Asian woman sitting on the left-hand side wearing glasses and a green jacket. Next to her is an older white man with curly hair and glasses. He is wearing a blue shirt

Disability Visibility Project: Eric Koenig, Part 1

Alice Wong, Project Coordinator of the Disability Visibility Project, interviewed Eric Koenig, former Director of the Office of Student Life at the University of California, San Francisco, on October 25, 2014 at StoryCorps San Francisco.

In 1987 there were two students with disabilities at University of California, San Francisco. By 2013, there were over 150 students with disabilities. As a new student to UCSF in the late 1990s, Eric was one of the first people from the school that Alice met.

This is the first of two blog posts. Below are approximate excerpts from their conversation.

How Alice first met Eric as a prospective grad student in 1996

Alice: I was a prospective student thinking about going to UCSF and I recall distinctly being very apprehensive, especially being from the Midwest and contemplating a move and the idea of going to graduate school plus having a visible disability, worrying about housing, you know, just basic how to live questions.

And I made a cold call through the directory, found your name, and you called me back. And I remember it was like, in the evening in Indiana, and you were just, so open and willing to talk about you know, the challenges and what UCSF could realistically offer me and I think, to me, that was just a revelation because it was…such a generous and wonderful gesture to have this conversation and it really gave me some sense that there was a possibility that I should pursue this. So that led to a trip out to UCSF where I met with you and I think we talked a lot about what if, what kind of plans would need to be made if I was accepted. So you know, we’re not assuming I was accepted, but if I was, what were the plans in place that we would have to make?

Eric: I remember we had a number of conversations and I guess I had been waiting to meet you before you contacted me and I didn’t know who, who would actually call, and you were the caller that I was expecting for a few years previous to your call. In some ways our timing was very good, because there were accessibility issues at the university and you were asking about some very specific issues that needed to be resolved… housing in particular and I think we both quickly understood one another that there was a very collaborative style to begin with in our conversation and, as you articulated some of your concerns, I was able to articulate either how we could accommodate you, or at least an attitude and a willingness to accommodate

Alice: Mm-hm.

Eric: And so I think you know, our largely, our main issue was really about how accessible housing, of which there really wasn’t any appropriate, accessible housing.

Alice: …as I recall it was right around that time the Aldea San Miguel student housing was still being built and I think that would have been the accessible housing, but it was not available yet. So I think you know, the main message that you communicated to me was that UCSF is somewhat small and unique [and] the sense that you know, we can definitely figure things out together.

Eric: Right.

Alice: And I feel like UCSF, at that time when I applied, was at a really interesting moment where I was able to get really customized, individualized assistance and that’s really unique. I know that, you know, once I was accepted, things were put into motion. You connected me with the Director of Housing and they…did some renovations to faculty housing on Fifth Avenue which is only a block away from the main campus…within several months, I believe, the Housing Department was able to retrofit a bathroom and that apartment was already was on a garage ground floor, but it was really, getting an accessible bathroom….that was a major thing to do, because that takes a long time to institute any sort of change or renovation and the fact that UCSF was committed to having this done before I arrived really meant a lot to me as a student because, you know, I already felt so, [LAUGH] you know, really like, singular in a lot of ways.

I did realize that I was not the first student with a physical disability at UCSF, but I feel like [one of the few]. There have been others, right, to your knowledge?

Eric: Yeah…the campus was an interesting mix of being kind of, behind the curve in terms of being accessible, but also, we did really well in responding when students were coming with you know, whatever needs that they may have that we were not equipped to deal with. And so I think what I was trying to communicate to you in our phone calls was, if you’re willing to be a pioneer and be the first one and understand that change will need to occur, I believed that the change would occur. And so we weren’t accessible, or we weren’t properly accessible [LAUGH] I should say, but by being present and by being willing to accept some temporary accommodations that you and your family were very gracious about, you understood that by…coming to campus, that the campus would then make the changes that, that were you know, appropriate and accessible.

On partnerships between students and staff

Eric: I just wanna comment on…your ability to connect with people and to educate and advocate and to assess an institutional environment and to your instincts around how to prompt change are just superb. And you’re also extremely adaptive figuring out, you know, who the allies are, and how to, you know, how to connect with steering committees, advisory groups and so those are really important attributes. And it’s not always easy for people with disabilities who are in environments [that are] not as accommodating as they would like it to be. It really represented a really positive model of change…how to connect with the members of the community and to help them understand some of the challenges and really affect change that improve the environment for everyone, not just people with disabilities.

Alice: Well, I really do feel like we were equal partners in this. And that’s what most people wouldn’t imagine [between] a student and an administrator, you know, having this kind of power relationship, but I really feel like we both worked so well together at these broader aims. And you know, maybe part of is there was this opening, but I think part of it too is the institutional culture at UCSF. When I arrived in ‘97, there were still a lot of issues and, you know, that was all laid out clearly for me and I accepted it and I thought, “I think I can work with the people on campus to make it a better place.”

Eric: The style and attitude with which I used to approach my job, or at least, my area of services for students with disabilities, was really that the students were the experts and I needed to know from each student what their needs were…especially in cases when, you know, we hadn’t served a student with a particular disability or requiring a certain kind of accommodation or facing a certain set of challenges…I was always interested in knowing what the student was interested in what’s worked before. I got a lot of guidance from students and I got a lot from you.

Looking back at over 25 years of providing services for students with disabilities

Alice: …thinking back over your career, what are some highlights of things you are most proud of in terms of providing services for students with disabilities?

Eric: … there’s a lot of things that I’m proud of…some things that stand out is that we provided educational support services for a number of Deaf students in pharmacy and dentistry and that’s a particularly difficult area to provide accommodations…the level of service that we are able to provide was what was needed for a Deaf student to be successful and it was a much higher and more focused and labor-intensive level of service than, the University, I think, was obligated to provide.

…over time we developed a very, very sophisticated program for students with learning disabilities and there’s probably 100 students there now.

Alice: That’s awesome.

Eric: And many students who are enrolled who have learning disabilities…they’re so bright and so capable and used compensatory strategies before they came to UCSF that they didn’t encounter the problems until they encountered such a rigorous curriculum. And so I think in years past, a lot of students would ultimately not do well and go away and we developed very proactive outreach mechanisms…we created a very, very healthy environment, a very proactive environment and hired exceptional learning specialists, and I think we wound up saving a lot of careers and [in the end helped] a lot of students with learning disabilities graduate and go on to become outstanding providers.


Eric Koenig had a 35-year career in student services on three University of California campuses. He served as the Director of the Office of Student Life at the University of California, San Francisco for 25 years where he was responsible for a group of diverse student services including Student Disability Services. Eric retired from UCSF in 2013. He is a lover of all things Larry David and Curb Your Enthusiasm.


Alice Wong is a Staff Research Associate, Department of Social and Behavioral Sciences, UCSF. Alice works on various research projects for the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability and Rehabilitation Research and the Administration for Community Living. She is an author of online curricula for home care providers and caregivers for Elsevier’s College of Personal Assistance and Caregiving. Currently, she is the Project Coordinator for the Disability Visibility Project: A Community Partnership with StoryCorps.

Twitter: @SFdirewolf

LinkedIn: http://www.linkedin.com/pub/alice-wong/65/7b4/441

View looking down from a second floor of girls with disabilities, including some in wheelchairs gathered together forming the shape of the symbol for women

Letters to Thrive: Letters by Women with Disabilities to their Younger Selves

There are SO many great tumblrs out there by people with disabilities. Letters to Thrive was created by Sandy Ho and this is one you should definitely explore.

From their About page:

“Letters to Thrive” originated from a small mentoring program that serves young women with disabilities. The program, Thrive Mentoring, is an Easter Seals Massachusetts based mentoring program that pairs each of its disabled young women mentees with older women with disabilities as her mentor. The goals of the mentoring program include empowering young women to be proud members of this larger network of women with disabilities.

“Letters to Thrive” is a welcoming and safe place where women with disabilities, young and old, have the opportunity to speak and read the words from one another. Our strength comes from our numbers, our power comes from our shared bonds, and our impact comes from this community we claim.

Be sure to read these great letters. Here is one posted on November 11, 2013, “Dear 14 year-old Isabella”:

You’re going through a hard, traumatic time right now.  To be honest, one of the hardest years of your life. The doctors have just inserted a scar on your back. Your new scar, which you hate from the bottom of your heart, runs from the bottom of your neck to the beginning of your behind. You HATE every inch of that scar. To be honest, you can’t even wear clothes that expose your scars because you HATE them so much. You will grow out of it, I promise.

Recovery is one of the hardest things to go through. It will suck a lot, but think of the other way your life could’ve turned out. You would have died. I know it’s hard to think about. You are a miracle, and I know you are. You have to prove it to yourself. You have all the time in the world to prove it to yourself.

You know, deep down in your heart, that there is hope. You just need to find it. I’m glad to say that you found it, and it’ll all be okay in the end. Believe in yourself and you’ll be okay.

With Love, 
Your 16-year-old Self


 

Letters to Thrive: http://letterstothrive.tumblr.com

Submit Your Own Letter: http://letterstothrive.tumblr.com/submission

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

Sandy Ho on Twitter: @PerImperfecta

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

Disability History: Elmer Bartels and Fred Fay, Boston, MA

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

Fred Fay and Elmer Bartels of Boston, MA speak about bringing independent living into the vocational rehabilitation community, working alongside Ed Roberts, and advocating for Disability Rights.
Fred acquired a spinal cord injury at age 16; he became a leader for disability rights, founded the Boston Center for Independent Living, the Massachusetts Coalition of Citizens with Disabilities, and of the American Coalition of Citizens with Disabilities; he worked alongside many others to secure the passage of the ADA.
Elmer broke his neck during a hockey game in college; he soon became a political leader in the disability community and served for 30 years as Commissioner of the Massachusetts Rehabilitation Commission, eventually becoming director of the Council of State Administrators of Vocational Rehabilitation.

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

 


It’s Our Story

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

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

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

Email: ItsOurStory@gmail.com

Asian American woman in a black hoodie and in a wheelchair sitting on the left side. Next to her is an older White man with white hair.

Disability Visibility Project: Mike Rothstein, San Francisco, CA

Alice Wong, Project Coordinator of the Disability Visibility Project, had a chance to interview her friend and former ramp taxi driver Mike Rothstein on September 18, 2014 at StoryCorps San Francisco.

The following are approximate excerpts from their conversation.

On how Alice met Mike

Mike: I’m here to talk to Alice. Whose an old friend of mine and I was her cab driver for a long time.

Alice: It’s pretty funny that first you’re a cab driver that gave me rides around San Francisco, and we just hit it off and I don’t know [it’s so] unusual and just so wonderful that we became such good friends over the years. I know your family and, you know, we’ve done stuff together, and it’s just been a wonderful friendship and I feel like…these are the amazing kind of little miracles, chance encounters with people. I think I first met you in the late ’90’s when I first moved to San Francisco.

I had a ride from you and I think you offered me your number in the future. So, I think that’s how we started having these regular trips and you’ve always been so reliable…and we just naturally started sharing our stories and our lives together. So it’s, I don’t even remember when the transition from taxi driver customer relationship turned into friends, but I think one of the things was, when you dropped me off to my workplace. You told me you’re wife worked in the same building and I’m like, “No way!”

On paratransit services and the ramped taxi program

Alice: I will say that as somebody who moved to San Francisco from the Midwest, paratransit ramped taxi services, [were] really a gateway to independence. And   for listeners who don’t know what paratransit is, paratransit is a set of complimentary services to public transit that’s mandated by the Americans with Disabilities Act. So very often, cities are required to provide shuttle services for people with disabilities who for a lot of different reasons can’t use public transit. So they’ll do these shuttle services from your door to wherever you want to go.
And it’s often [these are rides] where you have to schedule ahead of time and a lot of times they may or may not be late. But it is an alternative for a lot of people with disabilities for, who just cannot manage to take public transit and that ensures that all people, all public people can have access to transit services. And what’s unique about subway system is that.

The ramped taxi service is another alternative. It’s another option to these kind of shuttle services. I noticed on the website of the San Francisco paratransit broker, they list ramped taxi services as a premium parent transit service that goes beyond the requirements of the Americans with Disabilities Act, and I feel like having this option of ordering a yellow cab…is really liberating and it makes you feel like you’re you can take a cab like any other person.

On becoming a driver in the ramped taxi program in the 1990s

Mike: Well, I think it was about 15 years ago, maybe a little longer. It started out as an experimental program with five vehicles.

Alice: Only five? Wow.

Mike: Might have been six…. And a guy named Nate [INAUDIBLE] who was the head of Yellow Cab, was very supportive of it, and a lady named Laurie Graham who is a cab driver [and it was] kind of her inspiration to, to do this. I’m not sure why she got involved in it. And there was a guy named Bruce Oka who was in a wheelchair, and he was very instrumental in the beginning and was six vehicles they put a lot of resources behind it so that we could talk the ramp drivers had their own radio channel so we could call talk to each other.

Alice: Oh wow.

Mike: So when someone called for a cab we’d talk among ourselves who was closest or where you were going if you were dropping somebody off near that person. And over, over time, it expanded. And Laurie Graham talked to me, and said, why don’t you get involved in this? So I started driving a regular cab three days a week, and a ramp taxi two days a week.

And at first we had a lot of troubles with the vans. They were not built for this kind of, the hills of San Francisco and the extra weight of having the ramps and the sliding doors on the right, on, on the right side, never worked right. And we asked, we always spent a lot of time trying to get the doors working right.

Features of a ramped taxi

Alice: Would you mind describing for the listeners about what are the features of a ramp taxi… and how it’s different from driving a regular taxi?

Mike: A regular taxi is just a standard car, where, where a, a ramp taxi is a van, with, they originally started off with a ramp that folded out on the side door, and a person in a wheelchair would come up the ramp and sit in the, what you’d consider the passenger front seat. And that was, it was very nice, cuz you had a much easier time of having a conversation with somebody. And then there were straps …and different mechanisms to tie the wheelchair and make it very secure to the floor of the van and seat belts are very secure for the people, but the main problem was those sliding doors. They just couldn’t stand the…hills and the sliding up and down. And we didn’t get good support from the paratransit program, as far as getting good vans.

Alice: Mm hm. And events change over time as I recall now, on the, seems like, all the ramp taxis have ramps coming from the back, rather than the side. In all the taxis that I’ve been in now, I enter from the back and there’s still a middle like passenger area. So, I’m really behind that passenger bench in the middle of seats. So, in a way, the driver’s kind of really far away in the front, so if I have to communicate something, it’s a little bit more difficult, but, other than that, I think, supposedly [the taxis are] getting better…is that… you’ve experienced over the years?

Mike: Yes, I think the rear entry worked much better…straightforward, in and out, or the side, [that is, if there’s a good] wheelchair driver. If it was a big motorized chair you have to scooch back and forth five or six times before you get lined up right cuz you have to come in, and then turn around to the right.

Alice: That’s right, and that can be a pretty tight. Turn, depending on the kind of wheelchair. So.. going straight in is probably better for a lot of different kinds of wheelchairs. And tell me about, was there any, like, resistance from drivers…it does take a little bit of extra time, and a little bit of extra work involved when it comes to securing that a wheelchair and opening the doors. Was there any kind of resistance from drivers to participate in this ramp taxi program?

Mike: It was purely voluntary. And, I think the novelty of it was, was fun at, at the beginning. So that why, that’s why we got a lot of drivers who were interested.
And at that point it also gave, you, you had a better chance of getting a good shift working…And our dispatcher would cooperate with us…he would, he would say, you call him out and tell him how long we’d take to be there so they had a heads up.

The regular wheelchair-using customers of Mike’s

Alice: …sometimes, you know, as a person with a disability you’re waiting out in the rain or in the weather and you really have no idea if that person will show up. And it’s a real sense of like, almost like insecurity, you know, or fear that, “Oh my gosh it’s been 30 minutes already, like, are they coming?” Because there are so many limited options, [especially] in the middle of the night, [when] you need to get home. You know, you can get really kind of scared and waiting for a ride but I’ve think having good communication has been really key. So obviously you’ve driven a van taxi for a long time. Tell me about your experiences picking up all types of people with disabilities…

Mike: Although we’re different sized people. I remember one guy who lived at Third and Folsom in an apartment building on Shipley. He must have weighed about 400 pounds. He had a huge wheelchair. It was always a challenge for him to get in and out. He was a great guy though so I was always happy to get his call. He knew most of the, the dispatchers calls when they would say 4th and Folsom. When you knew, when he called for Harriet, you knew it was Alice.

Alice: Yeah. [LAUGH] So, it seems like [you have a] familiarity with a lot of regular customers and you know? I [feel so lucky] I was one of …your regular customers and were there other kind of notable customers that you really grew to care for.

Mike: Well, there’s a guy named Peter Belton who had polio when he was a young man and he went to law school and eventually became the assistant to the Chief Justice of Supreme Court of California, a guy named Stanley Mosk, and Peter Belton was the smartest guy you ever wanted to meet. And he wanted a regular ride down to the Supreme Court building near City Hall, five days a week and a ride home. And one of my buddies, Fred, was also a ramp driver.

Alice: Yes, I know Fred.

Mike: It was too much for us, for either one of us to always pick up Peter… Cuz Peter demanded, he couldn’t understand if we weren’t exactly on time. Between Fred and I, we always pick them up within a few minutes of his time and if not we call them up and explain to them, we had his phone number and you would be sitting eating his breakfast when we got there and he would get ready in a hurry and he would come out with us. We always had great talks, he was a very liberal guy. And then we eventually met his girlfriend, Celia Bloom, who was also a polio survivor and my wife and I ended up going out to dinner with Peter and Celia many times. They were spectacular people. We were very lucky to meet them.

Alice: Yeah, so these are a lot of these regular longtime [customers]. And, I mean, you really provide a vital service to this community of people who, you know, for a lot of reasons, for example, like Peter Belton, who works, you know, having reliable transportation to and from work is key to his employment and his independence. And, I think, for a lot of people with disabilities, who cannot afford to buy their own van [this is key] because if you wanna drive your own van, it’s really, on top of the cost of a minivan to get it modified. It’s another 30-40,000. So, for a lot of reasons for people in San Francisco, not only do you not have a garage space, but you need to learn how to drive, get the modifications. It’s really an undue burden. And I think having the flexibility with ramp taxi drivers has been a real life saver. I know for me, it’s really great to have the actual driver’s phone number, so that I can call a few days ahead and say, “Hey Mike, are you busy on Wednesday at 1? Can you take me to…?” And…I think that kind of one on one relationship really makes it different from any sort of typical taxi driver-client relationship.

On the importance of being a ramp taxi driver

Mike: I just love the people. And it seemed like a very worthwhile service that we were providing. I always felt that being a cab driver was a very important service… And the people were just incredibly wonderful. And it was just fun. I used to do sometimes ten or 15 ramp rides a day.

Alice: Wow.

Mike: I did it for about ten years. And I think at the end it got to be too much of a financial burden for Yellow Cab to, to buy and maintain the ramps. The ramp taxis so they made the drivers who got the ramp medallions buy their own. That got to be very expensive for the drivers…. And if the cab companies could have kept buying and maintaining the, the ramp taxis, I think that’s, is to be a much better program now. The program is just kind of a shell of it, what it used to be.

Alice: Yeah, and I feel like That Golden Age of the late 90s, early 2000s really. I mean there was such a vibrant community and a really active ramped taxi driver community who supported one another and that’s really special period of time that you were part of.

On being diagnosed with Parkinson’s

Alice: Is it okay if we talk about another subject now?

Mike: Sure.

Alice: Okay …a few years ago…you started developing some symptoms and you now have Parkinson’s disease. So, it’s up to you, but would you like to tell me a little bit about how you first came to notice something was different?

Mike: I was starting to notice that I was getting these freezes, where I’d start doing something and my body would kind of stop and I was also getting very slow in my motor skills. And my wife noticed it. And I had low energy. And I didn’t get a tremor. But there were other symptoms and my wife knew about it. My wife worked in medical sciences. And she was pretty sure what it was. She never said anything to me. And once I went for my regular visit to my doctor, my family doctor. And Dr. Strokoff did a couple of tests and she immediately said, I think you have Parkinson’s.

Alice: What was it like when you first heard that word, Parkinson’s and the possibility you might have this disease? How did you feel what did you think?

Mike: I was pretty stunned. We were going to the museum to see an art show that afternoon after the medical appointment. And it took me quite awhile to really like have it sink in. I think. Several hours. And was I kind of shocked. But I had to, I had to go see a neurologist. To get it confirmed and he confirmed it almost instantly. And then, I started taking Levadopa… Artificial dopamine and that got rid of a lot of the symptoms.

Alice: And how do you feel now, after, you know, having this diagnosis and this disease for several years now? How, how has it kinda changed your life?

Mike: I think the main thing is I get tired a lot. So I, I have to take rests. I work a much shorter day. When I work, I only work seven hours. I used to work ten or 11. And when I’m finished with work I come home and I usually take a long nap. I love my naps. And I, there’s some side effects to the medication. I get kinda twitchy and, there, different facial mannerisms that I’ve noticed in myself, which I feel kind of weird about.

Alice: Yeah, I’m sure as new things show up [you might feel] kind of feeling uncomfortable about how it’s changing you, but also the way when you’re in public…Have you seen any changes in the way people have treated you or, perceived you or, has it not really been an issue?

Mike: Well I think I must look older.

Alice: [laughs]

Mike: People get up and offer me a seat when I get on the bus these days and I find this is really a good deal cuz I really appreciate that. I can’t stand very long…. And I’ve never talked about it with my grandkids. They know that I have Parkinson’s. My daughter’s talked it over with them, I think. And they’ve noticed that, that I was slower. And, sometimes, I just feel high energy, you know. They usually have remark about the fact that Grandpa’s walking faster or looks like has lots of energy. We still do a lot of things with them

Alice: Mm-hm.

Mike: And that’s the main thing I worry about is I don’t wanna look too weird for them but they’re very accepting.

Alice: Yeah, and I think…your kids, your grandkids, you know, they love you no matter how you express yourself and how you move, because they, they know you intimately and you know, I do know that sometimes people are afraid of scaring the kids around them, with their various mannerisms.

I think it was a privilege and honor for me to have this you know, lifetime of friendship with you, out of this very simple interaction, that could have just been…something that you could say oh…that’s just my taxi driver, but you are, you and your family are so much more to me. And I really wanna thank you so much for your friendship and I love you, Mike.

Mike: I love you, Alice.

 

Additional post-interview notes from Mike

Design of ramps and changes – the original ramp taxis had ramps that opened to the right side through a sliding door–  it sometimes was easy to parallel park the van and open the ramp onto the sidewalk —  the  person in the wheelchair had to maneuver to the front passenger position so had to be able to go into the van and execute a 90 degree turn – this was quite difficult for some people as space was tight – it was usually not a problem for non-motorized wheelchairs except a few  passengers who were exceptionally large or heavy – the present style is a van that has the ramp open straight to the back and the wheelchair goes in straight and then backs out straight – is a much easier maneuver – also the tie down device was improved to provide a quicker and safer transaction

Finance of vans– at the beginning the pilot program purchased the vans and the cab companies maintained them and temporary medallions were issued – that evolved into medallions being given to the drivers with the cab companies buying and maintaining the vans and the drivers were able to concentrate on picking up wheelchair rides whenever they were available – now the drivers must buy and maintain the vans so they have much more financial  demands and  are not as likely to have their first priority be the pickup of wheelchair orders – although the paratransit program has offered financial incentives to pick up ramp orders – this should work better for the drivers who lease the cab and are not the medallion holders – but I think the motivations of ramp van drivers has changed somewhat over the years but I actually do not know any ramp drivers to understand the present system


Mike Rothstein has lived in San Francisco for over 40 years. Mike drove a ramped taxi in San Francisco for over 10 years. He’s currently driving a Yellow Cab part-time. He lives with his wife Joyce McKinney and a gorgeous Maine Coon cat named Maytag.

Alice Wong, is a Staff Research Associate, Department of Social and Behavioral Sciences, UCSF. Alice works on various research projects for the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability and Rehabilitation Research and the Administration for Community Living. She is an author of online curricula for home care providers and caregivers for Elsevier’s College of Personal Assistance and Caregiving. Currently, she is the Project Coordinator for the Disability Visibility Project: A Community Partnership with StoryCorps and an advisory board member of APIDC, Asians and Pacific Islanders with Disabilities of California. Alice is also a Presidential appointee to the National Council on Disability, an independent federal agency charged with advising the President, Congress, and other federal agencies on disability policy.

Twitter: @SFdirewolf

LinkedIn: http://www.linkedin.com/pub/alice-wong/65/7b4/441

 

Photo of a South Asian man using sign language. The caption at the bottom of the image reads "I knew she was just kidding and we all had a good laugh about it"

Deaf South Asian Americans: Karthik’s First Days

The Disability Visibility Project loves it when people reach out to us and share their projects on disability history. Sarika D. Metha is a Producer for APA Compass on KBOO 90.7 FM, specializing in issues concerning race, ethnicity, and culture. She has a Bilingual/ELL Education, Deaf Studies, Early Intervention, etc. Sarika spent a decade serving linguistic minority communities, internationally in Costa Rica and India and domestically in Chicago, Champaign, SF Bay Area, Washington, DC and now, Portland.

Sarika has been documenting the stories of Deaf South Asian Americans. How cool is that?!?

Here is one story: Karthik’s First Days in America 

August 10, 2013

Karthik Sethuraman was born in Madras, and moved to Oklahoma City at the age of 20. He has also lived in Las Cruces, NM and most recently, Los Angeles, CA. Currently Karthik works as an IT Specialist in Washington, DC. He grew up communicating in Tamil and English with family and friends in India. He learned American Sign Language after moving to Oklahoma City, when a pastor used to drive him to church to meet other deaf folks in the community. He has incredible stories, for better or for worse, from his experiences in India and as a new immigrant in the US. You can learn more about Karthik in this previous interview.

This is another video in a series of stories I’m collecting, documenting the experiences of the Deaf South Asian American community in Washington, DC. These stories are a part of the permanent collection with the South Asian American Digital Archive (SAADA). While these interviews do not represent the entire community, they certainly offer some insight.

This story is part of SAADA’s project launch, “First Days” in which South Asian Americans describe their unforgettable experiences upon arriving and settling in the US.

In this video, Karthik describes an unforgettable but funny experience he had at O’Hare airport in Chicago, barring some tricky advice from his aunt back home.

http://vimeo.com/72059318

The entire post is here:

http://sarikadmehta.com/2013/08/10/deaf-south-asian-americans-karthiks-first-days-in-america/


 

Sarika D. Mehta

Website: http://sarikadmehta.com

Check out all the videos of Deaf South Asian Americans: http://sarikadmehta.com/category/video/

How Did We Get Into This Mess?: Hidden Disabilities; or, You Have No Idea What You Are Seeing by David Perry

Several months ago, Kanye West called out people with disabilities at his concert, stopping everything, demanding to know why they aren’t standing and dancing. David Perry wrote about this incident for CNN and a subsequent blog post based on emails he received from readers.

Below are excerpts from his blog post, How Did We Get Into This Mess?: Hidden Disabilities; or, You Have No Idea What You Are Seeing first published on September 20, 2014 where a reader described her experiences in public with a hidden disability:

Dr. Perry,

Thank you for writing about those that have physical issues that can’t be seen.

I suffer from pulmonary fibrosis, my lungs are so scarred that breathing is pretty difficult when I’m in motion. I also have polymyositis and my muscles weaken pretty fast when I use them for anything. Up until about 5 years ago I did triathlons and was in terrific shape. Fortunately that is one of the major reasons that I am still alive today – that I conditioned my muscles and lungs so well. The problem though is that I look to be in top notch shape but my insides aren’t worth a cuss!

When I go to public places and am unable to find parking relatively close, I park in the handicap space. I’ve had a handicap permit for two years now. There have been times when I get out of the car and people give me the meanest looks. Just last week a lady approached me, she was so angry that she was practically spitting when she spoke to me. After I pulled out my iPhone, showed her my medical info with all of my conditions, the meds that I take, the team of doctors that take care of me and all the procedures that I’ve had, she was in tears. She was a nurse and knew very well how debilitating my condition could be. Also as I talked with her it became very apparent that my breathing was becoming very labored – at rest I get that way when I’m stressed and talking long. Anyway, she thanked me for teaching her a valuable lesson.

My son plays for the COLLEGE SPORTS TEAM REDACTED. Just this past weekend I attended the game, had to park far from the stadium. A golf cart drove by, with handicap sign on it for those that needed a ride. I put my hand out to signify that I needed them to stop for me, twice the people driving said no, wouldn’t even listen to my explanation. The third guy stopped because I stood in his path. I explained my condition, he begrudgingly let me ride but made it very apparent that he didn’t believe me and was pissed that I was even in his cart.

I hope many read your column and think twice about judging those that look to be perfectly fine because they may very well have life threatening issues like I do.

Well thanks for letting me vent in the middle of the night – can’t sleep because of incredible pain from all of my medical issues. I will be forwarding you column to my friends, who understand but hopefully they’ll share with others that are not sensitized to this issue.

So here we have someone who had to prove her medical condition to a total stranger in a parking lots. This is the quotidian version of the Kanye concert.

In my comments, in my email, I have dozens of these comments, these stories, in which a challenging medical situation becomes harder because of our suspicion and doubt, because even a smart nurse educated in disability issues still feels the right to demand a diagnosis in the parking lot. Not even the right – that nurse with her medical knowledge felt a duty to question, to challenge, to force proof.

I offer three conclusions.

  1. Disability is not a binary, it’s not a yes/no, disabled/abled. Disability takes place along a spectrum, or rather multiple spectra, as we move in and out of disability over our lives or even over the course of  a day. Read more on this here.
  1. There is fraud. There will always be fraud. The question is how much fraud are you willing to tolerate in order to make sure people get the accommodations that they need? In the context of situations like social security, we have procedures in place designed to make it hard to get qualified. People do cheat the system, but there’s lots of evidence that people with hidden disabilities actually have a hard time qualifying, even if they need it. Any system doling out benefits will have fraud. It’s just a question of how much do we tolerate.
  1. As for parking. Reader 1 is angry because it’s a scarcity model. There are only a few parking spots, his mother and father-in-law sometimes can’t use a spot, and that makes him mad. It intensifies his suspicion. Instead, we need more spots, more accessible parking, more golf carts for rides, more universal design. The scarcity model causes problems.

For the rest of David’s post: http://www.thismess.net/2014/09/hidden-disabilities.html

 


 

David M. Perry writes about language, power, and privilege, especially on topics related to parenting, disability, gender, and history. His scholarly work focuses on Venice, the Crusades, and the Mediterranean world. In all cases, he examines the ways that people tell stories about their histories and identities and the consequences of those stories.

Perry is a professor of history at Dominican University. He is a regular columnist for the The Chronicle of Higher Education, and a contributor to CNN.com, Al Jazeera America, The Atlantic, and The Nation. He and his wife, a food scientist, are doing their best to raise a boy with Down Syndrome and a precocious and hyper-verbal girl.

Follow David Perry on Twitter, Facebook, and Google+. Email him here to arrange an interview, hire him to write, or to give a talk.

Black woman sitting back in a hammock with two young black boys on her lap. They are all smiling at the camera.

Guest blog post on autism and race by Morénike Onaiwu

On September 8, 2014, Savannah Logsdon-Breakstone featured a guest blog post by Morénike Onaiwu about the importance of the Autism and Race Anthology.

Below are excerpts from Morénike’s blog post, re-printed with her permission.

Though I was obviously “born this way,” on paper, I’ve only been “officially” Autistic for under a year. What now seem to me like obvious signs of being on the spectrum were always explained away as “something else.” For adult Autistic women, such experiences are not uncommon. However, I strongly believe that it is not just my gender that contributed to my being “missed” for over three decades. I am certain it is at least partially due to my color as well. You see, I am a black woman – and growing up, autism simply didn’t “look” like me.

My name is Morénike, and I am a board member of the Autism Women’s Network (AWN) as well as an Autistic advocate and parent (of Autistic and non-Autistic children). I’m honored to appear as a guest blogger today to post about a topic that’s very important to me – and that I believe should be important to you. Though I am somewhat of a newbie to Autistic advocacy, my interest and commitment are sincere. But regardless of who I am, this issue is one that I hope you will be willing to lend your support to.

There is a quite a bit more understanding of autism in 2014 than there was in the ’80’s when I was a child. However, one thing that hasn’t changed much is that neither the public “face” not “voice” of autism is reflective of the diversity of Autistic people, whom do not all have the same skin tone as Temple Grandin or the child actor from “Parenthood.” Autistics of all hues are working to increase the solidarity of various groups within our community and to amplify the voices of those of us who are less represented, so things are gradually improving. But change takes time. In the large, multicultural city where I live, I can still easily pick my two Autistic children out in a crowd when we attend local autism events; clearly there’s still much more to be done.

Fortunately, an exciting Autism Women’s Network (AWN) project is underway that will highlight the voices of Autistic people of color. Edited by another AWN board member, Lydia Brown (a talented Autistic writer and blogger), the project – an Autism and Race Anthology – will fill a much-needed void and will help to make the discourse surrounding autism more inclusive of racialized individuals. I cannot emphasize enough how significant this project is. However, to make this anthology a reality, we need help!!!

For the rest of the blog post: http://crackedmirrorinshalott.wordpress.com/2014/09/08/guest-post-morenike-onaiwu-on-why-the-autistic-poc-anthology-is-important/

Donate via the Autism and Race IndieGoGo.

Check out the submission guidelines for the anthology and consider submitting.

Image of a white woman taking a selfie of herself in front of a mirror. She is wearing a long blue dress and holding her cell phone in front of a mirror.

Guest blog post: Enough Enough by Kristen

The Disability Visibility Project loves tumblrs. We came across so many powerful and thoughtful tumblrs (and lots of funny cat ones too) such as Letters to Thrive, a tumblr of disabled women writing letters to their younger selves.

We recently came across a post by Kristen from i believe you | it’s not your fault. Please check out all the amazing posts from this tumblr. Below is an excerpt from Kristen originally published on August 6, 2014.

Enough Enough

Kristen

I thought if I could be “the smart girl” (or even “the nerdy girl”) then I wouldn’t have to be “the disabled girl.” Maybe people didn’t think of me like that, but I was certain that they did. I used to obsess over whether something happened/didn’t happen because I had a disability. Would this guy like me/think I was cute if I was “normal”? Would I have gotten cast in the musical if I didn’t have a disability? Would I have chosen a different career if I could stand on my feet all day? There is no way to answer to these questions, but I still wonder about them.

Being different is hard. It fucking sucks sometimes. I have been approached by complete strangers in all sorts of situations who want to know “what’s wrong” with my feet/legs/me. A grown woman yelled “HURRY UP!” at me when I was walking in the AIDS walk in high school. People have threatened to call the police when I park in a handicapped parking spot. Recently, a man working at the Las Vegas airport let me cut to the front of the taxi line, but not before yelling to everyone else in line that I was getting this privilege because I am “crippled.” In 2014, an adult male called me crippled. I’m sure some of you have heard much worse for your differences. if so, I am truly sorry.

I hope you’ll remember that being different (physical disability or otherwise) is not the same thing as being less than. You are already good enough, smart enough, and enough enough. Just as you are. Please don’t ever forget that. I’ll try not to, too.

For the entire post, go to: http://ibelieveyouitsnotyourfault.tumblr.com/post/93995632163/enough-enough

i believe you | it’s not your fault

Tumblr: http://ibelieveyouitsnotyourfault.tumblr.com

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

Twitter: @NotesFromBigSib

Photos of various people in wheelchairs inside the center of a train car.

Opinion piece by Jessie Lorenz: BART’s fleet of the future leave some behind

There’s still a long way to go when it comes to equal access to public transit. Jessie Lorenz, Executive Director of the Independent Living Resource Center of San Francisco, wrote an opinion piece for the SF Examiner on October 10, 2014.

Below are excerpts from Jessie’s opinion piece about BART (Bay Area Rapid Transit).

BART has long had an arms-length relationship with the Bay Area’s disability community, even though we are a legally-protected class. Several years back, the disability community sued BART to get them to repair and regularly clean elevators. Even so, if you’ve used a BART elevator lately, I’m sure you will be able to smell just how successful we’ve been in holding BART’s attention.

To make matters worse, BART regularly closes those same dirty elevators during police actions and civil disobedience demonstrations, leaving professionals who use wheelchairs, parents who are blind, seniors with arthritis and scores of others with disabilities stranded. We are, on the whole, people who do not have other transit options and are therefore dependent on BART — a fact that does not seem to interest them further in our plight.

The passing of the Americans with Disabilities Act in 1990, the increasing availability of ever-more accessible technologies and the growing number of aging seniors (often referred to as the “silver tsunami”) are all excellent reasons to consider people with physical limitations and our place in society in all transportation decisions.

More and more of us are paying taxes and thriving, but bureaucracies, such as BART, seem to view our concerns as though we’re coming to the table with a cup in hand. Instead of being seen as a constituency, we are viewed as a PR problem.

Take, for instance, the new car design this spring. BART’s mock-up showed several problems for people with various disabilities. It included floor-to-ceiling poles in locations that would make it even harder than it already is to get on and off of the train. These poles would lead to crowding in the area near the entrance doors and would be positioned so as to encourage passengers to stand right where wheelchair and scooter users need to travel to get to and from the designated wheelchair seating space.

It is already a problem for wheelchair and scooter users to get on and off BART cars due to this congestion at the doorways so adding the poles would make this problem much worse. Poles are also dangerous because they are in the way of people who are blind or low-vision who are trying to quickly enter and exit the train.

Despite a major outcry from the disability community on these issues, one article included a picture of people with disabilities touring the mock-up with a caption that read, “Access issues in an earlier mock-up have been fixed.” Media bias such as this only feeds BART’s dismissal of our concerns. It was certainly NOT the consensus among people with disabilities who toured the mock-up or who were pictured in BART’s PR blast that the problems had been “fixed.”

For the rest of the article: http://m.sfexaminer.com/sanfrancisco/barts-fleet-of-the-future-leaves-some-behind/Content?oid=2908825


Jessie Lorenz

Twitter: @JessieLorenz

Independent Living Resource Center of San Francisco

Twitter: @ILRCSF

Screenshot from The Ellen Show where Ellen Degeneres is dancing with a person in a wheelchair.

Dear Ellen Degeneres, From A Wheelchair-Using Viewer

Dear The Ellen Show,

One of my favorite parts of The Ellen Show is when Ellen busts a move and dances with the audience at the start of each episode.

I notice how Ellen always makes a point to dance a few seconds with wheelchair users who are located in the front and it’s always cool to see that.

My holiday wish is for The Ellen Show to create wheelchair-accessible seats integrated with the entire audience rather than separate and at the very front.

A wheelchair user myself, I have limited seating options when I go out to the movies, theatre or other live events. While technically ‘accessible,’ I feel removed and excluded. The physical distance and separation reinforces the social distance many people with disabilities face everyday.

Wouldn’t it be great if a wheelchair-user can enjoy The Ellen Show with the entire audience, since so much of the joy and excitement comes from the audience’s interactions with Ellen?

Sincerely,

Alice Wong, One Mean Dancing Machine

@SFdirewolf