Black and MS
I have been sitting on this. This issue has been brewing in society since I was born and had been bound to erupt.
Experimentation with Henrietta Lacks, an African-American woman who scientists found in her cells resulted in the HeLa cell line, one of the most important discoveries in medical history. Doctors, without consent, extracted her cells and used them for scientific research. Then there is The Tuskegee Study of Untreated Syphilis in the Negro Male, a 40-year unethical ruse, resulting in the grave mistrust of the healthcare industry, still sensed today in the African-American community. Nearly 600 African-American men in Alabama were deduced by false medical treatments and free meals, furthermore experimented on and subjected to inhuman torture credited to “research”.
Coping with MS as a black woman? There is an obligation black women already feel indebted to oblige with. Being a mother, a caregiver, wife, mother, aunt, and unfortunate victim. It is indescribably suffocating.
It has taken me some time to digest my disgust, anger, and resentment for the past, recent, and future events that will make me question my purpose and existence as an African-American woman with a disability.
Diagnosed with multiple sclerosis, two weeks prior to my 25th birthday was the biggest bitch slap in the face. At first startled AF I immediately googled, “will I die?,” and “what IN THE HELL is MS?”
Type-A, African-American millennial perspective thought “👆🏾it’s not an STD. 👆🏾 I won’t die tomorrow.
NEXT struggle!”
Considered a first-generation scholar the weight of “but you still better make it,” lingered and can sometimes haunt me a bit today. Finding out I have an autoimmune disease that invisibly cripples my lungs on temperatures above 73, makes short-distance walking seems like a marathon in hell and Big Pharma, medicines that are supposed to help, but actually hurt.
It can sometimes be just TOO MUCH.
Framed as Teflon, being a black woman with MS—a disability, is complex. With recent events exposing the “elephant in the room”--the systemic injustices towards Blacks and African-Americans, centuries-long burdens due to suppression, mental abuses and false stigmatization of my entire race is belittling. Everyday being reminded that the level of quality health care and most importantly my “freedoms” are chosen by the color of my skin. I am reminded daily and it’s infuriating.
Finally, we are recognized, with a long journey to still be taken ahead. After all, though slavery ended more than 400 years ago, I was stillborn into civil unrest and society's complications. We have, as a people, have and continue to bear with the many tragedies and burdens because of the color of our skin.
Being black and disabled simply feels like double oppression. But we, I, must remain resilient. We, I, must remain warriors against this disease and the systems against us.
