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 Garibaldi 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, na├»ve 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:

Saturday, July 29, 2017

The De-voiced Black Disabled Activist

"Not everything that is faced can be changed, but nothing can be changed until it is faced."
James Baldwin

Image of the author in profile, an Afro-Latina disabled woman
with gray natural hair,  looking sadly at something in
the distance. Image rendering Prizma credit K. Cevik
Unless you are one of us,  a person carrying the label of being disabled while Black, you cannot possibly understand the visceral nature of moving through space with a target on your backs, and knowing your body is in constant jeopardy because you are both Black and disabled. It isn't the same if you are disabled with racial privilege. It isn't the same if you are another intersectional combination. Because there are those hundreds of years of struggle to prove we weren't chattel while simultaneously trying to prove that as disabled people we have a right exist as well.

There continues to be experimentation and involuntary sterilization and redlining and all the systemic racist ableism in between. So it broke my heart to see Dr. Perry's article Police killings: the price of being disabled and black in America even though I’ve included it below, not because it wasn't well written, nor because he didn't interview and cite Black disabled activists, but because he continues to benefit from our suffering and tragedy by having the privilege to be able to gain platforms for his writing while being neither disabled nor African American, having an education unrelated to disability rights or critical race studies, and operating from a position of privilege that a majority of Black disabled activists cannot.

That is the very definition of white privilege.

Nor could we possibly produce this thoroughly researched an article with this turnaround. Not with the meatspace struggles of surviving with the labels we carry that each day demands. Add to that those who have responsibility for families without equal access to services and supports, and there is not even a level field for competition.

This article may have been well-written but this was our story to tell and we were not granted the opportunity to tell it without appropriative white narration, and in a time of oppressive white supremacy, it feels extremely wrong that a white cis male with no background in disability or critical race studies should both write this and brag about gaining a payday for his writing about us without us, particularly since in the past he claimed to be an ally. He now defines himself as "accountable."

At a time when we have been handed a verdict that makes it open hunting season on myself and my disabled racial peers, unreasonable or not, it hurts me that we again end up nothing more than photographs and quoted content in our own story, analyzed, explained and narrated by an author (however kind and making an effort to present the topic to a global audience) who is neither our race nor disabled.  It is too much like profiting from our suffering. My mind understands the good intentions but my heart says good intentions pave the road to white patronizing patriarchy. Perhaps it is my fey mood and only now getting to read this thoroughly. But that, however wrong to others it may be, is how I feel.

Feel free to tell me how you feel about this article. I’ll come back to it when I’m less sad.

https://www.theguardian.com/us-news/2017/jun/22/police-killings-disabled-black-people-mental-illness

Monday, July 17, 2017

Birthday Letter: Parenting Autism In The Age of Trump

I wrote this for my son on his birthday last December. It was painful and personal, and I withheld it for this many months without publishing it because it hurt so much to write it.
My son, surveys his backyard kingdom, holding
his iPad AAC device and wearing a sky blue t-shirt
that reads "Noncompliance is a social skill" available
@RealSocialskills photo © Kerima Cevik
 I was in doubt of many things after some post-election ugliness had visited our town, a sign of worse things to come. I remain concerned for his future and ours.


Happy Birthday Son,

In the 14 years since your birth, I have been forced to witness and experience some pretty sad and disturbing things. We are living in some very polarized, hate filled times. How will I be able to talk about this transition to your teens you are making that changes everything? But I must. Not because it will help you manage the legacy of trauma that is a part of from our racial heritage, but because talking about this is the only path to exorcising it from our futures.

You are 14 now, and I am not simply afraid. I am terrified.

Like your uncles and forefathers, you are big. It isn't just a matter of weight. You are a massive, tall, handsome 14-year-old. Not particularly large or small for our people. But your soft mustache and curly hair are making you look older. Then there is the look of awareness in your eyes. That is the thing that petrifies me. It is the look of understanding that might lead a policeman to misunderstand when you can't respond, to reach for a gun should you reach for your speech device, to shoot should you stand there trying to process why this police officer is shouting and conclude there must be danger and try to run away. No amount of police training or training of you on how to be a compliant brown body will change the statistics. The very high risk is that you, nonwhite and disabled, might meet catastrophe one day.

Those people who are supposed to provide therapies, supports, and services for you always ask me "How do you see your son in 10 years?" What the hell does that mean? I don't think in ten-year plans. I think in the only way we can think. I think in the universe of the breath. I inhale, wait, exhale that we are alive, in this moment, that we have survived harm another day in this now blatantly hyper violent world.

How I see you doesn't matter. How you see yourself matters. That stupid rhetorical query reeks of the presumption of your incompetence. The stench of the recalcitrant automatic mumbling of words that translate as "his cognition will remain static" and,"technology will not change the quality of your son's life." When in fact the largest improvements in the quality of your life did not come from the billions of dollars in autism research but in an idea that everyone thought was inane. The idea that became the iPad.

When I say they don't presume your competence I don't mean I want them to presume you are an autistic savant. It does not mean I expect you to wake up tomorrow with the ability to speak fluently and the ability to do 10-dimensional calculations in your head. The baseline gap between how the people who are supposed to be helping you view you and how you see yourself can be resolved by their simple adherence to the law. They need to accommodate you and stop asking me to tell them what you want when they actually don't care what you want or what I think about what you want.

One of my favorite photos of my son, age 5, in his wheels,
waiting for his ride to school. Image of a Latino presenting
male in a blue hooded coat, curly dark brown hair can be seen
just under the coat's hood. 
You are a teenager now. Remember that son.They must ask you to indicate a response to that aggravating query or any other question they have for you. This requires presenting the question in a communication structure that you are able to receive clearly, understand or try to grasp how you communicate and respect you enough to wait for and hear your response.  It isn't my life. It is yours. I cannot tell you how to be or where I want you to be in ten years.  Our goal as your parents is that no matter what happens, you survive, are safe, have lifelong community-based shelter, and that technology assists you to such a degree that you can live your autonomous life with minimally invasive supports or services.

They are supposed to be helping you and setting goals with you for you to meet.

They never speak of the elephant in the room, the fact that the world has shifted and we are now the objects of even greater hate than before. How does that fit into their transitioning youth plans? What are their ten-year plans for surviving that hatred, xenophobia,  that ableist racism?

How can you find your own way,  when everyone around you now works to diminish you?

Everyone will stand in your path and repeat what you can't do. You must will a path around that. Somehow, your father and I must survive this time of hate backlash and help you will that path. My son, you can do it. Find your own way and indicate to people what you want. Make your "voice", you will, heard. While we live, we will stand by your right to your agency in your own life. All you have to do is not give up.

Respect yourself no matter what others do or say to you, around you, or about you. Shake the insults off the way you shed water when you shoot upward in the pool or brush rain from your face.  Water is only good doing its job, cleansing or nourishing our bodies, our lands, our communities. Insults are like water. They are only useful doing their job. They don't reveal truths. They alert us that we are in the presence of those who would do us harm and that is their only purpose.  Remember the warning, and put either physical or mental space between those elements and you.


I want to see you here in ten years, vibrant as you are now, thriving. I want to see you happy, unafraid, unhurt.

I am usually not afraid of much at all. Thank goodness, I have lived a wonderful life. I've had several brushes with death, and therefore my soul is prepared. But I fear the rise in hate when it was already bad prior to the installation of the present administration. The weakest most spineless creatures have gained courage and they are out in force, saying the disabled should be euthanized, using black and brown bodies for target practice, shouting Muslims should be in camps. Keeping people from using public toilets as they once did my people.  And this time, I have not been able to abate this rising terror.

Your very name makes you a target. That fact is sadly ironic since you were named for a staunch secularist. You have no idea what this is all about. You are innocent of any understanding of what this means but your name, your great grandfather's name, may cause you to come to harm, and that has frozen me in fear.

And yet we must endure. We must continue to show compassion, mercy, and humanity. Not because the dream has been deferred beyond all recall, or because I believe love can cure all. But because it is our human right to live safely in our own homeland. We are Americans, my son. This is our home as much as any citizen's. We have a right to live here in peace.

Your opinion of yourself can elevate or devastate you.

I hope you know by now that you are loved. We have worked very hard to make that clear your entire life. There is no question that you are a wanted and welcomed member of our family. There was great joy when you and I survived your birth. But what is more important, and what I want you to take forward into the rest of your life is that you are respected here. When society is structured to discriminate against you because of your racial, ethnic, and neurological heritage, remember we are here, in your heart, we are your haven.

Remember I am not or was ever ashamed to be in this black body. I am proud to wear the visible genetic legacy of my ancestors. Each time another person gets away with murder, it is society's shame not ours. That is not the fault of our skin color or any divergence in us. That is the burden of those who facilitate and enable the harm that is escalating against us.  It is important that you never be ashamed of who you are, and have patience and understanding of yourself as you are.

Don't stop communicating however you can.

If you cannot use verbal speech that doesn't matter. What matters is that when a means to communicate is presented to you, you take full advantage of it and use it to make your voice heard. I know it isn't easy. Being oppressed means that attempts will be made to instill the feeling in you that you are less than your peers, that you are lacking, that you don't, or can't. Don't ingest that poisonous rhetoric. How others see you is something you can build with your own will. Your will is prodigious. That is your strength and your genius. That indomitable will that never gives up the goal you set for yourself. Go after communicating son.  Make yourself heard. They can't speak for you if you have a voice that exists whether it comes through your vocal chords or not.

Don't allow anyone or anything to goad you into anger. Inciting anger is a trap that creates an excuse to harm you.

Mu with his second iPad AAC, wearing sunglasses,
trying to decide he really wants to leave the house. Yes, blue is
his favorite color; he's wearing his blue polo and gray
shorts. ©Kerima Cevik
This is a label that is forced on us, and we must not allow others to try and enslave us through this lie. We are not inappropriately angry people. It is not wrong to be angry about injustice, about harm, and about wrongs sanctioned by those who claim to wish to protect society and defend it. Anger in and of itself serves a purpose as long as it doesn't drive your actions. But anger should not be a badge forced upon us. Do not allow it son! You have the patience of Job. Remember to keep applying that patience to your life regardless of what people who may wish you ill try to do to push reactions from you. I know you can do this son! You are a great personality and I want everyone to know the depths of kindness and compassion you display. Remember what I said. What people try to label you is not what matters. Who you are and how you define yourself matters. Anger is meant to be a flash of emotion that passes like a lightning storm. You show us that the false stereotype of the silent, violent, autistic male is just that. Don't allow situations or people to gaslight you into accepting states of mind or states of being that are not in your nature.

Remind me and others that you are not a child.

All parents have to be reminded that their children are growing up and growing older. I will get nostalgic, I may waver. I may have the best of intentions but treating you like you aren't a teenager is wrong. It is your job to remind me. It is going to take more than your burgeoning mustache. You have to be courageous as you are son; and stand up for your right to increasingly have a say in your own life, even if that means standing up to me, your aging mother. That is your task my darling, to advocate for yourself. It is mine to get out of your way and allow you to do that as much as I can before I'm no longer here.

Never neglect yourself.

Care of self, remember Mu. The body you occupy is the only thing you have that is truly and uniquely yours for as long as you need it. It is your spaceship in this cruel, alien land. Take care of yourself and your home environment as much as you can. Take care of your mental health, your hygiene, your dental health. Do whatever you need to do to remind yourself you matter. Rest when you should. Health is something you can't regain once you've lost it. My life was at times very hard, and as you know, my health has suffered from this.

I am still terrified. Every day we step out of our front door. Into our backyard. I am afraid they will harm us. But I am also very proud of you. You are growing up.

I do love you with all my heart, my son. I don't know what the future holds for us. Things are looking very grim. But more than love, I respect you. Live the rest of your life knowing that if only me, your father and your sister respect you, that is more respect than most have all their lives and all the proof you need to respect yourself.

Have the happiest of birthdays Mustafa. May we all survive the next ten years.

Love, always,
Mom


NOTE:
The v-neck shirt is designed by Ruti Regan and available in limited edition lots at https://www.bonfire.com/real-social-skills-t-shirt/
Photographs are posted with permission of the subject

Thursday, June 29, 2017

#AutisticWhileBlack: Justice For Marcus Abrams

Marcus Abrams after his encounter with police.
Image of the face of an African American male
with injuries to his face Credit City Pages
On Monday, August 31, 2015,  17-year-old Marcus Abrams, legally blind and autistic, was the victim of a catastrophic encounter with Metro Transit police in Minnesota.  Marcus, now accused of punching an off-duty police officer working security at a nightclub, is being scheduled for a competency hearing. He brought suit against the officer who was dismissed from the force and Abrams won a small settlement. Yet here is what the City Pages first reported about what happened back in 2015:

"Tuesday night after Black Lives Matter St. Paul wrapped up its protest of Gov. Mark Dayton, the group gathered in front of the governor’s mansion to hear sisters Jacqueline Vaughn and Neenah Caldwell recount a harrowing interaction between their 17-year-old brother and police.
Vaughn told the crowd that on Monday evening her brother, Marcus Abrams, who is legally blind and autistic, "was coming home from the State Fair and off of Lexington and University was beaten brutally by the police. He was beaten so bad he was in a seizure and declared dead for 15 minutes." She added that police accused her brother of being under the influence.
According to Metro Transit spokesman Howie Padilla, police were driving by the Lexington station at about 7 p.m. that day when they saw Abrams on the light rail tracks, “a dangerous situation for anybody.” Officers asked Abrams to get off the tracks, so the teen jumped back on the platform. Officers then began to question him.
What happened afterward is under review. Video footage of the station is not yet available to the public and Padilla isn’t ready to confirm exactly what led officers to take Abrams to the ground. He said the teen suffered a split lip, though if Abrams also went into a seizure, it would have been beyond the officers’ ability to recognize it definitively.
Padilla said officers eventually called medics and took Abrams to the hospital, where they discussed what happened with his mother. Abrams’ mother said she intended to file a complaint, though has not done so as of Wednesday afternoon.
“After the mother notified us of the teen’s challenges and issues, we determined that he should go home with his mother rather than the juvenile detention center,” Padilla says.
On Tuesday, Vaughn said it was a witness who called an ambulance to take her brother to the hospital."
60 #BLM protestors marching to the Governor's office. Credit
City pages.
Marcus, now 19, suffered a seizure from the beating and was declared dead for fifteen minutes. Please explain how someone legally blind goes from being beaten to having to face charges of attacking an off-duty policeman and now facing a competency hearing? The rapid deterioration and perversion of this case force back haunting memories of the case of Neli Latson. Beyond tactile issues and issues of gait and sensory concerns that have very little to do with competency but are part of an Autism diagnosis, as someone who was blind for a time there is nothing more invasive than being touched without one's consent. It is terrifying regardless of the degree of disability to have some random hands laid on you by people who you may not be able to see well enough to identify. 

Note the lines I highlighted. 1. Abrams followed instructions but was later subjected to such a beating that he had a seizure. 2. The officers' ability to recognize a man having a seizure was said to probably be beyond their abilities. 3. It was a witness who called an ambulance to take Marcus to the hospital. Video footage was not released to the public. It would be revealed later that Marcus was placed in a chokehold preceding the beating.

I don't know if there is video footage from this latest accusation of assault where he was also tasered.
I can't imagine what a taser does to someone with a seizure disorder.

The story of Marcus Abrams is parallel to the story of Reginald "Neli" Latson. After four years of everyone sitting on their hands and Neli suffering the permanent effects of being placed in solitary confinement,  people came together to help Neli's attorneys and they at least freed him from one hell, that of the criminal justice system, but he is still being held in confinement within a facility in the mental health system when he should never have been in either place.

Will we sit on our hands and watch another young man, blind and autistic while black, have his life destroyed like Neli's? Someone has to act now. Someone needs to reach out to #BLM in Minnesota, to his mother and sisters, to his attorney. This time, let's do something before he is irrevocably harmed. 

Let's see how well the white activists who usurped the voices all too familiar with the narrative of the black disabled victims of catastrophic encounters with police step up to the plate now and fight for those whose victimization and subsequent unjust criminalization they've profited from. This is where the bill, for individuals who treat the black disabled body like data to be collected for discourse and display and the human victims of horrific harm like revenue streams and potential training, speaking, and writing for pay fodder can learn what true advocacy means. Marcu Adams should not be stripped of his civil rights and committed to a mental institution. Time to save a life about to be destroyed. 

DO SOMETHING. 

#SaveMarcusAbrams, #Blind and #AutistcWhileBlack

Resources:
The Case of Marcus Abrams
The Case of Neli Latson
Reginald Latson's case points to a major scandal in US prisons:

Tuesday, April 18, 2017

#AutisticWhileBlack: What Happened To Kennedi High?

In the midst of the national media attention on D.C.'s missing African American girls, one young woman. Kennedi High, 16, Autistic and African American, left her High School in North Baltimore upon school dismissal on March 8, 2017, and disappeared for six days. She was located by the Baltimore Police and returned to her family, but the mysteries of how she disappeared, what befell her while she was gone, and who was responsible remain.

Kennedi has no history of running from home and would never stay out overnight. After talking with Kennedi, her mother is convinced she was the victim of human trafficking. The police initially dismissed the idea but are now investigating.



Autism organizations, disability rights organizations, parents of autistic youth, autistic activists, in short, every stakeholder in the autism conversation should be following this case and demanding answers.

They aren't.

1. Kennedi described to her mother being passed to different men each day in six different locations. She is quite clear on what happened to her.  Police consider her diagnosis first and therefore have a presumption of her incompetence. They did not take her account of events seriously until her mother repeated Kennedi's statements to the press and remained adamant that she believed her daughter was victimized and harmed.

2. Kennedi supposedly left voluntarily with someone she met on the Internet. Kennedi doesn't own a cell phone.  How did she meet this individual? This is critically important. Was someone allowing her to use their phone? Is someone from her school or community complicit in what happened to her?

 Right now, the therapeutic standard in Maryland for 'treatment' of autistic people from early intervention onward focuses on behavioral compliance applying ABA first and foremost. Years of this resulted in teens who comply with the demands of any authority figure. In short, we are allowing our children to mature into easy prey for predators by acquiescing to their submission to a compliance reward structure that can be perverted and abused to harm them. We are so caught up in extinguishing behaviors in our offspring that we erase their ability to say no or defend themselves. This system of autism behavioral management doesn't teach recognizing and avoiding predators, bullies, and abusive people. This has to change.

3. Particularly for autistic families of color, the demand placed on us to allow our autistic children to be made passive and compliant to all is enforced viscously. If autistic male students are labeled "combative" or "aggressive" by any authority figure who simply doesn't feel like dealing with them they are immediately criminalized and suspended or expelled from public school. It is not unusual for schools to call the police to arrest students for school-related minor infractions. All of these potential risks that their children might be disenfranchised from school activities, aftercare, and community participation pressure parents of autistic students of color to accept extreme compliance in their children as "therapy" and "improvement," and "success" of ABA intervention.

4. Everyone in the autism conversation needs to step up now and follow the investigation of the case of Kennedi High. She deserves to be believed and heard. The lack of comment, interest, and mention of her case in our community is typical of the erasure of autistic people of color that I constantly write about, to no avail. What happened to her needs to be investigated and resolved and those responsible for kidnapping and harming her need to be arrested and punished. I am calling this a kidnapping because she was taught to comply and therefore her ability to object was stripped from her.

Focus on finding solutions to the cyclic victimization of intersectional autistic populations in general and African-American autistics, in particular, is largely absent from the annual month-long awareness and acceptance events of Autism Month. The entire purpose of #AutisticWhileBlack was an attempt to spotlight issues like this one and people from our own community who are victimized yet pass quickly by our newsfeeds, a single soundbite that blips out of sight and out of community thoughts. Meanwhile, bloody online battles are being waged on the merits of blue hair dye, causation, and puzzle piece lapel pins.

Autism month is meant to be for and about the lives and needs of autistic people of all ages and demographics.

Make Kennedi matter. She's alive, and she'll need help recovering from this. Someone has to care. Where are the autism organizations who are supposed to be fighting for her? The fact that I must continually remind our community to not erase our victimized youth is beyond unacceptable.

 #JusticeforKennedi.

Resources:
The Story of Kennedi High, #AutisticWhileBlack
http://baltimore.cbslocal.com/2017/03/17/mom-believes-daughter-was-trafficked-while-she-was-missing/

http://wtop.com/maryland/2017/03/baltimore-police-seek-help-in-finding-missing-teen/

http://www.theroot.com/baltimore-police-requests-publics-help-in-search-for-mi-1793210175

Friday, March 31, 2017

Against the Erasure of LaVonnya Gardner

Image of LaVonnya Gardner's AAC board with the written
 and PEC symbol sentence "I use AAC everyday and I Love it"
written on the display panel above the PEC images and wordsin orange, pink, red, green, and light blue squares. Credit
LaVonnya Gardner, Twitter. 
 Black, deafblind autistic activist LaVonnya Gardner died suddenly in late August of last year. She was someone I was proud to call a friend.

Her death was particularly heartbreaking to me and mine. To understand what LaVonnya simply existing meant to me and my son Mustafa, you have to realize a few important details. LaVonnya understood what being blind meant, so we had that common ground because I was once blind for a time and it was assumed I would wear a prosthetic left eye and be blind permanently. LaVonnya understood what it meant to a Black disabled parent to an autistic child in the DMV (the District, Maryland, and Virginia) because she was the mother of an autistic daughter. LaVonnya understood what it meant to be a nonspeaking autistic who used AAC to communicate because she was a nonspeaking autistic adult who used AAC to communicate. LaVonnya knew what it meant to navigate the world as a Black nonspeaking autistic adult, and she had good, practical advice for my autistic nonspeaking son about survival as a Black autistic male in a hostile world.

She built a library of YouTube videos and AAC related social media posts, knowing her own import to nonspeaking autistic Black youth. She, activist Lydia Brown, and others were the founders of The Washington Disabled Students Collective. My hope was that her body of work would live on should she pass away and that she might also leave the legacy of her intellectual property for her daughter and others it might help.

We had an agreement to meet in the Smithsonian gardens with our kids in the Spring. You really don't understand the impact someone has on your life until they are suddenly gone.


LaVonnya Gardner.  image of a Black woman with long braided hair
wearing a pink blouse credit LaVonnya Gardner
I realized in February that the Amplify Autistic Voices project, which I had decided to end, had LaVonnya speaking about herself in her own words. I stopped my plans to delete the blog. I could not erase her. After her death, a relative she did not get on with insisted a name she left behind to move away from an abusive past was her name. That person disregarded her final wishes and tried to collect money from LaVonnya's grieving friends and colleagues. Dozens of her instructional and advocacy videos are erased from her YouTube channel, and only two videos on her Beautiful Unicorn channel remain.

LaVonnya helped many parents and autistic children, both independently and in support groups. She had a patience with parents that I sometimes do not have. She was an activist who stepped up as much as her health allowed. She was excited and looked forward to working with my son and spending quality time with him because they were so similar. I cannot begin to express what the loss of her AAC instruction videos means for those who can't call or message her anymore.

If you have any photos, videos, digital content of LaVonnya's please post it on her memorial Facebook page. I don't know anyone else like her, and I doubt I ever will.

LaVonnya Gardner was my son's role model. She was the living proof that nonspeaking deafblind persons could live, love, produce and parent disabled children, live autonomously, and speak up for themselves.

She was a beautiful Unicorn who should not be erased or forgotten. Help me make certain she's remembered.