Our ADA Stories

It’s less than 2 months until the 25th anniversary of the Americans with Disabilities Act on July 26, 2015!!

The Disability Visibility Project is proud to partner with the National Council on Independent Living for the #OurADAStories social media campaign.

Purpose

To celebrate the rich diversity of the disability community and the impact of the ADA on our everyday lives and activities.

The Disability Visibility Project invites people of all ages to submit a photo or message from now to July 26th. Some things to consider when thinking about your ADA story:

  • What does advocacy, disability rights, and the disability community mean to you?
  • How has the ADA impacted your life and society in general?
  • What are the good, bad, and ugly aspects of the ADA? What is the unfinished business of the ADA?
  • How do your cultural identities (e.g., race, language, gender, gender identity, age) impact your disability or vice versa? ‬
  • What does the future of disability rights and the lived experience of disability look like?
  • What can we learn across generations within our community?

How To Participate

1) Tweet your story! It can be a written message, selfie or a photo of things you see in your community that relates to disability rights. Be sure use the hashtags #OurADAStories and #ADA25 in any tweets! Follow @DisVisibility for updates. Example:

2) Post an image or written message to the Disability Visibility Project’s Facebook group (you have to join first). If you post an image to this group, please include a written description of your image.

 Get creative! Share your story and celebrate

disability culture and history!

Any questions? Email Alice Wong: alicat155@gmail.com

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: Kate Gainer, Atlanta, GA

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 June 15, 2010:

Kate Gainer of Atlanta, GA speaks about her identity a black female with a disability in the south and how she grew into a life of disability advocacy.

Gainer was born with cerebral palsy. She has been part of demonstrations supporting legislation such as MiCASA and now serves as the Disability Affairs Coordinator for the City of Atlanta.

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

Media Partner #87: Bay Area Arts Access Collective

The Disability Visibility Project is thrilled to have the Bay Area Arts Access Collective (BAAAVC) as our latest media partner!!

From their About page:

The Bay Area Arts Access Collective (BAAAC) is a collaboration of museum professionals, educators, disability advocates, and community-based organizations in the San Francisco Bay Area, who are dedicated to developing meaningful and enriching arts experiences for all patrons with disabilities in the Bay Area.

BAAAC also strives to promote access and equity in the arts for all San Francisco Unified School District (SFUSD) students with disabilities, and aligns itself with the goals of the Arts Education Master Plan.

BAAAC is a forum to exchange ideas, share resources, and inspire accessibility and inclusion in the Bay Area arts community.

BAAAC aspires to educate, empower, and inspire museums and cultural spaces to become accessible and welcoming.

Website: http://www.bayareaartsaccess.org

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

Update on DVP: Extended to December 2015

This year has been very exciting for the Disability Visibility Project with over 70 stories recorded so far by people from each StoryCorps location and the Mobile Tour.

Originally, the project planned to end July 2015. Please note that the participants can continue recording their stories at StoryCorps locations  and the Mobile Tour tagged for the Disability Visibility Project until December 2015. 

Now and after December 2015, people are welcome to use the new StoryCorps app and record their stories. For more details on using the StoryCorps app:

http://disabilityvisibilityproject.com/2015/04/02/new-storycorps-app-the-disability-visibility-project/

For any questions feel free to email Alice Wong, Project Coordinator: alicat155@gmail.com

Save-the-Date-2015DCAD

Disability Capitol Action Day: A History

Disability Capitol Action Day is an annual event coordinated by The Disability Action Coalition as an opportunity for people of cross disabilities and their allies to come together in solidarity for learning, resources, unity and to share the current issues that affect their daily lives in California.

Below is a joint interview with Teresa Favuzzi, Executive Director of the California Foundation for Independent Living Centers (CFILC), and Christina Mills, Deputy Director of CFILC, two individuals who have been involved with Disability Capitol Action Day for many years.

For people unfamiliar with Disability Capitol Action Day (DCAD), how would you describe it?

I’ve been involved in the disability community most of my life and I have had the opportunity to organize, attend and participate in a variety of different types of disability community activities; sports, conferences, meetings, parades, and so on. There are few events that keep me as charged up as the annual Disability Capitol Action Day at the State Capitol does. It’s the one time during the year that people with all types of disabilities, ages and cultural backgrounds come to Sacramento to advocate for change. In my opinion, there is nothing more powerful than seeing hundreds of people with disabilities in one place and one time year after year because they believe in the cause and know that disability social justice doesn’t happen overnight. Disabled youth get to engage with disabled role models, learn about advocacy issues impacting our daily lives and get involved. Adults with disabilities have an opportunity to share their stories, hangout with their likeminded peers and take part in educating their legislators on a particular issue. Most people who attend take a stroll through the disability resource fair on the west lawn, listens to speakers and policy makers during the educational rally and then go into the State Capitol for a visit with their legislator.

A large number of people sitting in folding chairs under a tent.

To the best of your knowledge, how did this day come about? Who came up with the idea and what year was the first DCAD?

The first DCAD was 12 years ago. The idea came about in a conversation between Teresa Favuzzi the statewide community organizer for CFILC and Virginia Knowlton an attorney and public policy director at DRC. We were discussing how DRC had a small lobby day at the Capitol-a hand full of people, and CFILC just held a lobby day [with the] ILCs to rally with the California Medical Association to increase provider rates.

We talked about how we didn’t know what the other was doing and that we should be working together. And, we should be thinking bigger and getting people from all over the state across all types of disabilities and ethnicities and languages to have a multicultural disability Capitol action day.

Teresa Favuzzi wrote for a grant to the California endowment and it got funded…and that is how it all began.

We wanted a day at the Capitol right after the May budget revision to tell policy makers how the budget decisions would affect our community.

The capitol building in the background, Sacramento, California. In the foreground on a green grassy lawn are red tents throughout the lawn.

What is necessary in organizing a massive advocacy event such as Disability Capitol Action Day? What are the elements that make it a success?

Having a coalition of organization that are like minded, all together working to organize this without an hidden agendas for the California disability community is what really makes it happen. Over the years the coalition structure has evolved. In fact, this past year, 11 years after the original event, we finally realized that we needed bylaws. Our coalition now includes officer positions and has a structure that is in writing. The coalition behind the event is made up of organizations that are working for or on behalf of people with disabilities and topics that the disability community prioritizes. The coalition meets once a month most of the year, but meets more often as the event date gets closer. We also have workgroups. Workgroups meet in between coalition meetings and are focused on different parts of the event. We have an educational rally, resource fair, public policy, media and outreach, fundraising and logistics workgroup. Each has a very important role to play in the coalition.

Fundraising for the event is primarily the organizers responsibility and huge component to putting the event on from one year to the next. Christina Mills has organized 7 out of 12 of the Disability Capitol Action Day events and can tell you all kinds of stories of what it takes to raise a minimum of $30,000 a year to host DCAD. $30,000 to host an event may sound steep to some. However, when you’re talking about organizing an event for the disability community, making it physically and programmatically accessible, plus offering simultaneous Spanish and Chinese translation for our allies in other communities and renting the chairs, tents, tables, stage, sound system and purchasing lunch for 1,000 people the funds add up quickly. Since the beginning the coalition has also strived to raise funds to mobilize community members that otherwise would not be able to attend. Most years we have been able to award around $10,000 in transportation scholarships and this year is no exception.

Disability Capitol Action Day is a disability resource and lobby day for our community. There are few funders who can fund something like this. That’s why grant writing for the event isn’t usually an option. We got lucky the first year when the California Endowment funded us, but since then we’ve only seen 2 – 3 other small grants support our effort. Instead we depend on business and organization sponsors and individual donors.

Laura Hershey, a white woman in a wheelchair with a mouthstick and nasal mask in a wheelchair. She is wearing a white sundress with flowers. At her left is her personal assistant standing by her side, with her hand on the wheelchair.

Writer, poet and activist Laura Hershey [in the wheelchair] and her personal assistant [left] at DCAD 2007. For more on Laura Hershey: http://www.laurahershey.com

Describe some successful outcomes the resulted from activism during Disability Capitol Action Day that you are aware of.

It’s rare to see hundreds of people with disabilities in one place at one time. Disability Capitol Action Day is one of our nation’s largest most diverse disability events. People come from all over the state and represent a wide range of cultural groups, age and ethnic communities, which is a very important part of the event. The disability community includes everyone! You can become disabled at anytime and wind up one of us. You don’t have that opportunity in many other communities. When we come together on DCAD it’s powerful. With all of our unique backgrounds and experience we visit our legislators for the same reason…equality! We educate and advocate to live independently in the community, to make programs and services more effective and to remind the people that we elect that we have a voice and that our vote matters.

We’ve had many wins over the years. We’ve prevented state budget cuts to programs and services that we depend on from being completely abolished. We’ve been able to keep family members as paid IHSS providers and we’ve been able to keep many bills that could have stripped us from our independence in dignity from passed by the Legislature and signed by the Governor.

As the 25th anniversary of the ADA approaches this July, what are your hopes for this year’s Disability Action Day?

The anniversary of the ADA marks a significant milestone for the disability community, but yet we are constantly advocating to keep what rights we have intact. This year we have seen several access bills introduced by members of the legislature. Most of the bills are intended to limit the rights of our community. I’m sure other minority communities feel the same way when I say; I’m tired of feeling like a second-class citizen and not being treated with respect and equality. The ADA was intended to open doors and give people with disabilities opportunities and yet we still have the largest population of unemployed people in this country and are fighting for basic access needs on a daily basis.

Continuing to foster and build what has become a strong youth with disabilities community and presence is critical. It’s the youth today that are going to be responsible for what happens in the future and where we are come the 50th anniversary of the ADA. The fact that YO! Disabled and Proud is organizing and hosting ADA Forums at DCAD and around the state this summer speaks volumes to the fact that youth care about civil rights and want to work towards furthering the ADA.

What do you see in the future for Disability Capitol Action Day? How can it be improved? Who else needs to join this effort?

There will always be a need for Disability Capitol Action Day and as long as the community keeps coming and telling us that they want it we will continue to work hard and raise the funds necessary to make it happen.

Jack Campbell, a white man in a wheelchair wearing khakis and a black shirt [left], with Tom Olin photographer and historian of the disability rights movement, a white man with a beard and glasses holding a camera and kneeling down [center] and Marilyn Golden, a white woman in a wheelchair with long brown hair of DREDF [right] at DCAD 2007.

Jack Campbell, former Systems Change Advocate from ILR Concord [left], Tom Olin, a photojournalist covering the disability rights movement [center] and Marilyn Golden of DREDF [right] at DCAD 2007.

Please share any other thoughts or memories about Disability Capitol Action Day in terms of its historical significance.

I have two favorite Disability Capitol Action Day years…the first was when we brought one of the plaintiff’s, Lois Curtis, from the Olmstead case out for the 10th anniversary of the Olmstead Decision and my second was when we had the ADA Bus Tour out as a part of the ADA Amendments Act campaign. Lois was awesome! I had the privilege of picking Lois and her attendant up from the airport and touring them around Sacramento for 72 hours. I’ll never forget it! Lois spoke to the crowd about her journey to live independently and legislators who support the Olmstead decision came out of the Capitol Building to meet the Lois Curtis. Lois is a person of color and has an Intellectual/Developmental Disability. She’s a role model for many. Having her at DCAD was so much fun!

 

Lois Curis, an African American woman, on stage. She is wearing a white t-shirt and behind her is a large flag of the United States. An Asian American man is standing next to her with a microphone

2009 DCAD. Marty Omoto [left] and Lois Curis [right], one of the plaintiffs in the landmark Supreme Court case known as Olmstead v. L.C. and E.W. To learn more about Lois and the Olmstead decision: http://www.atlantalegalaid.org/impact.htm

When the ADA Bus came to Sacramento one of our community’s historians, Tom Olin, came with it. The bus drew thousands of people to the Capitol and the ADA Amendments Act got the attention it deserved. The tour included a history exhibit of the ADA. The community loved it!

A large bus that says, "The Road to Freedom"

The ADA Legacy Bus Tour: a traveling exhibit designed to raise awareness and build excitement about ADA25 – the 25th anniversary of the Americans with Disabilities Act (ADA)

Exhibit posters that read: The Road to Freedom with photos from the disability rights movement.

To learn more about the ADA Legacy Tour: http://www.adalegacy.com/ada25/ada-legacy-tour

If you live in California, be sure to check out this year’s Disability Capitol Action Day, May 20, 2015, 9-3 pm, Sacramento, California: https://disabilityactioncoalition.org/event/event-info.php

Screenshot from YouTube video clip with the video showing a slide that reads: Wong, A. (Video). “Presenting our Disability Rights History: ADA and Olmstead Stories.” 2015 National ADA Symposium, Session 7E, Atlanta, Georgia. May 12, 2015.

DVP Presentations on YouTube

Alice Wong, Project Coordinator and Founder of the Disability Visibility Project, recently gave two video presentations about the project at two events this year.

On March 6, 2015, Alice presented at the UCSF Continuing Medical Education 14th Annual Developmental Disabilities: An Update for Health Professionals. This video features an audio clip from a StoryCorps interview featuring Christina Mills and Eli Gelardin (at the 10:39 mark).

On May 12, Alice presented (with co-presenter Talley Wells of the I Am Olmstead Project and Atlanta Legal Aid) at the 2015 National ADA Symposium. This video features audio clips from three interviews Alice conducted with Janni Lehrer-Stein, Meriah Nichols, and Victor Pineda (at the 10:10 mark).

Click on the CC button on the lower right corner of each YouTube screen for captions.

 

Two Asian American women sitting side-by-side smiling at the camera. The woman on the right is wearing a black jacket and glasses. The woman on the right is wearing a white shirt and has long black hair.

DVP Interview: Jisun Lee and Alice Wong

Below are some excerpts of an interview with Jisun Lee and Alice Wong for the Disability Visibility Project. Their interview was recorded at StoryCorps San Francisco on January 29, 2015. These excerpts have been edited for space.

On blogging and discovering the Down syndrome community

Jisun: Well I’ve always liked writing and I’ve always…journaled on and off all through my life and that was, that’s always been just an important thing for me. Putting words to what I feel. Because sometimes…you know, stuff’s rolling around your head and somehow you don’t really know what it is until you actually try to organize it for somebody else. So then we had our third kid and in the beginning it was no different. We had him at home we home birthed all of our kids and he didn’t deal with like a very average kind of experience. Not to me obviously, but, you know, there was nothing, there was nothing unusual about the birth but…after he was a few weeks old, we started thinking that he had Down syndrome and so that was a really big turning point for us…We had told our midwife, and she, you know, clearly, she was like, it could or it couldn’t, and she didn’t give us a definitive opinion either way and she was like, “You know, you guys should get tested” but there was that period of limbo time and I was really obsessed with the internet at that point. And I just fell in this kind of, down this rabbit hole…one of the things that I found was blogs and other people’s experiences online and that like really saved me but also I notice that they were all white.

Alice: Yep.

Jisun: Yeah and I was like…”Well, this can’t be actually what it is,” you know, this can’t actually be reflective of what it is…I’m kind of embarrassed now thinking about…I would Google half Asian downs syndrome. Like, I just wanted to see the, the faces of somebody who looked like my son, you know? And there were none. I mean, I knew they were out there, but I couldn’t find them. So I felt like. I really wanted to say like look, you know, “It’s not just this one experience, you know?” And I thought, and I saw that in the kind of narrative that gets created, that the dominant narrative in the Down syndrome diagnosis story…It tends to be white, and you know fairly privileged. And I don’t mean to like say that this is a bad thing of those parents. I mean, you are what you are.

Alice: Right.

Jisun: But it tends to be that and it tends to come from that background and so, you know, it doesn’t, I, know it didn’t speak to me. And so I was, like, well, I just want other people to know that, like, that it’s not all the same. There are other people out there are these Intersections of, you now, race and class and disability, and all this stuff.

Alice: It’s actually why I was so excited to see your blog and to see that you’re an Asian American woman writing about disability.

On dominant narratives about disability and Down syndrome

Jisun: But in the Down’s syndrome world, a lot of conversations start with, “I didn’t get tested”…it’s like this badge you have to wear to be legit. Or you have to, you know, there’s always this preface where you have to say, you know, “I would have never considered abortion” because it’s this dirty, dirty thing, you know, and since, and I feel that too. It’s a really, it’s a really difficult topic for the community to know that there is this thing happening out there, where people, you know, find out that their children have Down syndrome and they say no to that.

Alice: Mm-hm.

Jisun: But I think before we had my son and before I got in the community, like it seemed really black and white to me…you know, I’ll backtrack…we had a home birth and part of home birth is really like not wanting to become overly medicalized…and part of it was this testing thing and I had never wanted to do the testing, because once I started looking into it, I was like, this is not even that accurate. Like, I’m gonna drive myself crazy, but I remember my midwife telling us…”You know, what you need to kind of think about where it’s going to lead you.” And once I realized like, that there were these kind of like at some point in the testing game, you might end up at a fork in the road, and you might need to make this choice, I was like, “I don’t want any part of that”…so that was a big thing to us. Like, for us saying no to prenatal testing was, was, it was an actual saying, like, we will take any baby we get…This is like a political choice.

It was in a lot of ways in, I mean, it was kind of an ignorant political choice, honestly. Cuz, I don’t know, what did I know about disability at that point? I didn’t, I really didn’t and I didn’t know much about the conditions that I was declining testing for, even, either, but…those were my values. I was like, I’m not going to have an abortion at 22 weeks. That’s, that’s just not something I could do, and so that was, that was something that meant to us…but then, you know, so like at that point then we fast forward like three kids and then we have this kid with a disability and then I started meeting all these parents who had tested, and still had their kids. And they had tested for really different reasons than I had ever considered.

On the choices and options faced by parents of kids with Down syndrome

Alice: Tell me about kinda your experience with health care providers and this was really helping professions. In terms of K’s development and his health needs and…all the things that he has to do purely because, of his diagnosis and how does that impact your family and the dynamics between, you know, his siblings and you?

Jisun: Well, I’ve tried to really minimize the impact. Cuz it felt like, you know, and I don’t know how it is with other disabilities, I feel like Down syndrome is a really interesting. It is in an interesting place because unless you have medical, a medical thing, you know, like clear I, I understand some of the medical stuff and heart stuff…You know, if, clearly you need to intervene at that point, if the heart’s not pumping but. K…didn’t need heart surgery. The biggest medical issue he has is that he takes thyroid meds once a day. That’s it and otherwise, like, he’s just, he’s just slower at reaching the same milestones and I found this, like, real philosophical issue with this idea that, that wasn’t enough… so most people you could get PT, OT, and something called in California, you get something called an IDS. It’s an Infant Development Specialist, so you could technically get those like once or maybe even twice a week. It depends on how much you push for that, but…that’s three appointments a week where somebody’s coming into your house and it’s really disruptive…I know they don’t mean it that way, I’m doing it in the house that’s supposed to be less disruptive and it is to some extent but, you know, one hour of your day to have somebody come in your house isn’t actually an hour. It’s the entire morning…You know, what are we, what are we doing here? Like, somebody comes in and plays with my kid for an hour.

Alice: Uh-huh.

Jisun: And yes, they have some expertise that I might not have, but do I need to do it this often? And I felt like there was this…intangible effect of having somebody come into your house, and constantly being brought back to that place where you have to evaluate your kid.

Alice: Yeah.

Jisun: Like I was constantly being pulled back into this place where I was like categorizing him…[You know, talking about, it was all, it was mostly about deficit. It was talking about what he couldn’t do and I was like, “So what does this mean?” Like, for me to come back, you know, so many times a week, time and time again, and talk about what he can’t do.

Alice: Medicalizing it.

Jisun: Right, and it’s something that I wasn’t entirely sold on if I could change it. I was like, if you could change it, that would be something to debate, but. It’s like I don’t think I can change him in this way.

Alice: And this is based on this developmental norm, right?

Jisun: That’s not, he’s not never gonna be that….then I had this point where…the girls are getting old enough…they’re gonna start to ask questions…and what am I gonna say to them? What kind of like narrative am I gonna create about why this person comes over and over again, to play with him in ways that are no different than I do? And I couldn’t think of anything…I couldn’t come up with a story that, that felt good to me. You know, what was I going to say?…I kept going down these different paths of trying to explain it and nothing came up and I was like you know, if I can’t justify this to my other kids. What am I going to say, you know, If, if I can’t justify it without stigmatizing one kid to another kid? I can’t do this.

Alice: I think what’s so, you know, refreshing is that you’re going against this tidal wave.

Jisun: It was hard…I felt a lot of guilt…and it wasn’t very popular.

Alice: And I think not many parents question those kinds of recommendations, because you know, you think, “Oh, I want to do every thing I can …where everything you can to maximize your child’s life.” And especially for kids with disability you would want them to do every single [intervention]. Go to every single class. Every single thing to make them as, [‘normal’ as possible].

Jisun: There’s nothing wrong with therapy and we still do some.

Alice: But on your own terms.

Jisun: Yeah, on my own terms, but I think it’s been valuable on my own terms and I feel like one of the things is that, is this idea that out there, that you can kind of just like stuff your kid full of information and everything will be okay, and I kind of feel like, you know, but, that’s not what I want for therapy… I can’t make him normal you know he has to decide where he’s gonna be on that spectrum and you know he has to, he has to embrace where he’s gonna be. Is he gonna you know try, does he wanna be in the middle? Does he want to be on the edge? You know that’s a choice that I feel like you have to give your kids…and I didn’t want to do that. I didn’t want to make his entire childhood about fitting trying to be in that middle.


Jisun Lee

From the About Me section of her blog, Kimchi Latkes:

My name is Jisun.  I’m Korean (the kimchi).  My job is to keep the kids alive and make sure the house doesn’t burn down (I have, unfortunately come very close to failing on the latter).  I have a background in social services and professional cooking (I know, what is wrong with me?).

I’m married to the Latke.  He works his butt off to keep us all clothed, is an amazing father, and is hands down the best person I’ve ever met in this world.  He likes building stuff, making the kids laugh so hard they pee their pants, and any kind of noodle dish.

We have three four kids (the spicy taters).   Mouse is 6 years old, going on 30.  She is turning into a real philosopher, and has the kindest heart in the family.   Chipmunk is almost 4 years old.  She is mostly concerned with copying her big sister, preventing any of her big sister’s goals from coming to fruition and misbehaving with such panache that it is hard to really be mad at her.   The Little Pirate is 2 years old.  He’s added some surprises to our lives.  Surprise pregnancy.  Surprise Down Syndrome.  Currently, he’s devoting himself fully to being a toddler.  And, if it weren’t enough to have one surprise baby, we figured, why not have another?  Sparrow just joined us, and she’s turning out to be all smiles and snuggles.  I’m trying to soak that in, because I know it won’t be long until all four are blaming me for all their issues and demanding I foot their therapy bills.  All the spicy taters have been born at home, on purpose.

We are just a regular old family, raising children all along nature’s continuum.

Blog: http://kimchilatkes.com

Email: kimchilatkes [at] gmail [dot] com

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

Twitter: @kimchilatkes

 

 

 

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: Charlie Carr, 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 June 20, 2010:

Charlie Carr of Boston, Massachusetts, speaks about acquiring his physical disability, living in an institution, and adopting a life of advocacy.

Charlie was partially paralyzed in a diving accident in his late teens; he went on to found the first Independent Living Center on the East Coast of the US and currently serves as Commissioner of the Massachusetts Rehabilitation Commission.

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

Two people smiling at the camera sitting side-by-side. On the left is an Asian woman wearing a green jacket and glasses. On the right is a white woman with brown hair with purple highlights and glasses.

DVP Interview: Meriah Nichols and Alice Wong

Below are some excerpts of an interview with Meriah Nichols and Alice Wong for the Disability Visibility Project. Their interview was recorded at StoryCorps San Francisco on November 1, 2014. These excerpts have been edited for space.

Becoming disabled at an early age

Meriah: Well, I’m originally from the Bay area, fifth or sixth generation something, you know, and my parents moved to Cloverdale to have a sheep ranch and to start this different way of living really to escape the Bay Area. And, when we were in Cloverdale, in the sheep ranch, we got into a really, really bad car accident. I went through the windshield of a car when I was four, out there. And that’s what gave me the brain injury, auditory processing disorder all of that. And my deafness was very gradual. And so, of course, it started off with a, with a slight hearing loss and just went more, more, more, more. Now, I’m profoundly deaf but, but it took a long time to get to where I am now.

Alice: Mm-hm.

Meriah: And that’s also why my speech is clear. Because I wasn’t born Deaf.
And then my parents converted to the Bahai faith shortly after the car accident. I think the car accident had a big it was a big push towards spirituality for my mom and, and she went that route. And then they decided they wanted to be missionaries and so they sold everything and we moved to the Fiji Islands.

And I was about six, seven years old, around there, when we moved to Fiji. And it was interesting because before we moved to Fiji, everything was about my scars. I had scars all over my face and you know, they were white, so they showed up vividly, and my hair was shaved and scars on my head and stuff.

And I had plastic surgery later but all this was just mass scar tissue before. So, everything revolved around my scars, and having thick glasses and so forth…And then we moved to [LAUGH] Fiji, and that was the last thing on anybody’s mind. It was, it was this, this, it, nothing mattered. Nothing like that mattered… It was my skin color that was the main issue.

On requesting for ASL interpreters at major events and in the workplace

Alice: I remember one of your blog posts you recently went to a National Down Syndrome Conference, and you told me how, in your blog post you wrote really, you know, eloquently about how exhausting it is to lip read and that it really takes a lot of focus And concentration, and you really can’t absorb multiple people talking, conversations, the way hearing people always are talking over each other, interjecting and you really kind of have to, you miss out part of it and at this conference you went to, that they provided you with interpreters throughout the entire time and, you know, that’s not always gonna happen in a lot of conferences. So, tell me about, I guess, that kind of process in terms of requesting those accommodations and how that really helped you as a conference participant who’s Deaf to really participate among other people.

Meriah: It’s just because I’ve made such a stink about other stuff with Down’s Syndrome that they knew I was coming and they were like let’s get the interpreters for Mariah, but that’s really it. I think for other things it can be definitely be an issue because of expense. It’s very expensive and people resist it and they say, “Oh well everyone lip reads. All Deaf people lip read. It will be fine for you.” It’s okay, but no. And there’s so many meetings that I’ve, I’ve wanted to have an interpreter for, and it hasn’t pulled through or it didn’t happen and it’s, and then it all, that baton always ends up being held by the Deaf person, like it’s our responsibility to be able to figure it out somehow, like.

Alice: And, it’s ironic because, you know, under the ADA, especially under, let’s say, you know, healthcare appointments and things like that, you know, people are required by law to provide interpreters. So, how is it for you in terms of we have this law and supposedly, you know, ensure access, and yet, for so many people it still doesn’t really work because there’s so many barriers in terms of ignorance, and just resistance.

Challenges in obtaining accommodations, ableist attitudes, and the impact on power dynamics between worker/employer

Meriah: So, what is it like when you attempt to, constant kinda pushing for interpreters? And well, I can’t even say I’ve been constant with it, because I feel guilty. I mean, I feel like I don’t wanna put people out of the way, you know? It’s taken me a long time to be more confident in this, you know? At UC Berkeley [previous employer]? You kidding? I never asked for that. It was just, it was, put, my boss way out of the line. It’d be, it’d be, you know, difficult for them. It’s just, when there was a large gathering or if it was a, you know, large function then yeah okay, but for staff meetings for things like that, I would never ask for that.

Alice: And what do you think are, you know, some of the underlying reasons that employees really hesitate to request for interpreters? …there’s a cost…there’s also this weird dynamic between you and the supervisor, but, you know, tell me a little more about-

Meriah: That look on their face.

Alice: Yeah.

Meriah: Yeah, the look on their face. That look of annoyance, of like, “God I can’t believe you’re doing this to me.” That look of being put out. That look that you’re, you’re, you’re being difficult. You know, “Why can’t you just do it, you know?”

I remember my first job that I finally got here in the Bay Area, after Japan was as Job Developer. And I needed this thing on the phone it was about 12 dollars…in order to hear on the phone, and it when I asked my boss for that, that, just that look on her face of being so put out, so annoyed with me, so, so irate. You know, I could just feel that, that my heart sink, you know, and know that I, I, I couldn’t ask for, for more.

Alice: And how did that make you feel as a person with a disability that’s trying to do her job?

Meriah: Made me feel like crying.

Alice: And I think this is where a lot of people don’t understand that it’s already so tough enough to find work…and to keep work.

Meriah: Mm-hm.

Alice: That on top of that. It does feel like the burden…falls on the individual, and that’s always our fault or our responsibility, our, our guilt…and, you know, that’s really, it should be a shared responsibility, and mostly that burden should be on supervisors and employers. So, do you think there could have been anything that could have been done to improve those kind of attitudes toward accommodations?

Meriah: Anything?

Alice: … do you think there’s could have been anything done to improve those employer attitudes?

Meriah: There’s so many things that can be done. I mean it goes it’s one of those chicken and the egg too. Or, or maybe even deeper than that. It’s just… so fundamental. It’s about a way of viewing people. It’s about seeing value in all people, and that all people are going to need to work and learn in unique ways.

And, and that’s just good. I mean, the thing that always frustrated me before I was a Human Resource manager, I worked as a teacher and if you’re a good teacher, you know all your kids are gonna learn in a different way…not every one learns in the same set way and then when you’re in, in Human Resource management, everybody works or they will perform better in slightly different ways. Some people will, will do a much better job if they can listen to music. Some people will do a much better job if they can look at a, a plant when they’re working or you know, it’s different little tweaks. And then you, you have disability in a picture and people think it’s this great big thing, when really it’s not. Most of the time it’s very simple. Most of the time…there are things that should be done for everybody. It’s just good, good human resource management. And that was frustrating for me because in that particular job I brought so much to the table, you know…but, I needed a device, to be able to hear on the phone. I mean.

Alice: Yeah.

Meriah: What is that? Like, when you weigh against what I was bringing to the table? It’s just…it kind of blows my mind.


Meriah Nichols blogs about Deaf culture, Down Syndrome, travel and disability. Her blog, A Little Moxie, covers ‘stories related to one travel-hungry deaf mother finding her way through parenting three children, one with Down syndrome.’

Screen shot from A Little Moxie blog: http://www.meriahnichols.com

Meriah’s A Little Moxie blog: http://www.meriahnichols.com

Facebook: https://www.facebook.com/meriah.nichols

Pinterest: http://www.pinterest.com/withmoxie/

Image of two people in a recording booth with microphones angled near their faces. On the left is a Latino man in a wheelchair using a nasal mask for respiratory support. On the right is an Asian woman in a wheelchair with glasses. They are in conversation with one another.

DVP Interview: Victor Pineda and Alice Wong

Below are some excerpts of an interview with Victor Pineda and Alice Wong for the Disability Visibility Project. Their interview was recorded at StoryCorps San Francisco on December 17, 2014.

These excerpts have been edited for space.

On disabling built environments

Alice: You have a Ph.D. in Public Affairs at UCLA and are an adjunct professor in the department of City and Regional Planning at UC Berkeley, so, you know, obviously you’ve studied a lot on disability studies and urban planning. How do you think built environments disable people, because I think sometimes people think – there’s a general perception that disability is at the individual level where it resides in the body, and as many people with disabilities understand, it’s fully an interactional process with institutions, policies, attitudes and the physical environment. So tell me about what you’ve learned in terms of how built environments can actually make a disabled person more disabled than they have to be?

Victor: So… I’m sitting here in front of you with a machine plugged in to my face. It’s a breathing machine that’s giving me deep amounts of room air. I’m sitting in a $65,000 wheelchair, custom designed to fit my 95-pound body, which is very, very thin because of a neuromuscular condition. So disability for me is very much about how this body operates in a particular space. So it’s not so much the fact that I have a small frame, that my muscles are weak, that, you know, I have to have the breathing machine batteries charged… Those aren’t the things that disable me. Those are just characteristics of my time and my place here, you know, in this city and this earth. What’s really disabling to me are the ways in which the cities that we build have a conception of what is the standard body, what is the standard levels of function. And in doing so, I become, like you, kind of an unstandardized citizen. We’re, in a sense, unique, and those unique qualities, that I view and have come to see as assets, as really innovative ways to see and think about the world – mainly having an impairment, having several impairments, belonging to the disability community – aren’t really seen, or have not historically been seen – as valued ways of being. So these cities have’t really been built for people like me.

On moving to the United States as a young child and experiences in school

Victor: I think that whatever you encounter something that is unknown, there is always curiosity. The curiosity however, can also lead to fear and to social exclusion. So I think that that exclusion can either be imposed by other people’s fear – I mean, I remember the 4th or the 5th grade, there was a rumor that came about: “if you hang out with Victor, you’ll catch what he has…”

Alice: Oh really? Wow…

Victor: “and you’ll also end up like him.” So, you have, from those early experiences of being sort of, you know, I really felt like I was this foreigner, I did not speak English, they pulled me out to ESL courses – English as a Second Language courses – I thought that that was kind of cool that someone was kind of dedicated to helping me out. Also, in getting assimilated. But, as you grow, you experience all kinds of things, like all other kids do, which is, puberty and then dating, and then, you know, will I go to prom? Should I ask somebody to go to prom? You know, I can’t walk, how am I going to dance? How am I going to show..you know, am I just going to be a laughing stock? So, a lot of these things come out of 2 levels. One is the social fear of people around you, and the other is sort of, your own internal kind of anxieties. Your internal sense of stigma, or you feel, like, you’re not like everybody else. But, I think that, in my case, I had a very strong family that was really, sort of.. my mother really wanted to support, push me towards being independent, and my grandmother was very supportive in terms of making sure I was protected.

Alice: You had the best of both worlds?

Victor: Yeah, the best of both worlds! And I think that the fact that I had two brothers, and they weren’t always with me either, cause my parents got divorced, so my brothers sometimes lived outside the U.S. with my father. So, I had different experiences that I had to adjust to. But in terms of making friends, I think really it’s about 2 people, and what they give and take from each other, what they share, and, there were a few friends, you know, during my years growing up, that were also shy and that were also eating their lunches in the library, because they nor I felt like the playground was the place for us, where we felt really protected or included, in a sense in high school.

Alice: Yeah, I mean, talk about physical environments that are disabling. You know, when I was young, in the 80’s, the playground often was full of gravel pits and, where all the swing sets were and the merry-go-rounds. And, I would always be on the asphalt watching, because my wheels would get stuck if I got in there, so, I was always watching, never participating, and, that to me is a clear example of how, especially young kids who really should have the right to play, how they’re really segregated from their non-disabled peers. And, yeah, to me, that was another experience too where somebody knocked me down during playground. I mean, I always thought recess was a really scary time…

Victor: Scary!

Alice: Because, kids are running…

Victor: Yeah!

Vision of an inclusive city/community

Victor: And, I think, what you’re really getting to is the fact that the word ‘inclusive,’ and to get back to how we started this conversation, which is basically, “What is an inclusive city?” “What does an inclusive city look like?” which, quite frankly, is the basis of my philanthropic or educational work, or my research, is really sort of, “What are the keys to an inclusive city?” “How do we unlock the ramp to the inclusive city?”

Alice: Yeah, what would you say are the main features of an ideal city that welcomes all types of bodies, all types of functioning, all types of disabilities?

Victor: I think it’s based on 3 key principles. One is, basically, equal access and equal opportunity. So you think about different things that cities have: libraries, schools, transportation systems, jobs and really putting into place kind of, the infrastructure and laws that protect people to equally access parts of the city and the benefits of the city. Two I think really gives kind of engaged, thriving communities that interact, because I think that’s where I think you’re really able to have social consciousness. It’s not only about teaching people or having awareness campaigns, but it’s really about people connecting and having their own cultures kind of intermingling. So, we have kind of, a lot of those experiences here in San Francisco, right, where you’ve got the Chinese communities and the Hispanic communities, and LGBT, and immigrant communities and tech communities, and people with disabilities are involved in all of those. So, I think an inclusive city has those kinds of thriving communities that interact. And the third, which I think is the most important, which is really an opportunity for constantly revisiting your history so that you have a real sense of where you come from. Whether it’s you as a person with a disability, whether it’s you as an immigrant, whether it’s you as an LGBT, because the city, the inclusive city can have ramps, it can have all these things, and it can have these communities that work together, but I think that the histories give more of a grounding to the continuity of your journey, and so, it makes the city and policies of these cities, future plans of these cities, correct past injustices.

Alice: Yeah, and I think part of that is making sure that, not only historians are the ones who tell the story and create the narrative, but that we ourselves create our own narratives and to bring light to these stories and we can’t wait for a historian to write about our story, but, through oral histories, through the Disability Visibility Project, and I think you know, talking to people like you, Victor, it’s really about building a base and giving that base to the future.


Victor Santiago Pineda, PhD is an Adjunct Professor in the Department of City and Regional Planning at the University of California at Berkeley, a Lecturer in the Comparative Disability Policy Program at American University’s School for International Service, and a Research Fellow at the World Institute on Disability. He has worked closely with the U.S. Department of the Treasury, World Bank, United Nations, UNESCO, UNICEF, and National Advisory Committees in developing programs and policies that include youth with disabilities as equal stakeholders in development. Victor was the recipient of a National Science Foundation (NSF) innovative research grant, a Fulbright-Hays Fellowship, the Thomas Jefferson Award, the Tom Clausen Fellowship for Business and Policy, and the AAPD Paul G. Hearne Leadership Award. Victor Santiago Pineda holds a Ph.D. from the Luskin School for Public Affairs at the University of California at Los Angeles and a Master’s in City and Regional Planning, a BA in Political Economy, and a BS in Business Administration from the University of California at Berkeley.

Twitter: @VictorPineda

Website: http://worldenabled.org

Twitter: @WorldEnabled