#GetWokeADA26: Disabled People of Color Speak Out, Part Two
This is the second of a 2-part report looking at the lives and stories of disabled people of color by Vilissa Thompson and Alice Wong for Ramp Your Voice! and the Disability Visibility Project.
Part One of the report covers the following topics from our online survey:
- Introduction
- Description of Survey
- Racism, Discrimination, Violence, and Ableism
- Disability Rights and People of Color
- Impact of the Americans with Disabilities Act
To read the first part of #GetWokeADA26: Disabled People of Color Speak Out, go to: http://wp.me/p3Ov4P-FA
Intersectionality and Disabled People of Color
We received many responses about the intersectional lived experiences of disabled POC. Respondents talked about the tensions and issues that they experience as being “both and” or a “minority within a minority.” Some common themes include the following: the pressure of having to ‘choose’ a primary identity, being the only one in the room like yourself, the need to represent and speak for multiple communities all the time, exclusion and barriers to certain communities, and aspects of your identity being invisible depending on what space you are occupying.
These stories show how disabled POC traverse and belong to multiple communities simultaneously. Nothing is mutually exclusive for disabled people of color.
Respondents shared stories of how inequality impacts them on their earning power, access to healthcare, housing, employment and economic self-sufficiency. Issues that affect white disabled people are going to be experienced differently by disabled POC due to multiple oppressions. This must be recognized and acknowledged by the mainstream disability community.
Tension and pressure being part of multiple movements and communities
Reyma McCoy McDeid, African American Aspergian:
We live in a society that, on the whole, is comprised of individuals who think that people can only be a member of one minority group at a time. For someone like me, who is a woman of color and a person with a disability, I often feel pressured to pick a movement….I…am a person who experiences layers of diversity and, therefore, wish to represent that within the “disability rights” movement.
Finn, a queer, black, autistic, disability advocate:
As a queer, black, autistic person, I feel that all these different intersecting identities impact the way these issues affect me. I feel as though I’m only allowed one marginalised identity, not several, so I might get treated as though I’m JUST black, rather than black and queer, or black and autistic, or all three of those things. It makes me feel pretty invisible at times.
Feeling like a unicorn, singular and alone
Mary Lee Vance, Disabled Female Korean Adoptee:
It is challenging to be a Disabled Asian American Female Adoptee Administrator in higher education because generally there has been no one similar to me for people to reference.
Jae Jin Pak, Korean, Disabled, Male, Straight, American:
I can connect as a disabled person, but I have not seen or met many Asians with disabilities at these events. Feeling like I am a minority has caused me to feel tension and alone at times. I really do feel empowered being in a room and working on disability rights. However, outside of those discussions, I have just felt like I stick out.
Ellen Erenea, a Filipina with dwarfism, mother of two:
I feel as though I’m the only one representing the API community, where I know there are more. I do feel welcome in the disability community. However, it’s the differences within differences that eventually leave me feeling alone mostly.
Attitudes and challenges within diverse communities
Angel A. McCorkle, 24 year old black autistic writer who has OCD:
I’m black and the black American culture doesn’t have a great history when it comes to begin treated for mental illness. My OCD and autism went undiao [sic] for decades and so did my depression, despite numerous symptoms. I was encouraged to hide or ignore others.
Lulu, a pansexual Puerto Rican with a disability:
My disability, sexuality, and even my race are invisible to most people unless utilizing a cane or wheelchair. I can blend in as white but I don’t want to, I am recognized as Puerto Rican more on the east coast where their assumptions of Hispanics are not just darker skinned Mexicans with black hair. Sometimes I wish who I am was more visible, to be seen is beautiful.
Multiple identities and challenges of identifying as ‘disabled’
Leanne Libas, an Autistic Asian teenager who wants to make a change:
I’m autistic. I’m Filipina and Chinese. I’m a young adult. I’m the first generation of immigrant parents. I identify as a female. For a long time, I have acted neurotypical…The easy part was identifying as a disabled person. The hardest part was getting immersed into the d/Disability and a/Autistic culture. I’m at a different point in my life. I never thought that I would get involved with advocacy because I usually tend to keep my views to myself. However, being an advocate, I’m learning more about standing up to my views and beliefs. I’m proud to be d/Disabled and a/Autistic.
Impact on inequality
Tiara S., a physically disabled woman of color:
The biggest thing is to be able to work and wed. I am a woman. That means $0.78 to the dollare [sic] compared to men. I am a POC, so I’m less likely to get even that much. I am disabled, so I have to deal with prejudices all around. The most pressing issue is trying to prove that I am just as good as my white, able-bodied male counterparts. All while trying to make magic happen and keep the lights on.
Healthcare, housing, employment, economic self-sufficiency
Rachel Lovejoy, Disabled, single mother of 2:
Health insurance and the affordability of being chronically ill. I can’t afford my copays. I’m a mother of 2 teens. They have health concerns too. And being the black parent of biracial children, I’ve had to prove my parentage to health providers before care would be discussed with me.
Krista Flores, Latina woman with a disability:
I think the most pressing issue is employment, services and health care. The current system is not set up for people with disabilities to be successful and maintain employment. Assistance is available to help you secure a job or not work, but there is minimal assistance designed to help a person who is employed, despite the fact that services are needed to stay employed.
Lateef McLeod, an educated African American man with cerebral palsy:
My most pressing issues related to my disability is finding a full time job. I think that is because of both my mobility disability and my severe speech disability makes employers think twice about hiring me.
Anita Cameron, Black Disabled Lesbian:
I’m still at risk of institutional placement. I still deal with a lack of affordable, accessible, integrated housing. There is still a lack of accessibility in doctor’s offices: lack of accessible scales, examination tables, etc.
Disabled People of Color and the Disability Community
Our survey asked disabled people of color specifically about their involvement, interactions, and attitudes toward the disability communities they belong to, especially disability-related organizations, agencies, and advocacy groups. Respondents spoke of the following:
- There is a lack of acknowledgement of race, racism, and inequality within the disability community.
- A majority of organizations have little representation of disabled POC in their staff and leadership.
- The concerns and issues of disabled POC are not taken seriously.
- Sense of invisibility or feeling like an outsider as a disabled POC in the disability community.
- Added dimension of disabled POC with non-apparent disabilities and not being seen as disabled or ‘disabled enough.’’
It wasn’t all negative! Several respondents felt welcomed and a sense of belonging by the disability community. The power of peer-support and connecting with other disabled POC is immense and invaluable.
Lack of acknowledgement of race and racism
Shawn, African-American:
All issues are amplified because within most of the disability community, race is never addressed or acknowledged as a problem within the community. Many organizations and advocates hold the same conservative/typically white views as others non-disabled folks…except when it comes to their personal interests. There are people extremely hostile to affirmative action (for example) for POC but who consistently advocate for policies which resembles affirmative action for middle/upper class people with disabilities.
Finn, a queer, black, autistic, disability advocate:
Another thing I’ve noticed is that the autistic advocacy movement is incredibly white and I’ve struggled to find voices like mine there until very recently…we as a community really need to work on full integration of disabled people who experience multiple forms of oppression. There are too many of us who are isolated because of multiple systemic forces acting upon our lives, like disabled POC in jail or in institutions because they can’t access services, and LGBTQ disabled people who’ve found themselves homeless or marginally housed for similar reasons. I’ve experienced the latter in the past.
Anita Cameron, Black Disabled Lesbian:
Racism is rampant in the disability community, yet, for the most part, we don’t want to discuss it and get defensive when race or racism is brought up…The vast majority of disability organizations are White-run and led and they have no problem with that. Also, they think because they have poc involved that they have satisfied diversity when in fact, there are no Blacks involved. And when Blacks are involved, we are tokenized. We need to get better at this!
Sofiya Cheyenne Perez, artist:
Always feel tension in a room. We are not thought of as a person, but rather an annoyance.
Kathy D Woods, an African American Little Person with Achondroplasia dwarfism. Woman Of Faith. CEO/Founder:
As a POC my experience in the Little People community has been somewhat welcoming. Since I started the only successful clothing line…I’ve felt tension, jealousy and envy from other LP’s. I feel if I was not a person of color, I would be more supported by the LP community.
Invisibility, lack of representation
LaDonna Kirkaldie Fowler, a Native American woman with disabilities:
I have never really felt understood as a tribal woman with a disability. Our cultures are so varied and I find myself repeating over and over what our differences are compared to dominant culture in a continual education process before we can even discuss the issues of disability. I found it interesting at one conference in a discussion with someone from the CDC that all others races were listed except for Native American which were then included in the “others…” When I mentioned this glaring omission I was informed that the populations listed had something we did not have….power, position and money. So that day in particular I felt tension, anger, ambivalence and very much invisible.
Finn, a queer, black, autistic, disability advocate:
I often feel like an outsider because much of the disability rights community is incredibly white, and there’s a lack of understanding of the ways race and ethnicity can intersect with disability. I feel as though our voices are being pushed to the margins, while white people’s experiences are treated as universal when they’re not.
Grace Tsao, an Asian American woman with a disability:
Our voices are often invisible or silent. I have felt that some white people with disabilities have minimized the experiences of people of color or LGBT people and believe that disability trumps all other aspects of identity…all aspects of identity are intertwined and linked and are important.
Invisibility of people with non-apparent disabilities
Anonymous, a Black woman, professor, mother and wife:
It is relatively recently that I have come to identify with the disabled community despite my long-time “ally” and advocate status. Having invisible disabilities, some of which I have only recently identified, has made it difficult to figure out whether and how to try to connect.
Isis, a multiracial invisibly disabled girl:
I feel welcomed by the disability community, but not by the visibly disabled. I don’t know it feels like my own disabilities aren’t valid or “disabled enough” for them.
Anonymous, an “ambiguously raced” queer asian woman:
I also feel that because of my ethnicity and gender, I am not considered disabled by many people. this may be a result of PTSD not being seen as a “real” disability or– maybe it’s a chicken and egg thing.
Finding community and support
Yolanda, a nerdy latina Pansexual on wheels depression fighter:
My family being catholic and my dad being from a poor farming village in Mexico believed the best thing for me would be if I was suddenly healed and that weighed heavily on my shoulders. Then I started meeting other people like me and realized yeah there are hard days when it feels like society doesn’t want you but, in the disability community you have people supporting and loving you for all of you and who tell society to fuck off when you’re too tired to. It’s not perfect but it beats being alone and trying to figure it out.
Malia, a young lady of mixed heritage who works to manage her mental health challenges:
For a long time I did not feel like I belonged, although I know I looked normal on the outside. However, when I started working at a peer-run agency, I finally felt like I found somewhere I belonged. I no longer had to hide who I was or risk losing opportunities because of my mental health experiences.
Angel A. McCorkle, a 24 year old black autistic writer who has OCD:
I feel welcome so far, thanks largely to the efforts of other POC being loud and visible and encouraging me to be the same.
Recommendations to Disability Organizations and Communities
Thanks to the rich expertise of our survey’s respondents, they provided the following recommendations on how disability organizations and community at-large can “Get Woke” on race and racism in a respectful and meaningful way:
- Listen and engage with disabled POC.
- Don’t expect disabled POC to do the majority of the labor of educating you.
- Acknowledge white privilege and other forms of privilege throughout your organization’s work/activities.
- Recognize the pain that disabled POC experience as multiple marginalized people.
- Do not co-opt, appropriate the civil rights movement or compare it with the disability right movement. Just. Don’t.
- Build safe spaces for everyone to engage openly and honestly.
- Do not represent our views without us.
- Hire disabled POC as staff, consultants, and experts; and treat them as equals, not tokens.
- Realize diversity means more than a few disabled POC in a room!
- Examine your policies and practices for implicit bias.
- Build coalitions with communities of color and other social justice movements that are already doing intersectional work.
- Support the creation of diverse media by disabled POC.
Check out the quotes below for more specific recommendations from the survey respondents.
How to engage respectfully, listen and learn
Finn, a queer, black, autistic, disability advocate:
Listen to disabled POC and what we’re trying to say about our experiences. Look at posts on hashtags like #DisabilityTooWhite. Read our blog posts. Talk to us in person…And when you reach out, do it respectfully, and not with the attitude that we’re going to be your automatic educators.
Grace Tsao, Asian American woman with a disability:
As a woman of color with a disability I don’t have the privilege of just turning it off or tuning it out when I want to; racism, sexism, and ableism is a constant presence in my life. Allyship needs to be more than just providing support by writing Facebook posts, sending out a tweet, or sharing an article on social media. It is a start, but not enough…Reach out, care, support…but make it a real part of your life.
Shawn, African-American:
Stop using the black struggle for equal rights (particularly Dr. King) only as moral leverage to drive home arguments for disability rights but fail to reflect upon their own need to practice what they preach.
Angel A. McCorkle, a 24 year old black autistic writer who has OCD:
…earnestly trying to learn and be open. Build spaces that are safe as you can make them so that compassion and truth become second nature. Be sure to know what compassion is and that it is not selective. Self care should come first so that we can be compassionate and mindful at the same time.
Anita Cameron, Black Disabled Lesbian:
Look within and see why you struggle. Make a concerted effort to reach out to us as full partners, not just tokens to be silenced when you don’t want to listen.
Doing “the work” within an organization, movement, or community
Jae Jin Pak, Korean, Disabled, Male, Straight, American:
Reach out and engage with organizations, leaders from different communities of color. Chose to learn from these leaders, organizations, groups. Be ready to and wiling [sic] to make changes to policies, practices, staffing, materals [sic], etc based upon feedback to be more approachable to communities of color. Do an self agency/program assessment to learn how privilege and oppressive messages has influenced your day to day operations.
Anonymous, an African-American female, with a disabling illness:
Hire people of color so those voices are heard…Actively seek people of color at all times. Make your environment one where people of color are safe and welcome even if you currently do not have anyone in the environment. Do the work.
SD:
…listen and make room for PoC. Holding more panels, webinars and discussions in the community would help significantly. Use social media to engage, make sure venues are accessible to all. Show that you value people with disabilities as more than just an afterthought.
Building coalitions
Lateef McLeod, an educated African American man with cerebral palsy:
People with disabilities must build coalitions with other people of color, all genders, all sexualities, and all economic strata with disabilities to build a more united community with each other. Only when we are united will we make effective change to better our situation.
Need for More Representation of Disabled People of Color
Another major issue that the respondents frequently highlighted was the lack of diverse images of disability in the media. One thing disability organizations can and should do is support the creation of media by disabled POC that reflects the full range of diversity in our community.
When you don’t see yourself in the media or in images produced by the disability community, you think you don’t count. White privilege is never knowing what that type of racialized erasure feels like.
Disabled POC who speak out about this have been criticized and harassed online. Online communities and activism via social media such as #DisabilityTooWhite are creating spaces where these voices are heard and valued. Below are a few quotes from our respondents about what they want to see in stories, culture, and media:
Mary Lee Vance, Disabled Female Korean Adoptee:
…our stories still are not being shared with the younger generation to the extent possible. It is time to see ourselves reflected, and for them to see themselves reflected.
Jessica Gimeno, person with visible disability + 4 other invisible illnesses:
Needs to be greater representation of people living with psychiatric illnesses…and “visible” disabilities. Having a disease like bipolar is hard enough but add to that a daily cane or a wheelchair and sometimes it’s hell to be honest.
Judith Wilson Burkes, Community Disability Advocate and Nonprofit Founder:
Awareness comes from exposure, and the more the conversations are had, the more POCs with disabilities are in the media, in positions of leadership and collaboration, the more the issue becomes something people know, recognize and begin to think about solutions.
Jae Jin Pak, Korean, Disabled, Male, Straight, American:
I also don’t see a lot of multi-cultural, multi-lingual representation in mainstream disability media. There are some in targeted PSA’s, but not so much in mainstream content. I’d like to see movement to be more fair representation of the diversity in mainstream disability media.
Heather Watkins, disability advocate, mother, author, blogger, disabled WOC:
As a disabled WOC, our pain, personal needs, comprehensive aspects of living with disabilities aren’t typically recognized on a wide scale nor are we reflected across media landscape and has an impact on how we’re conceptualized.
Rachel Siota, Latina, feminist, and Spoonie warrior, also a proud Planned Parenthood intern:
Everytime I see “inspiring” stories of people living with disabilities, it’s always some white person who “didn’t let their disability stop them!” I’m tired of the inspiration Porn of a white woman who traveled abroad. Where’s the POC folks who already are treated like second class for having darker skin colors and unpronounceable last names? Where’s the representation of POC women battling breast cancer and Latina girls learning to manage their diabetes while learning English at the same time?
Conclusions
The amount of support and participation for the Call for Stories exceeded both of our expectations for this project. It humbled us dearly to read the candidness of everyone who participated; for some of you, this was the first time you openly disclosed your experiences, and we are very grateful that you decided to use our Call to do so. Our hearts were full from every experience we read; every one of you gave us so much of yourselves in your accounts, and we are truly indebted in being trusted with your truths and to share them with our community and society.
The participation level of the Call provided additional proof that it is imperative for ALL disabled experiences to be visible and understood. For some of our respondents, the over-whiteness of disability has stymied their ability to fully be included and safe in expressing their intersectional voices, and that is a key aspect we wanted to highlight as we observe the 26th anniversary of the ADA. We cannot claim to be an inclusive, welcoming community when disabled people color are underrepresented, ignored, and feel disconnected from the very space where they should feel safe to be who they are that includes and goes beyond their disabilities.
If our respondents have taught us anything through sharing their perspectives, it is that we as a community have a tremendous amount of work ahead of us in order for every member to feel validated and empowered in our space. This need for complete inclusion, acceptance, and empowerment must be multi-level: from our local, national, and federal organizations and agencies, to those of us doing advocacy work on the ground and online. The segregation, isolation, and erasure of disabled people of color and our experiences cannot continue, and with projects like #GetWokeADA26, we are one step further to extinguishing such omission within our community.
We invite you to connect with us through Ramp Your Voice and the Disability Visibility Project or on Twitter.
Time to Get Woke & Stay Woke!
In Solidarity,
Vilissa Thompson @VilissaThompson
Alice Wong @SFdirewolf
*If you reference or quote from this report, please use the suggested citations:
Thompson, V. & Wong, A. (July 26, 2016). #GetWokeADA26: Disabled People of Color Speak Out, Part One. Ramp Your Voice! http://wp.me/p3Ov4P-FA
Thompson, V. & Wong, A. (July 26, 2016). #GetWokeADA26: Disabled People of Color Speak Out, Part Two. Ramp Your Voice! Disability Visibility Project. http://wp.me/p4H7t1-MLn
**Special thanks to artist Mike Mort who created the Wonder Woman image and allowed us to use it for #GetWokeADA26!
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