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Black Disability: Yesterday, Today, Tomorrow
2020 is my milestone of 50 years of Black Disability Advocacy. I wanted to talk about what led me to the work, my experiences and where we are now. I invited fellow lifetime advocates, Rev. Calvin Peterson and Leroy Moore to join me in their observations and where things stand today
50 Years of Black Disability Advocacy
by Jane Dunhamn
Black disability advocacy has grown rapidly over the past 15 years.
My work began 50 years ago as a parent, then advocate and lastly Black disability advocate. During the early years my focus as a parent was to provide the opportunities for the best life for my daughter. I learned quickly that the same race issues that prevailed in society also existed in the disability community.
Being a young adult of the 60’s I was closely tuned in and vocal about how discrimination played a part in the social, civil and daily lives of Black folks. My daughter was born in 1970. It took the first 10 years to learn about her impairments, health issues and service systems agencies. Parents whose children are born disabled are immediately thrown into a world of systems that they know nothing about. Yet, immediately after birth we must learn quickly how to navigate these systems if we want our child to have a life of work, play, success, joy and challenge. I was extremely worried how race discrimination would play in these systems. And indeed it did and continues to exist.
There were many instances in my personal experience. I will describe a few that blaze most in my memory. My first encounter was 50 years ago. I went alone for the first visit with the pediatrician. The doctor said “we don’t know about these kids, they usually live to be 3 or 4 years.” His harshness shook me and I wondered if his communication was as cold, thoughtless and indifferent with White mothers. 45 years ago a renowned Philadelphia pediatric orthopedist told me that Black families could not afford his private school. During the drive home I sobbed out of control so much that I was pulled over by a policeman because obviously my driving was as erratic as my tears. There were countless encounters throughout the years but these two prepared me early to be ever vigilant.
Another milestone occurred years later while my daughter was preparing to attend graduate school in Washington, DC. My state service agency had 2 years before graduate school to put in place personal assistant services. They said they could not find a mechanism to transfer funding for her services. I encouraged my daughter to go on to graduate school and I would take off from work and be her assistant. By this time for 20 years I had become a strong advocate. However, I had not connected the dots that my state had many children in out-of-state placements and was able to facilitate funding transfers for children with behavior disorders. All I knew was something was not right, not only did I know the system, but I personally knew the people who were in charge of making it happen. Could this be that my smart Black daughter was not supposed to achieve graduate level of academic success? I did not have time to think about it but put into action my going to graduate school with her. After the second week, with still no success from my home state, I called DC Mayor Marion Barry’s office. Within two days the mayor’s office ensured my daughter had assistant services and I returned home. Would this have happened if the Mayor was White? Neither the Mayor nor his staff knew us, only that we were Black and in need.
For the past 20 years after my daughter completed her education and moved on with her own life I began to work full time at Black and disabled issues. Always in mind, no matter what the issues or how complex the disparities, in the context of disability, that the work would be advocacy. The focus was on each individual and their family to have a life that is rich and rewarding throughout all stages of development.
Doing this work I met many amazing people who were dedicated to the issues of Black disability. My two long time allies are Leroy Moore and Rev. Calvin Peterson. Each of us talked about and presented across the US on the issue of race, identity and discrimination. Each of us knew from living in our skin the impact of discrimination and civil rights and therefore it was an easy connection with disability. In the 70’s there was very little discussion about Blackness and disability. There was also little to no representation of people of color on the boards of disability non profits. When I attended meetings or conferences I was met with politeness but certainly not welcoming. One need only remember what the telethons looked like. Slowly by the 80’s there was a sense of acceptance of participation by people of color. This lasted until the 90’s. As a result of more participation of people of color, especially we Black folks began to make noise about having to leave our race identity and issues at the door. We were clear about how the intersection of racism and disability impacted the well being of Black disabled folks and their families. It is because of this work, so long ago, which was met with much resistance, that today we can talk about the need for research, and advocate for Black disabled issues.
We also learned we needed to talk about disability identity and to include culture and the arts just as culture and the arts had moved the Harlem Renaissance forward.
I worked toward the intersection of racism, service systems, identity, and culture. All that is needed for Black disabled people to be strong in who we are is the knowledge of where we come from, community, family, faith, right to services, healthcare, equipment, and civil rights around access.
Each of us in our own way took this message across the country. I am thrilled that over the past 15 years that there has been an insurgence of Black disabled academics and intellects. We need them to continue to examine the issues, new and old. We need their work as tools for advocates on the front lines working for change. What saddens me deeply is the lack of acknowledging the work of those that came before. Just as in Black Studies a major component was including community leaders in conversations of higher learning, it is important to continue this tradition in the Black disabled community.
