March is Women’s History Month, Developmental Disabilities Awareness Month, Autoimmune Disorders Awareness Month, and Cerebral Palsy Awareness Month. That’s a lot! So as we close out on March 2022, AWN is highlighting the voices of women of color community members, advocates, and leaders with cerebral palsy and autoimmune conditions. We present a roundtable with Sarah Rizzuto, Rahnee K. Patrick, Terri Lynne Hudson, India Harville, Zahra J. Brown, Sara M. Acevedo, Carla L. Lewis-Irizarry, DeVan L. Hankerson Madrigal, and Jen White-Johnson.
AWN: Can you describe your professional work, advocacy, activism, or scholarship?
India Harville: I am a disability justice activist and educator and my work centers decolonizing the body as a pathway to embodying disability justice principles. I am an inclusive dancer, somatic practitioner, bodyworker, and all of that informs my disability justice activism. I work with universities, social justice nonprofits, grassroots organizations, and individuals, and I have been able to do this work all over the country and internationally (before Covid; now it is all online).
Terri Lynne Hudson: I’m primarily an actor and multidisciplinary artist. I also put a lot of my time and energy towards activism and advocacy for disabled actors in Chicago (and ideally everywhere). I have a BA from University of Chicago in General Studies in the Humanities (Theatre, Film and Dramatic Literature focus) and have studied at Second City, State Theatre School, Alliance Theatre School, Acting Studio Chicago, and elsewhere. I was born with spina bifida and am mobility impaired, ambulatory with braces and an occasional wheelchair user.
Jennifer White-Johnson: I’m Jen, a Disabled and Neurodivergent, Afro-Puertorrican Artist, Design educator, wife, and parent of a beautiful 9 year old Autistic human. I live in Baltimore, Maryland. I was born in Washington D.C. and grew up in Prince George’s County, Maryland. My visual work and research focuses on the intersections of Race, Disability, and Ableism, bringing together personal experience, creativity (through design and photography), and social justice to explore issues of explicitly ableist visual culture and dismantle them. I have a love for making kid-centered crip/disability artwork and design, which led to photo zine-making, and recently published an essay entitled “From the Black Anti-Ableist Diary: A Tribute to My Black Disabled Son From a Black Disabled Mother” that can be found in the new book The Black Experience in Design, Identity Expression and Reflection. After teaching for 10 years at Bowie State University, I’m currently guest lecturing at the University of Minnesota’s School of Design, where I teach a course entitled Special Topics in Design Justice: Disability, Racism, and the Intersections of Design Justice.
My creative practice shines best when I can infuse design justice, disability justice, photography, zine making, and art activism to center Neurodivergent mothering, caregiving and joy as important acts of resistance in a society that so often devalues disabled communities.
I have a love for making kid centered crip/disability artwork and design. I work and play best with others that believe in a community building approach to activism and design. I love how art and design can express and uplift themes of intersectionality, and be used as a blueprint to create alternative support structures. I love hugs, headbands, music (I’ve been listening to lots of Yebba), and I dream of owning a Dalmatian (my son’s favorite) or a Labradoodle soon. You can find me doing lots of Disability advocacy artist’s talks and presentations online or in-person at schools and universities, as well as leading poster/zine-making /design workshops too.
Zahra J. Brown: My advocacy and activism have components of self-advocacy and self-activism. By this I mean that I am not attached to official institutions or organizations that are involved in broad-based advocacy/activism around discourses of gender, disability, and race. I am more self-directed, in the sense that I use different social media platforms to engage these conversations.
Presently I use YouTube, TikTok, Facebook, and Instagram to engage conversations around disability (hard of hearing and cerebral palsy), gender, and sexuality. I pose questions that stir up awareness as to how homophobia and disability function. Using my own lived experiences of being a cisgender black woman who does not have cisgender privilege, I enter conversations with people in and outside Canada, who share common interests. I find that the uniqueness that I bring to conversations about gender, race, disabilities, and my resistance to all forms of binary representations continues to attract significant interest among people who are working for change.
Recently, I have been using my own journey through mental health to bring awareness to the fact that mental health intersects with these already overlapping and complex identities of race, disability, gender, and sexual orientation.
I use poetic words, creative writing, creative postings on social media to insert myself, let my thoughts known and engage conversations with ordinary people. A key learning from the George Floyd tragedy is that there are different ways of engaging in advocacy and activism. That event has galvanized social media platforms across the globe, enabling the building of networks and solidarity with multiple justice movements in support of resisting Anti-Black racism.
After the completion of my master’s program in Disability Studies, I began paying attention to the question, “How did I really manage to navigate the multiple barriers as a black girl-child living with cerebral palsy and hard of hearing, when very little was known about cerebral palsy in either Black Studies or Black communities?” One of the starting points for me was my understanding that cerebral palsy as a unique disability, gained much visibility in Canada through the case of a white female child who was murdered by her white dad. I could not find a place in those conversations that were voiced by white justice advocacy movements.
My thesis on “Ableism, Intersectionality, Power, and Knowledge: The Complexities of Navigating Accommodation in Post-Secondary Institutions,” is engaged by students and professors alike, who use my work to teach and engage in academic conversations. While I have been invited to enter conversations, I do not see this engagement with the University as advancing my scholarship in a way that I want. Instead, I see it as gaining experience as I continue to search for ways to advance my scholarship.
Sara M. Acevedo: All of these elements intersect and inform each other in my life in the following ways: I am a scholar-activist and use a disability justice lens to guide my approach to action research. The bulk of my work focuses on neurodivergent autonomy, self-governance, and grassroots leadership – all of these experiences cut across intersecting struggles. I am an educator and apply the principles of liberatory pedagogy in my teaching. I use Freire’s (1985) concept of “critical consciousness” to unveil and decenter unbalanced power dynamics in the creation and dissemination of knowledge in and beyond the classroom. I do so by unsettling neoliberal education’s competitive culture, and encouraging cooperative learning and participatory meaning-making instead. I also draw from bell hook’s (1994) ideas in Teaching to Transgress to challenge and subvert intersecting systems of oppression that disproportionately impact racialized, gendered, and disabled bodyminds; especially those subject to disciplinary schooling conceived as a “civilizing” project. I teach from a critical disability studies perspective, which I understand as a liberatory transgression against any attempt to seize and “civilize” divergent bodyminds, cultures, kinship, and knowledges. Overall, my curriculum design aims to unveil existing power structures and their implicit role in the reproduction of inequity and injustice in the practice of education (and beyond). To that end, I teach students in the applied professions to recognize and interrupt discourses and practices deeply rooted in white supremacy, anti-black racism, settler colonialism, ableism, and cisheteropatriarchy.
The significant amount of care and emotional labor I am expected to perform as a disabled Mestiza, immigrant woman committed to liberatory education, engaged scholarship, and institutional transformation is not something I am always happy or ready to engage with, yet it is something I have to face daily. Stepping away from this work at my convenience is not something I get to do, nor do I feel ready to either.
Regardless of how much passion I have for all of the issues – and I really do harbor a level of passion and care for this work that often puts my needs last – I have to confront them as I learn to survive every day as a disabled person who also lives with chronic illness and pain. I often wonder, how many struggles can I balance before crashing? How many can I juggle beyond “just” surviving? How many can I take on while actually living a fulfilling and happy life? My point here is that historically, Euroamerican societies have never expected disabled people to survive, let alone lead dignifying and joyful lives, so the dominant narrative often instructs us to conform and be grateful to have survived. Yet we deserve and are entitled to live fully and meaningfully, to enjoy and draw pleasure from our bodies, and what we do everyday beyond “just” surviving — whatever that means for each of us, which should be only our decision to make.
Carla L. Lewis-Irizarry: I am Adjunct Lecturer/Professor at City University of New York (CUNY), Brooklyn College. I have been teaching for 10 years with the department of children and youth studies. I have taught courses in public administration, sociology, leadership, and disability studies. I also guest lecture at other colleges/universities on disability rights and social justice issues geared towards those with disabilities and their families. Currently, I am a certified cannabis educator where I started my own cannabis consulting firm. In the cannabis industry my main focus is to teach and train individuals about the healthy way to understand cannabis and consult on practicing a healthy lifestyle. I am also a peer educator on LUPUS having spoken with the Senate and Congress in reference to state and federal funding and policies.
I advocate for individuals with disabilities and their families in understanding their rights and navigating a system that a lot of times ignores us. I have written and presented at conferences as well as sit on many non-profit boards and organizations.
DeVan L. Hankerson Madrigal: I am the Research Manager at the Center for Democracy & Technology (CDT), a non-profit organization which promotes democratic values by shaping technology policy and architecture, with a focus on equity and civil liberties. My advocacy work has always been grounded in a desire to improve technology access to ensure that more people share in the benefits of technological progress. This has included work highlighting the effect of localized data deserts in and around rural and high-poverty areas, resulting from lack of broadband access for innovation in artificial intelligence around data diversity. I recently co-authored an article that explores systemic and structural ableism in education. Importantly, it addresses limitations inherent to disability rights law as a means of bridging the digital divide (Hankerson & Brown, 2022).
In the past year, I collaborated with EdTech policy advocates at CDT to raise awareness about the increasing use of student activity monitoring software and school-issued devices, ushered in by remote K-12 education to address disparities in technology access. One of the major insights from this project was the disproportionate surveillance of students whose sole computing device was school-issued; these students were often from low-income households. I have also written about the impacts of mis- and disinformation around communities of color and across gender identity. This work draws attention to many of the unresolved questions around the intersections of online disinformation, race, and gender. These days, I am co-leading research that looks at the broader implications of targeted race- and gender-based online harassment and abuse for political engagement. In addition to psychological harms, I explore chilling effects on the political participation of women, specifically women of color. In the upcoming months, I hope to continue thinking about and producing scholarly (and non-scholarly) work that articulates the direct links, in the electoral context, between targeted misogynistic and racist online attacks aimed to undermine and negatively influence public perceptions about these groups’ ability to govern and the political suppression of women and other marginalized people.
Rahnee K. Patrick: I am in charge of a government agency in Illinois that is to increase the employment rate of people with disabilities, give funds to centers for independent living, educate deaf youth and youth with visual impairments, and provide in-home services to people with HIV or traumatic brain injury or other types of physical disabilities. I have been an activist in creating a more equal balance between home- and community-based services versus institutional care plus I have written about being an Asian American with a disability and the impact of aggression in management.
Sarah Rizzuto: I teach at a university in Connecticut and as a professor who has cerebral palsy (CP) and uses a power wheelchair, I’m constantly advocating for access, whether it’s accommodating students or implementing a Disability Studies course. I’ve taught Introduction to Creative Writing since 2013. I emphasize thinking outside the clichéd box and encourage a community of acceptance and interdependence. Students come to understand that I need desks arranged in semi-circles instead of rows so I can navigate my classroom easier. Being upfront models inclusivity. My Disability Studies (DS) class also came to fruition in 2013, through the Women’s and Gender Studies program. Although DS was taught prior to my class, it had been well over ten years since such a class was offered on campus. So, I was excited and supported in teaching it. Although the class was canceled after a year, we hope to bring it back in the near future.
These days I’m teaching remotely. My university has honored this request even though mask mandates are being lifted soon. During spring 2023, most classes are expected to be in-person, but the chance to teach virtually has already been extended to me. This past semester, I audited a Trans Studies class, which is the first time that specific course has been available. My professor hosts the university’s podcast about diversity in higher education. In Trans Studies, I saw many overlaps with the struggles of the disability community. Thus, as part of my final project, I decided to be involved in a podcast episode focusing on disability and transness. I reached out to someone who is trans as well as neurodivergent. We had an on-air conversation about visible and invisible disabilities, being trans, advocacy and art. The podcast is a wonderful platform for sharing insight.
AWN: What would gender justice and racial justice in the disability and chronic illness communities look like?
DeVan L. Hankerson Madrigal: I’ll start off with a joke, that’s not actually a joke… It would be nice (maybe more than just nice) if there was more visibility and awareness (read: de-stigmatization) about chronic illness that reflected the experiences of people of color. And if anyone knows the editors of Arthritis Today magazine, tell them they missed their chance to feature me on the cover (the magazine was discontinued as of Fall/Winter 2020.) But seriously, there are a couple of vectors of change I think are worth highlighting. First, the narratives around chronic illnesses in communities of color largely blame people of color and low- and middle-income people for poor health outcomes, especially around diabetes and hypertension. (I don’t have these conditions, but they are commonly discussed in the chronic illness community.) The conversation tends to stop there as the discourse over-emphasizes personal accountability (i.e. focuses on dietary habits or habits of physical activity) and does a poor job of recognizing medical institutions’ culpability in providing low standards of care for middle- and low-income communities over the course of generations as well as low health access, inappropriate health education and health interventions. Second, gender justice and racial justice in the chronic illness community recognizes that healthcare is a human right, it looks like a comprehensive health care system that makes public health paramount (sometimes referenced as universal healthcare). I, for one, am sick to death (pun intended) of the legal, social, and political license white communities take, as they impose a system on us all that allows for white hoarding of our shared resources (e.g. tax dollars that disproportionately service wealthy white enclaves). I’ll draw upon the words of St. Louis Rep. Cori Bush (D-MO) to say that gender justice around chronic illness looks like, in her words regarding public health legislation, “commitment to ensuring everyone in this country, and particularly our Black, brown, and Indigenous communities, have the medical care they need to thrive.”
Rahnee K. Patrick: Gender justice and racial justice in the disability and chronic illness communities look like a community that has no objectification and violence toward human beings of color with intersectional identities.
Terri Lynne Hudson: Equal access to compassionate, just diagnosis and care. I do know that many women and people of color aren’t believed when they complain of chronic conditions and have problems accessing care and treatment, and that we’re also more likely to not have access to adequate health care as a baseline. I have an odd sort of advantage in that I was born with an obvious physical disability and also had the strong family autoimmune history, and that makes medical professionals somewhat more likely than usual to take me seriously about complaints that I know get ignored in other people in my demographic. I probably just also have more experience communicating with doctors, and I both know I need medical care and am not afraid of firing a doctor and asking for a second opinion. It may sound odd to count my disability as an advantage here, but it really does help to have experience dealing with specialists.
It also looks like economic justice, housing justice, food justice, and justice across the board of all the ways in which marginalized genders and races are oppressed, because all of those go to base quality of life, and having a lower quality of life with more obstacles to fight with is only going to exacerbate other issues someone might have.
Zahra J. Brown: First, we need a new epistemology to ground gender justice and racial justice in disability communities. We cannot depend on epistemologies that privilege disability, while at the same time erasing it. We already know that knowledge and power function in ways that create understandings of what might be said about a particular topic, what is excluded and what is foreclosed upon.
We need a knowledge base that prioritizes the experiences of disability in all its complexities before we can even begin to speak about where and how it overlaps and intersects. In my thesis, I supported Black disability scholars who argue that both disability studies and Black feminist studies need each other. The idea is that Disability Studies can benefit significantly from the way in which critical Black feminist analyses throw light on how White supremacy functions with regards to blackness – both blackness as it pertains to the body of the Black woman, as well as blackness as it pertains to the body of the Black disabled person. In other words, gender justice and racial justice in the disability community must have its own epistemological framework that is consistent with its questions, its problems, and assumptions.
I imagine a kind of gender justice and racial justice that would be able to penetrate fields such as education, medicine, theology, philosophy, cultural studies, sociology, with new understandings and new knowledges that resist, or even replace, the supremacy of Eurocentric epistemologies about race, gender, and disabilities.
I dream of an inclusive environment where disability issues are not treated as back burner issues or afterthoughts in conversations about gender justice and racial justice. Since Black feminism has already provided us with the tool of intersectionality as a way of conceptualizing and working through the complex and overlapping identities, I see possibilities for a path forward. However, this necessarily requires, as I have stated, building a new epistemology. We cannot afford to make the mistake of limiting the scope of this new epistemology to the academic institutions, where the knowledge-power games continue to exclude, erase, and manipulate ideas of disability for purposes other than the wellbeing of communities of peoples with disabilities. We must include knowledge from the ordinary people, such as those on the streets, in homes, residences, and institutions. Certainly, this requires new forms of knowing that are grounded in understandings of justice for and the wellbeing of peoples with disability.
India Harville: Disability and chronic illness communities are having a reckoning around racial and gender justice. There is so much work to do! To me, racial justice would look like centering the leadership of disabled BIPOC, a radical overhaul of our medical system, advocacy work for BIPOC folks navigating the medical-industrial complex, research on conditions that disproportionately impact BIPOC/how conditions show up in BIPOC bodies (because we often present with different symptoms than white folks). It’s important that we grapple with gender justice as well, which includes affirming care for trans, non-binary, and genderqueer folks, a recognition that gender impacts symptom presentation, and having more diversity of genders available as providers. Of course we also need to look at these things intersectionally, addressing the issues that create health disparities and protecting multiply marginalized people who are at the most risk.
Sarah Rizzuto: It’s difficult to address gender and racial justice when many nondisabled folks, even white folks, tend to see disability (or possible indicators of disability) before anything else. In my experience, disability trumps all; one is discriminated against based on their disability no matter where they identify on the gender spectrum, especially if their disability is easily visible. And if the person’s disability isn’t visible, then there is a much higher likelihood that one would be discriminated against based on their race and/or skin color. It almost seems “common denominator” to say gender and racial justice should focus on one’s work ethic and talents. Justice would also look like not assuming certain voices aren’t taken less seriously than others. And, of course, equal pay would be expected. Ableism, racism, and sexism are three of the most oppressive prejudices in society, and too often are inexorably linked.
