Each time one of these OpEds appears, remember the scientific racism of Benjamin Rush and his student Samuel Cartwright. Labels matter; the wrong label, used as leverage to strip nonspeaking autistics of autonomy and humane approaches to living, only drags autism public policy back into the abusive world of institutionalization, seclusion, and harm. Don't just look at the attempts to increasingly impose the term profound autism. Ask yourselves why these attempts are happening. Save your offspring and mine. And help all their communication to be accessible, autonomous, and heard.
Thursday, February 2, 2023
Friday, January 13, 2023
The Acceptance Letter
By Kerima Cevik
Autistic Self Advocacy Network
One day, in case you ever feel like knowing more about how you light up our world, I am building a digital hope chest of words for you to read or hear. People say it doesn’t matter what I write. You won’t understand. Ever. But I believe in my heart that you will when it is time to read or hear this.
I know you are always here. I once watched a Youtube video named “Autism Took Mikey.” I never understood that
video. Autism didn’t take you any more than my dark skin made me something awful. It makes me different. Autism makes you different. Not less than anyone. Not more. Just different. I knew you were still with me. You just weren’t being acknowledged anymore. If you flapped your arms, it bothered people. When I said, “My toddler is autistic,” and people responded as if I just said that autism was a car that ran you over, I wanted to slap them. They may think what they like. I see you. You are perfect to us. As you grow and your differences become more apparent, so does the fact that you are still the same exuberant, adventurous and happy person you were before the name autism came into our lives.
I never wanted to cure you. I understood you were different. I feel this difference that makes you unique will somehow also make you successful. The things you did that others found strange or quirky didn’t bother me. They endeared you to us. What drove us to seek answers was you couldn’t speak anymore. And you had no idea when you were in danger. That terrified me. I wanted to know what was causing you to not to speak. And why you stopped understanding when we called your name.
“I see you. You are perfect to us. As you grow and your differences become more apparent, so does the fact that you are still the same exuberant, adventurous and happy person you were before the name autism came into our lives.”
I was relieved when I learned you were autistic. We needed to understand what was going on. And the relief of hanging a label on all these challenges was great. I was still terrified that you wanted to walk toward moving buses. That you stopped answering to your name and your jaw didn’t seem strong enough for you to drink from a straw. But what mattered was that you were still here with us.You can overcome any challenge. You already have. I’m right here in your corner, son. Always. We will fight for what you need to live a full life; as full a life as you can. And autism will not be an excuse. It will be a part of your identity.
I am proud of you. You are one of the bravest people I know. You will continue working tirelessly on any skill you want to master until you prevail. You are extremely patient with those who care for you. When you get frustrated, it is because you’ve tried all avenues to communicate and are not getting through to us. I understand you enough to know I have a good son. A loving son. No mother could ask for more. Thank you for choosing me to help you overcome these challenges. It’s been an incredible adventure so far.
All my love,
Saturday, September 24, 2022
|Stock image of a mother and|
The relief of finally understanding who she is is crushed with fear of yet another layer of retaliation from both the devout Christian family of her ex, who never approved of her and a court that now has ableism to add to their bias against her.
This is Aisha X's dilemma.
Aisha is one of the many Maryland women who have lived the reality of a system in which family court has favored her son's abusive father over her, as DCist/WAMU reported in research here: https://wamu.org/story/19/08/19/fathers-are-favored-in-child-custody-battles-even-when-abuse-is-alleged/ and NPR reported here:https://www.npr.org/local/305/2020/07/29/896692057/lawmakers-and-experts-recommend-changes-to-maryland-s-child-custody-court. All of which led Maryland State Senator Susan Lee to draft Senate Bill 594 in 2020 here.
In July of 2020, NPR published a DCist/WAMU report of research that showed Aisha X's case of a judge favoring her son's abusive father over her in her custody battle was not unusual. The study found that judges favored fathers over mothers in custody battles over children in Maryland–even when fathers were accused of or found guilty of abuse. Quoting NPR:
Professor Joan Meier at George Washington University Law School, and other researchers, provided data supporting the group's recommendations. Meier's research shows that when a mother is accused of alienation, she is twice as likely to lose custody compared to when she is not. But in cases where a father claimed a mother was pitting a child against him to disparage his character, Meier found a judge ruled that the mother's claims of child abuse were unsubstantiated. The study looked at more than 2,000 custody cases involving child abuse, domestic violence, and alienation nationwide.
In Aisha X's case, her diagnosis and faith differences were weaponized to push things in her abusive ex's favor. Her fight for custody of her son is an uphill battle that continues as I write this.
Ironically, in 2016 Maryland Bill SB 765, CINA, Guardianship, Adoption, Custody, and Visitation - Disability of Parent, Guardian, Custodian, or Party, was signed into law.
On paper, the law is supposed to protect disabled parents from discrimination in child custody disputes. Disability Rights Maryland praised the bill's passage as follows:
SB 765 will protect people with disabilities and their families from discrimination in private custody, visitation, adoption and guardianship proceedings by requiring any findings that a person’s disability affects the best interest of a child to be recorded in writing; allowing the party with a disability to show that supportive parenting services would prevent such finding; placing the burden of proof on the party alleging that the disability affects the child’s best interest; and conforming the Family Code definition of “disability” to federal law. DRM was pleased to work with National Federation of the Blind, People on the Go, The Arc Maryland, Maryland Association of Centers for Independent Living, other members of the Maryland Disability Rights Coalition, the National Council on Disability, and bill sponsors Senator Jamie Raskin & Delegate Sandy Rosenberg on this groundbreaking legislation.
This bill was created and initially championed by the physical disability community. Despite being meant to protect all disabled parents and preserve their families, its promise in practice does not seem to be helping those with invisible or intellectual disabilities like Aisha X. Her decade long fight was further complicated by her late autism diagnosis. No organization in the autism or disability justice community has stepped up to help her fight for her right to be the custodial parent of her firstborn son.
One of the unspoken realities in the autism conversation is that many parents of autistic children are diagnosed late. Especially BIPOC women, who are too frequently overlooked or misdiagnosed, can live for years not understanding their disability is ASD. Some African American parents go undiagnosed until one of their kids is diagnosed or they recognize certain traits in themselves that leads them to an eventual diagnosis. Yet neither disability justice groups nor any stakeholder in the autism conversation has expanded their circles of support to include adults like Aisha X and their families. Like many autism-related service systems, legal services are early intervention and childhood centric. Proper legal representation from a team that understands autistic adults can mean the difference between losing one's custodial rights and keeping them. A judge not having any clue about what autism is and how it impacts a plaintiff can see direct responses as brusque or rude. This escalates bias against autistic parents in court.
But here's the critical point of Aisha X's late diagnosis. A competent parent doesn't suddenly become incompetent when they are told they have always been autistic. Systemic ableism drives systemic presumptions of incompetence, and that injustice can lead to courts missing the obvious red flags of abusive nondisabled spouses/ex-partners wanting sole custody of children and ruling against disabled parents.
Ernestine Bunn Dyson, Doreen M. McClendon, Yvette Cade, Freda Edwards, and Jackie M. Lewis were victims of domestic violence who were failed by Prince George's (PG) County's court system despite laws supposedly put in place to protect them and their children. Yvette and Freda were burned alive by their abusers but survived. Ernestine, Doreen, and Jackie were murdered. All reported physical and emotional abuse to authorities, some of whom either dismissed the signs of abuse or claimed they didn't have sufficient cause to justify restraining orders.
Possible Faith-Based Causes of PG County's High Domestic Violence Rates
Activists, by definition, should be at the vanguard of informing and training members of the Family Court system about the high rate of domestic abuse of disabled women. But if faith-based bias is already in the decision-making process of a judicial system, what hope do Aisha X and others have of being believed, much less arguing their cases?
A recent judgment by A Texas judge who ruled coverage of anti-HIV medicine violates religious freedom is a grim reminder that far-right groups have negatively influenced our justice system. This shift in the bias towards cases arguing for religious freedom superseding the human rights to healthcare and a safe family environment for women and children defy secularism as the law of the land. These increasingly extreme and unpopular court decisions debunk the myth that family preservation is an excuse to deny women in PG County restraining orders and the right to be custodial parents of their children.
In cases like Aisha X's, where two parents fighting for custody don't share the same faith, but an abusive parent and their family may share the same faith as people who play critical roles in the Family Court system, bias can destroy the case before any judicial decision. Little things, like deliberately sending a court summons to the Muslim parent's old address, can cause that parent to look as if they are irresponsible. Religious freedom, one of our Constitution's founding principles, was meant to allow all religions or nonbelief to exist without the persecution religious groups fled from in the first place. If those who drafted the Constitution wanted to declare the United States of America a Christian nation, they would have stated that in the document.
The right to practice one's religion or no religion isn't meant to be used as a misogynistic cudgel. And yet Aisha X's situation is another example that the weaponizing of any belief towards a bias against marginalized people is a violation of the human rights that were supposed to make the American experiment singular in its humane approach to its citizens.
Aisha X and many others are caught at the intersections of public policy, religious misogyny, the hierarchy of disability bias in public policy practice, and systemic ableism. Aisha X's case is so shocking that I am considering supporting a mutual aid drive to raise funds for her continued fight to gain her custodial rights.
Here is the link :
Thursday, June 2, 2022
Written on this day in 2017:
|Image of my son's thumb on his AAC device and my right hand holding sunglasses while my left seems to be reaching from our deck and petting a Goose in the yard.|
You know why I get into so much trouble in life? Curiosity.
Example 1. Despite having a wicked sore throat, I am curious about similarities between nonspeaking autistic vocalizations and throat singing. So I am seriously avoiding work by making weird sounds with Mu to see if we can approximate throat singing.
Example 2. I am also curious about whether Mu would be willing to listen to someone giving him directions on how to avoid driving into our backyard pond if I sat him on a riding lawn mower and taught him how to use it to mow the lawn.
Seriously ignorant, ablest people look at him and tell me to grieve. I look at him and say, "I'm curious, son. How do you feel about putting on noise canceling headphones and trying out driving a riding lawn mower?"
Me increasingly curious about whether I should rent or buy a riding lawn mower and put it in the hands of my willful teenage nonspeaking autistic son? Beautiful day outside. Fat loud geese flapping everywhere. Do you all see where this is going?
The reason I believe in Divine intervention is that Mu and I have his dad, my husband Nuri, and as a result, Mu and I aren't sitting in the middle of that pond on a riding lawnmower covered in goose down.
Monday, April 4, 2022
|Image of Disability Voices United Poster Calling|
For a Justice for Isaias Cervantes protest on January
Let's start by discussing The People of the State of California v. Isaias Cervantes, Case No. BA499677.
On March 31, 2021, Isaias, autistic and Deaf, was in a state of meltdown at his home when his sister called 911 for mental health support. Mr. Cervantes' therapist and the family were present at these events, waited outside, and explained to the responding police officers that he was calm, nonviolent, and simply needed to be taken to the hospital. The rest of the story, per LAist is as follows:
In March of 2021, Cervantes was shot and paralyzed by an L.A. County Sheriff’s deputy who was responding to an emergency call from the family.
Deputies say Cervantes reached for one of their guns, but body-cam video released by the department doesn’t clearly show that.
More than six months later, the district attorney’s office charged Cervantes with assault with a deadly weapon on a peace officer.
More than a dozen advocacy groups — including the Autism Society of L.A. — were shocked by the move and sent a letter to DA George Gascón’s office.
Isaias is paralyzed from the bullet that damaged his spine and one of his lungs. The unusual thing about Isaias' encounter is that he survived it. So many others (Steven Eugene Washington, Mohammad Usman Chaudhry, Stephon Watts, Ronald Madison) do not.
I have often stated that police are not mental health professionals and that mental health crises should not be part of law enforcement activities.
Despite the Los Angeles Sheriff’s Department having Mental Evaluation Teams (MET) meant to have health clinicians ride along with sheriff’s deputies since 1993, no MET responded to the Cervantes call.
I believe there are safer ways to handle mental health emergencies, guide individuals and families to humane resources and thereby reduce these catastrophic encounters with police. One of those ways begins with who we call to respond to mental health crises.
Beginning this July, a nationwide mental health crisis number — 988 — is supposed to provide an alternative to 911 and provide more appropriate responses. This is an imperfect start, but it is a start.
In Maryland, no funding has been provided to support the well-resourced systems needed to transition away from the present crisis. If state 988 services go live without funding to manage the spike in crisis call volume, wait times will overwhelm the national suicide hotline meant to take the overflow of calls.
The risk of being killed by law is 16 times higher for neurodivergent individuals with untreated high support need mental health concerns. So reducing calls to 911 and giving immediate support to those calling 988 is potentially a matter of life and death.
I'm not certain why, if the federal government has seen fit to create the 988 health crisis number, they are not providing state and local governments with funding to bolster resource centers across the nation. Could states begin transferring some funding formerly allotted to law enforcement for mental health crisis response into the resources and services that will be shouldering the responsibility for supporting mental health crisis needs going forward?
Maryland lawmakers are proposing a trust to fund our call centers, and California has a bill working its way through its legislature.
Friday, December 10, 2021
|Image of Mustafa, age five, signing to his sister in a gray |
long-sleeved shirt and black slacks. He is a brown Latine
presenting boy with short black curly hair. Image credit
After we got his diagnosis, his sister began teaching him baby sign language. Simple things, to help him communicate his needs. About the time we were struggling to learn these signs with him, both his father and I were working and Musti's sister was going to college. So baby signs began to lag.
One Friday night, we were all exhausted and decided to order a pizza. When the pizza arrived Mustafa rushed to the door and peeked up at the pretty delivery person, a young woman who was working her way through college. Without speaking she looked at him and began signing at him. Mustafa signed and jumped excitedly in response. It took us a moment to realize our delivery person was deaf. She was reading our son's baby signs and body language and totally understood him.
She understood him completely. It was a monumental event for us.
This kind of interaction happened whenever we met deaf people until he entered Kindergarten. Whenever we were in a public space, deaf people simply presumed he was deaf and would immediately sign back, so joyfully and rapidly that it took us moments of standing before them confused before they realized that we didn't know enough sign language to communicate at that pace, and neither did Mustafa.
They didn't just presume he signed. Those who responded so quickly were mostly African American deaf community members. They observed his body language as well as his attempts to sign. We, verbal speech-centric folks, have somehow forgotten how critical gestural language is to communication. But deaf community members have not.
What does a family do when the school system refuses to implement communication as an IEP priority, teachers and staff who sign refuse to respond to their son's efforts to sign his needs, and that family encounters lateral ableism that bars them and their nonspeaking son from learning sign language? Here's one example of what happened to us. His first thanksgiving event at his school resulted in a series of holiday photos posted to the school's webpage which inadvertently showed our son trying to sign to his teacher. The parent who took the photos, upon realizing that they showed our son signing to the teacher and the teacher who was trained in sign language deliberately turning her back on him, warned the school, who took down the photos before I could capture them and bring them as proof to the upcoming IEP meeting that our son was capable of learning sign language. That parent's reward was the school providing her child with a much wished-for item on the child's IEP. Because somehow it was her belief that stepping on my son's right to communicate was necessary to help her child.
His teacher insisted that our son did not have the fine motor skills to learn sign language.
I tried using programs and online resources. It is difficult going and I find that nuance is lost, meaning one might believe they are signing one thing when they are actually signing something else entirely. Then there is the cultural specificity of Black sign language. For our son, the sign language he learns needs to make him a part of his community. Like African American Vernacular English(AAVE), Black sign language should include him. But those who might teach him are not put in a position to be paid for their labor. In our former school district, where the non-speaking student body is disproportionately Black and Brown, no African American sign language teachers were employed. Why does this disparity exist?
In 2014, I watched a documentary of a class in rural Uganda being taught sign language. The ages of the students ranged from 9 to 80. They were taught by a teacher who was given intense sign language training in order to return him to rural areas and teach people of all ages born deaf or deaf as a result of illness how to communicate through sign language.
We are the supposedly developed nation, yet we do not do as much for our own nonspeaking adults and children. Despite the challenges of the Ugandan program and the ableism displayed in the documentary, deaf rights activists are fighting to give their community the gift of communication. It is that important.
Meanwhile, Mu, my husband, and I are back to the task of trying to find a way we can all learn to sign properly in order to help our son communicate beyond baby-sign. There is a universal sign language. Perhaps we will try that. But the reality of our sign language story is that sign language learning should be free and open to everyone who is nonspeaking, in the same way, it is being offered to the deaf rural citizens of Uganda. The basic sign language lessons featured in the documentary above were life-changing for the people who walked miles to get them. The lessons lasted three months. In three months, these people went from isolation to community. The idea that people with ID/DD are not worthy or able to learn sign language is a crock. Lateral ableism as a barrier to access to anything that might help another disabled human is intolerable. Sign language is affordable, can be learned at any age, and can be life-changing.
So why is something so affordable, basic, and scalable not part of language support for our nonspeaking loved ones and their families? We are such a technology-centric society that we tend to forget that sign language is a communication method that can be gained by all nonspeaking autistics who don't have OT challenges regardless of class and income level. When we say communication first, that needs to mean that all available methods of communication should be considered for AAC.
Thursday, December 2, 2021
|Darius McCollum image of an older African American Male|
with a short full beard. A blurred rail car behind him.
He is wearing a black ski cap, black coat with a dark blue
zipped up inner-lining. Image credit Adam Irving
“But all our phrasing—race relations, racial chasm, racial justice, racial profiling, white privilege, even white supremacy—serves to obscure that racism is a visceral experience, that it dislodges brains, blocks airways, rips muscle, extracts organs, cracks bones, breaks teeth. You must never look away from this. You must always remember that the sociology, the history, the economics, the graphs, the charts, the regressions all land, with great violence, upon the body.”― Ta-Nehisi Coates,
Darius McCollum memorized the MTA map by age eight, spent his entire adult life volunteering for the MTA, and was criminalized and jailed for it. He was given a diagnosis of Asperger's by a prison doctor at age 40. He has all the characteristics of a prodigious savant. But we will never know, because, at age 53, he has been given the final blow to the crime of being autistic while black, damned to an institution where he, who is not violent, does not belong.
I would like to live in the dream that had Darius McCollum been born in say, 1992, he might have been diagnosed with Asperger's syndrome while still in grade school. Perhaps, if he hadn't lived years before people acknowledged or accepted that Black children could be autistic too he would have made the evening news for volunteering at the MTA while still a young autistic child. Perhaps he would have been rewarded for his intense interest in the transit system and earned a training internship with accommodation for his disability. Perhaps he might have transitioned into a job as a disabled adult. Perhaps when the MTA rejected his repeated applications for work, he might have found legal representation and sued for discrimination based on disability. Maybe, in a parallel universe, Darius McCollum is living a happy life doing the only thing he has ever wanted to do, work as an MTA employee.
Perhaps he would not have felt the urge to drive a bus six stops on its route, flawlessly picking up and dropping off passengers as any driver would do, at age 15.
But I know that Ta-Nehisi Coates is right. I always wake up from these reveries feeling gut-punched in the truth that everything lands with great violence upon the black body.
Darius has the world's thirst for entertainment and the media's lust for ratings against him. News stories about Darius are less like human-interest reporting and more like circus creations at a world's fair where he's the oddity du jour and his suffering saga is a marriage of stereotypes, Jim Crow minstrel shows of a disabled black body. How can we expect justice when the structural racism of government overreaction to any nonconforming Black male body stands like a mountain in every Neili, Arnaldo, and Darius' path?
At age 53, the doom of this verdict is the final hammer blow to this singular mind. It is too much like the way the widow of Blind Tom Wiggins' slaveholder tricked his mother into signing over custody of him with the promise of freeing him then used the courts to declare him mentally incompetent simply to enrich herself. Tom Wiggins is known as the last slave in America because of this abuse.
I haven't studied all the publicly available charges piled up against him. But from what I have read, they are marked by McCollum following proper procedure as he did while volunteering. He gets "caught" because this is not behavior he has the impulse control to eradicate on his own. He has been labeled a thief and given a devastating punishment for compulsive behavior. Meanwhile, he has become the subject of a movie, and others will profit from his suffering.
What do I mean when I claim that Darius is caught in the sinkhole of racist ableism?
Sometimes it is easier to see the reality of this when black lives are compared with white ones..