| 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.

Thursday, December 18, 2014

For God's Sake Stop Speaking

"Autism is forcing parents and caregivers to slow down the frenetic pace of our modern world and look into the eyes of our (autistic) loved ones…as Saint Francis did with the leper." Suzanne Wright Speaking At the Vatican

Dear Mrs. Wright,

I don't know you. We will never, ever meet. But I need to insist that you cease insulting my son and the children of millions of families by continually inflicting your frightening opinions of autism, autism families, the Wright brand of mandated policy for autism and your depressive views of what our lives are like on people each time your speak publicly. 

You and your husband have this huge platform and you use it to equate autistic children with people with Hansen disease? When I heard that part of your latest unfortunate speech I had a tough time keeping down my dinner. How dare you?  My son is not diseased. But you just keep on going there, don't you? For God's sake  STOP insulting my son and all his peers.

Apparently you also didn't know that no one uses the word leper and hasn't for years because it defines the person by their health condition. The appropriate term would be a person with Hansen disease. So you've managed to insult that entire community as well. 

Your insistence that your tragic ideas on how autism should be viewed, managed, and treated be forcibly imposed on every country in the world is frightening in its scope and ambition. The very loud horn of the autism apocalypse you keep blowing at the world is sad because there is so very much good you could do. I cannot grasp this hate filled fear mongering in someone who has a neurodivergent grandchild. I would think you would want to use every means at your disposal to insure the world accepts him and supports and accommodations are made for him to actively participate in every community. I can't help but wonder how he feels about a grandmother who speaks publicly about how difficult his existence is on his mother as you did in your previous unfortunate address to Washington.

 Because I spend a great deal of time with colleagues  like your grandson, I know that presuming a child with limited expressive speech has no understanding of what you are saying is a large mistake. The most important lesson to be learned from the story of Carly Fleischmann is that when she was able to type, she told her parents that she was subjected to years of them berating her while she was right there. She understood everything she saw on every media around her. She went through waves of self loathing because of it. That should have been enough of a wake up call for all of us with autistic children and loved ones. We should respect our loved ones, regardless of degree of visible disability, enough not to speak ill of them.  But you continue to be stuck in the concept of disability as a disease. Rather than fight for the accommodations,  and the furtherance of technologies needed to help make life more accessible for autistic children and adults, you bellow that autism, like the boogie man, is coming for all of us. If your opinion was not being forced upon us and if your comments did not constantly insult autistic people of all ages, I would say, everyone has an opinion. But you and your husband keep using your power and influence to dictate to the rest of the world how autism should be viewed and that puts statements like the vile thing you said in the quote above squarely in my business. It puts my son at risk by making him seem diseased. You don't dictate how my son's life should be lived. You don't have that right. Having a grandson with my son's neurology doesn't give you the right to insult autistic people either. 

Disability is the world's largest, and most maligned minority. Like so many pioneering parents and grandparents in the Down community, you could have lifted your grandson up. You could have led the way to life changing policies by standing by him and by trying to reach out to prominent autistic professionals in a real way, with respect. You could have joined with the entire autism community and sought points of policy on which everyone agreed. When Autism Speaks decided to try and dictate federal autism policy without regard to autistic advocates,  parents, other autism organizations, in fact anyone but yourselves, I assumed the backlash would make it clear that your personal opinions shouldn't drive an entire nonprofit no matter how much wealth and power you have because your mandating your distaste for what my son and his peers are is unacceptable to me and literally hundreds of other people. Instead, you are now involving the Catholic church and using your massive privilege to inflict the agenda you couldn't mandate in Washington on the world? Wow. 

By the way lighting public spaces blue neither informs nor aids my son or his peers at all. No amount of offensive puzzle pieces sold in too many different ways and shoved in my family's faces because our son is autistic helps either. 

Stop. Just STOP doing this. 

Autism organizations should be dedicated to greatly improving the  lives of Autistic people. They should not be dedicated to insulting them and demanding the obliteration of any variance in the genetic code that produces differences. That you see, is a slippery slope because everyone has an opinion on what should not exist. I know. I am a Black woman. And there are quite a few people out there who think I should be remade to conform to white people more. I don't need blonde hair. I need to be accepted for who I am and where discrimination exists, I need it recognized and dealt with. That is justice. Comparing autistic children to people with Hansen disease is just scary.

Your very loud, seizure inducing awareness campaigns are nothing to be applauded. They are actually harmful to autistic children and adults, you know the people you are supposed to be helping with these efforts.Truly helping would mean you doing the right things. Things like sitting down with your board and making some real decisions on how you can include autistic professionals as equal partners in your organization, so you can move forward without constantly insulting most of a community you insist you speak for. Do you have the kindness and ability to shun worldly wealth, power and pride as St. Francis did? It takes that kind of humility and courage to invite self advocacy organizations, disability rights organizations, and include other legitimate autism organizations in any policy making process before dictating policy and agendas to the world. 

It should never be implied in any way that people view their autistic loved ones the same way a Catholic saint viewed a person with Hansen disease. Parents and care providers aren't martyrs or saints. They are people whose job is to take care of their children. No autistic person should be viewed as a diseased or damaged person. You were busy dragging St. Francis into this. Wow. He would have been horrified. Shame on you. Shame on you.  

For God's sake, stop saying you are speaking for the entire autism community. You do not speak in the name my son or me or my friends and their children. Stop generalizing the misery of people who are unhappy and blame autism (when they need to look in the mirror).on us. Stop gaslighting autistic people and their families with this litany of derision and doom. 

For God's sake, STOP.

Saturday, November 29, 2014

Forced Migrations

Highway sign white letters on green field read You are now leaving
Greenbelt with yellow warning sign in yellow with black font
reading Exit Only
I thought I would be fighting the good fight until my autistic son was in an inclusive classroom. I thought I would be in historic Greenbelt, speaking out at the city council meetings, pushing for a better west Greenbelt community. We entertained the possibility of a move to the beautiful new town homes they were building  between the metro station and College Park. Nothing turned out as expected.

 2014 has been a year of failures and disappointments for me. I am exhausted. While efforts to improve a neighborhood on the verge of urban decay for a very long time have seen changes like new management, renovations and better maintenance,  the largest garden style community on the East Coast  is still the rough part of town. The retirees who raised their children there were forced out by 2012. Between 2007 and 2010. crime peaked and a series of fires caused by a combination of faulty wiring and arson burned out legacy residents. Stability has returned but it had come at great cost. My idea of building community ties there just wasn't going to work. Too many residents see west Greenbelt  as a hotel/transient lodging rather than a legitimate part of greater Greenbelt.

Mu with big sister at Greenbelt's Mother and Child Statue
The brand new wheelchair accessible middle school was not where they wanted our son to go. Four years of homeschooling later, no administrative attitudes had changed and the goal was simply to warehouse another nonspeaking autistic student. How would this one be made compliant? What was the risk to everyone else of any given placement? This was the only thing discussed. Under a veneer of feigned interest in our son's individual support needs, the only plan was segregating him away in a closed classroom environment and getting us under the yoke of special education hopelessness as quietly as possible. In the public school administration's view, autism parents, like nonspeaking students, should be compliant.

We are residents of Montgomery County now. I have very mixed emotions about moving. It was something I urged other parents in our former county not to do. At the time I truly believed that someone had to stay and fight for change. But things had reached a critical mass, and my husband realized, as many special needs families do, that migration towards better services is the only way to improve the quality of our children's lives.

Starting over sucks. There is no other way to put this. Moving with a neurodivergent young man is
Art Deco Styled Community Center, Greenbelt 
very stressful. You just don't know how he might react to leaving an area he's known since babyhood. He loved the Art Deco of the historic Greenbelt buildings, the throwback Mayberry RFD feel of the close knit small town in the middle of the beltway rush. It was always like stepping back in time in a good way. The Mother and Child Statue was his favorite place. And he loved the library and the the park in front of it.  I miss things about Greenbelt that are hard to explain if you haven't been there.  The Greenbelt Co-op supermarket and New Deal Cafe are among them.

Sign for New Deal Cafe, Greenbelt, MD
Mu and I haven't adjusted to the new neighborhood yet. We are strangers in a strange land. So I guess the historic Greenbelt nostalgia comes in part from that. But I'm also confronting a painful reality. Like increasing numbers of autism families we had to try and find some place where his needs would be met without the mountain of negative challenges constantly facing us in our old county. I miss Greenbelt, the New Deal town. I miss the light of understanding of where we were headed dawning on Mu quickly by the familiar turns in the road and the pedestrian crossings to buses,  the old town, the park or mall. I don't miss many more things however. I won't miss the obstinate need to retaliate for our speaking out to help our son, the ableism, in short the autism wars for inclusion. I won't miss the disparity in health care and education given him. I won't miss the presumption of incompetence that seemed standard fare for anyone considered  a foreign or non white parent.

I am taking each day as it comes. We are having a quiet holiday weekend with a convalescent Mu. The new home and neighborhood are lovely. Mu is transitioning well. We are working our way back to routines and the comforting patterns of everyday living.  The sadness of leaving a place I thought we would surely retire in will, in time, dissipate. Our family has become another data bit in the statistic of migrating families trying to make life better for their disabled children. Wish us luck.