Segregation is Still Present in the Black Community
by Rev. Calvin Peterson
I was born with cerebral palsy in 1948. My family gave me a lot of love! I received the greatest gift a parent can give their child, the love of self. In order to love others, you must love yourself.
When I became a teen I was confronted with a rude awakening. That is it’s very hard to love someone who seems to hate you.
The agenda of mainstream disability groups is to segregate African Americans with disabilities from opportunities to equitable services and opportunities. When I came across NBDC I breathed a sigh of relief. We have collaborated and shared triumphs and struggles for the past 10 years.
One of the most powerful issues that myself and my organization, Disabled in Action (DIA), has worked on for over 40 years is the Black church. Their views of Black disabled people do not coincide with God’s law, the law that compels us to love one another. My disability activism, and professional work as an ordained minister, revealed how the Black church is a spiritually segregated institution. My commitment is to continue to move forward with change in the Black community until disability segregation is eradicated in our Black churches.
A Lifetime of Black Disabled Activism
by Leroy Moore
My work, over 25 years, has shown me why the Black community has made only small steps to change their attitudes toward disability. There are many factors, for example, movements and organizations that pushed for change in the US continue to consciously or unconsciously practice racism that keep Black disabled people from fully enjoying civil rights, services, changing perceptions and cultural work. As the disability rights movement of the 70’s moved from awareness to civil rights, to independent living, to disability studies and arts and culture in dominant communities, I noted that the greater Black community did not make any changes towards disability.
The Black community had no awareness to access from steps to ramps, although all the other phases of the disability movement had benefited all disabled people. The Black community as a whole never had a strong educational campaign to help combat the decades of wrongful disabled teaching, abuse/neglect, hiding, charity and overcoming disability. There continues to be a disconnect between overcoming a disability being as wrong as overcoming one’s race.
Because there was not a national effort in the disability rights movement to address the attitude disparities in Black communities Black disabled people continue to work independently person by person, community by community to do disability awareness education. It is time for an educational National Black Disability Awareness Campaign.
Many of us escaped internalized ableism* because we were exposed to the disability rights movement and our parents fought for our rights and their involvement in the disability community and organizations. We not only know about the advancements that the disability movement has made but are using those advancements to try to bring up the rest of the Black community.
Although today, there are many more Black disabled people and activists we have to consistently work against what I call Black ableism within our own Black community, families, institutions, movements and media. Many of this generation of Black disabled activists maintain their jobs in the well resourced disability service agencies, advocacy, and academic departments, by many times not rocking the boat so they down play the work of disabled people and their parents that came before them. This is especially true when the work is advocating for a separate movement, empowerment, education, service delivery and highlighting racism in the disability rights movement. For example, in my twenty plus years advocating, organizing, writing and speaking on, first people of color with disabilities, then specifically Black disabled people these were some experiences I encountered:
In 1998 I received hate mail and calls because I started an organization for disabled people of color
In 2007 I received hate email because I started Krip-Hop Nation and now
In 2020 I receive emails asking why my books and activism only focus on Black disabled issues, and being called racist on social media because my work now is specifically on Black disabled people.
I have seen White disabled "leaders" continuously receive funding although their racists behavior and attitudes were well documented. I have seen White disabled and non-disabled scholars consistently write papers, articles and studies on/about Black disabled issues that receive national attention. Some dominant organizations hire and/or assist chosen Black disabled activists, thus splintering the Black disabled community. When those folks speak up, challenge and define Black disability issues to those organizations they are threatened, ostracized and emotionally and financially abused.
Many Black disabled activists, cultural workers, and parents have tried again and again to work in our Black communities but continue to be wounded by them. This is why I think today in 2020 it is a lot easier to work in progressive White dominated organizations although racism is still there. Some of us might feel that we have a slight opportunity for a fair salary, to establish, to grow and lay down roots.
To say the above, is not saying that there is nothing out there for Black disabled people and specifically those who are activists, artists, musicians, journalists that are doing outstanding work. However, from my experiences there are only a very few solely working on educating the Black community. We work to undo not only Black ableism but to point out racism in the disability community and so much more. Every day that goes by the Black community becomes too harmful and almost obsolete for Black disabled people. Other countries do national disability campaigns. The work now is to establish an educational National Black Disability Awareness Campaign which is supported by Black national organizations, media, and colleges and driven by Black disabled people and their families.
*Ableism is discrimination and social prejudice against people with disabilities or who are perceived to have disabilities. Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled.