Image of a white circle and dividing the circle horizontally are the words: Disability Network. The word Lakeshore is along the lower right part of the circle. The background is aqua blue

Media Partner #49: Disability Network/Lakeshore, Holland, MI

We are thankful to have the support of Disability Network/Lakeshore! DNL helped us spread the word about our project as StoryCorps’ Mobile Tour stayed in Grand Rapids, MI recently.

From DNL’s website:

Each year at Disability Network/Lakeshore, we help over 1,500 people with disabilities to lead productive lives. Our efforts not only benefit these individuals but also their families and the wider community in the lakeshore area. We have been serving Allegan and Ottawa counties since 1992.

Our mission is to connect people with disabilities to resources and opportunities while building communities where everyone can participate, contribute, and belong. Our dream is to create engaged citizens and livable communities. To that end, our staff works to provide information, referrals, and support to people with a wide variety of disabilities.



#JusticeForIssy: Statement by Autism Women’s Network

The Autism Women’s Network recently released a statement in regard to the attempted murder of a young teenager with autism, Issy Stapleton, by her mother. Recently the parent, Kelly Stapleton, pled guilty to first-degree child abuse despite admitting to attempted murder. She has not been sentenced yet.

Image description: pale pink background with whimsical dragonflies in the upper left and lower right corners of the graphic. Text reads: “Autism Women’s Network an Intentional Community”  Below the text is an assortment of words and phrases in multiple fonts, text size and burgundy colored hearts scattered throughout the image. The assorted words read: “Neurodiversity, Respect, Disability Rights, Activism, Community, Autistic, Autism Acceptance, Inclusion, Presumption of Competence, Advocacy, Disability Pride, Diversity, Intersectional, Identity First, Functioning Label Free, Inclusive, Social Justice”


AWN Calls for Zealous Prosecution in the Attempted Murder of Issy Stapleton

Earlier this week, an autistic teenager in Michigan survived a murder attempt committed by her mother, who is now facing criminal charges. The Autism Women’s Network is deeply saddened and profoundly concerned at yet another situation in which a disabled person has been targeted for violence by a family member. Our work seeks to challenge the dominant narrative of disability as defect, deficiency, and disorder, because this narrative paints a disabled person’s life as a tragedy and a burden. This is precisely the kind of attitude that leads to justifications for violence against disabled people, when policymakers and the media alike encourage the public to sympathize with the aggressors rather than the victims.

There is no excuse for murder or any other form of violence directed against disabled people. Lack of adequate supports and services does not lead to murder. The attitude that disabled life is lesser or of less value does. This year alone, we have come to learn of numerous cases in which disabled people were murdered by people who should have been supportive and loving. In each of these cases, the rhetoric of excuses and justifications for the murderers has dominated public discourse about the lives of people with disabilities.

We urge law enforcement and prosecutorial offices to commit to thorough investigation and zealous prosecution of these acts of violence as hate crimes. Until our legal system begins to recognize that these crimes are connected by the same attitude of hatred for people with disabilities, those who commit them will continue to be able to do so with impunity. The work of the Autism Women’s Network is predicated on developing communities more responsive to the needs of autistic women and more inclusive and accessible to all people with disabilities. Our goals of equal access and opportunity will never be achieved for as long as the law treats violence against disabled people as excusable or acceptable.


Here are a few tweets about this case using the hashtag #JusticeForIssy


Autism Women’s Network is to provide effective supports to Autistic women and girls of all ages through a sense of community, advocacy and resources.

The Autism Women’s Network is dedicated to building a supportive community for Autistic women of all ages, our families, friends and allies.  AWN provides a safe space to share our experiences in an understanding, diverse and inclusive environment.

AWN is committed to recognizing and celebrating diversity and the many intersectional experiences of Autistic women. AWN welcomes all women, supporters of women, those who have at one time identified as women and non binary gender variant individuals.  AWN recognizes and affirms the gender identity of each individual.  AWN also welcomes the support and community of those who do not and have not identified as women as allies to support us in our work. If you have additional questions, please contact Lei Wiley-Mydske, AWN Community Outreach Coordinator:




Twitter: @Autism_Women

A series of 4 images in a row. Left to right: image of two people with recording equipment; image of two women at a disability pride parade; image of a wheelchair; image of a person laying down with a sign practicing civil disobedience

Podcast: Race and Disability, Pushing Limits, KPFA 94.1 FM

Check out one of Pushing Limits’ recent podcasts originally broadcasted on July 18, 2014, 2:30 pm.

Race and Disability

Black and brown people have always been present in the disability movement and some have played pivotal roles. Yet our conversation about race is often pretty unsophisticated. We’re a long way from truly supporting all our community members and, like in the rest of the U.S., people of color with disabilities are frequently the last to be included. At the same time, movements for racial equality and disability rights overlap and inform each other. Disability Justice activists Patty Berne and Lateef Mcleod join white woman Adrienne Lauby for a conversation about where we are and where we could be in the partnership of race and disability.


For more about guests Lateef McLeod and Patty Berne:

Pushing Limits is produced at KPFA radio in Berkeley, California, by a collective of unpaid staff members. It airs the 1st, 3rd and 5th Friday of each month at from 2:30-3 pm at 94.1 fm. Their mission is to have a show produced by people with disabilities that reflects people with disabilities’ culture and thought in the Bay Area and beyond.


Pushing Limits on KPFA:


Hashtag Conversation #AbleistAbuseIs

On September 9, 2014, a twitter conversation emerged using the hashtag #AbleistAbuseIs exploring the experiences of people with disabilities, discrimination, abuse and ableism. Hashtag created by the incomparable Heather Ure! Follow her on twitter: 

Here are a few of our favorite tweets:


Hashtag Conversation #StateOfRights

On September 9, 2014, the U.S. Department of State and the Newseum presented “Citizen Activism: Building Coalitions for Civil Rights,” a discussion of how people and organizations came together to push for legislative changes and subsequently shaped the future of the United States.

From the Civil Rights Act of 1964 to the Americans with Disabilities Act of 1990, and the countless pieces of civil rights legislation in between and since, the American public consistently used First Amendment rights to petition Congress, raise its voice, and assemble in the streets, diners, and buses to demand change. The resulting coalitions shaped U.S. history as business leaders joined civil rights activists to push for better laws and a new generation of student leaders rose to the occasion to make some noise.

The Department of State hosted the following speakers as they discussed the people and groups that envisioned a more perfect Union and rewrote the laws of the United States:


Here are a few tweets from the conversation using the hashtag #StateOfRights

Logo on a blue arm holding a green arm. The words read: Hand in Hand: The Domestic Employers Network

Media Partner #48: Hand in Hand

We want to encourage people with disabilities to tell their stories and that can involve stories with their home care provider or personal care attendants. Thank you to Hand in Hand: The Domestic Employers Network for supporting the Disability Visibility Project!

From their website:

Hand in Hand is a national network of employers of nannies, housecleaners and home attendants, our families and allies, who are grounded in the conviction that dignified and respectful working conditions benefit worker and employer alike. We envision a future where people live in caring communities that recognize all of our interdependence. To get there, we support employers to improve their employment practices, and to collaborate with workers to change cultural norms and public policies that bring dignity and respect to domestic workers and all of our communities

Since we were founded in 2010, people with disabilities, many of whom employ home attendants, have been in leadership in Hand in Hand. People with disabilities have been in leadership in overall organizational development as well as our involvement in campaigns. We bring together people with disabilities in community to support each other in building mutually-positive relationships with the attendants we employ, to come together with workers to learn about each others communities (including how they overlap!) and take action together for change.



Twitter: @HiHemployers

Man in a red short-sleeved shirt in a wheelchair in the doorway of a StoryCorps recording studio

Guest Blog Post: “Just do it!” by Scott Rains

I have one thing to say about Alice Wong’s gift to the US disability community known as the Disability Visibility Project:

“Just do it!”

My friend and sometimes travel companion Denise DeShetler and I just did. There are two main reasons why I did this interview.

The first reason is because I wanted to record publicly that Universal Design was already a concept known and promoted in Seattle in 1975 after my partner and co-founder of the University of Washington Disabled Student’s Commission returned from meeting Ron Mace in Washington DC and we began to use it as our base reference in all we did.

The second reason is because we are in the midst of a ridiculously politicized struggle for the US to ratify the United Nations charter based on the ADA – the Convention on the Rights of People with Disabilities (CRPD). I want my part of this oral history of the first 25 years ADA Era available to educate Senators, their staff, and the general public.

On to a few things I didn’t say in the 40 minute Disability Visibility Project recording.

I didn’t mention that I only pulled rehabilitation and spinal cancer because of the love of family and friends. Some like Chris, Bill, Anita and Margaret here kept my mind active and my hopes projected forward. Some, with an inspired subtlety filled my hospital room with stories full of laughter and our close calls on the ski slopes. A few simply camped out in my hospital room for hours on end infusing me with the will to live by their silent, intense vigil of soul-to-soul presence. Among those Pamela Mottola stands out for the quality of presence she created. I have been on 30-day silent retreats that failed to open doors of perception that her quiet attentiveness unlocked. Her one visit, to tell me she was engaged to be married even as I lay 17 years old and expected to die, set up a near death experience where I had the choice to continue to live.

Stories matter. They saved lives like mine.

To put it another way as Robin Williams once said:

“I used to think the worst thing in life was to end up all alone. It’s not. The worst thing in life is to end up with people that make you feel all alone.”

Tell your story in the Disability Visibility Project.

I also didn’t say mention that I have a body that seems to be hardwired to teach me one simple paradox. “Interdependence is our starting and ending point. Independence only happens by working together.”

Today I read about the heroic, but unsuccessful, efforts of passersby to try to save an Alsatian locked in a hot car while its owner was nowhere to be found. On the same page was the story of a young woman filmed, mocked and abandoned by passersby at St. Botolph’s Priory in Colchester, Essex where she lay on the ground in a seizure.

What did Robin Williams say? “The worst thing in life is to end up with people that make you feel all alone.”

Interdependence burnishes away the corrosion of indifference and the illusion of self-sufficiency from our keenest points of contact with the world. Yes, the friction with that hard reality is often painful. At those keen points lies vulnerability. That corrosion insulates us from the electrifying shock that happens when one person’s need is exposed; that unifying solidarity when one groups needs are articulated and when those needs are met.

In my 42 years of wearing out wheelchair tires training about Universal Design in a dozen foreign countries I have never found one where the ADA is not known and fairly well understood. That is true even in countries with nothing close to the strong institutional and political forces we have fought to build leading up to and living out the ADA. But in all cases, the power me of telling our story and them meeting someone who is living the lifestyle made possible by the ADA is palpable.

To tell your story register online to record your story then walk, roll or hitch a ride over to the nearest StoryCorps recording booth. If you have a disability, tell your story. If you are family, friend, coworker or ally of someone with a disability think about participating too. The StoryCorps model is based on the simple observation that telling a story in conversation can be a very moving experience for those who hear it. In this case it will become part of the archive of a generation’s experience of the past 25 years of the Americans with Disabilities Act – the ADA.

Just think of the power of my rendition of our story multiplied by yours!


Photo of two people speaking in front of each other a recording booth. On the left is a young white woman with blonde hair and a white shirt. On the right is a white older man in a red shirt using a wheelchair.

Dr. Scott Rains writes daily on travel and issues in the tourism industry of interest to people with disabilities. His work appears online at and . Rains’ articles have also appeared in New Mobility, Emerging Horizons, Contours, Accessible Portugal, Audacity, Travel and Transitions, eTur Brazil, Turismo Polibea, [with]TV, and Disaboom among others. For his research on the topic of Universal Design and the travel and hospitality industry he was appointed as Resident Scholar at the Center for Cultural Studies of the University of California Santa Cruz (2004-05).

He is active as a consultant and speaker.

Screen shot from the YouTube page featuring videos about the Disability Rights Movement in Cleveland, OH

Disability History: Disability Rights Movement in Cleveland, OH

I want to thank Cheryl Gorham of LEAP (Linking Employment, Abilities and Potential) for reaching out to me. I received an email from her telling me about a set of interviews on YouTube documenting the disability rights movement in Cleveland, Ohio. John Leoni, graduate of Case Western, recorded an oral history of the Disability Rights Movement in Cleveland, OH and created 12 videos. These interviews were conducted from 2005-2006. Many thanks!

The first video is an interview with Mary Verdi Fletcher of Cleveland’s Dancing Wheels Company & School. She discusses growing up with a disability.

I remember saying “I will never come back”

For more about Mary Verdi Fletcher:

Check out all 12 videos:


Do you know of videos, oral histories or interviews of people with disabilities in your local area? Email Alice:


LEAP‘s mission is to be a consumer-driven agency that is committed to ensure a society of equal opportunity for all persons, regardless of disability.







Photo of an older white man in a red shirt and using a wheelchair. He is next to a younger white woman with blonde hair. They are in front of a StoryCorps recording booth.

Disability Visibility Project: Scott Rains & Denise DeShetler

Scott Rains and Denise DeShetler recorded their story at StoryCorps San Francisco on August 9, 2014. Below are a few excerpts from their conversation. Thank you for sharing your story, Scott and Denise!!

On parallels between civil rights, anti-war movement and disability rights movement:

Scott: I was a part of making Washington State accessible, making Seattle the first place that had an accessible bus system in the world. And like I said setting up the Disabled Students Commission at the University of Washington put me in touch with some amazing people. And I think, something that really confirmed this direction in my life from here, or gave it shape, besides just the general interest that I always had in, in civil rights, was somebody that we brought to the University. And I don’t think it was a disabled students commission, but he came to visit us. And, he was a black man. He was involved in civil rights. Knew Doctor King. But I’ve forgotten his name…And when I asked him for, sort of, insider tips and organizing and you know what to do in our movement. His first question was, well, what does your community want? And, it’s basic organizing 101. You ask your community what they want, but, when he said it, when he emphasised the word community.

It resonated with everything about the beloved community, everything that Dr. King was talking about at the time. And I realized that this transformation that I was going through, this physical and psychological transformation that I was going through, from, from being a really active guy to being somebody, you know, who, half my body wasn’t, wasn’t doing what I wanted it to. My call was, was to a community. And for a community. And so that’s when I was confirmed. But it gave me, a real different perspective too…

I did the rehabilitation that was suppose to do physically and all that sort of a thing. But I wasn’t doing it, for me except, just the basic maintenance stuff. I was really looking for rehabilitation answers, or architectural answers, or community answers. And so that launched me really into the international stuff that where you know me traveling around the world. I wanted to take what I knew and, and bring it to other places.

On universal design:

Scott: And the universal design says…imagine us in, imagine us in from the beginning, think of us as customers, think of us as students, think of us as parents, and design, look at what our bodies need, how our bodies move, how tall we are, how strong our grip is, how good our hearing is. And make adjustments…there’s some amazing stuff going on. I just came across reference to deaf blind design, and there’s a blind architect here in the San Francisco Bay Area who’s doing some amazing stuff. Both in the way you plan, and the way you design projects. Deafspace is is coming out of Gallaudet …there’s been design changes in dormitories there. Aisles are wider, hallways are wider, why? Because deaf people need to be looking at each other, so they need to be walking side by side. Things, things like that that I never thought about in a wheelchair…and so I end up focusing a lot on you know wheelchair ramps and elevators and that sort of a thing. But it really means much more than just someone in a wheelchair or even somebody with you know what we call a disability.

…one of the good things now is that the definition of disability has really changed. We, we talk about disability as an interaction between environment and body. So that, you can really, do away with disability. To architecture, or even attitude.
And that sounds absurd because a building can’t make me walk, but a building can make it, if it’s done right, so that it doesn’t matter that I can’t walk. I can still do what I need to do and. Equally as important, what everybody else gets to do in that building.

And that’s, that’s where we say, you know, disability is this, is this interaction between, between function, what, what the function that your body can do and the build environment around you. Because every time you build something, every time you change the, natural environment, you’re doing it, according to some value, according to some goal and, those goals can either, exclude or include, other people. Universal design we’re trying to say, you include the broadest number of people, the broadest range and type of people that you can.

…if Universal Design means something. It means that we can change our economic system and our, and our built environment and our attitudes toward you know, what can be productive work and what can be accommodated work space. I think that with, inclusive tourism which is, which is my word for applying universal design to, to tourism. I think that we’re gonna continue to spread these attitudes…Seeing more people with disabilities out there, doing the things that they would like to do, doing the things that they thought were you know, they were restricted from doing. I think it’s gonna, it’s gonna make actually some waves. Some, some revolutionary changes and expectations. In, developing countries as, as well as already developed countries.


On changing notions of bodies and inclusion:

Denise:  I think that if I leave behind a sense of, the world… that the world can be built around bodies as they are and not idealized bodies and, human bodies as they change over time. That idea of, acceptance and inclusion. There’s… one bit in my personal biography, that, i’d like to, see, turned concrete. Or at least to see something concrete happen out of that. When I was, in high school I got to go to, Brasil. When I was, in college I got to go back again and I got [a] scholarship to study at Brazil’s finest university, the University of Sao Paolo. Aah, well, it didn’t turn out. I got down there, and they weren’t interested at all in, accommodating me changing classroom or anything like that. So, I had to come back. But, I would like to see it so that students with disabilities can travel around the world when they’re young, get this cross-cultural experience…

Photo of two people speaking in front of each other a recording booth. On the left is a young white woman with blonde hair and a white shirt. On the right is a white older man in a red shirt using a wheelchair.

Dr. Scott Rains writes daily on travel and issues in the tourism industry of interest to people with disabilities. His work appears online at and . Rains’ articles have also appeared in New Mobility, Emerging Horizons, Contours, Accessible Portugal, Audacity, Travel and Transitions, eTur Brazil, Turismo Polibea, [with]TV, and Disaboom among others. For his research on the topic of Universal Design and the travel and hospitality industry he was appointed as Resident Scholar at the Center for Cultural Studies of the University of California Santa Cruz (2004-05).

He is active as a consultant and speaker.


Denise DeShetler is a Certified Massage Therapist and an Accessibility Wellness Consultant. She has gained over 10 years experience working with people with disabilities in the US and Europe as a Therapeutic Recreation Specialist, a Sea Kayak Guide for E.T.C., a Special Olympics Coach and a Provider of Accessible International Travel Programs.

Denise is currently running a private massage practice for disabled & able bodies and helping Wellness/Travel professionals become more inclusive in their communities.


Left: Yoshiko Dart, Center, Anita Cameron, Right, Andy Imparato

People We Love: Anita Cameron

This is a great quote from Anita Cameron:

“Civil rights are not given. You must fight to get them, then, fight to keep them.”

An African-American woman in a long-sleeved red and white shirt. She is wearing eyeglasses and holding a microphone at a meeting.Anita Cameron is an activist and a member of ADAPT. She describes herself this way: “I’m a disability rights activist, CERT instructor/Program Manager, writer and cat lover who has been fighting the good fight for almost 30 years.”

More on Anita Cameron:


Do you have a quote about disability rights or disability history you’d like to share with us? Email Alice: