AutisticWhileBlack #SaveDarius Criminal Justice in Black and White

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, Between the World and Me

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 of 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. When he was in another state, I wondered why it was not okay to give him a small bus, a supervised rural bus route, and allow him to spend the remainder of his days driving it. 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 side by side comparisons happen. So let's look at turning points in the lives of two teenagers with the same diagnosis of Aspergers.

 Blogger Brobrubel summarizes criminal justice and government overreach by reminding us of what justice looked like for Jack Robison, and Neili Latson both were teens with a diagnosis of Asperger's  Despite the use of an ableist definition of autism, Brobrubel shows the disparity in our criminal justice clearly.
Here is his 2011 essay, Autism in black and white.

Please read it and try and understand the reality of being Autistic While Black in America.Then share this, and remember that we who are African American are the first to feel this weight of violence but we are not the last. Injustice expands like a balloon if those who believe they are protected from it ignore it.
Peace.

"The Web site Liquor & Spice caught this in the New York Times this weekend involving a 19-year-old kid named Jack Robison in Massachusetts with Asperger’s syndrome, a form of autism:

" A chemistry whiz, he had spent much of his adolescence teaching himself to make explosives and setting them off in the woods in experiments that he hoped would earn him a patent but that instead led the state police and the Bureau of Alcohol, Tobacco, Firearms and Explosives to charge him with several counts of malicious explosion."

" By the following spring, he would be cleared of all the charges and recruited by the director of the undergraduate chemistry program at the University of Massachusetts, who was impressed by a newspaper account of Jack’s home-built laboratory."

" And then caught this information involving a case in Virginia".

"Reginald “Neli” Latson, is a 19 year-old autistic young man, who on the morning of May 24, 2010, sat in the grass outside the local library in Stafford, Va., and waited for it to open. Police allege that it was reported that there was a suspicious black male who had a gun. Deputy Calverley then approached Latson and searched him for a gun. No gun was found. Calverly asked Latson for his name, and Latson refused and tried to walk away as he had committed no crime. Calverly then grabbed Latson and attempted to arrest him without reading him his Miranda Rights or calling for backup.

After a 3-day trial, Latson was found guilty of assaulting a law enforcement officer, among other charges, and 10 1/2 years in prison was recommended. Latson’s defense centered around the fact that he has Asperger’s syndrome, part of the autism spectrum, ...  "

" Massachusetts didn’t see a crime in making explosives at home. Virginia saw a crime in waiting to go to the library. Robison was blowing things up. Latson was waiting for the library to open. Robison is rewarded. Latson is going to jail."

" "Robison is white. Latson is black." 

"We don’t want to admit it, but race does matter."

Facebook Notes: Everyday Ableism

Image of Mu, a Hispanic presenting biracial four-year-old male
in a blue hooded coat sitting in a special needs stroller Credit Kerima Cevik

When Mu was very young, we used to make these contrarian decisions on occasion just to fight the power. One of those decisions used to entail going out to family brunch on Sundays to places where people my color married to people Nuri’s color and producing offspring with our son's biracial identity and degree of disability were not welcome.
I sometimes don’t know what we were thinking, other than the fact that in this day and age, we should have a right to eat where ever we wanted.

So it was that we found ourselves at a particular location of Atlanta Bread Company on a Sunday for brunch, and Mu was about the age he was in the featured photo above. During these outings, the goal was never to stay longer than he could tolerate. If I saw the early signs that he was not going to take anymore we had a protocol, and that was Nuri paid the bill and packaged uneaten meals while I got him back in his wheels and he and I rolled out of the restaurant and into fresh air asap.

We usually gave him about 10 minutes before his tolerance was up. 15 minutes if the food came out quickly and there were no loud machines or blaring music. 

I settled him out of his special needs stroller and helped him prop comfortably in the booth next to me. He was sitting, standing, stimming, vocalizing happily and basically being autistic. We gave our order, Nuri asking for Mu’s food to be brought immediately and spoke quietly, being ready to grab for Mu quickly if he tried to lean over too far or otherwise engage in acrobatics. This was a carefully orchestrated dance of movement, stimming, and conversation, punctuated with occasional parental rescue lunges and replacing Mu in his seat or helping him eat his brunch as it came to our table.

While we were eating on this day, we were subjected of course to gaping stares, particularly from one stylishly dressed elderly white female in makeup that she wasn’t aware settled in the creases and lines of her face. She was eating with her husband and another couple directly forward and to the left of our booth. I deliberately ignored her until Mu had reached his tolerance limit. I quickly lifted him into his stroller and only then realized she was determined to block Mu’s stroller from exiting by pushing her chair in our path. 

“You know, our daughter has one of those,” she said to me. “Excuse me?” “How do you mean?” I answered. “One of those.” “Like your son.” “A (insert r-word) kid.” “Did you know there is a place called the Arc where you can leave him so you don’t bring him here?” “He’s better off there with his kind.” There was a collective intake of breath in the restaurant. You could hear a pin drop. 

I smiled at her, a smile our daughter tells me is terrifying, deliberately pushing Mu’s chair closer. He became more agitated and threw a sharp vocalization at her making her flinch.“I know the Arc very well.” “Do you want to know what they told me about my son?” I answered loudly enough for the whole restaurant to hear while retrieving his favorite stim toy from his backpack and handing it to him to calm him. 

“Sure.” she replied.
“The Arc said to take him out in his community, everywhere, all the time.”

I held my head up in righteous indignation and Nuri suddenly stood beside me looking down at her and said: “is everything alright here honey?” We both stared her down and red-faced, she was forced to move her chair forward. Several other diners, embarrassed, moved chairs and tables to allow me to wheel Mu out of there. Two people came up to us on our way out to apologize for the woman’s behavior. A waiter apologized and held the door open for us. Nuri waited for his credit card and joined us outside.

Once we were on the tree-lined walk home, Mu immediately calmed down. Nuri took over the job of pushing the stroller. It was a beautiful day for a leisurely stroll outside. After about five minutes we looked at one another and burst out laughing.

I leaned over and lightly ruffled Mu’s hair. “Well done, Mustafa,” I whispered to him. 

This isn’t an unusual event. It just ended well. It happens so frequently that sometimes I forget it isn’t right nor it is the way other families have to live.

We are fortunate enough to love one another and see the bad attitudes of others towards our marriage and our son as their problem rather than blame him or his neurology for their discomfort. He is a long way from the wiggly child he was at restaurants now. But his disability is apparent, and we still get the gaping stares, the blatant ableism, additional racist comments, and the attitude.

I don’t enjoy staring down ableist old white ladies who despise their own grandchildren.

But then again, no one is going to denigrate our son or her grandson for that matter. 

This is the job of being parents.  This is also my job as an activist. 

These are the people and the mentality we are trying to counter. It is a hell of a job, but somebody’s got to do it.

To all Autism families. It isn't their neurology's fault. The fault is in generations of people who weren't brought up to know that different doesn't mean undesirable or less. It just means different.

Onward, to battling the injustice in a world where our children do belong, to give them their rightful place in society.

Standing At The Intersection of Adolescence, Race, and Disability

Police badge, credit Wiki media commons

This post may wander a bit. Recent events have made me  very emotional, shocked and sad.

Our son is twelve.  His father, sister and I have spent a major part of his life trying to meet a single goal before his thirteenth birthday. We have been trying to ensure he is equipped to survive his adolescence without being killed in a catastrophic encounter with police. He has been fortunate, and so far, safe. But recent events make it clear that we must act in some way to change the way things are or chances are, he may not be safe in the future.

When I realized that roughly 70% of people with disabilities encountered law enforcement more than once in their lifetimes, learned how many were victims of abuse and crime, and how many disabled males of color died in such encounters, I went to Annapolis to ask for an autism training bill for first responders. I later came to the realization that the training concept is inherently flawed and limited in its success.  For police officers, in particular, training them in awareness of autism and how someone autistic reacts to sirens, strobing lights, and people shouting at them wasn't the solution to the problem of keeping our son and his nonspeaking peers from accidentally being shot or wrongfully arrested in a police encounter.  Particularly for autistic and other neurodivergent males of color, police training in other states did not deter or reduce catastrophic encounters. Understand that  Freddie Gray was diagnosed with disabilities resulting from lifetime exposure to lead paint poisoning common to the low-income housing in West Baltimore. Freddie Gray was neurodivergent. His death is not counted as a Black disabled catastrophic encounter death but it should be.

 I have recently realized I must accept the idea that just about the only way to ensure our nonspeaking autistic son isn't harmed is instilling in him that he must avoid the police as much as possible.

The only legislative goal that will reduce catastrophic encounters with law enforcement for neurodivergent males in general and neurodivergent Black and brown males, in particular, is legislation aimed at not placing them in the path of police, to begin with.

I never thought I would have to consider how to teach my son to avoid police.  But there is no denying that recent events demonstrate race relations in this area of modern society have reversed 50 years, and we are now living in a dangerously polarized country. So here we are with our sweet son, standing at this intersection of racism, ableism, and disability. We are looking for breadcrumbs we can leave to aid him in preserving his own life  and the thought is frightening. So frightening that I can say the only thing that frightens me more is the rising number of autistic school children being arrested for school infractions and forced into the criminal justice system .

How do we teach him that the safest way to deal with law enforcement is to avoid engaging them at all?  Even if he needs help. Even if they seem kind and appear to understand he is unable to speak. Despite what he's been presented by well-meaning people who don't know what it means to be a Black man in America. Because if he meets a good cop one day, he may meet the one that hates him the next, and that could end his life. Too many others have died because they could not speak and were not provided with the means to respond when police ordered  them to do so.

The bullet-riddled windshield of Timothy Russell's car shows where some of the 137 bullets police fired at the car landed. (credit: Marvin Fong/The Plain Dealer)

One of my main goals for the remainder of my life is lowering the odds that my only son will die  by pushing our community to rethink what the role of law enforcement should be in our lives and to support efforts to remove law enforcement from inappropriate roles in the lives of autism families so we are able to  avoid police engagement as much as humanly possible. I am tired of watching our people die.

We are traumatized and tired of being helpless witnesses to the lives destroyed and lost in such encounters.  Freddie Gray,  Matthew Ajibade, Tario Anderson, Rekia Boyd, Tamir Rice, Aiyana Stanley-Jones. It is the list of the dead and injured that just keeps getting longer by the month while the criminal justice system keeps failing them and our entire race, first by allowing them to come to harm, second by allowing those who harmed them to not be made responsible for their actions, and third, by  blaming the victims in order to absolve the perpetrators. I continue to repeat that even someone who is suspected of committing a crime has the right to be safely arrested and tried by a jury of his peers. Police are never supposed to be executioners.

Knowing police officers who sully the uniform will not be held accountable for any wrongdoing, regardless of how much evidence of their guilt is apparent is soul destroying. We've been swallowing this bitter bill for my entire life. It is a spiritual struggle  to continue to defiantly declare one's right to exist and human right to humane treatment knowing this is true. Here is one of many examples of justice denied.

Cleveland police officer Michael Brelo mounted a car that 5 other police officers had riddled with bullets after "confusing the car backfiring with a gunshot"  and continued shooting down into the windshield of said car until the two already wounded victims, Malissa Williams and Timothy Russell, where dead. Officer Brelo was acquitted of any wrongdoing. 137 bullets were not, in a judge's opinion, excessive use of force.  If you believe that compliance of a traffic stop would have changed the conclusion of this encounter, then you are deceiving yourselves. If the moment the car backfired, the knee-jerk reaction was to shoot with impunity,  this act was driven by the presumption that Black suspects are dangerous criminals who should be shot. That is racial profiling. Which makes this a hate crime. This was never going to be an arrest. It was an execution.  Understand why we fear for our son. If you don't understand and don't act to help everyone fighting to change this deadly sequence of events, more will die.

This week the Supreme Court ruled in favor of San Francisco in the case of City and County of San Francisco v. Sheehan, overturning the decisions of all lower courts and placing all disabled people at risk. Specifically, they ruled that police who forcibly enter the premises and shoot a mental health patient have qualified immunity from litigation. This sets a legal precedent that weakens ADA protections despite the court's attempt to bypass the impact on ADA issue and enables further cases of excessive use of force when dealing with neurodivergent people in general and mental health consumers in particular.

I have already pointed out  here  that both Paul Childs and Stephon Watts were shot dead by police officers who had autism training, knew them, and had even helped them in the past. A police officer being familiar with your son's autism, knowing your son doesn't use verbal speech, being trained to approach and manage neurodivergent people doesn't protect them from being shot by those very police officers later on.

Jurors in the trial of the New Orleans police officers who shot multiple
victims including the Madison brothers inspecting Danziger bridge. Credit
Michael DeMocker NOLA Media

If I seem pessimistic about what is happening it is because even in cases where video evidence of wrongdoing supports witness accounts,  and even in cases where convictions are handed down, inevitably, as in the Supreme Court decision in San Francisco v Sheehan, justice eludes the victim. The conviction of the New Orleans police officers who shot among others 40-year-old autistic Ronald Madison and his brother Lonnie, who was trying to walk him over the bridge and out of New Orleans after Katrina, was overturned and they have now been granted a new trial. We all know these men will never see prison. Ronald Madison was a gentle person, loved by his family and neighbors. His brother refused to leave New Orleans without him and remained behind to help lead Ronald out after the storm because he didn't understand why he had to leave his home. It seems now that no one will ever answer for the innocent lives taken that day either.

If you ask my opinion of possible solutions to keep our autistic offspring of color safe by avoiding unnecessary engagement with law enforcement, I'll respond that I have a list. Here is part of that list

1. Retrain 911 operators to clearly distinguish the difference between a mental health crisis call and a law enforcement call. Do NOT use police officers as mental health support staff to transport MH consumers in crisis to help facilities. 

2. Train parents to properly request an ambulance and mental health crisis support; train loved ones and caregivers not to call the police unless a weapon is involved.

3. Remove the use of police and school resource officers (SROs) from the chain of school discipline and prohibit the profiling of disabled K12 students through files maintained by SROs, as they are neither qualified psychologists or psychiatrists.

4. Block school administration from calling the police to arrest students for school-related infractions and fine them if they do so. This holds them accountable for not providing staffing support for disabled students who require it.

5. Ensure that any incident involving the arrest of disabled students is automatically reviewed by that state's department of education's office of civil rights to assess the degree of violation of the student's civil rights and ensure the student is provided with properly trained classroom  support staff per IDEA .

6.  Establish grassroots mental health crisis support teams and  peer-run respite and crisis centers for MH consumers. This will increase respite for MH consumers and families, averting  crises where police might be called to homes or schools for interventions outside the scope of law enforcement                                                                                                                                                                                           .

I must continue my efforts to find a way to explain this all to my son and together we must ensure that even after we, his parents, are gone he knows how to survive as a nonspeaking  neurodivergent male of color in this increasingly corrosive world of hate.

God help us both.
-------------------------------
References:
Why Autism Training For Law Enforcement Does Not Work
http://theautismwars.blogspot.com/2014/08/why-autism-training-for-law-enforcement.html
What We Lose When Police Blame Victims For Their Own Deaths
 http://www.huffingtonpost.com/2015/05/15/police-shootings-victim-blaming_n_7284792.html
Blow to ADA of Supreme Court Decision in San Francisco v Sheehan
http://www.scotusblog.com/case-files/cases/city-and-county-of-san-francisco-california-v-sheehan/
Cleveland officer not guilty over deaths of two people shot at 137 times by police
https://www.theguardian.com/us-news/2015/may/23/cleveland-officer-not-guilty-shot-137-times-police
Reversal of Danziger Bridge convictions a 'bitter pill' for Hurricane Katrina survivors
http://www.nola.com/crime/index.ssf/2013/09/reversal_of_danziger_bridge_co.html

Neurodivergence and Representation: People Maps and Farewells II

What follows now is an adaptation of a Facebook note entitled "The Year In Hope", the last of the series I posted on my now unpublished personal activist's page, because I think it says more of what I wanted to say here and I have too much to say. This will be my Part II of a Three part post featuring Leah Kelley's Magic Card People Map, a great accessibility tool that she writes about in "Gathering at TASH and The Magic People Map." Those who have expressed an interest in having cards for themselves can ask Leah about them at http://30daysofautism.wordpress.com .

Before the debacle of Facebook's year recapping app forcing users to remember traumatic events of 2014, Facebook had their app for grabbing photos and recapping the timeline year active again. 2014 was a year I don't really wish to recap. The cost in lives of disabled children and the human rights

Ariane Zurcher, writer, speaker, artist,
activist, mother  and ally of Emma
Zurcher-Long. Ariane embodies the
community building autism parent by
tackling tough topics and giving the podium
to her daughter to speak out about
nonspeaking autism and representation

losses are just too high to celebrate. I will be on hiatus from activism for at least part of this year. So I'm continuing the
 people map of some of those dedicated folk I think should be recognized for selflessly standing up for what is right, and the stalwart parent allies who stand with them.

There is something very important that I am asking of everyone of you. whether your activism is all online or you are community organizing, marching in protests, or standing in congressional offices and trying to make things right, please don't think about political expediency, tactical advantage, career opportunity, or personal gain . Think about what you are fighting for.

There are turning points in activism where people must  choose between their own ascension, the message they are meant to convey in order to drive change to those they advocate for or represent, and political expediency. Sometimes the internet results in a dichotomous environment where these moments of moral truth are not just sharper and more immediate. They are painfully public.  Stand for the truth. Be brave. Even if you stand alone.

Adriana is a living example that highly
ethical, highly qualified care givers
can be allies against ableism in the truest sense.
With Adriana's dedicated support, Amy Sequenzia
 is able to balance a busy life of activism with
self care and engaging our community
fully.

 Without deconstruction of falsehood, change is not possible. Without criticism (even of those who

may be somewhat beneficial to causes but are flawed in a way that damages in the long run) there is no moving forward. If we are afraid to call people and organizations out when they display shortcomings that have the long term potential to harm progress towards justice and equality inclusive of all, then what we live in is  no longer a democracy and we are all lost.

My hope at the beginning of 2014 was that we all became braver people. We need that embodiment of true courage. For those of us who are parents, I hoped  we might demonstrate by example that the true meaning of parenting is finding our own way to accept allowing our children to grow up and age with the supports and accommodations needed to live autonomous lives. What I have seen is a year in which too many systems online and offline exist that perpetuate the gaslighting of parental attitudes about what disability is and what the struggles of parenting are. So many negative groups online have influenced the attitudes of parents and care providers that crimes against our children have  increased and a victim's disability is always used after horrible crimes to justify them. Hundreds of social media groups, web sites and blogs, present such horrifically negative views of what parenting and caring for neurodivergent loved ones means.  Readers who are already sleepless, clinically depressed and seeking solace instead find large populations of similarly clinically depressed parents escalating despondency. The danger in such groups is they foster behavioral and emotional contagion.

Need an example of emotional contagion? Remember that 2014 was the year of the disclosure for the infamous Facebook newsfeed psychology experiment? The researcher manipulated the newsfeeds of about 1 million users in an attempt to manipulate the emotional contagion of users and drive happiness or melancholy. People have a tendency to converge emotionally. The worst example of this is the fixation of Jillian McCabe, the mother threw her beautiful son London McCabe off an Oregon bridge, with that infamous scene in the horrible Autism Speaks movie "Autism Every Day". She wrote that she really identified with "Alison Tepper Singer who contemplated driving off a bridge with her autistic daughter Judie Singer."

 My hope is that whether I am an activist or not, our community takes on the critical task of deconstructing the emotional contagion of these negative content generating organizations and groups.We should be teaching everyone to recognize the signs of clinical parental depression, emergent dangerous thoughts,  unstable emotional states due to chronic sleep deprivation. We need to spot the red flags apparent in certain parent support groups and keep them from instigating harmful behavior towards disabled people.  I pray everyone understands this and if groups are anyone's forte, they begin a wider grassroots building of groups that make it clear that our present views on disability in general and autism in particular are being imposed upon us and what we need to do is begin with understanding how this ableism permeates our lives so we can first keep our mental health and then help attack the true causes of challenges to parenting neurodivergent children: special education systems that aren't working, disparities in what should be a multidisciplinary one-stop care models for meeting the

Emily Titon is an autistic activist for disability
rights, human rights, and social justice. Emily
sits on the boards of several disability rights
organizations and can just as easily be found
community organizing for transformative change
Her work on the exposure of the JRC is a typical
example of excellence in activism.

lifelong medical, dental and vision needs of disabled community members, and research and technology investments in adaptive supports and accommodations that will allow universal design to fulfill its true purpose:  to be inherently inclusive of accommodation by design for disabled people, the world's largest and most underserved minority.

We need to think about how each organization that claims to advocate for our children is actually doing so. How far will they go to help our children? Do they have significant leadership representation of people like our children, regardless of degree of apparent disability? Because only those people, intersected, of our children's races, religions, ethnicities, gender identities, and sexual orientations will understand what life is like for them now and be motivated to drive change for them. Unless you have lived as an autistic adult, how can you possibly know the gaps in adaptive communities, education, health care policies,  or the research needed to significantly improve the quality of life of autistic children when they become adults and age?  So we do need to give the podium to those who represent our children and allow them to tell us what those critical obstacles are. Before it is too late.

The case of Reginald Cornelius Latson is a crucible for representation beyond the disability nonprofit industrial complex. How have organizations who claim to be diverse disability rights advocacy organizations responded to four years of harm done to Neli?

Lei Wiley-Mysdke is the founding curator
of the Ed Wiley Autism Acceptance Lending Library
A community building effort to educate and
empower both the autism community and the
general public on neurodivergence 

Remember that Neli was able to move freely and without supervision in his community before this catastrophic encounter with police. This should have every organization and activist thinking that whatever went wrong, it was not wrong with a young man who had no prior criminal history, no record of aggression in school, and a diagnosis of Asperger's  given much later than other children, even those of color. So with that understanding, we must think of what was done to him that triggered crises and permanently damanged his mental well being rather than simply anthropomorphizing autism itself. Are organizations informing their members that the DOJ had already brought suit against the State of Virginia for their treatment of prisoners like Neli? How are your favorite organizations responding here? Did you only hear of the Latson case recently or not at all? That should tell you how they will treat your son or daughter should they fall afoul of the criminal justice system. Know who you are supporting before your fundraise, buy hair dye and run that 5k.

Back to that hope that people speak the truth without fear. Fear silences. Look at what is happening

Beth Ryan is a parent activist and example
of a transformative community organizer for
good  with healing efforts such as the online
 support group Parenting Autistic Children
 With Love And Acceptance,  

right now. A woman is shot, two police officers are shot, and this tragedy is being leveraged into a way of forcibly silencing

calls for police reform and judicial review of a whole host of incidents in which deadly force was misused and injustice was done. The wrongness of that is nauseating. Redress, transparency, and accountability are what make a democracy. Any attempt to smother criticism of public servants by the public who hire them is a red flag that all is not right.  My hope is that when a truth needs to be told we don't do what is done in special needs circles too much: that is we don't think of only our children's political advantages and abandon the chance to move forward as a community. One voice, regardless of how many connections it has and its individual fame, is small and ultimately dependent on those who follow it. Fame is a fickle mate. Aim to gather community and make it strong. If everyone in our community sees the emperor of ableism points at that narcissistic wrong and shouts "The emperor has no clothes!" even those who survive by kissing the emperor's arse can no longer deny the truth of its wrongness exposed. So don't hesitate. Make our world better. When you see a wrong say so. Don't do the math to calculate an advantage for yourselves.

Remember the KONY 2012 guy Jason Russell? He did what many autism advocates end up doing. He allowed the brief media spotlight and sudden intense popularity to make him more important than the cause he championed.  That led to disaster. Sadly it was never about him. It was about the invisible children. And he went from making a difference to making everyone forget about what he was fighting for. Don't be that

Dr. Anderson-Grace is an autistic academic,
educator, activist, and board member on disability
rights organization. One of the founders of NeuroQueer,
she represents a movement that commands representation
and unity in intersected populations within our
community such that even her brief involvement
in community results in transformative change.

person.

We are fighting for the human rights and civil rights of our loved ones. We are fighting for their equal representation in the society we live in. We are not looking for a segregated life on the fringes of society. We want our children to be respected as they are and given the tools they need to live in the society we live in. The minute we forget what our purpose is we are lost. I've seen it too much this year. Don't let the next victim be you.

My last hope and wish is that everyone work to build a new autism community. This can be done so simply and online. Know the numbers for all your local help agencies. When someone says they are hungry, have no shelter, need to an ear, give them crisis hotlines and food banks and shelter addresses and true help. Resources in the internet age are so easy to find but so few who are in need know about them. This is what I've always meant about pay it forward activism. If you help someone, tell them to remember and help another family or person. Whatever is in a person's ability to accomplish to help other members of our community, that person should try and accomplish it. It would make such a great difference in the lives of autistic children and adults. This is the antidote for the hundreds of groups out there on the web where parents trigger themselves with repeated stories of how they are suffering with their kids and how hopeless and without a future things are until someone decides it is okay to murder their own disabled children. The only genuine antidote is a truly united, diverse, inclusive community. I feel I have failed my part of the task to light a spark to build an online version of it. Maybe all of you can succeed where I have not. But you must begin with community concern beyond personal concern. Make sure your children and family are well. Balance your time so your mental health is in great shape. Then reach out and join with others to help make things better.

Peace


This is the end of Part II.  The final section, Part III  is next.

Mentions links etc.

Leah Kelley's Magic People Map Card info can be found above by mousing over Gathering at TASH and the Magic People Map. Inquiries about acquiring cards for your event can be obtained by commenting on her blog 30 Days of Autism:  
http://30daysofautism.wordpress.com/

The Autism Parenting Positivity Group Parenting Autistic Children with Love and Acceptance can be found here:
 https://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance?fref=nf

Ariane Zurcher and Emma Zurcher-Long's joint blog, and ongoing chronicle of autism positivity in parenting and autistic self advocacy for autistic tweens and teens who use AAC to communicate can be found here: http://emmashopebook.com/

Dr. Ibby Anderson -Grace's blog Tiny Grace Notes - Ask an Autistic, for parents with questions for autistic adults who are also professionals, academics, and topic experts can be found here:
http://tinygracenotes.blogspot.com/

The Letters to Autistic Kids Project, founded by Dr. Ibby Grace and Leah Kelley, can be found here: http://toautistickids.blogspot.com/ 

Lei Wiley-Mysdke is the curating founder of Ed Wiley Autism Acceptance Lending Library, for information:  https://www.facebook.com/EdWileyAutismAcceptance?pnref=lhc

Questions for autistic activist Amy Sequenzia and Adriana about building long term friendships with mutual respect between disabled activists and care providers, supported typing, and balancing the livea of active disabled people with complex health management can be addressed to Amy Sequenzia and Adriana through Amy's website:  http://nonspeakingautisticspeaking.blogspot.com/

The further adventures in activism of Emily Titon can be followed by following her on Facebook or twitter @imnoteamplayer, or Googling her. Here she is in  a Boston Globe article with Cheryl McCollins, the mother of JRC torture victim Andre McCollins.
http://c.o0bg.com/rf/image_585w/Boston/2011-2020/2012/05/09/BostonGlobe.com/Metro/Images/10rotenberg_photo.jpg

Autism, Competence, Adding Kemal to Mustafa

A very long time ago, a mathematics teacher, Captain Üsküplü Mustafa Efendi gave his best pupil, a boy named Mustafa, the additional name Kemal, a name with a depth of meaning that I will simplify and say means maturity. This Mustafa went on to be given the name Ataturk, meaning "father of the Turks".  When our son was born, we named him Mustafa. We did not know then he was neurodivergent. We felt, if he could carry the name well, and became the young man we hoped he would be, we would add the name, Kemal. Because maturity is not born. It is earned.

I have said before that my son Mustafa is a heroic figure. Born in a day and age when having a name like Mustafa makes you the target of instant enmity, he orchestrates his life in rich, ripe, silences, punctuated by occasional gifts of a word sprinkled like salt and pepper over good soup. His hands flap as he conducts the symphony of the day that he has selected on his computer and he stands to do so. He is free to be himself at home, and because he is imposed upon so much outside our home, certain spaces, like his bedroom, are his to control except of course for cleaning them, which is a joint effort. 

The most heroic scenes in Mustafa's life do not take place in public. They aren't filmed and uploaded for viral video potential. No, those episodes happen quietly, at unexpected moments. This is the month when you'll hear the worst things about my son and his peers. He is, after all, the most apparently autistic young man. He cannot hide his neurology. So I wanted to share one of those moments because something good needs to be said about my boy right now before the landslide of negativity and fear buries us.

I have been ill, and combined with fatigue, it has made it rough to go through my scheduled days with Mustafa. He senses this and has begun doing small things to compensate for the slowness in my movements and the times when I must sit and wait. I had reached a moment when pain shot through me and I sat down with the shock of it. Then Mustafa did something surprising. He sat next to me a put his arm around my shoulders. He sat with me until the pain passed. He pushed me sideways indicating I should lay down. When his father, concerned at the sudden quiet found us Mustafa had covered me with a blanket, returned to his room, and was sitting back down at his computer, continuing to go about his business as if I was with him. He would occasionally stand by my bedroom door, checking on me.  He did not request any assistance from his father. It stunned me. His father assumed I had wrapped myself in the blankets and fallen asleep. I had not. Mustafa simply did for me what I do for him. He realized I needed to rest.  He took care of his mother.

In his life, with its professional presumption of incompetence, these moments are heroic because they fly in the face of assessments that insist data driven observation knows who he is and what he is capable of feeling and doing. His range of knowledge, capacity for empathy, or what he might do if allowed to make his own decisions to the degree he can are all glimmering in these moments of greatness.  Mustafa is eleven. What he did for me is beyond the scope of what many eleven-year-old boys today would stop to assess and do. 

A few years ago I spoke to my husband about the idea that should Mustafa master communication we might add the name Kemal to his name. I don't think we need to do that now. He has matured without the name. Mustafa kemale ermek yolunda. Meaning Mustafa is on the road to maturity.  Happy Autism Acceptance Month my son.  Thank you for taking care of me.

Love,

Mom

Written Testimony Before the U.S. House Committee on Oversight & Government Reform

U.S. HouseCommittee on Oversight & Government Reform

TESTIMONY OF MRS. KERIMA CEVIK, MOTHER OF MUSTAFA NURI CEVIK

Regarding  The Federal Response To Rising Rates ofAutism

November 30, 2012

Main Concerns:

• Re-aligning funding to remove the racial, ethnic, gender and income disparities in access to accurate diagnosis, lifespan supports and services
•  Distributing research funding to increase research in assistive technology supports, quality of service provision, and directly addressing the needs of Autistic individuals and care providing families throughout their lifespan
• The importance of the Olmstead decision for my son and those like him
• Medicaid will be important to my son; continued federal governance is needed

Thank you, Chairman Issa, Ranking Member Cummings and esteemed Members of the Committee, for allowing me to share my family’s concerns and Autism experiences with you.

My name is Kerima Cevik.  I am a resident of Prince George’s County, Maryland and mother to Mustafa Cevik, affectionately known as Mumu, a wonderful 10-year-old boy with multiple intellectual disabilities. When our son was four, we took him to the Kennedy Krieger Institute for evaluation. After three years and four pediatricians telling us “let’s wait and see, maybe he’ll speak” our son was given a grim diagnosis that included the labels “low functioning” and “nonverbal Autism”.  We were told that our son would never speak; he’d never improve, that he would always need help with all his basic needs.  We were also told there was nothing we could do to improve our son’s situation. Then we were left to absorb this harsh reality about our child.

Since his diagnosis, we have seen our boy repeatedly surprise the experts. We videotaped our child doing things we were told he did not have the cognition to do. The team at Kennedy Krieger realized our son was capable of learning and retaining what he learned. He was in fact, not as he appeared. We were told we were at the bottom of the developmental mountain with our son. But he showed them differently. What we’ve learned about our son is that he has the ability to achieve whatever he goal he sets for himself despite the severity of his disabilities. And each developmental roadblock he passes drives us to fight that much harder for his right to respect, acceptance, literacy, and his right to gain the intensive supports he needs to help him be as independent as possible throughout his lifespan.

Our son is very brave. He has survived abuse and neglect in school. He steps outside each day to a world where he is gaped at and made the object of ridicule. I am a woman of color, what our government has labeled “Black of Hispanic origin”. So I know what discrimination is. I cannot explain why this hate exists to my son. He senses it however. He faces racism and ableism patient and unfazed, because he knows he is loved and accepted at home. He has made great strides despite not being allowed to benefit from the treatments and therapies that are supposed to be available at his school and in his community.

My son’s story is not unusual for special needs children in families with racial and ethnic differences. So I was disappointed when I heard a medical professional testifying that late diagnosis and disparity of care were the result of episodic medical visits to pediatricians by minority families.  Racial bias in health care and education is well known and I expected that to be addressed by witnesses at this hearing and it was not. I am respectfully requesting the committee invite witnesses from a broad demographic, who might be able to give testimony about the experience of racial, ethnic, and gender differences and how this directly impacts supports and services for Autistic individuals who are also minorities or women.

It angered me to hear some of the testimony at the hearing because our son is our pride and joy. He is an amazing human being. His strength of will alone is humbling. Is it easy to not work outside the home in order to teach and care for him? It is a great deal easier than what my son deals with each day of his existence. And yet he gets up and jumps into life with all the joy the rest of us may sometimes lack. He deserves better than being called a burden.  He is not a “damaged child”. Autism did not take our son away; our son is Autistic and is learning to meet and master his challenges. I cannot get up in the morning and remove my dark skin; I expect the world to accept me as I am, because my skin looks good on me. While the devastating historical attacks on the self-image of dark skinned people have created a market for skin-lightening treatments, “curing” my dark skin is not the answer. Nor can my son’s brain be removed from his body; it is part of who he is. The answer then, is to accept him as he is, and help him meet the challenges his neurology might present him. The Autistic ability to persevere is giving him the will to work to master skills many of us take for granted. And if funding is balanced and distributed in such a way that my son and all those waiting for services are given the supports and accommodation needed to be fully contributing members of society they will not disappoint. Our son’s continuing story is proof that motivation, will, and courage are the ingredients of successful people.

Funding for Services and Supports

Research is a fine thing and I support it; but our son and his peers will not benefit from any research currently being done because this research is not in areas such as better learning approaches, life skill acquisition, Autism specific healthcare and more efficient and affordable assistive technology. There is very little research on the health profiles of individuals on the Autism spectrum. And what caused my son’s brain to be wired differently and whose fault it may be is probably the least urgent of the questions he needs answered. Autism’s primary challenge is communication, and yet no research dollars are invested in assistive technology and education strategies to maximize literacy in nonspeaking Autistics. I fought to get a single assistive technology evaluation and this evaluation resulted in the professional opinion that our son could use an iPad and TouchChat App as an affordable speech device. He is learning to use it now. This single event could change the entire quality of our son’s life. We must somehow afford a second iPad device and the software to have on hand as a backup communication device should his present device be damaged. Families are borrowing money, fundraising, trying to do anything they can to get the equipment they need for their loved ones to communicate. Imagine how we feel when we are told that funding for iPads and iPod as AAC devices is not approved but funding for a $10,000 dynavox device and the requisite supports and equipment needed to make using it feasible is. If the funding spent on awareness campaigns was spent on iPads the impact on the %25 of the Autistic population that needs communication support and literacy would be life changing. Where funding goes and how it is used in our community concerns us.

Because our son is learning to use an iPad speech device, someday he might be able to testify about his needs directly before your committee. Many older children and adults on the Autism spectrum who do not have verbal speech are erroneously labeled “low functioning” and thought to be incapable of learning. We were told our son would always have the mental age of a 6 month old. His life is changing because we ceased listening to what he could not do and began focusing on what he could.  Shouldn’t more than 2% of funding go to helping our children and Adults on the spectrum become more independent? Much of the aggression associated with some Autistic nonspeaking children and Adults resolves itself when these individuals are given a means to communicate. Yet research is lacking on Autism and literacy.

The Olmstead Decision

When our son was first diagnosed, we were told that at some near future date, we would be placing him in an institution. If you are a parent, probably one of the most horrific things you could be told is that it might be a good idea to institutionalize your toddler. I am so glad we did not heed that advice but instead sought support from the Kennedy Krieger Institute and other resources to help our son. He has made greater improvement at home and in his community. While many of his peers are on medications to reduce anxiety and regulate sleep, he is medication free and is receiving professional help to manage the overwhelming sensory input he deals with daily without medication. Unfortunately life in institutions often came with medication used for chemical restraint, and for many of developmentally disabled children heartbreaking abuse and neglect. Funding for community-based care allows families like ours to be educated care providers and our children to live in whatever degree of independence they can. Whenever a vulnerable population is made to be dependent on an institutional style care setting the risk rises for abuse. The Olmstead decision has saved the lives of hundreds of disabled children and adults and is creating environments that allow us to see our children in our schools and communities and not shut away and harmed. The benefit of my son being out and about in his wheelchair is that his is accepted in his community. Our son is an active part of his community everywhere typical children are. The only way to end the maltreatment of developmentally disabled children and adults is to end segregating them. The idea of our son, after having come so far, being forced to live in prison-like conditions because he is disabled is horrific to me. The federal role in assuring that our son and all those like him are not imprisoned in the guise of providing housing supports because they are in the profoundly disabled category is critical.

A final concern about Medicaid Funding

Although our son is not currently a Medicaid recipient, his degree of disability dictates that at some future date he will be. Many of his disabled peers are able to have the critical medical support services they need through Medicaid. Please do not reduce the role of the Federal government in Medicaid services.

Thank you for your time and consideration.

About the Autism Dialogues

Welcome to my blog. It is new. I started it this summer. I am not a writer. My grammar is atrocious.  But I am representative of a demographic of parents who are underrepresented in the autism conversation. I wanted to try and reflect that feeling of being outside of discourse and public policy. I also want to infuse a kind of hope. Hope that, in the long run,  painful as such dialogs may be, they have the potential to change the quality of life for both our children and the only adults who truly understand what it means to be autistic.

Shannon Des Roches Rosa moderated a series of dialogs on The Thinking Person's Guide to Autism. But as I read each day's dialog, I felt outside the conversation. No one appeared to speak from the perspective of my community of parents.

Now I've had a change of heart. I think Kristina Chew and Paula Durbin-Westby wrote eloquently from the perspective of parents in a way other parents in my situation can understand. I am someone who has gone out in search of autistic adults who are nonspeaking like my son, in the hopes that listening to them might give me an insight into how to best help my son. I am also quite painfully familiar with the uglier side of discrimination both as a matter of daily life and as my son’s parent and advocate.

My son will be an adult in the blink of an eye. So I must try to understand self-advocates as much as I can and I hope my son is someday able to advocate for himself. If he can’t do so, I must continue to be his voice. My daughter is a medical interpreter. When you interpret you are the voice of another person. You don’t say what you want or what you think is best for the patient. You translate verbatim as much as linguistically possible. That is what my goal is should he not be able to self-advocate. To be an interpreter for my son.

At some point everyone in this community must grasp that we are part of an effort to gain civil rights for our autistic children. To parents like me, who are not autistic, don't give up. Keep reading. I'm trying too. I'm determined to cross that divide with you.

Two Autism Stories

Several years ago, I attended a meeting of parents and care providers to discuss the lack of county services available for their loved ones on the autism spectrum. At the meeting, an African American medical professional told me something that still gives me pause: "Autism is a disability for the rich," she said. “Only the wealthy can afford the costs of the intensive early interventions we as parents need to help our children succeed." She continued, “As African Americans, we are disproportionately caring for our children on the spectrum as single parents, with limited means, and are dependent on institutions like our public schools to give whatever supports they can."

As I continue my three year fight for appropriate supports for my own child, I ask myself each day, “Was my acquaintance correct? No matter how diligently I try, no matter the effort I make, will I be unable to provide my own child with the help he needs because of financial and racial disparities?”

Two stories show this disparity of care, resources, and options in a way that leaves me with heartbreaking concern. A Journey into the World of Autism is a series of photographs with commentary, about an against all odds, full on battle for the dignity and civil rights of a 14 year old African American boy, Daniel Tuttle Jr. Daniel was given a diagnosis of autism when he was 2 years old. He never received early interventions or any support services. His battle for services is still being fought by a woman who is not his mother. She was his first daycare provider as an infant; when she heard Daniel's mother was out of work and overwhelmed trying to manage his care, she did not hesitate to go through the process of becoming his care provider.

Autism Lives Daily in Our House briefly outlines the story of Jack Drinkwine, a white child diagnosed with autism who is receiving intensive interventions and supports. He has teams of medical and educational professionals working with him to improve his ability to navigate his world. Jack's mother, a university professor, discusses the combination of therapies and supports paid for by a combination of funding that Daniel Tuttle's care provider could never hope to achieve.
Daniels is homeschooled and sent to a speech therapist. Daniel's only other therapy, administered by his care provider, is a GFCF diet and the basic set of the shoebox task system, the foundational exercises in the TEACCH method. Daniel's care provider continues to try to place him in a safe educational environment where he is able to adapt to the classroom and receive at least minimal services and supports. Meanwhile, Professor Drinkwine advises other parents to acquire the intensive interventions for their children that she has, never considering that many parents and care providers do not have the resources available to them that a family with two working parents- a university professor and a high ranking military officer- does.

Is this disparity of service placing African American children on the spectrum at risk for more confrontations with aversive behavioral management techniques, fewer educational and therapeutic supports and a greater risk for either institutional care or catastrophic encounters with the criminal justice system as adults? It is a chilling thought for me as I look at my dark skin and my deeply autistic son.


Please read both articles and let me know what you think:

A Journey Into The World of Autism
Autism Lives Daily in Our House

More on Daniel Tuttle Jr. from DC & NYC Photographer Eli Meir Kaplan:
Against the Odds