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. |
Showing posts with label #Mental Health Equity. Show all posts
Showing posts with label #Mental Health Equity. Show all posts
Saturday, August 3, 2019
On The Dangers of Faux Solutions to Catastrophic Encounters with Law Enforcement
Friday, February 1, 2019
Sojourner Truth Was A Disabled Social Justice Activist
Truth is powerful and it prevails.
Sojourner Truth
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| Sojourner Truth, albumen silver print, circa 1870 from the National Portrait Gallery, Smithsonian Institution. |
It's Black History Month, and the corporate response to this year's remembrance is to finally lead with Sojourner Truth. They might tell you her name was Isabella Baumfree, although she left her slave name behind when she gained freedom. They might tell you she escaped her bondage with her infant daughter. They might add she successfully went to the U.S. court system and sued to free her son from bondage. They might post all or part of her iconic speech some titled "Ain't I A Woman?"
What few if any will mention, so I mention it every February, is that Sojourner Truth became a famous human rights activist and Black feminist after suffering repeated physical and emotional injury at the hands of her slaveholders.
So when you read about Sojourner Truth, understand that she was a disabled black feminist who went on to become a public speaker despite not knowing how to read or write, learned about and understood the justice system enough to enlist help and use it to fight for her son's freedom outright rather than try spiriting him through the underground railroad. She recruited Black soldiers to fight for the Union Army during the Civil War. She eventually became a property owner through her own efforts. She accomplished all this while living with the effects of surviving physical and emotional abuse and pain that defined the arc of her life.
People question Sojourner Truth's competence to deliver speeches in English and point to the conflicting voices in her memoir. I actually don't. As professor Jewon Woo points out in "Performing Bodies and Performative Texts," Sojourner Truth's illiteracy did not deny her agency in the creation of literature related to her life experiences or speeches. Per Professor Woo, "that the lack of her own authorial voice paradoxically highlights Truth’s control over their writings. I argue that because her story was not being fixed by one scribal voice, Truth could weaken the authority of literate others and present herself as a central force of various observers’ writings collected in the Narrative. " Professor Woo's work aligns with the presumption of competence rarely granted to disabled people.
We know Sojourner Truth went on mass speaking tours with other emancipated slaves, and we know she obviously could not give speeches across America in Dutch, nor could she have recruited English speaking Black soldiers who were emancipated slaves into the army speaking Dutch.
There is this lack of willingness to accept that history is always written as if freedom and any level of competence for African Americans came exclusively from white abolitionists' singular efforts and not a united effort where African Americans were equal partners in their own liberation.
For someone who was disabled and a woman from what was then one of the most marginalized groups to create a successful career as a public speaker and generate a memoir with support from literate abolitionists also defies modern presumptions of incompetence that cast an ableist shadow over the lives of adults with neurodivergent labels like nonverbal autism, where literacy is often denied them because of structural ableism. Probably the greatest barrier to literacy for nonverbal autistic people is a structural ableist attitude that insists making any genuine effort to make neurodivergent nonspeakers literate is a waste of time.
We have evidence that many literate slaves defied unjust laws and threats to their lives and taught others by lamplight in secret. Holes were literally dug in the ground for this exact purpose. The presumption that she would not speak in the dialect written during her speech shows a lack of willingness to understand the successes disabled people have had throughout history in creating and customizing adaptive solutions to barriers by disabled adults as well.
Because of conflicting historical accounts of Sojourner Truth's life, how she spoke English remains a mystery. There is no recording of her speech and sparse and conflicting outlines of her life. We do know that she enlisted the help of literate abolitionist friends like Olive Gilbert, to write her memoir. I am trilingual. I can assure you that if you grow up around more than one language, disabled or not, you can learn to grasp many languages because your brain is prepared to simply code switch when needed. To this day, African Americans code switch from AAVE to English by necessity. Why is it hard for historians to fathom that Sojourner Truth may have done the same?
I also need to point out that the narrative of Sojourner Truth's life intersected race, religion and political ambitions and agendas. This complicates accurate views of her life since Christians used her to stand for evangelical devotion, abolitionists used her to represent the reason their cause was just, and political forces needed her to recruit Blacks for war.
When you read about Sojourner Truth today, remember everything she accomplished after freedom was accomplished as a Disabled Black Woman. She dared to be a feminist when Black women were made to march behind so as not to upset white Southern feminists. She dared to do what no one else had done and yet her disabled identity is ignored or erased.
Right now, in the age of infantilization, ableism, hate crimes against marginalized people and the presumption of incompetence, remembering Sojourner Truth and reclaiming her Black Disabled feminist identity need to happen.
Here's her groundbreaking speech as reported by Marius Robinson, and the later version by Gage. Read it understanding that this was a woman who was disabled and neurodivergent and instill disability pride in your loved ones of color.
The Speech
Marius Robinson, who attended the convention and worked with Truth, printed the speech as he transcribed it on June 21, 1851, issue of the Anti-Slavery Bugle.
One of the most unique and interesting speeches of the convention was made by Sojourner Truth, an emancipated slave. It is impossible to transfer it to paper or convey any adequate idea of the effect it produced upon the audience. Those only can appreciate it who saw her powerful form, her whole-souled, earnest gesture, and listened to her strong and truthful tones. She came forward to the platform and addressing the President said with great simplicity: "May I say a few words?" Receiving an affirmative answer, she proceeded:
I want to say a few words about this matter. I am a woman's rights. [sic] I have as much muscle as any man, and can do as much work as any man. I have plowed and reaped and husked and chopped and mowed, and can any man do more than that? I have heard much about the sexes being equal. I can carry as much as any man, and can eat as much too, if I can get it. I am as strong as any man that is now. As for intellect, all I can say is, if a woman have a pint, and a man a quart – why can't she have her little pint full? You need not be afraid to give us our rights for fear we will take too much, – for we can't take more than our pint'll hold. The poor men seems to be all in confusion, and don't know what to do. Why children, if you have woman's rights, give it to her and you will feel better. You will have your own rights, and they won't be so much trouble. I can't read, but I can hear. I have heard the bible and have learned that Eve caused man to sin. Well, if woman upset the world, do give her a chance to set it right side up again. The Lady has spoken about Jesus, how he never spurned woman from him, and she was right. When Lazarus died, Mary and Martha came to him with faith and love and besought him to raise their brother. And Jesus wept and Lazarus came forth. And how came Jesus into the world? Through God who created him and the woman who bore him. Man, where was your part? But the women are coming up blessed be God and a few of the men are coming up with them. But man is in a tight place, the poor slave is on him, woman is coming on him, he is surely between a hawk and a buzzard.
The Speech reported by Gage
This appears in History of Women's Suffrage
Matilda Joslyn Gage's version appears in 1863 and while there is evidence of Truth's agency in the transcription of Robinson's version of her speech, the same is not true for Gage's version here:
"Wall, chilern, whar dar is so much racket dar must be somethin' out o' kilter. I tink dat 'twixt de n[expletive]s of de Souf and de womin at de Norf, all talkin' 'bout rights, de white men will be in a fix pretty soon. But what's all dis here talkin' 'bout?
"Dat man ober dar say dat womin needs to be helped into carriages, and lifted ober ditches, and to hab de best place everywhar. Nobody eber helps me into carriages, or ober mud-puddles, or gibs me any best place!" And raising herself to her full height, and her voice to a pitch like rolling thunder, she asked. "And a'n't I a woman? Look at me! Look at my arm! (and she bared her right arm to the shoulder, showing her tremendous muscular power). I have ploughed, and planted, and gathered into barns, and no man could head me! And a'n't I a woman? I could work as much and eat as much as a man—when I could get it—and bear de lash as well! And a'n't, I a woman? I have borne thirteen chilern, and seen 'em mos' all sold off to slavery, and when I cried out with my mother's grief, none but Jesus heard me! And a'n't I a woman?
"Den dey talks 'bout dis ting in de head; what dis dey call it?" ("Intellect," whispered some one near.) "Dat's it, honey. What's dat got to do wid womin's rights or n[expletive]'s rights? If my cup won't hold but a pint, and yourn holds a quart, wouldn't ye be mean not to let me have my little half-measure full?" And she pointed her significant finger, and sent a keen glance at the minister who had made the argument. The cheering was long and loud.
"Den dat little man in black dar, he say women can't have as much rights as men, 'cause Christ wan't a woman! Whar did your Christ come from?" Rolling thunder couldn't have stilled that crowd, as did those deep, wonderful tones, as she stood there with outstretched arms and eyes of fire. Raising her voice still louder, she repeated, "Whar did your Christ come from? From God and a woman! Man had nothin' to do wid Him." Oh, what a rebuke that was to that little man.
Turning again to another objector, she took up the defense of Mother Eve. I can not follow her through it all. It was pointed, and witty, and solemn; eliciting at almost every sentence deafening applause; and she ended by asserting: "If de fust woman God ever made was strong enough to turn de world upside down all alone, dese women togedder (and she glanced her eye over the platform) ought to be able to turn it back, and get it right side up again! And now dey is asking to do it, de men better let 'em." Long-continued cheering greeted this. "'Bleeged to ye for hearin' on me, and now ole Sojourner han't got nothin' more to say."
UPDATE: The original post cited Sojourner Truth had ID based on TBI as her primary disability. While this was well documented with Harriet Tubman, Sojourner Truth's memoirs refer to frequent beatings and abuse resulting in a disabled hand and neurodivergence which first manifested in hallucinations when she was enduring a period of sustained physical abuse by slaveowners.
Because the original version of this post was called into question and it was implied that posts like mine might be considered fake news, I am now honor-bound to provide references for historical information to allow the post to remain published without the taint of fraud. I am always open and grateful for fact-checking because I am also the primary carer for a high support needs son and time constraints may cause errors in my blog posts, but it is was quite painful to note that such calls for fact-checking did not occur about the blog posts of any other blogger in our 889 member group prior to this post, and this makes me wonder how much of this demand was prompted by my race or the fact that I am discussing a disabled woman of color.
Please note that because this is a blog post and not an academic or commercial publication, I am simply listing the references without regard to style. KC
References:
Sojourner Truth
Performing Bodies and Performative Texts, Jewon Woo
Resisting the Status Quo: The Narratives of Black Homeschoolers in Metro-Atlanta and Metro-DC, Cheryle Fields-Smith, University of Georgia, Monica Wells Kisura, Trinity Washington University
How the Suffrage Movement Betrayed Black Women, Brent Staples
Let Nobody Turn Us Around: Voices of Resistance, Reform, and Renewal: an African American Anthology, Rowman and Littlefield
Narrative Of Sojourner Truth, Dictated by Sojourner Truth (ca.1797-1883); edited by Olive Gilbert; Appendix by Theodore D. Weld.
Boston: The Author, 1850.
History of Women's Suffrage, edited by Elizabeth Cady Stanton, Susan B. Anthony, and Matilda Joslyn Gage
Sojourner Truth: a life, a symbol, Nell Irvin Painter
Sojourner Truth, Bold Prophet: Why Did She Never Learn to Read? Carleton Mabee
The waves of feminism, and why people keep fighting over them, explained
Saturday, January 20, 2018
#AutisticWhileBlack: The Terrifying Case of Rebecca Hall
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| 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 |
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.
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
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