Author: Leah Smith

The National Center for Disability, Equity, and Intersectionality

Who We Are
We are a group of people with disabilities, family members of people with disabilities, professionals, and collaborators committed to learning and teaching about the interests, needs, and wants of people with marginalized identities and lived experiences of disabilities. Five partner organizations founded our Center.

What We Do
The National Center for Disability, Equity, and Intersectionality identifies and works together to reduce inequities in healthcare, community living, and justice for people with disabilities. The Center: (1) amplifies the voices of people with disabilities, (2) creates materials to impact positive change, and (2) shares information with people with disabilities, their families, their communities, and policymakers.

How We Work
We convene a Community of Practice (CoP), which is a group of people collaborating to dismantle systems of ableism, racism, cisgenderism, and other forms of oppression. The Community of Practice will meet monthly and may work between some meetings to develop resources and tools. The Center is also home to the Changemakers Coalition, which supports the diversity of youth with disabilities working for a more equitable future.

How Can You Join
If you are interested in joining the CoP, e-mail Leah Smith at leah.smith@cchmc.org. To find out more about the Center, visit our website and follow us on Twitter and Facebook.

The Center for Dignity in Healthcare for People with Disabilities (CDHPD) submits the following comments to Communications Equality Advocates Petition for Reconsideration.  CDHPD aims to reduce healthcare inequities faced by people with disabilities and is composed of partners from multiple University Centers for Excellence in Developmental Disabilities (UCEDD), medical and advocacy organizations. One of our four focus areas includes reducing healthcare inequities in mental health and suicide prevention. Thus, we are committed to ensuring that any system aimed at addressing suicide is accessible for all. 

The Center for Dignity in Healthcare for People with Disabilities mourns the death of Michael Hickson, a 46-year-old man, husband, and father of five. Mr. Hickson was a Black man who acquired spinal cord and brain injuries in 2017 after a sudden cardiac arrest. Like so many in our country ravaged by the current pandemic, Mr. Hickson sought care from his local hospital for treatment for COVID-19. He had contracted COVID-19 from a staff member of a nursing home. Mr. Hickson was denied treatment based on the belief that treatment would not improve his quality of life. 

Mr. Hickson’s wife, Melissa, recorded and posted a video of the doctor explaining why care was denied. An unidentified doctor is heard saying, “So as of right now his quality of life, he doesn’t have much of one.”

Melissa asked, “What do you mean? Because he’s paralyzed with a brain injury he doesn’t have a quality of life?” The doctor responded, “Correct.”

The Hickson family’s tragic loss places a spotlight on the false conclusion that life with a disability isn’t one of quality. The Office for Civil Rights released a memo in March 2020 stating, “Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgements about a person’s relative “worth” based on the presence or absence of disabilities or age.” Despite this clarification of civil rights in healthcare settings, these inequities persist; in this case and others, they cost the lives of Americans with disabilities.

The Center for Dignity in Healthcare for People with Disabilities was founded to correct the misconception that there is not value or dignity in life with a disability. Mr. Hickson was a cherished husband, father, and person. We denounce the denial of care, during this pandemic and always, explicitly on the basis of disability and the biased belief that a life with a disability is not worth living. We call for more just and culturally competent healthcare for all Americans, including those with disabilities.  

For more information on how to join the Center for Dignity in Healthcare for People with Disabilities in the fight against medical discrimination and ableism, email thinkequitable@cchmc.org. Learn more about your rights during COVID-19 here.