Revisiting #DisabilityTooWhite One Year Later (Hint: There’s Still A Problem)

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The activist behind a tweet that launched a pivotal conversation says there’s still a lot of work to be done.

One year ago today, an xoJane article about disability and beauty that featured zero disabled people of color “fired up” activist Vilissa Thompson so much, she decided to create a hashtag that would be the catalyst for a much-needed conversation. As a wheelchair-using Black woman, she was moved to call out the lack of visibility of disabled people in the media and in disability organizing. So she sent this tweet into the world:

Soon, the hashtag began trending as other people of color with various disabilities, both visible and invisible, relayed their stories and thoughts on the intersection of race and disability and their experiences with the corresponding oppressions related to those identities. In just one 24-hour period, it generated 13,000 tweets, and Visilla and the hashtag were featured in outlets including the Huffington Post, Daily Dot, and attn:.

Thompson took the time to talk to me about what has changed (and what hasn’t) in the year since the hashtag launched, why the conversation is still important, and how those who care can work to make #DisabilityTooWhite irrelevant. (Note: The interview has been edited for clarity.)

First, tell me a bit about your background as a disability rights advocate and blogger. What was the impetus for your journey into activism?

I am a macro-focused social worker. I began to write about the disabled experience in 2012. I created Ramp Your Voice! in 2013 as a way of sharing an [intersectional] perspective as a disabled person — combining my social work, psychology, and African American studies educational backgrounds with my lived experiences as a Black disabled woman. I wanted to share my thoughts and views about topics such as sexuality, dating, politics, education, and others because I didn’t see many women who looked like me writing about [these issues from those viewpoints].

Vilissa Thompson

For clarification, what do you mean when you say “macro-focused social worker?”

Micro social work is work with families, individuals, and groups. Macro is big systems focused. Macro can [look like] social workers working on community building, working in politics, higher education, etc. My focus is advocacy and education centered.

Nice! Do you work with any particular agencies or organizations?

I work solo in the advocacy work I do but I am a partner in the online macro social work group called #MacroSW. We host a Twitter chat every Thursday about a topic that we want the social work community (practitioners, students, etc.) to know about.

Why do you feel it’s important to talk about representation of disabled people of color in the media and in disability justice activism? What harm is caused by that erasure and invisibility?

When we think of disabled people, the faces, stories, and voices of white disabled people (mainly white disabled men) usually come to mind. This leaves those of us who aren’t white without our own stories.

This lack of visibility greatly impacts the way we view ourselves. “Where are my role models, the people to whom I can look as examples of what it means to be a disabled person? Don’t I matter?” It affects our sense of worthiness and importance and leaves us feeling othered and isolated, especially when we are the only disabled person in our families, schools, or communities.

‘When we think of disabled people, the faces, stories, and voices of white disabled people (mainly white disabled men) usually come to mind.’

The erasure of disabled people of color in disability history books adds to that invisibility, as we fail to acknowledge the contributions of disabled people of color in our movement. It goes back to who is visible and whose names, involvement, and stories are deemed “worthy” of spotlighting and celebrating.

So, with all of that in mind, do you think things have changed since you started the hashtag? Have you seen sincere efforts by white disability advocates, organizations, etc. to confront their whiteness and make space for the unique issues that disabled people of color face (and the nuances of how issues that people of color face can be different depending on racial identity)?

Things are changing, but not at the pace they should be. I believe that younger disabled generations are open and are demanding more intersectionality and visibility for disabled people of color and are creating spaces for it to be reality.

I believe those who are older, particularly older leadership, are resistant to the changes needed. Shaking up the status quo means allowing those who were absent in the past to have a seat at the table. The resistance is related to the “good ol’ boys” club that exists in our community, and the covert and overt racism present in historically white-led organizations.

I am fortunate to know [white disabled people] who are using their white privilege to combat the racism and white supremacy in our community and to provide opportunities for disabled people of color to feel safe, welcomed, and included. Their allyship/co-conspirator efforts are appreciated, but there still needs to be a push against the norm that has existed for too long.

I’m more connected to individual activists as opposed to organizations, so I can feel disconnected from that experience sometimes, especially as I’ve become more selective about the friend requests, etc. that I accept, so thanks for that insight. Do you have any specific recommendations for those accomplices/allies who really care about being held accountable going forward?

Listen to and seek out the voices of disabled advocates, particularly those of us who are [multiply] marginalized. There are many issues that affect disabled people of color disproportionately compared to our white disabled counterparts, such as the school-to-prison pipeline and police violence and brutality, just to name a few. Without the [intersectional] understanding that race and disability create differences in how we live in society and how society reacts to us…our advocacy work will be severely incomplete and ineffective.

‘There are many issues that affect disabled people of color disproportionately compared to our white disabled counterparts.’

One thing I find is that [able-bodied and -minded activists of color] are not knowledgeable about the disabled experience or how disability is intertwined in the oppression that members of their communities endure. Educating oneself about disability rights and history and understanding how disability, ableism, and the combination of “-isms” impede one’s life are important to avoid excluding disabled people of color. Your work will always fall short if disability is not recognized as an oppression.

Do you find that there are any other unique challenges for those of us at the intersection of disability and race (besides the school-to-prison pipeline and state violence)? Are there any studies on other disparities, or works that address the barriers disabled people of color face compared to disabled white people?

The issue of unemployment and underemployment for disabled people of color does not receive the recognition it deserves when we discuss this issue. Black disabled people, for example, had the highest unemployment rate in 2015 at 17.4%, in comparison to disabled whites at 9.6%. When we talk about the economic barriers for members of our community, those who are of color are gravely at the bottom, and this imbalance is not being discussed as widely as it should be by disability leadership.

[Alice Wong and I] did a study last summer that pertained to the experiences of disabled [people of color] and the Americans with Disabilities Act (ADA). It was the first of its kind that centered [the legislation’s impact on disabled people of color] and the experiences we have in society and in the disabled community. Alice Wong is the founder of the Disability Visibility Project. [For readers, here are parts one and two of that study.]

Yes I know Alice! I guest hosted a #CripLit Twitter chat [in August 2016] and she guest edited The Deaf Poet Society’s latest issue [where I currently serve as a non-fiction editor]. So, I know that in your previous response you kind of touched on this, but in an interview with The Huffington Post last year, you mentioned that there is also very little discussion of disability in organizations that cater to various groups of color. Could you speak on those experiences a bit more?

Many organizations fail to see the connection in how disability relates to the work and mission they do. This is due to a lack of understanding about disability in general that pervades society. That lack of understanding excludes disabled people of color and the issues that affect us specifically.

In my work, I conduct presentations with social workers and other helping professionals to bridge that understanding gap and [teach an understanding of] disability from the social model instead of the medical model. The medical model of disability is partly why this gap thrives — we see disability as “other” and not as a culture, as a powerful group. We view disability, and thus disabled people, from pity, charity, and inspiration porn [perspectives] and don’t see how disability is mixed within the issues that we fight for — education, poverty, employment, violence with the police, etc.

‘Many organizations fail to see the connection in how disability relates to the work and mission they do.’

Once organizations start to see that disability IS a part of the work they do, and it needs to be addressed as such, that is when the shift will occur. These organizations have ableism that must be tackled — you cannot talk about disability or assist in the movement if you hold ableist views that are harmful to us. Doing that self-inventory is crucial in order to work alongside advocates like me.

I’m wondering, what are some of the ways that you’re seeing disabled people of color advocating for ourselves now — since we know that we can’t rely solely on the willingness and ability of white disabled people and able-bodied/minded people of color to see past their privilege?

Disabled people of color are creating our own spaces and aren’t waiting for a seat at the table. I think this is important because we have the power to tell our stories our way. I know for me, I wasn’t going to wait for someone to discuss the issues I cared about — I was going to do it myself.

Refusing to be ignored or dismissed are sentiments many of us share. We are not afraid of calling out people who disregard our livelihoods or do not grasp how being [multiply marginalized affects] every aspect of our lives. You cannot claim to see one aspect of us and bypass the rest — see us as whole or else.

[In addition, developing] partnerships/collaborations with one another is a tactic I, and others, have used that works. When we unite, we cannot be ignored. I want us to continue doing the good work that has yet to be finished — we are just getting started.

So, in that same HuffPo interview, you mentioned Underground, the hit period drama series that airs on WGN and follows a group of enslaved descendants of Africans as they attempt to escape the Georgia plantation on which they reside. Do you feel that you’ve seen more or less media representation for disabled people of color since that interview? Also, what are some barriers to access for disabled creatives (actors, screenwriters, directors, musicians, etc.), especially those of us who are also people of color? What about the various arts and entertainment industries needs to change?

I think the representation has been the same. Underground continues to be one of the few programs that has depicted disabled Black people in a positive light, particularly in season two with Harriet Tubman and Daniel.

Hiring actual disabled people to be a part of creative projects, from actors to producers, directors, and writers is a critical need. We need disabled people in every role of production so that our stories are told accurately and realistically. We also need diversity of the disabled experience. The white disabled male storyline still dominates entertainment. We need to see those of color on the big and small screens. Our stories matter too…There is no way around that truth — our stories have a fanbase that cannot continue to be cast aside.

Ultimately, what is your vision for #DisabilityTooWhite in the future, besides the obvious hope that one day the hashtag isn’t needed?

I want #DisabilityTooWhite to continue the conversation that it started — to address the erasure, exclusion, harm, and invisibility disabled people of color experience in [the larger disabled] community.

‘I want #DisabilityTooWhite to continue the conversation that it started.’

I am working on a project that will continue the discussion that I hope to release this summer. I am [adamant] about us feeling safe and valued in this community. If we don’t feel safe within the disabled community, where else can we go? I am proud of what the hashtag has started, but want it to [develop] further in the call out of what is happening in our community.

Can you say more about your future ventures?

For the project related to the hashtag, I am working on addressing the ignorance disabled white people have about intersectionality in our community. I encounter disabled white people who expect me, and other disabled people of color, to do the emotional labor of educating them on racism, race, white supremacy, etc. I plan to provide a resource that allows them to learn and be proactive in becoming better allies/co-conspirators to the movement. I also plan to push forward the services I provide as a writer, consultant, speaker, and presenter. This is an area that I want to expand on within my advocacy.

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