#ADA 2016 While Black Revisited: In Memory of Elsie Lacks

Image of Elsie Lacks, a small Black girl in a
plaid dress, white shirt. socks, and shoes.
Her hair is straightened.
Credit: Lacks Family

I read the story of Henrietta Lacks that made Rebecca Skloot famous. The family descriptions of Elise Lacks, Henrietta’s immaculately cared for, nonspeaking daughter (in the header photograph) who had epilepsy and cerebral palsy, show what Skloot and the Lacks family didn’t know but anyone familiar with autism would have guessed.  There was a possibility that Elsie Lacks may have also been autistic.

Her sister Debbie did not know where Henrietta placed Elsie when Henrietta’s cancer became too advanced to care for her, and she spent years trying to find out what happened to Elsie, hoping she was still alive and Debbie could bring her home and care for her as her mother had. The horror of discovering what Hopkins medical researchers had done to Elsie and all those Black men, women, and children diagnosed with epilepsy at the Crownsville State Hospital, the only mental institution in Maryland for Black patients, traumatized Debbie. She never fully recovered from the shock of what she learned that day.

A final, heartbreaking photograph of a much older Elsie taken after she was experimented on and mistreated is so distressing that I can’t post it here. Debbie Lacks later died of a heart attack. Before her fatal heart attack, Debbie Lacks made certain that a grave was made and a funeral held for her beloved sister Elsie. Her body, like many of the black bodies of those who suffered and died at Crownsville, was most likely given over to University of Maryland medical school. Even in death, the black body was not allowed to rest in peace.

So now I am going to say the unpopular thing, the incorrect thing. For the memory of Elsie and all those Black people with psychiatric disabilities who suffered and died in places like Crownsville before and since.

The grave Debbie Lacks had made 
in Memory of Elsie Lacks 

The biggest myth in the conversation about mental health and African Americans is that we are ignorant of psychiatric disability, that we believe our myths, and that families don’t speak of mental health or reach out when we need it. My stepfather’s family was open and upfront about the larger family’s mental health challenges, traumas, and worked together to keep members with psychiatric disabilities active parts of the family and protected them from police, self-harm, and harm from others. When it became clear that some family members needed professional help, the family sought help.

Generalizing all African American family mental health experiences across socioeconomic and cultural subgroup constellations is wrong and sends the wrong message to us at a time when we have had enough of being gaslit into accepting outside views of what our people and our culture of mental health is by a government that allows systemic racism to continue without accountability and harm to rain down on our people while we watch. Following this lack of action with demands to our people that they seek mental health support is horror story irony.

Having a national conversation about African American psychiatric disability, in this moment of extreme racism, while blithely brushing aside the fact that our government is not protecting those who are poor and Black from systemic racism is beyond inappropriate.

Believe me, we are all aware of psychiatric disability. This is not the time to deconstruct the resilience of our people to serve any purpose, regardless of the good intentions behind such efforts. The underlying message being sent to those who are poor and Black is that they are being told to out themselves as also having a psychiatric disability, without having established any protection for said individuals to retain their parental custody rights, protection from involuntary incarceration in psych holds, and mental institutions, or protection from further redlining based upon the additional label of psychiatric disability.

We live in the age of policing for profit, blatant racism, blatant ableism, a resurgence of legalized euthanasia calls for increasing institutions with researchers lobbying for the right to experiment on institutionalized people without their consent and loss of civil rights. African Americans in poverty are already in precarious positions. This approach to psychiatric disability is the wrong one at the wrong time, particularly since the federal government has been unable to demonstrate any ability to protect African Americans who have died from racist attacks or excessive use of force.

The DOJ has failed to try a single case in which unarmed black people have died, both during police engagement and when walking down the street since Trayvon Martin’s murder. Now I'm supposed to believe that our people, particularly our young men living in poverty, should declare they have psychiatric disabilities and the historic horrors and abuses that occurred in places like Crownsville State Hospital, for which to this day, neither the state of Maryland nor Johns Hopkins School of Medicine have apologized, will not be repeated?

There can be no going forward without establishing enforceable protections for all people with psychiatric disabilities. There can be no going forward without apologizing and taking responsibility for the past.

There has been no justice for our people. But they are now being asked to risk themselves further and trust those who oppressed them in the past again with no apologies and no guarantees of justice if such abuses recur?

Trust them?

Really?

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References:

Rebecca Skloot’s ticket to fame: The suffering, death, and Immortal Life of Henrietta Lacks: http://rebeccaskloot.com/the-immortal-life/

The institutionalization, suffering, and death of Elsie Lacks as part of the history of Crownsville State Hospital: http://www.capitalgazette.com/cg-tragic-chapter-of-crownsville-state-hospitals-legacy-20140730-story.html

The formal request led by the ACLU from multiple organizations to then Maryland Governor Martin O'Malley "to investigate and publicly acknowledge the historical mistreatment of African-Americans in the state’s mental health system, particularly at Crownsville State Hospital, which, for half a century, was the only state hospital to admit significant numbers of African-Americans." http://www.aclu-md.org/uploaded_files/0000/0453/crownsville_8_2_13_finalwsigs.pdf

http://www.baltimoresun.com/news/maryland/anne-arundel/annapolis/bs-md-ar-crownsville-black-caucus-20130918-story.html