Carla L. Lewis-Irizarry: With the systems at play where our society can care less about individuals with disabilities, so, honestly I do not know what gender and racial justice looks like because our society has worked really hard to keep us quiet and stay in our lane as a way to deny our many freedoms that our able-bodied counterparts have from day one. First, having open spaces like these (roundtable discussions) is a great way to start. I believe if we speak up more about the injustices individuals face with disabilities and continue to spread awareness on these tough issues. There cannot be a viable solution or recommendation if we do not talk about these injustices we face daily. We definitely need to be more vocal and have our community leaders step up and create these spaces where people with disabilities are able to share their narratives and get the necessary resources that are needed.
Sara M. Acevedo: As I have mentioned above, WOC are disproportionately expected to perform emotional and care labor in all lines of work. Social movements and other community organizing spaces aren’t the exception. Gender justice within disability and chronic illness communities/shared spaces must begin with uprooting and decentering a cisheteropatriarchal belief system that remains embedded within our practices. Consider, for instance, spaces where collective decision-making can be implemented to draft and set in place criteria for assessing how gender and other binaries are reproduced in the division of labor within our organizations — from the most mundane tasks to the more intricate logistics of event organizing, for instance. Activists and organizers often draw on critical reflection, which is a critical component of anti-oppressive praxis. Organizing for gender justice within our own communities of practice can take a similar form, asking questions such as, Who is performing the most draining tasks and how can these tasks be shared? Is there a shared leadership structure that can be called upon to redistribute tasks? How can interdependence be used as a needle to thread “care networks” (Piepzna Samarasinha, 2018)? How can mutual aid sustain varying needs and levels of support to perform specific tasks? Racial injustice is inextricably intertwined with gender injustice (Crenshaw, 198), and must be equally addressed by uprooting interconnected systems of oppression at play within our organizations and leadership structures. Confronting unexamined privilege in the face of white supremacy and settler colonialism within the disability and chronic illness communities is to confront racial injustice. All the same, exposing racial and gender injustice will inevitably lead to uncovering the movement’s inner hierarchies and their role in rendering some disabilities invisible – including chronic illness resulting from autoimmune conditions.
Jennifer White-Johnson: Embracing that your bodymind can be a radical space of softness and resistance at the same time. As Audre Lorde said, “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.” We can accept the authenticity of pain and pleasure as power. That we can build, create, and exist in our own worlds that have been deemed inaccessible to us – that we can be unapologetically disabled. We know the system isn’t always accessible and equitable when a 10 year old Autistic kid can be bullied and commit suicide or be murdered as a result of a racist and ableist educational system – Isabel Trichenor, Stephon Watts. What resources are black and brown communities putting in place to save our most vulnerable and oppressed people? Whose black/brown futures are we really saving? These are stories we don’t hear about until it’s too late. Gender/Racial Justice/Equity means not investing solely in capitalism, but investing in collective access and caring for the lives of the most vulnerable.
AWN: What autoimmune disorder do you have?
Rahnee K. Patrick: I have psoriasis and psoriatic arthritis.
Jennifer White-Johnson: I was diagnosed with Graves’ Disease when I was 21; by the time I was in my 30’s, it transitioned to Hashimoto’s Thyroid Disorder.
DeVan L. Hankerson Madrigal: I was diagnosed with aggressive adult Rheumatoid Arthritis (RA) when I was 11; RA is an auto-immune disease. I have sustained bone damage in my right hand and wrist resulting in a loss of function in my hand and my wrist. I also experience bone and joint fatigue in my left hand now, because I have become more left-hand dominant over time. I have had fibromyalgia in the past, painful nodules on my joint connections (elbows, knees, ankles), and there have been times in my life when I was unable to walk due to extreme inflammation.
Sara M. Acevedo: Doctors are still determining what I have. They first thought it was MCAS [mast cell activation syndrome], but discarded that a few months ago. Nothing is certain at the moment, but my symptoms are likely related to a neuroinflammatory condition. I also live with fibromyalgia, and, according to a study published in 2021 by researchers at King’s College London, “fibromyalgia is a disease of the immune system” (ScienceDaily, 2021, para. 2).
Terri Lynne Hudson: That’s an excellent question! I currently have no solid diagnosis past “It doesn’t seem to be lupus.” This is ironic because lupus killed my mother and runs rampant on her side of the family, so a lupus diagnosis would make more sense than “you are a medical mystery.” I have a spotty low positive ANA [antinuclear antibodies] and am under a rheumatologist’s care, and I have a couple of conditions that are generally comorbid with autoimmune disorders that aren’t autoimmune disorders themselves – namely, subclinical hypothyroidism and thalassemia minor. I don’t seem to have any of the easily recognizable lupus symptoms, and the handful of complaints I’ve had could all just as easily be attributed to me being menopausal. I’m not currently on any immunosuppressant medications because I don’t have a diagnosis; I’m only being medicated for my mild high blood pressure and my hypothyroidism.
Carla L. Lewis-Irizarry: When asked to write this blog for AWN, I was deeply honored not because it’s women’s herstory month, but hearing the narratives of BLACK women with disabilities and featuring women of color with autoimmune disorders was something I wanted to be a part of. We all know at times that writing about yourself can be very difficult. At first, I would write about myself about having Congenital Glaucoma, Lupus, Raynaud disease, Neuropathy, and battling Cancer twice. Then I saw the Oscars last night. On live television, someone thinks it is funny and insensitive to make a joke about it. I said to myself, it is not about me; it is about my Black Sister having to go through the pain and struggle when hearing you have a medical condition or disability that is not of your control. The pain and hurt I saw on Jada Pinkett-Smith’s face was enough for me to be angry and say enough is enough of the abuse that BLACK women face in this society.
The Oscars are supposed to celebrate those who work hard to bring their talents and beauty to the golden screen. But what we saw, or what I saw, was once again no one protecting us from the abuse that not only men believe they are the supreme beings of the world, but society as well. When Will Smith walked up on that stage and slapped Chris Rock on live television and said, “Keep my wife’s name out your f%^& mouth,” it gave me chills and relief. Now the world could see that there are individuals like Mr. Smith protecting his beautiful BLACK wife and many others like myself. They, at times, suffer in silence because no one truly understands when having an autoimmune disorder can be very hard to deal with.
Having Lupus was the least of my worries. I was first diagnosed with lupus at 21, being a new mom with a disabled child and raising my teen cousin. As with many autoimmune diseases out there, I had many crossover systems. When first diagnosed, I was told I had RA [rheumatoid arthritis] to possible fatigue syndrome. My symptoms quickly escalated, and before I knew it, I was on dialysis. My kidneys were no longer functioning normally, from having hip replacement surgeries to developing Raynaud’s disease, neuropathy, and Cancer (beating it twice). One day I had a reality check that hit me so hard that there were times I was not going to make it—worrying and wondering if I would ever see my son grow up.
The first couple of years were challenging; I was a full-time student, working two jobs and trying to get a handle on a new illness that could result in death. You could imagine the fear I felt because no one knew what lupus was or what was their cure for this silent and deadly disease I must now face. From dealing with my legal blindness to having lupus, telling my story has prompted me to become an advocate. Still, some may say being an advocate is not just fighting or speaking up for others but fighting and speaking up for yourself and your needs when the world feels you do not have a place here. As a Black disabled woman, I want others like me or who look like me to be able to share their stories. Advocacy allows me to share my story and struggles as well.
My passion for becoming an advocate and an educator shows me that we do not need a title. We need to care. People would instead follow someone with a heart than those with a label. So, speaking and supporting the Smiths is what I aim to do, and many others who feel they need a voice stand up and say, “I am here for you and with you, and we can do this together.” Some may say that this is very noble of you.
AWN: How can other people of color with cerebral palsy or autoimmune disorders connect with or learn more about the disability justice movement?
India Harville: There are so many ways to learn more about disability justice and to connect with the community! It all depends on what you like and what is accessible to you. You can search #DisabilityJustice and learn about disability justice through social media. If you like to read you can check out books like Disability Visibility: First-Person Stories from the Twenty-First Century by Alice Wong or Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha. Some podcasts to check out include Disability Visibility or Power Not Pity. There are also disability justice community events online, like the upcoming training Senior and Disability Action is sponsoring for newly disabled folks who want to learn about disability justice.
Sarah Rizzuto: Nowadays it’s easy to simply say, “Google disability justice movement or disability pride,” but what if you’re the only disabled person in your family and you’re still not mainstreamed in all your classes? To seek the disability movement or feel pride when our families, school systems, and communities are uninformed at best, is hard. My overall answer is to be active in disability online spaces, speak to your disabled elders, and ask a ton of questions. But how does a person know what they don’t know? I’m not the only disabled person in my family. My sister has CP too and my father was diagnosed with heart disease in his forties. My mother has arthritis. I used to say we were one big happy disabled family, that is, until my dad died from cancer this past year. But honestly, the disability movement and pride starts at home. My parents didn’t know about disability pride, but they took pride in their children’s lives, disabled or not. And, unfortunately, I think that’s rare. Although I was in a resource type room in high school, I liked it because I got homework done. I was an outgoing straight A student who had no problems with teachers. That’s why I’m a teacher now. But what if I were the only disabled child at home or in class? What if I were bullied and apathetic toward school? Where’s disability justice and pride when I need it most? Why don’t we teach disability history and culture from kindergarten to high school? Why don’t we discuss communal care, helping our aging neighbors? The best question is, how can the disability justice framework support disabled people of color and how can this framework be integrated into our everyday lives?
Rahnee K. Patrick: People of color with autoimmune disorders can connect with the disability justice movement by engaging in art, music, blogs, or magazines from organizations like Sins Invalid. I would also try to spend time with people with autoimmune disorders and explore how disability justice might be a comfortable perspective to explain the experiences of ours.
Sara M. Acevedo: There is a vast array of grassroots resources out there accessible to all (none hidden behind a paywall). All the disability justice practitioners and organizers I know, starting with the founders of the movement to newer generations of activists, have all made their work available online. Aside from a wide variety of content that is free of charge, there are extra resources such as books and films that anyone can purchase, for a much smaller amount than any other commercially available resource. Compensation for one’s work should not have to be justified, yet considering the history and high rates of unemployment within our communities and contemporary forms of socio-economic precariousness, it is important to point this out.
Terri Lynne Hudson: As someone who’s both born disabled and an autoimmune patient, this can be tricky. Not everyone who’s disabled is chronically ill and not everyone who’s chronically ill feels comfortable identifying as disabled. This can also move into the visible versus invisible disability discussion, because those experiences are very different. I’ve spent most of my life trying to convince people that I can do things, versus trying to convince them that I can’t because of pain and fatigue, and people tend to assume I have pain and fatigue I don’t have, while disbelieving other people who don’t have obvious physical differences or assistive devices. I know this answer is sort of indirect, but it goes to what to be prepared for when connecting with those communities and what to be sensitive to and aware of once you’re in those spaces.
As far as practical advice, Google and Facebook are your friends. I’ve connected with so many disabled and chronically ill POC on social media and it’s been a beautiful and validating experience to be able to connect with that community.
Zahra J. Brown: Since cerebral palsy covers such a broad spectrum, it is difficult to speak in universalizing terms about ways of connecting with or learning more about disability justice movements. Having said that, I believe that there are certain fundamental issues specifically related to people of color with disabilities, which must be attended to before any conversation about justice movements.
First, we need to assess how shame functions in communities of color with regard to the disability of cerebral palsy, since this will affect willingness to be involved in conversations as well as showing up in spaces outside of the home.
Secondly, much work needs to be done to enable people of color with cerebral palsy to answer the important question – Who benefits? In other words, people of color with these disabilities must be able to understand how this movement might benefit them. That the disability justice movement is largely a white justice movement, is not in itself a problem that cannot be worked with. What this means is that we must establish a people of color disability epistemology that I referred to before, which can resist the dominance of a white-centric disability epistemology. I believe that this is where we need to focus.
Thirdly, the emphasis should not only be on the idea that people of color connect with the disability movement only to learn from it. It should be more about connecting to interrupt some of its assumptions and share with the movement other ways of knowing and being.
Carla L. Lewis-Irizarry: The best answer I can give is, do your research about disability rights/justice. Attend workshops and lectures, which is now easier because now there’s a huge online presence especially since COVID began. Prior to COVID, many people with disabilities were not able to participate in many in-person spaces. I will also say speak with friends and contact your local disability and non-profit organizations and see what they are doing in the communities in speaking and spreading awareness on these issues.
DeVan L. Hankerson Madrigal: People of color with auto-immune disorders can connect with the disability justice movement by first acknowledging that even though our illness may not be as visible as others, that does not mean that our pain is unimportant or that we can’t be in community with people with visible disabilities. The allure of passing, hiding an illness, and “just coping” to appear normal is really attractive but it is also isolating.
Jennifer White-Johnson: The 10 Principles of Disability Justice have been monumental in my evolution as a Disabled artist and educator. The principles that resonate the most with me are Collective Liberation and Intersectionality. To once again quote Audre Lorde, “There is no such thing as a single-issue struggle because we do not live single-issue lives.” Living with a condition that brings on bouts of chronic fatigue means that my body recognizes when it needs rest; living with a Neurodivergent mind allows me to creatively express my stories, holding space for my artistic craft. We must continue to open ourselves to the intersection of our various identities, paths, and our unique stories. My hope is that these stories will make the world more accessible.
AWN: What do you wish white people with cerebral palsy/autoimmune disorders or men with cerebral palsy/autoimmune disorders would understand about the intersected experience of being a woman of color with cerebral palsy or autoimmune disorders?
Rahnee K. Patrick: I wish that white people with autoimmune disorders would understand that the existence of an intersected experience of being a woman of color with an autoimmune disorder does not negate or take away from the experience of community and rights of people with autoimmune disorders.
Terri Lynne Hudson: They should know that a lot of us have developed a distrust for the medical industry because of prior bad treatment; that systemic oppression and discrimination work against how well we can care for ourselves in many ways; that not everyone has the same access to care, or to preventative and alternative treatments; and that professing pain is not automatically drug-seeking behaviour.
India Harville: I wish that white people with autoimmune disorders realized that even though they may have experienced challenges with getting diagnosed and that they have had to advocate for themselves inside of a medical system that doesn’t take care of most people, they cannot compare that experience to how hard it’s been for me navigating all of what they navigated plus the intersections of racism and sexism. The amount of medical trauma I have is staggering because of how racism and sexism have played out in my care. So please don’t think that you can speak for me or that what you say even applies to me. Also, I wish that white folks wouldn’t try to discredit my symptoms because they are different from theirs or what they learned about the condition from the racist, sexist research that has been done on the condition. Just stop.
Sarah Rizzuto: As is made clear by the January 6th insurrection and seemingly endless shootings of people of color, some of whom have been disabled, too many white people are racist and believe in the ableist notion of survival of the fittest. Women of color with cerebral palsy are no different than other women, but obviously, thanks to sexism, women are seen as inferior. Having a disability and being of color doesn’t help our causes of disability justice and pride. It feels too basic, but I wish people understood that disability and darker skin are not a mark of misfortune. We’re capable, strong, and vulnerable despite your lackluster stereotypes! We need support because of systemic oppression, not just because of our disabilities. All our glass ceilings aren’t the same; some provide a good view of cement. It’s hard for me to pin down my thoughts on white people because I’m adopted from India. My mom is English and my dad was Italian, so as I stated, too many people are racist, but we shouldn’t thrust that stereotype on every white person, the same way disabled POC don’t wish to be subjected to tropes or caricatures of expected behavior.
Zahra J. Brown: I wish they would understand that their stories are not essentialized stories for all, and that race and gender do matter. At the same time, I would not want to spend my valuable time trying to educate them. I am not convinced that the change that I seek really depends on their acting in my interest. In other words, while I wish they would become aware of these issues, I will not count on their awareness to produce the required change. My experience as a Black woman teaches me this wisdom.
Sara M. Acevedo: Speaking specifically about productivity demands and dehumanizing expectations of neoliberal capitalism and how they manifest in the world of higher education, I wish white men with autoimmune conditions would understand that “life-work” balance is an illusion for many WOC in academia (and act) in solidarity with us, knowing that aside from undergoing scrutinous performance and evaluation cycles based on racialized and gendered criteria, we must also often defend the validity and “legitimacy” of our work, perform extra care labor in DEI initiatives, hold space for and in solidarity with students and colleagues whose identities are erased or oppressed, provide child care or care for elders — all of this, while simultaneously dealing with similar levels of pain and discomfort that our white peers and men with autoimmune conditions endure.
Carla L. Lewis-Irizarry: Consequently, we as critical thinkers may risk reifying the belief that blackness and disability exist only as a response to whiteness. I say to my white counterparts, we need to stop hating each other and work together because we, BLACK WOMEN, are suffering too, if not more. The need for support and education is critical for us and those having a difficult time coping. It sometimes hurts when we see white individuals (men, women, or others) or celebrities announcing that they have been diagnosed with an autoimmune disorder or state they are now disabled. Society will provide any or all necessary resources to assist them and make them the face for something that BLACK people have been going through and suffering in silence for a very long time. I look at lupus like I look at cancer as a bullet, which has no name because regardless of your race, gender, or ethnic background, you can have these illnesses. So, we need to stop fighting each other and work together, and that’s why the disability rights movement and social justice movement are so important. These movements are not about making picket signs, shouting from a bullhorn, or seeking attention; it is about speaking, sharing, and spreading awareness. We are indeed not alone, and support is much needed for BLACK WOMEN, if not more than our white counterparts.
Speaking up and supporting Jada Pinkett-Smith has nothing to do with her celebrity status or how much money she makes. It is about helping another human being and, yes, a Black sista! Who is now trying to deal with something she has no clue how to conceptualize, and it’s hurtful to see another human being go through something and feel they have no support. It is not humanly right. It is selfless. I will continue to fight, educate as much as I can, support those who need support, help those who need help, and use my knowledge and skills to bring more resources to communities that we seldom or always forget or ignore.
It will require addressing race-based educational inequalities about autoimmune disorders related to BLACK women and women of color at their systemic roots, and replacing them with programs that place the well-being of supporting and understanding at the center. In this sense, perhaps our society needs to open our hearts and embrace BLACK women as we matter and love us as we love you.
