¡PRESENTE! The National Coalition for Latinxs with Disabilities
“Emerging Latinx Disability Leaders at the CNLD Berkeley Conference in 2017.” Photo courtesy of authors.
Left to right - Front row: Leonor Vanik, Angel Ponce, Michelle Garcia, Alicia Contreras, Luisa Dedios (Cambiando Vidas) Left to right - Middle row: Kristen Salkas, Alexis Alvarez, Jesse Arreguin (Mayor of Berkeley) Left to right - Back row: Susan Henderson, Jorge Matos Valldejuli, Angelica Guevara, Alisha Vasquez, Katherine Perez, Catalina Galvan, Maria (Conchita) Hernandez Legorreta, Monica Villarreal.
According to a 2016 national telephone survey conducted by the Behavioral Risk Factor Surveillance System (BRFSS), 61 million adults identified as having some type of disability, which means that 1 out of 4 people have a disability in the U.S. When we look at the 2010 census, 1 out of 6 people are Latina/o. Looking at the BRFSS data from 2016 to 2018, and comparing the Latino population with the rest of the country, there are now 11.8 million Latinas/os who identify with some type of disability— the two most frequent disability types being mobility impairments (15.5%) and cognitive impairments (13.3%). Both of these values are higher than for the rest of the general U.S. population and, although our numbers are increasing, we have yet to position ourselves and leverage our power in the public and private sectors.
Despite this prevalence of disability within Latina/o communities, disability is still stigmatized. Though Latinx pride themselves on caring for family to the point where they will not ask for help and will rearrange their entire lives to be of assistance, oftentimes disabled family members are hidden away, ignored, pitied, or patronized. If the family is particularly religious, then relatives, friends, and neighbors will pray on their behalf for a “cure” or “fix” for their impairment. Other families are celebrated for having an “angelic type” of child (e.g., Down Syndrome) sent by God instead of having to care for a medically complex child. Those who “improve” or “overcome” their disability are viewed as inspirations, perpetuating lowered expectations for others who are disabled. In general, many disabled Latinxs become dependent on their families for survival, especially if they are English-language learners. We find that, based on the perceived gravity of the disability, Latina/o families will almost always defer to the doctor as the expert and minimizes the person's internal desire to live as they choose.
Even the language in reference to disability in the Latinx community can be negative and steeped in the medical model. Much like the perpetuation of ableism through the English language, Spanish terms like "loco," "estupido,” and "retardado" are commonplace in conversations in the Latinx community. We are socialized in viewing disability through a deficit lens, pitying those with impairments (e.g., “pobrecito,” “ay bendito”). Jokes about disability abound, and it is often difficult to translate disability justice terms from English to Spanish.
Within this context, Katherine Perez and Michelle Garcia began engaging in a conversation about forming an organization to unite the disability community and the Latinx communities, two groups that often do not interact. The impetus to create the National Coalition for Latinxs with Disabilities (La Coalición Nacional para Latinxs con Discapacidades - CNLD) began in December 2015, when Perez, a doctoral student at the University of Illinois at Chicago working on a student project, sought out Garcia, a community organizer at Access Living, a Center for Independent Living in Chicago, to brainstorm a way to bridge the two communities. Together, they decided to coordinate a conference in Chicago to bring together disabled Latinxs to talk about elevating the Latina/o disability community.
In late spring of 2016, the conference entitled “Constructing a National Organization: Empowering Latinos with Disabilities” convened at Access Living in Chicago. Approximately 80 people from around the country, including Puerto Rico, were in attendance. At the conference, it was proposed that a coalition should be established, and participants engaged in a group activity to generate ideas about how and why disabled Latinas/os should come together as a community. Shortly after the event, Perez, Garcia, and Yessica Guardiola Marrero from Puerto Rico’s Northeast ADA Center, a conference attendee, had phone conversations to discuss next steps. They sent out invitations through their networks and identified about 20 people who were interested in being co-founders.
As the founding members are located in various parts of the United States and Puerto Rico, we worked in committee structures using phone and internet conference platforms to communicate with the various members to transcend our different communication and visual needs. Our founding members were not all U.S. born; so, our Latina/o cultures provided unique experiences with inclusion and exclusion to our respective able-bodied communities. We continue to learn how to work with each other. As a volunteer organization, we understand the limitations of time, capacity, and the ebbs and flows of holding each other accountable whilst trying to elevate our disabled community.
Through conversations in and among our different working groups (research, outreach, conference, and immigration), we decided to formalize the National Coalition for Latinxs with Disabilities. We spent a long time discussing whether or not to use Latinx as this term was beginning to gain traction—it resonated for some but not others. In the end, we decided that Latinx was the appropriate word because we wanted to be intersectional and inclusive, which we were intentional about emphasizing in our organizational mission and vision. We also wanted to honor the collective wounds represented by the "x" in Latinx.
Image Description: We created and voted on a logo, which can be described as our Spanish acronym - CNLD - in white text on a black background with the saying with the saying “Nada Sobre Nosotrxs Sin Nosotrxs" in Spanish (meaning "Nothing about us without us" in English) underneath. On the bottom left portion of the letter C, there is a red circle surrounded by red figures holding hands around the circle but looking like the form of a star.
With the creation of our name, mission, vision, and logo, CNLD became a formal organization in September 2016, and we had our first conference as an organization in 2017 in Berkeley, California, entitled “Tearing Down Walls, Building Bridges: The Disabled Latinx Movement.” It was fitting to have our first conference in Berkeley, as it is the birthplace of the U.S. Disability Rights Movement. Since that conference, we established our first executive board in late winter of 2018, and we incorporated in the state of Illinois in the spring of 2020. 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 want to mentor and support current and future disability activists/advocates, policy makers, and scholars who identify as part of the disabled Latinx community. We also want to make folks aware of the particular challenges, needs, and concerns of disabled Latinxs. Moreover, we know that we cannot walk this path alone and that allies are an important part of our journey toward meeting our vision.
In the short time that CNLD has been in existence, we have educated elected officials and accomplished several initiatives, including writing public statements and designing and implementing programming. For example, in acknowledgment of the intersectional identities of the disabled Latinx community, we have written a Black Lives Solidarity Statement in response to the murder of George Floyd. We also have several statements on immigration in support of our undocumented and immigrant Latinxs, including a statement on the “zero-tolerance” policy that separated over 2,300 children from their families; a “Free Rosa” public statement demanding the release of 10-year-old Rosamaria Hernandez by ICE agents; and a statement on the public charge ruling recently stayed with the November 3rd ruling from the Seventh Circuit Court of Appeals on the November 2nd decision from the Northern District of Illinois, striking down the Trump Administration's rule for violating the Administrative Procedures Act.
Recently, in the midst of the pandemic, we created a webinar series called “Nosotros” for the disabled Latinx community. Starting at the end of March and then subsequently each week, we dedicated an hour and a half to hearing from disabled and able-bodied Latinx guests and talking about the needs and concerns of the disabled Latinx community via Zoom. The idea for “Nosotros” arose from the fact that the Executive Board of CNLD, who all identify as being disabled Latinx, were facing feelings of isolation and fear due to the COVID-19 pandemic. We would meet virtually to check on one another, and we thought - how could we, as an organization, continue to support and uplift our disabled Latinx community? How can we spread hope, joy, and support rather than give into the despair of the pandemic? Before we knew it, the “Nosotros” series was born. Thus far, we have covered the following topics: mental health, immigration, the pandemic in Puerto Rico, parents with children with disabilities, siblings, science communication, ADA law, self-care, and the history of the Willowbrook State School. After a short break, our series will be reconvening starting in December 2020.
CNLD also has a research working group to collect data on/with the disabled Latinx community as well as assist with research projects dedicated to our organizational mission. Research on people with disabilities tends to focus on White disabled people (Bell, 2006). Latinxs, with and without impairments, are typically excluded from normative conversations in the academy in general. In addition, to our knowledge, the first study to focus on the intersection of Latinidad and disability was conducted by Kathy Martinez and Robin Savinar on behalf of the World Institute on Disability's Proyecto Visión, publishing the results in a 2006 report entitled Latinos with disabilities in the United States: Understanding and addressing barriers to employment. To address this gap in information and knowledge production, our research team piloted a national survey to assess the needs and concerns of the disabled Latinx community in a variety of sectors, including employment, housing, education, transportation, and identity. We presented our initial findings at the Association for University Centers on Disabilities in 2018, and we plan to revise and redistribute the survey in the near future. Similarly, we will be holding a virtual conference in fall of 2021 to feature the work of disabled Latinx scholars, practitioners, and community organizers and activists.
Though we have had some success and have been mentored and embraced by certain influential, non-Latinx members of the disability activist community, CNLD has faced quite a few internal and external challenges as an organization. In the beginning of our formation, we had a few members leave and/or take minimal roles out of protest for having non-Latinx individuals involved in the formation of the organization. We are also in a transition period as Katherine, our inaugural President of CNLD, stepped down to become the Director of the Coelho Center for Disability Law, Policy and Innovation at Loyola Marymount University Law School in spring of 2019. We also had to restructure and institutionalize procedures and practices this year for our incorporation process, which led to less time for programming and actions.
Like other non-profits, we also have funding concerns and constraints. We acknowledge that many disabled Latinxs do not have the financial capacity to regularly donate to our organization. We do not ask for dues and try to limit requests of our community. We have the benefit of not having a lot of overhead associated with a physical space; however, we do need funding to carry out research and provide programming, education, and resources for disabled Latinxs.
Even with the personal and structural barriers in our way, CNLD is determined to address the things that most impact disabled Latinxs in the U.S. and abroad. Our recent focus has been on COVID-19 transmission, the weakening of the American Disabilities Act (ADA), immigration (especially in relation to detention centers and deportations), education, housing, and employment. We are also extremely anxious about the negative impacts of climate change on disabled Latinxs around the world, as brilliantly illustrated via performances by Sins Invalid in their production “We Love Like Barnacles: Crip Lives in Climate Chaos.” We have already witnessed our disabled Boricua siblings suffer after Hurricane Maria and anticipate that this is just the beginning. It is our intention to be there, to bear witness, to assist, and to empower our people.
Dr. Lisette E. Torres-Gerald is a trained scientist and disabled scholar-activist who currently runs a writing center and coordinates two National Science Foundation (NSF) grants (Louis Stokes Alliance for Minority Participation (LSAMP) Program and S-STEM Program) at Nebraska Wesleyan University. She has a doctorate with a Certificate in Social Justice from the School of Education at Iowa State University and a M.S. in Zoology with a Certificate in Ecology from Miami University. Her academic research focuses on addressing racialized gender justice and disability in science and higher education. Lisette is a co-founder and executive board member of the National Coalition for Latinxs with Disabilities (CNLD) as well as an advisory board member of Science Friday’s Breakthrough Dialogues Program and the Invisible Disability Project (IDP). She is also an active member of Science for the People, serving as a Lead Editor and Accessibility Editor for Science for the People Magazine. Lisette has been identified as an AERA/Spencer Foundation Early-Career Scholar and a Kavli Foundation Sponsored Network Leader for Inclusive Science Communication.
Dr. Leonor Vanik is the President of the National Coalition for Latinxs with Disabilities (CNLD). She holds a Ph.D. from the University of Illinois at Chicago from the College of Urban Planning and Public Affairs, and has a sibling, Maria, who is a disability artist at Arts of Life in Chicago. Leonor is an evaluation management consultant and a community development researcher focusing on the social production of disability and marginalized spaces in the built environment. She is currently working on research pertaining to disaster disability mitigation, culturally competent community engagement, and civic government engagement. She has extensive experience working with non-profits, government, and foundations, and is the co-editor of the [forthcoming] Latinx Disability Reader.