Image of two people facing each other in a recording booth with microphones in front of them. On the left is a middle-aged white woman with short red hair. She is wearing red-print shirt and blue jeans. On the right is an older white man with short brown hair. He is wearing a dark shirt with suspenders.

DVP Interview: Shannon Des Roches Rosa and Steve Silberman

Shannon Des Roches Rosa interviewed Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, on June 20, 2015 for the Disability Visibility Project at the San Francisco Public Library. Below are condensed excerpts from their conversation.

On the predominant narrative about autism

Steve: I started to develop the idea that there was a terrible problem in society, which was that the rise in diagnoses of autism in recent years — which was undeniable and striking — had never been adequately explained to parents in a way they could understand.

Clinicians would say things like,”Well, it’s broadened diagnostic criteria and better case finding.” But what does that kind of language mean to a young mother who is searching her two year old’s face for signs of eye contact?

Shannon: Yeah.

Steve: And I thought, this is a storytelling problem. The problem is that there’s one story that long time clinicians and researchers in the field understand, and there’s another story that parents understand, and the parents’ story is very compelling — the notion that pharmaceutical companies are poisoning a generation of children and covering it up and convincing journalists to assist in this massive global conspiracy. Is that a plausible story? Yes. Has it happened in the past? Yes. Have pharmaceutical companies covered up even massive fatalities caused by drugs that should of been taken off the market. Yes, yes, yes. It’s completely believable, but in this case, it’s wrong.

Shannon: Yeah.

Steve: And so I thought, somebody who can tell stories has got to go in there and try to make a big effort to tell a story that’s true and emotionally powerful, but it’s not this vaccine story.

On writing the book, Neurotribes: The Legacy of Autism and the Future of Neurodiversity

Shannon: So in the course of the five years of researching your book, what are some of the more unexpected and surprising things that you’ve uncovered?

Steve: When I was writing The Geek Syndrome, I stumbled across what is now called the neurodiversity movement, which was launched by autistic people who were tired of being described as puzzles and medical mysteries, and instead wanted to experience their lives as worthwhile, and beautiful, and valuable.

Shannon: And tell their own stories.

Steve: And tell their own story. Exactly. And so I thought that was very interesting. There were people who didn’t want to be described just by the deficits, the alleged deficits they have. So I knew, I just had this intuitive feeling that there was some kind of really interesting story there, even if I thought I couldn’t solve the mystery of why the number of diagnoses were going up. What I found, much to my surprise, was that the basic timeline of autism’s discovery — which is reiterated in thousands of textbooks and books and Wikipedia — was incorrect.

Shannon: Oh.

Steve: And that if you understood the basic timeline of autism’s discovery you would completely understand why the numbers have been going up so strikingly in recent decades.

Shannon: That’s important.

Steve: It wasn’t even hard to understand. Basically, no one had done the work of excavation required to understand the true story of autism’s discovery, and in order to do it, I had to do stuff like have documents translated from the German, and I looked in libraries all over the world for obscure papers, some of which were never even published, drafts of papers and stuff.

Shannon: Wow.

Steve: And once I started putting things together, I discovered the following, which was completely revolutionary. The story of autism’s discovery — as it is usually told — is that a child psychologist at Johns Hopkins hospital named Leo Kanner in 1943 wrote a paper about autism describing 11 of the young patients in his clinic.

And that is presented as the landmark discovery of autism. And a year later, this other guy in Vienna named Hans Asperger wrote this paper that’s considered merely a footnote to Kanner’s amazing discovery. And what everyone says is that: A, they were two completely independent discoveries, they were not aware of each other’s work. And B: that Kanner somehow never read Asperger’s paper. Like through the course of his whole career, he never read it. As I kept on with the research, that seemed really implausible. Why? Because people usually say, oh Kanner never read it because it was published in German. Well, German was Kanner’s native language.

Shannon: [LAUGH]

Steve: …Asperger’s article was published in this obscure German language neurological journal. Well actually Kanner references that journal like dozens of times in his other papers. So it was clear that Kanner certainly would have read it probably almost immediately when it was published in its original language.

Shannon: Got it.

Steve: Why did he not mention it? The biggest historical discovery in my book was that the man who worked in Asperger’s clinic, and helped Asperger develop his conception of autism, and was Asperger’s chief diagnostician — a man named Georg Frankl — had to flee Austria in the late 1930’s because that’s when the Nazis took over. He was able to flee Austria with the help of a psychiatrist in Baltimore named Leo Kanner, who brought him to John Hopkins, to run this children’s clinic.

