| TIFFANY PINCKNEY 23, starved by her sister, 2005. | ZAIN AKHTER 12, Strangled by her mother, July 2010 . | AJIT SINGH 12, forced to drink bleach by his mother. February 2010 | BENJAMIN BARNHARD 13, shot by his mother, August 2011 | BETTY ANNE GAGNON 48. tortured to death by her sister and brother-in-law. November 2009 | CALISTA SPRINGER 16, smoke inhalation-chained to her bed by her father and stepmother, February 2008. | CHASE OGDEN 13, shot by his mother along with his sister Olivia, October 2010 | CHRISTOPHER DEGROOT 19, locked in apartment set on fire by bis parents, May 2006 . | CHRISTOPHER MELTON 18, gassed by his mother. June 2010 | DANIEL CORBY 4, drowned by his mother. March 2012 | FARYAAL AKHTER 2, strangled by their mother, July 2010 | FRANCECCA HARDWICK 18, locked in a burning car with her mother, October 2007 | GEORGE HODGINS 22. shot bv his mother, March 2012. | GERREN ISGRIG 6 years old, died of exposure after his grandmother abandoned him in a remote area, April 2010. | GLEN FREANEY 11, strangled by his mother. May 2010 | JEREMY BOSTICK 11, gassed by his father. September 2009 | JEREMY FRASER 9 years old, died of recurrent leukemia alter his mother withheld the medication that would have saved his life. March 2009 | JORI LIRETTE7, decapitated by his father, August 2011. | JULIE CIRELLA 8, poisoned by her mother. July 2011 | KARANDEEP ARORA 18, suffocated by his parents, October 2010. | KATIE MCCARRON 3 years old, suffocated by her mother. May 2006 | KENNETH HOLMES 12, shot by his mother. July 2010. | KYLE SNYDER 9, shot by grandmother, October 2010. | LAURA CUMMINGS 23, tortured to death by her mother and brother. January 2010 | LEOSHA BARNETT 17, starved to death by her mother and sister. May 2011 | Melissa Stoddard 11, tortured to death by her father and stepmother.December 2012 | Matthew Graville 27, tortured to death by his half brother, July 2012 | NAOMI HILL 4, drowned by her mother, November 2007 | NOE MEDINA JR. 7 months, thrown 4 stories by his mother, August 2011 | PAYTON ETTINGER 4, starved by his mother, May 2010 | PETER EITZEN 16. Stabbed by his mother. July 2009 | ROHIT SINGH 7, beaten to death by his father, September 2010. | ROBERT ETHAN SAYLOR 26, asphyxiation during catastrophic police encounter, January 2013 | RYLAN ROCHESTER 6 months old, suffocated by his mother because she believed him to be autistic, June 2010 | Paul Childs III 15, shot by police while holding a knife pointed at his own chest, July 2003 | SCARLETT CHEN 4 years old, drowned by her mother, July 2004 | CHRISTOPHER MELTON 18, gassed by his mother. June 2010 | STEVEN SIMPSON 18, doused with tanning oil and set on fire during his birthday party by party crashers, June 2012 | Steven Eugene Washington 27, shot in catastrophic police encounte. March 2010 | TONY KHOR 15, strangled by his mother, October 2009 | Torrance Cantrell 8, killed by church parishoners during a brutal exorcism, August 2003 | TRACY LATIMER 12 years old. gassed by her father, 1995. | WALTER KNOX HILDEBRAND JR 20 years old, died of a seizure induced by his brother's physical abuse. November 2009 | Alex Spourdalakis 14, stabbed to death by his mother and caregiver who premeditated his murder and also killed the cat, June 2013 |ZAHRA BAKER10, murdered and dismembered by her stepmother and perhaps her father. October 2010.ERNEST VASSELL10, shot in a catastrophic encounter with police. September 2011.

Monday, October 27, 2014

Disparity in Health Care: Malpractice, Euthanasia, and 60 Minutes' "Breeding Out Disease" Episode

My son is convalescing. He was very ill, he was in pain, and I was in an agony of grief. So heartbroken that my heart reacted and that sudden shortness of breath, that nausea, and the sharp chest pain that doubled me over happened.  I fought to collect myself, quickly, medicate, and be there for my son. I could not end up in a hospital as well.

Image is of Mu at a much younger age asleep in another ER hospital bed
It is the worst part of being a parent. The helplessness. The horror of watching your child suffer. For parents of disabled children, a large part of our lives are spent in hospitals. Our children, throughout their lives, have medical challenges that require we buck up and stand by them. I would bear my son's pain for him if that were possible. But he has a will to live that is more powerful than almost anyone I've met in my life. He's a fighter. So when these health crises happen and he's in that ER room bed, smiling weakly at me I smile back and say quietly " let's kick some ass son". He and I fight the power. He doesn't need to say a word. I see his will to live in his eyes, and in his quiet focus on silently managing the pain. It does not become me to fall apart in the face of such courage. Since I was given the honor of calling myself the mother of such a son I must join my will to his and show him I am with him. I must help overcome every obstacle with him and stand firm. That is the job.

I know that in global disability news, the current hot button topic is Charlotte Fitzmaurice, the UK mom who, along with her husband and the hospital caring for her daughter, Nancy Fitzmaurice, successfully won a lawsuit to end Nancy's life by starving her to death. When one removes a feeding tube from an individual who is unable to receive nourishment any other way they are starved to death. I'm sorry how is that humane? So many care providing people have starved their disabled children and adult siblings to death. It is a painful, horrid way to die. Those who did where sent to prison for it. How is it that a hospital setting and court order make this okay? We are going to inflict further terrible pain on this child because we want to free her from pain. WTH?

Something else that really bothered me about the way this story played out was a very critical point that no one spoke out about. London's Great Ormond Street Hospital was responsible for Nancy's round the clock care. A botched a routine operation left 12 year old Nancy screaming in agony. Then Great Ormond Street used their resources in a legal battle in the parents' names to end Nancy's life by removing her life support systems and nutrition. No one is asking the right question. Why would a hospital do this? Who was responsible for the botched surgery that brought Nancy to this point? Why were they not held to account for it?

I pray our son is never a victim of medical malpractice going forward. I believe if such a catastrophe occurred and we were offered this option of hospital endorsed legally approved starvation as some optional remedy for any harm done him I would listen for the Twilight Zone music in the background. This idea of ending the suffering of someone who can't tell you what they want and doing it so horrifically is freaking me out. Especially now, with Mu fresh out of the hospital.

He is my almost 12 year old, my youngest, and he is still recovering from being very ill. These health episodes terrify me, because in those moments his life depends on the professionalism of the medical institutions responsible for his care. Those people may decide his life is not worth fighting to for. His life has to mean just as much as the life of someone his age who has verbal speech and and ordinary brain. It cannot mean less because he is disabled. He is not less. He is our son. I want every effort made to help him be as healthy as possible. His divergent neurology should not be factored into the quality of his medical care and when medical institutions become involved in deciding whether or not to continue life support and nutrition for disabled children my son's age the world takes on a nightmare quality that doesn't require Halloween costuming and creepy music.

The tragedy of Nancy Fitzmaurice's death was compounded by Sunday's 60 Minutes broadcast entitled "Breeding Out Disease", presenting the idea that wealthy people are now able to pay to have their DNA scrubbed clean of pesky undesired cancers and things and then have perfect, made to order, babies. It jacked that creepiness up to haunted house on steroids levels. So much like the Hitler youth program. Or Star Treks' Wrath of Khan "we are superior because we are genetically engineered to be so" tripe.  Just who defines what we "breed out". Oh and the patent for this was acquired by a doctor who will charge a crap ton of cash to do what is necessary to provide this service. There are so many ethics concerns here. So much can go wrong it would take a series of blog posts to explain.

Meanwhile, my boy is recovering from being ill. We went to the ER and they understood him. They didn't force the blood pressure sleeve on him, they asked him. When discussing how he was, they spoke directly to him, even when he did not respond. Then they spoke to us and when we were done they tried their best to explain to him what they needed to do. Each person said goodbye to him and shook his hand. The doctor remembered another ER visit long ago, when Mu was much younger and remarked to him that it was nice to see him giving his mother a hug to calm her down. They treated him like a human being whose life mattered. I don't know that we will hit the kind humane hospital staff lottery again. It is chance after all. Ableism does not ask permission to infest your life.

 Two points of human rights violations in the ghastly euthanasia issue are the questions around consent without outside pressure when the patient is disabled or cannot indicate consent, and the idea that most of what is labeled mercy killing of late is killing, with pain and horribly, then the perpetrator using the victim's disability as an excuse to say "it was an act of mercy" afterwards. Imagine a policeman shooting a Black teen and saying "It was a mercy killing." "I did it because I knew he would live in pain and poverty all his life, and I wanted to spare him." Now replace Black with disabled.

When we are all arguing about these topics, I hope we remember that the person whose life was decided without her say was Nancy Fitzmaurice. She was 12 years old. She was the victim of a routine surgery that was botched and resulted in her suffering greatly. This suffering was not a result of her disability. It was the result of medical malpractice. This hospital has taken a large step into fright night going to court for parents in order to justify depriving a patient of nourishment until she died of starvation.

Lastly, rich folk trying to pay some dude to "scrub" their DNA of cancer, disabilities and such? Yeah. I don't see that ending well. We are talking about the same professional community that botched a routine surgery and then decided the fix was starving the patient, a child, to death.

Happy Halloween my people. No need to walk the dead. Fear is here. Hug your loved ones a bit tighter this week.




Sunday, October 19, 2014

On Boundaries, Privacy, Activism and Family (My Son is Not An Activist)

"When an man lies, he murders a part of the world" 
                                                                       - Merlin
                                                                                                  from the Movie Excalibur

Something negative has been floating around awhile now. A festering, pustulant bit of gossip that finally spewed out into the open during an advocacy related phone conversation I was having last month. I'd heard hints about it, but it had never been said to my face. The person on the phone decided to blurt it out."...since you are shut in, you know a recluse...I mean you only want to meet on the phone." Out it oozed all over the Verizon fiber optic cables. The person continued speaking but I was stuck in that moment.

Don't presume to call me a shut in because I think my son is a higher priority than your personal convenience or organizational agenda. That nasty little attempt at needling me into reacting to prove I was not whatever negative adjective was being ascribed to me shut down any further volunteer efforts from me for that individual. But it also highlighted something I've needed to say for a very long time.

Let me be clear. In the hierarchy of priorities my neurodivergent son comes before any legislative advocacy. He comes before any nonprofit organization. He comes before meeting the President of the United States. If I need to be somewhere and Mu isn't feeling it I reschedule. I will not drag him to any protest, rally, workshop, meeting he doesn't wish to go to. Nor do I expect him to sit through some activity he doesn't want to sit through. I only have so much life left and the lion's share of the time I have belongs to my autistic son, his father, and his sister. My husband and I made a joint decision at very high cost to ourselves that I would cease working when we realized Mu's sleep cycle and school troubles were not going to simply end. What is more important is something I suspected but now know for certain: Mustafa is not interested in activism.  Knowing that, I have spent the past three months in particular changing what he does  and scheduling things related to activism based on his indications of what he wants to do. Because he wants to have an autonomous life, and his life should not involve being forced to be a sidekick in my activism.

Mu in his 'fro phase with his favorite t-shirt at his computer
in our old house. the shirt is white with the words "Stand Against
Restraints and Seclusion by Teachers" t-shirt by autistic
activist Lydia Brown. Photo ©Kerima Cevik
See my life in advocacy is and was always meant to be an ally's life. I was meant to be my son's sidekick. That concept expanded when I realized the only true way of making my son's life better was to make life better for all of his peers as well. So when a member of Mu's neurotribe speaks, I shut up. If I want to say something and a neurodivergent person has already said it I amplify and signal boost, step out of the spotlight and work to place the light on them. My activism is not for self promotion. It is for Mu. So if he doesn't want to go to D.C./Annapolis/ Baltimore/UMD, or wherever, people and the organizations they represent either Skype a meeting, call me or do without me. That is the way it is. Anyone wanting any contribution from me should respect that boundary. Once crossed I will shut them down and drop them like a bad habit. That applies regardless of their station in life or how famous they are.

On gossip. We are all too old for this. When someone gossips consider two things that we were all taught as children. First consider that if that person is saying something nasty about me, they will also say something nasty about you the minute your back is turned. Second, a bit of gossip is a thing that functions very much as it does in the children's game "gossip". It gets more inaccurate each time it is repeated. So not repeating negative things helps eradicate an insidious ever expanding lie that is a threat to unity in activist communities. I am not sure why how I live my life is of any concern to anyone. I am a bit shocked that others would see this as an important enough topic to use it to disparage me. I guess I need to remind them that I am simply a parent, activist and blogger. And if they miss the point that this is about the human rights of our children, and not about me, let me hammer that home.

I am part of  the true Autism Wars, a larger series of wars for the human rights of our children.  These battles are being waged for equality expressed in acceptance, representation, and full inclusion in society through accommodation and supports for neurodivergent people throughout their lives. I want to see the day when the standard for educating all children is true inclusion regardless of degree of disability, support and accommodation needs. I want to see the day when my son's divergence doesn't matter.That is what this is about and what I am about as an activist. My son is important. My sitting on a board of directors is not. My son's peers are important. My speaking to adoring crowds is not. Those activists who fight for their neurotribe members matter. My job is not to photo op with them it is to have their backs. I don't keep track of what I do. I don't have someone who chronicles the speeches, good deeds, printed words and further charities of Kerima. So I'm not certain I'll be invited to speak at your next conference. If you get that about me, we'll get along fine.

I also need to remind people that activism can easily consume a person's life. I cannot allow it to do so to mine, because that would steal my son's birthright to his mother's time to love and support him. I must always fulfill my obligations as a wife and mother and friend first. If you didn't get all that let me sum up. 1. My son comes first. Respect that or don't engage me. 2. He is the reason I blog and I am an activist. 3. Trash me to hell and back it only diminishes you. 4. If I have an obligation, event, or commitment and my son has an issue I don't go. We have learned to be flexible because our son has multiple disabilities and if he is reticent to go it means he's trying to tell us he's not feeling well or something is amiss. 5. It doesn't become us to propagate gossip or make presumptions about others. We need every member of this community to work together and this behavior is deceitful and destructive.

Based on years of attempting to work with organizations who don't respect what I'm about, and who my son and I are, I am seriously considering stepping back further.

Peace.










Saturday, October 11, 2014

The Matt and Isabelle Stapleton Open Letter Project

I am tired of the fascination many in our country have with the perpetrators of murder and attempted murder. This fascination is disturbing and when the victim is disabled,  habitually serves to completely erase them from the story of their own lives. The effort victims who survive make to recover should not be ignored because they are disabled.

I am therefore offering an alternative to the opportunistic behavior of attention seeking blogger parents wishing to twist the attempted murder of Isabelle Stapleton into some sort of sick platform to complain about their lives and vicariously publicize threats to harm their own disabled children.

I am writing to counter that blogging traffic, although I doubt it will catch on. I do not feel it is right to promote the name of an attempted murderer, no matter how upset I am that autism mothers who support this woman are generalizing and presenting their personal poisonous opinions as if all autism parents share them. I am also doing this to counter Phil Mcgraw using a tragedy to drive his show ratings up by othering the disabled victim and giving a confessed premeditated murderer a platform to justify her actions.

 Here are my letters to Isabelle and her father Matt. I have no idea if this will fit under a flashblog hashtag. This is best I can do.

Dear Mr. Stapleton,

First of all let me express my deepest sympathy for the tragedy your family has weathered and wish the best for you and your children. I was amazed and happy to see Isabelle’s progress in a youtube video that you were kind enough to post publicly. Thank you for that glimpse into Isabelle we were not really allowed to see before this catastrophe took place.

I know it is not my business, but in light of recent spates of autism mom blogging in support of your ex wife and her recent appearance on the Dr. Phil Show, I would like to ask a favor. I would like to ask that you consider securing legal representation for your daughter Isabelle and having that law firm or attorney sue to insure your ex wife does not continue to benefit from your daughter’s name, her attempted murder of Issy, Isabelle’s autism label, or any past care providing or contact with your daughter. I believe any attempt at publishing or making further television appearances, blogging, or making any media contact must be included in such a suit. 

I am asking because I am also called an autism mom, and I am offended by each and every mother who is presenting your ex-wife as the standard bearer for autism moms in general. I have no desire to be seen as someone who views my son’s autism as your ex-wife viewed her daughter’s autism. I do not give any other autism mom permission to make sweeping generalizations about me or my son. My son is medically classified as nonverbal. Like Isabelle, he has overcome great challenges and survived. He may need help all his life but it is my honor and privilege to be one of those who provides that help. He is not perfect. He has difficult moments. But he is always my autistic son, and I am proud of the way he deals with his difficult days and his good ones. Your ex wife doesn’t have a right to continue having a platform to defame my son and your daughter by generalizing private experiences into public thoughts. She lost that right when she chose to try and kill Isabelle.  Many autistic children are being bullied to the point of torture because of these statements, made thoughtlessly and selfishly by mothers unhappy with their situations and this needs to stop before more innocent children are harmed. 

Maybe you’ll read this and consider my request. You have taken over a family as a single parent and while I don’t agree with your support of Autism Speaks, I see you are doing all you can to help all your children move past this and make Isabelle certain that she is a wanted part of your family. I realize that litigation will bring up painful memories. But I also believe many attorneys would be willing to help pro bono.

Lastly I hope you do not make the mistake your ex wife did and anthropomorphize autism into the catchall evil neurological whipping post because that makes your daughter an object of hate. None of us want to see Isabelle victimized again. 

Sincerely 

Kerima Çevik
Mother of the Great and Powerful Mustafa, age 11, Autistic

Dear Isabelle,

I have wanted to write you for a very long time. I wanted to tell you how sorry I was to read about all the awful things that happened to you. Your mother should not have done the things she did to you. She was wrong. Nothing that happened to you was your fault. Please believe that.

 I have a son in your neurotribe. He is autistic and he is learning to type to communicate. He’s eleven years old right now. When he was four, we were told he was autistic. That day a great many negative things were said about our son. We were told we should be afraid of him, especially when he got older. Guess what? He’s now officially taller than I am. He is strong. I know because when I fell one day he grabbed my arm and caught me! But he is nothing like anyone said he would be. His dad and I are so glad we didn’t listen to them. We searched until we found a whole world of autistic adults. They helped us understand our son by telling us about their own lives and mistakes made to them so that we would not make the same mistakes with him. 

I am writing to tell you that I have a gift for you. I know you are fifteen now. When you and your family are ready, my gift to you is a open invitation to publish anything you want to write on my blog. The intellectual property rights to whatever you write will remain with you. I want you to know how important you are to autistic people. I also want you to know that parents exist who believe in their autistic children, as your father and family believe in you. We are here when you need our support. Just feel better, and take care of yourself. 

You have an army of friends here in internet land. We love you and want to support you speaking out in your own voice about anything you want and being heard. 

Best wishes,

Kerima


Friday, October 10, 2014

One Rose From A Friend

I need to begin this with a poem, translation below, and a brief story, so bear with me: 

Şu kanlı zalimin ettiği işler
Şu kanlı zalimin ettiği işler
Garip bülbül gibi zareyler beni
Yağmur gibi yağar başıma taşlar
Dostun bir tek gülü yaralar beni.

Pir Sultan Abdalım can göğe ağmaz
Haktan emrolmazsa ırahmet yağmaz
Şu ellerin taşı hiç bana değmez
İlle dostun gülü yaralar beni


The Deeds That Bloodthirsty Tyrant Has Done
The deeds that bloodthirsty tyrant has done
Make me cry like a destitute nightingale
The stones pour on my head like rain 
Yet It’s that one rose from a friend that hurts

I’m Pir Sultan Abdal: the soul doesn’t float up to the sky
Nor does it rain, unless the Almighty commands.
That stone from the strangers doesn’t even touch me, 
Yet It’s that one rose from the friend that wounds 


The above is the last poem Pir Sultan recited before he was murdered by order of his former disciple, Hizir Paşa, who had been sent west to the Ottoman Empire to treat for peace and understanding but was eventually bought off and returned to murder the man who harbored and taught him.
Image is of a statue depicting  Pir Sultan Abdal Holding a
Saz with hands open to the sky a disciple plays a saz at his feet.
The poem speaks to the final events in Pir Sultan's life, when Hizir ordered the public to stone him as he was marched through the streets towards the gallows tree. Strangers in fear of their lives threw stones, but none appeared to harm Pir Sultan. Then a lifetime friend of Pir Sultan's, in fear of Hizir, but ashamed of himself, threw a rose instead. That rose hit Pir Sultan and opened a cut on his face that began to bleed. At which point he was said to recite the poem that appears in part above.

İlle dostun gülü yaralar beni
Yet it's the friend's rose that wounds me

Something's been done to a respected activist in our community that has caused a rift. It is a major insult. She has been silenced. Banned from a community site that was supposed to be place where autistics could speak and be heard. For details click these links: 

In better times, The Thinking Person's Guide to Autism did a great many brave  and community building things. It was ahead of its time.  If anyone Googled "Kassiane Sibley Thinking Person's Guide to Autism", what they would see among the links is one entitled "TPGA Welcomes Five New Affiliate Editors" (my link uses donotlink just mouse over the title and click). Kassiane stayed with TPGA longer than I did, she worked harder at trying to educate, understand and build a bridge that might lead to parent and autistic activists working cooperatively.  She tried to fight from a position that was never intended to make her an equal editing partner. It was a position of less weight than that of the original editors. She was erased, and is not even listed among the former editors  on the blog's about page. And now, friends, self described autistic allies, have thrown the last painful rose. After a protracted argument on social media they allowed parents who made truly offensive comments to remain members of the community while banning Kassiane from it for doing her job as an activist and advocate for autistic children. 

 I'm not certain why this was necessary.  What an adversary she must be, this diminutive neurodivergent woman. I am so very sad for them. They have clearly never understood what it means to ally to a cause or to support an activist's right to speak truth to power. If you are Kassiane Sibley's friend you know her well enough to know her history, who she is in this community, and what her purpose and method of advocacy are. Whatever the case, taking a series of actions that attempt to obliterate her voice with parental, socio economic, and racial privilege is not what a friend does. It is the kind of behavior we see in Autism Speaks, not TPGA. 

Pir Sultan fought tyranny with a stringed instrument and love poetry. He refused to be silent, even as they hung him. Martin Luther King was arrested 30 times, and was in fear of his life during his incarceration but he refused to be silent.  El-Hajj Malik El-Shabazz, aka Malcolm X, decided to file a protest against the United States with the United Nations because he believed that the depth of  suffering in the black man's condition in America was a human rights issue equal to apartheid and beyond the scope of the U.S. government to overcome legislatively or judicially. He did this  knowing he would not survive to see any such effort through to it's conclusion.  Banning a hero of the autism rights movement from TPGA's community site will not stop her from doing her job. It will simply make that community no different from other parent dominated online communities where autistic voices are muted or silent.

I am a blunt, rude, pushy, stubborn, activist. I'm over 50 years old and not in great health. I don't have time to be ingratiating, politically pleasant, diplomatic, or kind about matters of  right, wrong,  life and death. Placating and doing less confrontational activism for good media optics or to further my own place in the community will not keep autistic children from dying. My job is not to be popular. It is move in solidarity with  my neurodivergent colleagues and let their voices be heard. Kassiane Sibley is my colleague and my friend. She is a passionate, demanding activist. Maybe everyone doesn't have the stomach for our style of activism. But it is needed because change doesn't happen quietly kissing autism parental ass in the background. It happens when people open their mouths and push back for what's right understanding that others might "feel unsafe" and that their discomfort may get an activist banned, arrested, or shot.  


Kassiane Sibley continues to push, correct, demand and not back down. She will be "rude", stubborn and she will make parents who insult their children feel uncomfortable. She might make others feel embarrassed because she really doesn't care who you are or who you have a selfie with or how many books you've published. Did you screw up? Is the potential harm to the community of your screw up such that if you are not warned damage can ripple outward to autistic children? Then bend over she will kick your ass. Because she is fighting for the human rights of autistic children and that is more important than uncomfortable people. She fights for my son and his peers and doesn't consider herself separate or better than they are. She fights for my son because she is also multiracial  and knows what it means to live life as a neurodivergent POC . 

The difficulty TPGA has had in working with, listening to, and respecting Kassiane Sibley says a great deal about a problem I have not been shouting loudly enough about for a very long time. The autism conversation is dominated by wealthy white privilege, clueless about the rest of the population, bemoaning lack of services when they have no idea what that concept truly means for autistic adults trying to make ends meet or children trying to grow up in poverty, abused by peers and caregivers who are told it is okay to hate and harm their neurodivergent kin. The human rights of autistic people only matter to these privileged folk when their children have been harmed, and they only remain to fight long enough to secure a safer outcome for their own. Once they have what they want, human rights be damned. I wish there were a hundred Kassiane Sibleys.  We need more of them. Activists of her ilk are under constant assault and burn out. 

I am a parent. I support Kassiane Sibley. Silencing her by banning her means silencing all of those she represents. She never claimed to speak for all autistics. But my son and I believe she speaks for him. That means TPGA is boycotted by my family and anyone who wishes to support a leader in the fight for the human rights of autistic children.

TPGA were supposed to be friends. They called themselves allies. Friends should not throw so much as a rose at their true friends. A rose, once thrown in fear by a friend, wounds in a way no stones thrown by an enemy can.



Thursday, September 11, 2014

Happy Birthday Nuri

Interesting fact about my husband. The name Nuri comes from the root nur which means light. Yesterday was his birthday, and just as he was ending a late night of working Tuesday he was closing browser windows and I noticed his Chrome browser looked like this:

Image description: the word Google spelled in cake and cupcakes with candles on them against a white background. A small white pointer shaped like a tiny white hand is hovering over the word and under the hand is displayed the words "Happy Birthday Nuri!" in gray print on a white rectangular background bordered in gray.
 It was a perfect, subtle, and geeky way to start a day of remembrance for his light, and celebration of the gift he is to us. Of course most of you don't know Nuri so I will only say that I know very few fathers like him. When you choose to love someone, you rarely stop and say "now what kind of a father would he make?" You only feel intensely, and if you are like me, you sit in daily amazement of your luck. It certainly wasn't something I expected. If a fortune teller had said to me when I was young that I would marry anyone I would have laughed myself to tears. That was not really the plan. If I had been told that I would find someone so devoted to his spouse and children I would have shaken my head in serious doubt. That sort of thing is a bit of a relationship miracle. Relationships take hard work, and that is not helped along by life. To help you feel contextually what I mean, let me relate a real life example of two marriages.

I met two Turkish sisters, one two years older than the other, halfway around the world. These two pretty sisters had met two American military men in a nightclub and they each married those men. The younger one happily married an army sergeant and they raised two lovely daughters. The older sister married a dashing officer and they moved back to the U.S. She thought she was living a dream life with a fairy tale ending in Texas.  One day she and her husband were driving back from a trip when another vehicle blindsided theirs. She woke up two weeks later in a hospital room unable to move. Her husband had been released from the hospital a week earlier with minor injuries and was standing in her room. A team of doctors was discussing what kind of quality of life she would have. They told him one leg would be shorter than the other. She would require several more surgeries. She  would need to learn to walk again. They did not know what her brain function would be. Certainly the internal damage combined with a shattered hip meant she could never bear children. She heard it all of course. She was in traction but awake. Her hearing was working perfectly. Her lead surgeon said that she would need her husband to support her through the next 2 years of physical and occupational therapy. They told him he could speak to her but only briefly. He walked to her bedside and told her he "couldn't handle this". Her dashing officer walked out of her room, the hospital, and her life. She was left to face two years of grueling recovery work on her own, in a foreign country, with no family around her.

Life is like that. Things happen. It is not about what happens, it is whether the person you choose to walk through life with will be there and stand by you through those challenges. My dear friend, who I'll call Leila, fought through surgeries and PT and OT, she called her sister and her American brother in law who were by then stationed in Germany, and told them what happened, and that she was alone. They tried to help as much as they could. She learned to use her new leg, a walker, her metal hip. She went back to school, got a GED, and didn't stop until she had a Masters degree. She studied until she became a naturalized U.S. citizen. She met a man, an American who was an African American PhD and both faculty at a university and consultant for the U.N. When I last saw her she was incredibly happy and they were moving to London. He had never met her before her life changed. He knew her as she was and loved her as she was. She told me she finally realized that her first husband had never accepted her. She just hadn't realized who she really was until she acquired a disabled label.

So now back to light, and my Nuri, and his birthday. When I met him, I was losing my sight again but didn't know why. I later learned there was what appeared to be a tumor under my forebrain. I was in Panama at the time with my birth father. What Nuri said to me was to come home, meaning come back to Turkey. He would find the best damn neurosurgeon in the world but I wasn't going to give up we were in this together. So I stood there, in my quarters at my father's home remembering Leila and the story of her life. I went back to Turkey. Nuri insisted on keeping me linked to life. We married quietly and beautifully against my protestations that I would be a burden on him in the end. He said we would live a lovely life in Istanbul and laugh and I would wake up hearing the sea every day. He built a database of the information I needed to access daily and added a text to speech widget on my computer. We lived in Istanbul and were very happy until September 11, 2001.

On Mu's diagnosis day Nuri hugged our son. He was overwhelmed. Time marched on. There was no discussion of  "not handling it". There was only "how can we work together for Mu's future?" "Our son, should have a future. He should be happy." He watched his son, whose middle name is also light, make progress they said was impossible and he slowly moved us into life again.

 Yesterday, Mu was doing an occupy protest in our bedroom in order to avoid bedtime. He was on his back on our carpet absently blowing notes on his harmonica. Nuri saw him as he was walking past our room to his home office.

"Hey son!" he called, smiling.
"Hey dude!" Mustafa answered.
Shock. We were in shock.
We are never sure when he has these moments of verbal speech that we aren't hearing things. Nuri ran into our room. Mu smiled and gestured that this might be a good time for his father to tickle him.

What a gift he chose for his father's birthday. That young man knows when and how to blow us away.

Sometimes I feel the joy a person feels when the sun is on their face and it shines so bright and warmly tears stream down.

Light upon light, glowing infinitely.

Happy Birthday Nuri, my heart. How lucky am I?




Tuesday, August 26, 2014

Why Autism Training for Law Enforcement Doesn't Work

In the aftermath of events in Ferguson, many Black autism moms are giving voice to their fears for their sons. NPR published an article about the Autism Society of Los Angeles teaming with the Los Angeles police department sponsoring a training seminar organized by autism mother and special education teacher Emily Iland for autistics, to teach them about dealing with Law enforcement and to familiarize law enforcement officers with autism and also aired it on a broadcast which you can reach here.    

Now I need to explain that the Denver police officer who shot 15 year old Black autistic teen Paul Childs III,  had not only received autism training but knew Paul personally and had returned him home just a few days before, when Paul had experienced a severe seizure and wandered off, disoriented. Paul trusted the police officer who shot him to death in front of his mother.

Stephon Watts was shot by a Chicago police officer who had also received autism training. The police officer had arrived at the scene with his partner and ample backup, knew Stephon, and was fully aware that Stephon was not a threat. The officer who shot Stephon Watts, his partner, and other officers on the scene also had tasers. No one bothered to use them. So much for autism training. I learned this painful lesson firsthand when despite my efforts in first responder training in Maryland, Robert "Ethan" Saylor, a young man with Down Syndrome was killed by off duty policemen refusing to listen when told he had a behavioral protocol in place and his mother was on the way. Only after this death did people take this issue seriously. 

Reginald "Neli" Latson was trained in how to manage a police encounter. His behavior was entirely correct. Unfortunately no one taught Neli how to handle an individual policeman who was off duty and refused to believe Neli was not a threat. In 2013 Neli threatened self harm because of what was happening to him at the group home where he was to serve out a 20 year sentence and police were called. He is now facing a return to a hellish prison existence, and he doesn't know what he did wrong in the first place. Another awful wrongful call, another disastrous encounter with police, and Neli's life, which was already ruined is doomed. Out of the media's view, Neli will be returned to an unjustly harsh prison sentence for being autistic and Black. 

No police officers involved in the two deadly shootings lost their jobs. The officer who shot Paul Childs was promoted. 

Unless this type of encounter has happened to you, you will not be able to understand what occurs. Dave Chappelle used such encounters and compared them to police encounters he witnessed between white friends and police in his stand up routines for a reason. Everyone of us, nearly all people of color are at risk for this. But we don't have the additional challenge of possibly not being able to speak or behave in a "normal" manner at that moment when speech is being demanded by officers who may or may not have the best intentions towards us.  The Washington Post had a recent blog post that directly asked the question " Why do police see a person's disability as a provocation?"  Training doesn't cover attitudinal injustices. 


So why were Paul Childs and Stephon Watts shot by police who were trained to understand and deal with them knew them personally and had helped them in the past? Why did Neli Latson's "training" fail? Why do I think the Los Angeles approach won't work? First, police in whatever they perceive to be a crisis situation will always fall back on their basic training. So where autism training would require they calm and deescalate the situation, police will not think in an counterintuitive fashion and they will escalate automatically based upon cues they are trained to react to with aggression in the academy. If they perceive rightly or wrongly that their target is holding anything they will treat the disabled person like a suspect and anyone near them like a hostage. In short, autism training is counterintuitive to police training.

The example given by NPR of the police training seminar for autistic students is typical of parent driven training. It tries to train the autistic consumer while excluding them from the creation of the training protocols and curriculum. This demands the autistic person, who may be overwhelmed and in a traumatized state, "behave appropriately" and recognize law enforcement is not a threat. Another issue here is that many autism related 911 calls are misplaced and being made for the wrong reasons. These are medical or mental health crisis calls rather than calls for police backup. Families should no longer be told by anyone that fast tracking their grown male children into group homes can only happen if there is documented proof that the individual is a danger to himself or others because what follows is parents using 911 calls to establish a paper trail to justify sending their young men off to a group home. These  actions often end in tragedy.

You can't train away racism or ableism. Understand that. What we need to look for are paths to reduce creating situations where these encounters take place meaning exploring solutions like a crisis team response group of medical, mental health, and autism professionals which would only include law enforcement (armed with a taser NOT a gun) if abuse of the disabled person or the threat of harm is truly imminent. All strategies need to be inclusive of autistic disability rights activists because they are both directly impacted by whatever training strategies, policies, or actions happen in their name, and they know what training and delivery methods will work best for their peers. 

I ceased pursuing a route of training law enforcement after the death of Robert Ethan Saylor, which happened a year after Maryland implemented the regulatory training solution as an alternative to the bill I asked to be introduced and tried to pass. It was a bitter pill.  I sat in a room full of stakeholders unable to fight back tears the year before, saying that the next time we all met it would be in the aftermath of a death because we had the chance to avert such a disaster in our state and it didn't fight for it enough. I don't know why it takes young people dying to drive legislative change on issues like this. But I realize now that such changes wouldn't have mattered and I was going in the wrong direction with this. We need to understand hate against the black body, hate against disability, and base solutions that save lives on how to overcome these things. 

My son's life, and the lives of too many others depend on us finding a better solution to this issue. Such a solution can only be arrived at by including his neurodivergent peers as stakeholders. Some policeman talking down to a room full of nearly grown neurodivergent men telling them "never touch a policeman's gun" when most autistic men who have been shot dead are shot from a distance not nearly close enough to see a policeman's gun, much less reach for it, shows the canyon divide that exists here. It is time we stop doing things about autistics without them. Stop doing things at them. We can't continue to bury our own sons. 

Peace. 


Friday, June 20, 2014

Dear Mustafa, We Are Brothers

 "Hi brother Mustafa we are brothers . I am here...."
-Henry Frost


I read that quote, part of an emailed message to my son, and did not notice for a good while that I was crying. I sat silently thinking, "Mu will want to frame this" then the tears impaired my vision. The respect, the understanding, the extension of the hand of friendship; it just overwhelmed us. I did not expect it. Help, even moral support, is not something we ever expect.

Four years ago, when I decided to homeschool Mustafa and search for as many adults like him as I could in an attempt to understand him and help him, I didn't foresee that such a young autistic person would think or worry about what was happening to my son. We were still being told that autistics and empathy didn't mix. We were assured other autistics wouldn't understand what my son was going through enough to type those words. I didn't realize how many autistics communicated the way my son is learning to communicate. I just wasn't given any expectation that I could even speak to autistic adults directly or that they would care enough about what might happen to my son to answer.

Mu has not been himself. The assessments have saddening him. The way they spoke of him while he was right there, no matter what we did to avert, warn,  and scold them or remove him from their voices, he heard it.  Hearing the litany of his presumed deficiencies and suffering the humiliation but not being able to defend against the ableism were breaking him down. The dislike of him as a person and a student who cannot simply be taught on a canned curriculum with half-hearted effort was apparent and it was becoming unbearable. We tried to help him weather this privately. Then suddenly, Henry wrote.

Henry understood everything Mu was going through. It made me realize autistic kids should be writing one another. This was how this great movement toward community began for autistics a generation ago. Maybe it is time for an "autistic big brothers/big sisters" writing project now. Who better to let our older kids know it will be okay? They have gone through these terrible humiliating processes and survived to live another day.

No matter what hell I think I'm going through sitting alone in an adversarial environment with at least 7 other people all talking at the same time, sometimes gaslighting, sometimes skewing what was said, other times saving up parental sentences to serve their own purposes, Mu will always have it worse. He will be eternally underrated and forever measured by how compliant he is rather than his capacity to learn.

So I am wondering if all of the autistic adults and young adults out there can help Mustafa and the younger generation by starting a safe space and posting public letters to them. Build a kind of bulletin board for autistic kids to read letters of support, solidarity, and encouragement on all those topics that need someone just like them who cares. Let them know others went through it and there is a light at the end of of the avalanche of others presuming their incompetence.

That light is understanding and friendship from their brothers and sisters in neurology.

Long live the neurotribes

Peace.