Drawing of a man with brown hair. He is wearing a red sweater and eyeglasses. The background is purple. He also has a tracheostomy

Guest blog post: Digging Up Disability History by Andrew Pulrang

Andrew Pulrang is one of our media partners and a prolific blogger over at Disability Thinking. The following is an excerpt of a post he published on July 23, 2014. Since the Disability Visibility Project celebrates history, we were obviously interested in this piece.

Digging Up Disability History

Andrew Pulrang

I have seen several versions of this story about the skeleton of a person with Down Syndrome, dated to the 5th or 6th century A.D. Most of the references present as established fact the idea that because the child was buried the same way, with the same burial rites as others in her clan, it shows that people with Down Syndrome were fully integrated, valued members of their communities, even in the “Dark Ages”. Even though this article acknowledges how little we really know about ancient attitudes towards disabilities from such sparse evidence, I still find this new evidence tantalizing.

A few years ago, one of the first audiobooks I listened to was History Of The World, Updated, by J. M. Roberts. In one of the early chapters, Roberts mentions that archeologists had found the prehistoric remains of a man who appeared to have had a physical impairment. Yet, he also appeared to have died fairly old. Roberts speculates that the man probably had to be sustained by his clan, and indeed, this man, too, seemed to have been buried surrounded by gathered flowers and nick-nacks … indicating that the people of that age were more than just beasts that looked human. They were, just maybe, compassionate and sophisticated in their understanding of human value.

At the other end of the historical scale, the article refers to the fact that in the 1800s, people with disabilities were quite often integrated into their communities, and only separated and institutionalized later, during the “Progressive Era”. In fact, how the well-meaning “progressives” of the early 20th century dealt with disability is an important reminder of how good people throughout history often get things wrong … sometimes terribly wrong … and confuse altruism and charity, with prejudice and condescension.

For the rest of the blog post: http://disabilitythinking.blogspot.com/2014/07/digging-up-disability-history.html


Do you have a blog post you’d like to share with the Disability Visibility Project? Would you like to write a guest post for us? Email Alice: alicat155@gmail.com

 


 

For more about Andrew: http://disabilitythinking.blogspot.com/p/about-me.html

Disability Thinking blog: http://disabilitythinking.blogspot.com

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

Twitter: @AndrewPulrang

Tumblr: http://disabilitythinking.tumblr.com

LinkedIn: http://www.linkedin.com/pub/andrew-pulrang/7/647/945

Email: apulrang@icloud.com

Asian American woman in a black hoodie sitting in a wheelchair on the left and on the right is a middle-aged white woman with brown hair pulled back holding a white cane.

Disability Visibility Project: Janni Lehrer-Stein, Part 2

Alice Wong, Project Coordinator of the Disability Visibility Project, had a chance to interview her friend Janni Lehrer-Stein on September 25, 2014 at StoryCorps San Francisco.

This is the second and final post. The following are approximate excerpts from their conversation.

On the role of litigation and advocacy

Alice: Sometimes it’s unfortunate that to really force people or the state or agencies to change, that lawsuits are often the drivers for this. So what are your thoughts in terms of relationship between advocacy and using the law?

Janni: Unfortunately where we stand right now, legislation is a very long drawn out and uncertain process. Litigation has some of those same characteristics. You never know which way a jury trial is going to go but litigation has certainly proved to have some efficacy on access issues for Americans with disabilities. I still am very optimistic and think that advocacy and collaboration between government, private sector, nonprofits and stakeholders is the way that we can really make effective change and in the shortest period of time, and I regret when it comes to litigation to get an issue resolved.

On serving on the National Council on Disability

Alice: And speaking of advocacy and working with stakeholders, you and I are both Presidential appointees on the National Council on Disability and I feel like I was really lucky when I was appointed about a year and a half ago, that I was paired with you as my mentor/buddy. And I was, delighted actually that we’re both from San Francisco so we could actually meet in person…And I remember how we immediately gravitated toward similar issues and similar ways of approaching people and advocacy. I mean, one of the topics that we immediately found passions with for social media and accessibility. So tell me a little bit about your tenure as a council member…

Janni: I am so privileged that I actually have just entered my second term as a member of the National Council on Disability. I was appointed by President Obama in May of 2011, confirmed by the Senate at the end of that month and I very quickly became engaged to many of the issues that you and I have had the opportunity to really dive into with great intensity. You know, the great thing about the NCD is that it is so completely diverse. We are diverse geographically, by disability, by philosophy, and expertise. And so when we get together as a group of 15 it may be difficult for us to come to a point of agreement on any particular point, but…the wonderful thing about the NCD is that we do bring all these different perspectives to the table… and I am just so delighted and privileged to be a part of this group.

