On The Dangers of Faux Solutions to Catastrophic Encounters with Law Enforcement

Image of disabled Black activist & mother Korryn Gaines with
her five-year-old son Kodi. Korryn chatting on her
Cell phone with Kodi chatting happily on her lap
Digital art rendering K.Cevik. 
Original photo Instagram

It is so difficult for me to write about this topic repeatedly.
But right now, Senator Chuck Schumer is currently battling the DOJ over who will control the funds for the surveillance of autistic children and adults who wander under Kevin and Avonte's Law.

This is the latest chapter in the continued tragedy of another crop of ID tag monitoring initiatives paired with autism awareness training. These initiatives are meant to give autism parents that false sense of security that their offspring won't be harmed in an encounter with police.

I used to believe such training was the magic bullet that would solve this. I watched while one disabled POC after another died at the end of such encounters and wept, realizing I was totally wrong.

Any law enforcement ID program, registry of biometric information and DNA, or other such efforts to reduce catastrophic encounters with disabled community members who are neurodivergent or have an invisible disability label do not help the potential victims.  They may reduce law enforcement risk, and they may make families and police feel better. Tagging humans without their consent and surveilling them does not reduce wandering it may or may not make it easier to find missing autistics. But regarding the death toll of neurodivergent African Americans caught in catastrophic encounters with law enforcement, nothing has changed. They are still dying regardless of how much training, IDs, tracking, or biometric database building is involved.

That means this is not working for our families.

I breakdown when I am forced to repeat the names of every young autistic African American who was shot dead by officers who knew their disabilities, were already trained in de-escalation techniques, were carrying tasers but used guns instead [see Stephon Watts ], and in some cases actually knew the victims personally from previous encounters [see Paul Childs III.] Some of the officers involved in some of the shootings and excessive use of force incidents had histories of prior bad acts that received little or no disciplinary action [see Gilberto Powell’s case].

I want anyone reading this to feel our people's pain. We can only reduce the deaths and irreparable harm when we understand that repeating and mandating solutions that aren't working perpetuate the cycle of harm to disabled Black populations.

All these programs that flip the responsibility for being victimized to the disabled person in crisis and present the solution as somehow being centered on wearing identification, carrying communication cards, or being known to law enforcement as a neurodivergent individual need to leave the catastrophic police encounter conversation. We have to consider what it means to have identification tags hanging all over our loved ones letting anyone and everyone know our disabled folks are vulnerable and excellent targets. We have to approach these things better than mandating solutions without including folk who know what it means to be autistic and marginalized in multiple ways. These people may be invaluable in crafting better solutions. I cannot emphasize enough that not listening to everyone in this conversation is costing lives.

It should not matter whether or not a person is visibly disabled. It should not matter what the respectability factor of a citizen is. We all have Miranda rights, civil rights, and the right to equal humane treatment by law enforcement and criminal justice representatives in our country.

We have all seen enough videos of law enforcement officers dumping visibly disabled people out of their wheelchairs and forcing off prosthetic limbs and crutches from citizens to understand by now that being aware a person is disabled doesn't prevent deaths or excessive use of force during engagement of those in crisis.

The most infamous historical instances of wrongful incarceration, wrongful institutionalization, and eugenics programs always began with asking the future victims to carry special identification, wear visible badges, distinctive clothing, or segregate themselves from the rest of society in very specific ways that allowed them to be easily singled out or rounded up for harm later.

Neither parents nor any other stakeholder in the disability justice conversation should be lulled by the myth that somehow, autistic loved ones will be saved if the police get more disability identification or autism training or autistic offspring have a big red sign on them saying I AM [fill in invisible disability label]. All of these methods of risk reduction depend entirely on the good graces of the officers. They also could actually open an avenue to deflect liability from city and state government by giving them a loophole to avoid responsibility for harm to citizens who won’t or can't carry these extra identity cards. Should autistic children and adults register themselves in law enforcement databases, particularly in a world of racial and ableist profiling? What are the ethical and legal concerns regarding DNA kits given to law enforcement in case an autistic child goes missing in an age where police are grabbing familial DNA without consent to aid in criminal investigations? These are things we must think about carefully before pushing for mandated autism registries and other things that might come back to harm our loved ones.

Think! What makes us believe this when every single disabled person who has died never had the opportunity to show any officer ID or anything other proof of disability because the distance they stood from those who shot them dead was too far to do anything of the sort? I need to reiterate what has been pointed out about the shooting of Korryn Gaines:  "While the Baltimore County Police Department is equipped with a Mobile Crisis Team that "pairs a mental health clinician with a police officer to provide emergency police response to persons in need of crisis intervention," this unit was never called in to de-escalate the situation. Korryn Gaines was shot through the outside wall of her house and her toddler son, who they knew was in her arms because she was live-streaming this, was shot in the process. What good would Korryn's ownership of  ID with “I am a childhood victim of the lead paint problem that Maryland government refuses to hold slum lords accountable for and have a permanent intellectual disability as a result” have done here?

The task before us is to reduce encounters altogether, spend money on community-based crisis response and respite centers, and educate communities about how to be more inclusive of their neurodivergent members. Mobile crisis response teams do no good if they aren't deployed and tactical assault teams are sent instead.

 I have so much going on right now but this issue upsets me so much I made the time I frankly don’t have to write this. Again. If we don’t address the true problem our neurodivergent loved ones will keep paying the price with their lives.

So let's define the true problem regardless of how uncomfortable it makes us. How do we help our loved ones avoid catastrophic encounters with any law enforcement officer who may have committed previous bad acts involving excessive use of force without being held accountable for them or who may be ableist, racist, transphobic, or otherwise biased against those in the community who are marginalized?

The problem is not a problem of awareness of disability, lack of training in the identification of invisible disability, or any other method that blames a victim for not appearing disabled enough. Again, the police were aware of Korryn Gaines' psychiatric disability but did not choose to deploy the Mobile Crisis Team. Skewing the definition of the problem prevents sustainable solutions and costs lives.

It's time to end misguided efforts at mandating faux feel-good options that give no real safety but provide great optics for organizations and generate income for individuals promoting them in conferences and paid training programs. Define the true problems and help drive change to create real protections that save lives. Our loved ones are dying. Help take the first step away from this road to hell paved with our parental and professional good intentions.

#AutisticWhileBlack: At the Intersection of Ableism and Racism

 "Microaggressions are the everyday verbal, nonverbal, and environmental slights, snubs, or insults, whether intentional or unintentional, that communicate hostile, derogatory, or negative messages to target persons based solely upon their marginalized group membership"

from Diversity in the Classroom, UCLA Diversity & Faculty Development, 2014

Discussing racial microaggression is always challenging. Anyone who is rightfully called out for any deliberate or unintentional act of racism that to them may appear slight will deny their misstep in defiance of being branded a racist.

This fear of the consequences of being labeled racist has made having an open discussion about this class of oftentimes unintentional insult difficult. Attempts devolve into a  series of skirmishes in which those at fault react by gaslighting accusers into silence, then flip the script and call themselves the victims of hypersensitive minorities policing political correctness. This is something that perpetuates a kind of under the radar racism that is supported by counterattacks like the chastisement of so-called  'victimhood culture.'

Despite all this,  I am entering this moment of trying to speak truth to power through this example to open a dialog that might help reduce such behavior in the autism community with no hope that it will be understood much less heeded.

We are living in one of the worst times for racial aggression and maltreatment since the beginning of the New Jim Crow era.

Seeing racist constructs in an essay written by an author appropriating rare genetic disorders linked to people our race as a convenient literary allusion for any argument adds an additional layer of sad disappointment.

That was my initial reaction to such an allusion used in a disturbing essay about autism labeling by Stephen Prutsman.

This is the paragraph of his essay I mean:

"Consider for a moment if “African American” and “Sickle Cell Anemia” were grouped together; let’s call this hypothetical grouping “AASCA." For some, it would be a beautiful identity full of rich culture, heritage and uniqueness. For others, it is a serious blood disorder found predominately in people of African descent. One can only imagine the confusion, misunderstanding and pain that would ensue if scientists were to lump both under the same category."

The use of the term "African Americans" as a monolithic grouped object and "Sickle Cell Anemia" as an objectified construct in a literary allusion in this manner promotes the subliminal message of the "diseased Black" vs the "healthy Blacks." The reduction of a marginalized group to a construct and placement of a disabled subgroup within that population in implied opposition to the nondisabled group is not only ableist it is a dehumanization created solely to instill discomfort and guilt needed to win a written argument. This falls into a specific category of racial microaggression called microinvalidation.

No one who shares my race would use African American and Sickle Cell Anemia in any allusion about anything because right now, there is a crisis causing premature deaths in African American Sickle Cell patients directly due to race-related disparities in health care, health research, and education of medical teams.  Sickle cell patients suffer bouts of excruciating pain as impacted organs fail, and their suffering is frequently ignored by ER staff believing African Americans have a high tolerance for pain, an old stereotypical holdover from the age of using and abusing the Black body for medical experimentation. Add to this the stereotype that African Americans may be asking for opioids because they are more likely to be drug addicts and you have a perfect storm of racism.

Figure A shows normal red blood cells flowing freely in a blood vessel. The inset image shows a cross-section of a normal red blood cell with normal hemoglobin. Figure B shows abnormal, sickled red blood cells blocking blood flow in a blood vessel. The inset image shows a cross-section of a sickle cell with abnormal (sickle) hemoglobin forming abnormal strands (Information & media from U.S. Department of Health & Human Services) 

The allusion Prutsman makes of lumping  the rare genetic pool of Sickle Cell with the total population of African Americans makes absolutely no sense when in fact the ability to gain the  genetic counseling, services and supports African American Sickle Cell trait and disorder clients need absolutely requires identifying as either a carrier of the trait, or a patient needing health supports and services throughout their lives. Mr. Prutsman's allusion appears to show his complete lack of understanding about invisible and apparent disability and the importance of identity in gaining access to lifelong services and healthcare supports.

Every marginalized group within any community progress by reclaiming or owning labels used to limit or marginalize them and empowering such labels by making them part of a greater individual identity. The term "Black" was reclaimed when I was growing up, and as I and hundreds of other students of color in my generation entered all-white schools to insults, attacks, and abuse, James Brown's "I'm Black and I'm Proud" and similar reclamations of  skin color as identity kept our heads up.

Sickle Cell Trait and Sickle Cell disorders in all stages are both the disability and the disabled identity of those who are diagnosed.

There is a long, painful history involving the African American community and modern medicine and the lack of advancement in the supports and treatment of Sickle Cell patients in adulthood is part of it. We have been subjected to experimentation, sterilization without consent, endemic disparities in medical care that have created another race-based health crisis in America. We women who are African American are dying in pregnancy and childbirth in numbers not acceptable anywhere, much less in a so-called developed nation.

I have spent years trying to think of a way to explain the insult in stereotypical racial microaggressions ingrained in white society that use the monolithic construct of "African American" as an object in literary allusions that dog whistle racism as a method to make an example that they believe will offend others enough to hammer some trivial point home. In this example, I can only guess the author intended  to invoke a genetic illness which in his mind would evoke sufficient pity and validation as a catastrophic enough condition to make his essay readers uncomfortable when paired with "African American."

 But in this moment, where white people are calling 911 on young girls of color selling water, on this anniversary of the death of Tamir Rice, it is not acceptable to use African Americans and rare disabilities in any attempts to dominate the autism or any other unrelated conversation.

Researchers believe that the cumulative impact of racial microaggressions over the lifespan of a marginalized group are more damaging to minorities they target than any single blatant incident of overt racism. There are now ongoing attempts to make POC aware of these microaggressions so that they can act to reduce their impact. At the same time, professionals are trying to educate perpetrators of racial microaggressions while letting them know that intentional or not, such acts cause widespread harm to marginalized people.

Mr. Prutsman could have found any number of literary allusions to make his point without the misuse of African Americans and disabled African Americans. Futhermore, as the Black mother of an autistic son, the use of such offensive constructs alienates me and my disabled son from the autism conversation and this is unacceptable, because we have a right to representation in this community.

I created the hashtag AutisticWhileBlack because macro and microaggressions are embedded in the structure of autism advocacy and it needs to end. Let's begin to make to an effort to improve diverse representation in the autism conversation by not repeating combined racist-ableist gaffes like this one.


Further Reading:
Racial microaggressions in the life experience of Black Americans
By Sue, Derald Wing, Capodilupo, Christian M., Holder, Alisha M. B.
Professional Psychology: Research and Practice, Vol 39(3), Jun 2008, 329-336

Disparities in care of Sickle Cell Patients
Sickle Cell patients suffer as disparities in care and research persist

http://c-hit.org/2018/05/10/sickle-cell-patients-suffer-as-disparities-in-care-and-research-persist/

 Sickle Cell Patients Endure Discrimination, Poor Care, and Shortened LIves

https://www.npr.org/sections/health-shots/2017/11/04/561654823/sickle-cell-patients-endure-discrimination-poor-care-and-shortened-lives

 Sickle Cell Patients, Families, and Doctors Face a FIght for Everything

https://khn.org/news/sickle-cell-patients-families-and-doctors-face-a-fight-for-everything/

The Healthcare Crisis of Black Mothers
Black Mothers Keep Dying After Giving Birth. Shalon Irving's Story Explains Why
https://www.npr.org/2017/12/07/568948782/black-mothers-keep-dying-after-giving-birth-shalon-irvings-story-explains-why