Georg Frankl turns out to be the guy who diagnosed Kanner’s first three autistic patients. So Kanner was certainly aware of Asperger’s work through Frankl’s expertise in autism. He was depending on it. He sent his first three autistic patients — which he obviously did not know what to do with — to Frankl and this other person, Anni Weiss, who was another of Asperger’s core team in Vienna, was also in Baltimore at the same time because she had come to America and married Frankl.

And so Kanner literally had the best expertise from Asperger’s clinic in Johns Hopkins when he quote unquote, “discovered” autism. But the problem was that Kanner’s interpretation of autism was profoundly different from Asperger’s. Asperger and Frankl’s conception of autism was what we now call a spectrum — a very broad range of presentations, diverse manifestations, and colorful eccentricities.

Asperger conceived of autism as very common. He said that once you knew what to look for, you saw it everywhere. He also said that autistic people were already familiar to most people in world literature, in the pop culture archetypes of the absent minded professor and the socially awkward scientist.

He also knew that autism was a lifelong condition, because he followed some of his patients for ten years. He had seen more than 200 autistic kids in his practice over the course of a decade — which somehow everyone seems to overlook in his paper. Everyone ignores that. He only describes four kids in his 1944 paper but those kids were, I believe, composite portraits. He was just trying to create four perfect archetypes so that his fellow clinicians could recognize them when they walked in the clinic.

Future thinking about autism and disability

Shannon: So what kinds of changes in public understanding have you seen in the course of your time spent writing on this topic and along the same lines, what is your biggest hope for your book in terms of how it will influence public thinking and conversations about autism and disability?

Steve: Well, the one thing that has changed is that five years ago, when I started writing the book, I was really worried because the vaccine theory of autism causation was still very popular and I thought people would just think I was insane writing this book. But the anti-vaccine movement has really lost a lot of credibility in recent years because there have been so many outbreaks of communicable diseases that were practically eradicated in the late 20th century because of vaccines.

Earlier this year, there was the so-called Disneyland measles outbreak, and there have also been mumps outbreaks recently. And so people are noticing, wow, okay, people actually still get the measles and kids with impaired immune systems can die of the measles. So there’s this theory that vaccines cause autism which, by the way, has been disproven, debunked, discredited in many, many studies and meta-analyses.

It used to be that people like Jenny McCarthy were considered the voice of autism parenting: “Mommy Warriors.” But now, it’s actually people like you who I think are the real voice of autism parenting. And it turns out that parents like you have always been the compassionate, true voice of autism parenting, like the parents who started the National Society for Autistic Children. They had a very compassionate and positive attitude. What they were working for was changes in laws so that their kids could get an education, and those laws passed and generations of kids benefitted. And that whole tradition of demanding accommodations and changes to laws had been forgotten behind all the noise of the anti-vaccine movement.

What I hope is that people read my book and can come to an understanding of why the number of diagnoses has gone up so much in recent years. I want people to understand that autistic people have always been here and have been quietly making contributions to society that have made society better.


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

Steve Silberman has covered science and cultural affairs for WIRED and other national magazines for more than twenty years. His writing has appeared in The New YorkerTIME, Nature, and Salon. He lives in San Francisco. His new book is called Neurotribes: The Legacy of Autism and the Future of Neurodiversity. Twitter: @stevesilberman

 

 

Image of a group of people sitting in a conference room having a conversation on assistive technology

Integrating the disability perspective: assistive technology, design, hackathons & makeathons

On July 21, 2015 the Independent Living Resource Center of San Francisco (ILRCSF) and the Disability Visibility Project organized a Community Dialogue on Assistive Technology Needs of People with Disabilities.

We were delighted by the presence of people with disabilities who use assistive technology (AT), people with disabilities who use AT, are in the tech industry and/or have experiences with hackathons and makeathons, and people from various organizations and companies that work on assistive technology.

Image of Itai Dagan of Tikkun Olam Makers and Erin Lauridsen, Assistive Technology Educator, ILRCSF at a table during the meeting.

Image of Itai Dagan of Tikkun Olam Makers and Erin Lauridsen, Assistive Technology Educator, ILRCSF at a table during the meeting.

There was a high level of engagement and participation by everyone in the room and via Google hangout. Here are a few ideas and issues shared during the meeting. Big thanks to Liz Henry for transcribing the notes and Erin Lauridsen, Assistive Technology Educator at ILRCSF, for facilitating the meeting!

[Please note these are condensed summaries and not exact quotes]

Skills and expertise of people with disabilities

  • “We might have a disability and a need, and skill at tinkering, but no formal background, but because of that we have brilliant, thinking outside of the box, solutions.”

Input from people with disabilities at hackathons: at the outset, not at the last minute

  • One person tells story of a horrible experience at a hackathon where people were very excited to make a bluetooth device to open all the automatic doors in the world. However, no automatic doors use bluetooth. LOL. Great idea, open the door, but make sure first that you know the technology that’s currently used. At this particular hackathon, people also asked for her input with 3 hours left in the competition.
Image of a group of individuals at a large conference room having a discussion on assistive technology.

Image of a group of individuals at a large conference room having a discussion on assistive technology.

Process of developing and making new AT

  • Don’t underestimate the usefulness of things breaking. There’s value in things both breaking and failing. Fail fast, that’s good. In hardware hacking, break fast. When things break we learn where they’re weak. We learn where we need to make them stronger.

Ownership and knowledge production

  • Some participants voiced concerns that they will participate, give ideas, and then have to pay for the resulting products.
  • When we contribute to things that become proprietary and then those ideas go into a black hole, out of reach of users with disabilities.
  • Arie Meir from Google.org said everything in the makeathon itself is open source and goes online. Participants in the Google.org makeathon have to sign a document saying they can’t be the proprietor of a patent of something that happens during the makeathon.
  • Itai Dagan from Tikkun Olam Makers said they want to use funding to make a treasury online of designs and information so it becomes easily available to others.
Arie Meir of Google.org talking about the Google Impact Challenge and the importance of participation and consultation by people w/ disabilities at ILRCSF

Arie Meir of Google.org talking about the Google Impact Challenge and the importance of participation and consultation by people w/ disabilities at ILRCSF

On organizing successful events

For hackathons and makeathons that are 72 hours and 24/7…

  • Events need to be clear about accessibility so that the event will be successful and could work for people who are marginalized.
  • What will self care look like?
  • People with access needs may need help or maybe toughing it out is wrong idea
  • How do we participate without brutalizing our bodies for a ‘competition’?
  • Events might be free, but there are incidental costs like transportation, food.
  • How do you post information on sliding scale, dietary restrictions, accommodatons or financial help without stigmatiizing people?

For more information about the upcoming Bay Area Makeathon for Assistive Technology (September 11-13, 2015): http://www.tomglobal.org/bay-area-makeathon

Feel free to participate in survey on the assistive technology needs by the ILRCSF (Google doc): https://docs.google.com/forms/d/1sP85aB7RDnhXYFn3m8w5zxNdK5BJNM2krD5-0OZzDyo/viewform?c=0&w=1&fbzx=2952773239276616563 

Logo of the Lighthouse featuring a white background with a black circle, a white square is in the foreground of the black circle with braille lettering and a graphic of a lighthouse

Media Partner #88: Lighthouse for the Blind and Visually Impaired, San Francisco

Thank you to the Lighthouse for the Blind and Visually Impaired of San Francisco for supporting the Disability Visibility Project since last year!

From their About page:

LightHouse for the Blind’s mission is to promote the equality and self-reliance of people who are blind or visually impaired through rehabilitation training, employment placement, Enchanted Hills Camp and other relevant services.

If you are in Northern California and have questions related to blindness or vision loss, you can reach us at: 1-415-694-7322, or info@lighthouse-sf.org, or visit us at 214 Van Ness Avenue, San Francisco. If we can’t answer your question, we will research until we find the information you need.

Facebook: https://www.facebook.com/lighthousesf?fref=ts

Twitter: @lighthouse_sf

Guest blog post: The Little Girl Who Wanted to be Ansel Adams

Guest blog post: The Little Girl Who Wanted to be Ansel Adams

By Tammy Ruggles

I had a secret dream that I barely acknowledged to myself, let alone tell the world: I wanted to be a fine art photographer.

Not such a far-fetched dream for someone who loved the arts, and especially the striking black and white landscapes of my photography hero, Ansel Adams. Growing up in rural Kentucky, I was surrounded by beautiful landscapes.

But it was far-fetched because I was born with RP, or Retinitis Pigmentosa, a blinding disease that steals your vision over time by destroying the retinas. My first pair of glasses came at the age of 2, I had night blindness, which is associated with RP, and it was impossible to read settings on a camera to shoot manually, so traditional photography and photography courses were out, accepting the fact that I would have to be happy with taking family snapshots with a disposable camera, and I was.

Instead, my artistic pursuits turned to sketching, writing, and studying the arts. I took four years of high school art, and then almost three more in college. Almost every elective was arts-related.

I had another dream too. Social work. And I earned two degrees in order to enter that profession.

At age 40, however, I was declared legally blind, and had to retire from my position. I was no longer legal to drive.

