Saturday, February 25, 2017

Justice for the Dietrich, Idaho Assault Victim, Neurodivergent and Black

Mr. and Mrs. McDaniel with four of their 20 adopted children
©Washington Post/Getty Images
I'm going to mention a violent rape. I will try to be as brief as possible but please don't read on if this topic will upset you. 

I learned today that I can be disgusted, angry, and horrified all at once.

The victim, 18, psychiatric disability community member, one of 20 adoptees to the McDaniel family whose parents are white and live in an area with a predominantly white school, was abused by his own football teammates over a period of months and no one in the school administration or coaching staff acted to stop it. the victim was eventually lured into a locker room by three assailants where his teammates beat him and raped him violently with a coat hanger. 

The McDaniels have an additional five children born to them. I'm not certain how they are able to manage the safety of disabled children of color in a family of 25 children. But there is something more urgent here and that is that Judge Randy Stoker handed down a sentence of 3 years probation to defendant John Howard the main perpetrator of the assault, at the behest of Prosecutor Hemmer. The prosecutor explained to the Judge that the assault was not a rape, hate crime, or any category of sexual assault, but in face a case of bullying, and let the rapist off without jail time. Of course, because Howard was allowed to plead to a charge that was not rape or a hate crime, he will not be a registered sex offender and will be free to assault other African American victims. Co-defendant Tanner Ward's charge of forcible penetration with a foreign object was reduced to a lesser charge and he is being tried as a juvenile. The court and prosecutor also decided Wards actions were not a hate crime. 

When is the disability community going to fight for justice for the Black disabled victims of ableist hate crimes? Are they not aggressively pursuing this because these victims are not white? This is a very sore point for me. I'm tired of seeing this happen time and again with victimized disabled youth of color.

Judge Stoker should be removed from the bench. I will be including links to the petitions calling for his removal at the end of this blog. Moreover, Prosecutor Hemmer, (who orchestrated the plea deals and reduction of charges, used the victim's disability as justification for why the final horrific assault should not be classified as a sexual assault or a hate crime) should be held accountable. David Perry explains this very clearly in his excellent article on the Dietrich assault in Pacific Standard which you can read here.

The victim never had a chance. He is the victim but being both disabled and Black in an all-white town with parents who cannot teach him about racism because they are white and do not experience it means he was unprepared and also emotionally violated by the judicial system, the school where he should have been safe, and the football team coaching staff who encouraged this abuse. According to the Superintendent of the schools' disclosure of the district's investigation, one teammate tried to stop the attack but was threaten with the same treatment if he interfered. No other classmates fought for him. This is what it means to be Black and disabled in America.

The question is, are there people in the wider world who believe that justice is the entitlement and human right of every citizen in every nation on this planet? Are there people who believe hate crimes are hate crimes when the victim is Black and disabled? 

If you are one of these good people,  please help me step up now and make this right. Because this is an abomination. And if this judgment stands, all disabled children could be next because disabled teens are easy targets and we are living in a time of inflated hate. 

If those families with white disabled loved ones believe that because their children aren't Black, they won't  be targeted next, they are in for a very unpleasant surprise. Once people know they can abuse disabled youth without serious repercussions they will escalate and not stop at Black disabled youth. Our children are just the first targets. They are never the last.

Speak out! Protest this verdict. Justice for the Dietrich, Idaho assault victim! Or sit silently now and wait until your loved ones are the newest targets and it is too late to fight.

My son is nonverbal. Had he been victimized in this sustained and escalated fashion, he could not have told us or defended himself. This is why I am so outraged and so horrified that months of sustained harm get a slap on the wrist. The victim of this sustained series of hate crimes will need therapy for the rest of his life. 

We must act to make this right or we have no purpose in advocacy nor can we call ourselves activists against violence to disabled youth. 

Resources and Calls To Action
(with thanks to some incredible activists for research, updates, and support)

The Terrifying Story of The Dietrich, Idaho Assault Victim

How a Prosecutor Decided That an Attack on a Disabled Black Kid Was Just Bullying
David Perry for Pacific Standard:

School Superintendent Investigation Report of Details in the Case Heavily Redacted by School District legal counsel:

John R.K. Howard was not charged with a hate for sex crime"

Co-defendant Tanner Ward not facing felony charges and case to be tried in juvenile court

Attorneys for McDaniel family petitioning court for unredacted documents. Willing to allow them in the public record to expose cover-up and actions of defendants in their civil case against School district:

Petitions about the McDaniel hate crimes in Dietrich, Idaho to sign and share: Petition: IDAHO JUDICIAL COUNCIL: Remove Judge Randy Stoker from the bench for decision in John Howard rape case Petition to DOJ:

For further public action:

Please direct public comment about this unfathomable injustice to:

Office of the Attorney General Lawrence Wasden
700 W. Jefferson Street
P.O. Box 83720
Boise, ID 83720-0010
Phone (208) 334-2400
Fax (208) 854-8071

Comments can also be submitted on  the official website here:

What else can you do?
Consider sending an email expressing your concern about the miscarriage of justice in this adjudication of this case. You can do so here:

Thursday, January 5, 2017

On Race and Hate Crimes Against Disabled Victims

Melissa Stoddard, light brown skinned natural brown haired
biracial autistic holds a mirror and smiles wearing a pink
two-toned sweater and a rainbow clown wig at McIver
Education Center, Greensboro, NC photo credit Herald Tribune
Melissa Stoddard, pictured on the left, is one of the murder victims who I keep writing about because I will always feel that she was ignored in the worst way by the Autism community after her murder. She is, to quote the Herald Tribune, “The Girl Who No One Saved.” A young and vibrant 11-year-old autistic girl, she was slowly starved, tortured, strapped to a board and left in an empty pool in her family’s backyard at all hours until she died.

I will always be furious about the fact that Melissa was happy with her mother and her school in Greensboro, North Carolina, and that it was the very stepmother who abused and murdered her who called Child Protective Services on her intellectually disabled brother, accusing him of molesting Melissa. I believe the acts of Melissa’s father and stepmother witnessed and related by Melissa’s white stepbrothers should have been adjudicated as hate crimes. The Autism community that continues to roar in outrage at the commuting of Dorothy Spourdalakis' sentence for the brutal stabbing murder of her nonspeaking autistic son Alex simply did not care enough to pursue this.

Could this be because she was not white but the perpetrators of her torture and murder were?

The abuse, neglect, and murder of Melissa Stoddard are sadder in that everyone in Florida, regardless of political affiliation or approach to disability, was equally outraged by her torture and murder. Only the Autism community casts Melissa aside, with the exception of listing her name among the countless numbers of disabled people murdered by parents.

Today, I'm reading in the news that there was a violent assault on a disabled white adult male presenting victim named in some news sources as Austin Hilbourn broadcast on Facebook live. The young woman who live broadcasted it and the suspects responsible have been arrested. The victim was taken to the hospital for treatment. The press seems to be spending very little time wondering about the state of mental and physical health of the victim. I have not seen the video of the assault nor read more than the barest details. But here is why I'm bringing this up today. Those arrested were charged with a hate crime. Should they have been?

Well, of course, they should have been charged with a hate crime! Yes, this is a hate crime against a disabled young man done because of his disability and should be adjudicated as such. Yes, it was made worse by the anti-Trump slurs but those slurs were added to justify the crimes committed and are not the hate crime in and of themselves and this is critically important. This is not about Trump. This is violence against disabled people.

Now is where I state emphatically, no, not every African-American teen in America is culpable for this crime. No, African-American youth is no more dangerous, hate-filled, violent or cruel targeting vulnerable victims than white American youth. We hear about horrific crimes of this nature against disabled youth every month. Many crimes go unreported because prosecutors won't pursue them or parents don't press charges against the criminals responsible. Let me digress a minute and give an example of another horrific crime against a disabled teen where the perpetrators also used a current event to draw attention to their act of violence and broadcast their crime on the Internet.

Remember the horrific ice bucket challenge assault on an autistic teen in Ohio? The perpetrators also filmed and broadcasted their horrible assault. The victim's parents insisted on allowing the broadcast to remain on the Internet, and their solution to this crime against their disabled son, evidence of their own ignorance and ableism, was to endanger more autistics instead of punishing the guilty by insisting the criminals perpetrating the assault be given community service to autistic people instead of prison time . Innocent autistic youth were placed at further risk of emotional harm from these individuals. The wrongheaded idea autism parents have that somehow those who visit physical harm on their children should get to know them in order to understand and possibly befriend them upsets me deeply. Our offspring are not hopeless charity cases so desperate for friendship that those who abuse them should be allowed to continue doing so.

The ice bucket challenge assault, like a similar case of months of torture to an autistic teen filmed by two girls who convinced him to go along by claiming they were his girlfriends, should have been adjudicated as a hate crime against a disabled person. But those who perpetrated the crime and filmed it where white, thus the language used for the assault was not assault but "prank gone wrong" and those who committed this crime were not labeled criminals but called bullies who just needed 'autism awareness.' Autistic youth was presented to the public as a pitiable group, to be looked down upon. This is a variety of victim-blaming as this young man's disability was made an excuse for the criminal actions of his attackers.

The demand for hate crime status in the wake of the Alex Spourdalakis murder presents a new set of ethical issues to our community. If the equally gruesome murders and assaults of countless nonwhite disabled victims like Gilberto Powell and Melissa Stoddard prompted no effort or demand for hate crime classification. and therefore were not adjudicated as hate crimes, then the outcry at this point for hate crime status is again, a matter of the racial makeup of the victims and the perpetrators rather than the severity of the crime. We need to define what we as disability rights activists will do when a crime against any disabled victim, white or nonwhite, should be adjudicated as a hate crime but is not. We must be consistent with our standards for calling crimes against disabled victims hate crimes regardless of the race of the victim or the race and position in society of the perpetrators.

Violence against every minority has increased in the aftermath of Trump's election. It is imperative for everyone in the disabled community to seek safety in new, united, ways not sought after before. Everyone caught up in this polarized glorification of hatred will seek to harm those who appear to be the most vulnerable targets.

To the African American perpetrators of this hate crime: hatred is not the way to hold the President-elect or the racist white supremacists' organizations who backed him accountable for anything. What you have done to this innocent young man is that much more heinous because it harms him as an individual and harms the disabled communities and the African American community. This horrific thing that all of you did and broadcast can now be used to justify all the excessive use of force by police against Black communities across our nation. It can be the excuse for Trump to do any manner of things to us, all from your ignorant act of naked hatred perpetrated on an innocent victim. You may wish to harm yourselves, and that is your choice, but you have no right to harm so many others.

In our rush to declare these acts of violence hate crimes, let us ensure that we are shouting with equal vigor for every member of our disabled community.

Remember, do not allow current racial polarization to hijack the case here. This is an act of violence against a disabled person, despite all the libelous attempts to brand it outlandish things like a Black Lives Matter kidnapping. More crimes like this should be tried as hate crimes, regardless of the race of the perpetrators, not only when the perpetrators are a racial minority shouting anti-Trump slurs.

