Disabled Latinx Familia: Interview with Lisette Torres-Gerald
The National Coalition for Latinxs with Disabilities (CNLD, Coalición Nacional para Latinxs con Discapacidades) will be having their 2nd annual conference, Tearing Down Walls, Building Bridges: The Disabled Latinx Movement at the Ed Roberts Campus, Berkeley, California, June 16-17, 2017. StoryCorps will be recording oral histories with some of the participants on June 15 as part of the Disability Visibility Project™. I am giddy at the thought of all these new stories for our online archive!!
Here is my interview with co-founder Lisette Torres-Gerald. Some parts have been edited and condensed. –Alice
Tell me a little bit about yourself!
I am a cisgendered Puerto Rican Jersey girl who now lives in the Midwest, which has been an adjustment! I work full-time as the Assistant Director of the Cooper Center, a writing center at Nebraska Wesleyan University (NWU), and I am currently a doctoral candidate in the Higher Education Program in the School of Education at Iowa State University. In my “free” time, I am part of the Louis Stokes Alliance for Minority Participation (LSAMP) team, a NSF-funded program dedicated to the recruitment and retention of students of color in the sciences, as well as the S-STEM team, another NSF-funded program focused on students from low-income backgrounds. Both programs are at NWU, where I also advise an undergraduate multicultural student group called MOSAIC.
Outside of NWU, I am part of a team of scientists, science historians, educators, and science advocates who are trying to revitalize Science for the People, a radical science organization that existed from 1969-1989 and was dedicated to developing a progressive science movement. I have written about my former life as an aquatic ecologist in a book chapter titled “Tigre del Mar: A Boricua’s Testimonio of Surviving a Doctoral Science Education,” which can be found in the edited work Envisioning Critical Race Praxis in Higher Education Through Counter-Storytelling by my colleagues Dr. Natasha N. Croom and Tyson E.J. Marsh.
At home, I am a wife to a fellow academic (he’s a physiological ecologist) and a mother to a lovely, kind, and funny 3-year-old boy. My son is truly my joy and, here comes the cliché – I cannot imagine my world without him. I actually found out about my disability after giving birth to him.
After taking my beautiful C-section baby home, I began to feel pain in my hips. It got to a point where I would cry because I could not find a comfortable way to sit. I felt extreme fatigue, no matter how long I slept. The pain traveled to other parts of my body and I became more forgetful than normal. After visiting my general practitioner and a rheumatologist, I was diagnosed in the spring of 2015 with fibromyalgia, a chronic condition with no known cure. I am still processing what this all means for me, but one of my initial writings on this experience is a blog post for Write Where It Hurts called “Sacrificio.” I have written a book chapter based off of this post titled “Sobreviviendo Sin Sacrificando – An Intersectional Testimonio from a Tired Mother-Scholar of Color,” but I am currently waiting on the reviews. Thinking back, fibromyalgia was probably in my life as early as high school. Nevertheless, I would consider myself to be new to the disability community.
For people who are unfamiliar with CNLD, please describe the mission and your involvement with this organization.
I was blessed to receive an email from Katherine Perez, who is a doctoral candidate at the University of Illinois at Chicago and winner of the 2017 American Association for People with Disabilities (AAPD) Paul G. Hearne Leadership Award. Honestly, I am not sure how she found me, but I am so glad she did! She invited me to become a co-founder of an organization dedicated to the disabled Latinx community, which we later collectively decided to call the National Coalition for Latinxs with Disabilities (Coalición Nacional para Latinxs con Discapacidades, CNLD). From the beginning, we all agreed that we wanted our coalition to be inclusive, intersectional, and focused on the human rights of Latinxs with disabilities. So, our mission is to “work in solidarity to affirm, celebrate, and collectively uplift Latinxs with disabilities through community building, advocacy, protection of rights, resources, and education.” We are trying to foster a disability movement as well as acknowledge and embrace the complexity of identity within the Latinx community.
In terms of my involvement with CNLD, I participate on organizational conference calls and have been involved with the creation of the agenda for our 2nd annual CNLD conference – Tearing Down Walls, Building Bridges: The Disabled Latinx Movement, which will be held June 16th and 17th on the Ed Roberts Campus in Berkeley, CA and is co-hosted with the Disability Rights Education and Defense Fund (DREDF). I am also involved on our research committee, which currently includes Katherine Perez, Kristen Salkas, Maria (Conchita) Hernandez, and John Silvi. We have created a needs assessment survey that we hope to launch live on our website upon IRB (institutional review board) approval. We want to identify what the disabled Latinx community feels it needs and is not currently getting so that CNLD can better work with and for Latinxs with disabilities.
Thinking about Vilissa Thompson’s #DisabilityTooWhite hashtag and the conversations going on about race and disability, do you feel Latinx with disabilities are included in the broader disability community? In other communities and social justice movements?
I honestly do not think that Latinxs with disabilities are recognized in the broader disability community, other social justice movements, or even within the able-bodied Latinx community. That is why we created CNLD and why we want to be intentionally intersectional. We want to raise awareness about the lived experiences and needs of Latinxs with disabilities. The reasons why we are rendered invisible and unheard are complex, but they definitely include ableism, racism, sexism, heteronormativity, and internalized oppression. Our CNLD research team wants to examine, document, and share the narratives of Latinxs with disabilities to unpack and unveil why Latinxs with disabilities are excluded in conversations around race and disability. I truly appreciate Vilissa’s work because she has really opened the way for us to begin to broach this conversation on the intersection of race and disability and better serve all people of color with disabilities.
What has it been like organizing this year’s conference? What are some of the challenges of putting together a conference that’s accessible culturally, linguistically, physically, and programmatically?
Organizing the conference has truly been a collective effort, and I appreciate all the work that each and every one of our coalition members has put into it! I am amazed at how well we work together despite our individual personalities and the fact that we are located throughout the United States. We conduct a lot of our meetings via conference calls, and we make use of email and Google Drive to share information and draft documents. We also divided ourselves into committees to tackle the logistics and planning of the conference. It has been a blessing that each of us has been able to use our networks and individual resources to bring this conference to fruition.
We knew that we were going to experience challenges; so, we relied heavily on the experiences of our friends within the disability activist community. For example, we were able to have a wonderful conversation with Sandy Ho, the lovely force behind the Disability and Intersectionality Summit. She graciously shared what she learned about coordinating and facilitating a national conference.
Like most non-profits, our biggest challenge has been financial. We definitely had to rely on our family and friends for donations, but we have been active in seeking sponsorships, monetary and in-kind donations from local and national businesses. We also partnered with ADAPT of Texas during their fun-run fundraiser. We currently still need in-kind donations for our conference; so, we are still working hard to find willing local businesses.
In terms of accessibility, we intentionally chose the Ed Roberts Campus because it is the birthplace of the Disability Rights Movement. We knew it was a physically accessible building, and Susan Henderson, Executive Director of DREDF, was gracious enough to provide us with the space. Since we will not know the final number of conference participants until the week of the conference, we are hoping that we have enough space for everyone, but we are also preparing for potential overflow. We will live stream the conference into an alternate room if necessary.
When it came to language, we had to decide if we were going to do the conference primarily in English or Spanish, knowing that we would need an interpreter either way. Given the fact that several of our speakers speak only English, we decided to have the conference primarily in English. We also had to make sure that we had ASL interpreters. Luckily, we had individuals within our coalition and our networks willing to volunteer their services!
We were also challenged by deciding on a theme for the conference and limiting topics to fit into 2 days. We wanted to be intentional about community-building and intersectionality, but that also meant that we could not cover all the topics we had in mind. We had to try to be as selective as possible.
Our biggest challenge, however, was being able to invite and arrange travel for undocumented Latinxs with disabilities. With this political climate of increased ICE raids, deportations, and police violence, some of our potential conference participants were rightfully afraid to travel across state lines. This is something that we will have to think more deeply about for our next conference.
What are you most looking forward to during the 2-day conference?
I am really looking forward to finally meeting my CNLD colleagues in person! LOL. This will be the very first time that I will actually share the same space and time with them! We interact via email, conference calls, and social media, but it will be wonderful to finally engage with them in person. I am also excited about community-building and getting more people involved in CNLD and the Disabled Latinx Movement.
Last year CNLD partnered with Access Living in Chicago for your first conference and this year you are partnering with DREDF. How did these partnerships come about? Who are some collaborators/partners for the conference this year that you’d like to give a shout-out to?
One of our co-founders, Michelle Garcia, works for Cambiando Vidas and is the Latino Community Organizer for Access Living in Chicago. She and Katherine Perez spearheaded the conference last year. When we were looking for a conference location this year, Michelle wrote a letter to Susan Henderson introducing our organization, explaining the purpose for holding the national conference, and requesting assistance from DREDF with finding a venue. We were very appreciative that Susan was willing to allow us use of the Ed Roberts Campus this year. We are also pleased to have the following collaborators and sponsors for our conference this year: DREDF, StoryCorps, the American Association of People with Disabilities, AT&T, Access Living, Royal Paper Box Company, the Center for Accessible Technology, Campins Benham-Baker PC, the Law Office of Lainey Feingold, and all our wonderful panelist speakers who were willing to speak at the conference for free.
Why is it important for disabled people of color to have spaces for their communities? How has it impacted your life personally as a disabled Latinx?
It is important for us to have spaces to connect with one another and to remind each other that we are not alone. Given the pervasiveness of ableism and Whiteness in society, it can often feel like you are the only one, which is definitely not true. There are a lot of us out there. We just need to find a way to find each other, foster community, and advocate for ourselves and our communities. We need to make our voices heard as well as have a place to come together to heal from the traumas we experience as disabled people of color. That is why CNLD, Vilissa’s Ramp Your Voice!, your Disability Visibility Project and Linda Williams’ Invisible Disability Project are so incredibly important.
As a new member of the disabled Latinx community, these groups have encouraged me to embrace my new disabled identity. When I found out I had fibromyalgia, I mourned the loss of my “former, healthier” self, but being able to interact with other disabled people of color has made me question what is “normal” and what it means to be “healthy.” My disability and my new disability familia have shown me a different way to look at the world. I have changed the way I think about my work and scholarship, and I am very selective with how I spend my time and energy. I have had to contemplate on and reevaluate what I want to accomplish and how I want to live my life given my disability. Speaking to and learning from other disabled people of color has allowed me to figure things out. Thanks to them, I am learning to love myself.
If you had to name one political issue that impacts disabled Latinxs critically that most people don’t know about, what would it be and why?
That’s a tough one! I had to text my amiga, Katherine Perez, to think about this! LOL. I think I will feel more confident in my answer once we have collected our data via our needs assessment (it’s the academic in me!). If I had to venture a tentative answer, I would say that it is the intersection of race/ethnicity and disability within education and immigration (I cheated!). I think the tendency is to compartmentalize lived experiences in these areas based on single social identities. We know that undocumented Latinxs are negatively impacted by racism through ICE raids, deportation, and family separations as well as by inadequate, underfunded school systems and limited college access. However, we do not have a full picture of how these things impact undocumented and documented Latinxs with disabilities. For example, Katherine is interested in examining how undocumented Latinxs with mental disabilities cope with the inhumane conditions within U.S. detention centers. Meanwhile, given my experience within higher education, I think that there is a dearth of research on the educational journeys of Latinxs with disabilities, particularly within science.
Is there anything else you’d like to share?
I am personally invested in CNLD and the human rights of disabled Latinxs. My mother is legally blind. I witnessed her slowly lose her eyesight and buy into the stigma around disability that exists within the Latinx community. I have also seen how able-bodied people treat her – they assume that she cannot speak English, think that they need to speak loudly and slowly to her, or avoid touching her (as if they can contract her condition), particularly in the healthcare arena. These experiences have stimulated me to act and fight for the disabled Latinx community. Everyone deserves to be loved and treated with respect and dignity.
About
Lisette Torres-Gerald is a trained scientist, educator, and scholar-activist whose work focuses on addressing racial and gender inequity in science, specifically, and higher education, generally. She is interested in how power and privilege influence the social dynamics of the scientific community as well as the experiences of women of color in science. As a doctoral candidate in the School of Education at Iowa State University, she is currently examining how scientist bloggers of color disrupt or maintain master narratives surrounding knowledge production and dissemination.
Twitter: @LisetteETorres3
National Coalition for Latinxs with Disabilities on Twitter: @DisabledLatinx
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