Facebook Notes: Thank You, Shades of Noir

Kerima Cevik

August 13  · 2 min read  · 

Shared with Public

This is a note about supporting and accomodating the needs of disabled creatives. I am in this magazine because team members supported me during a series of health crises and opened a path for me to contribute. I want to talk about how this came about because I have lived experience of how important it is to reach out to disabled people of color and accommodate their disabilities so more voices will be heard going forward.If you believe in my voice and find benefit in my writing, please Tweet a thank you to the team at Shades of Noir. Before the pandemic and the collateral damage it continues to cost our planet, Shades of Noir offered me a chance to submit an article for this publication. I was on board with any project that included Leroy Moore. But Mu became ill, then it looked like I was on my way to the hospital again. Overwhelmed, I emailed the magazine team and let them know that I would be unable to meet their submission deadline.

Disability, as you all know, means there will be periods of time, like this week, when the pain will overwhelm, breathing will be a war, tasks will be put aside for the sake of the care and support of your offspring. So I want you all to feel what a miracle my face in this publication is. And understand that if Shades of Noir did not live their standards I would not be in it.
I was given a chance to submit an article for this publication. But I emailed to let them know I could not meet the submission deadline. What happened next was an immediate response from the team apologizing for not emphasizing enough that their team was ready to support and accommodate disabled authors and creatives. They asked how they could assist in helping me complete my submission. They helped, and told me to focus on healing myself and my son. I put this out of my mind and didn’t know that the submission had been approved. 
But there I am, on page 195 of this publication, complete with a photograph I was so ill I can’t recall submitting. All because I got the support I needed to be included in this issue.

Only Sara Luterman ‘s NOS Magazine and Shannon Des Roches Rosa at The Thinking Person's Guide to Autism were as supportive and understanding of the realities of parenting a disabled young person while being disabled and trying to have one’s voice heard. 
So thank you Shades of Noir. If only every publisher was this comfortable with giving the supports needed to have our voices heard.

Peace.

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.

#KripHop As a Change Maker

Back in 2016, I was in a private chat room and witnessed an ambitious, aggressive, disability rights activist dis KripHop and one of its founders, Leroy Moore. The same activist was lobbing ad hominem attacks on me as well, but what matters here is a stain of internalized ableism and hierarchy of disability within the criticism of KripHop as a force for change.

  It was disturbing to witness this behavior from an activist who should have known better. Someone who I presumed was informed about the history of every hip-hop genre as a voice for dissent and transformative change in the world. But disability rights are rampant with this subtle form of internalized ableism, deeply embedded in the presumption of incompetence. This activist should have had our backs. Instead, full of their own view that only certain types of physical disability are somehow more competent to achieve than developmental disability, they trolled this form of delivering the message of civil rights to audiences in a form they are more willing to hear. Said activist probably never heard a KripHop joint.  I posted Krip-Hop Nation's Hub Week performance above so everyone can hear it instead of dissing it in ignorance of how it speaks truth to power.

I chose to write about this last week because I was expecting my KripHop comic book, the next expansion of the KripHop social justice project, in the mail. I had no idea that this would be the week comedian Hasan Minhaj would choose hip-hop as his topic.

KripHop Comic first edition.©Leroy Moore 

In this week's episode of the Netflix series Patriot Act,  Hasan Minhaj used humor to discuss how hip-hop is impacting geopolitics. The most striking moment of this segment was about the THRap hip-hop group  Rap Against Dictatorship, whose protest rap song, "What My Country's Got"  was inspired by Childish Gambino's "This Is America." As rap becomes a resurgent global vehicle to express dissent and artists literally risk their freedom and this lives to speak truth to power in defiance of oppressive regimes, KripHop is still being dismissed by those who hold the largest platforms within our disability justice community while it continues to expand globally just as quickly as mainstream hip-hop.

The music video for "What My Country's Got,"  has garnered 58 million views and counting on YouTube. "What My Country's Got recreates the most graphic scene from the Thammasat University massacre, and was shot in one take.  Thammasat was Thailand's Tiananmen Square protest moment. Imagine the courage of Rap Against Dictatorship to even consider recording and posting such a video. KripHop Worldwide collective rappers globally are possessed of the same valor, and rapping with the same intensity. They take the stage to fearlessly confront stereotypical ableism and demand acceptance as they are. Within a greater movement where the continuance of a very clear hierarchy of disability persists and one's own colleagues don't take the time to educate themselves about the collective and the way it drives change, this project needs such valor and heart.

Sadly missing from Minhaj's discourse was any mention of  KripHop, despite the same critical importance to our causes, our intersected community's culture, and living history. KripHop Nation, given the funding and platforms needed to grow and allow the collective to get its message out to wider audiences, has the potential to be just as impactful a transformative change agent. This begins with our own community members suspending their dismissal and disbelief and supporting  KripHop and other disability justice collectives' labor in the struggle for disability justice. Watching Minhaj's discourse on hip-hop's global impact, in general, might be a good start. Reaching out to founders Leroy Moore and Keith Jones would help too.

Some don't care for hip-hop in general; so that is a preference. But for Intersected disabled folk, this is part of our culture and like spoken word and music, is part of our historical method of delivering truth and expressing dissent. So what we all need to ask ourselves when we are discussing not just disabled culture but activism, is what it means when KripHop is excluded from the disability justice conversation.

There are ways we can all support this cause and make it relevant. Buy the KripHop Comic for your libraries, groups, and projects. Cite it in your academic papers. Invite the KripHop Collective to your universities and all places where folk are receptive to music with a message.

Most importantly, when disability rights activist colleagues diss or dismiss the labor of KripHop or any activist collective addressing the concerns of marginalized community members speak up and call them out on their ableism.

I'm going to go read KripHop volume one to my wheelchair-using disabled brown son.

Peace.

#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

#AutisticWhileBlack The Sacrifice of Andre and Cheryl McCollins

One of the most influential images of all time is the photograph of the beaten and mutilated body of Emmett Till, a teenager from Chicago visiting family in Mississippi, in his simple pine casket.Emmett's mother Mamie made a heartbreaking choice when preparing for Emmett's funeral that changed the course of modern civil rights history.

"Mamie Till was the mother of Emmett Till, who was murdered in Mississippi on August 28, 1955, at the age of 14, after being accused of flirting with a white cashier woman, Carolyn Bryant, at the grocery store. For her son's funeral in Chicago, Mamie Till insisted that the casket containing his body be left open, because, in her words, "I wanted the world to see what they did to my baby." " - Wikipedia

Years later, Carolyn Bryant admitted she lied, and Emmett was innocent.

André McCollins with his mother Cheryl in happier times.
Image of a light brown African American male presenting teen  with crew cut hair
and a sky blue t-shirt smiling beside a mahogany brown skinned African American
 woman with short straight hair  Credit McCollins family

André McCollins is the victim in one of the few videos of students receiving repeated shocks investigators were able to retrieve from the Judge Rotenberg Center. His screams of agony now fuel the rallying cry of disability rights activists and organizations calling for an end to the use of electric shocks on disabled children.

ADAPT is now embedded in Washington DC trying to get the FDA to implement the already approved restrictions on these shock devices. Read about ADAPT's latest effort here.

Cheryl McCollins, faced with Mamie Till's choice, looked at her beautiful son who has never recovered from the harm done him, and decided the only way to  make certain no one else's loved one was harmed was to get the video of what they had done, those 31 shocks that put Andre in a coma, and give it to the press.

She went to court and fought for that horrific tape and won. That single battle, fought by a lone African American mother, and the decision she made to get that video to the public has changed the course of disability rights history.

We don't have any idea what it means to be Andre McCollins, Black, autistic, innocent and irreparably harmed, then having to have the evidence of that traumatic event played over and over because the institution that harmed you and so many others is backed by powerful people who just don't seem to care that this is being done to disabled students.

We don't have any idea what it means to be The Emmett Till of the African American autistic community, have your torture video be used to save others, but be erased while still being very much alive.

Imagine being Cheryl McCollins. She is trying to carry on her life and Andre's care amid threats to keep quiet and still made this choice that Mamie Till made. To live with the doom of seeing over and over again that they hurt your boy to a point of no recovery and you were powerless to save him.  

People are fighting now all around them. Disability and human rights activists to finish this over 30-year fight to end the torture, powerful wealthy families afraid of the idea that they may have to take a direct interest in their abused disabled loved one's life after years of GED shocks to keep their families members locked away and victimized by multiple shocks daily. All the while Andre and Cheryl, and so many other survivors are forced to relive the trauma of what was done to them.

Do you think it was easy for Mamie Till, to make that choice, to show the battered and broken body of her beautiful boy in an open casket, knowing that it would be the image forever linked to his name?

I've forgotten. Some of you wouldn't know who Emmett Till and his mother Mamie were. Before your time, not of your world perhaps. Here:

"Mamie Till was the mother of Emmett Till, who was murdered in Mississippi on August 28, 1955, at the age of 14, after being accused of flirting with a white cashier woman, Carolyn Bryant, at the grocery store. For her son's funeral in Chicago, Mamie Till insisted that the casket containing his body be left open, because, in her words, "I wanted the world to see what they did to my baby." " - Wikipedia

Years later, Carolyn Bryant admitted she lied, and Emmett was innocent.

Cheryl McCollins made Mamie Till's choice. To have Andre be the symbol of harm in one of today's so-called modern day institutions, to show that this is not the path to help our loved ones no matter how violent and out of control we believe them to be, that torture of this nature is not the answer. 

I have conveyed my gratitude to Cheryl. I told her that my state was one of the states sending autistic youth to the JRC. I told her Andre could have been my son. We grieved for the harm done and I let her know what Andre endured will never be in vain.

While we are all out there, telling Andre and Cheryl's story for a cause while others omitted it from any history of autism, remember Andre and Cheryl are suffering as this video is aired again and again and used in petitions and rallies and actions to end the shocks to others. Don't let Andre and Cheryl become Elsie and Henrietta Lacks, dehumanized archetypal objects of their victimization; their lives dissected packaged and marketed to discuss the use of Henrietta's cells rather than for the human value of the lives of a mother who died in tremendous pain from cancer the disabled daughter she gave up to the only institution for Blacks in Maryland, both used for experimentation for the progress of science. 

 Andre lives on despite having never fully recovered from the harm done him.We need to be mindful of this as we continue fighting and invoking his video trauma. Give them respect and remembrance beyond their use as graphic human slogans for a cause, and do so for every surviving victim of JRC GED shock torture.

While we are fighting for justice #RememberAndre. and all the disproportionately Autistic survivors of color.

For Emmett and Mamie Till, Elsie and Henrietta Lack, and Cheryl and Andre McCollins, in heartbroken gratitude for their sacrifice.

----------------------------

About the Judge Rotenberg Center and ADAPT's latest action to end the torture:

http://nosmag.org/adapt-protests-at-white-house-to-stop-the-shocks/

Follow National ADAPT on Twitter and Facebook to learn how you can help 

#AutisticWhileBlack: The Terrifying Case of Rebecca Hall

Screenshot of a photo of Rebecca Hall, presented
by her twin during a press conference. Image of
a beautiful Autistic African American young
Woman with center-parted long black hair and
a matching blacktop. © Chandler Family

It was 25 degrees outside that Tuesday, January 9th, 2018. Psychotherapist Imamu Baraka was leaving his office across the street when he saw staff from the University of Maryland Medical Center Midtown in the process of dumping a woman at a bus stop in only a hospital gown and socks. Furious, he began recording the event on his cell phone, called 911, made certain the woman was readmitted to the ER, and concerned no one would believe him, uploaded the video. The frightening footage, evidence of a heinous practice called "patient dumping" went viral.

A week before, Cheryl Chandler had reported her 22-year-old daughter, Rebecca Hall, missing.  Six years ago, Rebecca had been diagnosed with Asperger's and a psychiatric disability.  She had been placed in a group home in Charles County, MD, but later evicted from it on the excuse that she refused to take her medication. Her family enrolled her in what they were told was an intensive inpatient treatment program. How Rebecca went missing from there is not clearly understood.

Her mother was browsing the Internet when she happened upon the trending video and played it. She doesn't remember what happened after the moment she recognized the young woman in the hospital gown on the street was Rebecca. According to family members, she screamed her anguish. Ms. Chandler immediately called the medical center demanding to know the location of her daughter but they refused to tell her. Finally, after calling them, the police were able to locate Rebecca at a homeless shelter.

During a press conference in Rebecca's attorney's offices, unable to hold back tears, Rebecca's twin sister Rosslyn read a letter from Rebecca, thanking everyone for their help, telling everyone she was safe. Ms. Chandler was adamant that Rebecca was not homeless or uninsured, and was very much loved. It was Ms. Chandler who had hired an attorney for Rebecca.

There is such massive failure at the core of what happened to Rebecca. These nightmarish events, that frighten every stakeholder in our community, make it clear that every system that is supposedly in place to help our disabled children throughout their lives is broken. So for Rebecca, I want to not just point out what it means to be #AutisticWhileBlack, but also touch on alternatives steps to eventually ensure that the rest of the lives of our loved ones aren't scenes from American Horror Story.

Late Diagnosis
Rebecca did not receive a diagnosis of Aspergers (a diagnosis that should be ASD because the term Aspergers is no longer part of the DSM-V) until she was 16. Years of coping with a disability no one was aware of might very well result in trauma and subsequent psychiatric disability.  The extreme late diagnosis of African American women and girls, who are already subject to trauma from racial discrimination, colorism, and institutionalized misogyny, requires trauma-informed care solutions. Although the Baltimore City Health Department makes itself available for training in trauma-informed care, UMMC staff has either not availed itself of such training or UMMC is not administrating it. My question here is why?

Group Home Trauma
Then there is the myth that the best care for a disabled young adult with psychiatric challenges is the enforced compliance and regimented schedules of institutionalized settings such as group homes. Peer mentored community living spaces are more cost-effective, empower disabled clients with life skills, and integrate them into their communities such that they are known community members who are simply people neighbors and business owners care about and therefore hire, respect, and accept. The idea that the goal of group home residency is passively ingesting medications and being compliant drives resistance and fear in residence.  We do not know what compelled Rebecca to refuse her medications. She certainly did not wish to be homeless.  Who would? So the question should not be why was Rebecca 'non-compliant' so much as why is Rebecca's trauma, along with the agency she was accustomed to until her diagnosis day, being ignored?

We must move past the stigma and fear of psychiatric disability as it is portrayed in media and grasp that autistic adults who also carry a psychiatric disability label have the same rights as any patient does to safety, respect, and agency in their care.

Mental Health Care Inequity and Disparity
Then there is the injustice of health care inequity and denial for autistics of color in general and those who are autistic while black in particular. A canyon divide in quality of care for autistic children and adults of color and those of affluent white families exists. African American disabled children and young adults are consistently labeled more non-compliant and oppositional than their white peers and rejected more for dental care and primary care than their white peers. What we know about Rebecca's plight is UMMC did not treat her and from the video, she looked injured. Even after Mr. Baraka called 911 and Rebecca was readmitted into the ER, she was sent to another center for treatment and then placed in a homeless shelter.

No Continuity in Procedures for Recovering a Missing Autistic Loved One
Maryland has a silver alert law, passed to speed the locating of a missing senior with conditions like Alzheimer's or Dementia. There is no such law for Autistic children and adults because those opposed to it say that constant alerts would reduce the effectiveness of the two they have. Most of us aren't aware that Amber Alerts apply to a very narrow set of circumstances rather than being an alert for all missing children. Our African American community, in frustration with the lack of interest in our missing youth, has tried to leverage social media to search and find our own missing loved ones. In Rebecca's case, shouldn't the hospital have reached out to the police about Rebecca to ask if she fit the description of any missing person? Who ordered the discharge of a bleeding, vulnerable, near-naked patient to an outdoor uncovered bus stop in record low temperatures? What if Mr. Baraka had not been there filming? I have a nonverbal autistic teen son. The thought chills me to the bone. If Rebecca was in an inpatient program how was she lost? Could a simple medical alert necklace have been used to ensure her safety and identification when she needed help?

Patient Dumping
Patient dumping is against the law. Period. It is clear that Rebecca is not the first or only victim. The only way we can make certain this doesn't happen to anyone else's autistic loved one is to decide what each of us can do to make it clear we won't tolerate this happening to Rebecca or anyone else again. It is up to us. No one is going to do this for us.

Right now, what I see is autistic organizations so engrossed in public policy protests and actions to preserve Medicaid, the Affordable Care Act, and the ADA, (all of which are necessary but not their only obligations) that their primary responsibility as advocacy organizations, to protect autistic people and fight for them, has been ignored since the election. Moreso when the victims of gross maltreatment are disabled people of color. No matter what the crises, labor should be divided so that the primary mandate of autistic, mental health, and disability rights advocacy organizations, advocacy, is fulfilled.

Email your State Departments of Health, your Governors, your state legislators. Tell them Rebecca's story. Tell them to act so this doesn't happen. This could be your son or daughter. Do something, because, at this moment in time, no autism organization seems to give a damn.

Mrs. Kerima Çevik

Resources:

EMTALA Anti-Patient Dumping statue
https://www.healthlawyers.org/hlresources/Health%20Law%20Wiki/Emergency%20Medical%20and%20Labor%20Treatment%20Act%20(EMTALA).aspx

Trauma-Informed Care
https://health.baltimorecity.gov/trauma-informed-care
http://www.traumainformedcareproject.org/

The Story of Rebecca Hall (WARNING FOR DISTURBING IMAGES AND VIDEO THAT MAY BE INCLUDED IN NEWS STORIES)
http://baltimore.cbslocal.com/2018/01/10/woman-left-outside-hospital/http://www.baltimoresun.com/health/bs-hs-patient-dumping-press-conference-20180118-story.html

Why I Think That Maybe Stafford County Virginia Should Keep Its Confederate Flag

Childhood photo of Neli Latson, a young autistic African American male in crew cut 'fro, white tshirt and red, white, and blue plaid shirt, smiling at the camera, cradled in his mother

This is what I know about Stafford County, Virginia.

When certain members of the community wanted the Confederate flag removed from flying high above the county in public administration and public service areas, the county solution was to move the pole so the flag was still large and visible from I-95 but could not be removed because it was now on private property where it remains to this day.

So the first thing I understood from this is that Stafford County Virginia might be a place where the rule of law can be used to circumvent the law and keep symbols that oppress and offend its marginalized citizens regardless of the will or wish of its communities. Stafford County Virginia might be a dangerous place for marginalized people.

Stafford County is the the place where Reginald Neli Latson, #AutisticWhileBlack, student and beloved member of his high school wrestling team, sat in front of a library that was unexpectedly closed, not knowing that his life would change forever because a white person didn’t like an African American teen just sitting in front of a public space. So that white person(or persons?), nebulous personae who had shifted to become teens, children, a concerned passerby, a crosswalk guard, but whose identity has been protected to this day, made a 911 phone call reporting an armed Black male in front of the library who “looked suspicious.” Neli was unarmed.

Stafford County is the place where an off-duty school resource officer wanted to arrest Neli for something, and when all his questions had been answered and Neli was walking away he said in that way that power addresses the marginalized, “what’s your name, boy?” knowing that in Stafford County it is against the law not to give your name when a law officer asks for it.

Stafford County is the place where the prosecutor dismissed and disregarded Neli’s disability and only saw a case to add to his conviction record. Stafford County is the place where Neli spent years in unjust incarceration and solitary confinement. Stafford County is the place whose hatred stole from a disabled black youth with a promising future his freedom, his civil rights, and his mental health. Stafford County is one of the places in Virginia where a disproportionate number of incarcerated men are intellectually disabled and Black.

Stafford County is where Neli's mother waged a one woman war for his freedom that was so passionate and so desperate that the media finally took notice. Stafford County is where activists like Leroy Moore tried to help free Neli. Stafford County is where his mother and I cried so long during a phone call that my husband came in to ensure everything was alright. Stafford County is where Neli's mother and sister lost everything, and put everything, into trying to get him out of this unjust incarceration.

Oh, I was just as happy as everyone else when Bree Newsome took that flag down from the Statehouse grounds in South Carolina. But that single act, while it has brought all the Confederate flags flying inappropriately in public spaces as well as displays of other symbols of the failed Confederacy everywhere  including  in our National Cathedral to prominence, it doesn't  in and of itself resolve the problem of racism. The fact that it flew there at all is a greater statement to the structural nature of the bigotry we are facing than the attempts to remove these objects from public spaces are. 

I know Stafford County as the county that avoided confronting activists like Bree Newsome by relocating their official Confederate flag on private property and continuing to fly it proudly.

Now we have this new argument that it should not be flown in view of I-95. Local residents, who drove by it for years without questioning but who are afraid Stafford County might become the site of another Charlottesville are now pushing for its removal. But it is not enough to ask that the right thing is done or do the right thing oneself for the wrong reasons. If the flag and all the ugliness it stood for is still firmly planted in the hearts of the people of Stafford County, it should remain flying as a warning to everyone that justice does not abide in that place.

To the rest of African American families across the nation. Perhaps it is time to let those who want to keep the outward manifestations of their own hatred, those who need to embrace the losing side of history reveal themselves. We need to know what is in the hearts and minds of our neighbors. Let them come out of the shadows for all to see. We need to know the scope of what we are facing.

I fear we are returning to a time where we will all need a digital version of the Green Book, and a Confederate flag dotting the map of these unsafe hate filled spaces will let us know that those who govern these spaces espouse white supremacy. We need to use our spending power elsewhere.

I have no wish to visit or even pass through Stafford County Virginia, though I am certain that good people reside there. Many of them came to court and petitioned the judge in Neli Latson's trial for clemency. But I cannot forget the destruction of his life and the heart breaking saga of his tremendous suffering. I cannot forget the retaliatory convenience of the arrest of his mother when her fight to free her son drew too much negative media attention on Stafford County. I cannot forget being forced to watch helplessly as her life fell apart for the sin of trying to save her son from a grave miscarriage of justice.

What I know of Stafford County Virginia will always make it a place marked by the white blight of racial and ableist injustice.

Let them keep their flag public. May those who love the Confederacy drape themselves in it and parade around. We need to know who all of them are. Out of the shadows all of you and all your enablers too. This ugliness and ignorance cannot end otherwise.

I have no wish to go to Stafford County Virginia. Not just because of the ghastly Confederate flag flying over I-95.

Moreso because my son, Autistic and Brown, like Neli Latson, Autistic and Black, has also always loved public libraries. 

I can't risk that he might be next autistic male of color to look suspicious while there.


References:
Stafford County, Virginia's Massive Confederate Flag post-Charlottesville Backlash:
http://www.wusa9.com/news/local/virginia/va-residents-want-confederate-flag-next-to-i-95-taken-down/471789176

Who is Bree Newsome?

https://www.washingtonpost.com/news/arts-and-entertainment/wp/2015/06/28/who-is-bree-newsome-why-the-woman-who-took-down-the-confederate-flag-became-an-activist/?utm_term=.689d63b73b37

About Neli Latson:

Latest News:

https://www.courthousenews.com/judge-oks-autistic-inmates-claims-abuse/

Leroy Moore's article:

http://sfbayview.com/2012/01/update-on-neli-latson-and-his-mom-im-home-and-soon-my-son-will-be-free/

By the Washington Post's Ruth Marcus:

https://www.washingtonpost.com/opinions/ruth-marcus-in-virginia-a-cruel-and-unusual-punishment-for-autism/2014/11/14/9d7f6108-6c3b-11e4-b053-65cea7903f2e_story.html?utm_term=.76c965c253f7

#FreeNeli On Storify

https://storify.com/kerima_cevik/freeneli-1

InterSected on Neli Latson:

http://intersecteddisability.blogspot.com/2014/11/making-neli-latson-matter-invisible.html

Who is Victor Hugo Green and what is the Green Book?

http://www.pbs.org/independentlens/blog/green-book-helped-keep-african-americans-safe-on-the-road/

Birthday Letter: Parenting Autism In The Age of Trump

I wrote this for my son on his birthday last December. It was painful and personal, and I withheld it for this many months without publishing it because it hurt so much to write it.

My son, surveys his backyard kingdom, holding
his iPad AAC device and wearing a sky blue t-shirt
that reads "Noncompliance is a social skill" available
@RealSocialskills photo © Kerima Cevik

 I was in doubt of many things after some post-election ugliness had visited our town, a sign of worse things to come. I remain concerned for his future and ours.

Happy Birthday Son,

In the 14 years since your birth, I have been forced to witness and experience some pretty sad and disturbing things. We are living in some very polarized, hate filled times. How will I be able to talk about this transition to your teens you are making that changes everything? But I must. Not because it will help you manage the legacy of trauma that is a part of from our racial heritage, but because talking about this is the only path to exorcising it from our futures.

You are 14 now, and I am not simply afraid. I am terrified.

Like your uncles and forefathers, you are big. It isn't just a matter of weight. You are a massive, tall, handsome 14-year-old. Not particularly large or small for our people. But your soft mustache and curly hair are making you look older. Then there is the look of awareness in your eyes. That is the thing that petrifies me. It is the look of understanding that might lead a policeman to misunderstand when you can't respond, to reach for a gun should you reach for your speech device, to shoot should you stand there trying to process why this police officer is shouting and conclude there must be danger and try to run away. No amount of police training or training of you on how to be a compliant brown body will change the statistics. The very high risk is that you, nonwhite and disabled, might meet catastrophe one day.

Those people who are supposed to provide therapies, supports, and services for you always ask me "How do you see your son in 10 years?" What the hell does that mean? I don't think in ten-year plans. I think in the only way we can think. I think in the universe of the breath. I inhale, wait, exhale that we are alive, in this moment, that we have survived harm another day in this now blatantly hyper violent world.

How I see you doesn't matter. How you see yourself matters. That stupid rhetorical query reeks of the presumption of your incompetence. The stench of the recalcitrant automatic mumbling of words that translate as "his cognition will remain static" and,"technology will not change the quality of your son's life." When in fact the largest improvements in the quality of your life did not come from the billions of dollars in autism research but in an idea that everyone thought was inane. The idea that became the iPad.

When I say they don't presume your competence I don't mean I want them to presume you are an autistic savant. It does not mean I expect you to wake up tomorrow with the ability to speak fluently and the ability to do 10-dimensional calculations in your head. The baseline gap between how the people who are supposed to be helping you view you and how you see yourself can be resolved by their simple adherence to the law. They need to accommodate you and stop asking me to tell them what you want when they actually don't care what you want or what I think about what you want.

One of my favorite photos of my son, age 5, in his wheels,
waiting for his ride to school. Image of a Latino presenting
male in a blue hooded coat, curly dark brown hair can be seen
just under the coat's hood. 

You are a teenager now. Remember that son.They must ask you to indicate a response to that aggravating query or any other question they have for you. This requires presenting the question in a communication structure that you are able to receive clearly, understand or try to grasp how you communicate and respect you enough to wait for and hear your response.  It isn't my life. It is yours. I cannot tell you how to be or where I want you to be in ten years.  Our goal as your parents is that no matter what happens, you survive, are safe, have lifelong community-based shelter, and that technology assists you to such a degree that you can live your autonomous life with minimally invasive supports or services.

They are supposed to be helping you and setting goals with you for you to meet.

They never speak of the elephant in the room, the fact that the world has shifted and we are now the objects of even greater hate than before. How does that fit into their transitioning youth plans? What are their ten-year plans for surviving that hatred, xenophobia,  that ableist racism?

How can you find your own way,  when everyone around you now works to diminish you?

Everyone will stand in your path and repeat what you can't do. You must will a path around that. Somehow, your father and I must survive this time of hate backlash and help you will that path. My son, you can do it. Find your own way and indicate to people what you want. Make your "voice", you will, heard. While we live, we will stand by your right to your agency in your own life. All you have to do is not give up.

Respect yourself no matter what others do or say to you, around you, or about you. Shake the insults off the way you shed water when you shoot upward in the pool or brush rain from your face.  Water is only good doing its job, cleansing or nourishing our bodies, our lands, our communities. Insults are like water. They are only useful doing their job. They don't reveal truths. They alert us that we are in the presence of those who would do us harm and that is their only purpose.  Remember the warning, and put either physical or mental space between those elements and you.


I want to see you here in ten years, vibrant as you are now, thriving. I want to see you happy, unafraid, unhurt.

I am usually not afraid of much at all. Thank goodness, I have lived a wonderful life. I've had several brushes with death, and therefore my soul is prepared. But I fear the rise in hate when it was already bad prior to the installation of the present administration. The weakest most spineless creatures have gained courage and they are out in force, saying the disabled should be euthanized, using black and brown bodies for target practice, shouting Muslims should be in camps. Keeping people from using public toilets as they once did my people.  And this time, I have not been able to abate this rising terror.

Your very name makes you a target. That fact is sadly ironic since you were named for a staunch secularist. You have no idea what this is all about. You are innocent of any understanding of what this means but your name, your great grandfather's name, may cause you to come to harm, and that has frozen me in fear.

And yet we must endure. We must continue to show compassion, mercy, and humanity. Not because the dream has been deferred beyond all recall, or because I believe love can cure all. But because it is our human right to live safely in our own homeland. We are Americans, my son. This is our home as much as any citizen's. We have a right to live here in peace.

Your opinion of yourself can elevate or devastate you.

I hope you know by now that you are loved. We have worked very hard to make that clear your entire life. There is no question that you are a wanted and welcomed member of our family. There was great joy when you and I survived your birth. But what is more important, and what I want you to take forward into the rest of your life is that you are respected here. When society is structured to discriminate against you because of your racial, ethnic, and neurological heritage, remember we are here, in your heart, we are your haven.

Remember I am not or was ever ashamed to be in this black body. I am proud to wear the visible genetic legacy of my ancestors. Each time another person gets away with murder, it is society's shame not ours. That is not the fault of our skin color or any divergence in us. That is the burden of those who facilitate and enable the harm that is escalating against us.  It is important that you never be ashamed of who you are, and have patience and understanding of yourself as you are.

Don't stop communicating however you can.

If you cannot use verbal speech that doesn't matter. What matters is that when a means to communicate is presented to you, you take full advantage of it and use it to make your voice heard. I know it isn't easy. Being oppressed means that attempts will be made to instill the feeling in you that you are less than your peers, that you are lacking, that you don't, or can't. Don't ingest that poisonous rhetoric. How others see you is something you can build with your own will. Your will is prodigious. That is your strength and your genius. That indomitable will that never gives up the goal you set for yourself. Go after communicating son.  Make yourself heard. They can't speak for you if you have a voice that exists whether it comes through your vocal chords or not.

Don't allow anyone or anything to goad you into anger. Inciting anger is a trap that creates an excuse to harm you.

Mu with his second iPad AAC, wearing sunglasses,
trying to decide he really wants to leave the house. Yes, blue is
his favorite color; he's wearing his blue polo and gray
shorts. ©Kerima Cevik

This is a label that is forced on us, and we must not allow others to try and enslave us through this lie. We are not inappropriately angry people. It is not wrong to be angry about injustice, about harm, and about wrongs sanctioned by those who claim to wish to protect society and defend it. Anger in and of itself serves a purpose as long as it doesn't drive your actions. But anger should not be a badge forced upon us. Do not allow it son! You have the patience of Job. Remember to keep applying that patience to your life regardless of what people who may wish you ill try to do to push reactions from you. I know you can do this son! You are a great personality and I want everyone to know the depths of kindness and compassion you display. Remember what I said. What people try to label you is not what matters. Who you are and how you define yourself matters. Anger is meant to be a flash of emotion that passes like a lightning storm. You show us that the false stereotype of the silent, violent, autistic male is just that. Don't allow situations or people to gaslight you into accepting states of mind or states of being that are not in your nature.

Remind me and others that you are not a child.

All parents have to be reminded that their children are growing up and growing older. I will get nostalgic, I may waver. I may have the best of intentions but treating you like you aren't a teenager is wrong. It is your job to remind me. It is going to take more than your burgeoning mustache. You have to be courageous as you are son; and stand up for your right to increasingly have a say in your own life, even if that means standing up to me, your aging mother. That is your task my darling, to advocate for yourself. It is mine to get out of your way and allow you to do that as much as I can before I'm no longer here.

Never neglect yourself.

Care of self, remember Mu. The body you occupy is the only thing you have that is truly and uniquely yours for as long as you need it. It is your spaceship in this cruel, alien land. Take care of yourself and your home environment as much as you can. Take care of your mental health, your hygiene, your dental health. Do whatever you need to do to remind yourself you matter. Rest when you should. Health is something you can't regain once you've lost it. My life was at times very hard, and as you know, my health has suffered from this.

I am still terrified. Every day we step out of our front door. Into our backyard. I am afraid they will harm us. But I am also very proud of you. You are growing up.

I do love you with all my heart, my son. I don't know what the future holds for us. Things are looking very grim. But more than love, I respect you. Live the rest of your life knowing that if only me, your father and your sister respect you, that is more respect than most have all their lives and all the proof you need to respect yourself.

Have the happiest of birthdays Mustafa. May we all survive the next ten years.

Love, always,
Mom


NOTE:
The v-neck shirt is designed by Ruti Regan and available in limited edition lots at https://www.bonfire.com/real-social-skills-t-shirt/
Photographs are posted with permission of the subject