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 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
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 




Thursday, March 1, 2018

Brutal Reality Checks - Surviving Special Education

The author taking a needed break from
pedagogy.Image of a petite brown young woman
 in  a Medieval gown, flowers in her hair
and beloved puppy in her lap. Credit
J. Richards/K.Cevik
You are a first-year upper elementary teacher in a self-contained class. In front of you are 12 IEPs. Each was written by a different teacher. Most of the goals are far above the current academic levels of your students and were clearly copied and pasted from grade level state standards. None of them follow the same criteria for measurement, which means you will need to measure each goal a different way. Each of your students has a goal for the four core subjects you teach: math, English, science, and social studies. So in total, you are responsible for 12x4 = 48 separate IEP goals, not counting objectives to achieve each goal. There is very little overlap between your students’ goals, making grouping difficult.
Given a good day with no illnesses, unexpected test prep sessions, early releases, random meetings, assemblies, “writing days”, “reading days”, fire drills, schedule changes, or behavioral interruptions, you have 2 paraprofessionals and a total of about 1.5 hours a day to work on goals.
Your principal pops in to tell you-you'll be getting a new student from out of state. No, they don’t have her paperwork yet. She’ll be here tomorrow. You will need to set up individual academic assessments for her, one on one, using one of your paraprofessionals, so plan to be down staff starting tomorrow.
Your students are back from lunch. You have about 20 minutes of instructional time.
Go.
I remember reading and rereading IEPs for students in confusion my first year. A student who was barely functioning on a kindergarten level with 4th and 5th grade level math goals, or science and social studies goals so specific I would need to craft entire lessons around them so that I was able to get some sort of data before progress report time. Parents seemed not to notice. Admin and my otherwise amazing mentor never commented. It was plaguing me, and from what I could tell, only me.
You see, it flew in the face of everything I’d been taught in my master’s program. It even seemed to defy professional development, all those ones that harangued us about writing measurable goals that were tailored to each student. How can you justify a 5th-grade reading goal for a child who could barely read sight words? How are you not setting yourself—and the child—up for perpetual failure?
One of my colleagues—an older teacher who had been with the district for years—clued me in.
“It’s ok if you don’t achieve the goals in a year,” she told me. “Just make sure you’re writing them how they [admin] want and you’re using the standards they’ll be tested on. Some kids may never achieve that goal, but as long as you can show you’re working towards it, you’re fine.”
It didn’t compute. For the rest of my time there, I ignored her reassurances and battled the paperwork. I wrote my own goals as much as our automated, cookie-cutter IEP writing program would allow. I changed criteria so that they were consistent with how I could measure them. Then I arranged my schedule so that I could implement every IEP possible, however possible, in the limited time I had to do anything that resembled actual teaching.
It didn’t go well. It went better than it would have if I had shrugged and chucked the goals in the trash. But I simply couldn’t, as brand new, inexperienced teacher with no point reference on how to teach 48 goals in one hour of one day, implement every IEP goal, every day of every week.
This didn’t even account for outside variables. Sometimes my students would fall asleep in class because they hadn’t slept the night before. Some would have tantrums and hurl death threats, forcing us to evacuate the room, which interrupted instruction. Sometimes they were absent. Sometimes they were sick but had been given fever reducers that worked for part of the morning and kept them in school—physically there, but mentally and emotionally drained.
It’s been years since I first read those IEPs. I’ve grown out of my outrage and I can see my colleague’s perspective. And I like it even less.
You’ve been a teacher for a few years now. You work for a chain charter school with mostly at-risk teens. There are scores of students in each course, and a revolving door of teachers, admin, and students. Keeping up to date is an art, not a science. You’re doing okay.
Schoolwide, you’re responsible for the tracking and implementation of nearly 50 IEPs, each with a novel’s worth of accommodations and varying numbers of goals. With that large a number, and with so many students MIA on any given week, you need to make sure your work is streamlined. You’ve perfected an IEP format that fits all the legal requirements for your state. You tweak it for students as needed, but it has to be fairly standard for the sake of order and sanity. Your goals are easy to justify, track, and measure, and even subject-based ones apply to a variety of courses whenever possible. Sure, you end up writing a lot of similar goals, but not blindly. Most of your students need similar things, and you make sure to document your rationale so there are no complaints.
