If you see one person with a disability, you’ve probably seen a member of the 5%
Because anyone, theoretically, can join the disability community- population: 56 million-plus- at any time, we at Lois Curtis Center wish to recognize the thirty-fourth anniversary of the Americans with Disabilities Act (ADA) by doing what we do on a daily basis: highlighting the inclusion gaps that are present in disability rights initiatives (such as the ADA) that facilitate the systemic exclusion of Black and Brown disabled people from the disability community and, as a result, leave them hidden in the plain sight of mainstream society. This exclusion is no more apparent than when it comes to Home and Community Based Services (HCBS), the primary funding mechanism for disability services and supports in the US that, unfortunately, only 5% of the disability community enjoys access to.
What About the 95%?
People with disabilities who would benefit, but are not eligible for disability services such as HCBS can experience a variety of negative outcomes, including higher rates of child maltreatment, incarceration, exploitation, mental health issues, substance abuse issues, legal problems, chronic health problems, criminalization, and isolation. Although these social maladies are not unfamiliar points of consideration for most people, we at the Lois Curtis Center recognize that attempting to address these issues without using a disability lens leads to further marginalization for Black and Brown people with disabilities.
Disparities in Access to HCBS and Systemic Racism HCBS a is form of Medicaid that allows individuals with disabilities to receive care in their preferred community setting, as opposed to in an institution. Although Black people utilize Medicaid at three times the rate of white people they experience significant systemic barriers to accessing HCBS due to a variety of factors, including long waiting lists, reticence on the part of disability service providers to work in high-crime areas, and the unnecessarily complex and secretive application process itself. Because HCBS funding is the primary revenue stream for disability service providers, they are the key players when it comes to disability advocacy at the state and federal level, where their advocacy efforts are inexorably linked to their efforts to ensure that they continue to received funding. As a result, center their consumer base, not the disability community as a whole, in their efforts.
The Intersection of Systemic Racism and Disability
Trauma causes disability. Trauma exacerbates disability. And many Black and Brown people who find themselves at the intersection of systemic racism and trauma find themselves facing a door to the disability community that is seemingly locked shut. This exclusion has led to the significant skewing of understanding regarding the disability experience that is at the core of disability research, policy, legislation, service provision, and advocacy. It ensures that Black and Brown people with disabilities, particularly those grappling with cPTSD and/or other trauma-induced disabilities, are woefully pathologized and criminalized by the disability community and society, as a whole. The preschool to prison pipeline, police violence, and exploitative prison subminimum wage practices are, therefore, disability issues, whether decisionmakers within the disability community want to acknowledge them or not as such.
The Legacy of Lois Curtis Lives On at the Lois Curtis Center
The Lois Curtis Center was named after Lois Curtis, a disabled Black woman who, along with Elaine Wilson, was a plaintiff in the landmark 1999 Olmsted Decision, a Supreme Court ruling that affirmed the right of disabled individuals to live in the community and not, by default, be placed in institutions. Despite the ruling, and because both the Olmstead Decision and the ADA only address barriers people with disabilities experience because of disability, not race, Lois experienced periods of institutionalization for ten more years. Elaine, who was white, enjoyed living in the community for the rest of her life after Olmstead.
Ms. Curtis died on November 3rd, 2022 and on December 27th, 2022, the former elementary school that would come to be known as the Lois Curtis Center was purchased in Topeka, Kansas. The Lois Curtis Center provides services and supports specifically and exclusively at the intersection of systemic racism and disability for those who are not eligible for them elsewhere. Our offerings include a food pantry, commercial kitchen, paid youth program, advocacy customized to the needs of Black and Brown disabled people, subject matter expertise not found anywhere else in the US, and, soon, a private, non-charter, elementary school aimed at disrupting the preschool-to-prison pipeline for young learners with disabilities.
For more information on the Lois Curtis Center, find us at www.loiscurtiscampus.org.
Comments