Melissa Stoddard and Gilberto Powell deserve that and more, they deserve our continued remembrance and support. They don't get it. Let's hope that changes.


Further Reading:
On Melissa Stoddard:
    As an Invisible Autistic Filicide victim:
    Comprehensive story of her life/death with timeline in the Herald Tribune
    Autistic Hoya on Melissa:
On the Hate Crime against Austin Hilbourn, a young disabled man in Chicago
     CNN coverage of the assault along with explanation of what constitutes a hate crime
The latest on the Murder of Alex Spourdalakis
     Emily Willingham, Ph.D. On Alex Spourdalakis /why disability is not an excuse for murder
Examples of other Assaults on Disabled Youth By White Peers Who knew them
      On the Ice Bucket Challenge Assault:
     Autistic teen boy tortured by two white girls who filmed their abuse
     White high school football players in Idaho charged with sexually assaulting black, disabled teammate with a coat hanger
On the Checkered Career of the Cop who Assaulted Gilberto Powell
Miami-Dade cop Fernando Villa had problems long before his DUI

Saturday, October 15, 2016

Oh To Be Young, Black, And Autistic: The Ignored Murder of Charnice Milton

Image of Charnice Milton, a young African American woman
in braids pulled back neatly with a white tie, a gold loop earring,
wire-rimmed glasses and a white blouse. She is smiling. credit
Black Christian News.
It's been well over a year, and I've blasted social media about this twice, but no autism organization has bothered to even mention it. So I'm going to write once more about the murder of Charnice Milton because Charnice Milton was young, Black, talented, and Autistic.

Charnice was the victim of a drive-by shooting in the neighborhood she dedicated herself to getting voices heard about. She was used as a human shield in a violent exchange that had nothing to do with her. Southeast D.C. still mourns her. The police are asking the pubic's help in finding her murderer.

Her parents discussed her diagnosis, which at that time was labeled Aspergers, and how no one ever thought she'd complete school, much less end up with a masters degree in journalism. Like some African American parents, they spent the next months vacillating between the truth of admitting she was autistic and saying she "had Asperger's like symptoms" when the love for her work and for her by her peers and community overflowed such that her murder became the subject of articles in The Washington Post and The New Yorker.  They rethought their initial admissions and made efforts to mute her autism from the story of her life rather than celebrate the brilliance of her short career as a disabled journalist. But their initial admissions are there in interviews for local television stations.

Meanwhile, all autism organizations remained silent on her murder. There were neither statements of loss nor demands for justice. No hashtags flooded Twitter. The first anniversary of her murder was on May 27th. I was in the hospital and could not attend her vigil. To my knowledge, no representative of any autistic organization did either.

I used to write one of these blog posts each time a Black autistic adult or child was murdered simply to force attention on these events and make the deaths of autistic people of color matter as much as white autistic children. The hypocrisy of being an autism organization and ignoring the murders of Black autistic people but claiming to speak for autistic people of color is something I've hammered on for 5 years.

I shouldn't have to .

Remember Charnice Milton. Make her matter. Her parents, with their intentions of wanting her remembered for her journalism and not her neurodivergence view her success as being in spite of her neurology. They are not grasping how the neurology that disabled her also shaped her drive and her detailed approach  to becoming essentially  an embedded journalist in the most dangerous community in Washington D.C. They are doing her a great disservice by their indecisive attitude towards including her neurology as part of what made her a meticulous and excellent journalist.

But her autism community is doing worse. Because they are acting as if she is not a part of us, as if she doesn't exist at all, and her life and death are of less import than a white autistic person.

When every autistic life and death has equal merit, my need to write these heartbreaking posts will end. Until then, #JusticeforCharniceMilton, Young, Black, Talented, and Autistic. You were appreciated and I hope this small effort will ensure you are not forgotten by the disability rights community.



The Death of a Young Black Journalist

The Washington Post Local:

The New Yorker:

NBC Washington:

Wednesday, May 18, 2016

How Not To Endorse An Anthology

Tom Wiggins aka Thomas Greene Bethune, holding a copy of his composition
Rain Storm Photo By W. L. Germon of Philadelphia - tennis*elbow,
 Public Domain,
A historic event in the timeline of the history of autism and disability rights activism is about to happen. The Autism Women's Network, probably the most diverse nonprofit organization in autism rights advocacy, is about to publish an anthology consisting entirely of nonwhite voices. "The Weight Of Our Dreams" was edited by three powerful activists of color, Lydia X. Z. Brown, E. Ashkenazy, and Morénike Giwa Onaiwu. This may be the only anthology actually allowing the voices of autistic people of color to speak without validation or qualification of parents or professionals. This will be groundbreaking. 

I was therefore shattered when I read a piece by NeuroTribes author Steve Silberman giving the book a brief mention in a recent article entitled "The Invisibility of Black Autism." Why would a white best-selling author of a history of autism and neurodiversity's acknowledgment of an anthology on race and autism upset me? I wrote about the erasure of Black autistics from histories of autism, including Mr. Silberman's in the article "Autistic While Black: The Erasure of Blacks From Histories of Autism."

Since the message has not been understood, here's what is wrong with Mr. Silberman's article, and it is a primer about how not to write about race and autism.

1. Don't be a hypocrite.  If a white author excludes any mention of Black autistic historical figures in a comprehensive history of autism, he has no place writing about the topic as if he is an authority on it. Mr. Silberman excludes Black autistics from his history of autism, where Blacks, in general, are only mentioned to give scenery and import to the heroes of his book. He also applies the n-word in his book unnecessarily, as the use of the expletive adds no value to the narrative at all. Imagine my surprise when suddenly he's writing about the trials and tribulations of Black autistics.

2. Don't conflate the issue by choosing a misleading topic title. "The Invisibility of Black Autism" is a nod to a CNN article by African American Autistic music producer Mike Buckholtz you can read about here. The title conflates invisibility and what is actually happening which is erasure. Articles like "The Invisibility of Black Autism" actually contribute to erasure.  Black autistics are visible; the issue is how they are impacted by disparities in health care support, misdiagnoses based on presumptions founded in structural racism, disparities in educational and ADA supports and services, and research that excludes and abuses them (I disagree with Mr. Silberman that the exclusion of single parents is a factor, this is an example of how a generally known statistic about a socio-economic group within a racial minority is both overgeneralized and used to presume causation of factors that may correlate but not be relevant to the issues discussed). Invisibility implies Black autistics are not visible; erasure makes it clear that Black autistic representation, Black autistic voices, and Black autistic people are having their efforts appropriated, used for the benefit of others, and as a result wiped away.

3. Don't write if you don't know your topic. When an uninformed white author tries to write about race and disparities in research, inevitably the history of the use of the Black body as a human lab rat is excluded from the narrative, and cultural stereotypes like the single Black parent phenomenon and cultural limitations within our community are pursued as a cause for lack of accurate data. Black families are leery of studies with just cause, and when trust is given to researchers the consequences continue to be devastating, as recent events like the disastrous Kennedy Krieger lead paint study lawsuits continuing in Baltimore have made clear. Never discussed are infrastructure planning decisions resulting in toxic environments for disproportionately Black and Brown communities, and how such environments impact disability and Black and Brown attitudes about research as well. See the latest civil rights lawsuit filed against the state of Maryland about the building of an additional power plant in Brandywine, MD bringing the total of plants in one community that is 75 percent Black to 5. The impact of environmental injustice on disability and race would not be addressed by an author who would fail to realize its disproportionate impact on our community.

4. Don't plug an Autism Speaks supporting site in the same article you plug the anthology of three powerful autistic fem activists of color fighting for disability rights of intersected people.  The Color of Autism site promotes Autism Speaks' 100-day kit and the medical model philosophy of autism. While their documentary attempt to give voice to the need for services is admirable, it uses the autistic youth in the film in the same manner they are used in any Autism Speaks PSA and this is infantilizing, appropriative of their voices, and diminishes them. Mr. Silberman appears to be attempting to placate potential audiences for his book,  and straddling a fence to gain the good graces of parents rather than supporting a great anthology by disability rights activists who are experts on the topic. Numerous sites on disability and race exist, along with blogs from disabled disability rights activists of color, parent allies, and academics who write on the topic of disability rights and critical race studies. I can therefore only conclude that the choice to mention The Color of Autism was clearly meant to promote Autism Speaks supporting parents of color.

5. Don't begin an article with a slave trope presentation of an important Black autistic historical figure and force readers to read a degrading portrait of him in a racist oppressor's account of a man who spoke through his musical compositions, regardless of who that racist white person was. Mr. Silberman continues to use Black people as objects in their own stories by placing the emphasis on famous white people and their dissection and denigrating view of said Black disabled people. The presentation of Black autistics in this fashion relegates historically important people like Tom Wiggins to chattel and this serves no purpose but to limit the reader's view of African American disability history as beginning and ending with slavery. Wiggins, who earned enough money while enslaved to hire a composer to teach him to compose blind, then fought until he was granted the right to have his own name on his compositions managed a monumental accomplishment for a man who was declared 'non-compos mentis' simply to keep him enslaved. He created variations in his compositions that do not fit the stereotype of the blind autistic savant pianist as understood today, so his groundbreaking work and his successful fight to put his name on his intellectual property were the ultimate triumphs despite his unlawful near lifetime enslavement.  Listen to this piece, The Rainstorm. Blind Tom traveled extensively and his musical expressions and influences were the sum total of his world travels, not just his life as a slave child on a plantation, a life he left at age 5 to begin a life as a traveling performer.
The Rainstorm by Tom Wiggins:

6. Don't erase Black autistic people from their own stories. The shock of not seeing a photo of the historical figure mentioned in the article, but instead, in a long article about the invisibility of Black autistics, the only image in the body of the article is that of white Leo Kanner, who would never have included Blind Tom in his classification and studies of autism in the first place, speaks volumes about erasure that while I'm certain Mr. Silberman did not intend happened again and with impunity in his article.

7. Don't talk about autistics of color without them. This piece of writing should not have happened. Instead, Mr. Silberman might have used his privilege to interview Lydia X. Z. Brown, E. Ashkenazy, and Morénike Giwa Onaiwu about the history of autism and race in general, the reasons they embarked on this project, and their individual and organizational goals with regards to the promotion of the voices of nonwhite autistic people. This means proper representation beyond simply requesting a quote, or using references from sources without noting their origin, thus erasing the voices of marginalized people speaking for themselves. Instead, we are subjected to a graphic of bursting black puzzle pieces, so the subliminal message is hammered home that Autism Speaks speaks for all Black autistics when they most certainly do NOT.

The article Mr. Silberman wrote is symptomatic of the structural racism embedded in our society, perpetuates stereotypes on race and autism, and erases autistic voices of color while its apparent intent was to bring these issues to light. How can this article be believed to aide endorsing any book on race and autism?  The road to hell is again paved with good intentions.

The Weight of Our Dreams is a powerful anthology and everyone who worked on it deserves a better endorsement. I hope they get one.


The Weight of Our Dreams information can be found here:
The Autism Women's Network information can be found here:
Autistic While Black: The Erasure of Black from Histories of Autism is here:
Steve Silberman's article title was derived from Mike Buckholtz's CNN article interview "The Invisibles" which can be found here:
Steve Silberman's Mark Twain references on Wiggins came from a medical model narrative probably here:
Steve Silberman paraphrases a reference I made to a scene from the documentary "Refrigerator Mothers" taken directly from my article where Dorothy Groomer discusses racial reasons why University of Illinois doctors refused to label her son Steven as autistic that excerpt can be directly accessed here:
A JHU Kennedy Krieger Institute Lead Paint Research study which harmed disporportionately poor black community members in Baltimore, disabling children, is the subject of ongoing multiple lawsuits which can be read about here:
A Civil Rights complaint has just been filed against the state of Maryland for approving a new fossil fuel power plant in Brandywine, a community that is 75 percent Black, brings the total plants producing toxic output to the community to 5 and can be read about here.
John Davis Plays Tom Wiggins here:

Thursday, April 14, 2016

Autism Essays: Recalibrating Autism Acceptance

Poster of Mustafa Çevik taupe letters on a black field read: This
Neurodivergent Multiracial Adolescent is aware of his mother's
race is aware of his autism and their ableism Deserves Respect
Your Awareness if paving the road to hell
Presume his competence #Tone it down Taupe ©Mustafa Nuri ÇEVIK
and Kerima ÇEVIK
Fiat justitia ruat caelum.

Sometimes I use profanity when I communicate. This is going to be one of those occasions.

If the three branches of the federal government united tomorrow and declared that henceforth Autism Awareness Month would be named Autism Acceptance Month throughout the nation it wouldn't mean shit to me. Maybe I would have been excited about the meaning of such a possibility four years ago. I'm not now. You see acceptance without representation is not acceptance. What I have seen is an insufficient amount of representation, objectification of intersected populations across the entire autism community, whether medical model or disability rights and a great deal of ableism.

My lack of enthusiasm is rooted in the fact that autism acceptance is now defined differently by every stakeholder presently promoting the concept. Acceptance as it was originally presented by autistic disability rights activists like Paula C. Durbin-Westby, is being drowned out by people who aren't really receiving or disseminating the core message. They are simply trading one word for another without the foundational mind shift necessary to grasp what is meant by acceptance and apply it to their lives. Tolerance is not acceptance. Tolerance is putting up with something even if you don't like or agree with it. Acceptance is lending credence to something or agreeing with it. Right now, many parents, professionals, organizations, allies and famous autistic people with internalized ableism conflate the word acceptance with the word tolerance and that needs to stop. One's tolerance of nonspeaking people doesn't mean one accepts them. This conflated message is wreaking havoc on  the message and purpose of Autism Acceptance Month.

The way autism acceptance has come to be presented is very much the way equal pay for women has come to be presented. The voices heard were white and had large platforms from which to broadcast their message.  On those platforms, all intersected populations of women were used as poster children for the cause, while their voices were ignored or silenced. The equal pay act of 2009 was named after a white woman in a country where my intersected demographic, Black Latina women, earn 54% of what white males earn. Ms. Ledbetter and her peers earn 78%.  Despite the so-called victory of the Ledbetter act, that disparity is not being addressed. Because the conversation of equal pays only matters when the speakers are white, once pay parity between white males and white females is reached, the rest of the women, minority, disabled and trans,  women in poverty and abusive situations in which equal pay could be salvation from disaster, won't matter to society. So it is for the appropriation and skewing of autism acceptance.

In the autism conversation, the demand for acceptance is false if acceptance means the exclusion or objectification of people of every intersected population in any acceptance model. If acceptance means only those who speak, and those who speak insist that those who do not use verbal speech are less than their peers with verbal speech, then that acceptance excludes and is thereby ableist. If an autistic woman is presented as our autistic mentor because she is famous and goes from TED Talks to book sales to conferences telling people that nonspeaking autistic youths  don't merit the resources that autistic youths who use verbal speech do, then that is not acceptance. That is ableism. If famous white autistics insist that they wish to continue carrying the label of Asperger's syndrome because they don't want to be associated with their peers in neurology who will always be visibly divergent, that is not acceptance. That is ableism and to both declare that one demands acceptance while rejecting one's own divergent peers is hypocritically ableist. If someone is presented as a neurodiversity expert who is white, cis, male and knows nothing about the needs or crises of intersected and nonspeaking autistic populations, but is constantly placed above autistic activists of color and neuroqueer activists and presented in the media as our leader and our expert on neurodiversity, then neurodiversity is being skewed to exclude intersected populations that have helped to bring the movement to this moment in history that is benefiting primarily white, famous, mostly male autistics.

My son and his intersected divergent peers have the human right to be accepted not tolerated. I shouldn't have to take the entire autism community to task for styling themselves superior to him or his peers.Yet here I am having to do so.

If families whose children have assistive technology and intensive speech services to communicate  now expect their children to become indistinguishable from their peers, that is not acceptance. If it is not understood that the presumption of competence requires the acceptance of all autistics, regardless of degree of disability, but stakeholders are unwilling to accept autistic community members who will remain with a degree of disability that will make them visibly disabled for the rest of their lives, then the message of autism acceptance is failing.

Here are some truths. Some autistic people also have intellectual disability that is severe. They have health concerns that are extremely disabling. If that makes stakeholders uncomfortable then the stakeholders are ableist.

We have to recalibrate the term autism acceptance.  A clear definition of what autism acceptance is must be stated in such a way that once any stakeholder attempts to use this term they will be held to a standard in which bigotry and ableism will not be tolerated. Those styling themselves experts in neurodiversity need to first root out their own internalized ableism, ableism against nonspeaking autistic people, racism and ethnic bias, homophobia and transphobia. Acceptance means accepting everyone autistic. Acceptance does not mean a country club for autistics who have achieved success to the exclusion of those who cannot do so because the world currently favors white, cis, autistics who can pass for allistic.

In a disabled population where 90% of the adults are unemployed, having a tech job fair for those who are verbal doesn't mean shit to me. My son is the child of a software engineer father and a former database administrator and linguist mother. He is allowed free access to a computer with no protection of the operating system from inadvertent tampering on his part. He has owned more than one computer. His sister's operating systems have repeatedly crashed over the years and hard drives have been reformated mainboards rebuilt and replaced, new computers bought. Our son is 13. He has spilled things on his computers, both PCs, and MACs, but he has never crashed an operating system, opened a computer virus or malware. Think about that for a moment. Yet my son would not be considered at any job fair for autistic people because he has no verbal speech and his AAC support is not sufficient to have him communicate his own interests or talent on electronic devices. A vast majority of autistic youth and adults, some who use verbal speech and some who don't, are in my son's position. They are not considered worth the resources when they are worth every resource available. Until our community gets that and works to lift all its members up, we will stagger along every autism month of every year, bleeding as catch phrases and terms are leeched from autistic activist culture and absorbed by the mainstream autism nonprofit industrial complexes for their own use at the rest of the autism community's expense.

We need to reclaim the term autism acceptance. We need to declare that acceptance means the true inclusion of everyone in our community. A community effort must be made to hold a mirror to ableist community members and show them the harm they are doing, demand they mature enough to accept everyone, and give our intersected members the agency in this movement they deserve.
Silently watching this happen without taking steps to make it right is enabling it.

Let justice be done, though the heavens may fall.

Post Script:
On the first day of Autism Acceptance Month, Paula Durbin-Westby wrote the following public service message, which needs to be emphasized and propagated throughout the autism community:

 "PUBLIC SERVICE ANNOUNCEMENT. Remember, if you or your organization uses the words Autism Acceptance, Autism Acceptance Day, or Autism Acceptance Month, even if you also throw in "awareness," You are making a commitment to support NEURODIVERSITY because that's the essence of Autism Acceptance Day/Month, started by pro-neurodiversity, anti-cure Autistics. Please share. I think it is critically important that, as other organizations and people use the term "acceptance," that they use it in its original meaning for those of us who have worked hard to make Autism Acceptance an *alternative* to "I accept my child but I hate their autism..." rhetoric. Because I am struggling to keep my family supported, I can't be online every minute of April. Please think about this when you use it. It's Time to Take Back April! Autism Acceptance Day and Month. Pro-neurodiversity, pro-supports, and services, against "cures," AAD was started to counter April "awareness" stunts that demean us. It has expanded to become a way of viewing Autism in a positive and accepting way. Moving WAY beyond negative "awareness!" NOTE: NO cure-oriented posts will be accepted. This is Autistic Safe Space- nothing anti-autism or anti-Autistic. Thank you in advance! "

The Autism Acceptance Action by Paula Durbin-Westby can be found on Facebook at:

Tone It Down Taupe - the counter protest action to Light it up blue, is on Facebook at:

Autism Acceptance Month's website is here:

Monday, April 4, 2016

Autism Essays: On Apple's iPad Ads And AAC For Intersected Autistics

Kasap et derdinde, koyun can derdinde
(The butcher is concerned with meat, the sheep is concerned with survival)
                                                                                   -Turkish Proverb

Mustafa's well-worn backup AAC device, an iPad Mini, with TouchChat
HD App. Most parents wanting iPads for AAC support don't know they
actually need 2 iPads, one for backup in case the other is damaged, lost,
 or stolen @Kerima Cevik

"I've been trying to find a way to get him an iPad," she said to me, her voice cracking. 
"I just know if we could afford to get him an iPad, you know, with one of those language programs, that they would have to teach him to use it to communicate in school." "I could fight for that until they do." "He's fifteen now." "All this time they could have done more."

I kept my voice calm and even on the phone. "All this is true and that is a fine idea, but right now we have to focus on how we can make sure he has his seizure meds for the next two weeks." 
"You can't keep using his emergency meds." " Let's solve that problem together first." 

  I talked to her about the Partnership for Prescription Assistance program.  When her autistic son was out of the ER and back home stable and resting, I quietly asked what else they needed. "Have you been keeping up with your husband's medications and your own as well?" "Are you behind on your power and heating bills?" "When was the last time you and your husband ate?"

"But what do you think about my iPad idea?" She began again. "I just know if I keep him on a GFCF diet and get him an iPad, he'll be more able to ask for help when he needs it." "His service provider says he's too disabled for an iPad but I just know..." 

I told her I would send her contact information for MDTAP, The Maryland Assistive Technology Cooperative, and to reach out to them for possible assistive tech evaluations and to have him try some AAC devices on loan.   She was ashamed of her state of hunger, ashamed the DDA would discover what they'ed been doing to afford the special diet and out of pocket things for their son. She was terrified they'ed be seen as unfit parents and their son would be taken from them. 

"Promise to keep going to these food pantries?" I asked. " I promise," she answered. I told her there was no shame in needing food, that their present impoverished position had little to do with any failing on their part, and their son needed them to be fit and well nourished to help him. This was more important than anything else, that they all be healthy and safe.

We discussed nonprofits that could help defray the cost of their heating bills. 

When she called back from the nearest food pantry to say that everyone was kind and she was no longer ashamed, saying they would be okay and I was assured they would help another family in need, I hung up for the last time and let the tears come.  

How could a family with a teenaged son with intense support needs, a family who despite being long time disability waiver recipients were impoverished,  afford a $750 iPad along with the necessary protective cover with built-in amplifiers, as well as the language app required to give him the speech support he needed? The total cost was in the neighborhood of $4,000. In fact, they would need a backup AAC device as well, pushing this to nearly the same cost as the Dynavox AAC device the iPad + AAC app were competing with.

How could their son's social worker not notice that his mother, his primary care provider, was slowly starving to death in order to feed her son the special diet the extremely well off autism parents swore by? She wanted to change her son's life. I didn't have the right or the heart to tell her that wasn't fiscally possible. 

In the parallel universe of Autism in the American Dream, it's Autism Acceptance Month, and Apple has rolled out two ads for iPad that tell the story of an autistic teen named Dylan, who types to communicate. Here is one of them:

When I saw this ad, I thought of that particular nonwhite mother, and her tremendous desire for an iPad for her son when she and her husband were giving up everything, including food security, and living not month to month or day to day but hand to mouth to provide for him. What about her son's right to communicate? What about their dream?

I witnessed the whipped up virtual controversy over whether or not Dylan, the teen in the Apple ad, is using Facilitated Communication (FC) to type, when throughout the ad he appears to be typing independently. I thought about the staggering level of privilege inherent in the autism conversation. How proudly people discuss how affordable this technology is for autistic people when that is true only in the universe of the Autism Wars of privilege and that is reflected in this excellent ad with this very fortunate white autistic teen, whose entire life was changed with an iPad, a full-time speech pathologist, and any other supports he needed that the families I witness struggling could never afford.

While those comfortable parents who dominate the autism conversation argue about the Apple ad oblivious to the ableism inherent in their presumption of Dylan's incompetence, people are wondering how to provide basic communication supports for their autistic loved ones in the only setting they can afford such services - the public school system. Schools give them as little support as they can in one of the most critical areas of nonspeaking autistic support need; speech and language. But of course, none of this matters to families like Dylan's or those arguing about whether Apple's latest ad supports FC. 

Does it dawn on these opposing parties screaming at one another that very few families who aren't flush with disposable income from either the generosity of extended family members or immediate family wealth, can even afford FC training, or other typing based options like Rapid Prompting Method (RPM) for their children? Do these people have any clue of how perilously close so many families of autistic teens and adults are to catastrophic poverty? How many autistic adults who actually need the communication support of an iPad feel fortunate if they qualify for section 8 housing, health care, and food stamps? 

This is the root of the problem with the Autism conversation from this place of intersectionality where I stand witnessing all this disparity in priorities and arguments of what is needed while crises continue for families who aren't white and aren't wealthy. 

In the hard world of real life outside the privileged American dream, iPads are neither available nor are nonspeaking autistic children of color assessed for their use as speech devices in public schools.  IDEA requires such assessments for assistive technology in areas of critical deficiencies that bar learning. But they are rarely done. Printing PEC cards are cheaper than training teaching teams to support speech devices. Speech-language pathologists are too pricey to have them working with nonspeaking kids in public schools the 40 hours per week they would need to begin to master AAC communication on the most inexpensive AAC adapted iPad. No IEP team would create an individualized education plan for one nonspeaking student to receive one year of nothing but speech language towards mastery of a communication device. Intensive AAC speech support towards fluency is the way the world of special education and individualized education plans should work, but it does not.

Meanwhile far away in the land of autism for the American dream, parents shout for full academic curriculums and full inclusion for autistic children. Because their children already have all the outside speech, OT, PT, and any other supports they need, so their priorities are now social skills and integration, for the renewed dream of college for their offspring. 

The African American retired professional with the 15-year-old nonspeaking autistic son will have to continue to fight for that iPad and language app, because when the cost of living soars while a family's income is fixed they can't save any money. An iPad as an AAC device is a dream very much like winning the lottery. A dream with a one in a million chance of happening.

 I often wonder if that family was caught up in the Baltimore riots, trapped in the city while getting his medical care. I wonder how they are faring in the struggle to survive. I wonder about another family, an African American single father with two grown nonspeaking autistic sons who like to wander. They lived near Freddie Gray's neighborhood, and I wonder how they fared during the riots too.

I was the advocate of last resort. People heard about me through word of mouth. I would try and solve the emergencies they couldn't tell their service providers, schools, social workers, and distant relatives about and tell them how they could help themselves to solve any future ones on the condition they did the same for another family. Then they were on their own. The work was so brutal that for the sake of my own son's needs and my own emotional and physical health, I stopped doing it.

This is the truth of the parallel universes creating a canyon divide in the autism conversation. I am a witness to the frivolity of  arguments about the method by which an autistic teen learned to type independently,  thus gaining autonomy, while I try to shout that families of color are now slipping into poverty, and wanting an iPad based AAC device just as desperately as the well-off white mother in Apple's latest iPad ads for Autism Month wanted one for him.

The butcher is concerned with meat, the sheep is concerned with survival.

The voices of privilege are concerned with whether or not an autistic teen named Dylan is using FC in Apple's iPad ads for Autism Acceptance Month. I am concerned with how yet another generation of nonwhite, nonspeaking autistic children will gain access to the relatively affordable, but still expensive, iPad/Touchscreen devices, speech apps, and the speech supports they have a legal and human right to have in order to achieve even baseline communication skills for their own survival in a hostile world. 

On Apple's iPad for Autism Acceptance Ads
Emily Willingham, Ph.D
On Maryland's Assistive Technology Cooperative
On Disparity in Communication Rights In Public Schools
On the Partnership for Prescription Drug Assistance - a free program

Thursday, February 25, 2016

Death Without Dignity: The Inevitable Consequences of Maryland's End-of-Life Option Act

"Life, although it may be only an accumulation of anguish, is dear to me; 
and I will defend it."


Nearly one year ago, I gave written testimony before the Maryland House and Senate regarding opposing the Richard E. Israel and Roger "Pip" Moyer End-of-Life Option Act. You can read that here:

Readers should also see the disturbing new study on exactly what has happened to the now perverted euthanasia laws in Europe here:

Where The Prescription For Autism Can Be Death

I am going to bring up my points of opposition to the annual reintroduction of this bill, adding this very critical point first. In the wake of the passage of or the Affordable Care Act (ACA), the rush to embrace euthanasia protocols is already having serious punitive consequences for terminally ill patients and this harm should disturb everyone. The myth of rebranding legalized assisted suicide as dignified and rolling out a new, hip lexicon of language to hide assisted suicide legislation under the guise of "empowerment" and "choice" does not change these laws opening the door to abuse, denial of insurance coverage for patients who wish to live and continue medical treatment to do so, and the expansion of the law beyond its intended scope.  With insurers going as far as flatly stating in their rejection letters to patients that they refuse coverage of life-sustaining care but will pay for euthanasia drugs, cases like those of Barbara Wagner and Randy Stroup make it quite clear that mandated assisted suicide places those with limited means in an inhumane and unacceptable ethical position that contradicts all vaunted "beautiful death"  or "choice of death empowering terminally ill patients" stories.

I oppose this revised bill.
My primary concerns:

1. Patients can request physician-assisted suicide if a doctor has diagnosed them with a terminal illness and six months or less to live. Such a prognosis is nearly impossible to accurately predict.  Please see my own story in the link above.

2. Historical evidence both here and in countries where such laws have been enforced for years show that regardless of the limitations or narrow verbiage of the legislation, said laws foster abuse, and expand to a scope beyond their original intent. Those impacted are vulnerable populations including those with disabilities the elderly, and those with a psychiatric disability.

3. The bill places medical professionals in an untenable position complicit in hastening the death of patients rather than fighting for their lives and dismisses the role of an entire branch of medicine dedicated to palliative care.

4. There is clear evidence that similar laws have already been  interpreted by insurers as a way of denying services for terminally ill patients who fit the diagnostic criteria for assisted suicide but wish to fight to continue to extend their lives, placing vulnerable patients in unethical positions while allowing insurers to push the end of life option to reduce costs.

No medical professional can accurately estimate the lifespan of any patient. Thus the inherent risk in basing a law on the idea of a medical declaration of a limited lifespan.

As I stated in my testimony last year:

" I am a resident of Montgomery County, and mother to a wonderful 13-year-old boy with multiple intellectual disabilities and nonspeaking autism.  Our son has many health challenges. I have a deep concern that if this bill becomes law, it will expand away from its intended purpose and become a danger to patients like my son.

The example of the Netherlands is a clear indicator of what happens when assisted suicide laws exist to be expanded upon. Quoting the Disability Rights Education and Defense Fund’s research into this matter:

“Herbert Hendin documented how assisted suicide and lethal injections have become not the rare exception, but the rule for people with terminal illness in the Netherlands."

"Hendin stated in Congressional testimony, “Over the past two decades, the Netherlands has moved from assisted suicide to euthanasia, from euthanasia for the terminally ill to euthanasia for the chronically ill, from euthanasia for physical illness to euthanasia for psychological distress and from voluntary euthanasia to nonvoluntary and involuntary euthanasia. Once the Dutch accepted assisted suicide it was not possible legally or morally to deny more active medical [assistance to die], i.e. euthanasia, to those who could not effect their own deaths. Nor could they deny assisted suicide or euthanasia to the chronically ill who have longer to suffer than the terminally ill or to those who have psychological pain not associated with physical disease. To do so would be a form of discrimination. Involuntary euthanasia has been justified as necessitated by the need to make decisions for patients not [medically] competent to choose for themselves.”[106]”

“Hendin has also described how the government-sanctioned studies suggest an erosion of medical standards in the care of terminally ill patients in the Netherlands: 50 percent of Dutch cases of assisted suicide and euthanasia are not reported, more than 50 percent of Dutch doctors feel free to suggest euthanasia to their patients, and 25 percent of these doctors admit to ending patients’ lives without their consent.[107] Further, he reported that, for a thousand people each year in the Netherlands, physicians have ended their patients’ lives without consulting the patients.[108]”

Our State legislature voted to make physician-assisted suicide a felony in 1999, and rightfully so. This bill is very open to the abuses and decline of palliative care happening in the Netherlands. It makes me fear for our son’s well-being and for the future of our great State. Our General Assembly is ahead of its time in many decisions it makes and laws it passes, but this bill is not a step forward. I fear it is a step off a cliff."

References and Resources:

Where The Prescription For Autism Can Be Death

House Bill HB0404

The Furor Over Death Drugs and the Cases of Barbara Wagner and Randy Stroup

Disability Rights Education and Defense Fund Policy on Assisted Suicide

My Terminal Illness Survival Story as testimony before Maryland Congress