DeVan L. Hankerson Madrigal: I wish white people and men with autoimmune disorders understood that our health condition connects us, and that buying into divisive tactics by big medicine to maintain the status quo keeps us all sick. There is value in joint advocacy among Americans from all ethnicities on issues related to public health. White people and men with autoimmune disorders may enjoy race- and gender-based privileges but it’s deeply dehumanizing to the self and psyche for individuals to participate in the maintenance of a status quo that ignores or worse yet, accepts and normalizes the pain of women and women of color. It makes me wonder if the U.S. cultural fascination with chivalry and the male hero archetype (same phenomena around the white-savior archetype) is predicated on maintaining a system that continually inflicts and then hopes to be the salve for the pain of women and people of color.
Jennifer White-Johnson: My friend Denise Shanté Brown, a disabled designer and holistic design strategist, says, “I strongly believe that black women and nonbinary folks are constantly planting gardens that can nourish the experiences and spaces that amplify designing for care, healing, and justice.” We need more support in creating those types of spaces that aren’t only fueled and overshadowed by the white disabled community. We need more investments in our vision without always feeling the need to justify that vision. If this ongoing care work is rooted in collective care and liberation, then help is needed to sustain the life of this ongoing work!
AWN: If you could go back in time, what do you wish you could tell your younger self?
Sarah Rizzuto: If I could go back in time, I’d tell my younger self not to worry so much. I’ll always be a worrier and over thinker, but most of the time, I’ll pull through. Hiring my own personal care assistants (PCAs) at nineteen while starting college was a nerve-wrecking task, one that my state and my university helped very little with. They said, you’re a boss now, the (unpaid) CEO of your life, do your job – never mind that you’re a college student suddenly living on your own, desiring romantic relationships and a social life. Juggling five to seven PCAs per semester to help you live your life and succeed academically isn’t something most folks could handle, period. And when you need as much physical assistance as I do, you have to work all the more to keep your autonomy intact. This is something I work on every day and a pandemic hasn’t made anything less complicated, but like I said, more often than not, I pull through. However, pulling through is survival mode and I expect to thrive. I can do that best when ableist, racist people and the systems that support them get their act together and place agency in the hands of disabled women of color.
Rahnee K. Patrick: You are believed and valued.
Terri Lynne Hudson: Honestly, I’d tell myself to get a detailed and honest family medical history, and the challenges to that would be the medical neglect/lack of medical care and the racism and classism that my older relatives had to deal with themselves. Still, I know that knowing what I might eventually be in store for in more detail and what symptoms to look out for would have been incredibly helpful. I don’t think I really ever considered that I’d eventually be dealing with issues other than the ones I was born with.
India Harville: If I could go back in time, I would tell my younger self, adopt a politicized disabled identity as a kid; it will save you years of pushing too hard to pretend to be non-disabled, and it’s not worth it. I would tell myself not to push so hard because racism, ableism, and capitalism are lying to you. I would tell myself I am enough and I have value separate from what I produce. Rest is radical and subversive; when you get older, check out the Nap Ministry.
Zahra J. Brown: I took a mainstream drama class in high school, and I did well in a monologue assignment. As a hard of hearing person, I shocked the teacher and shocked the deaf and hard of hearing department. Looking back, I would say to my younger self, “Resist the stigma in that toxic environment that said that people with disabilities cannot perform on the stage.”
Sara M. Acevedo: If I could go back in time, I would make sure to teach myself how to create a space where I could learn to care for my own needs and my own bodymind first, seeking assistance from people who have excellent self-care skills. My mom is great at doing this, and I am sure she tried to share this skill, but I was just not attuned to it growing up or to how important it was. To this day, she continues to teach me and it seems I still tune her out. My ways of being are so deeply rooted that I find it hard to put myself first and recognize my own value when it comes to issues that affect the collective. I also recognize that this might also be a defense mechanism and a good excuse for pushing my fears and traumas aside and focus on the world’s injustices instead. Overall, I would tell my younger self to examine precisely this issue – seeking some form of balance, setting my priorities straight, and somehow convince myself that I cannot “pour from an empty glass.” So, confronting my fears and traumas, caring for myself, and fighting for a better, more just and sustainable world for all — in that order.
Carla L. Lewis-Irizarry: To my younger self, you are a warrior, leader, and it is okay to ask for help when needed. Younger self, you continue to stay strong and head to the right path of teaching and sharing your knowledge that everyone matters, especially those with disabilities and POC.
DeVan L. Hankerson Madrigal: If I could go back in time, I would tell my younger self that it is okay to have pain and to express the trauma of pain. It’s okay that we are vulnerable to sickness; that’s what it means to be human. I would tell myself that just because you can push through the difficulties associated with having an auto-immune disorder doesn’t mean that you have to do it alone or that you don’t deserve help. I would also encourage my younger self to face and accept our RA and to seek help, especially with handling medical costs. I spent so much time denying and ignoring my RA or trying to pretend I could take a vacation from it. None of that is possible; however, there is such a thing as living the best version of YOUR life and that’s a life worth living.
Jennifer White-Johnson: You’re super rambunctious and exuberant, but you don’t know why. You are scared of water, but you love the smell of libraries. As you read, words go over your head, but you still love reading and listening to poetry, listening to the sound of your typewriter, listening to your friends laugh as they read your funny stories. Keep a hold of that sensory joy and honesty; it will take you far, realizing that only your stories will save you.
Learn more about our roundtable participants:
Carla L. Lewis-Irizarry, MPA, MA, MHFA is a doctoral student and holds degrees in Forensic Psychology, Public Administration & Policy, Disability Studies, and Mental Health Counseling. She is certified in Conflict Mediation and Cannabis Education and is a peer educator on lupus through many lupus organizations. Carla has 20+ years of experience in education and social work and is an advocate for individuals with disabilities, families, and the community. She fights for diversity and inclusion and social justice issues to help with the path of learning.
DeVan L. Hankerson Madrigal, MPP is the Research Manager at the Center for Democracy & Technology (CDT). Her work at CDT focuses on advancing human rights and civil liberties online. DeVan has spent her career working on communications policy and regulatory matters that expand consumer-side benefits derived from technology-based progress and innovation. DeVan has an auto-immune disorder called Rheumatoid Arthritis. She is on an anti-inflammatory diet, and at the moment her RA is in “remission” (meaning she no longer experiences severe symptoms.) DeVan proudly hails from Bedford Stuyvesant in Brooklyn, New York by way of South Carolina and Florida (meaning my grandparents were part of the Great Migration, escaping severe racial persecution and the imposition of poverty and social exclusion in a post-slavery South (which still persists in the South to this day btw.) Today, DeVan resides in Washington, DC, where she and her wife enjoy a mostly quiet life with their cat Sancho Panza. DeVan also welcomes new followers on twitter; please find her @dvhankerson.
India Harville (she/her), Founder of Embraced Body, is an African American femme, queer, disabled inclusive dancer, somatic bodyworker, and disability justice activist. India’s work centers the body as an often underestimated pathway to decolonize ourselves so we can embody social justice more deeply. India has spoken about disability justice and somatics in a wide variety of settings including college campuses and social justice organizations. India holds a BA in psychology from New College of Florida and a MA in Integrative Health Studies from the California Institute of Integral Studies. To learn more please visit www.embracedbody.com.
Jen White-Johnson, MFA is a Afro-Latina, disabled artist, designer, educator, and activist, whose visual work explores the intersection of content and caregiving with an emphasis on redesigning ableist visual culture. As an artist-educator with Graves’ disease and ADHD, her heart-centered and electric approach to disability advocacy bolsters these movements with invaluable currencies: powerful, dynamic art and media that all at once educates, bridges divergent worlds, and builds a future that mirrors her Autistic son’s experience. When her son was diagnosed as Autistic at age 2, she began to examine the absence of black disabled children in digital and literary media, this motivated the release of an advocacy photo zine entitled “KnoxRoxs” dedicated to her Autistic son. Her activist and advocacy work has been featured in The Washington Post, AfroPunk, New York Times, Teen Vogue, Latina.com, and is permanently archived in libraries at The Metropolitan Museum of Art and The National Museum of Women in the Arts. Jen is currently a Guest Lecturer of Design Justice at the University of Minnesota School of Design. She holds an MFA in Graphic Design from the Maryland Institute College of Art and a BA in Visual Arts from the University of Maryland Baltimore County. See more of her work online or IG + Twitter @jtknoxroxs
Dr. Sara M. Acevedo is an autistic Mestiza, critical educator, and disability studies scholar-activist born and raised in Colombia. She is an Assistant Professor of Disability Studies at Miami University in Ohio. Her formal training is in historical linguistics, action anthropology, and disability studies -and is an alumna of the Anthropology and Social Change Ph.D. program at CIIS. Dr. Acevedo recently finished a three year term with the Board of Directors of the Society for Disability Studies and currently serves on the editorial boards of Disability and the Global South: The International Journal and Ought: The Journal of Autistic Culture. Dr. Acevedo uses emancipatory research methods such as activist ethnography and collaborative research and draws from a variety of critical traditions, including plural feminisms, liberatory pedagogy, social movement thwory, spatial analysis, geographies of disability, critical autism studies, queer studies, postmodern philosophy, post-humanism, and others. Overall, her work is rooted in anti-racist, anti-ableist, decolonial, anti-capitalist, disability justice praxis. Her activist research agenda focuses on grassroots disabled leadership, horizontal organizing, the politics of self-direction and self-governance, and the creation of liberated communities and autonomous spaces by and for neurodivergent people living at the intersection of other minoritized identities.
Sarah B. Rizzuto holds a Masters in English as well as a Master of Fine Arts in Poetry from Southern Connecticut State University. She currently teaches creative writing there. She has also taught Disability Studies, a course she developed through Women’s and Gender Studies at SCSU. Sarah earned a graduate certificate in Women and Gender Studies from Southern too. Sarah is the former president of the CT Poetry Society’s New Haven chapter. Along with being a poet, Sarah considers herself an advocate for social justice and hopes to publish her first chapbook soon.
Rahnee K. Patrick is the first disabled Asian American Director of the Division of Rehabilitation Services at the Illinois Department of Human Services. Rahnee graduated in 1996 from Indiana University where she was an organizer of students with disabilities. In 2008, the American Association of People with Disabilities (AAPD) awarded Rahnee the Paul Hearne Award. In 2020, Rahnee earned her Master’s in Industrial and Organizational Psychology. She and her spouse Mike Ervin live in their condo in downtown Chicago with their two dogs.
Terri Lynne Hudson (she, her) is an actor, storyteller, multidisciplinary artist and disability advocate with spina bifida, living and working in Chicago. She has performed virtually over the past two years with Ghostlight Ensemble, Broken Nose Theatre, Babes with Blades, Accidental Shakespeare Company and Altertheater. You can hear her telling scary stories on Random Acts Chicago’s _Scary Stories Around the Fire_ podcast.
Zahra J. Brown, MA, BA is a York University graduate who earned a Master of Arts in Critical Disability Studies in 2020, and a Bachelor of Arts in Women’s Studies in 2014. She earned a diploma in Social Service Worker at George Brown College in 2016 and a certificate in General Arts and Science in 2004 at Seneca College. Zahra’s skills fall in the areas of public speaking, keynote, group facilitating, preparing, and presenting workshops. She has co-facilitated and facilitated trainings and workshops in Ontario human rights laws, accessibility laws, accommodation, and self-advocacy in education. Zahra’s professional skills of critical thinking and writing, public speaking have earned her opportunities to speak and present at colleges, universities, church youth conferences, and on social media. She has also been a facilitator and co-facilitator for workshops on the topics of mental health, disability, LGBTQ+, accessibility, human rights, and self-advocacy for success and change or transformation. Zahra Brown is a black, lesbian, cisgender woman who is hard of hearing with a mild cerebral palsy.
Interviews by Lydia X. Z. Brown, AWN Director of Policy, Advocacy, and External Affairs
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