Women, Gender, and Disability: March 15, 2016Download Audio
Organizer’s Forum: Tuesday, March 15th – Topic: Women, Gender and the Disability Rights Movement
TUESDAY, March 15th, 1-2 pm Eastern time, 12-1 Central time, 11-12 Mountain time, 10-11 am Pacific time
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In honor of International Women’s Day in March, the call will explore gender in the disability rights movement. How do we talk about it – or not? What is it like to be a woman in the movement, or trans or genderqueer? What sexism do people experience? What are the experiences of women of color and LGBT women? What is it like to be a disabled parent in the movement?
- Rebecca Cokley
- Lydia Brown
- Fulani Thrasher
- Corbett O’Toole
- Sarah Triano
Rebecca Cokley is the Executive Director of the National Council on Disability, an independent agency charged with advising Congress and the White House on issues of national disability public policy. She joined NCD in 2013 after serving 4 years in the Obama Administration. Most recently, she worked at the Administration for Community Living at the U.S. Department of Health and Human Services. Cokley previously was the Director of Priority Placement for Public Engagement in the Presidential Personnel Office at the White House where she was responsible for outreach to diversity and minority organizations to recruit qualified individuals for roles in the Obama Administration. Prior to her time at the White House, Cokley was the Confidential Assistant to the Assistant Secretary for the Office of Special Education and Rehabilitative Services. She participated in the Education Policy Fellowship Program in 2006 and worked at the Institute for Educational Leadership for five years, building a number of tools and resources designed to empower and educate youth with disabilities and their adult allies. She has spent the last 15 years engaging in discussions tied to civil rights and equity while paying particular attention to the needs of young people with disabilities. In 2015 she was inducted into the inaugural class of the Susan M. Daniels Disability Mentoring Hall of Fame and was the recipient of the Frank Harkin Memorial Award by the National Council on Independent Living. Rebecca is the proud spouse of Patrick and mother of Jackson and Kaya. Preferred pronouns: she/her/hers.
Lydia X. Z. Brown (Autistic Hoya) is a gender/queer and transracially/transnationally adopted east asian autistic activist, writer, and speaker whose work has largely focused on violence against multiply-marginalized disabled people, especially institutionalization, incarceration, and policing. They have worked to advance transformative change through organizing in the streets, writing legislation, conducting anti-ableism workshops, testifying at regulatory and policy hearings, and disrupting institutional complacency everywhere from the academy to state agencies and the nonprofit-industrial complex. At present, Lydia is co-president of TASH New England, chairperson of the Massachusetts Developmental Disabilities Council, and an executive board member of the Autism Women’s Network. In collaboration with Elesia Ashkenazy and Morénike Giwa-Onaiwu, Lydia is the lead editor and visionary behind All the Weight of Our Dreams, a forthcoming anthology of writings and artwork by autistic people of color (release date April 2016). Previously, Lydia worked for the Autistic Self Advocacy Network’s national public policy team. Lydia has been honored by the White House, the Washington Peace Center, Pacific Standard, and Mic. Lydia’s work has been featured in various anthologies, including Criptiques, Torture in Healthcare Settings, and QDA: A Queer Disability Anthology, and periodicals including Tikkun, Disability Intersections, Black Girl Dangerous, hardboiled magazine, POOR Magazine, and the Washington Post. Preferred pronouns: they/them/theirs.
Fulani Thrasher is the Women and Girls Community Organizer at Access Living Metropolitan Chicago. Fulani is the lead organizer of the Empowered Fe Fes- a group of young women with disabilities who want to change their environment and advocate around issues affecting women and girls with disabilities. The goals of the group are to build disability pride, self-confidence, and leadership skills by using art, peer support, and hands-on advocacy trainings and workshops. Fulani obtained her Sociology degree at Beloit College, which sparked her passion for social justice. Fulani believes that disability is important to every community and intersectionality is key to discussing disability. She would like to see more allies standing by the disability community in the fight for disability justice.
Corbett Joan O’Toole has been organizing in disabled women’s communities since 1973. She was part of the Berkeley Disabled Women’s Coalition, ran a national disabled women’s project in the early 1980s, brought groups of disabled women to the 1992 International Women’s Congress in San Jose, Costa Rica, as well as to the 1995 United Nations Forum on Women in Beijing, China. She’s written extensively on women and disability issues and recently published her book, Fading Scars: My Queer Disability History, which is a finalist for the 2016 Lambda Literary Award in LGBT Nonfiction.
Sarah Triano is a lover, a mother, and a lifelong student of transformative social justice, health equity, and self-care. By day, she is the Diversity & Disability Manager for California Health & Wellness, and by night she is a small business owner who enjoys tickle wars with her family. Preferred pronouns: she/her/hers.
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Looking forward to talking with you all!
Jessica Lehman and Diane Coleman
Co-Chairs, National Organizing Workgroup
Date: 3/15/16 Jessica organizers forum
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>> Hi we’re just giving people a few minutes to get on.
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>> Do we have any [inaudible].
>> Diane Coleman.
>> Laura with the coalition of Texan’s with disabilities.
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>> Rebecca Cokley.
>> Hi Rebecca. Do we have any speakers on yet.
>> This is Sarah, I’m on.
>> Hi Sarah! .
>> We’ll give people just another minute or two to join. Okay everybody it is a minute after the hour and because we have so much to cover today I’m going to go ahead and get started. Can I ask we’re hearing some background noise if people can hit star 6 can mute yourselves. I take that back I’m going to mute everyone. Hold on a second. Okay. So welcome everyone to the organizers forum my name is Jessica layman and I am executive of director of San Francisco senior disability action and I cochair with Diane Coleman. Diane do you want to hit star 6 and introduce yourself.
>> Hi, I’m Jessica Coleman and I’m a member of the steering committee of the national disability leadership alliance on which we call our support. So glad to be here today and I’ll be on the CART.
>> Thank you Diane. For folks that don’t know we have an organizers forum call every month and the idea is to expand on support community organizing within the disability rights movement and disability communities more broadly so we do a mix of issue based calls like last month we talked about some upcoming mental health issues and then we kind of mix the issues in with some of the bigger strategy or sustainability questions, who are we working with, what’s going on in the movement and in our community that we need to be thinking about and talking about. The call is captioned as Diane mentioned we have CART so you can log on and type questions or comments and when we get to the open dialogue part of the call Diane will read those out. So I mentioned we have a different topic every month and we recognize that an hour is really not enough to cover a lot of these topics so we have a Yahoo group it’s organizers forum at Yahoo.com. There’s not a lot of e mail but share some thoughts and comments about the topic of the call as well as on our Facebook page organizers forum two separate words and so we ask people who are on the call today to please go on the list serve or Facebook and share a thought that you had during the call maybe something a speaker said you want to share with other people who couldn’t make it on the call or a question that you might have or anything. So that’s one way we can continue the conversation. Also we are fortunate to have the organizers forum on the NDLA website, www.disabilityleadership.org so you can there for a recording and the transcript of call if you want to share those with other people afterwards please do. So I want to remind everyone to speak slowly and clearly and say your name before you speak. We have people muted now and I’ll tell you how to unmute when you need to speak. Let’s see what else am I missing so we’re not going to do introductions today because we have five amazing speakers and I want to make sure they have time to talk. Hopefully when you got the notice about the call over e mail you saw there is a link in there where you can go ahead and register for the call so please be sure to do that as much information as you’re comfortable with but we want to have some idea of how many people and who was on the call and where are people from. I think that covers our housekeeping so we are ready to get started. So our topic today of course is women gender and the disability rights movement and this is really respect because March is women’s history month and we had International Women’s Day and we thought it would be really good to explore gender in the disability rights movement how do we talk about it or do we not talk about it, what is it like to be a woman in the movement or to be transgender or gender queer what kind of sexism is there that we should address what are the experiences of women of color or LGBT, what is it like to be a disabled parent in the movement we’ll cover some of these things and maybe more today really just kind of exploring these issues. So our five speakers for today are Rebecca Cokley, Lydia Brown, Fulani Thrasher, Corbett O’Toole, and Sarah Triano. We will go in that order and I will introduce you one at a time. For our speakers you can hit star 6 to be able to speak. We’re going to start with Rebecca Cokley who is the executive director of the national council on disability which is an independent agency charged with advising Congress and the White House on issues of national disability public policy. And she joined NCD in 2013 after serving four years in the Obama administration. She worked at the administration for community living and previously as the director of priority placement for public engagement in the presidential personnel office at the White House. Before that she worked at the office of special education and rehabilitative services. She was at the institute for educational leadership working on tools and resources to empower and educate youth with disabilities and adult allies. She has spent the last 15 years engaging in discussions with civil rights and equity while paying particular needs with attention to people with needs and disabilities. I’m trying to summarize her bio here and I don’t want to leave this out. Rebecca is the proud spouse of Patrick and mother of Jackson and Kaya and her preferred pronouns are she, her and hers. Go ahead, Rebecca. We can’t hear you yet so hit star 6. Are you there? Sorry everybody hold on one second. I’m going to have to unmute everyone so we can get Rebecca, hold on one second. You have reached the disability policy organization we’re sorry we’re not able to answer your phone calling right now so please leave your name and number and we will get back to you as soon as possible.
>> Jessica, I’m here, can you hear me?
>> I’m going to have to but we’re hearing somebody else’s voice mail.
>> Did you try hitting star 6 did it not work?
>> It didn’t work.
>> That’s strange.
>> Let me try it again.
>> Can people hear okay? Can we go ahead?
>>CART Provider: No.
>> We’ll try it like this unless it gets loud.
>> I’m fine doing with that.
>> Go for it. Sorry.
>> I am Rebecca Cokley. I am the executive director on council for disability where I’ve been for the last three years and NCD is a federal agency that advises congress and the White House on all issues impacting Americans with disabilities we’re small but extremely nimble staff with 12 people and budget of 2.3 million dollars. I’m the first woman with a disability in the executive director roles. Being that is something I’m kind of familiar with. I was the first woman with an apparent disability working in the White House in the beginning of the first term of the Obama administration. But I’ve also really had the fortune of growing up in a family of where both parents had the same disability I did. Both my mom and day had chondrodysplasia and like with my children. Frankly since I’ve become a mom I’ve thought what that meant in terms of my confidence sort of the tone I bring to my work. I think having a mom who was very secure in herself, having a mom who was very driven, having a mom who when my dad left us because my mom chose to go back to school, that was a very significant moment in my life instead of watching my mom crumble, saying it’s the right thing to do for the both of us meaning her and I. Throughout my life I’ve had the fortune of growing up with strong women with disabilities. I’ve got to give a shout out to Corbett who I’ve known for 30 years now if not longer who was one of the first non LP moms with a disability I saw regularly growing up and I think that was very empowering and engaging in different types of leadership was really critical, you know. As I I think serving as an ED, searching as an ED in Washington, D.C. can be very lonely and frustrating especially as one of the only women.
>> Your message will be deleted unless you press 3 to save it to listen to the message press 1.
>> On that note sorry Rebecca let’s try muting and we’re going to hope you can get through this.
>> Can you hear me?
>> Yes, yea.
>> Yea. So I think when we think about what women with disabilities need in leadership roles it’s really no different than women without disabilities but there are important components that are specific to the disability community. For me one of the things that was really important as I transitioned into this role and actually pretty much every role I’ve had in this administration was having not only peer mentors whose brains I could poke to reach out to if I had any questions but also I don’t know if the adult mentors but more senior mentors. Mentors who had been in senior executive roles and I really struggled finding women with apparent disabilities in a lot of those sort of senior executive roles here in Washington. And I actually found myself growing really frustrated early on in my tenure because I was struggling finding folks like that. And one of the things that I realized was that I might not be able to find the people I was looking for specifically in the disability community but I could find them through work that I was doing in the broader social justice space. And so I came to develop really solid mentoring relationships with Maura and Sharon will you tell man Hicks who runs the national black coalition for justice. I think it’s critical for anybody from any marginalized in an executive leadership program to find mentors and people that you can bounce ideas off of, to find people who you can get feedback on how to manage a board or feedback on how to deal with a situation where you are the only woman in the room and you have to speak up on something and you’re fighting against the good old boys network in whatever setting you might be encountering them. And you know I just think that this is a topic that we have an opportunity, we have a responsibility for current women leaders and those coming up behind us to create a community that’s truly reflective of what our community is. And I think that’s intrinsically one of our core values and should be front and center as we make decisions and as we look at the leadership of our organizations going forward Jess is there anything else you would like me to touch on.
>> I think that’s a wonderful start thank you so much Rebecca. We will have a lot more time for discussion that I’m looking forward to.
>> Next I would like to introduce Lydia XZ Brown who is gender/queer, transracially/transnationally adopted east Asian autistic activist writer and speaker whose work as largely focused on violence against disabled people especially institutionalization and policing. They have work worked through organizing in the streets writing legislation conducting antiableism workshops testifying at regulatory and policy hearings and disrupting institutional com play sense at this from the academy and state agency and industrial complex. Lydia is copresident of TASH New England chair of American of disabilities council and executive board member of the autism women network. Lydia is the lead editor of All the Weight of our Dreams, a forthcoming analogy by autistic people of color which is coming out next month. Previously Lydia worked for the self advocacy network public policy team and there is a lot of honors but you hopefully have seen on line Lydia’s preferred pronounce are they, them and there’s. Go ahead Lydia. I want to remind you to hit star 6 to unmute yourself.
>>Lydia: Can people hear me.
>> Yes thank you.
>>Lydia: Yes usually conference call technology hates me with a burning passion and it doesn’t work. I want to take some time to talk a little bit about women and gender non binary leaders in the autistic movement. There is a lot of interesting discussion around who is represented in autistic organizations, in autistic spaces on line and cultural events that happen in person. In particular around gender and sexual, a very large number of autistic activists who were write widely blogs, participate in conferences autistic activists who organize campaigns identify as either woman or as gender queer or non binary. It’s really fascinating to me to have entered the autistic community I did which would have been around 2009 toward the end of it to see that while the majority of portrayals of autistic people in popular culture of white men while they were founded by white men the most vocal activists by and large did not belong to that constituency. Although the movement has struggled for a very long time with racial representation in that as a person of color I very frequently wouldn’t see other autistic people of color, just a handful sometimes I did see a huge amount of leadership and a huge amount of conversation among women and among gender nonconforming people. And that was fantastic because virtually every other space I’ve been in is so male dominated all men cisgender men or trans men it was certainly a different experience. I think that the role of women and gender queer folks in the autistic community has played a huge part in conversations around gender, gender configuration, around gender roles, around gender expectations and gender disparities among different groups of autistic people but just as much it’s created a space for all sorts of conversations around labor and around sexuality, sexual identity, around intimacy around kin ship and around family that I don’t think would necessarily have looked the same if all of the pioneers of the autistic community or majority were men. I think there’s a striking disparity between the kind of history that I learned in 101 spaces where the time line of disability rights history that was given for me as a 101 was mostly a list of names of white men. People do did fantastic work, Justin dart, I’m blanking on a number of names right now which is not fun but it was this feeling that although I am aware from my own positionality that likely those narratives are not including the stories of the women leaders in the disabled movement of the gender queer leaders in the disabled movement of the people of color in the disabled movement but those were the stories presented to me that was not the case when I became involved with the autistic community. I think what I see for the next few years honestly from my vantage point is the growth of organizations like the autism woman’s network I am very happy to have the privilege of working with that specifically aim to advance advocacy and create space for autistic people for support, for campaigning and for autistic culture that center the experiences of those that are marginalized and that’s not just people who identify as woman or gender nonconforming also people of color, also people who are autistic and have multiple other disabilities and I think that kind of space is incredibly important because it tries to acknowledge our complexities that the experiences of people like me may not be identical to most of the people that I work with and that’s fine but it’s hard for me to separate how I navigate my gender in the world or how I navigate my race in the world from how I navigate my disability in the world. And I think that the leadership of those of us who sit at those intersections particularly in the autistic community where I come from has gone a long way toward laying the ground work for a future that’s actually more inclusive and more than just in name only if that makes any sense.
>> Thank you so much Lydia. That was.
>>Lydia: I’m not hearing you very clearly.
>> That’s strange I think I’m just going to have to speak up can you hear me okay.
>>Lydia: If I listen very closely.
>> I’m sorry everyone I don’t know why. Apparently conference call difficulties. Well this is Jessica, huge thank you to Lydia for those really visionary comments I think. I believe we have two speakers who haven’t been able to get on the call Fulani Thrasher or Corbett O’Toole. If either of you is there can you hit star 6 to unmute yourself and let me know.
>> This is Corbett.
>> Oh, good Corbett is on.
>> High this is Fulani.
>> Can you hear me okay.
>> So next I would like to introduce Fulani Thrasher who is the women and girls community organizer at access living metropolitan Chicago. She is the of the Empowered Fes Fe whom to change their environment and advocate around issues with women and disabilities. The goal are to build disability pride self confidence and leadership skills by using art peer support and hands on advocacy training. She believes disability is important to every community and intersectionality is key to discussing disability. She would like to see more allies standing by disability community in the fight for disability justice go ahead.
>> Fulani: Hi, welcome everyone. I got the time zone wrong but I’m really excited to talk about women with disabilities and intersectionality and also International Women’s Day. So yeah, I have been at access living for about three years now and it’s been wonderful to work with young black women with disabilities. And myself, I identify as gender queer and I’m also a black person and I also identify as having multiple mental health disabilities. And I’m also from a low income background. I just feel like that’s important to why I’m sort of doing this work but on the other hand I feel like I’m also privileged because I wasn’t diagnosed at a younger age and I also don’t rely on state or government assistant programs. But do want to talk a little by the about who the Fes Fe are and what we’re working on. The empower Fes Fe have been around for 13 or 14 years and they are mostly low income poor black women with disabilities. Some have multiple disabilities and most of them are from the west side of Chicago they are very complex individuals, they are funny and intelligent and survivalists but also a carefree and a lot have multiple identities beside being black and woman and also have a disability. Most of them are survivors of domestic and sexual abuse and have experienced multiple forms of trauma. And most of them are ages 20 to 27 and the Fe Fes I feel like when we’re discussing disability I think that intersectionality is definitely posh to discussing disability because I don’t think that every person with a disability experiences the same barriers and you know I think that the Fefes also don’t identify with the white feminist movement or sometimes the disability rights movement. Because sometimes it can they don’t really their identities are reflected in the disability rights movement so I think that it’s important that they have the opportunity to create their own movement and create their own way of doing like disability rights that reflects them. So right now we are working on the group is around 15 young women and they for awhile they were working on access to reproductive healthcare in Chicago or the lack of reproductive healthcare for women with disabilities and they created a reproductive health guide for women with disabilities and healthcare providers that sort of is a tool and a resource for not only women with disabilities but healthcare providers. And but we sort of have transitioned into a new campaign where we are identifying the barriers that women with disabilities face in trying to get employment and retain employment because people with disabilities only make up 20% of the work force. So that means that 80% of people with disability are unemployed which is a huge issue. And in Illinois it’s bad as well, 2 out of 3 people with disabilities are unemployed. So the Fe Fes myself and we had Emerson national fellow who was working with us we interviewed about 20 women with disabilities and 12 stakeholders within government education economic development and housing, and we interviewed them to figure out sort of what is the support structure that women with disabilities have to navigate through to get employment. So we, after sort of doing these interviews we are in the process of creating a documentary that reflects sort of reflects the gaps within this support structure that women with disabilities have to navigate through. And some of those gaps is that women with disabilities have to rely heavily on social services and state and government services to live basically. From housing to Social Security, all of these sort of programs are needed but it doesn’t build economic power for people with disabilities and the women that we interviewed really gave us some ideas about what they envision instead of having to rely on the state. So that is where we are at right now and we plan, we’re in the editing process of creating this film and we hope to screen the film at access living but doing some screenings with the stakeholders that we spoke to and really sort of getting the word out that like women with disabilities are also, are also struggling with unemployment. Do I have more time or less time?
>> Jessica: If you’re at a stopping place that would be great and we can talk more in the open dialogue.
>> Jessica: I appreciate how you started with your different identities and forms of privilege and you raised a lot of questions and food for discussion so thank you. Next I’d like to introduce Corbett Joan O’Toole who has been organizing in disabled women’s communities since 1973. She was part of the Berkley disabled women’s coalition, ran a national disabled women’s project in the early 1980s, she brought groups of disabled women to the 1992 international women’s congress in San Jose Costa Rica and to the 1995 United Nations forum op women in Beijing China. She has written extensively on women and disability issues and recently published her own book called fading scars my queer disability history which is a final list not 2016 Lambda literary award in LGBT nonfiction. If you haven’t read it you need to go pick it up.
>>Corbett: Thanks for the introduction and I’m really glad to be on this call because so many of the women that are speaking with today and really appreciate the work they do [sirens] the introduction basically helps you know that I’m old so I’m 64 years old, I’m a white woman I use a wheelchair I’ve been physically disabled all my life and I’ve been pretty public about that. I’ve also a pretty significant psychiatric disability which I’ve been in the closet about in disability work. And as Jessica said I go back to Berkley in the early 1970s when a lot of the contemporary disability rights movement was beginning to happen and I want to frame what I’m going to say with a couple of contexts. One is that my case and these are just my opinions my take is that we’ve done a really good job at what a white guy ma wheelchair might need so access, a lot of basic infrastructure issues that are not particularly specifically gender have I think been major discusses for our movement. What we have not done well I think from the very beginning is not anybody but a white guy in a wheelchair it was nice if we had the time and money we might do something so for instance in the 70s we would get calls like this, so a disabled woman would call and say my husband has beaten me and I called the hot line and they said I needed to go to this shelter and I got there and I’m blind and they said they wouldn’t take me because they didn’t think I could do the chores. And so they told me to call you and I’m like well I’m in an independent living side 9:00 to 5:00 Monday through Friday. We don’t domestic violence services and that issue has not as far as I’m concerned, those kinds of issues, basic access to women’s specific services, whether it’s women’s services, queer services, trans services we have not done a good job at making those bridges we’ve been very frustrated and that’s an important thing to try to point out. The solution I see that works best is when all organizations decide to take a certain percentage of every dollar that comes in I’ve seen a number at 1% and create a centralized access from that whoever in the agency needs that money for whatever, that there’s money to have interpreters or Braille or whatever is needed or put a ramp on the front door or modify the bathrooms and no one has to take the whole bit for that. I want to throw that out. What I saw in the 70s is white disabled women primarily disabled and blind women were organizing in lots of pockets across the U.S. By the end of the 1970s from a disability rights movement had some clout there was actually some money for disabled women’s work and good work happening on reproduce rights, domestic violence all over the United States again primarily by white women. There was also work starting in Canada the disabled women’s network of can did and also the disabled women’s network of Australia and back to the states by the early 1980s that was crescendo of funds things got easier and conferences the one memorable to me is the conference in 1982 that Barbara waxman organized with the California women’s law center and she and I were cofacilitating a session and we were talking about independence and moving out from their parents of homes and the women of color said wait you are talking about a white model of independence and you’re not actually including all of us in this room in what you’re saying and that was the first time I as a white woman really heard it had been said to me many times before that was the time I felt like I heard that but I mentioned that because I feel like the access to jobs, to power structure to publications that disabled communities, disabled rights folks had access to was not open to disabled women of color or pretty much any people of color until as far as I’m concerned social media which is when things really started to change. I also want to say in addition to what Jessica had mentioned a couple of key points exchanged to me were the fact that the international disabled women’s community decided to identify the 1995 United Nations conference on women in Beijing that was the 4th united conference on women and it was held in Beijing and we had been excluded from all three previous ones and even though the United States delegation told us they would not help us and not provide any accessibility, we made an international decision to go and there were like 300 disabled women from around the world and we held an international conference in Beijing and then Kathy Martinez and Barbara Duncan organized one in Washington, D.C. in 97 and there were like 600 disabled women there speaking 81 languages. In 2002 we finally had enough connections that we were able to organize a queer disability conference so and that was a pivotal moment in history. A lot of people you think of queer disability work attended that class and came out of that work. I would say that the only thing I want to say is I feel like that the connections between disabled women and nondisabled women’s communities and work has not been very strong. One of the misses as far as I’m concerned is we have an 80% unemployment rate that’s the bad news. The good news is we have a lot of people who could be volunteering in organizations and we don’t seem to be able to bridge that gap with organizations that need the work and the work that we can provide. I’m really hoping that will change and I think what I’ve seen is that through social media I’ve seen many more disabled women having space taking over defining the issues and to me that’s where other than Rebecca’s organization quite frankly that’s where I think the real work is happening. Thank you.
>> Jessica: Corbett teased me for asking her to boil down 40 years in history into 10 minutes and we appreciate your points. Last but not least we have Sarah electric Anna who is a lover a mother and a lifelong student of transformative social justice health equity and self care. By day she is the diversity and disability manager for California health and welcome and by night she is a small business owner who enjoys tickle wars with her family. Her preferred pronouns are she, her and hers.
>>Sarah: I’m just going to get right to it. Every movement for change has different frames of reference that shape the kind and type of advocacy we do. Early on I was introduced to the pitch fork approach to advocacy which is predominant within the disability rights movement there’s five prongs of advocacy they are essential and must be coordinated to achieve change. Political advocacy, systems administration advocacy, media education and legal advocacy. In my 24 years I can hardly believe I say that on a systems level I have seen this pitch fork approach work time and time again but on a more personal level in the last four years I think I’ve really come to realize that there are some missing prongs in this pitch fork that include love and self care that is absolutely essential have been essential for my self preservation as a cisgender woman and mother in the movement. So for me personally kind of underlying this pitch fork approach was a very confrontational way of being where much of the advocacy I was doing was really coming from a place of anger. You know it was righteous anger but it was anger all the same. The ends really justified the means if I had to leave a few dead bodies along the way so be it. The movement was my life. I had no boundaries, self sacrifice was actively rewarded within the movement. I was critical of everyone and everything around me, everything I did was really reactionary and I got very little to no sleep. And then in 2008 I became a world. For years I tried to wield that pitch fork in 2011 when my second child was born and I had a complete and total mental break down and tried to kill myself. And during my recovery thanks to the lessons and teachings of three women who I have to raise up Oshika Dart, Grace Lee Boggs and Naomi Ortiz this became to me this pitch fork approach that we have it’s not a really sustainable model for me as a mother and that instead of the pitch fork I really had to use more of a rake to achieve social change. You know Justin dart does get most of the credit it’s Oshika Dart who wrote much of the content and it was her who told me to try to begin advocating from a place of love instead of anger. And it was Grace Lee Boggs who taught me I need to love my perceived opponents to see the possibility for change and it was Naomi Ortiz who taught me that self care is not a sign of failure but rather a political act of self preservation that was necessary for my own survival. So at that time I made the really hard choice to leave the organized disability rights movement and I took a job with boundaries you know my first job was with the state of California. And now I work for a Medicaid managed care plan imagine that. I had to work for a state bureaucracy and for the evil empire to find balance. And I think at that says a lot. But I’m at a place now in my life where who I am is not based on what I do hence the reason for my funky biography and the work that I’m doing within the system is aimed at fundamental transformation of that medical model literally from within the medical model. You know it’s based on loving my perceived opponents and developing with them a positive vision for their future. Naomi again I keep talking about her I feel like she should be on this call in stead of me but she said you know we’re really good at projecting what we’re against in the disability rights movement but not so good at saying what we’re for. And she’s so right on about that. So instead of protesting the rural health clinics in California who aren’t accommodating folks who are deaf and hard of hearing for dropping appointments I am working with them to install equipment. Instead of suing the health plan for inadequate access to specialists I’m helping them set up tele health people on the border of Mexico can get immediate access to a neurosurgeon since the only one they have is 80 years old and retiring. I am raking up the dead bodies I left behind in my prior life and trying to approach them from a place of love and partnership and some folks including women leaders in our movement have said that I’ve sold out well you know if selling out means self preservation through self care then so be it I’m a freaking sell out but I’m a sell out who is alive. No movement is worth my life or my children and no movement should expect that of their leaders. We need the pitch forks the pitch forks are important but we also need rakes in our movement and we need to acknowledge that there is a place for positive life affirming change based on love and most importantly self care.
>> Jessica: Thank you Sarah that was beautiful and powerful a huge thank you to the incredible speakers on this call we are so lucky to have you on this call and brining in some of the many other people who couldn’t be on this call who have so much to contribute on the topic. We are going to open it up to dialogue, we have about 15 minutes. I actually want to start with one question for our speakers which is how do we lay the ground work to change our movement, to have a more inclusive movement, to have space, I remember Fulani was talking about young women needing to be able to define the movement and community in a way that works for them and fits them and how do we make space for all of that.
>>Rebecca: Can I weigh in? I think Sarah and I came up through the movement sort of like the national level of the movement in the late 90s early 00 because there was an intentional effort by the established leaders of our community at the time obviously Judy Heuman, Curtis Richards et cetera to see an intentional effort around cultivating the next leaders of those with disabilities. It was seriously intentional I would watch Curtis and Judy stop with a person with disability and say who are you where do you go to school do you know about the movement what are your interests and it was that level of intention. And it was really powerful and we saw that last for a number of years. I think we have to take the same level of intention and dedicate it towards creating more inclusive movement that we all know we need to have. I think we need to I was talking to some colleagues and we’ve been in thinking about how we’ve built, how we how I as a white sis middle class woman with an apparent disability help support and cultivate leaders of color with disabilities here in DC and around the country and it really does take that same level of intentionality it means being when you’re in a room in the room that Corbett described a room full of white dudes in wheelchairs standing up and saying where are the leaders of color I’m not willing to be part of this discussion if it’s not inclusive and that’s a stance I’ve taken before there have been many meetings because the only perch of color was a keynote speaker there for five minutes and left or an intern. And Sarah leading with a place of love following up do you not know leaders of color with disabilities. Here are folks that work in that space. Here are folks that need to be at the table. We always say if you’re not at the table you’re on the menu. We need to think about a what that means for our own efforts around being an inclusive community.
>> I want to take that next this is Lydia. And I want to follow up on some of Sarah’s comments when she was speaking just a couple of minutes ago and say that if we care about building a more inclusive movement either looking right now at the current landscape of the movement 5, 10, 20 years down the road we have to be centering and like centering explicit and open discussions about how activism slowly kills us and that’s not just in organizing in the community that’s not just grass roots work or radical work that’s also people who are doing policy work, people who are doing the legal advocacy. No matter where you are we are constantly killing ourselves we don’t talk about how it’s not just the expectation of unrealistic amounts of labor which is particularly ableist when we’re talking about a disability movement but also the toxicity of our movements when we’re so obsessed with purity politician who are more Holly year, more progressive than thou. Who is the person who can say the right words string them together in the correct sentences and the person who use the wrong terminology or who hasn’t yet been given an opportunity to be educated in maybe the same type of language or discourse as somebody else. And there is so much classism and ageism and ableism wrapped up in these ways we’re constantly trying to tear each other down and measure ourselves can I sound better, can I like I have the best analysis out of everybody in the room as opposed to how can we talk about lifting up everybody and recognizing that we’re all going to fail, we’re all going to mess up we’re all going to have time because we need to be taking breaks and that doesn’t make us less of an activist or less of an advocate it doesn’t mean we’re somehow not committed or turning our back on somebody or that because we screwed up once or we didn’t follow through on something some other time that we can’t be relied upon it just means that we’re not actually practicing anything that we’re preaching about inclusion about interdependence about peer mentor ship we’re not actually practicing it when we’re concerned about tearing each other down and doing so like for our own self adulation or gratification and it just bothers me like the other folks having doing this work a lot longer than me. I’ve been doing this work for about 7 years and several times during those 7 years I have felt completely burned out thought about leaving thought in my head in cataloged ways I could leave the movement because I have been burned and hurt and attacked by people that I thought I was supposed to be able to work with, people that I thought shared my value, shared my commitment and would be willing to work collaboratively with me as in sometimes I might take on more labor sometimes they might take on more labor sometimes I might know more about something or they might. I’ve been burned so many times overwhelmed tomorrow times given so many expectations it doesn’t help to be so many levels of marginalized. I experience a number of layers of privilege and I experience a number of layers of oppression and I hate the feeling where I experience a certain layer of oppression I am constantly being tokenized we need to make sure the roster had not all white people so they invited Lydia and that’s frustrating, it’s tiring and exhausting and 7 years which is a lot less than most of the time most of you all have spent in this movement has drained me such that I have thought about how can I get out of here not just to escape that but escaped what I am convinced the retaliation the acquisitions I am lazy that I’m giving up the accusations that I am turning my back on something so when I have taken breaks I have taken breaks that really weren’t taking breaks and I think that if we’re trying to practice those values of actually practicing interdependence actually practicing inclusion, peer mentoring and support then we have to be open about this because acting like you find disability community and suddenly the world will be perfect and rainbows because you found your people ignores and erases the pain that comes from doing activism. It ignores and erases the harm that’s reflected by the ableist expectations that we place on people we call leaders and I think that recognizing the multiple ways in which those expectations reinforce all types of oppression from racism to classism ageism and ableism we have to recognize that if we want to be able to do anything about it.
>> Jessica: Thank you so much for those comments. We can probably take one or two questions from people and we will be able to continue on list serve and Facebook.
>> This is Colleen Starcloff in St. Louis and I guess I’m one of the old ones who is listening in. I’ve been involved in disability rights for over 40 years now and I might be guilty of the white guys in wheelchairs sufficient because when we first started this movement a great number of the folks who were involved were white guys in wheelchairs but I can just tell you guys that from the very beginning we were trying to involve as many people as possible and gradually over time more people of color, people of gender difference, people American Indians began to join U. And people with various disabilities, it wasn’t all about people in wheelchairs but I’m glad to hear this conversation particularly I want to talk about Sarah’s impassioned statement about not leaving you haven’t done that what you’re doing embodies what this movement is about. It is about inclusive, it is about including people with difficulties, it’s about ending segregation and discrimination based on disability and trying to get nondisabled people to understand that we’re people to and we can fully contribute and I just I’m not going to go on and on so you can get another statement in I’m glad to hear you guys speaking out about that. We’ve come a long way there’s always more we can do and it takes people with passion and commitment and leadership who also love themselves to help other people understand that we matter, we’re important and that we can contribute. And I think employment is the next big step for us we’ve got to get our people out of poverty I’m going to shut up but thanks for your leadership, guys.
>> Jessica: Thank you Colleen we appreciate hearing from you.
>> This is Stephanie Woodward can you all hear me?
>> So I have a question about empowering people specifically people who are women transgendered and institutions when they’re already trying to face so much and I feel like we’re the privileged few at this point when we’re able ton on a conference call when there’s so many that didn’t have this opportunity especially with a lot more women going back into institutions we’re struggling with the new Department of Labor people are losing their tenant services a woman who is deathly afraid of going into a institution because she was raped there is looking at going back so when facing crises like this how do we empower our people to keep going because I really do feel like that’s the most marginalized part of our community are the people that can’t even get on a call because they’re institutionalized or at risk.
>> Same exact type of place.
>> I’m sorry I missed that.
>> Either in institutions like nursing homes, psych wards residential institutions or prison because those are places of confinement and incarceration.
>> This is Fulani can I respond.
>>Fulani: I think it’s definitely a privilege to just be talking on this conference call when people are definitely institutionalized and there is a higher rate of black and brown people being institutionalized in prisons psych wards and nursing homes juvenile detention centers and if we really want to include people of color and if we really care about black people and people of color, then we must up lift them and we must support policies that frees them. And myself and my coworkers can dis Coleman who works with youth with color we gave a presentation at nickel about black lives matter and making sure that organizations that work with people with disabilities are antiracist in supporting policies that don’t police people of color with disabilities. And yeah I think that we must like if we’re talking about inclusion, I think that we can’t support policies that will criminalize people.
>> I would second everything that Fulani just said this is Thea.
>> This is Anita. I just wanted to say in response to Sarah I read a book Becoming Myself by Darrell Jones and by an executive director of an independent living center in the field for many years has invisible difficulties and she is writing very much about coming to a different sense of identity of herself that includes not just [inaudible] But that the concept of learning what I realized reading it after being in the movement for 25 years and 68 years old trying to still figure out how to stop pushing all the time and not taking care of micron in this case health issues was I happened to be realistic about what I am capable of doing. I was a single parent, chronic illness since I was a teenager I learned to push through that stuff and you have to keep working under those circumstances so there’s a good piece about that but I just appreciated what Sarah was saying as a young woman and a mother about what we’re partly one of the reasons that criticism in the movement is that internalized in the movement is where we pick on each other and be mean to each other so I’m glad oh for this conversation and I wanted to point out that book about another way of taking Kay of ourselves honoring ourselves as unique souls hopefully in a delightful not just a miserable way.
>> Thank you so much this is Jessica again and I hate to cut things off because this has been a fascinating conversation but unfortunately we’re at the end of the hour and I want to ask people to stay on for one more minute because I do have a couple of exciting announcements. But first I can’t thank our speakers enough just an incredible group of people thank you so much for sharing your time, your insights expertise. Please help us continue the conversation by sharing some of the thoughts and I know other people have comments and questions we would love to hear those on list serve or Facebook or other means. We will also have the recording and the transcript of this call up on the NDLA website in the next few years disability leadership.org so please pass that onto people who weren’t able to be here. I want to thank our captioner for making this accessible. And NDLA for funding that. Our next call is going to be about disability race and police brutality. And thanks to access living and Bree Raymore for putting it together. We have a different day and time instead of our third Tuesday is actually Friday April 8th mark your calendars and that will be at the at the same time 1 to 2 p.m. eastern time. I think we just covered it thanks again to everybody for speaking and for participating today. And have a wonderful day and take care of all yourselves.
>> Thanks so much.
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