Black Disability, Disabled Women of Color, Empowerment, Advocacy

Shimon:

Welcome to Doin’ The Work: Frontline Stories of Social Change, where we bring you stories of real people working to address real issues. I am your host Shimon Cohen.

In this episode, I talk with Vilissa Thompson, founder and leader of Ramp Your Voice!, a self-advocacy and empowerment movement for people with disabilities. We discuss Vilissa’s work to educate social workers, educators, and medical professionals about being helpful, rather than harmful, to disabled people, especially disabled women of color. Vilissa explains how the intersection of racism and ableism negatively impact this population and she shares steps that people can take to educate themselves to be allies and advocates for change. She also shares about creating the hashtag #DisabilityTooWhite and the Black Disabled Woman Syllabus. I hope you enjoy the conversation.

Hi, Vilissa. Thank you so much for coming on Doin’ The Work. I’m really excited to have you on here. I know you’re incredibly busy, so thank you for your time.

Vilissa:

Thank you for writing me.

Shimon:

Absolutely. You’re quite a presence in social media, online with all the work you’re doing, and I’m really excited to hear about it. Could you just kind of start out with letting us know what you’re up to?

Vilissa:

Well, I am a macro social worker. I’ve been a macro social worker for about six years now. I founded a blog organization called Ramp Your Voice five years ago in 2013, that allows me to talk about disability from an intersectional lens, and also combine that with a social work background. So, it’s been my way of sharing my experiences as a Black disabled woman and combining the two worlds, where I educate social workers about the disabled experience from a more intersectional, progressive, updated lens than what we usually learn about it, from our programs and field placement. As well as talk about disability issues that matter to me or what I see that’s going on in the same community that the broader society may not be so abreast of. So, that’s been the activism work that I do along with presentations, public speaking, being interviewed by great people like yourself. Just really doing what I can to spread the message that matters to me and empower people that look like me.

Shimon:

And how did this start for you? I’m sure it was a mix of personal experience and then becoming a social worker as well. Could you talk about how you got into this?

Vilissa:

Yes. I started blogging… was a blogger, after I graduated from my program for my MSW 2012. That was when I started to write about social disabilities. I have different political issues and really bring in some of the disparities that we see about the education and health care to our profession. I decided to branch out from that and really do something that’s more personal for me to really have the type of lens that mattered.

So that’s kind of how I really got started just to writing and really seeing a gap there, particularly when it comes to disability, to where there wasn’t a grand number of disabled people of color blogging or sharing stories at the time were really getting the attention on social media or through blogging. So that was very important to me. Also the flip side of that is really an abusive social worker, and a profession to an aspect, I would say of the experience that is missing from our programs. So, it was kind of a win win for me in a way to really do something that I’m passionate about. Really targeting two groups that I feel could learn a lot from others but are not really listening to each other for whatever different reasons, and really bridging that gap that I saw that was needed.

Shimon:

Yeah. Could you talk a little bit about what you just said in terms of not listening to each other and also, just some of the unique challenges for people of color with disabilities? In particular Black women, I know you focus a lot on Black women.

Vilissa:

Well I think that when it comes to social work, our language, our understanding, it’s very outdated. We focus on the medical model of disability, what centers on a person’s diagnosis and not so much on the [medical] (social) model, which is typically preferred within the disabled community, that has a more holistic look. So, I really felt that, for me, and I know that other disabled social workers, in particular those of color, really want the profession to really update its knowledge of, when it comes to this is how we look at disability, how we talk about disability, how we tend to teach first, the first language that says a person with disability, when the actual community prefers identity first language. It says a disabled person, a disabled woman, a disabled woman of color, or a Black disabled woman, where we know that we’re humans, we know that we’re people so, that doesn’t really need to be emphasized.

But the identity that we have, to many of us is more important. I think that’s the problem with social work is that, it’s not seen as a valid culture and identity as other marginalized groups. But that was really something that I really saw that we’re very behind on as a profession. Then really want to do what I can, to really get us information. As Beyonce would say, get information in a way, and really ensuring that we are able to advocate and work alongside the disabled community as allies or co-conspirators. Because we do go into this community and provide resources and support. I know from a personal standpoint as well as professionally, that the disabled community does not have a favorable opinion of social workers, due to some of the ableism, the social prejudice of the same people that they have encountered from social work.

So, I know that there’s a very tremendous gap that we feel, and that gap is educational, so that we do not be agents of harm and instead, the agents of change. So, I really see that, those communities not really coming together due to some of the harm, that has been done on to the disabled community, become social workers and not really know how to get social workers, to understand disability from the way we want the profession to do so. So, I really feel like for me, I made the kind of be it a bridge, a bridger in a way, to really come to colleagues. Figure that since I can navigate this particular space and do what I can to ensure that we are able to be true agents of healing, empowerment, affirmation, culturally competent in what disabled people want us to know and in the support services, and work that we do.

