AutisticWhileBlack: Against The Erasure of Ron'Niveya O'Neal

 

Ron'Niveya O'Neal, a beautiful
Nonspeaking Autistic Girl wearing
a filter crown of flowers that 
match her pattern pink and white 
sweater.

On April 7, 2018, the body of 9-year-old Ron'Niveya O'Neal was laid to rest in Tampa, Florida. Ron'Niveya was a beautiful, nonspeaking autistic African American little girl who was brutally murdered by her own father, Ronnie O'Neal III. 

I have been following the case. The press had a feeding frenzy with O'Neal III defending himself, shrieking at the jury, and being allowed to cross-examine his now 11-year-old son Ronnie O'Neal IV. Young Ronnie is the only surviving member of that night of familicidal violence. 

Neither the press nor the autism community gave a damn about Ron'Niveya. The media rarely mentions her by name. She is called Ronnie IV's disabled sister, or Kenyatta 'Keke' Barron's daughter. She is the evidence of a double murder. But that is all. Her humanity has been stripped from her.

I have seen no cries for justice for Ron'Niveya. Was she mentioned in the day of mourning rolls? I honestly don't know. But what I do know is that Ron'Niveya mattered so little to all stakeholders in the autism conversation that no one mentioned her. No one cared. And that, after the entire world view of Black suffering shifted in that wake of witnessing the murder of George Floyd and learning about the shooting death of Breonna Taylor is inexcusable.

 I am posting Ron'Niveya's obituary below. Read it. Remember her not because she is a symbol of violence against nonspeaking disabled youth but because she should matter as much as Alex Spourdalakis mattered. She should matter more than those in our community who sat silently while John Elder Robison happily provided autism as an excuse for Dylann Roof, someone who premeditated and murdered innocent African American parishioners at Mother Emmanuel AME Church in the hopes of beginning a race war. 

The erasure of Ron'Niveya and so many other nonspeaking autistic children and adults of color like my son made me so angry that years ago I began writing about them. Trying to keep them visible. But now I am much angrier. Because this did nothing to stop the horror of what a high profile autistic white cis male like Robison did while everyone else except Lydia X. Z. Brown and Sam Crane was silent. 

Everything about how Autistic Black people, especially nonspeakers, are treated in this community needs to change. To those who put themselves at risk to demand change happen, to the true allies against ableist racism in our community, thank you for your tireless efforts. You all have my deepest respect. 

Obituary (via Integrity Funeral Services) :

Miss Ron’niveya O’Neil

Ron'Niveya O'Neal, a
beautiful brown-skinned girl 
wearing her natural hair into 
two high puffs, and huge tulle
 pale pink bow and a pink T-shirt
with a big white heart at its
center with the words 'boy, bye'
written in the middle of the heart. 

A Celebration of Life for Miss Ron’niveya O’Neil will be held on Saturday, April 7, 2018 at 11:00 a.m. at Greater New Salem PB Church located at 1605 N. Nebraska Avenue, Tampa, 33602 with Elder Dr. Benjamin Curry, Pastor officiating. Interment will follow at Rest Haven Memorial Park.

Ron’niveya O’Neil was born July 29, 2008 in Hillsborough County to Kenyatta Barron and Ronnie O’Neil. Ron’niveya attended school in Hillsborough County. She attended Foster Elementary and continued on to Corr Elementary. She loved getting up and seeing her Mommy and brother. She loved dressing in pretty clothes and wearing earrings. She loved eating Oreos. She loved seeing her bus driver Terry Wallace and her teachers and Corr Elementary. Ron’niveya is preceded in death by her mother Kenyatta Barron. She leaves her cherished memories to her loving brother Little Ronnie, grandparents Booker Ray and C. Barron. Alonzo McNair and Lisa Smith. Her aunts and uncles Jonathan Barron, Alisha Barron, Javario Barron, Daisatta Baldwin, Sasha Eliza, and Tabario Cobbs. Her great grandparents Samuel and Pamela Barron, and Alvin McNair Sr. 

