The last sessions of Crip Camp Virtual 2020 based off of Netflix’s documentary of the same name (highlighting the origins of the disability justice movement in the United States of America) book marked another virtual conference I attended with young adults with rare disease and disabilities called One Rare, another first of its kind actually hiring speakers with the illnesses and attended by adults with the illnesses only.
I am thinking and feeling quite a lot these days about where I share my story and for what purpose I do, in addition to who it serves to reveal my narrative and if it will really be for those living like me and those who will be like me when they are adults (dare I say—for the children?)
As Julia Bascom and Vilissa Thompson revealed social work to be more expansive than schools, clinics/hospitals, and jails (micro) and also includes systems and advocacy and policy and strategy (macro) we as the largest minority group in the USA (10% diseased/disabled) need to realize what is a “disability” organization and what organizations are actually “disability-led”.
As I reiterate from other posts: are the organizations in the rare/chronic illness you want to support majority-led by people NOT living with the illness (“disability” orgs) or are they majority-led BY people living with the disease? This can be legitimately an issue in some rare spaces as many rare diseases are founded by non-affected parents and several rare diseases do not allow children to grow into adulthood.
However, there are several that have significant portions of adults living with a disease that up until the 21st century didn’t have an adult population. It is to those adults we now want resources and support allocated to in addition to livelihood and support systems. Non-diseased persons do not need an organization to address their needs nor do they need platforms to center their voices as the world already hears them and addresses how they experience life.
The world has never seen disability as competent, intelligent, beautiful, worthy, sexy, and other adjectives typically given to the able-bodied from birth to death. If caregivers/parents need support and aid, an organization most definitely can hold space for this, but not at the expense of overriding the people living with the disease that need representation in education, jobs, marriages, and parenting.
This issue ties hand-in-hand with white-led organizations verses Black/Indigenous/People of Color-led spaces. With all the performative nods to anti-racism, many rare/chronic organizations are remiss in spaces consistently white washing over the disabled lives of people of color in the United States and abroad.
I encourage my readers to check out Imani Barbarin and her work behind the hashtag #AbledsAreWeird and Keah Brown with her work behind her hashtag #DisabledAndCute as well as Alice Wong and her work behind #CriptheVote.
Think about all the different intersections and tools you can use in how you implore people to think about disability such as race, gender, sexuality, class, religion, and education.
As a white disabled female, I come across many stories like mine and want to keep learning about the different privileges and oppression culminating from disability.
Sins Invalid is a Facebook page that looks at the intersections of disability and the performing arts with people of color and queer people centering. Lets keep lifting each other up as humans in this earthly life!
Haven’t seen Crip Camp yet due to no Netflix account? It’s on YouTube now!