless and should be taken care of model but a very inclusive attitude. So I could show up in my wheelchair and I would be included in things and people were very thoughtful.

Shannon: Oh, that’ s great.

Even if stuff wasn’t 100% accessible. People didn’t freak out, and there were other disabled people around.

On changes in mobility and disability

Liz: Now I have a different perspective. I did, I was walking better and better. I got rid of the wheelchair in 98, maybe and would walk with a cane and had jobs where I had to be fairly active, doing IT, and I was at the University of Chicago, doing IT and doing things like pulling cable through the ceiling.

So I became more and more active, walked better and better. I got pregnant, a few times, resulting in my son, who’s now 15…So from about 2000 to 2005, I would say, I was pretty stealth. Like, sometimes I would turn up on crutches. I couldn’t really go around saying I was disabled anymore.

Shannon: Mm-hm and that’s when I met you.

Liz: But I still felt those connections and I would sometimes talk about it or I’d end up talking, something that means that, in a party, I would go lurk at the edge of the room with somebody who’s 80, because I figure they’re the most interesting person to talk to and nobody else is talking to them and, you know, I feel more solidarity with them in some way. Like that is who I would end up next to on the bus or whatever… I felt like I had sort of, the problems of passing, if you know what I mean.

Shannon: Got it, yes I do.

Liz: 2005 I ended up re-using wheelchair again. And I thought it may be temporary or it may not. Turns out it has not been temporary. I’ve had some periods of walking a little better or being more active or being able to kayak or, even, like, I tried riding a bike a little bit. I ended up [COUGH] with difficulties in both ankles. Is this too much detail?

Shannon: No.

Liz: So I ended up three years ago getting much worse, having to go from manual wheelchair use to scooter. I can still use the manual chair sometimes, but I can’t really sustain it, I can’t really get around. I can’t drive anymore. My ankles aren’t doing it. So I am now in San Francisco proper, depend on public transit and, of course cabs.

On having a cool scooter and public interactions

Liz: [LAUGH] And I have my lovely scooter. It’s tiny and folds up and looks slightly unusual, so people stop me constantly on the street and talk to me about my equipment…Like, everyday.

Shannon: I bet.

Liz: I can’t leave the house without having at least one conversation about my scooter and in a, usually in a positive way. It’s a little wearing, but I feel it, that it’s a daily activism. Like, people are asking for themselves or for a relative…I think it’s interesting that they picked me to talk to about that issue when there are people with disabilities all around them perfectly visible, but they, I think for several reasons find me possibly approachable, or, yeah. I think the, the purple mohawk and the class markers help in some way.

Shannon: Mm-hm, okay. It makes sense.

Liz: I want to say too, blogging and ties with disability communities online have been important to me. So for instance, finding GimpGirl, it’s run by Jen Cole and a bunch of people and finding the people who support them has been great for me and seeing what they do online to support each other, it’s been pretty amazing.

Shannon: Community is critical. It really is. I would say. So I think you’ve already talked a little bit about my next question which was, how your disability has affected your day to day life. But is there anything else you wanted to add?

Liz: Day to day life, I mean, sometimes I can’t leave the house, really. Or I’m, you know, things vary a lot. So, you know, I have the experience of having extended periods of time where I’m basically in bed. And have to adjust my experience, my expectations of the pace of life.


Shannon Des Roches Rosa is Senior Editor at Thinking Person’s Guide to Autism. She’s also a Shot@Life Champion, BlogHer contributing editor, writer, parent, geek, cheerful grump.

Twitter: @shannonrosa

Liz Henry works at Mozilla as their Firefox Release Manager. From her blog:

My latest book is Unruly Islands. I describe it as anarchafeminist techno-utopian poetry. It was published in 2012 by the Seattle feminist science fiction publisher Aqueduct Press. Read it – it’s completely awesome.

Blog: http://bookmaniac.org

Twitter: @lizhenry

#ADA25 at the White House

On July 20, 2015, President Obama spoke in the East Room of the White House about the 25th Anniversary of the Americans with Disabilities Act. Many members of the disability community attended the event including Alice Wong, Founder and Project Coordinator of the Disability Visibility Project.

Alice attended the event remotely using Beam Pro, a telepresence robot that allows a person to stream live with a webcam and move around simply by clicking the arrows on a laptop’s keyboard. Apparently, Alice was the first person to use this type of device in the White House.

Some press coverage:

http://www.engadget.com/2015/07/21/obama-white-house-telepresence/

http://www.theverge.com/2015/7/21/9011461/president-obama-telepresence-robot-white-house

http://gizmodo.com/5-times-obama-met-with-robots-1719323159

http://www.wired.com/2015/07/obama-telepresence-robot/?mbid=social_twitter

See below for a few images from Twitter:

Photo of two Asian Americans. On the left is a middle-aged Asian American woman wearing a black hoodie and red turtleneck. On her right is a younger Asian American man with short hair and wearing a navy shirt.

DVP Interview: Alice Wong and Tony Wong

Alice Wong interviewed Tony Wong (no relation) at StoryCorps San Francisco on July 2, 2015. Below are edited and condensed excerpts from their conversation for the Disability Visibility Project.

On Tony’s birth and his mother’s difficult delivery

Tony: Yeah, that’s why when I was born, my whole body was blue color.

Alice: Wow.

Tony: Without the oxygen.

Alice: For so long?

Tony: Yeah, for so long. So my whole body was blue color, and I could, I could not quite because everybody, every baby, when they come out, they were cry, they will the son, you know, but I didn’t.

Alice: Wow.

Tony: And then I was sent to the oxygen, the emergency room for about half a year.

Alice: So you stayed in the hospital? For half a year?

Tony: Yeah.

Alice: Your first half year of your life.

Tony: Yeah.

Alice: Wow, that must have been really stressful for your parents. They must have been very worried about you.

Tony: Yeah.

On growing up in Hong Kong with cerebral palsy

Tony: In Hong Kong when you have a disability, your life is completely different. You got the society for label you as a disabled and then when you go out, your life, your school, my life my school, my pre- school, my elementary school, all go to the special education school. It’s the school for all for the people with disability. You cannot go outside in the society [and meet other non-disabled students].

Alice: So even though it’s in the 80s, and you’d think by now many countries would have mainstream or integrated classrooms. So you’re saying that in Hong Kong, you were just completely segregated at the very beginning, throughout preschool and elementary school. Right?

Tony: Yeah…So when I was kid when I aware of something I’d always be labeled as a disabled person. So that’s why I feel I am different, most different from other people and me. Because in Hong Kong when I was younger, I didn’t walk very well, I needed to hold someone’s hand to walk about to 10 years old.

Tony: So when I go out to the street, I need to hold my mom’s hand and then a lot of people look at me. Right. You know look at me on the street and they are all like, “Why does all this guy walk like that?” They feel very skittish and people sometime feel a little bit intimidated and the Hong Kong the special education school is for whole day. From 9 o’clock till 4 o’clock.

Alice: Yeah.

Tony: You know, 9 am to 4 am and then the classroom is very small, only seven people. If seven, it’s still there, it’s still there.

Alice: So you got a lot of attention.

Tony: Yes.

Alice: So in a sense it was kind of good, right?

Tony: Yeah, yeah, yeah the school and for summer I have a lot of classmates, same as you…Yeah, and some students will use same classroom from Grade 1 to Grade 11.

On becoming more independent

Tony: I feel in Hong Kong it’s very difficult for me to be independent.

Alice: And why is it harder in Hong Kong?

Tony: Because the community is very harder, very competitive… [and] it’s very inaccessible in Hong Kong. And also I go to special education school, but we saw has been really limited. We saw the support has very limited. And then I feel very hard, very difficult to be independent. And then so I feel in Hong Kong very hard, very difficult, but I am lucky here…[in Hong Kong] when you finish the middle school, you need to take a bigger exam…if you passed the exam, you continue. If we don’t pass the essay, you need to get out for school. So we need to find a job by ourselves or we need to go to some disabled center but the salary is too low.

Alice: Right, segregated [employment] and low wages.

On transitioning to life in the United States and in a mainstreamed school for the first time
Alice: So tell me what was it like for you when you came here, not knowing English that well and having CP and thrown into an American classroom with other mostly non-disabled kids, what was that like?

Tony: I loved challenge too. And I always state that as a disabled in the USA you need to have good English to do good, to be successful. If your English is not good you still has a hard time in the USA. Especially as a Chinese because I feel in the Chinese culture, the people with disability is not very welcome.

Alice: So you had to jump into high school culture after only being in elementary school in Hong Kong. So you kinda missed this whole middle years of socialization and culture. Wow so, was it just weird and scary or?

Tony: Yes, very scary. Because in Hong Kong I just finished elementary school and when I come here, they reassessed me to grade nine, ninth grade high school.

Alice: Yeah but did you have a lot to catch up on?

Tony: Yeah a lot of pressure and friendships because English is slow and then the time when I come here. I assigned to the Newcomer High School. They are for high school for one year for the Newcomers [recent immigrants to the country] but I feel many of them [students] didn’t know about disable. They didn’t understand about disability.

Alice: Okay, so it’s kinda this double-thingy, where, in the Newcomer’s school, while you’re among other Chinese-speaking people, you were the only disabled kid. What did that feel like to have gone from a community where you were with, I guess primarily students living with disabilities to this school in another country, and you’re the only student living with a disability?

Tony: In these times, even though I had a lot of special care, special support, special care and then I feel I was very different. I feel really scared. Because, I told you about Hong Kong, that people don’t know disabled people. When you go out and I go out and people look at me [like] I was scary as odd people. So I didn’t know very much to interact with the people-

On interactions with other Chinese immigrants with disabilities

Alice: Have you met a lot of other newcomers with disabilities or Chinese American? So tell me about some of the people that you’ve met and have you been able to form a community in terms of Chinese speaking disabled people.

Tony: Yeah, I know many…I know many Chinese disabled people immigrate here and I support them and I feel, I feel more of them need to take the time to get used to America. I feel they need, this is Chinese American, more of, I feel more of Chinese American, they don’t accept they have disable.

I always remember I help a Chinese disabled before but he feel very upset. You know why. He feel upset because he feel I need to label him as a disable. He didn’t want to be a disable. He want to be a normal people. Even though he has physical disable.

Alice: …that’s why sometimes I think it’s really hard outreach wise. Let’s say like a disability organization is trying to do outreach and yet you have to be able to identify and understand that you do have a disability and it’s okay. And that you have rights and there are services and lots of things available but I think it takes that step of acceptance. Which is very hard in people in Chinese cultures so. And larger I think the broader Asian American communities.


 

Tony Wong is a Chinese American immigrant with a disability. He emigrated from Hong Kong to the United States in 1998 at the age of 14. Tony received a Masters in Social Work from Cal State East Bay and currently works as a social worker at a mental health clinic in San Francisco.

 

 

7/21 Community Dialogue on Assistive Technology in San Francisco

From: http://www.ilrcsf.org/events/community-dialogue-on-assistive-technology-needs-of-people-with-disabilities/

Community Dialogue on Assistive Technology Needs of People with Disabilities

Tuesday, July 21, 2015
5:00 pm – 6:30 pm

Independent Living Resource Center
825 Howard St.
San Francisco, CA
94103

Are you a person with a disability and/or a maker/hacker/developer interested in assistive technology and accessibility?

Do you have an idea for new technology that could impact your life or the lives of others with disabilities?

The Independent Living Resource Center San Francsico and the Disability Visibility Project invite you for a conversation on innovation in technology that can impact the lives of people with disabilities. In partnership with Google.org, we believe nothing should be created, designed, or built without input from actual users with disabilities.

A representative from Google.org will be onsite to discuss how you can participate in a bootcamp and hackathon to be held by Google.org, the charitable arm of Google as part of their Impact Challenge on improving access for people with disabilities later this summer. This hackathon is modeled on one by Tikkun Olam Makers.

To RSVP, contact erin@ilrcsf.org

If you can’t make it in person, A Google hangouts link will be available.

NOTE: ILRCSF is wheelchair accessible and provides reasonable accommodations upon request. 3 days Advance notice of your accommodation needs is greatly appreciated. In order to be fully accessible to all people with disabilities, ours is a scent-free office. When visiting ILRCSF, please do not wear any scented products, including perfumes, aftershave, hairspray, etc.

 

Image of two people standing next to each other. On the left is a young white woman with blonde hair tied back in a ponytail. She is wearing a black hoodie and pink t-shirt. To her right is an older white man with a gray beard. He is wearing a blue long-sleeved shirt.

DVP Interview on KALW radio!!

Wow, the Disability Visibility Project is thrilled to hear another story recorded for our project broadcast on public radio. Many thanks to local San Francisco public radio station KALW 91.7 FM for broadcasting this story on July 14, 2015, produced by Allison Lee.

Listen to Jessie and Herb’s story:

http://kalw.org/post/storycorps-fight-disability-rights

Jessie Lorenz, Executive Director of the Independent Living Resource Center San Francisco interviewed her friend and former Executive Director of the Independent Living Resource Center San Francisco, Herb Levine at StoryCorps San Francisco on October 9, 2014.

To read more about Jessie and Herb’s interview: http://disabilityvisibilityproject.com/2015/03/05/dvp-interview-jessie-lorenz-and-herb-levine/

 


 

Jessie Lorenz, Executive Director 

From ILRCSF’s website:

I spend most of my time engaged in fund-raising, as well as exploring possible collaborations that enhance the mission of the agency. I am also actively involved with finance, programming, and facility management. I am a gubernatorial appointee of the State Independent Living Counsel by both Former Governor Schwarzenegger and Governor Brown, and I am a member of the San Francisco Long Term Care Coordinating

For a look at the future of independent living centers, check out their new downtown location at 825 Howard Street, San Francisco, CA, 94103

From their website:

Independent Living Resource Center San Francisco (ILRCSF) is a disability rights advocacy and support organization. Our mission is to ensure that people with disabilities are full social and economic partners, within their families and within a fully accessible community. ILRCSF’s mission is achieved by systems change, community education, partnerships with business, community organizations and government, and consumer directed services. We work to empower individuals and community, so that all people with disabilities have as full, productive and independent lives as they so choose.

ILRCSF provides three services to the disability community: information, support, and advocacy. Specifically ILRCSF programs and services include Information & Referrals services, Assistive Technology education and support, Peer Counseling, System Change Advocacy, Housing Counseling, Benefits & Employment Planning, Individual Advocacy, Benefits Eligibility, Transitioning from Institutional Living, and Self Advocacy Training.