Her great aunts and uncles Latonya Barron, Teresa Barron, Claire Barron, Inez Foxworth, Sabrina Foxworth, Aretha Foxworth, Josephine Holmes, Carolyn McNeal, Jacqueline Monge, Tony Barron, Simmley Barron, Jimmy Foxworth, Eddie Holmes, Rodney Baldwin. Her cousins, Carrieonna Baldwin, Roslyn Baldwin, Rodneya Baldwin, Destiny Baldwin, Rodney Baldwin Jr., Herashiona Crum, Deontae Barron, Tony Barron Jr. , Randy Barron, Tyler Barron, Olivia Barron, Cynthia Green, Chianita Austin, Tavaris, Cammi, Marcus Nesbitt, Lisa and Elaine McCormick, Joyce Ray, Romaine Wint, and a host of other relatives and friends. A special thanks to the men and women of the Hillsborough County Fire Department, the Hillsborough County Sherriff's Department, and to the various staff at Tampa General Hospital.

Autism Month Essays: The Price of Erasure

Harriet Tubman,  By artist H. Seymour Squyer, 1848-18 Dec 1905
National Portrait Gallery, Public Doman,

https://commons.wikimedia.org/w/index.php?curid=9717226

According to POLITICO, "Treasury Secretary Jack Lew on Wednesday will announce plans to both keep Alexander Hamilton on the front of the $10 bill and to knock Andrew Jackson off the front of the $20 in favor of Harriet Tubman." 

If this is true, it is a huge lost opportunity for a tremendous victory in the disability rights community's fight for representation and the presumption of competence.

If this is true, despite the erasure of neurodivergent people of color from histories of autism and disability studies textbooks , it is a victory for intersected disability rights activists because Ms. Tubman was neurodivergent, the result of repeated beatings and catastrophic head trauma while enslaved. Consider that her best civil rights work was done after becoming neurodivergent and what I mean becomes apparent. Harriet Tubman is the textbook historical example justifying the argument for the presumption of competence.

This dual situation of loss and gain is a typical example of why I began to write constantly about racial injustice within our community, particularly on the damage done by erasing neurodivergent people of color from histories of autism. Does everyone feel the price of erasure now? So much gaslighting has been done on how whitewashing must be accepted by those of us who are not white in order to present these histories to fragile white audiences that this incredible opportunity to move from reading about a neurodivergent historical figure in a recent history to lobbying in support of representation for all neurodivergent people was squandered by the very act of allowing our own activists to accept the erasure of Ms. Tubman's disabled Black identity, perpetuating structural racism among our own movements and organizations. It could have had the lobbying power that Lin-Manuel Miranda's voice had on the heels of a triumphant broadway production of Hamilton, personally reaching out to Lew to keep Hamilton on the $10 bill. No monumental opportunity some best-selling history of neurodiversity followed by a powerful voice for Harriet Tubman's face on U.S. currency will ever happen.That ship has sailed.
What is the benefit of editing out the voices of people so powerful to disability rights representation that their places in history have overcome the standard erasure endemic to their race and origin? How does this erasure from histories benefit the fight for my son's right to equal representation as a brown autistic teen?

Ah, the irony of the victory and failure of this series of events! Anyone grasping this after I've pointed it out should know that Ms. Tubman's neurodivergence, which was described very much with the same symptomology as today's TBI-induced autism, should have merited a mention in histories of autism. Those activists who aggressively insisted I was overreacting to the new slew of histories of autism and critical disabilities studies books that perpetuate the same erasure can now see where this kind of gaslighting leads. Neurodivergent Black people existed and mattered at periods in history when my race was made into chattel in this country. They played major roles in our nation's history and in the histories of human rights movements for centuries.

But all of these enablers of erasure can keep worshipping at the temple of white-washed histories only acceptable when written by white people and call themselves disability rights activists.

Here are the choices. Stew in the hypocrisy of fighting for disability rights while denying the rights of disabled people who aren't white. Or, when looking in the mirror becomes difficult, maybe try giving nonwhite disabled voices equal platforms along with their rightful places in history. 

Hopefully, this can be more than a token victory or appropriation of Ms. Tubman's life, objectifying her while silencing her neurodivergent black peers.

Resources:

About Harriet Tubman, Civil Rights Activist

http://www.biography.com/people/harriet-tubman-9511430

About Tubman replacing Jackson on $10 bill

http://www.politico.com/story/2016/04/treasurys-lew-to-announce-hamilton-to-stay-on-10-bill-222204

About the erasure of Black Autistics from Histories of Autism

http://intersecteddisability.blogspot.com/2016/01/autistic-while-black-erasure-of-blacks.html

The Only Things I'm Positive About #AutismPositivity2015

My husband and I took a moment to watch our son asleep this morning. He was wrapped in a tangle of sheets, unwilling to release his firm grip on a tiny piece of plastic that looked to be a lego piece. His handsome face was peacefully inhaling and exhaling deeply and not quite snoring. His arm was up in a position that made it clear he did not so much drift off to sleep; rather, his body won the battle to rest and recuperate against his iron will to keep moving. Ever darkening peach fuzz above his lip does not detract from the innocence of our son's face in sleep. These are the moments when I catch my breath and wonder how I was part of producing such a lovely human being. I have a difficult time understanding how people fail to see him as we do.

What a hellish year its been so far. So much we are trying to shield him from, so much hate, harm and pain. Surrounded by all the danger and uncertainty I was so sure our nation would outgrow, I can say the only things I feel positive about are that we love him, that autism is not an anthropomorphic demon "with" him, dogging his steps, waiting to trip him up, and that this will of iron he has had since infancy is actually becoming steel, forged in the  fire of these horrific adversities life keeps throwing in our paths. I'm positive I belong beside him, guarding his flank against the racist, ableist, ignorant, hateful and well intentioned enemies that stand between him and his rightful place in this world. I am positive he is not a burden. I am positive of his right to be part of any community he lives in.

Mustafa Bey

One of my favorite pictures of him reminds me he is growing up. People say he looks much older than 12. My giant younger brother was about this size at 12. Mu holds a resemblance to his paternal grandfather, a man who was tall and commanding, a maritime engineer. All those things about him
that intimidate the uneducated have never bothered me. I'm not sure why that is. I call him my Pan-Turkish American Pehlivan. I sing songs to him about John Henry and Kiziroğlu Mustafa Bey and tell him that those who were like him never gave up; they commanded respect and he should do the same. My concern continues to be that he should be allowed to participate in life as anyone would. Autism shouldn't be something he's "with", like a vaudeville ventriloquist's dummy in a suitcase that is carried with him, attached to an arm. Our son's neurology is  a descriptor of who he is like any other adjective we use to try and define him.

 He is American/Nonspeaking/Turkish/Hispanic/Black/Indigenous/Autistic/Obstinate/Charming. He is all that and yet more than the sum of all. He defies description.  He reflects and refracts each aspect of himself. That is who his is. Sometimes I see him pounding down the stairs they said he'd never climb without support or laughing, jumping wildly in the sunlight and laugh with the sheer joy he taught me to express fully.  I pity those who don't see him as I do. Perhaps it is the same as gazing too long at the sun. Maybe they should learn to not look directly at him just as he, in deference to not seeing their souls' secrets bared, does not look into their eyes. Realities can be overwhelming.

The hardest thing about being Mustafa's mother is people around me projecting their own ableism on me and telling me how I should feel about him. I shouldn't be happy because they wouldn't be. I must accept that he is an unacceptably divergent son, because they cannot accept him. I must be near some breaking point because were they in my position they would be. They have no idea. They just assume they do. Their forcibly imposed conclusions are the most difficult thing to fight each day. The time consumed countering all that insistent negativity about nonspeaking autism could be better used just getting to know my budding teenaged son.

When a word or short sentence bubbles its way to his lips it is a sweet jewel because verbal speech is nearly impossible for him. I know. I've seen the scans of his brain. His voice, a deeper richer combination of a voice I inherited from my mother and her ancestors, the voice our daughter has in a slightly higher pitch, is heartbreakingly beautiful. If Mustafa ever sings it will be something to hear. But that doesn't matter to me now. I just want him to be given the respect he deserves. He has inherited something I did not wish to give my children; I don't mean an autism gene. I mean a legacy of being a marginalized human being in a negative world. Acceptance? Acceptance is not enough.

I am opening the eyes of my heart and telling the world, here is my beautiful neurodivergent son, my most precious gift to you.  You cannot simply accept him. Respect him. Allow him to be an equal member of society. Cease killing his peers and silencing them. As for loving him?

 We have all love he needs.

Neurodivergence and Representation: Magic Maps, Musings, Farewells 1

The magical Leah Kelley blogger, speaker
educator, awesome parent of H

Leah Kelley, who blogs at 30 days of Autism, created an amazing people map for her son, H, who shows every indication of becoming a great voice for the next generation of autistic adults. She writes about it in her post Gathering At TASH and the Magic People Map. Leah has been kind enough to let me use her people map to feature some of those voices who found creative and out of the box resources to help afford the trip to Washington D.C., speak out, and participate for those they represent. Read about them while I try to gather my thoughts on various points regarding divergence in neurology and representation. I'm going on a hiatus, a sabbatical if you will, and narrowing my focus. I'm not quite sure how it will all work out. Hopefully placing this beautiful map of people cards throughout the post will help outline a path for my thoughts on where I am now and how to move on from here.

Leah's deep love and respect for her son H, her strong background and experience as a special education teacher, along with a keen understanding of what supports divergent people need to navigate public spaces, shine in the concept of these cards and made her latest great idea very much worth sharing. It is the definition of what autism parenting with love and acceptance entails.

30 Days of Autism  also hosted an excellent quick assessment of  the TASH 2014 conference from Cara, who blogs at That Crazy Crippled Chick, and you can read about that here. I actually recognized Cara from the I Am Norm Campaign's first Youth Summit! She has gone on to graduate school and outstanding activism.

My son Mu. My living example that nonspeaking
autistics deserve the same respect that the rest of
 the spectrum is fighting for

The Bad: I do want to be clear about my frustration at my  failure to bring about what was to be the most important contribution I could have made at TASH. I wrote about that on the I∩tersected blog, which you can read here and I may expand on it when I hurt about it less. My main job as a parent activist who works to be an ally is to use my parental privilege to create opportunities for disabled disability rights activists representing marginalized groups to be able to take the podium and speak on what matters to those they represent. My being there, or me being able to speak for or in place of two great activists who were Black and disabled was never the goal or the point. Had I wished to address people alone I would never have asked them to join me.
I was unable to garner the support to succeed in helping two important disabled activists afford the cost for the accommodations and supports they needed to have their voices heard at TASH 2014 in the moment when harm to disabled people of color needed to be spoken about the most. It was the latest in a series of events that marked my decision to withdraw from everything except blogging. I am now simply a blogging autism parent.

I realize now that the organizational aspects of disability rights activism as they are currently structured, are constrained by the same institutionalization of privilege, hierarchal discrimination based upon degree of disability, layers of intersecting factors which are othered by organizations lacking equal neurodivergent representation, and the racial discrimination that is polarizing our country in general. The voices of marginalized groups within disabled populations are already muted  (as defined in muted group theory by E. Ardener,  S. Ardener, C. Kramarae, and M. Orbe). Institutionalized disparities in representation and support for marginalized subgroups in disability advocacy made my task as an independent activist seeking grant funding for direct support of disabled activists who advocate for said groups impossible.

Me, retired activist, glasses perched on
on the end of the nose I inherited from
my ancestors, proud mom to
neurodivergent Mu.

These recent events, combined with what I have experienced over the past few years when trying to seek help for our son or other intersected neurodivergent individuals in need, have brought me to the point where I feel the need to step back from activism and try to work out fresh approaches to how intersected people of color can be fairly represented beyond tokenism and appropriation of content and ideas. I  also see sharp differences between how individuals in the dominant religion and those who speak for populations with high incidence disability are responded to when they reach out to our community to request assistance for themselves or others and when activists for marginalized groups request the same help and support. I therefore don't see any point in pushing against this wall of discrimination alone when such effort is unnecessary for those who fit a more acceptable intersected constellation. That privilege of limited intersectionality achieves whatever outcome they wish. I'll expand on this later as well.

I truly believe that with the exception of neurodivergent families of diverse races who conform to the dominant culture in every other way, the autism conversation will continue to be dominated by white privileged parents with the financial means to provide ample supports for the 'therapy' and education of their children. We will continue discussing what those children need and policy will be dictated by that group rather than by neurodivergent adults whose needs are underserved or heavily intersected populations who are both underserved and overshadowed by the dominant group. This is true across organizations. If someone of color is in a decision making position, that person must be from a class position that disassociates itself from those in poverty and silently allows the dominant voices to dictate autism policy, because when they have reached a place of power, they tend to forget that their true purpose is to serve their people. Instead they stay silent and do as they are told and think of their own gain. They justify this by the old myth that somehow they must accept the role of token in order to make history so that others can follow.

The Good: A chance to meet and have lunch with the next generation autistic disability rights voices was a great gift

H, son of Leah Kelley, autistic activist,
speaker, student and incredibly cool dude.

during the brief moments I was at TASH.  Henry Frost was unable to attend, but his example and presence were felt. Renee (see magic people card after Emma's  and Henry's below) invited me to lunch with her wonderful kids and H.  As we were having lunch with these amazing young people,  a great deal of self doubt and self loathing, the self directed ableism that haunted previous generations of autistics, was not there. Both speakers and typers were at peace in their own diagnoses, and this more than anything made me feel the online community may be having a direct positive influence on the new generation of tween and teen neurodivergent youth. This confidence and comfort with who they were, the relaxed way in which conversation flowed from neurology to gaming, from there to interests of the moment was uplifting and almost made my bitter disappointment with the underrepresentation of diverse voicesat the conference itself dissipate.  While we were having lunch I realized that a group of African American disabled activists were having a working lunch and discussing strategy for what was clearly their panel which would be occurring after lunch. Roughly 10 to 12 activists sat, ignoring everyone else in the retaurant. An opportunity was there to gain community involvement in their panel and simply network. It was heartbreakingly sad that their self imposed isolation was happening when we were all there, smiling and more than willing to listen had they reached out to us. But that is the state of activism now. We, activists of color, are burnt out and tired of a great deal.

Emma Zurcher-Long,  Autistic Activist,
Performer, student, advocate for non-
speaking autists who type to communicate

I recently ran across a trailer to an upcoming documentary on autism that begins at a short conversation with Temple Grandin. Because we have not reached a moment where our community has true representation in it, documentaries about autism will always have Temple Grandin in them, and will in many cases mention the movie "Rain Man" when discussing level of visible divergence. So Dr. Grandin states she is concerned about what she terms "too many smart kids, on the real fully verbal end of the spectrum, all they want to do is talk about their autism." Apparently, they spend more time discussing their autism than they do discussing their intense interests. I would say that it is a good thing that autistic youth discuss autism since their autism is part of who they are. It is quite impressive to me that young people know themselves well enough to discuss their support and accommodation needs, how their diagnoses give them advantages and challenges, and feel comfortable doing so. In fact Dr. Grandin has made a serious amount of money and gained great fame talking about her autism and writing her opinions about autism, when autism is not her area of academic specialization but is in fact part of who she is. So I was a bit surprised at her statement of great concern. If autistics start directly discussing their neurologies at such young ages, they will be able to advocate for themselves and others without self doubt or shame. That self advocacy is the goal, and a giant step towards having them direct the autism conversation and by doing so, direct their own futures. Reaching such a goal would give voice to hundreds of individuals across neurology,  rather than the present narrow field of voices limited to well intentioned autistic 67  year old Ph.D. s of animal science speaking in such a way as to obliterate the voices of those who type to communicate.

Henry Frost - Autistic Activist,
student, advocate for full inclusion, public
speaker and activist for non speaking autistics

Meeting some very confident young people at TASH left me hopeful despite my sadness for my own people. I would think Dr. Grandin would be proud of young people who self advocate about their own neurologies. Her statement also excludes very young activists who type like Henry Frost and Emma Zurcher-Long, able to communicate eloquently at such young ages with AAC support. Her insistence in seeing the future of our community only in kids on the spectrum with verbal speech when such powerhouse young typing activists are making names for themselves is not just sad. It is a very good example of hierarchy of disability by presumption of competence based upon what is visible rather than what is possible. Independent young typing activists leading their own generation are the role models for nonverbal autistic presumption of competence. Dr. Grandin speaks as if there was never a groundbreaking documentary called Wretches and Jabbers that changed the global conversation about communication and nonspeaking autism, and as if Naoki Higashida never wrote "The Reason I Jump". The reason Emma Zurcher-Long is a public speaker (note the word speaker meaning communicator - she types through most of her presentations that is her primary communication method) is because of the impact of these nonspeaking people.  Probably one of the strongest voices in our community is Amy Sequenzia who also communicates by typing. Dr. Grandin is a privileged

Amy Sequenzia, Autistic Activist and
Poet, advocate for nonspeaking autistics
users of AAC to communicate

voice in our community and she sets up an ableist hierarchy of disability, immediately feeling the need to insure that the listeners understand that she's excluding nonspeaking children when she discusses "the really smart kids". If she has this ableism, and she is speaking to audiences filled with parents hoping to learn something to help their children, what is she teaching them about my son and his peers? I have no soapbox that will equalize the reach of my voice and allow me to counter such ingrained prejudice. Her fame has given her a large platform but she is using it to segregate autistics who type or need supports to communicate from those who appear to have verbal speech and may not require supports in the classroom or have less visible expression of divergence in neurology.  I've tried to counter this attitude, with little success. I now need to step back and think of new ways to approach these kinds of tremendous obstacles within our community in addition to continuing my son's homeschooling and fighting the wars we must fight for representation of our loved ones outside it.

Renee orchestrated lunch with young autistics
as a conductor would a concert. 

I am also sprinkling this small gift to you of magic cards of people as I write, because the people in them are so dear to the autism wars for driving representation beyond acceptance and the incorrectly used "awareness" term. They give hope to our community because they lift others up rather than simply promoting their own careers in disability rights advocacy or activism. They act with the community in mind. They are refreshing voices in a sea of self serving organizations crushing those they are pledged to serve underfoot while wondering why the very members they harmed are not building community or volunteering for them any longer. I'm doing this so that should someone happen upon this post while I'm gathering thoughts and on my hiatus, they can google and find their way to the words and works of said folk, and learn from them. I want them to share my joy and marvel at strong voices in the very young and the not so young. I would like to see tweens and teens of diverse constellations on similar cards next year. The internet has strong neurodivergent poets, artists, graphic artists, singers, and authors, who are incredibly young. Others were around when Ari Ne'eman was too young to know what his future would hold. Please learn about these people, learn from them and tell them your stories so we can hear your voices and learn from one another. I hope the cards give everyone heart, make their burden's light and guide them towards the understanding that whether my voice is here or gone,  the potential for a powerful community in the neurotribes is strong,  can be united, and if united could overcome any obstacle.

----------------------------------
In case you missed the link in the first paragraph 30 Days of Autism can be read at (http://30daysofautism.wordpress.com/)

This is  the end of part one of a ridiculously long post divided into three parts.  Part II is next

To Autism Speaks, from the "Woman of Color"

When I was 12, I was put on my class debate team. One of the first concepts we were taught was the difference between debate or any manner of constructive dialog and a shouting match. Rule one was to be informed, and never launch personal attacks on the individuals presenting the opposing view. Character assassination always lost the debate.

Perhaps everyone has noticed an increasingly large number of autism organizations, autistic disability rights advocates, parent advocates, and autism families are calling out Autism Speaks. Any nonprofit organization being criticized for any reason, should above all be both transparent and receptive to the concerns and criticism of anyone, particularly the population it professes to serve. It should listen to the families it demands fundraising efforts and donations from. Autism Speaks is not doing so.

Just to summarize, what Autism Speaks did this time was launch a campaign to control public policy on autism beginning with a massive lobby effort taking the form of a "policy summit". What is wrong with this is that there are a great many other autism and disability related nonprofit and advocacy organizations who have autistic board members and diverse representation. Autism Speaks had no right to try and dictate policy alone. The right thing to do would have been to call a summit inviting all autism organizations and try to agree on policy. I say this because Autism Speaks has no autistic representation. I want to be clear on this. John Elder Robison was never made a member of the board of Autism Speaks. A careful inspection of autistic adults working with Autism Speaks will show none being given any true leadership role. They are given the specific message of promoting the medical model of autism, and must first show they are willing to propagate Autism Speaks' view of autism in order to gain grant money or support. They must at the very least, not argue with Autism Speaks. This is qualitatively different from being a decision making autistic member of the board.

During Autism Speaks' lobby invasion of Washington D.C., Mrs. Suzanne Wright signed her name to a blog post so heinous that the entire autism community, even parents who formerly supported Autism Speaks, reacted in outrage. I did as well (click here to read more). It was inexcusable. We have moved beyond that horrible time in history when disabled children were presented as tragic figures, and the fear of a world full of them used to gain some financial or other benefit for a nonprofit. Rather than respond to the genuine concerns of families Autism Speaks ignored them. No concern has been expressed about John Elder Robison resigning from his association with Autism Speaks. Were I a board member that would concern me greatly.  I wondered why board members were not reaching out to those they accepted membership to serve. Then I inadvertently ended up in a brief written exchange with a board member and understood.

When I stated that efforts by legislative advocates, disability rights advocates, autistic legislative advocates, lawmakers, and parent advocates to mandate insurance reform began years prior to Autism Speaks' entrance into public policy, and what in fact Autism Speaks had done was co-opt those efforts, take them over, and then claim organizational victory when reform was passed, the reaction of the board member was swift and vicious. Not knowing what was coming, I followed with the statement that Autism Speaks had no autistic members on its board and no diversity either, except for a female celebrity. In response to this member's comment that autism was a spectrum that sometimes was just "quirks" to be accepted and embraced, but all too often it was a nonverbal child with serious behaviors who needed a great deal of help, I reacted by saying that my son was one of those nonspeaking children that he was presenting as tragic and outside of acceptance and embracing. I pointed out that as a woman of color,  I was part of a population that was similarly maligned and he might not want to imply that my son was not worthy of acceptance. His response to was attack me personally. He went as far as using a common stereotype, saying that I attacked everything real or imagined, implying I was just the angry Black woman. He clearly has never read my blog.  Remember what I said earlier? If you feel you are losing a debate, never fall to personal attacks. In this case, the exercise of attacking an Afro Latina autism parent advocate served no purpose but to silence by insult. Hopefully this was not an example of how other board members or Autism Speaks itself handles criticism of its methods or shortcomings in its organization. In order to threaten and demean "woman of color" was placed in quotes in his response. Apparently my race, in his mind, does make me less than others and my son's degree of disability was not worth dealing with when not used as an excuse for appropriating my son's right be represented by his peers.

Right now people are saying in a very loud, unified voice, that Autism Speaks not speak for other autism nonprofits on what national autism policy should be. They are asking that Autism Speaks not speak for autistic people until it can show representation in the decision making levels of its organization, Not presenting autistic people and segregating them to projects and throwing funding at them. There is a difference gentle people. Demand more. "Don't be tempted by the shinny apple, don't you eat of the bitter fruit", as Tracy Chapman sings. Autism Speaks has a great deal of soul searching and homework to do. Here in summary is what I see as needing work:

1. Autistic Board Membership - There are great professional autistics who are wealthy, you know, like the rest of your board members. Find them
2. Diversity within the leadership and membership of the governing board: When I say "woman of color" I am being inclusive of all nonwhite racial groups. Autism Speaks has no Asian or indigenous  board members. I am also including ethnic minorities, I see no apparent Hispanic representation either. What about LGBTQ leadership? The present board membership does not reflect the population of members being supposedly spoken for.
3. Autism Speaks has no right to drive public policy on autism exclusive of other autism organizations, particularly those existing self advocacy organizations who truly are speaking for their members. (read more here)
4. It is time to  stop the tragedy model of fundraising. Stop using fear to raise funds too.
5. Autism Speaks should try dialog with those who have justifiable grievances against them rather than launching attacks on those who criticize the organization.

Although I am just a "woman of color" with a "nonverbal son needing a great deal of help", I continue to stand with autistic disability rights advocates, organizations and autism families demanding a sponsor boycott of Autism Speaks until these issues are addressed and resolved. Addressing the issue does not mean demanding those protesting on twitter have their accounts blocked, or using corporate strong arming to block protest. I continue to demand Autism Speaks respect parents of color and their nonspeaking autistic children.

Signed,

The "Woman of Color"