#AutisticWhileBlack: The Terrifying Case of Rebecca Hall

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mrs. Kerima Çevik

Resources:

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

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

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

The Silence of the Voice of Justice

“Throughout history, it has been the inaction of those who could have acted; the indifference of those who should have known better; the silence of the voice of justice when it mattered most; that has made it possible for evil to triumph.”  

Haile Selassie

January 25th is the anniversary of the death of a 7 year old girl named Isabella Herrera. Isabella died on a Hillsborough County school bus. There is raw bus footage that shows what happened in graphic detail. Isabella is one of a series of students who have died while in the care of the Hillsborough County Public School system. 

Image of young Isabella Herrera in a black
and red formal dress in her wheelchair
credit The Tampa Tribune

Each of these children deserves to be remembered. They deserve to matter. I included their photographs so everyone reading this can understand that these young lives did not deserve to end so quickly and so horribly. All their deaths happened while they were in the care of the public school system. And all their deaths could have been prevented.

 Isabella Herrera age 7,  was a girl who wished to ride the bus like every other student. She wanted that independence. Quoting WTSP 10News Tampa:

"Isabella's mother says she suffered from a neuromuscular disorder that impacted her walking and head control. Otherwise, Lisa says, she was a normal kid who wanted to ride the school bus.
"She felt good about it; she felt independent. She felt great. I trusted them to bring her home safe every day," says Lisa."

" January 25, Isabella boarded the school bus at Sessums Elementary at 2:07 p.m. Her parents say the school bus driver and aid failed to slightly tilt Isabella's wheel chair so her head would be stabilized, as her Individual Education Plan or IEP requires.
Lisa says during the three months Isabella rode the school bus, she had to remind bus drivers and aids about her daughter's needs.
"They are supposed to be trained for each child's needs, each child on the bus- know their disability, know what to do," Lisa says.
The school bus video shows Isabella's head bobbing forward and backwards about a dozen times over a span of 17 minutes. At 2:24 p.m., the school bus aid calls out "Isabella- Isabella.""

Isabella had gone into respiratory arrest.  Despite Mrs. Herrera's efforts and calling 911, Isabella died.

Keith Coty was ill and taken from his first
grade class at Seminole Heights Elementary a year ago
 and later died. credit ANDY JONES/STAFF The
Tampa Tribune

This is the late Keith Coty. Just over a year ago, Keith had a medical emergency in school.  No CPR was performed. Again school officials delayed in calling 911.  Per The Tampa tribune:

"Here’s what attorneys say happened on Jan. 16, 2014: the Coty boy complained of a severe headache to his teacher. He was sent to the back of the classroom to lay down and started vomiting. The school nurse was called to the room and a voice mail was left for the boy’s mother to come pick him up."

"By the time Teets arrived, the boy’s lips were blue and he was unresponsive. The 911 call was placed by an employee in the front office, 34 minutes after Keith first complained about his headache. An emergency medical crew arrived and administered CPR, raising a pulse."

"The boy was brought to the emergency room at Saint Joseph’s Hospital, where doctors learned he had suffered a brain hemorrhage. They performed emergency surgery, but the boy had been without oxygen for too long. He died the next day after being taken off life support."

This is the late Jennifer Caballero, a vibrant, 11 year old student. She went missing during her school day and was later found dead.  Per

Jennifer Caballero, was found dead in a retention
pond. She was 11.  credit Tampa Bay Times

the Tampa Bay Times: " Jennifer Caballero hid under the bleachers, away from her classmates and six teacher's aides, away from the other 140 or so students also in the gym."

"A teacher saw Jennifer — an 11-year-old girl with Down syndrome — and took her back to rejoin her class of about 20."

"But sometime within the next half hour on Monday afternoon, Jennifer walked out of the Rodgers Middle School gym and onto a grassy field."

"Six hours later, deputies found her dead in a retention pond on school grounds."

"On Tuesday, a key question remained: How did she escape the notice of six teacher's aides — especially when someone knew she had already tried to hide once?"

What was Jennifer hiding from? No one asks this question. The presumption, as my colleague Kassiane Sibley recently pointed out, that neurodivergent people of all ages are  human dowsing rods magically attracted to water unfortunately eliminates any investigation of why she felt unsafe to the degree that she hid under the bleachers and did not wish to participate in gym class. So the presumption that Jennifer's behavior was not her own attempt to seek safety from something or someone, and simply happened because she was disabled negates any chance we might learn what upsetting triggers were in her school setting. 

This is the late Kadeem Jesse Shillingford. Jesse was a sophomore at a Hillsborough County public charter school for

image of  the late Jesse Shillingford smiling in a school photo
he drowned at a school sponsored event credit myfox Tampa Bay

students with disabilities. He drowned at a back to school pool party in view of lifeguards, teachers, parent volunteers, and students, about 140 people in all. Per the Tampa Bay Times: 

 "City recreation officials once took at face value the number of people that organizerss said would attend pool parties at the Family Recreation Center. But now, said City Manager Gerald Seeber, the city is careful to follow-up, making sure of the head count, so it can bring in extra lifeguards if necessary."

"That's the main policy change imposed in the aftermath of the September 2012 drowning of Kadeem Jesse Shillingford in the city pool. It's an effort "to do our best to ensure that a tragedy like that never happens again,'' Seeber said."

"The 15-year-old mildly autistic student at Pepin Academy lay on the bottom of the pool for five minutes before anyone noticed him during the night-time back-to-school party. Security cameras showed the youngster, who could not swim, going down the slide in the deep end and struggling in the water before sinking. Another child finally spotted him. He spent four days on life support before dying."
     
 The Hillsborough County School Board doesn't count Jesse's death as part of the series of student deaths within their jurisdiction, because the school involved was a charter school and the incident occurred at an after school hours event. So Jesse's death "doesn't count?" A Charter school is a public school and this was a school sponsored event. That means the school is within the jurisdiction and part of the county school system. 

In both the deaths of Isabella Herrera and Keith Coty, school staff notified parents instead of  immediately calling 911. The parents arrived, saw their children and only then was 911 called. So my question is, why do Hillsborough county public school staff not call 911 at the immediate onset of a medical emergency?

The most disturbing thing about these deaths is not just that they keep happening. It is headlines like this: 

"Fired superintendent Elia honored by Hillsborough commissioners"

Just click on the headline to read the story. So in the wake of all these deaths the superintendent is fired by the school board, then honored by the county commissioners. 

I don't understand this county. 

Keith Coty's parents' attorney,  Steven Maher, who happens to have also represented the Herrera family, is suing the county school system. The plaintiffs claim the district is discriminating against all 200,000-plus Hillsborough County students. 

I don't understand the silence of disability rights organizations about these deaths. I don't know why organizations whose mission is to advocate for students in general and students with disabilities in particular, were not up in arms about the policies and practices that resulted in these deaths. No amount of financial settlement can erase the loss of a child. No firing can eliminate the pattern of harm apparent here, particularly when the person fired is awarded by the county just after being fired. Most importantly, none of these young people had to die. Someone should care, not because there might be financial benefit but because these deaths are wrong and the lack of accountability for them is unjust.  

Something is very wrong in the Hillsborough County Public School system. 

What does the toll in innocent lives have to be to break the silence of the voice of justice?


---------------------------------
In Memory of Isabella Herrera, Keith Coty, Jennifer Caballero, and Kadeem Jesse Shillingford. 

On Ruth Marcus' Latest Op Ed On the Neli Latson Case

"That’s not to say Latson should be free. He is, by the accounts of those who know him best, a sweet young man who nonetheless can become aggressive when agitated. Winchester, Va., jail superintendent James Whitley, who took the extraordinary step of testifying on Latson’s behalf at two sentencing hearings, described him as “like a child wanting to please us.”
Latson should be in a secure residential treatment facility, and Virginia’s mental health officials support this outcome even as its corrections system incarcerates him ."   -Ruth Marcus,  Reginald Latson’s case points to a major problem in U.S. prisons, Washington Post Opinions 

Ms. Marcus has continued to write excellent pieces on the Neli Latson case, and should be applauded for bringing his unjust incarceration and solitary confinement to the public. While I understand her latest post, her attempt to explain the way the Latson case exemplifies a greater problem, and I agree that problem exists and needs to be dealt with, I am extremely concerned with something else.

Ms. Marcus writes that Neli Latson, who has already served time for assaulting a police officer of which the last year was served in solitary confinement should not be free. She says he should be in a secure residential treatment facility. Let us call things what they are.  A secure residential treatment facility is the politically correct way of saying a mental institution. 

She describes Mr. Latson as a "sweet young man who nonetheless can become aggressive when agitated". Stop and make a mental list of everyone you know who can become aggressive when agitated.  Should they all be in a "secure residential treatment facility" aka mental institution, for the rest of their lives? If a person, in an act of road rage, throws a plastic cup with soda at a driver who cuts them off,  and that person drives their car off the road and breaks their ankle, should the person with road rage be placed in a mental institution for the rest of their lives? If the person who goaded Mr. Latson into aggression had not been a police officer, and Mr. Latson had not been a Black male with a hoodie, would this case have even gone to trial?  Ms. Marcus agrees that Mr. Latson should not have been in prison. She is quick to remind us of Mr. Latson's IQ in each of her articles on this case. 

She quotes The Bazelon Center's Alison Barkoff, who says: 

“Neli is important because he exemplifies one of the systemic problems that the settlement agreement addresses,” said Alison Barkoff, a former Justice Department lawyer now with the Bazelon Center for Mental Health Law.“When services are not readily available in the community, behavioral health crises are often treated as a crime,” Barkoff said. “It is counterproductive, costly and inhumane to punish people for their disabilities instead of getting them help.”

So let me quote that again. "When services are not readily available in the community, behavioral health crises are often treated as a crime." Barkoff said. "It is counter -productive, costly and inhumane to punish people for their disabilities instead of getting them help." 

I keep emphasizing the need to place Neli Latson based on the Olmstead decision. Everyone ignores that and blames his behavioral crisis on his autism, then supports punishing him for one behavioral crisis based upon an abnormally high stressor without considering what this Olmstead decision demands. So lets discuss the Olmstead decision. Let me quote from ADA.gov:

"In 2009, the Civil Rights Division launched an aggressive effort to enforce the Supreme Court's decision in Olmstead v. L.C., a ruling that requires states to eliminate unnecessary segregation of persons with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate to their needs."

U.S. v. Rhode Island – 1:14-cv-00175 – (D.R.I. 2014)
On April 8, 2014, the United States entered into the nation’s first statewide settlement agreement vindicating the civil rights of individuals with disabilities who are unnecessarily segregated in sheltered workshops and facility-based day programs.  The settlement agreement with the State of Rhode Island resolves the Civil Rights Division’s January 6, 2014 findings, as part of an ADA Olmstead investigation, that the State’s day activity service system over-relies on segregated settings, including sheltered workshops and facility-based day programs, to the exclusion of integrated alternatives, such as supported employment and integrated day services.

Amanda D., et al. v. Hassan, et al.; United States v. New Hampshire – 1:12-CV-53 (SM)
The Justice Department intervened in Amanda D. v. Wood Hassan, a lawsuit alleging that the state of New Hampshire fails to provide mental health services to people with disabilities in community settings in violation of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973. On December 19, 2013, the Department, along with a coalition of private plaintiff organizations, entered into a comprehensive Settlement Agreement with the State of New Hampshire that will significantly expand and enhance mental health service capacity in integrated community settings over the next six years. 

U.S. v. Puerto Rico – 3:00-cv-01435 – (D.P.R. 1999) 
Several years ago, the Division issued two CRIPA/ADA findings letters concluding that the Commonwealth of Puerto Rico was violating the constitutional and legal rights of several hundred persons with developmental disabilities who had been living in one or more of the Commonwealth's six residential institutions. Shortly thereafter, the Division reached agreement with the Commonwealth that Puerto Rico would develop and implement a series of measures to drastically transform the nature of its service-delivery system for persons with developmental disabilities. In recent years, the Division has been actively monitoring the Commonwealth's compliance with three CRIPA/ADA consent decrees, as well as several other court orders, all executed to protect the rights of persons with disabilities.

It is Virginia's legal obligation to deliver the services Mr. Latson needs. This can be accomplished in two phases, first a transitional phase that undoes the damage to his mental health done by placing him in solitary confinement for a year and incarcerating him in the first place. Second, by completing a transition to a community based program when Mr. Latson has shown progress and providing the personnel support and other services needed for Mr. Latson to safely navigate his community.  Fulfilling  Olmstead obligations requires that Mr. Latson's entire case be reviewed by the DOJ to insure that justice was done to begin with. It is quite clear from Stafford County prosecutor Olsen's own statements that what was done to Mr. Latson was done because for attorney's own personal derogatory views of Mr. Latson.  Again quoting Ms. Marcus' article:

 "This scuffle warrants, at most, internal prison discipline, not additional prosecution by Stafford County Commonwealth’s Attorney Eric Olsen (R), who describes Latson as a cop-hating, racist thug pretending to be “mentally retarded” rather than a young man with a disability in need of treatment."

She goes on to state that Mr. Latson should plead guilty because the prosecutor is biased.  I thought that cases of prosecutorial bias should be investigated by the proper authorities. Plea agreements are the foundation of  injustice towards Black males in this country. Unable to afford good legal assistance, and pressured to do so, many innocent Black males are incarcerated by exactly this scenario. Prosecution is trying to make an example of them, so they are told to plead guilty to something that they are not guilty of and this fills the prisons while perpetuating the stereotype of the aggressive, criminalized Black male. Wow. I'm stunned by this. The road to hell for Mr. Latson is continually paved with the good intentions of people, inevitably white people, who find pleading guilty a simple act without weighing the consequences to a Black disabled man.

Ms. Marcus has written excellent pieces on this case. This one, except for what I have noted, is also an excellent piece. But the issues I disagree with I disagree with vehemently. We are not talking about words on paper or in a classroom. We are talking about a young man's life. Let's get it right this time.

#FreeNeli

Say What You Mean

When you say, "I hate autism" what you mean is "I need a scapegoat for my hatred of my child's behavioral challenges. I am overwhelmed".

When you say "I wish there was a cure for autism" what you mean is "I want to replace this child with one who doesn't force me to confront the fact that society mistreats those who are noticeably different".

When you say "This (meltdowns, maladaptive behavior, inability to use verbal speech, need for global supports) is the true Autism", what you mean is "my experience of autism is the only one that is valid because I am not happy. I therefore resent families who say they are happy".

When you say "Autism destroys marriages", what you mean is "my marriage is falling apart so I am going to blame autism because if I don't I will have to deal with everything that caused our relationship to fail and I don't want to do that".

When you say "Autism ruined my career" what you mean is "I chose to quit pursuing a career and I regret that. It is easier to blame circumstances than to accept that I gave up doing something of my own free will and now regret that decision."

When you say "I can't die. If I die my child's life will be destroyed." what you mean is "My child has not been taught life skills. I do not know what accommodations and supports the law entitles my child to in order to allow autonomous living in the community. I do not understand what future planning means. I have allowed my child to become dependent on my sole care. I have not built a life outside of theirs, so I cannot view life without my child needing me. I do not trust the current options for my child's transition to adulthood, but do not realize I have the power to demand change in what is out there.".

When you say "Autism destroyed our finances" what you mean is "We made rash and sometimes high risk decisions in how our autistic child would receive therapies and treatments, and sank too much money we did not have into the idea that if our child received enough treatment quickly they might mask their autism and we could declare our child cured. But that didn't happen and now it is time to face the fact that we must now deal with the financial reality before us. We are financially overwhelmed and need help".

When you say "You are not like my child" what you mean is "My child's degree of disability makes me certain they will not have an autonomous life because I believe autonomy and independence are the same thing. I cannot imagine my child living in the community because the supports required for that to happen seem impossible to gain".

When you say "My baby is an angel" what you mean is "I need to infantilize my child because I can't deal with the idea that they are getting older and their intellectual differences will make life as adults challenging for them. So I will avoid those realities by never letting them grow up and grow old."

When you say "Vaccines caused my child's autism,"what you mean is "I cannot accept the possibility of my own genetic responsibility in my child's neurology. I am angry and want to direct that anger at medical science because they have failed to learn why my child's neurology is different and they have not found a way to mask that difference. "

When you say "I mourn my child everyday," what you mean is "I have created an imaginary child who I idealize and believe should be my child. When I am confronted with the reality of who my child is, I reject that reality and want my idealized child who would never have existed, and mourn for the fact that I can't replace my real child with my imaginary one. "

When you say "Autism took my child"what you mean is, " I am angry because doctors are not finding ways to improve my child's' ability to function better in society. I can't deal with any guilt that my child is autistic. So I will keep blaming everyone and everything, and by doing so show my neurodivergent children that I do not accept them as they are. It is too hard for me to fight ableism, fight for inclusion, fight for improving the quality of my child's life. So I will keep focused on blaming and demanding a cure, in the hopes that I will wake up one day and be told that my child's difference is not my fault, or that they can take a pill and make it all go away."

Say what you mean. 

Then look at what you are really saying.

Face your own fears and suppositions.  Consider seeking help if you feel overwhelmed and depressed. Family counseling may help clear up a great deal of sadness and frustration and this change will immediately make life for you, your family, and your autistic loved one better.

When you are in a better space ask yourself honestly what you really want for yourself and your neurodivergent loved one. Make a bucket list. Don't use autism as an excuse not to achieve in your own life. Find the accommodation and supports needed for you to do things with your loved one included. You have the power to change your own life and by doing so radically change the quality of your loved one's life for the better.

How your loved one became autistic doesn't matter. How will that loved one achieve the place in society that is their human right is what matters.

 How can you all be happy right now?

It begins with saying what you mean.

On Disparity in Education: Equality is Not Justice

There was a meme making the rounds of all the social networking communities a while ago. The meme was entitled "Equality Doesn't Mean Justice". This is a derivation of a meme by professor Craig Froehle. Let me post it here to save time:

Image is a two frame caricature the first is of a tall man a man middle height and a very short man all standing on boxes of equal size trying to look over a fence at a baseball game. The tall man and shorter man are able to see but the smallest man is not. The caption below the first frame reads "This is equality". In the next frame the shortest man is now able to see the game because he is standing on two boxes, and the shorter man is standing on one. The tall man needs no box and is still able to see the game. The caption under this frame reads "This is justice". 

It is very difficult to explain this distinction to any professional who has no understanding that my son's race, gender, perceived socioeconomic status and his degree of disability combine to leave him vulnerable to the same negative stereotypical  biases that have caused harm to him in the past. What is seen as equal is presumed to be just. My son needs three boxes to reach the justice of a free and appropriate education. He cannot be presumed to be treated fairly because his treatment is equal to another child of equal pathology who has no intersectional factors increasing risk of unjust placement and maltreatment in the classroom.

Appropriate education was meant to achieve equality with average students in public schools. But this approach is rarely just, particularly for students who must overcome misdiagnoses of emotional and behavioral disorders often placed upon them automatically. Their race and gender are used to presume that rather than educational supports they require behavioral management. Exclusively with males who are Black, the attitude with special education professionals is always an entrenched demand about controlling the pupil, and this is based on a systemic type of racism that assumes that if a person is poor, male, and Black, their behavior will become aggressive eventually.  So every action is viewed through the lens of  the racist legacy of a history of violence. The same action by a non-Black student might not be viewed in that light at all. A self fulfilling prophecy for nonspeaking autistic males, who are hypersensitive to fear in others and will react by mirroring the fear they sense in classroom staff and trying to defend themselves against whatever may come at them. Add to that administration by risk management and fear of responsibility for some imagined outcome if some child is not locked away from their peers and you have a recipe for discrimination that is an infinite loop until a student ages out of the school system. A 'good' student will then have learned to comply with rigid routine, the primary rule for living in an institution. They will learn helplessness, not self advocacy. The 'bad' student will have increasing force used against them until some catastrophic event occurs.

Sadly I realize that if my son and most of his peers did not carry these labels, what would be the primary focus of any educational roadmap would be what is just. How does one counter a mentality based on historical fear of large males of color combined with a historical fear of neurodivergent individuals? Professionals are often not even aware of the fear and bigotry driving their decisions and responses. If told "this response is ableist" or "that opinion is actually a racist assumption rather than a professional observation" they will use their credentials to balk and react with hostility. "Parent" will be used as a derogatory word. One's credibility as a parent will come into question.

In the distant past threats were made to us during meetings in an attempt to instill a fear of reprisal to our son or us should we complain or demand justice.

 Yet now my son's future, as well as that of his intersected peers, is in their hands. How can we navigate this booby-trapped environment?

I am trying to base communication on facts and focus on quantifiable observations and assessments. This is the best I can do. I have no control over the bigotries, fears, and disdain of those who might work with my son going forward except to be on the lookout for red flags in those people and how my son reacts in their presence. I have had the honor of getting to know my son well for three years. I trust him. He does not need to speak to let me know someone is mistreating him. I can only return him to being the lead protagonist in his own life and stand by him as he overcomes obstacles himself. But when you know this institutionalized ableist racism exists, and it looms over your child's world decimating the quality of life he might achieve it hurts. Beyond the injustice of it all, it is an exercise in standing by helplessly hoping your child can survive his education. It is frightening.

As we arrive with our son closer to end of our four year battle for his right to be educated, I want justice. I cannot accept less. My son deserves justice. I want him to have his right to an untainted free and appropriate education. I do not know how, under the present system he can achieve this goal. But he deserves to be back in command of his own life story in safety and peace.

Wish us luck. We really need it.

On Murder of Jordan Davis By Michael Dunn

Apparently no one reads what I write.

 Let me explain. Recently, deeply wounded by the verdict in the trial of Michael Dunn for the murder of Jordan Davis, I posted a status on my facebook page.

I said in part: "I get daily demands as an activist. That I be a good ally to other causes. That I contribute my intellectual property, my loyalty, my time, my son's time, my family's time effort and money. Even now. Even now I'm being asked, even pressured to support things. That shows a deep lack of caring and understanding for what just happened."

I presumed, foolishly, that my colleagues might understand that this might not be an appropriate time to demand my intellectual property, my loyalty, my time, etc. It might be a good time to be an ally and go to their respective organizations and ask that they release a statement supporting justice for Jordan Davis and dismay at the human rights record in Florida when it comes to Black children. It might be a good time to mention what each social justice organization has done to fight hate crimes directed at one race. It is not a good time to ask me for even more as an activist while ignoring that there is a pattern of violence going on that perpetrators are not being held accountable for. Activists cannot make demands of me as their ally and fellow activist and do nothing about the clear and present injustice to my people before them. Yet organizations in disability rights advocacy, who want to serve and be increasingly inclusive of minority members, are silent. I will defend my son's right to self determination. But I must now wonder how I can possibly work for organizations that are not reaching out to our social justice organizations and asking how they can show a united front against this deadly trend. Because this trend, when intersected with my son's nonspeaking autism, means an even higher chance that he will become the next Stephon Watts or Jordan Davis. So this issue is something that directly affects the Black members of any disabled population and should therefore be addressed by the disability rights community in general and all autism nonprofits in particular.

What is it about facing the truth that racism is alive and well in our nation today that makes everyone who is not a person of color squirm? How many more murders will go unpunished before we look at our national reflection in the moral mirror and deal with the festering canker of discrimination oozing hatred in every corner of our country? When racist people wish to commit a hate crime these days, they have more sense than to grab Black boys off the street and lynch them. Today's mob lynching is creating any excuse to shoot them, then turning yourself in and getting away with it. Make no mistake, what happened to Jordan Davis and his three young friends was a deliberate hate crime. Swallow that bitter pill. Choke that down, and ask what can be done to turn the tide of hate.

We cannot deflect the issue of violence directed at the male members of one race by making it something else. This is not a matter of gun control. Guns are the instruments of violence alone. It is not the abuse of the Stand Your Ground law. Quite clearly approaching a car and trying to incite a reason to shoot at the teenaged passengers in it is not standing one's ground. Arguing about the volume of music in a public gas station is not standing your ground. So this is not about whether a person has a right to defend their home or personal safety by using deadly force against trespassers. This is about racism. Bigotry against Blacks in general and young Black males in particular. So please, don't begin the standard talking points on gun control and stand your ground statutes. It adds insult to tragedy.

Dear disability rights nonprofits, activists, and everyone else. Have you reached out to your Black constituents? Have you publicly expressed your outrage? Are you silent now? Because if you are, you are sending a message that Black lives are irrelevant.  You are erasing my son's life and my life as well.

Do not then wonder why Black activists are not more involved with your causes.

Intersectionality and Representation: Ingrained and Unconscious Discrimination

Every autism nonprofit organization should have some form of policy statement clearly visible on its web site and accessible to all who need see it, like this example from Richard Male and Associates:

Adopted by the Board of Directors on [ DATE ]

[ NONPROFIT ] does not and shall not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military status, in any of its activities or operations. These activities include, but are not limited to, hiring and firing of staff, selection of volunteers and vendors, and provision of services. We are committed to providing an inclusive and welcoming environment for all members of our staff, clients, volunteers, subcontractors, vendors, and clients.

[ NONPROFIT ] is an equal opportunity employer. We will not discriminate and will take affirmative action measures to ensure against discrimination in employment, recruitment, advertisements for employment, compensation, termination, upgrading, promotions, and other conditions of employment against any employee or job applicant on the bases of race, color, gender, national origin, age, religion, creed, disability, veteran's status, sexual orientation, gender identity or gender expression.


The critical nature of having this type of statement in place, particularly for nonprofits with national and global reach cannot be understated. Any board of directors must fully understand that organizations can have a culture of discrimination, producing ingrained and unconscious organizational discriminatory behavior. Institutionalized bigotry is not understood until discriminatory events are brought before the organizational board in the form of written protests, EEO complaints, or legal action against the nonprofit. At that point, general board reaction tends toward reactive damage control rather than justified remediation and introspective investigation of its own culture and how this culture might negatively impact the productivity and  success in meeting organizational goals, as well as rooting out where issues need to be resolved.

Probably the largest disappointment for me as a multicultural, and multilingual woman of color was the day I realized my belief (that organizations acting for the betterment of the human condition of any marginalized group would not discriminate against intersected members of that group) was wrong.  I was not only wrong, I was ignorant of how widely underrepresented intersected groups were within nonprofits whose mission statements scream advocacy and representation.

There has been prolific segregation in governing board membership, particularly in autism nonprofits. In addition to the unacceptable situation of having no autistic representation on governing boards of major autism nonprofits,  a red flag of segregation is evident in the hundreds of micro-charities founded by people of color and members of other underrepresented groups within the autism community just to try and carve out a voice in their own lives. The costs of this discriminatory trend are painfully clear when African American celebrities whose nonprofits eventually gravitate to a takeover or financial dependency on grant giving nonprofits end up being used as the token public lure for their racial peers. Autism Speaks is a good example of such a nonprofit. Let's look at how they measure up in representation:

Image description: infograph of the governing board distribution of Autism Speaks . 


Recapping:
Total Board Membership = 33
1. Number of Autistic Board Members           = 0
2. Number of White Male Board Members     = 25
3. Number of White Female Board Members  = 7
4. Number of Non white Board Members       = 1 (note in reality this is a cisgender female celebrity)
5. Number of Celebrity Board Members         = 3 (5 if spouses of celebrities are considered)

See where I'm going here?
To the degree that no one in any other organization created to represent people of diverse 
neurologies, races, ethnicities, genders, national origins, ages, religions, creeds, disabilities, sexual orientation, gender identities or gender expressions does so by building leadership that excludes those it claims to advocate for, this distribution is disturbing.


This is part one in a series on Intersectionality and Representation.

Coming of Age in the Shadow of "Rain Man"

I, Michael Scott Monje, Jr., am granting permission in advance for anyone who wishes to reproduce this essay in any format, including but not limited to reproducing the full text on another blog, printing it as a handout for workshops, resharing on Tumblr, or any other method of resharing it. The only restrictions I place on this permission are these: that you reproduce the entire text without edits, including this statement and that my byline be included with my full name. This is an unusual thing for me to do, but this is an unusual essay. Please share it.

The first time I heard the word autism was when my mom told me about the movie Rain Man. She was excited about it. I don't know if she had recently seen it in the theaters or if my parents rented it and saved it until I was in bed or what, all I remember is the fact that she was taken by the way that Dustin Hoffman pronounced "Judge Wapner." She spent days repeating it over and over to herself as she did the housework.

That wasn't the only line that she repeated. She also repeated the bit about going to Kmart to get more underwear. She actually said that whenever we actually needed to go to Kmart. I was only about six, and I did not know that I was autistic when she first told me about this movie that had fascinated her so much and made her so interested in how "those people" could manage to do so many intellectually sophisticated things when they couldn't even "properly express themselves."
I was six years old, but every time I heard "Wapner" or "Gotta go to Kmart" echoing down the hallway and into my room, I cringed. Something in me recoiled from it--not just from the idea of being seen in public with her while she did this, but from the idea that I had to endure the company of someone who would imitate a disabled person for her own amusement. At the time, I had no words for it. I simply knew that my mother's behavior made her Not Trustworthy.

It was a couple of weeks after she first started doing the bits from Rain Man before she finally explained what the movie was about. I don't know if it was my discomfort with her behavior that led to it or not. She did sit me down individually, without my brother or my dad, when she explained it to me. She told me that she found Dustin Hoffman's portrayal to be very emotionally deep even though he did not get to speak his feelings at length. She also told me that the movie was about how a younger brother stepped in to take care of his big brother after their parents died, and that the movie was about how terrible it was for that older brother to be kept in an institution where people regulated what he did and where he was allowed to go.

I was eleven before I finally saw the movie for myself. In between my mother's month of being obsessed with it and my finally seeing it for myself, she was institutionalized twice and diagnosed with bipolar disorder. If you ask her about it, she will tell you that she was in the hospital for three weeks before they came up with the diagnosis, and that she had to suggest it to the doctors herself. I'm not sure about that, but there are a lot of things about my childhood that I am not sure about. All I can go by is what I remember and what my family tells me.

What I do know is that my mother is Not Trustworthy.

During those intervening years, I also learned marginally more about autism than what my mother's understanding of rain man imparted to me. For example, I learned from my friend Aaron that his brother was autistic, but that Rain Man was not at all like the autism that Aaron knew from his relationship with his brother. His brother did need to go to a special school (as Aaron put it), but he was in fifth grade and he was doing well. He would stay in that school until he finished high school, but other than that he was just the quiet guy who joined us for Dr. Mario sometimes.

I used to try to understand what it meant that he was autistic, because I did not have a firm idea about what that meant other than that he did not think the way "the rest of us" do. I spent hours when I was alone in my room trying to imagine what it would be like to experience the world the way he did, even though I did not know how he experienced the world. When I was not doing that, I listened to my parents talk about family issues through the heating vent. I couldn't make out everything they said, but I could tell that they were going back and forth about special education access, how smart one of us was (I could not tell if it was me or my brother at the time), why my mother hated us hearing rock n' roll when we were in the car with my dad, and whether or not I would "fit in" better at a Catholic school where everyone had to wear uniforms.

Now, as an autistic adult who did not receive any information about his diagnosis until his late twenties, I wonder if the parts of their conversation that I could not make out would have been about autism. I don't know. I can't ask.

Not Trustworthy.

During these years, I expressed myself by drawing cartoons. They were hellishly violent, often incorporating imagery about nuclear Armageddon alongside falling anvils and other slapstick routines that I filched from Bugs Bunny. Some of them might have been borderline racist. I don't know, because I don't have the cartoons any more, but I drew them while watching the three hour blocks of classic Loony Tunes that aired in the early morning on TNT back in the late eighties and early nineties. The long blocks that were made up entirely of cartoons from the forties and fifties. So I might have drawn some racist cartoons without realizing it.

I do know that my cartoons bothered my mother. To me, they were just my take on Roadrunner and Daffy Duck and Tom & Jerry. If they were disturbing to the adults around me, then maybe that should have led to them asking themselves what scripts I was following when I decided that "funnier" also meant "more violent."

My fourth grade teacher encouraged me to express myself through these cartoons without judgment. Some of the other kids, my friends mostly, started drawing them too. Most of the rest of the boys in the class used the cartoons as a reason to bully me, though. It took two weeks of me getting beaten up after school before anyone intervened. Later that year, my mother went into an in-patient mental health program for the first time. The kid who beat me up never bothered me again after that, but by the time that happened, I had already armored myself against him by seizing all of the things he called me--Freak, weirdo, queer--for myself.

Except queer. My parents would not tolerate me using that word about myself. They said it was derogatory and that it was dirty. They said that no one would ever apply it to themselves.
Not Trustworthy.

The year I finally watched Rain Man was also the year that I was forced to work with a teacher who thought that fifth graders were "too grown up" to doodle during free time, and that we should either read books or write journals if we got our work done early. So, instead of drawing cartoons, I wrote stories. I wrote out all the hyperbolic slapstick violence that I usually drew with funny motion lines and cute voice bubbles. After a point, I was chastised in front of the class during a reading of my work because it was "sick" and "inappropriate".

My mother insisted on reading my entire journal just a few days or weeks later, I can’t really remember which. When I said no, she shut herself in her bedroom with it and read the entire thing. My screaming and throwing myself against the door only made her more determined. My embarrassment and my consent did not matter. The idea that I might have written something that I did not want to share did not matter. All that mattered was that I was hiding something.

Later that year, she sat me down to watch Rain Man. Neither of us said anything during the movie. At the end of it, I agreed that both actors had done a good job with their parts, but I did not know how to feel about the movie, except to feel even worse about the fact that my mother still found the "Judge Wapner" bit funny. I still didn't know that I was autistic, but I knew that the movie was wrong. I didn't have words for it, though.

A lot of people ask me why my choices about the language used to describe me--both my choice to embrace the word queer and my insistence on identity-first language (autistic) over person-first (person with autism) are what they are. Other people ask me why I think that it's so important to declare that my otherness is what I am.

All of the reasons people give me for not respecting my language revolve around the comfort of the people who are deciding things for me, not my own comfort. It's their othering that they want me to mask, not anything I have done to myself. Their aversion to speaking openly of the fact that I experience this othering is just a way for them to remain in denial about the fact that they contribute to it. I do not owe those people the right to be comfortable if it causes me discomfort to grant it, and most of them will forget about the encounter and their discomfort a little while after it’s over. I won’t. I have to walk around with the scars from each battle over the words that they use to label me.

My words are bandages that then become weapons as I heal, and I will not let anyone else force me to use less effective ones.

Even if I own my own home and work full time, a world where I defer those decisions out to others is an institution, a place where my movements are controlled and monitored by others who think they know better than me, and I am committed to living in a world with no institutions. A world where people like me have supports but where we are not "managed." Where our consent means as much as anyone else's, and where we can not be dismissed for communicating in the ways that are most effective for us.

I wrote Nothing is Right to call attention to the way that a lack of diagnosis and support creates an institutional environment that permeates every aspect of our existence and forces us to retreat from the limited choices forced on us. It's not about autistic people being in their own world or not understanding what's going on around them. It's about Autistics making their own world because they are too keenly aware of what's going on around them. A lot of people have asked me how much of that book is "true". I always tell them the whole thing is true, but not all of it really happened. Then they ask me how much of it really happened.

Too much. Not the whole thing, but too much.



 Copyright © 2013 by Michael Scott Monje, Jr. Reprinted with the permission of the author.

Guest Blogger in Prose and Rhetoric for Social Justice

Bridges and Islands: Crossing into the complexity of intersectional identification

by Zach Richter

In this short synthesis piece, I will briefly review the arguments of Gill (1997) and Takala (2007), culminating in an argument for neither disability essentialism nor a flight from all single-issue identity politics in general, but instead an argument in favor of multi-positionality political categories and a coalitional tactics for activism.

In Carol J. Gill’s (1997) “Four types of integration in disability identity development”, a path is set out for a fabled journey of self-acceptance that many disabled people follow. Furthermore, Gill (1997) argues directly that many psychological and trauma based issues in disabled people can be remedied through moving further down this schematic of self-development. The steps take place as follows: first identification (and desire for inclusion) within larger society and the able-bodied ideal, second identifying with the generalized disability community, third identifying and empathizing with those in the disability community who have had differing experiences than you, fourth identifying publically with the disabled community even in non-disabled spaces. While some may characterize this journey as one toward separatism, it is my argument that Gill’s (1997) analysis is useful because it provides backing for a specific optimism based in embracing those cripped spaces where we can talk about our needs, our realities and our experiences without stigma. As Takala (2007) would probably argue, however, Gill’s framework cannot be allowed to claim universality. Black disabled people, those of differing sexualities and those of different genders might still find a white, straight, masculine disability community to be less than accepting. Without voices of critique, disability rights spaces are bizarrely focused on some aspects of the wider project of liberation but not others. I will offer a solution that embraces some of the more useful aspects of Gill’s disability cultural model while engaging with its inadequacies. Prior, however, one must attend to Takala’s (2007) article on disability and gender.
Takala (2007) takes on disability and gender from what appears to be an intersectional position, but states quite early on that she is not disabled or at least does not identify as disabled. Furthermore, her article begins arguing that the aversion that non-gendered and non-disabled subjects experience in regard to disability and gender is largely equal and assumes that both exist purely through stigma attached to bodily features. As Takala’s (2007) analysis proceeds, the mask of intersectionality in her argumentation begins to slowly decompose. “The needs of disabled people are increasingly met”, she says and “women are compensated by maternity leave” (127). Her argumentation approaches a powerful point that should be echoing Crenshaw, but instead complains about how men are excluded from (likely, radical) discussion groups that focus on Feminist authors (Takala, 2007,p.129). Finally, Takala’s (2007) mishandled analysis focuses on how success is supposedly stigmatized among oppressed in-groups (p.130). What is Takala’s conclusion? That disability and women’s rights should focus on policy and not culture, because all communities are obviously impossible to form without a series of exclusions. To speak of Takala’s analysis gently, one must find it unusual for someone who admits to participate in neither feminist nor disability radical communities to know so much about the inner-workings of such groups. In the next paragraph, I will use my experience as a queer-crip (who has participated both in radical queer and radical disability rights communities) to correct her mistakes and Gill’s essentialisms.

Of the threads present in Takala’s article, the one most useful is her invocation of an intersectional criticism of single-issue politics. Carol J. Gill would be guilty as charged if such a claim were to be brought against her article on integration. Like the Intersectional theorists of the 1980s, neither my disabled identity nor my queer identity takes precedence; rather, in all of my activism and participation in both queer and crip cultures, I reveal my presence in both sub-groups. Professor Elizabeth Grace of National Louis University and activist Adam Gluntz as well as myself and several others recently coined the term “neuro-queer” as a border between our identities as “queer” and as “neurodivergent”. Of course, both categories are built to be open, but many neurodivergent activists are hesitant to act and speak on issues of importance to radical queer activists, similarly the queer movement has not been nearly inclusive enough for its mad, developmentally disabled, learning disabled and cognitively disabled participants. Just as black feminists forged black feminism and womanism in the late 1970s and early 1980s, the queer-crip movement is experiencing a grand exodus, out of the underworld of silent repression into public view. The nature of multi-positionality categories such as black-feminist, neuro-queer, queer-crip and so many others is that such terms function as bridges. We can keep our cultural identification with multiple groups and activisms, but also cultivate third identities that exist in their mixed and realistic form; as people who are much more complex than any singular label. Thus to add a final step to Gill’s schematic journey of identification: 5. identification with a bridge-group such as The Autistic Women’s Network, The Combahee River Collective and Neuro-Queers allows individuals acceptance of themselves as complex human beings that transcend any singular category but are present in many sub-groups and whose lives contain efforts for liberation in both groups separately and simultaneously.

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Zach Richter is a poet, a graduate student and an activist who is currently pursuing his MS in Disability Studies and Human Development at UIC. Previously, Zach Richter received his BA in English from Western Connecticut State University while spending 4 of his 5 years actively involved in WCSU’s Roger Sherman Debate Society. Zach has been an activist for progressive causes since his participation in the anti-war movement as a younger person to his current work as an activist-blogger on issues of disability and sexuality. Zach is also part of the We Are Like Your Children autistic blogging collective.

  Copyright © 2013 by Zach Richter. Reprinted with the permission of the author.