So I really feel that social workers can not get it wrong when it comes to working with the largest minority group in the United States and abroad. I think there is a lot that we need to learn, and really do the same to the same people. They’re really instilled from the values and the principles and ethics that we have, as a profession. That’s really what really matters to me in this type of work and getting those two communities to really see each other, listen to each other and heal, do some of that healing and amending some of the wrongs that have been done to disabled people by the profession. Allowing disabled people to really be more confident and to really voice what they want. So for us to know about them, the type of care that they need when it comes to hospitalization, when it comes to being able to stay in one’s community and not be placed in a nursing home or institution, and all those things that really matters.

When it comes to breaking it down with the disabled community, one thing that I do with social workers is talk about those marginalized identities within disability such as, disabled people of color, particularly Black disabled women and families. I talk about the disparity that disabled people of color endure, such as the school-to-prison pipeline, how disabled students of color, especially Black students are disproportionately impacted by that. Or, when it comes to police brutality, how disabled people make up over 50% of the police brutality incidences. That large percentage is made up of people of color.

So just really getting social workers to look at the big issues that we all know about, and then narrow it down to how different segments of the disabled community are impacted and why. If they’re doing a particular work within their field, why they need to be educated and be attentive to that, so that they can reach out to those members of the community that are mostly impacted by it. What they can do to work alongside those community leaders and activists and advocates who are on the ground doing the work, and they can come together and really create the change that’s needed.

Shimon:

When you’re connecting with the social work community in… Also maybe not just social workers but educators because, like you were just saying, a lot of the discrimination, even though it might not be meant that way, that often doesn’t matter because it’s the action that happens, right?

Vilissa:

Right, right.

Shimon:

It’s happening in schools and it’s often setting up young people for a lifetime of additional struggle. When you’re speaking to these groups, what’s the response like in terms of what you’re… Are they receptive? How’s that conversation go?

Vilissa:

Well, I think that when many people come to my workshops that I present social work conferences, I’m in South Carolina, so I presented it a few times at NASW chapter, in South Carolina. The South Carolina campaign to prevent teen pregnancy, they have a summer institute that they do every year. If it comes to my area, I speak at that as well. So, I get to talk to social workers, medical professionals, and teachers. I really feel that it’s so important because I think that, like I said, each of these groups have a universal understanding, but their understanding is usually outdated when it comes to teachers particularly.

I love our teachers, but the curriculum that they are taught, particularly special education, is considered to be and is, a racist and ableist institution. Some of the teachings and the practices that special ed and the broader education system, disproportionately, disadvantages disabled students of color. We do see a lot of these school-to-prison pipelines. The graduation rates of disabled students of color, the participation rates of students of color with disabilities being grossly lower than their White disabled counterparts.

They are really getting them to see how a generation that they have a normalized understanding of, and really breaking that down further and really seeing how a particular population, within that group is being harmed, is key to my educational demeanor to them. So they’re really receptive to that. I think a lot of people that come to my workshop are really looking to learn more. So that they can learn how to be better teachers or even medical professionals. I have a presentation I do about sexuality of disabled females. I talk about how disabled women are disproportionately harmed when it comes to domestic violence situation or sexual violated.

So, really understanding that if you are a medical professional, pay attention to your disabled clients and ask them more questions. And being culturally competent in making sure that how you ask questions, the materials that you provide them about their sexual health, their sexuality, is appropriate for their level of understanding to their disability types, to what they’re looking for. And not assume that the same person is undesirable or not sexual, because of their disability. So really checking one’s own misperceptions about disability when it comes to sexuality, comes to body autonomy is very important. That’s what I do when it comes to medical professionals. Really getting them to see is your practice, is your clinic, is your hospital, is your doctor’s office, is it accepting of disabled clients? Do disabled clients feel comfortable? Do you know how to engage with disabled clients of different disability types? Do you know how to relate to them?

So, really getting into really dig deep into how they interact with clients and whether or not those interactions are healthy. Whether they’re empowering, whether they’re affirmative, are they damaging, are they doing harm. And then bringing it back to social workers, I know that an issue, that I talked about with the class a couple of weeks ago, was about disabled parenting and how social workers are used to take away disabled parents rights, simply because they’re disabled. Not because of any reports of abuse, not because of any type of allegations, but simply because they’re disabled. How we need to be aware of how to systemic ableism is being used to harm to disabled parents. Or how we are being used to implement that type of ableism in that particular setting, if you are within childcare, other service, or you do DSS, CPS work.

So really being conscious of how systems have disadvantaged people, how you as a social worker or educator or medical professionals, how those systems can manipulate your role to be the agent of harm instead of an agent of change. So, really getting them to really think more critically about the role they play in the community and those that they serve in the community. To be more conscious of being able to speak up on, if they’re realizing that, you’re at a hospital and a disabled parent gives birth, you’re always called to check in on that case. Really ask the question, why are you calling me to check in on this parent when the child is fine, when there’s no allegations about this or no suspicions. Is this a founding reason or this part of ableism. So really assessing our roles that we play as professionals and the unintentional or intentional harm that may come about that if we’re not aware of certain things.

Particularly systemic barriers that really impact quality of services, the access of services, and if people want to apply for services due to probably past experiences with social workers, teacher, educators, with medical professionals, with law enforcement, etc, those past experiences really impact if somebody is comfortable or willing to go to you for support. Or is compliant, as we like to say, when it comes to their care. So really bringing some of those issues to their forefront and really get them to think critically is something that I think people take away from my presentations or the talks that I give so that they can be better practitioners, and allies or co-conspirators to disabled people.

Shimon:

I think it’s great and I think it’s… As you’re talking, I was thinking about a student that I had a couple of years ago, who did an internship at a program here specifically with the disabled community. He came back and said, “Why isn’t there a class, just about this?” Because he learned so much just at that placement that was totally outside of anything in the classroom, which often happens at internships. But I think with this population, maybe even more so, and as you’re talking, it’s just, I’m thinking more and more how it’s just such a invisible group. It’s just, right, it, even within education, even within social work education.

Vilissa:

Oh yes. Because, I remember my social program. I just got my degree within this decade. So it wasn’t too far back. We spent very little time talking about disability. Now that I look at it, what was taught, like I said, was kind of that outdated understanding. So I really think that the… What the student emphasized is very important that we do need to understand disabled people better because, our profession comes into contact with them. This is much as teachers and other professionals, medical professionals, things of that nature. So it really astounds me how the professional groups that interact with the same people on a very intimate level in some cases, are the ones who are grossly ignorant about the population as a whole.

Shimon:

Yeah, absolutely. There’s a lot of work that needs to be done, and you’re spearheading a lot of this work. You created Ramp Your Voice and there’s a lot of resources on that website. We’ll link to it in the show notes so people can go there. You also created a Black Disabled Woman Syllabus, which is linked on that website. Could you talk a little bit about that syllabus, and the work you’ve done around that?

Vilissa:

Yes. That came out of the frustration of being challenged with my particular intersectional lens by certain people within the disabled community. Particularly White disabled folks, about why I talk about race and why I talk about Black people and just be… center that. I really feel that some of that was… Some of it is racism. But also, some of it is laziness and not wanting to do the education up front of learning about different identities, different struggles within the same group.

So, that was bred out of this frustration and wanting people to stop asking me, to give them that one-on-one education when it’s easily found. So that syllabus, it’s just basically a complication of books, videos, essays, et cetera, about the Black, sometimes just generally the Black experience, and then narrow it down to Black disabled experience, and narrow it down further to be Black, disabled woman or femme experience.

So that’s been my way of providing a resource for people who may not be the most well versed about Blackness and identity in general and then making it more specific to Black disabled identity. So that’s really, the purpose of it and it’s been well received. It’s been used within academia that featured in different listings on BuzzFeed. So, it’s really in the two years of its creation have become a valid source so that people can educate themselves on Black identity, but also know that Black disabled people themselves that they’re using the resource to educate themselves about the different literature and bodies of work that have been created about their particular identities.

So that’s been very empowering to see other Black disabled people to really be empowered with themselves, to learn about their history. Because that’s one of the frustrations of disability history, is how whitewashed and the erasure of disabled people color when it comes to history. So I really felt that, it helps to bridge that gap in ensuring that a segment of a population, when it comes to the historical content of it, is not lost. So, that current and future activists and advocates have something to where they can feel the power, to really see themselves when the overall spectrum of disability history may not include them.

Shimon:

I think it’s incredibly powerful. I really do. I hear what you’re saying about, when you are part of a group and then you read something from someone else in that group, and it’s inspiring. It’s like, wait, maybe I could do this or I didn’t know about this history.

Vilissa:

Right. I know I do that all the time when I read about other racial groups or this other identities, because it’s so important for us to always be students alike and to really hold ourself accountable so that we are educated on different items, different experiences that are outside of our own. Also, so that we don’t do that unintentional harm that can come from being ignorant about those experiences. So for me, it’s a win-win. Right. You get educated and you learn how to become a better social worker, ally, co-conspirator, or just a better person in your world view of the overall human experience.

Shimon:

Vilissa, what led you to social work? You shared how you got into doing Ramp Your Voice, but you started that story as when you were a student. But what got you to social work?

Vilissa:

I majored in psychology undergrad, and I was confused exactly what would be a better career path. Would it be better to go to social psychology route or social worker? So I chose to be a social worker because I felt at times I wanted to be a clinician. I wasn’t very aware of macro support, which I became aware of in my program and that’s what I fell in love with. So my initial draws to social work was the attraction to being a therapist. I still want to be a therapist in some capacity, but more aligned with my interest in sex therapy. I want to be a sex educator because I really am passionate about reproductive justice when it comes to Black disabled women and femmes. So, I really feel that for me, hopefully within this, probably in the next five years in my career, I hope to be a sex educator and then a sex therapist so that I can bridge that gap within that realm as well.

Since I know that there are social workers who are sex therapists and do sex therapy, and I really feel that we need more connections in that area that work with marginalized or multiply marginalized groups. Because, for what I’ve been gathering through talking to Black women who are sex therapists, some of them are social workers, some of them are not, that sex therapy space is very White and very able-bodied or not disabled. So, I really feel like for me, that’s another way of filling that gap that I’m seeing and learning about and really ensuring that when it comes to the therapeutic healing of disabled people, particularly those of color, there are people who actually look like them that’s doing the work and have that personal knowledge and not just had read something within the textbook.

So for me, I feel that being a social worker is my way of seeing the gaps and figuring out ways to ameliorate them, or extinguish them all together. I think that’s been my purpose, as a social worker in the six years I’ve been doing it professionally. It wasn’t something I thought about when I first got into my program in 2010. But I’m very proud of the fact that it has evolved in this way of making change and influencing the profession and both outside of the profession so that it can become, what I know that it can, and I can be a part of that.

Shimon:

Could you talk a little bit about Disability TooWhite? Seems like a good time to talk about that.

Vilissa:

Well, yes. Well it goes back a little bit into what I was saying about the syllabus and the erasure of disabled people of color within the disabled spaces. It came out from an xoJane article that a friend of mine, Alice Wong, shared on Twitter about disabled women and beauty. It featured the faces and voices of disabled White women.

And when we talk about body autonomy, body positively, even sexuality, all those things, it is typically White voices. Typically, usually White male voices and then White female voices and then sparsely everybody else. So when that conversation was coming up about that particular article, and how it’s yet another article that does not include color, or do not include disabled female of color in that type of discussion, that’s where the hashtag came up and it went viral within the first 24 hours. It really allowed disabled people color the space to really talk about the issues within the disabled community.

And also outside the disabled community when it comes to representation, it comes to visibility and whose disabled stories matter, to society, to the media. So, I really feel that it has really gave a voice to a topic that we have all whispered about or felt frustration about. I think the phrasing of it DisabilityTooWhite, helped to synthesize all of that into something that’s easily digestible and people can really attach to, and potential around with it when it comes to the discussions that are needed. Also, in many ways pointing out the racism that is within the disabled community, and pulling out the problematic leadership. The fear of talking about race and how that can derail the movement, when we look at other aspects outside of disability, which is erroneous way of thinking. But just kind of bring it up all of those issues that I really don’t think that people were able to do publicly so strongly before.

I really feel that the hashtag has really forced open the door of conversation, that is needed to really get our community to where it needs to be. So they.. It is inclusive and accepting and welcoming and not this breeding ground of problematic nature, that expose and harm a certain group of people.

Shimon:

You’ve been sharing a lot about racism in the disabled community. I’m also thinking about another community that you’re a part of, the Black community, and disability within the Black community. If you would feel comfortable talking a little bit about that.

Vilissa:

Oh yes. I recently did an article about Queen Sugar, which is a show on OWN and it’s directed by Ava DuVernay. It has a character on there, that’s affectionately known as Aunt Vi. She has an illness within the current season Queen Sugar. There was someone who made a comment about, “We want Aunt Vi to be whole. We don’t want her to be sick. Can you reverse her illness?” And Ava gave an incredible answer to that, by the saying that illness is a part of life and you know there’s nothing wrong with Aunt Vi being ill. And that really sparked something within me and how the Black community look at disability. The Black community is known to be very…a welcoming community.

But also we have some ideas about certain identities within the community that are problematic. When it comes to disability, it’s a complicated thing because in my piece, I know that how Black people and disability and Black disabled bodies have been viewed since Black people have been in America. When it comes to slavery and how slave masters or slave owners have either exploited or abused Black disabled slaves because we have to think about these system of slavery with it being system of profit, chattel slavery.

We have to have produced labor to be considered to have value within that system. If you have a slave that isn’t able to produce value or produce labor, then many slave owners considered them useless. So we have to think about the historical aspect of how Black disabled bodies were treated. We also have to think about the religiosity within the Black community from the Black church is very prominent entity within the space. How religious teaching view disability, how religious teachings view disability as something to be healed from, to be cured, and how if you have disability with physical, mental illness so and so forth, we need to pray it away or pray very hard for Jesus and God to heal you. So, you know, there’s a lot of things within our community that are toxic, that we don’t really recognize as being toxic.

That really impacts how disabled people view their bodies. That was some of the pieces that I brought up when it came to that particular example, of how we need to see Black disabled bodies as whole. How we’re not broken because we have illness or we have a disability. We have mental health diagnosis. We’re not broken people. And it really called out some of that ableism that greatly isolates, alienates, and make people within that space alone. We have people who tell you that, they can’t handle you or they can’t see you “suffer” and they can’t see you “struggle.” How does that make one feel? So, I really think that within the Black community, really forcing us to take a hard look at how we unintentionally harm each other at times. Also, at times it is intentional ,and the impact of that and really having those hard conversations, that there are people who are literally being harmed by that, and not really feeling welcome with any Black spaces.

I know that me and several Black advocates say, we don’t really feel welcome within the disabled community and we don’t really feel welcome within the Black community. So where can we feel welcome? That’s the reality for many of us. There’s parts of each group that we belong to that is not loving, does not see us in our entirety as humans, as disability being a part of that human experience. It’s not a defect, it’s not an imperfection, it just a way of life.

I think that’s the main thing that I really want to bring to the Black community and understand that, this is another aspect of Blackness as you know, Black womanhood, Black family, being a Black femme. These things all matter to the Black experience. You cannot cherry pick what parts of the Black experience that you are most comfortable with and you’re saying that you are advocating for the liberation of all Black people, but you got to be a certain type of Black person. That’s not feasible and it’s not rational and what’s important it’s not going to be tolerated.

So I really felt that when it comes to the Black community, just really calling our community out, and really forcing them in seeing how they too can be harmful, and what they can do to not be harmful and to create a more safer inclusive space, for Black disabled people to be in.

Shimon:

I really appreciate you sharing all that and coming on the podcast as we’re getting towards the end here. I just wanted to give you the opportunity to share any information really with the listeners that you want to get across that we haven’t talked about.

Vilissa:

Well, like I said, I do writing, I do public speaking. I now have a agent that represents me as a speaker, so I am available to speak at your organization and your school, university facility, et cetera. If you want to know about disability from an intersectional lens or if you are a person of color, activist, or organization and want to know more about disability from that lens, so that your work can be more inclusive, I’m definitely available for that. I’m also starting a Patreon in July, where I can do more intimate type of writings about my personal experiences and just the way that the world… The way I view the world and how the world views me. That’s just my way of expanding my writing, and just really, outside of those two things, just really doing what I can to really reach our colleagues so that they can do better.

I really think that this is now the time, particularly in the political atmosphere that we are in right now, for us to really step up our call for action as a profession. To really ensure that the work that we’re doing in protecting people’s rights and advocating for those changes, we are advocating for the right things that will definitely improve the quality of life and opportunities and reduce the barriers of those marginalized identities. I’m always open to reaching out to people who would like to seek me out, or seek other activists or advocates out, who’s doing this work and who they want to learn from.

So definitely reach out to me. I know you’ll put my info in the show notes, but definitely, anyone who’s interested in furthering this conversation or learning more about some of the things that I’ve touched on, then definitely reach out to me. I’ll being willing to work with you as a consultant, as a writer, speaker, or whatever ways or means that work best for you.

Shimon:

Well, thank you again Vilissa for coming on the podcast and thank you for doing the work.

Vilissa:

Thank you so much. It’s so great to talk to social workers. This is my first social work specific podcast. So I’m real glad to be on yours as my first one.

Shimon:

I feel honored that you’re, that this is your first one.

Vilissa:

It is.

Shimon:

Thanks again.

Vilissa:

Thank you.

Shimon:

Thank you for listening to Doin’ The Work: Frontline Stories of Social Change. I hope you enjoyed the podcast. Please follow on Twitter and leave positive reviews on iTunes. If you’re interested in being a guest or know someone who’s doing great work, please get in touch and thank you for doing real work to make this world a better place.