Confronting the Whitewashing of Disability: Interview with #DisabilityTooWhite Creator Vilissa Thompson

A new hashtag campaign has been making waves in the disability community and facilitating dialogue about how we see disability. #DisabilityTooWhite, a hashtag started by disability activist and blogger Vilissa Thompson, has been starting discussions in the disability community regarding the media visibility and representation of disabled people of color. At the same time, it has been drawing controversy from those who do not understand or agree with the hashtag. I took the time to sit down with Thompson to talk about the origins and purpose of the hashtag, the representation (or lack thereof) of disabled people of color in the media, and what we can do to participate and elevate the voices of disabled people of color.

Q: How did you come up with #DisabilityTooWhite, specifically that phrase?

A. It came about with the conversation I stumbled upon on Twitter that that [mentioned] an article on XOJane that discussed disability and beauty. Blogger and advocate Alice Wong was talking about how [it left out] representation of disabled women of color. I had started to respond to her because I noticed it too. While I was responding, it just popped into my head: disability too white. It is pretty self explanatory that disability [representation] is too white, and I started putting it in my hashtag, and everybody saw it and started putting it on their tweets, and it kind of took a life of its own. [The hashtag] is pretty blunt and in-your-face. I feel like if I wanted to create a hashtag, even accidental like this one, I would definitely want it to stand out and really be understood.

Q. What does #DisabilityTooWhite mean to you?

A. I think with me, especially with my particular advocacy focus, it basically means that we want to pay attention to representation of people of color. There is a lack of representation and diversity within the disability community from the organizations that are supposed to empower us as individuals...there is a lack of diversity in those voices and those stories. For me, it boils down to a frustration that there is very little movement to eradicate that problem, to eradicate that erasure of people of color within our history and what we do as advocates, when it comes to the issues that we fight against...particularly when you add disability into situations when you identify a person's marginalization. So for me the hashtag really speaks to all of those things that we have failed to do as a community to be inclusive and accepting, and to have those conversations about disability and what it means to be of color and disabled, and some of the disparities surrounding that.

Q. How have other disabled people of color responded to the hashtag?

A. They really jumped on it, they really shared what they've been doing [as] disabled people of color, what they do within their particular advocacy work or other professional work that they do. It is very empowering to see them come together over something that was created spur of the moment. It really just shows that there is a great need and a great desire to diversify disability so that everybody can be included. I learned that there are many advocates that I didn't know before Twitter particularly, and I've been able to really connect with those individuals and to build a more powerful support group for people of color with disabilities.

Q. Have you seen a response from people of color without disabilities to the hashtag?

A. I think that there are some who recognize this, but I think that there is a big gap when it comes to members of minority groups who are not disabled understanding us in general and particularly when it comes to being of color and disabled. So there's a very big gap in minority communities when it comes to the inclusion of disabled voices. I think that the conversation probably got the attention of many of those nondisabled people of color, which I'm glad about, but I really hoped that there would be a bigger [push] for them to be involved in this. I am really disheartened that a lot of African American organizations do not talk about disability, or if they do, it is not in our experience or our voices. They talk about it in the way of the medical model of disability. [Our] experience is as important to the black experience as every other part of blackness.

Q. When you started it, it was obviously in response to the lack of representation of disabled people of color in media. Can you expand on that a little bit more?

A. You don't see disabled people of color in media, and if you do, they are usually played by nondisabled actors and actresses of color. I think that alone erases us from being a part of the few roles that are meant for us, that's part of the problem. There's only a handful of disabled actors and actresses of color that come to mind that are doing great work that deserve the same attention and support as their white counterparts. So I think that when it comes to the media, the media has to do a better job at highlighting better portrayals of disabled actors and actresses to really be visible and have those roles; to be creative enough to write shows, screenplays, and movies; and to give them the space, financial support, and backing to tell our stories our way. There's a lot of room there for representation of disabled people of color in the media to be more present, to demystify what it means to be of color and disabled.

Q. How does it influence what disabled people think of themselves when they're not seeing representation in the media?

A. They feel like they're alone. I know that growing up I rarely saw disabled women or disabled black girls on television and when they were, it was always for the charity model, raising money to hopefully help us in our livelihood. So that lack of representation really affects one's self esteem and one's ability to connect with all of their identities. It affects their ability to feel like they're not alone and feel included in their disabled identity, in their "of color" identity, in their other identities they have. I think the lack of representation hinders our abilities to feel like we belong, to feel like our lives and our stories are important. We feel isolated and outcast when you don't see people who look like you, not just racially but disability-wise.

Q. Are there any positive trends right now with regard to disabled people of color in media? If there are, what are they doing correctly?

A. I participated in a #FilmDis chat recently about the representation in the series Underground on WGN. We have representation and are depicted, but that representation is depicted by nondisabled actors, so we kind of have a rock and a hard place idea of there's decent representation. It's some representation, but it's not actual disabled actors portraying those roles. It makes you wonder what is best: is it better to have accurate representation or is it better to have more representation that is not the ideal, that is not as inclusive or as empowering as it could be, because of these factors? So when I look at media and how people of color are portrayed, at times I have to look beyond what is problematic. In this case that is a nondisabled actor playing a disabled role, and [I have to] really focus on the role itself, or focus on the character and find some of empowerment or resolve from seeing someone who looks like me represent my disability community, just kind of having to push aside [the nondisabled actor] and focus on the storyline. I hope that one day we won't have to push aside anything to focus on the storyline, that we have portrayals that are empowering through the actors and actresses that portray them.

Q. There's been a lot of backlash by people who don't understand it or don't agree with it. What do you make of the backlash against #DisabilityTooWhite?

A. I think that when you talk about controversial topics, it does bring out the worst of the internet, and we had another example of that with the hashtag. I know for me, my main concern was allies and advocates, and other participants who may have been triggered by some of the hate speech that was going on. It was more of my concern that they were okay, and I don't really care about anything that comes from trolls because for me, I was speaking my truth as a disabled black woman, and others were speaking their truths too, and when you're speaking your truths, the wrong opinions don't matter at the end of the day. I think that those who may have hated the hashtag or hated what we had to say, that's more on them. It shows the need for more conversations like this to occur so that when disabled people of color talk about racism, talk about lack of representation or being isolated, there hopefully one day won't be any backlash.

Q. What can white disabled or nondisabled allies do to participate respectfully in this hashtag?

A. I think that they need to understand their privilege, be it white privilege, able-bodied privilege or both, they need to understand that the world that they live in gives the advantage to them versus those who don't have the same privileges. They need to realize that when people have multiple marginalizations and speak out on their own experiences, they need to listen and not discount their experience. Be respectful when people speak their truths. Also speaking up when you see things that aren't okay. We see people of color being excluded from organizations, when there's lack of diversity on the boards of disability advocacy and other service organizations. We need to pay more attention to how the world really works outside of white privilege, able-bodied privilege, or a combination of both. Really become allies for disabled people of color and realize that your voice should not power over or be louder than the group of people you want to be an ally for, I know that's something that is particularly something to be mindful of...As allies we need to know how to walk that fine line, when we need to figure out how to magnify their voices and their existence in the world.

Q. What are the next steps in terms of sustainment for #DisabilityTooWhite?

A. I think that just continuing to talk about it, paying more attention to the things that the hashtag brought up. For me, with my advocacy focus on the disability and "of color" experience, it is another reason for me to be more vocal and more prominent in my focus on this issue. I just really want the conversations to be more reflective, for people to pay more attention to the world that we live in, especially those who are disabled, and allow people of color to stand out more and be more present and really vocalize our truths and help create more diversity in the community. Now is the time, especially with technology and blogging and disabled experience being more able to have a broader reach, diversity has to occur so that we all feel included in the movement.

Q. Do you consider the campaign a success? What would you like to see happen?

A. I think that for it to be an accidental creation, it was successful, and it stirred up conversation and hard feelings about it. When I create anything like that that targets my particular focus, I want it to be controversial and to be impactful and to be a dialogue within our community, so for me it was successful. I do think that to make more room for more discussions to be had around #DisabilityTooWhite and for more discussions to be created around other identities, like other races and the LGBT community, individuals who are of color and disabled and deal with poverty. I don't want it just to be a "hot topic of the month." I think there's plenty of room for the conversation to continue long after the hashtag has died down.

#DisabilityTooWhite: Complex Conversations Storify by Alice Wong

#DisabilityTooWhite: Making the "Good Trouble" in Advocacy by Vilissa Thompson