But things are precarious. Admin isn’t pleased with passing and graduation rates. Emails start to feature graphs comparing percentages across departments, encouraging “friendly competition”. You hear a lot of “encouraging” statements about how the admin is confident the low numbers will change. So far, you’ve sat through 3 different lectures/department meetings on how to write IEP goals.
It’s simple. Admin wants the numbers to move, and have concluded the best way to do that is to witness change, first hand, in the way we log our daily work. It’s no longer enough to write the goals, to take data. Any administrator who spot checks our IEPs needs to be sold on how much of our time and energy it took to write every, single goal. She needs to be convinced that we actually, truly care about getting every student to pass every class.  
Which boils down to more paperwork.
Suggestions range from the silly to the illegal. One admin suggests writing goals for electives for failing students. The number of students being moved to SPED resource classes jumps. Admin waves away objections that there is no such thing as a resource room for art or music. If there’s no course available, case managers are to adapt the class themselves and “meet with the students to get it done”. No comment is made about chronically absent students. The expectation is that SPED staff will begin making up for the shortcomings of all other staff—that in fact, we are obligated to do so.
One admin encourages SPED teachers to provide fully included students with extra special education teacher support outside the general ed classroom in small groups—a violation of their least restrictive environment. One tells teachers to fill up every category in the “present levels” section of the IEP form—including categories in which the student has no disability or need. “So it’s clear that you know the student well, and you’re not just reading from a file”, she says. Yet another provides sample goals that were clearly taken from elementary settings and can’t be implemented in high school.
For the most part, you know enough to ignore these ravings and do the right thing. Federal law trumps school policy, no matter how bitter it may make higher-ups. But it doesn’t stop the sinking feeling you get when you realize no one at these meetings can claim the moral high ground, not even you. The lip service paid to differentiation and individualization is a poor consolation in overcrowded classrooms, poorly funded schools, and horrendously run programs. Nobody here is able to meet the lofty ideals of creating personalized learning for kids with disabilities. You certainly aren’t.
You keep writing IEPs to conform with the laws as best you can—anywhere from 30 to 50 of them.  Sometimes you mess up. When you can, you adjust for specific students—but you know one person cannot write, track, and implement 50 completely individual, completely separate, utterly unique IEP goals. Your workload isn’t going to go down. If anything, as more and more students come in, it’s likely to go up. So you need to watch your back and crank out your work as efficiently as possible without getting sued. That has to take priority if you want to keep being able to write more goals.
Every once in a while, you’ll write a great goal and get through to a student. Something will click. She’ll learn. And for that brief moment, you’ll feel like you wrote the right thing. You’ll feel like a special education teacher. 
Until the next time that happens, all you can do is keep writing. 

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.

Saturday, January 20, 2018

#AutisticWhileBlack: The Terrifying Case of Rebecca X

Screenshot of a photo of Rebecca X, presented
by her twin during a press conference. Image of
a beautiful Austistic African American young
Woman with center-parted long black hair and
a matching black top. © Chandler Family
It was 25 degrees outside that Tuesday, January 9th, 2018. Psychotherapist Imamu Baraka was leaving his office across the street when he saw staff from University of Maryland Medical Center Midtown in the process of dumping a woman at a bus stop in only a hospital gown and socks. Furious, he began recording the event on his cell phone, called 911, made certain the woman was re-admitted to the ER and concerned no one would believe him, uploaded the video. The frightening footage, evidence of a heinous practice called "patient dumping" went viral.

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

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

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

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

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

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

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

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

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

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

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

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

Mrs. Kerima Çevik

Resources:

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

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

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

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: