Showing posts with label #Ableism. Show all posts
Showing posts with label #Ableism. Show all posts

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 - https://npg.si.edu/object/npg_NPG.79.220,
Public Domain, https://commons.wikimedia.org/w/index.php?curid=77744170
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.


References:

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:https://www.thesojournertruthproject.com/compare-the-speeches

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. https://youtu.be/RxwLe7HapIA


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

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

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.
credit Marvel.com.
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 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

 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
https://www.npr.org/2017/12/07/568948782/black-mothers-keep-dying-after-giving-birth-shalon-irvings-story-explains-why

Wednesday, March 14, 2018

#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 




Wednesday, December 20, 2017

When Help Harms: Surviving Special Education


The author, surveying the forest and deciding navigation while pondering how to provoke a shift in
attitudes towards disabled students on parent and educator sides that would eliminate learned
helplessness, encourage self-advocacy and self-confidence through autonomy and understanding
of real-world situations. 




Winter Cevik is a small, unusually vocal hen in her mid-thirties. In her spare time, she enjoys laying eggs (usually 500 words or fewer), writing IEPs, and offending neighborhood wildlife.


 Two perspectives plague special education. They’re twin roads paved with good intentions, and fail for the same reason: they reduce a disabled individual’s worth to how they make us feel.

We do this with everything, of course, caring about or disliking others, ourselves, even objects, based on personal utility and emotional payoff. It’s a reflex old as language, but when we’re talking about it governing how we decide the futures of other human beings, it merits a closer look.

For the sake of delineating these two mindsets, I will label my examples as “parent” and “teacher”, but these ideas aren’t mutually exclusive or limited to one side of the table. Both groups can and often do indulge in both sets of ideas, or move between them. Sometimes everything from pop culture to district-level administrators encourages and promotes them.

TEACHER:

"Lacey" is a 10-year-old diagnosed with intellectual disabilities. She’s petite for her age and often behaves like a much younger child, with language and interests far behind her peers. For most of her time in elementary school, her friendly behavior and trusting nature with everyone has made her a hit with school staff. She’s often made the unofficial mascot during trips, performances, and events. Whenever she encounters a new stranger in the school building, she will march over and introduce herself—then offer a big hug. Staff have laughed, cheered, and encouraged her. In inclusion, she often asks her gen ed teachers to hold her hand or cuddle while she does her schoolwork, sometimes taking their hands and putting them around her as she’s speaking to them. On a few occasions, she’s also asked this of friendly peers.

Her parents are concerned. Lacey will be a middle schooler soon, and she needs to learn appropriate boundaries with staff and peers. During an IEP meeting, they request that school staff stop holding Lacey’s hand when walking down the hall with her. Her parents also want to discourage her from approaching every stranger she sees in the school building—they see this becoming a serious issue as she grows older, especially if she’s in the habit of immediately attempting physical contact with strangers.  They’ve also asked that gen ed teachers be firm about making peer contact age appropriate: no “baby” talk, no attempting to pick her up/carry her, no using pet names. This, they say, is stigmatizing, and gives her peers the wrong message.

Results have been mixed. While many teachers understand that Lacey will have to deal with the realities of adulthood eventually, right now, they see a vulnerable, sweet young child who is reaching out for love and approval. What’s the harm in holding her hand while walking to the bus? What’s wrong with giving her a hug now and then? And her peers are being so supportive of her. Why ruin that relationship by pressuring Lacey to live up to unattainable social standards?

The hand holding, hugging, and greetings persist until Lacey graduates from elementary school. During the end of year party, she sits on her favorite teacher’s lap and serenades them with her favorite song from preschool.

Everyone’s a genius. Don’t judge a fish by its ability to climb trees.

If I could ban one quote forever from professional development meetings, it would be that one. Ostensibly, it’s a reminder to evaluate each students’ unique set of strengths and needs, rather than trying to measure potential through inappropriate standards. That part is fine. The problem is how this idea manifests in special education.

In districts with attentive management, good funding, and well-rounded teachers, this becomes meticulous data and research-based interventions, great home-school relationships, and a strong sense of what skills the student will need to thrive in future environments, including upper grades. In districts with poor management and overindulgent staff, this idea morphs into doing away with any sort of standard, lowering the bar to nothing, and refusing to acknowledge any environment but the current one for that student.

This isn’t done out of spite, or even incompetence. Worse. It’s done out of pity.

Some kids just function way below age level and continue to need adult support far beyond their peers. Some students come from heartbreaking situations and have had to grow up too fast, with no opportunity to be themselves. Some are bullied for their disabilities, by peers or staff. It’s hard not to read their stories and break down. How do you establish a loving, trusting relationship with a child who is having—and is likely to have—a very tough life, with few people showing them any love or sympathy? How do you get to a point where this child builds up self-esteem? How do you get this student to pass the class and move up a grade level so they don’t continue to be behind and feel hopeless?

It’s easy to see where the idea blurs from creating a supportive environment to creating one with few demands. Our job is to provide care, socially as well as academically. If we can give students a safe place to be their sweet, naïve selves, why wouldn’t we?  We can build up their confidence and trust in people again, we can repair burnt bridges. We can give them a chance to move up a grade level, get that high school diploma, apply to that trade school, talk for them at their meetings. We just need to do most of the work to get them there, because, bless their hearts, they just can’t do it alone right now. But they have time. Maybe in a year or two. Or three. Or after high school. There’s no rush to make them little adults right now when they can’t even feed themselves properly yet!

Let’s face it, short term it feels great. The student loves you for it. Maybe admin loves you for it because it makes you the all-nurturing, sweet-as-honey teacher-martyr special educators are often stereotyped as being. It diminishes behavior concerns. It’s more work for you than the student, but you go home feeling accomplished. It’s gratifying.

Until it isn’t.

This is how I end up with high school students who can’t tell me anything about their own disabilities. This is how I end up with students who have no idea how to follow schedules, interact appropriately in groups by doing basic things like taking turns with others, or understand what tasks they are capable of doing themselves, without any outside help. This is how they end up knowing nothing about how to achieve post-transition goals. This is how learned helplessness happens with neurodivergent students—they mentally check themselves out of tasks they have learned others must do for them.

Their educational lives had been characterized by extremes: bullying or indulgence, isolation or saccharine attention to gratify the sensibilities of a non-disabled crowd of caretakers. Rarely has it even been a balance of challenge and support, very rarely has it been age-appropriate learning. They’ve been given just the wrong kind of latitude to “be themselves” without any foundation to help them understand who they are, what they need, and what they’re capable of. They know that teachers are there to give answers to tests, give out stickers for good behavior, and snitch if you don’t comply. Their teachers are there to be needed, and they are there to need.

I’ve watched "Lacey’s" story in my own classrooms, while I chastised paraprofessionals, teachers, and peers about infantilizing students. I had strong talks with students about deadlines, missing appointments, and actually using their resources to finish their assignments once they were aware of how to follow a schedule and look up information. I fretted over the fate of students who were too touchy, too friendly, too trusting of others when administrators referred to my self-contained class as the “low babies.”

Pity kills all relationships. It reduces the other person to a thing that makes us feel bad, drives us to relieve our own bad feelings rather than see the potential in others. It goes beyond ableism: it’s a betrayal of the very philosophy of our field, to provide true opportunities for our students to mature, develop, and come into their own.


PARENT:

“Jay” was diagnosed with autism and severe intellectual disabilities when he was 2.  He’s in 4th grade now and making gradual progress. He’s learned some pre-reading strategies, is doing well with brief interactions with peers and frequent sensory breaks in between.  At his annual IEP meeting, his teachers suggest starting him on sight word recognition, early math concepts such as comparing quantities, and adaptive PE an hour a week, as well as few hours of inclusion in grade level activities. They pull out the data to back up his present levels.

Mom is not pleased. She’s heard stories of students making rapid progress in other districts, innovative strategies to get them to speak, socialize, and participate with their peers. Although Jay’s early prognosis was dire, he had made rapid progress when he was given early intervention—he was toilet trained on time with his peers, participated in inclusive preschool just fine with everyone else. Why the low expectations now?

Easy. The school is holding him back. They’re giving him work that stigmatizes him and makes him realize he has a disability. It’s hurting his self-esteem and he’s shutting down, which puts him further behind. He clearly needs school-sponsored tutoring, increased speech therapy, and social skills class to bring him out of his shell. And adaptive PE? Please. Her neighbor’s campus has a pool, and her daughter uses it daily. Aquatics for an hour a day can triple reading and math scores for kids with autism. Yet they hadn’t even suggested that for her son.

It’s time to call up that advocate.

The Parent Perspective goes something like this:

1.      My child/my child’s true potential is hidden underneath the disability. My child must be separated from his/her disability.

2.      We need to remove/neutralize/extract the disability using the right set of tools so that my child can be who he/she is meant to be

3.      Experts are there as vendors of these tools. The ones that don’t do this, or don’t feel the same way, are roadblocks to be removed from my path.

There’s an eagerness in Parent Perspective to uncover a student’s potential and a tendency to presume competence that many teachers share. But the price is often a denial of the student’s current ability, or worse, an entire part of the student’s lived disabled reality, in the name of progress.

 I have encountered adults who were never informed of their disabilities, because their parents had declined to reveal it to them, effectively cutting off avenues for self-advocacy and community by not giving their children a realistic view of what challenges may lay ahead. I’ve seen parents insist on therapies that no one in a district was trained to provide, push for inclusion during subjects that give no real benefit to the student due to the prevailing belief that inclusion will improve social skills; I’ve seen parents of young echolalic students state their children are doing math beyond grade level because the children can recite high numbers, and demand the student be placed in general education.

Many times, schools will cave in and provide some these trappings of education (I like to call this "education theater") to make the parents happy. Sometimes they do it to avoid advocates. It’s almost never done because anyone else at the table feels like it’s in the best interest of the student.

Teachers face a delicate balance between setting high expectations and documenting attainable goals based on what they can prove a student is able to do, right now, today. This is why IEPs have to be written the way they are, why goals follow a specific format. Schools and teachers face pressure to demonstrate “student growth” while facing an uphill battle to match good resources to what they know and can prove a student will need within a few grade levels. We struggle to find ways of meeting students where they are in age-appropriate ways so we can help them get to where they’re going.

This means not giving a student operating on a pre K level, 4th and 5th-grade math problems that are likely to frustrate rather than empower. It means not dropping off an autistic 3rd grader with sensory integration problems in the middle of a chaotic class period with an overwhelmed gen ed teacher in the name of “inclusion”. It means forcing ourselves, and everyone else, to stick to the facts of what we know a disabled student can and can’t do, right now, and what we can do in the near future to address it.

Denial is a death sentence to this process, not just because it makes the IEP meetings harder, but because of what it implies about how educators now must treat a student—as an extension of the parent’s will, a poor facsimile of a child the parent wants us to bring into existence. It sets a deadline for how much longer the student’s disabilities are supposed to impact him before it becomes unacceptable and we are in some way held responsible. It forces us to look at this autonomous human being, who is in the process of growing and changing, in terms of what parents want her to be, even when the dream is nowhere near reality.

This doesn’t even address what the impact Parent Perspective has on the student. Ignoring who the person is beyond what the person is to you, right now has a lasting impact on how we treat the person. Refusal to see not only a person’s disability, but how that disability’s impact on a person may change over time can mean we dwell on the highlights, rather than listen to what the person is communicating about his own body and mind. It downplays areas where a student needs support by suggesting that the only deficiency is in how we go about uncovering the real person who is unaffected and unlimited by their life circumstances, somewhere beneath the exterior. It simultaneously accuses the disabled person of being an impostor and blames others for her continued existence as a fraud, or the thief of some better, able-bodied, non-neurodiverse person’s life.

This doesn’t dismiss the need to set high standards. A person is not just a disability, shouldn’t be limited or defined solely by it, any more than by race, religion, gender, etc. Parents, in general, are invaluable for giving insight into a student’s strengths, needs, and potential future settings. They can raise the bar for special education programs everywhere. But taken to the extreme, Parent Perspective can morph into a disability erasure that poisons realistic, constructive discussion, reduces children into sock-puppets of Parent resentment, and places the student in an ableist cage of the parent’s making.

Thursday, September 7, 2017

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:
Leroy Moore's article:
By the Washington Post's Ruth Marcus: