Thursday, October 29, 2020

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.

Saturday, August 3, 2019

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.

Thursday, July 25, 2019

Sojourner Truth, Booker Wright, and The Question of Who Controls the Narratives of Disabled Black People

Image of Sojourner Truth, an African American woman
in a white bonnet and shawl and dark gown, seated in a
chair beneath the image, the words read "I sell the shadow to
support the substance, Sojourner Truth. circa 1870,
By Randall Studio -,
Public Domain,
I have been thinking about the conflicting, debated, censored, and sparse information about the life of Sojourner Truth.

I read the arguments in the debate about whether an illiterate disabled woman of color can have agency in what is said and written about her lived experience.

That got me to thinking about Booker Wright.

The story of Booker Wright, like the story of Sojourner Truth, has a central question: whose voice actually dictates the lived experience narratives of oppressed minorities when the very language and media used to tell such stories is completely controlled by the systems that oppress them?

Booker Wright was a Black waiter in a "white's only" restaurant in Greenwood, Mississippi. He was, in fact, the most popular waiter there. He was considered a "good Negro." He knew the hidden curriculum of Jim Crow well and his customers saw him as a "happy Negro."

It was 1965, and a documentary filmmaker for NBC was in Greenwood working on the white man's view of the Civil Rights movement. He heard that Booker Wright sang the menu, Mistral Show fashion, and he thought that an interesting oddity, so he decided to film it. When the camera rolled, the journalist got a surprise. After he was done reciting the menu, Booker realized he had a chance to speak about what life was truly like for him in the South and he did.

 That decision cost him his job, his business, his safety, and his life.

Booker Wright was a restaurant owner. His place was considered a safe space for Black families in segregated Mississippi. After his interview aired, his restaurant was destroyed. Booker Wright was pistol-whipped and hospitalized. Eventually, he was murdered.

His interview is considered the pivotal point of that documentary. It made the documentary a success for journalist Frank DeFelitta, but DeFelitta regretted publishing the interview because of the retaliation and harm Wright suffered as a result. DeFelitta claims he asked Wright whether he was certain he was okay with keeping the entire interview in the documentary. DeFelitta had a sense of what that might cost Wright, but he chose to air it anyway.

Yet, this interview was the only time Booker Wright was able to speak his truth in his own voice to the largest audience that might ever hear it. He thought of the better life he wanted for his children and their children and he did what was right knowing it would probably cost him his life.

Sojourner Truth, like Booker Wright, was trapped in the limitations of the times she lived in, despite "breaking barriers" by suing in court to gain her son's freedom, despite speaking at a women's rights convention before women had the right to vote. Everything she did, even as an emancipated woman, was informed by the limits society placed on her by keeping her enslaved, disabled by violence, illiterate, and limiting what any woman could do without a man's consent or protection.

Sojourner Truth's life story was whitewashed of any mention of sexual assault, despite historical evidence that her daughter Diana may have been the product of a rape by John Dumont. In the 136 years since Sojourner Truth's death, the systemic use of her narrative as a symbol stripped of many brutal realities of who she was have left us with yet another gap in American disability rights history. Sojourner Truth continues to exist as niche black civil rights and feminist icon, stripped of the disabilities that made her a complex, three-dimensional historical figure. To do what she did, when she did it makes the complete image of who she was something of critical historical importance. Sojourner Truth took her moment and spoke truth to power. Her example was there when Booker Wright saw his chance and made his decision to risk all and speak out.

Sojourner Truth was a radical activist. But the question of who controlled the narrative of her life experience as an emancipated activist can be answered by how strong her voice was in written versions of her speeches and the autobiographical book written on her behalf. There is a strong record of her active participation in Marius Robinson’s June 21, 1851 transcription of her speech at the Woman's Rights Convention in Akron, Ohio on May 29, 1851, for The Anti-Slavery Bugle. The 'Ain't I A Woman' version done by Frances Gage appearing in the April 23, 1863 issue of the New York Independent, is considered inaccurate. There is no record of Sojourner Truth's agency or participation in rewriting this version of the speech she gave. There does seem to be evidence in notes that she was an active participant in the drafts of her life story.

Truth's ability to gain a platform to speak her truth came at a cost. The resentment of southern white suffragettes and the demands of abolitionists who realized her story could be weaponized by ensuring the language appealed to illusions of what whites expected blacks to sound like. This was done to drive their cause forward.

Despite all this, Sojourner Truth, like Booker Wright, had her moment to speak her truth. No amount of rewriting and whitewashing has erased that event. It sits indelibly in both Black and Disability justice history as a triumph of the spirit. As does Mr. Wright's decision to speak outside the lexicon of his oppressors. In this era of fear and hatred, remembering the courage of all disabled people means the difference between courage and doom.


Nell Irvin Painter, Sojourner Truth: A Life, A Symbol (Norton, 1996), p. 19, and Margaret Washington, "Sojourner Truth's America" (Illinois, 2009), 51–52

Compare the two versions of Sojourner Truth's speech at The Sojourner Truth Project's page:

PBS Interview about Booker Wright Documentary co-produced by his granddaughter and directed by Raymond De Felitta, son of the journalist who produced they original the original documentary.

Monday, March 18, 2019

#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.


Friday, February 1, 2019

Sojourner Truth Was A Disabled Social Justice Activist

Truth is powerful and it prevails.
Sojourner Truth

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

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

Monday, August 27, 2018

#DisabledWhileBlack; Missed Opportunity, #SerenaWilliams, Adaptive Wear, And Intersectionality

Image of a female form clothed entirely in black
 with a Black mask resembling a Black Panther,
she is leaning back against a tree with one arm
 draped over a branch and the other petting a large
 black panther, her fingers seeming to be scratching
the panther's head. The panther's teeth are bared.
The disability rights conversation around the French Open Committee banning of tennis champion Serena Williams compression catsuit took a singular turn on social media that merits further discussion.

For anyone who may have missed this, Ms. Williams needed a compression suit to reduce clot formation. @Nike created one for her in Black. The suit also had an emotional meaning to her as an athlete forced to make a comeback for the 'crime' of nearly dying giving birth to her daughter Olympia.

I witnessed disability activists discussing this from the perspective of accommodation for disability excluding the rest of Ms. Williams' identities when this entire episode is happening because of the combination of her roles in the African American experience,  her position as a role model for women in sports, African American women survivors of pregnancy and childbirth in our country, and career women punished for giving birth.

I was taken aback by a negative comment about the Black Panther movie reference when discussing the entire kerfuffle. For those who don't know, in the @Marvel Universe Shuri becomes the Black Panther, meaning the Black Panther superhero archetype can potentially transcend gender identities. The Black Panther movie also has historic cultural and emotional importance to our community.

So #SerenaWilliams saying she felt powerful in this catsuit has layers of intersectional meaning addressing how an accommodation for a medical condition can empower disabled bodies and how important character representation is to our disabled and our Black communities. She felt like a Black superhero at this moment and that means more because we now have such characters in major films representing us. For those of us who grew up with the first nonsegregated representations in all media expecting more but remaining disappointed for decades, Ms. Williams gave voice the reality that we feel; the realization of  a small dream deferred too long.  Giving voice to this matters to every young African American child and every Black child globally. It cannot be left out of the catsuit conversation or why this prompted an official to single out this particular suit as an example of what is unacceptable.

How Serena feels in the suit after overcoming a traumatic childbirth also matters and should be
Serena Williams in her awesome catsuit. Credit Nike.
included in any conversation as her high-risk birth was directly related to her health challenges. She is in fact, by virtue of her chronic health conditions, a disabled Black athlete. Sadly, no one in our community is stating the obvious, that despite internalized and externally strong ableism, Serena Williams is a disabled champion athlete who is continuing to compete with her nondisabled peers and defeating them. Making her, in fact, a living icon or hero.

Serena Williams' role as an African American woman who disclosed how she nearly died during childbirth and her struggle to return to health and the fitness needed to be a competitive tennis player again must be included in any disability conversation about the issue of accommodation for her tendency to create clots. 

I am an Afro-Latina disabled woman who nearly died in childbirth and in the fifteen years since the birth of my disabled son, I have not completely recovered. The efforts that African American women like Serena Williams and Beyonce have made to share their stories of survival, recovery, and self-nurturing are life-affirming to me and the thousands of others who have survived this trauma, as well as the families of women like Erica Garner, who have not. Her survival and recovery should be part of any conversation about her need for a compression catsuit.

The conversation about Serena's fashionable adaptive clothing is also a conversation about the fetishizing and patriarchal control over women's bodies. With the tremendous push for the acceptance of disabled bodies and our need for stylish adaptive clothing, this opportunity to discuss the topic was lost as well. 

I am asking disability rights activists to try not to compartmentalize and focus on a single disability aspect of an issue without addressing the intersectional aspects that combine to cause a problem. If the intersectional aspects of any event are something that can't be addressed by you that means that the voices of those who can understand the totality of a hot-button topic should be amplified. Comments that resent the Black Panther catsuit homage aspect of this, the disabled pregnancy and birth for African American disabled women aspect of this, in short, every angle of how this episode matters to our intersectional disabled community does not do this catsuit as adaptive clothing debate justice, and actually erases African American disabled women and treats adaptive clothing as something that is somehow segregated from disability and racial discrimination, disabled maternity, disabled career challenges and disabled POC representation.

Wednesday, June 27, 2018

#AutisticWhileBlack: At the Intersection of Ablesim 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.

The hashtag #AutisticWhileBlack was created 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

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

 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