On current strides in disability rights with the Obama administration

Alice: You’ve obviously are really in tune to politics and the change and you and I are ardent Democrats and Obama supporters. You’ve seen different administrations come and go. What has been kinda the changes in terms of the way administrations have treated or thought about disability policies or programs and what have you seen in terms of the ups and downs and reflecting on where we are now with the Obama administration and what they’ve done in terms of advocating for people with disabilities?

Janni: The Obama administration has really made tremendous strides and has been incredibly committed to insuring that Americans with disabilities have every opportunity for full inclusion and participation. Obama has been responsible for major pieces of legislation being passed that benefit Americans with disabilities specifically. The 21st Century Television and Communications Accessibility Act is just one example. He has been instrumental in ensuring that employment opportunities are available to Americans with disabilities, in his endorsement and assistance in the passage of Section 503, which is a law that encourages all federal contractors to have 7% of the workforce as people with disabilities and the list truly goes on and on. I’m so excited by 2019 we will have tactile currency available for the first time in this country. And the benefits of this administration are truly to be applauded and I hope that it becomes part of the lasting known legacy for the Obama administration and certainly for the administrations to come.

Alice: Thank you so much for talking to me today, Janni. I’m going to treasure it.

Janni: What a treat.


Janice ‘Janni’ Lehrer-Stein is a member of the Board of Directors of Medical Research Charities — a national federation of research focused non-profits, which solicits and directs employee donations to the Combined Federal and State Campaigns. She is a National Trustee of the Foundation Fighting Blindness and was Chair of the 2010 and 2011 Dining in the Dark dinner in San Francisco, which increased awareness about people with blindness and low vision. A board member of Disability Rights Advocates, a non-profit law firm working to improve access and secure the civil rights of individuals with disabilities, Lehrer-Stein holds a Juris Doctor degree from University of Toronto and a Bachelor of Arts degree from Yale. She was diagnosed with retinitis pigmentosa in 1982 and is legally blind. In her personal capacity she is involved with the DNC and Ready for Hillary!

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

Asian American woman in a black hoodie sitting in a wheelchair on the left and on the right is a middle-aged white woman with brown hair pulled back holding a white cane.

Disability Visibility Project: Janni Lehrer-Stein, San Francisco, CA

Alice Wong, Project Coordinator of the Disability Visibility Project, had a chance to interview her friend Janni Lehrer-Stein on September 25, 2014 at StoryCorps San Francisco.

This is the first of two posts. The following are approximate excerpts from their conversation.

On being blind and using technology

Alice: I guess, would you like to talk a little bit about your background and a little bit about your disability, if you don’t mind?

Janni: No problem. I am a blind citizen. Progressively blinded over the last 35 years due to a congenital disability that is called retinitis pigmentosa or RP. RP gradually diminishes vision, taking first the periphery and then the center and over the last 35 years or so, since I was diagnosed in 1982, I have had the experience of having my vision decrease to the point where it is at the barely functional stage… I have a very limited amount of vision. It’s scatter shot, some in my upper left periphery but although I am able to perceive most shapes, I can also easily miss things that are right in front of me or to the side. And I use a cane to identify myself and assist me on the streets and until very recently I had a wonderful guide dog named Nanaimo who has recently retired to enjoy his old age at home.

Alice: Sweet, sweet Nanaimo, a black Labrador who’s just so loyal, so attentive, and just really attuned to your needs. And in terms of technology, how do you use technology in terms of accessing the internet and all your basic daily needs?

Janni: You know, we’re so fortunate to be living in this day and age because technology is an incredible aid to someone who is vision impaired or nearly blind the way I am. I am able to use smartphone technology because most of the apps that are available are able to be turned on to audio. My computer also reads to me and while the technology is not perfect, it is fairly easy for me to be fluent on my computer, on my laptop…The difficulties are of course that that doesn’t replace vision. And I’m hopeful that as technology continues to evolve so will the assistive technology that enables people like me to fully participate in every aspect of society.

Impact on the ADA for blind people

Alice: How has…the ADA changed or has it made improvements in terms of what you’ve seen in terms of access for people who are blind?

Janni: It’s a very interesting question. You know the great thing about the ADA and the fact that we are almost 25 years into the enactment of legislation, is that it’s almost a seamless part of our landscape. The ADA has really permeated almost every aspect of life education, transportation, health services, employment and when it is properly acknowledged and implemented, it really enables someone like me, with a fairly severe disability, to be fully included and participating in life just the way everybody else is. The same expectations, the same ability to perform, and very closely, very nearly, the same enjoyment level.

Alice: … so I would like to know a little bit of your take on the…misconceptions about the ADA, …what do you think people should know about, in terms of the rights of people with disabilities and that it really is a civil right, but what is your take in terms of your background as a lawyer?

Janni: I guess one of the biggest concerns that I have as a person with a disability in talking about the ADA is just being sure that everybody understands that is very much part of the civil rights movement in America. And maybe the last frontier, but is most definitely a full participant. So just as people have the right to speak freely and to live the lives that they choose, so do Americans with disabilities. And the ADA is simply the vehicle that enables people with disabilities to participate in society as completely as anyone else.

On continued barriers and discrimination

Janni: There certainly have been moments in my life where I have been frustrated by my inability to participate in whatever life function it is that I am seeking to engage in at that moment. Mostly these issues for me involve transportation. Transportation is very difficult for someone who is blind, can not see and can not drive and until very recently there are many barriers to both public and private transportation. I’m hopeful that with the help of technology and with the increased acceptance and implementation at the ADA that many of those barriers will fall away and my life has continued to improve in that respect.

Alice: Yeah and it’s you know, very sad commentary to me I think that despite the ADA being in place for pretty much 25 years that time and time again people with service animals, when they take taxis, they are outright discriminated and refused rides. And this continues to happen…and service animals are continually not allowed in restaurants, and other public places. Even though it’s clearly…stated in a ADA that it should be allowed. So, have you had any encounters like that?

Janni: The guide dog issue is something that has been very close to my personal experience for a long time because I had the great privilege of having a relationship with my dog Nanaimo…[he] went with me just about everywhere as he was entitled to go and as I needed him to do. I don’t think that people truly understand the intense value of being served by a guide dog. The guide dog really takes on the responsibility for your safety…I don’t think that the vast majority of the American public really appreciates the tremendous experience and the value of guide dogs or the extent to which they are true professionals. So many times I would be out in public and someone would ask if they could pet or play with my guide dog because the guide dog is still a dog.

Alice: Mm-hm.

Janni: And looks like an adorable pet, just like so many other adorable dogs. But in addition to that, there have been many times where I have been denied access to a restaurant, to a store, to a taxi, to a bus, because I have a dog with me and I think it is imperative as for long as we are here and we have disabilities we continue to reach out and educate people about their legal rights to have and use guide dogs and encourage the American public to support of those who use guide dogs and get such benefit from their use.

On the recent landmark case on NYC taxi cabs

Alice: And, speaking of transportation and recently through your advocacy and work with Disability Rights Advocates’ major landmark case in terms of increasing taxi cabs in New York City, please tell me a little bit about that experience…and ultimately what happened.

Janni: So Disability Rights Advocates is a nonprofit law firm that operates with its head office in Berkeley and a branch office in New York City. Shortly after the New York City was opened, which was just actually about four years ago, the New York branch filed a lawsuit against the New York Taxi and Limousine Commission because the taxi and limousine commission was both considering what they called the Taxi of Tomorrow to replace the current yellow taxi cab fleet….and also to impress upon the citizens of New York, the Governor and the Taxi Limousine Commission the need to have fully accessible taxi cabs. That litigation went through a number of years. A trial was conducted and Disability Rights Advocates succeeded on their named plaintiff, United Spinal. There was an appeal and a remand back to the… lower court and just very recently, it was actually just last week, an announcement was made that the full impact of that litigation and subsequent settlement has been approved in the state of New York and by 2020 50% of the taxi cabs which are on the streets of midtown Manhattan will be fully accessible to all people with disabilities regardless of what those disabilities are whether it’s mobility or sensory…. I was merely a member of the board of directors encouraging them on…We had a wonderful staff attorney. His name is Sid Wolinsky and he’s a iconic legend in the state bar of California and he was very ably supported by Ms. Julie Pinover, who is head of our New York office.


Janice ‘Janni’ Lehrer-Stein is a member of the Board of Directors of Medical Research Charities — a national federation of research focused non-profits, which solicits and directs employee donations to the Combined Federal and State Campaigns. She is a National Trustee of the Foundation Fighting Blindness and was Chair of the 2010 and 2011 Dining in the Dark dinner in San Francisco, which increased awareness about people with blindness and low vision. A board member of Disability Rights Advocates, a non-profit law firm working to improve access and secure the civil rights of individuals with disabilities, Lehrer-Stein holds a Juris Doctor degree from University of Toronto and a Bachelor of Arts degree from Yale. She was diagnosed with retinitis pigmentosa in 1982 and is legally blind. In her personal capacity she is involved with the DNC and Ready for Hillary!

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

A white background with a blue circle and a little needle sticking out like a compass. Inside the circle are the words in blue: APA Compass

Media Partner #78: APA Compass, Portland, OR

APA Compass is a collectively produced public affairs program.  Our mission is to provide a forum for dialogue, exploration, and dissemination of issues pertinent to Asian Pacific American (APA) communities; to unite, politicize and empower APAs; to raise awareness of social and economic justice issues; to highlight the parallels and intersections between APA experiences and the experiences of other groups; to provide media access, mentorship and training to APAs; to promote APA art and culture; to challenge racist representations and to enable APAs to define themselves.

Website: http://kboo.fm/APACompass

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

For an index of past podcasts, visit apaCompass.wordpress.com

Image on the left of an open book with a tree coming out with the words: Open LORE. On the right side are the following words: "Read. Grow. Discover."

Media Partner #77: Open LORE

From their About Us page:

Open LORE LLC is a privately held company specializing in reading software and accessible e-books specifically designed to support readers with dyslexia, ADHD, Irlen Syndrome, and other reading difficulties. Open LORE LLC, based in Beaverton, Oregon, was established in September 2012, launched its first commercial e-books in March 2014, and first reading software product (Open LORE Read) in July 2014.

We believe in making text accessible and enjoyable – especially for those who struggle with the reading process. Our products create an intuitive and fun reading environment aligned to today’s e-book technologies.

Additional information about Open LORE’s products, classic books, book distributors, and the Reading and Learning Disability community can be found at http://www.open-lore.com.

Facebook: http://www.facebook.com/openlore

YouTube: http://www.youtube.com/openlore

African American man wearing a dark suit and a tie. He's sitting in a wheelchair and smiling at the camera.

Guest blog post by By Lateef McLeod: My Experience As An Intern With Sins Invalid

My Experience As An Intern With Sins Invalid

By Lateef McLeod

For three years I had the immense privilege to have an internship with the great organization Sins Invalid. Sins Invalid is a performance project collective led by artists of color with disabilities that produce work dealing with disability and sexuality. Sins Invalid’s two main leaders and co-founders, Patty Berne and Leroy Moore have worked diligently to make sure their organization have international acclaim. The organization is famous for their annual theater show where artists with disabilities put on skits about sexuality. Before I was an intern I was a performer in their annual show in 2007 performing two of the performance pieces that I wrote and I was in their Artist-In-Residence program in from 2010 to 2011 that led to another performance. Throughout my years working with Sins Invalid I was impressed to the organization’s dedication to disability rights and a new practice entitled disability justice.

Disability justice is a core theme that Sins Invalid promotes in all of their performances, workshops, community discussions, and other services they provide in for the public. Essentially the philosophy promoted the idea that all people had bodies that should be accepted as whole and equal in our society whether their bodies are differently abled physically, cognitively, or psychologically. The philosophy also promotes the reality that all people have to contend with multiple identities such as race, gender, sexuality, class, religion, nationality, as well as people’s differing disabilities and we need to feel free and encouraged to live exhibiting our whole identities in society. My introduction to disability justice and my relationship to my colleagues at the organization, Sins Invalid was the most influential internship that I had in my life.

What I valued most about my internship is the political education that I received being a part of the organization. Both Patty Berne and Leroy Moore have extensive knowledge in disability history, rights, and culture that I tried to gleam from over the years. We have had many political discussions on various topics intersecting with disabilities that assisted in my framing on how I position myself politically as an artist and person with a disability. We have an annual event entitled Making Connections where we invite members of the community to participate in a discussion on topics that intersects with disability like for example how capitalism affects our disability or how we can engage in spirituality through a disability gaze. I was fortunate enough to organize and lead two of these events, which were great successes. I also participated in internal political discussions with just Sins Invalid staff that widen my grasp on certain issues.

Being involved with Sins Invalid has made me see what is possible as a writer and artist with a disability. Patty and Leroy have exemplified about what it means to be professional artists with disabilities who have steadily built up an audience fan base that spans internationally. They have both developed a platform where they are seen as leaders in their field and are invited to many conferences and workshops as expert public speakers. This is exactly the position that I am working to be in. I feel fortunate in being their understudy and soaking up all the knowledge they have to offer. I really admire their level of professionalism and want to emulate that in my own career.

At Sins Invalid I also observed first hand how to have political integrity in my career. I witnessed how at Sins Invalid our political footprint has been strategically used to support some good causes. Here is a previous Disability Visibility Project blog post about Sins Invalid that you can view at this link: http://disabilityvisibilityproject.com/2014/09/07/sins-invalid-statement-on-police-violence/, it states how the organization joined a protest against Urban Shield, which is a program that gives military grade weapons and equipment to police forces all over the United States. This over militarization of our police force has a direct correlation to the increase police shootings and murder of black and brown people exemplified by the recent murder of Michael Brown in Ferguson, Missouri. I was honored to stand with Sins Invalid in the Urban Shield protest and I feel honored to belong to an organization that shares my political convictions.

So as I approach the end of my Sins Invalid internship it is bittersweet because of how influential it was. I will definitely miss working with the talented and dedicated artists on producing and promoting art and culture on a weekly basis. However, I will be in the Sins Invalid’s major theater production next year so be on the look out for that. Sins Invalid cannot get rid of me that easily.

 

 

Middle aged white woman with shoulder-length brown hair. She has sunglasses on with reflective lenses and a black blazer and purple t-shirt

Media Partner #76: Susan P. Mazrui

Susan P. Mazrui works in Public Policy at AT&T and has worked in the communications field for the last twenty years. In this capacity, she has presented at numerous conferences and events and had work published in professional journals, books and magazines. She has also had poems and commentary published in small press and on websites. Her best known poem is Disability: The Power and the Pride. Ms. Mazrui received her Masters Degree in Education from San Francisco State University. Ms. Mazrui taught graduate and undergraduate courses at San Francisco State University. She currently serves on the Board of Directors for the US Business Leadership Network and the US International Council on Disabilities. Ms. Mazrui was diagnosed with Multiple Sclerosis as a teen and currently uses screen readers and other assistive technology in her work. She is married and has two children. Ms. Mazrui was the 2002 Summit on Leading Diversity Corporate Fellow, was inducted into the Spinal Cord Injury Hall of Fame in 2008, received Careers and the disABLED Magazine’s 2013 National Employee of the Year Award and was named Champion of Diversity at AT&T in 2014.

Asian American woman in a wheelchair sitting on the left side. She's wearing a red hoodie and glasses. Next to her is a white middle-aged woman with her hair pulled back and wearing a floral-print shirt. Both are smiling at the camera.

Disability Visibility Project: Ingrid Tischer, Part 3

Earlier, the Disability Visibility Project published a blog post featuring an interview of Ken Stein by his wife Ingrid Tischer. Alice Wong, Project Coordinator of the DVP interviewed Ingrid at StoryCorps San Francisco on July 24, 2014.

This is the last of three posts containing approximate excerpts from their conversation.

Connection between disability rights and civil rights

Ingrid: You mentioned being self-hating earlier.

Alice: Yeah.

Ingrid: I’m not gonna pretend like… that hate doesn’t exist in me, because of course it does, but I think that there’s another side to it that deserves a fair amount of attention. And you kind of touched on it, too, just now with your question. The performative thing. You know, by the time I went to college and when I was in college yeah, whenever people talk to me like, well you know, “Do you think of yourself as disabled?” I’d be like well, “I guess yeah, but I don’t think about it that much.” Well, it’s like, cause at the time I was, I’ve always wanting to pursue career in civil rights in some capacity. I never really [COUGH] sadly, made the connection [between] disabilities and civil rights…

If younger people, for example, aren’t told about the civil rights history related to the disability identity, then I think frankly it becomes a whole different animal to accept.

Alice: Right, yeah, and it’s a political identity… in addition to cultural and individual identity.

Ingrid: I think, you know, pretty much when people think of disability rights, if they think kindly of it or whatever…I still think they think of it largely as something I support because somebody I care about will be benefited by it…If we can, if I can look at it more or less as a jumping off point for serving the wider community, you know, ‘cuz frankly, I think most of the things that the disability community wants allegedly just for itself, really. Make a better world for everybody because everybody is vulnerable at some point. And that’s what it, that’s what disability to me is really about: vulnerability and safety.

Alice: And I’ll also say interdependence.

On culture change

Ingrid: Well, to me, disability stuff now is not so much about, “What can the movement do for me?” but “What am I gonna do with the movement for everybody else?” It’s a way of giving service.

Alice: I definitely believe [in thinking about disability] rights from not just the individual, but from the system level and really, at an institutional level. And real culture change, that’s the toughest part, I think, is making people understand…that’s the harder road to take. Right?

Ingrid: We have to be Crip evangelists.

Alice: And heal ourselves?

Ingrid: No, we have to spread the Gospel of living as a Crip.

Alice: And then we should heal, heal the non-disabled and let them see…

Ingrid: Share the goodness.

Alice: The error of their ways…

Ingrid: Although we are going to convert you…

Alice: Yes, this is part of the plan.

Ingrid: This is assimilation.

Alice: Thank you Library of Congress for letting us infiltrate the system. Thank you NSA, we know you’re listening…[laughter]

Ingrid: …if you can look at what is going to make the world a safer place for anybody who is vulnerable in some way, whether because of age, or you know, extreme youth or injury or whatever, you know. That’s not just disability. That’s a bigger goal… but we have the insight, I think, into it, and the experience, because we’ve lived as people with disabilities. That’s what I mean by it.

Alice: I agree. I think we have a lot to offer and this is why I think we need to share in those views so that it helps…other people and other groups and other, you know, movements that may not even be aware of what we do and our perspective.

Advice for young people with disabilities

Ingrid: And I would just say to remember that there’s got to be something that you’re good at and better at than a lot of other people and that that’s really, I think, what gets people ahead in life is by focusing on what they’re actually good at and what they care about. And it may not be something that you’re even aware of at this moment, but the, the key is to find out what it is… Because if you like it, you’ll want to keep doing it and getting better at it and that will draw other people to you eventually.

Alice: And ignore anybody who tells you that you can’t pursue this and that you can’t do it because of your disability. There’s always a way to pursue what you want to do…I heard so many people tell us, you can’t do that, “There’s no way.” And all it takes is a real imagination and it’s really, just, you know, ingenuity, and it can be done. I think we both are people who have seen that happen.

Ingrid: I will say too, even though I’m physically more disabled now in my 40′s than say in my teens, I feel a lot less disabled now. Because the people I’m around most of the time are older people. And older people, frankly, are dealing with their own issues and they treat me differently…when we were all younger. Being a teenager was probably for me the hardest time to have a disability. And good or bad, it ends.


Ingrid Tischer became DREDF’s Director of Development in 2011. She’s been a Bay Area-based fundraiser, non–profit manager and activist for nearly 20 years. Her staff and consulting work has supported free healthcare services, human and environmental health policy, gender and LGBT anti-discrimination, employment civil rights, and disability rights. She got her start in 1992 in a grassroots women’s clinic before moving on to cutting–edge advocacy organizations Breast Cancer Action, Equal Rights Advocates and the Legal Aid Society – Employment Law Center. Her media advocacy experience has involved working in coalition with the Labor Project for Working Families, MomsRising and The Impact Fund. She has served on the Women’s Community Clinic Advisory Board, is an alumna of the Women’s Health Leadership (WHL) Program for emerging women healthcare leaders, and has been a faculty member of the California Asset Based Community Development (ABCD) program. Her writing has appeared in The Progressive, Ragged Edge, off our backs, and other outlets. She holds a B.A. in Philosophy from The American University in Washington, D.C.


 

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

 

Image of a tree made of a figure of two outstretched hands as the trunk of the tree in brown. Other banshees are extending from the 2 hands with various green leaves.

Media Partner #75: Signs of Change Story Project

We love learning about other storytelling projects by the disability community at the Disability Visibility Project. Thank you to Cathy Waugh for telling us about Signs of Change.

From their website:

Positive changes in our mental health system have occurred over the last few decades as the stories of those treated in the mental health system were recognized. We have been able to understand the history of services from the people who lived it. From these stories we have learned what we need to change. As stories were shared we were able to see the strength and potential in the blurred lines between consumers, family members and providers. These stories have taught us the beauty and strength of cultures that may be different from our own.

Yet there is a cultural group in our mental health system whose stories have not yet been recognized. Individuals who are deaf and have a mental illness often remain invisible in our system of care and thus our ability to develop competent systems of care are limited. Signs of Change Story Project, LLC is dedicated to sharing the stories of these individuals with the hope that it will move us closer to a fully integrated and culturally competent system of care.

Signs of Change Story Project will donate a portion of any profits from the publication to the continued work of building awareness and meeting the needs of individuals who are deaf or hard of hearing.

If you are interested in submitting a story:

http://www.signsofchangestoryproject.org/submit.html

Story collection is occurring through December 1, 2014. You may submit multiple stories up until that deadline. Stories may be emailed after the date, but may be too late for printed inclusion.

Send questions to stories@signsofchangestoryproject.org

Asian American woman in a wheelchair sitting on the left side. She's wearing a red hoodie and glasses. Next to her is a white middle-aged woman with her hair pulled back and wearing a floral-print shirt. Both are smiling at the camera.

Disability Visibility Project: Ingrid Tischer, Part 2

Earlier, the Disability Visibility Project published a blog post featuring an interview of Ken Stein by his wife Ingrid Tischer. Alice Wong, Project Coordinator of the DVP interviewed Ingrid at StoryCorps San Francisco on July 24, 2014.

This is the second of three posts containing approximate excerpts from their conversation.

On having a progressive condition that changes over time

Alice: … you mentioned that you weren’t a wheelchair user as a child and I see that you are one now. How has it, your disability, changed your life, over a lifetime…and how has it kind of changed the way you do things and organize things in your own life?

Ingrid: Part of it is about expectation. You know, I mentioned that I was diagnosed with cerebral palsy when I was like two and I had that diagnosis until I was about eleven when we just happened to go to another a different doctor because we moved. And they said, “No we really don’t think this diagnosis is right.” And I found out I had muscular dystrophy. The difference there is that, you know, muscular dystrophy is degenerative and it’s progressive and cerebral palsy is stable and non-progressive. So, I kind of went from thinking like, “Well, at least I’ll always kind of be like this. Maybe I’ll even get better.” To realizing, “Well, it’s gonna be downhill slowly, but it’s still downhill.”

The name [muscular dystrophy] for it has always been kind of a placeholder, so as far as like using a chair or using a walker, using a cane, to me its like not having a clear diagnosis kind of set me on the path of not really thinking about what might be coming up so as long as I could walk. I was a walker… when it finally just became impossible, then I transitioned and I think, I realize in retrospect, I could have made things a lot easer on myself by accepting accessories and tools earlier than I did.

Alice: … when we first became friends, it was so exciting to meet somebody else with SMA [spinal muscular atrophy and how] we both have scoliosis… in my case I was a wheelchair user at an early age and to me [it’s so odd to see so many people with muscular dystrophy fighting tooth and nail]… to remain walking and to remain mobile. And you know, [there's] often [a] feeling that, I’m not saying you…that being in a wheelchair is a huge symbol of the trajectory in terms of progression and the downward spiral, which I have to always giggle because, you know, I have been down this downward spiral farther than you. [LAUGH] And I’m like, “Its okay, join us, you’ll save energy, there’s nothing wrong with being in a wheelchair!”

Ingrid: Okay, first of all, you’ve got two people with muscular dystrophy sitting here. Neither one of us yet has uttered the words being stricken, and of course we should clarify that we are not on the verge of death.

Alice: And we are not suffering.

Ingrid: So anybody who’s listening to this

Alice: Yeah, that’s right. We’re not near death.

Ingrid: So, but we’re talking about trajectories, because it is it is something about our condition that it does change over time, and it’s not, you know, I’m joking here, about this… I’m talking to you, the listener, this downward spiral. [LAUGH]

Alice: We are being silly.

Ingrid: This death march.

Alice: Morbidly humorous, but don’t take it too seriously. This is just our crip comedy.

Experiences with employment and health insurance coverage as a young adult with a disability

Ingrid: By the time I was in college or in and out of college and through dealing with these things, things had changed. My parent’s insurance was no longer covering me. I had good employer coverage through my own job, but…didn’t cover the same stuff, and MDA [Muscular Dystrophy Association] had stopped paying for a lot of things. So there were times when…I have a doctor tell me like “You should really be doing blah, blah, blah…” and I’d say, “How much does that cost?” And the doctor would wave the question off and say, like, “Don’t worry about that.” And I’m like, “I have to worry about that.”

And then when I was 27, I had a medical crisis where I ended up in ICU for a week and I discovered that I’d been living with sleep apnea for at least fifteen years.

Alice: Me, too… I was oxygen deprived all through [high school and college].

Ingrid: Me too. The thing was they sent me home with this machine…they didn’t tell me the cost and I found out that my HMO through my job had a $2000 dollar a year cap. And I started getting bills for $700 a month and I still think I have an outstanding bill for however many thousands of dollars. A friend of mine happened to be the head of HR where I worked. She called the broker. She made some calls and I got on to Kaiser, even when I wasn’t supposed to be able to. So the only advice I was getting, from social workers was, “It looks like you’re gonna have to quit your job… then you’ll be on public benefits”…. I was 28 years old.

Alice: And these are the…negative messages that…are given to people with disabilities where yes, you can do anything. You know we have these laws, we have equal opportunity but yet you know what, when you get more disabled and you need supports and services, you have to be on Medicaid [which means you will have] limits to how much you can earn.

So how would any young person in their right mind have to choose between a life on Medicaid, which is, I mean, it’s a subsistence life….you’re on the margins basically. Or, like what you did, you cobbled together resources and you remained working…these are choices that no person should have to make.

On being considered disabled or severely disabled related to work

Alice: On paper to doctors… [based on] our diagnoses and stuff… we are considered severely disabled. And yet depending on the program or other things, just because you accomplish things and are working, somehow it makes you less disabled, which is often, I think, a real bias because people just conflate these things together. They assume that having a disability is an inability to contribute and participate in society and that those who do are some how not really disabled.

Ingrid: I think what’s really hard for anybody. The way I see it is that if you don’t have a disability, basically you are encouraged to always present yourself in terms of what you can do. That’s your identity, hopefully, if you have a healthy sense of self. The things that you can’t do are simply the things you haven’t learned how to do yet, or that you didn’t really care about in the first place. It feels like the message that a person with a disability…your identity is based on what you’re unable to do…It’s how well you can argue for not being able to do something…. fuck that. Who wants that?

On developing a disability identity

Ingrid: …for me accepting that disability identity in a way was hugely, unsually difficult because it felt like I was buying into a group mentality that I didn’t necessary feel was authentic to me. I can do it now at 48 ‘cuz I already have sense of how I am…but it was harder when I was 18.

Alice: Yeah, I mean, for me. I was definitely one of those, like, self-hating, you know, I really wanted to be assimilationist and trying to blend in with the crowd. And I definitely had my own biases toward other people with disabilities. I do think that, as we get older, the ideas of disability have expanded…So that when we do claim this identity, it’s far more nuanced…there’s more variation now, in terms of the disability. I think…within the last decade or two, there’s just been a huge, kinda, transition toward disability pride…that’s analogous to LGBT pride. What it’s really about is the cultural aspects versus the whole functional, you know, medical aspect.

Ingrid: It started to think crips as a type of being queer. You know we’re quips [queer crips] !!

Alice: You heard it first, readers, listeners. Trademark pending.

Ingrid: Queer crips. Quips! [LAUGH]


Ingrid Tischer became DREDF’s Director of Development in 2011. She’s been a Bay Area-based fundraiser, non–profit manager and activist for nearly 20 years. Her staff and consulting work has supported free healthcare services, human and environmental health policy, gender and LGBT anti-discrimination, employment civil rights, and disability rights. She got her start in 1992 in a grassroots women’s clinic before moving on to cutting–edge advocacy organizations Breast Cancer Action, Equal Rights Advocates and the Legal Aid Society – Employment Law Center. Her media advocacy experience has involved working in coalition with the Labor Project for Working Families, MomsRising and The Impact Fund. She has served on the Women’s Community Clinic Advisory Board, is an alumna of the Women’s Health Leadership (WHL) Program for emerging women healthcare leaders, and has been a faculty member of the California Asset Based Community Development (ABCD) program. Her writing has appeared in The Progressive, Ragged Edge, off our backs, and other outlets. She holds a B.A. in Philosophy from The American University in Washington, D.C.


 

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