The following blog post was originally published on the World Institute on Disability’s website and is reposted here with permission. View the original blog here.

By Dikko Yusuf

Black disabled history is an aspect of Black history, which informs world history. Black History Month is officially celebrated every year in the U.S., Canada, Ireland, and the UK. During this month, we celebrate the achievements of Black leaders throughout history and while many of these leaders also had a disability, that aspect is often minimized or overlooked. Black disabled people are multiply-marginalized, and more prominent awareness of the accomplishments of Black leaders, who are often also disabled, can help drive and inform systems change for the current and future generations of disabled people around the world.

Black Disabled Leaders in History

Disability has often been erased from the stories of many Black historical figures. Disabled activists Vilissa Thompson, Heather Watkins, and Ola Ojewumi all highlight how their exposure to Black history in school failed to account for the disabilities of Black civil rights leaders.

Abolitionist Harriet Tubman and pianist and composer Thomas Wiggins are good examples to consider here. Tubman had epileptic seizures since she was 12, and is remembered for leading enslaved Black people through underground passageways to freedom. Wiggins was born blind and is celebrated for being the first Black person to perform at the White House.

A historical account that recognizes Tubman’s disability is more likely to examine how her disability influenced how or when she did certain things. When we recognize Wiggins’ disability, his story becomes more than a musician’s biography; it becomes the history of disabled musicians.  Without an acknowledgment of their disabilities, their stories are incomplete.

Throughout history, many other Black disabled people helped to secure rights and representation for people with disabilities.

Fannie Lou Hamer was a leader in the Civil Rights Movement and the vice-chair of the Freedom Democratic Party. Johnnie Lacy helped found the Berkeley Center for Independent Living in 1981. She also served on Hayward’s Commission on Personnel and Affirmative Action, and the Mayor’s Disability Council for the city and county of San Francisco. Both Lacy and Hamer had polio and made an indelible mark for Black women and disabled people’s rights in the U.S.

Brad Lomax was yet another Black disabled leader who made history. Lomax was a member of the Black Panther Party and had multiple sclerosis and used a wheelchair. In 1977, he participated in the historic 504 Sit-ins at the San Francisco Federal Building and encouraged the Black Panthers to provide meals and other supplies to the protestors. The 504 Sit-ins achieved its objective on April 28, 1977, when the secretary of the Department of Health, Education and Welfare (HEW), Joseph A. Califano Jr., signed the regulations  to implement Section 504 of the Rehabilitation Act of 1973.

Joyce Jackson, who contracted arthritis at the age of 12, was also a civil rights activist. She was among 20 other activists that went to Washington D.C. to make a case to officials in the Carter administration for the implementation of Section 504 By the HEW.

Audre Lorde was a Black lesbian writer with breast cancer and civil and disability rights activist. Her powerful and evocative poetry broadly drew from her identity which included the intersections of racism, sexism, classism, ableism, and homophobia.

Lois Curtis was a disability rights advocate who grew up with cognitive and developmental disabilities and spent nearly 20 years in institutions, at different points in her life. The landmark Supreme Court ruling on her case, Olmstead v. L.C., that institutionalizing people with disabilities was discriminatory, was a monumental and watershed moment in the Independent Living Movement.

Black disabled leaders such as Fannie Lou Hamer, Brad Lomax, Joyce Jackson, Audre Lorde, Lois Curtis, Johnnie Lacy and many more championed civil rights and fought hard against ableism and racism. Black disabled history adds a comprehensive component to the way we interpret historical figures and events. It gives us a richer and clearer perspective on important moments today and throughout history.

As Florida Governor Ron DeSantis recently  blocked a Black studies course for high-achieving high schoolers and other conservative politicians push to block Black history from being taught in schools, we must make a concerted effort to make sure these stories are told. Black history acknowledges the experiences of oppression and marginalization faced by Black people and the systemic racism that Black people continue to face globally. When Black history is hidden, systemic racism continues to be denied by members of the next generation of leaders and decision-makers, and through that denial, the systems remain in place.

Black disabled history represents the experiences of multiply-marginalized individuals confronted by racism and ableism. During disasters and emergencies, for instance, Black disabled people, who often live in resource-deprived areas, experience worse outcomes in relation to white disabled people. They are also disproportionately impacted because their disability needs are not considered in disaster preparedness, response, and recovery. Apart from the oppressive racism faced by Black people, Black disabled people also have to contend with the ableism that limits their ability to access opportunities and resources. Additionally, Black disabled people face discrimination and violence through systems of policing. The limited data we have on the topic shows that more than 50% of Black disabled people will be arrested by the time they turn 28, and at least 50% of people killed by police are disabled. Many of the high-profile cases of Black people killed by police were significantly impacted by the victims’ disabilities, but very little media coverage acknowledges the impact of the combination of racism and ableism on these cases. Black people with disabilities also have to live with the fear of being further marginalized by disclosing their disabled identities.

“Black people may be hesitant to identify as disabled for fear of further discrimination based on that identity,” Ojewumi said.

This fear of discrimination also drives some Black people to hide their disabilities and code-switch or alter their language to sound less Black, around white peers. When we have Black disabled stories told in the mainstream media, we are able to create diverse and inclusive societies that recognize the experiences of a group that is often overlooked. When these stories are told, we are able to examine the intersectionality and sociopolitical ramifications of being Black and disabled.

Beyond Black History Month

Discussions about the achievements of Black disabled leaders should be held all year round, not just during Black History Month. Furthermore, it is important to not just celebrate Black disabled history, but to also work to create a society that is inclusive of Black disabled people. The disability justice framework is a great place to start. The disability justice framework recognizes the intersectionality of disabled people who belong to additional marginalized communities and is a necessary ideology to achieve the liberation of Black disabled people. When we acknowledge Black disabled history, we can create a better future for Black disabled people of today and tomorrow. Black disabled history is world history.

Today, twelve national organizations which filed an amicus brief in Perez v. Sturgis Public Schools offered congratulatory and supporting statements in light of the  unanimous 9-0 decision of the U.S. Supreme Court (the Court) in support of plaintiff Miguel Perez. As recommended by disability advocates, the Court’s decision reverses the decision of the Court of Appeals for the Sixth Circuit to protect students with disabilities and will ensure that students are able to use civil rights remedies as provided under the Individuals with Disabilities Education Act (IDEA).

In response to the decision, the organizations offered the following statements:

Shira Wakschlag, Esq., The Arc of the United States, Senior Director and General Counsel: “Miguel Perez is just one of millions of students with disabilities who face a multitude of barriers in getting the supports and services they need to thrive in school and to build the future they desire,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel at The Arc. “These barriers, which include overt segregation and discrimination, force parents and children to become experts in self-advocacy and the law in order to get the education they are entitled to. Consistent with the language of the ADA and IDEA, today’s unanimous decision in Perez v. Sturgis Public Schools removes unnecessary burdens from families seeking relief and helps ensure that students with disabilities and their parents are able to pursue every avenue of justice available to them when their civil rights are violated.”

Selene Almazan, Esq., Council of Parent Attorneys and Advocates, Legal Director: “COPAA led the development of the amicus brief to ensure the Court heard from parents, advocates, and attorneys about the IDEA’s civil rights protections, including that the law does not require a student and their family to exhaust their administrative remedies to bring forward non-IDEA civil rights claims. The decision today affirms this critical aspect of the law.”

Elizabeth Athos, Esq., Education Law Center, Senior Attorney of Educational Equity: “The Court’s recognition that Congress does not require students with disabilities to litigate under IDEA before seeking relief under federal antidiscrimination laws that IDEA cannot provide is an important vindication of student rights. We are grateful to Miguel Perez for representing the interests of a great many children with disabilities, to COPAA for ensuring that the voices of students with disabilities and their families were expressed, and to the Court for applying faithfully the law written by Congress.”

Dr. Jacqueline Rodriguez, National Center for Learning Disabilities, CEO: “The National Center for Learning Disabilities applauds the Supreme Court’s decision in the Perez case to ensure all families have access to a high-quality education. We commend the Perez family for their steadfast commitment to protecting the rights of students with disabilities and their families. No family should have to endure what the Perez’ went through in order to maintain their legal rights but because of their efforts, families of students with disabilities continue to have the tools necessary to remedy a situation if their child is not provided their right to a free and appropriate public education.”

Dan Stewart, Esq., National Disability Rights Network, Managing Attorney: “Today’s U.S. Supreme Court’s unanimous decision is a common-sense affirmation of a student’s right to pursue claims with different remedies under different laws. The earlier court decisions prohibited Miguel from pursuing monetary damages under the Americans with Disabilities Act (ADA) after he had settled his education claims under IDEA, the Individuals with Disabilities Education Act. In recognizing those differences in the context of complex litigation, the Court provided much needed clarity that students like Miguel can seek full relief for the wrongs they suffered. We would like to extend a special congratulations to Disability Rights Michigan, the Protection and Advocacy agency for the state of Michigan who started work on this case back in 2017 for following it to a successful conclusion today.”

Signers of the Amicus Brief: The Arc of the United States, The Autistic Self-Advocacy Network (ASAN), Communication First, The Coelho Center for Disability Law, Policy and Innovation, Council of Parent Attorneys and Advocates, Education Law Center, Innisfree Foundation (Innisfree), Learning Rights Law Center, National Center for Learning Disabilities (NCLD), National Center for Youth Law (NCYL), National Disability Rights Network (NDRN), National Federation of the Blind (NFB).

Perez v. Sturgis Public Schools was argued before the U.S. Supreme Court on January 18, 2023. Miguel Perez is represented by Roman Martinez, Latham & Watkins. Also representing Perez are: Ellen Marjorie Saideman, Law Office of Ellen Saideman; Marc Charmatz and Leah Weiderhorn, National Association of the Deaf Law Advocacy Center; and, Mitchell Sickon, Disability Rights Michigan.

URL to SCOTUS decision: https://www.supremecourt.gov/opinions/22pdf/21-887_k53m.pdf

URL to Amicus Brief: https://www.supremecourt.gov/DocketPDF/21/21-887/246668/20221116141113015_21-887%20Perez%20v%20Sturgis%20Brief%20for%20Amici%20Curiae%20The%20Arc%20of%20the%20US%20et%20a.pdf

By Nathaniel Lentz

Throughout my life there was one phrase that was ingrained in my brain: expect the best from myself. I always believed if there was something I really wanted to do, that I should not let my disabilities stop me. No matter how challenging or difficult something might be, I would work my hardest to succeed.

It started when I was very young. My parents treated me like any other child. They didn’t make things easier for me, but they also realized that I would need extra help. They would work with my public school teachers to make sure I had the support I needed to pass my classes. Sometimes my teachers would try to make things easier for me because they thought regular class assignments would be too hard. That did not sit well with my parents.

I remember a meeting with my mom and my sixth-grade teachers.  The teachers recommended that I sign up for a particular class because it did not require much writing. My mom strongly disagreed. She said more writing was what I needed, so I was assigned a class where the students had to write a lot, and I learned how to write.

From my elementary classes though the end of high school, I would study a lot more than most students. I would often spend weekends with my grandma. She would tell me that we could go to Taco Bell after I finished my homework. When I would wake up on Saturday morning, there would be a pile of practice tests and assignments that I had to finish before I could get some tacos.

When I was a senior in high school, I was interviewed by Disability Rights Wisconsin for a position speaking to high school parents and teachers about transitioning from high school to college or job training. That first engagement led to many more speeches advocating for people with disabilities at the local, state, and even the national levels.

My parents made sure that I took college prep classes, even though because of my learning disabilities, teachers thought I would never make it in college. But I had learned what I needed to succeed: study until I understood the material. A lot of my roommates would spend their weekends at parties or in bars. I spent my weekends in the library.

Working on my college degree gave me the confidence to advocate for myself. If I saw that a professor would not work well with me, I would change to another. The same applied to tutors who were unhelpful. I also developed strategies that were somewhat unorthodox to help me learn the information at a fast pace.

Another way I advocated for myself in college was with living arrangements. If I felt my prospective roommates would make it harder for me to study, or who would ridicule me because of my disabilities, I would schedule a meeting with the Housing Director, and she would find a dorm or a room where my roommates would be respectful.

Because I advocated for myself, my college experience was the best. I had the right support, the right accommodations, the best professors a student could ask for. That is how I earned my bachelor’s degree.

Because I had my bachelor’s degree and with my experience as a public speaker, I was appointed to a position on the Wisconsin Board for People with Developmental Disabilities. Before my eight-year tenure on the board had ended, I had served on numerous committees, including the Executive Committee, and I was the Chair of the Nominating Committee.

Since then, I have been appointed to the Living Well grant. I was also hired by People First Wisconsin as an Outreach Advocate and selected to be an officer on the National Council of Self Advocates.

In my work for the Living Well Grant, I reach out to people with intellectual and developmental disabilities to ask about their experiences with the Safe and Free Curriculum, a program created by the Living Well staff to help people learn about self-advocacy, how to reach personal goals, and how to live independently. I also assist the staff in writing follow up questions, as well as working on other projects.

As an Outreach Advocate for People First Wisconsin, I am facilitating meetings, reaching out to organizations for our Advocacy Information Discussion (A.I.D.) meetings, taking notes during our collaborative meetings, working on video projects, and assisting with the organization’s website.

My duties as a National Council of Self Advocates Officer deal with public policy at the national level. I work on documents about public policy, make recommendations, and serve on the Technology Coalition. I have been advocating for the public policy documents to be translated into plain language or accompanied by visual aids to make them more accessible to people who would be unable to understand the policies in their current form.

My main goal in working with these organizations is to help people with intellectual and developmental disabilities to learn what their rights are and how to advocate for what they need, so they can build a good life for themselves just like I have!

Want to read more stories like this? Visit thearc.org/stories. 

By: Nicole Jorwic, Senior Director of Public Policy and Bethany Lilly, Senior Director of Income Policy

While legislators in Washington, DC debate what IS and IS NOT infrastructure, people with disabilities and their families are grappling with day to day life, and a system that did not have the infrastructure and staff to support them before COVID-19, and today is only worse.

#CareCantWait any longer.

Every day that passes without investing in the care infrastructure, is another day a person with a disability does not get the services that they need, another day of family members scrambling and juggling to fill in the gaps, and another day our country fails to seize the chance to build back better.

The pandemic has highlighted the gaping holes in the systems that support people with disabilities—a direct care workforce stretched to the breaking point by low wages, family caregivers choosing between their jobs and their loved ones, and people with disabilities trapped in poverty and in a life limiting their potential.

As conversations continue about where we can and cannot afford to make investments as a country, we cannot let the needs of people with disabilities, their family caregivers and the direct care workers who support them to get left behind. As the saying goes, if you make something work for people with disabilities, it works better for everyone. This is infinitely true when it comes to economic recovery. Congress must pass the Better Care Better Jobs Act that includes a desperately needed  $400 billion investment in home and community-based services (HCBS), a national paid family and medical leave program, and update decades-old rules that trap Supplement Security Income (SSI) beneficiaries in poverty. These are The Arc’s priorities as Congress turns to recovery.

Home Is in the Community, With the Services To Thrive

The Biden Administration already did propose a huge long-term investment in HCBS in the American Jobs Plan, also known as the infrastructure plan, and Congress followed suit with the introduction of the Better Care Better Jobs Act on June 24, 2021. The bill includes a $400 billion investment to build more access to home and community-based care and create over a million direct care jobs to support people with disabilities, and make those jobs better.  There cannot be an economic recovery for this workforce, one made up mostly by women of color, without an investment to raise wages and create more direct care jobs.

People with disabilities and aging adults rely on direct care workers to provide the supports and services that they need to live in their homes and communities, and family caregivers rely on that support to work themselves. Having a skilled, properly trained and fairly paid workforce is the lynchpin for success for so many people with disabilities to live the independent life that they choose, and in some cases in can literally mean life or death. The proposed $400 billion investment in HCBS would address those systemic problems—raising wages and expanding access that will lead to decreased waiting lists.

When the Better Care Better Jobs Act becomes law, the $400 billion investment will allow states to build infrastructure and capacity for service provision, with a well-paid workforce, and thereby supporting unpaid family caregivers who are filling the gaps for the system that currently leaves nearly one million people waiting.

Paid Leave for All

The Biden Administration has also recognized the need for a comprehensive national paid leave program and included it in the proposed American Families Plan. It would cover all family members, including siblings and grandparents, who might need to take time off to help support people with disabilities. During the pandemic, millions of family members had to juggle existing caregiving responsibilities, and often new or different ones because of program closures, with their work. Caregivers have been managing instability and interruptions in services for years. But the proposed national program would provide family caregivers with the job support they need to be there for their loved ones for the first time. We are working with Congress to turn this plan into legislation, that once again, will impact the lives of millions of people with disabilities and their families.

Improve the Supplemental Security Program

And in his campaign platform, President Biden recognized the importance of SSI for people with disabilities and the desperately needed fixes to a program that has not been updated in decades. He proposed increasing benefit levels to the Federal Poverty Level, asset limits, and income rules, in addition to eliminating harmful rules that prevent people with disabilities from getting married or help from family members. These long-overdue updates would provide the economic support that people with disabilities need without trapping them in poverty.

The infrastructure that supports people with disabilities has been and is crumbling—just like many of our roads and bridges. We have an opportunity to give direct care workers a raise, expand HCBS services, support family caregivers, and update SSI. Congress must take this opportunity. Our #CareCantWait any longer.

 Tell Congress #CareCantWait and to pass the Better Care Better Jobs Act now!