Website: http://www.ilrcsf.org

Facebook: https://www.facebook.com/ILRCSF

Twitter: @ILRCSF

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


Herb Levine, Board Member, Senior and Disability Action

Herb Levine believes that what we do is not as important as who we are. His maternal grandmother was an undocumented immigrant who had to pretend to be part of someone else’s family to get into the U.S. His maternal grandfather came here on the run after a failed assassination attempt on a Czarist official. His father worked partly as an organizer for a CIO union. He was told as a child to do work that built the world, that working to become wealthy was a waste of everybody’s time. Herb says some of his heroes are: Saul Alinsky, a great community organizer; Martin Luther King, Jr., the greatest person who has lived in his lifetime; Abraham Joshua Heschel, a rabbi who marched with MLK and prayed with his feet; Judy Heumann, leader of the independent living movement; Patricia Pascoe, a self-described crazy lady who taught Herb how to live with his disability and never stop believing in a better world. Herb’s work over 45 years was almost all as a teacher and advocate in the disability rights arena. He worked for over 30 years at the Independent Living Resource Center of SF, which he calls a gift he always tried to be worthy of. Mantras Herb tries to live by: Nothing about us without us. When faced with an impossible dilemma, don’t try something else; just get past it, anyway. Answers are easy. Good questions are hard, but more valuable.

 

Q&A with Cathy Kudlick and Fran Osborne, Part Two

For the first time, an exhibit on the landmark 504 sit in that took place in 1997, “Patient No More: People with Disabilities Securing Civil Rights,” in will be shown July 26-December 18, 2015 at the Ed Roberts Campus, above Ashby BART at 3075 Adeline in Berkeley. Kiosks positioned in the lobby and rotunda of the Ed Roberts Campus tell the story of how more than 100 people with disabilities occupied 50 UN Plaza in San Francisco for nearly a month in April 1977 to demand that a precursor to the ADA be signed. Supported by groups such as the Black Panthers, Delancey Street, Glide Memorial Church, and several well-known politicians, the protesters emerged victorious after a 26-day occupation. Visitors can learn about what it took to survive inside through photos, letters, and and by watching eleven video stories woven together from interviews that San Francisco State students from Journalism and History classes conducted with surviving participants of the occupation. Interactive features invite people to tell the world what makes them Patient No More.

The Disability Visibility Project interviewed Cathy Kudlick and Fran Osborne of the Longmore Institute on Disability, San Francisco State University about this exhibit.

 

Two posters, on the left is a poster that says, "Patient No More" and then smaller text describing the exhibit. On the right is a black and white photo of people crowded in front of a building with one sign that says: "Sign 504 now"

 

 

Are there any particular discoveries or findings that you are excited about? What are some things that people will be seeing and experiencing for the first time from this exhibit?

CJK: I’m especially excited about the oral history interviews with 504 participants, supporters, disability activists influenced by what happened back in 1977. SFSU students in Journalism and History classes conducted around 40 interviews, many of them with people who never had a chance to tell their stories before. These were great stories and the people were so honest and open and clearly what they did 37 years before still influences them today. It’s incredible.

FO: I echo Cathy’s enthusiasm for the interviews – they are fantastic – and we will include them on the project website too. Another favorite for me is a black and white film we found at the GLBT Historical Society called ‘Sign 504 Now’ which was made by Dan Smith. Though we have been trying to reach him for over a year, we finally made contact last week and are excited to find out more about how and why he made this unique film from inside the protest.

There’s been a lot of effort at making the Patient No More exhibit interactive and accessible—tell me about some of the unique features to this exhibit that other museums can learn from.

FO: I’m still grappling with access and it’s often like adding another dimension but I think that’s because museums and exhibitions have habitual approaches that are rarely shaken. Maybe access is like a muscle that has to be used to make it supple and fluid and integrated. The best way to learn about access is to do it. Theoretical exercises don’t work well because while access can be very simple and low-tech, it is very easy to get it wrong. There’s a phrase that designers use all the time which points to how every tiny element has to be considered and thought through. ‘The devil is in the detail’ is a phrase that reminds us all to make sure details have been discussed and considered. I’m excited by some of the access features as well as hoping that we’ve covered as many of our bases as we can. We have a large photographic element that provides a backdrop for one area of the space (not wanting to reveal too much). In order to provide an equivalent experience, the Longmore Institute has commissioned two poets to write a new work each that will capture the essence of the visual drama and power of this element. I think this poetry was Emily’s idea and what a great way of demonstrating a new conversation about access as well as providing a wonderful experience for all visitors. Again, I don’t want to give too much away but there are two main inter-actives that encourage visitors to express their views and make a personal connection to Section 504.

Tell me about some of the “must see” and “must experience” highlights from the exhibit that visitors should know about?

CJK: We have an interactive portion of the exhibit where people can tell what makes them “Patient No More.” There’s a real bullhorn that one of the professors in design, Silvan Linn, has rigged up so that the comments will be recorded, then approved for posting on line – we’re hoping people will get a sense of being an activist, part of something bigger that stretches back to 1977. For people who would rather communicate through writing, we’ll have a whiteboard and a marker – people’s notes will be photographed, uploaded, approved, then made available online. We experimented with the whiteboard part last July at the Disability Pride march and festival organized by the Silicon Valley Independent Living Center in 2014, and it attracted a lot of attention and actually got people talking with us and among ourselves.

FO: I think the whole thing is a ‘must see’ ‘must do’

What would you like visitors to come away with after learning about disability history from the Patient No More exhibit?

CJK: If we can get people with and without disabilities to understand that disability is a central part of US history for everyone, I will be a very happy camper. I’ll be even happier if this brings pride and curiosity that motivates people to converse and continue to fight prejudice and stigma against people with disabilities.

FO: Sometimes it’s the intangibles that stay. I like the idea of expanding everyone’s views and opinions, challenging their knowledge about the way things are and the way things have been in the past. We want everyone to experience the power of first-hand accounts of recent events, how important personal histories are, but also how they can differ and still be true. Perhaps visitors will come away with a new sense of how important it can be to preserve things that seem transient and ephemeral. Future generations may well be interested in that box of nostalgia, of treasured photos and leaflets, buttons and bus tickets, programs and video snippets.

What are the plans for the Patient No More exhibit after it opens at the Ed Roberts Campus on July 26, 2015?

FO: There is a traveling version of the exhibition, which will make its rounds of the Bay Area at the same time. It’s a ‘light’ version of the show with a single video presentation and less content, though geared to short visits. Each location will have a reception or related event and those details will be fleshed out nearer the time. I’ve included the schedule for its journey below. As for the main exhibit we hope that it has a life beyond its time at the ERC and there is always the 40th anniversary to think about in April 2017.

Mayor’s Office on Disability/City Hall: July 1st (11.30-1.30pm)

San Francisco State University: Monday Aug 21 – Thursday Sept 4 (reception August 21)

Cal State East Bay Hayward: Tuesday Sept 15 – Tuesday Oct 13

San Mateo County Office of Education: Thursday October 15 – Friday October 30

Silicon Valley Independent Living Center: Wednesday Nov 4 – Thursday Nov 12

Superfest: Contemporary Jewish Museum: Saturday November 14th

Notre Dame High School, San José  – Sunday November 15  – Sunday November 29

Marin County Office of Education: Tuesday December 1 – Tuesday December 15

What are some other major milestones/events in disability history that people should know more about but don’t?

CJK: There are many, but the history is still so new that people focus on a few key events mostly centered around the 1960s and 1970s. But the history goes back much further, and I think we miss a lot by assuming that a positive disability history started only in the US in the mid-twentieth century. I also think we need to learn much more about the ways that disability history intersects with poverty, public policy, race relations, and newer views of institutions as complex sites where people with disabilities came together. Again, this history is very new, so much more to discover. A good starting point is Kim Nielsen’s A Disability History of the United States which is relatively short and readable for a general audience; no one who reads it will think of US history the same way ever again. And of course there’s a whole bigger world out there where disability history from different times and places has much to teach us.

Is there anything else you’d like to say about the Patient No More exhibit or disability history in general?

CJK: Our cool title, for which I credit our assistant director Emily Beitiks. People should understand the double meaning: a) people with disabilities have fought to be understood as Americans living rich, diverse lives outside of medical contexts, not just as pathetic individuals passively waiting for a cure, and b) people with disabilities were sick and tired of waiting for the US government to sign a civil rights law that would make discrimination against them illegal. It was frustrating that an exhibit like this doesn’t have room to go into nuances for this, but hopefully some people will come to this on their own.

I also want to stress that while “Patient No More” was mostly the work of a tight-knit team of three (myself, Fran Osborne, and Emily Beitiks), it was a wonderful collaborative effort that brought together students and faculty from SF State as well as amazing members of the Bay Area’s many vibrant overlapping disability communities. One thing I will say: after working so hard on this exhibit, I’ll never attend another one without deep appreciation for all that goes into even (and maybe especially) the ones that seem simple yet leave you with something to think about.

FO: Ditto – we have started to list all the people who helped and contributed and it’s a very long list.


For more information on Patient No More, open July 26, 2015, Berkeley, CA:

https://sites7.sfsu.edu/longmoreinstitute/patient-no-more

Catherine J. Kudlick – Director

After more than two decades at the University of California at Davis, Catherine Kudlick was delighted to join San Francisco State as Professor of History in Fall 2012 to assume directorship of the Paul K. Longmore Institute on Disability.

Fran Osborne – Curator and Graphic Designer

Fran Osborne has a BA (Hons) in Typography & Graphic Communication from Reading University in England and an MA in Museum Studies from SF State University. She has a special interest in bi or multilingual interpretation in museums and other cultural facilities and has international experience in Arabic speaking countries. Based in California, she is currently volunteering at SFMoMA and SFOpera. Recently, she was the curator of DIS/PLAY: A Disability Take-Over Show By Artists With, and Without, an exhibit featured at SOMArts in San Francisco.

Q&A with Cathy Kudlick and Fran Osborne, Part One

For the first time, an exhibit on the landmark 504 sit in that took place in 1997, “Patient No More: People with Disabilities Securing Civil Rights,” in will be shown July 26-December 18, 2015 at the Ed Roberts Campus, above Ashby BART at 3075 Adeline in Berkeley. Kiosks positioned in the lobby and rotunda of the Ed Roberts Campus tell the story of how more than 100 people with disabilities occupied 50 UN Plaza in San Francisco for nearly a month in April 1977 to demand that a precursor to the ADA be signed. Supported by groups such as the Black Panthers, Delancey Street, Glide Memorial Church, and several well-known politicians, the protesters emerged victorious after a 26-day occupation. Visitors can learn about what it took to survive inside through photos, letters, and and by watching eleven video stories woven together from interviews that San Francisco State students from Journalism and History classes conducted with surviving participants of the occupation. Interactive features invite people to tell the world what makes them Patient No More.

The Disability Visibility Project interviewed Cathy Kudlick and Fran Osborne of the Longmore Institute on Disability, San Francisco State University about this exhibit.

Two posters, on the left is a poster that says, "Patient No More" and then smaller text describing the exhibit. On the right is a black and white photo of people crowded in front of a building with one sign that says: "Sign 504 now"

Where did the idea of the Patient No More come from? Why this subject and why now?

CJK: About ten years ago I attended an exhibit and event at the San Francisco Public Library sponsored by Community Works West where high school students interviewed aging Bay Area Civil Rights leaders. It was incredible because the kids were learning from the leaders by putting together a history exhibit – they did oral histories and mounted creative projects that reflected what they learned. The second these people started talking about their experiences, I began asking myself how I might do something similar about disability rights because I knew the Bay Area played a key role.

I’m a historian with a vision impairment. I’ve been working for about 20 years now to introduce disability history as a field of study. But I wanted desperately to get the fascinating Bay Area contributions to a broader disability rights struggle out to a bigger public, students, colleagues, the average person with and without disabilities on the streets. I know from all my work over the years how despite the fact that people think of History a passé, as an insult (“oh, she’s history!”), being aware that movements and identities have histories can be incredibly empowering – why do you think revolutions want to kill off the historians so they can start with a clean slate? Most people think of disability as a biological, physiological thing that happens to someone, something ahistorical, rather than an identity shaped by history, politics, economics, society, and culture.

FO: The Longmore Institute wanted to create a memorable exhibition to mark the 25th anniversary of the passing of the ADA, without being a snoozefest of dry policy and explanations of the law. They wanted a project that would be exciting and powerful for the local community, as well as being relevant for a much wider audience. Our initial discussions began to tease out the most compelling stories and content, and we discussed how we could also fulfill the Longmore’s mission to generate new conversations about disability. Fairly soon into the process it became clear that the Section 504 sit-in had more than we needed to produce an exciting and resonant exhibition. What’s more, the protest was carried out for the most part by young people and may therefore have greater resonance online. We knew we could partner with many experts in the local community, that we could interview some of the unsung heroes of this amazing event, and that we might be able to find some photographs and other memorabilia if we kept digging. Cathy and Emily were also committed to experimenting with modes of access and building this thinking into the heart of the project.

Do you feel that the 504 sit in has been adequately documented and recognized in terms of its significance in civil rights history?

CJK: Definitely not. I think that’s about to change with the upcoming anniversary of the ADA and when the 504 protests mark 40 years in 2017. Our exhibit will hopefully help with that, but I’m also thinking of university-trained historians finally waking up to this as an exciting, important moment in US social movement history. It’s been surprising how few historians of the 1960s and 1970s know about this story, even though it directly touches on things they know and care about. Their ignorance isn’t deliberate or conscious – it’s just that they haven’t had much information and haven’t known to even look for it. Once this story sinks into history courses at the graduate and undergraduate level, it will start to make its way into textbooks and teaching K-12. It might be a generation or so before most Americans have a chance to learn about it, but it will happen.

FO: Many people we’ve talked to are not aware of the Section 504 protest and we are excited to think of it becoming a part of the curriculum for students and for educating the wider disability community of the Bay Area who may have no knowledge of the civil rights work of many people with disabilities. Activism may not be as much a part of everyday life as it seems to have been in 1977 but I think people of all ages will be able to relate to the power of a movement centered on a single issue, whether they have a disability or not. I think much more could be done to explore the many stories of Section 504. Exhibitions can only provide a tiny taste of what is available to serious researchers and there is definitely scope for more people to work on the material we came across.

Many people, especially non-historians, do not understand all the work that goes into a history exhibit. Please tell me what is involved in preparing this exhibit by the Longmore Institute staff?

CJK: I’ll let Fran tackle the main story. But what struck me most as a history professor that it was so much about boiling a complex, nuanced story down to fewer and fewer words. We scholars are trained to do exactly the opposite from what is required to create text for an exhibit: we take something relatively small and pour our hearts into writing about every detail. We expand, elaborate, highlight contradictions and confusions. For an exhibit the idea is to boil things down to their most raw essence without completely loosing the spirit and complexity of what we’re talking about. Writing this text is the hardest writing I’ve ever done. When you read the text, you might think: what’s the big deal? How hard is it to come up with 25 words about something? Trust me: it’s nearly impossible! I’m hoping that this skill will help my scholarly writing by making me aware of exactly what needs to be said and why.

FO: We begin with lots of questions. We try to gain an overview of the range of people who can provide first-hand testimony, as well as an idea of the ‘stuff’ we have access to. Usually there are many conflicting narratives and that is great for an exhibition because it demonstrates how varied truth can be. People with direct connections are very important for providing the kind of stories and information that hasn’t made it into the official record. Visitors also expect to find authentic original material to focus their attention on while they take everything in. The term ‘stuff’ is a useful catch all term for describing what the material content of the exhibition will be. Is there a collection of original memorabilia that we know is relevant? If so, whose is it and would they be willing to lend it to the exhibit? Are there photographs, or films, newspaper reports or audio recordings? Have they been seen before? What do the major collecting institutions have? What design and conservation limitations do we have? Is any of the material fragile? Where do we start and of course, how much money do we have? Often, exhibitions involve a good deal of detective work to uncover the most relevant or important objects and material and at the same time, the team will be asking many, many questions about the intellectual and factual content. What do the existing sources say and why do they contradict each other? What are the major themes and how should we present this information? What do we want to leave people with? What interactive elements are appropriate and how will they reinforce the content?

Once the range of material and ideas are clear and assembled, the difficult process of designing, writing and implementing the exhibition begins. After developing the overall ‘concept’ each element is fleshed out and any further research is done. Due diligence in making sure that everything is accurate (and has a reliable source) is crucial in maintaining the public trust with what is presented. More questions ensue: who are those people in that photograph? Is that the best one we have of that story? Where was it taken? What should the credit be? Do we have copyright clearance and are their high-res digital files? As you can imagine, when there are many moving parts, this process can take a long time and as the design and content progresses, things have to be culled and taken out until what remains has earned its place. Every time one element is changed it has a knock-on effect on everything else. Once the main elements are in place, the team continues to refine and finalize the text and all visual, film and audio material and consult with advisors and focus groups to test things out. More revisions are done. Slowly the exhibition gets clearer and clearer. We were lucky to have a relatively long time frame to create the exhibition and it allowed for plenty of conversation and debate that can be quite challenging if time is limited but ultimately creates a better result for the public.

The process involves juggling many things at the same time and is a bit like slowly building a jigsaw puzzle. While some parts are very clear, others are still missing or elusive, and everyone has their own approach. Some people begin with the corners and edges, while others just dive in. The whole team is working together so that the final puzzle will appear in all its glory.

What are some of the challenges you faced in curating, planning and designing this exhibit?

CJK: There were a ton of moving pieces, conceptually and literally. We wanted to honor the participants and the legacy. But we didn’t want it to be a white-washed feel good story because there were tensions and omissions. It was a racially-diverse movement but the leadership was almost exclusively white women in wheelchairs. How could we honor the amazing thing they made happen (in no small part by building bridges to local communities of color such as the Black Panther Party) while honoring the feelings of some participants of color that their story hasn’t really been part of the 504 and disability rights stories? And how to acknowledge the divides among various impairment groups without erasing the awesome collaboration, connections, and esprit de corps that brought everyone together and created a more-or-less unified disability rights movement that helped bring about the ADA?

Another challenging piece was our decision early on to build in multiple forms of access at every stage.

FO: This really is the most complex exhibition project I’ve ever known and Patient No More has required a different level of attention for all kinds of reasons. We have been re-visiting an event that had its own mythology and which was clearly a life-changing event for many people who went on to be activists and campaigners. How would we honor those experiences and involve new audiences? We have been consulting with the local disability community, asking for feedback and prototyping as much as is practical with our resources and capacity, as well as consulting with museum experts far and wide. Although our budget is fixed, the scope of the project is ambitious and meant also generating our own content through the 40 video interviews, which was quite a project in itself. Cathy mentions above the issues we encountered in working on the deeper aspects of the protest and they continue to come up in discussions. Other challenges were practical and frustrating. Initially we couldn’t find some of the people we knew we wanted to interview. We’d hear reports of them but then the trail would go cold. We would persist but it was not easy. Sometimes phone numbers might be wrong or the person may have left the area. Sometimes people were willing to meet but didn’t want to be interviewed on camera. We were also told that journalist Evan White who had covered the protest for Channel 7 might have passed away. We suspected he was still around and eventually located him and interviewed him at the ERC but we collectively worried a great deal about getting as representative range of people as possible, especially those who had never had their opportunity to tell their story. The Longmore team did a great job of coordinating all the interviews but then of course, the raw footage of the interviews has to be transcribed and after a clear plan, has to be edited into short meaningful films, with captions and then … audio description … which means there must be delicate editing of timing. Every element had to be thought of in access terms. When there is text, we have to consider the vocabulary and reading level. When there are images, we have to consider how a blind visitor or visitor with a vision impairment will have an equivalent experience? One of the greatest challenges for the designers is that the ERC has several entrances and exits and a linear journey around the exhibition would not work. In addition, the structures have to be capable of being moved out of the space for ERC events. The designers faced considerable challenges in creating structures that would fit through doorways on the basement level of the ERC, would still fulfill ADA requirements, have power for video monitors showing interviews, and incorporate Braille as part of the design. Space was always an issue as you may imagine. I’m hesitant to say more but I hope we’ve conveyed just how complex this exhibition is.

How did you engage with the disability community in terms of outreach and participation in the Patient No More?

CJK: We’ve had many formal and informal conversations throughout the process. We’ve solicited feedback on all of the text and oral history interviews. We invited people from the community to attend access “charettes” (feedback sessions) about the interactive elements. Our design team camped out at the Ed Roberts Campus for a day and approached people to ask them to interact with everything from text size to buttons on the tv screen.

FO: We learned so much from these early meetings and testing sessions and continue to consult and incorporate feedback from the community. We tested our interactive concepts at the Disability Pride march and festival organized by the Silicon Valley Independent Living Center in 2014. We had a great time telling people about the exhibit and asking them to test out our interactive ideas. People learn so much more when they can engage in a personal and direct way. Road-testing always makes a big difference. I wish we had the resources and time to do more.

Early on we also wanted to develop close working relationships with those who were there, and contacted as many people as we could who had been in the protest. Even now, new people are coming forward to tell us of their involvement, or relay their memories of the protest. Everyone had a lead for someone else or a newspaper clipping or a story that we had never heard before. Ken Stein has a great series of recordings and pointed us to other collections in the Bancroft and as time went on we discovered other protesters who had treasures they were willing to lend. HolLynn D’Lil had a huge archive of photographs she had taken in the San Francisco protest and from the group visit to Washington. She also had her own archive of notebooks and copies of letters and flyers and press releases that gave us a huge boost in understanding the protest directly from original material. The more people we talked to the better our sense of the protest became and the more engaged we hope the community is. As Cathy says, we had design charrettes early on and have continued to consult with individuals and interested groups. Cathy and Emily really are experts in access and their contribution is huge. As a sighted person it is very easy for me to forget how biased museum exhibitions are in favor of the visual. We had to be mindful that not every person with a visual impairment may read Braille or have the funds for a smart phone. Most recently we have been working with the access team at the Lighthouse For The Blind in SF who are providing Braille for the exhibit. Often issues and problems get solved in these small group meetings in ways that are so satisfying. We may still make mistakes but we are doing everything we can to incorporate access in a dynamic and inclusive way. I’ve also become quite aware of the need to expand the understanding of 504 and how it protects peoples’ rights. It’s almost as if a new round of 504 and ADA trainings are needed to inform the younger generations of people with disabilities.


 

For more information on Patient No More, open July 26, 2015, Berkeley, CA:

https://sites7.sfsu.edu/longmoreinstitute/patient-no-more

Catherine J. Kudlick – Director

After more than two decades at the University of California at Davis, Catherine Kudlick was delighted to join San Francisco State as Professor of History in Fall 2012 to assume directorship of the Paul K. Longmore Institute on Disability.

Fran Osborne – Curator and Graphic Designer

Fran Osborne has a BA (Hons) in Typography & Graphic Communication from Reading University in England and an MA in Museum Studies from SF State University. She has a special interest in bi or multilingual interpretation in museums and other cultural facilities and has international experience in Arabic speaking countries. Based in California, she is currently volunteering at SFMoMA and SFOpera. Recently, she was the curator of DIS/PLAY: A Disability Take-Over Show By Artists With, and Without, an exhibit featured at SOMArts in San Francisco.

Alice Wong: Angry ADA Minute 7/15/15

Alice Wong, Founder and Project Coordinator of the Disability Visibility Project recorded her ‘Angry ADA Minute’ for the Disability Minute Series for public radio station KUAF for broadcast on July 15, 2015

 

Check out the other Disability Minute audio clips by people with disabilities: http://kuaf.com/programs/disability-minute-kuaf

Text transcript of Alice’s Angry ADA Minute:

Hi, my name is Alice Wong and this is my ADA minute, or rather, my Angry ADA minute. While it’s wonderful to celebrate this huge anniversary and look back with nostalgia, I resist the sense that the ADA or other similar laws are the pinnacles of disability rights. There is so much more that needs to be done. Culture change is slow and difficult, especially when it comes to dismantling institutions, policies and structures that continue to marginalize and hurt people with disabilities. For example, here are a few things that burn my biscuits:

1: The continued institutional bias in Medicaid personal care services with years-long waiting list for community-based services

2: The school-to-prison-pipeline that disproportionately impacts students with disabilities

3: Violence toward people with disabilities in their interactions with law enforcement and access barriers in prison and the justice system.

This is Alice Wong and thanks for listening.