In a tailspin, I wasn’t sure what to do except take a chance on my art-related hobby, writing. Fortunately it turned into a second career.

I couldn’t let my visual impairment get the best of me. I couldn’t. I had a son to raise by myself, and a precious life to live. My positive nature told me I just needed to figure out a new way to do that.

I always believed firmly that if you are given a gift, you should use it to the best of your ability. This is why the arts came easy for me. I was born with the desire to create, and becoming a writer felt as natural as becoming a social worker.

I’ve said it before, and I have to repeat it here. People are lucky to have one dream come true in a lifetime. I’ve had more than one.

As the years passed, my writing career flourished while my vision declined. The time came when I could no longer sketch with a charcoal pencil or a Sharpie, and I was ready to give art up for good when a Facebook friend suggested I try finger painting instead.

This opened a door I never knew existed, and I created several hundred finger paintings in less than a year.

When I was satisfied with the number I’d finished, it was late 2013, and as I was browsing videos on the internet, I happened on an Ansel Adams biography. This, along with information about the ease of point-and-shoot cameras, rekindled my strong desire for photography.

I was a fool to try. I was legally blind. How in the world could I do this? WHY did I want to do this?

"Grazing": vertical picture of one black and white horse eats grass in a field.

Photography by Tammy Ruggles. “Grazing”: vertical picture of one black and white horse eats grass in a field.

The idea wouldn’t let go of me. I was at once excited and terrified by the idea.

"By the Lake." Black and white image: a vertical picture of lake water in the mid-ground, with reed-like stalks standing dominant in the foreground, and a horizon line in the background.

Photography by Tammy Ruggles. “By the Lake.” Black and white image: a vertical picture of lake water in the mid-ground, with reed-like stalks standing dominant in the foreground, and a horizon line in the background.

A legally blind photographer? Was it possible? What would people say? What if my pictures were terrible? What if they were pretty?

"As a Cloud." Black and white image: one big round puffy cloud in the sky with smaller ones drifting upward from it in a diagonal direction toward the upper left corner of the picture.

Photography by Tammy Ruggles. “As a Cloud.” Black and white image: one big round puffy cloud in the sky with smaller ones drifting upward from it in a diagonal direction toward the upper left corner of the picture.

With more fear than hope, I ordered a point-and-shoot camera. One that would be set on auto, that could do the work for me.

No darkroom required. No reading the settings, or turning lenses. Just point and shoot.

I certainly didn’t feel like Ansel Adams with my camera still sitting in its box on my kitchen counter.

It took a slight nudge from my son to click the shutter for the first time, and view the captures on my 47-inch computer monitor, but once I did, the floodgates were open, just as they’d been opened with finger painting.

I was an artist losing vision. I didn’t know how long my vision would hold out at this level, and I was going to enjoy every second of every snap I took.

"Side of the Mountain."  Black and white image: a landscape of a mountain on the right side of the image with 3 ridges jutting out into the air in a stair-step formation. The left side of the image is dark sky.

Photography by Tammy Ruggles. “Side of the Mountain.”
Black and white image: a landscape of a mountain on the right side of the image with 3 ridges jutting out into the air in a stair-step formation. The left side of the image is dark sky.

The first pictures were practice, I know. I don’t know a beginning photographer yet who hasn’t shot the heck out of rocks and wood. But the more I photographed, the more I realized that I could do more than just be like the photographer Ansel Adams. I could take all that I knew and loved about art, and let the artist in me come forth as the photographer Tammy Ruggles.

In the last two years, I’ve been privileged to have had my photography featured in literary journals, art magazines, and photography publications around the world.

Repeating earlier what I said, I don’t know how long my vision will hold out at this level, but I’ve enjoyed every second of every photo I’ve snapped. If this isn’t a dream come true, I don’t know what is.

"Sunset." Black and white image: a landscape image of the sun setting behind a hill, with a scattering of clouds overhead.

Photography by Tammy Ruggles. “Sunset.” Black and white image: a landscape image of the sun setting behind a hill, with a scattering of clouds overhead.

On a side note, last winter I had a dream that a living Ansel Adams came to my house and said, “Come on. We’re going to take some pictures”. We climbed a few hills together and took some photos. Not in Nevada, but here in Kentucky.

My artist statement goes something like this:

I want people to see the fine art photographer that was born in 2013, with the help of a point-and-shoot digital camera, 47-inch computer monitor, and remaining vision.

I also want others to see what is possible for the disabled with the right tools and the right outlook.

For more on Tammy Ruggles including her photography portfolio:

http://tammyruggles.deviantart.com/gallery/46117265/Photography-Black-and-White

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.