More on Greenbelt can be found here

Saturday, November 8, 2014

Waiting For Allies Against Ableism

     "PHOTO ABOVE-LEFT: Olympic Project for Human Rights button, worn 
by activist athletes in the 1968 Olympic games, originally called for a boycott
of the 1968 Olympic Games. PHOTO ABOVE-RIGHT: This iconic photo
 appears in many U.S. history textbooks, stripped of the story of the planned
 boycott and demands, creating the appearance of a solitary act of defiance".-
From "If We Knew Our History" By the Zinn Education Project 

On October 17, 1968,  when I was 7 years old, the world watched the gold, silver, and bronze medalists in the 200 meters receive their medals and saw gold medalist Tommie Smith and bronze medalist John Carlos raise gloved fists in a silent act of protest against the continuing racial discrimination in the United States. Silver medalist Peter Norman joined them in wearing the Olympic Project For Human Rights (OPHR) badge and stood in solidarity with them as they protested, despite being white.  This protest, done to replace an unsuccessful attempt at a complete boycott of the 1968 Olympics by Black athletes, cost all three athletes their medals and their careers. It changed the course of their lives.

Peter Norman went home to Australia to jeers and was never allowed to represent his nation in his  sport again. He spent the rest of his life urging other athletes to protest human rights violations in countries hosting the games. Peter Norman was what an ally to a civil rights cause is supposed to be.

Probably the saddest thing for someone of my age, race, and background is to grow up in the times I did, see people like Peter Norman stand with Tommie Smith and John Carlos, then live to compare the way people appropriate, then misrepresent what an ally is today.

I have witnessed the incredible courage of people who didn't have to stand by oppressed and marginalized groups and did so at tremendous cost. What I see now is a far cry from that.

In the autism community, the word ally is sometimes seen as a feather in one's cap. The word is appropriated by people wanting to have a higher status and influence. They want the label, the photo ops, the awards and accolades of being an ally. They don't want to put forth effort or great risk in the name of a cause they believe in. They wear the label, like any other adornment, and show it off to others. They may be kind to those involved in the struggle but the kindness is an affectation of patronage rather than heartfelt kindness born of a friendship between equals. Having grasped at the label, they don't care at all that their function is to support disabled activists in achieving human rights for themselves and future generations. The label is an item off their checklist to fame.

 Calling a person an ally is a gift of trust bestowed by activists in any cause to those who truly understand their struggle and stand with them. In disability rights activism, that means amplifying the voices of disabled people and presuming they are competent to lead autonomous lives in mainstream communities. The presumption of competence is not just lip service. It must be apparent in an ally's actions and the way they live their lives with and around disabled people. Being an ally is not a label we get to hang on ourselves. It isn't something we earn after a certain time hanging out with disabled people. It isn't something we get for being good parents to our disabled children. We can't buy it by bestowing money on prominent disabled people. That make us donors,  philanthropists. It does not make us allies.

It takes belief in the cause of another, and unselfish, consistent demonstrations of support based on the belief in the idea that nothing about disabled people should happen without them. For the rest of our lives. We must be willing to step up and pay the cost necessary to stand with our disabled colleagues and our disabled loved ones. This is the only effort that will result in the recognition of our children as equals in society.

That is what I want. I want my son to be accepted, accommodated, supported in our community and every community. This is not a hobby or the honing of a personal brand. It isn't achieved by Instagram-selfies with well known activists or having tea with your federal lawmakers. Those who never toot their own horns, ask "what more can I do", and follow the lead of their disabled colleagues are allies.  Those who don't have the time for the constant updates of their accomplishments on social media because they are backing disabled activists impress me. Can you be invited to speak at any event and arrive, introduce yourself, and give the podium to a disabled activist to speak instead? That is an ally. If people don't know what your name is but your deeds stand out in the successes of your disabled colleagues, you are an ally. Anyone else can be called many things. They can be called benefactors, grantors, donors, friends, online activist parents, bloggers. They can't be called allies.

Maybe at some point, an autistic activist might label you an ally. That is an honor. But it doesn't make you less privileged than neurodivergent people.  Some people who hear that ally label think it means they can then treat disabled people any way they wish. Presumption of competence never means disregard for disability and the accommodations and supports needed to provide equality for a disabled activist to succeed in speaking out. The term "know your privilege" is thrown around too much on the internet. But the position of being a true ally makes that phrase very important. You don't get to silence disabled voices because you are an ally. You don't get to speak for neurodivergent people because you've been labeled an ally by anyone. That isn't the way it works. Getting that label means that even if you don't agree with what a neurodivergent person is saying or how they are  delivering that message you must fight for their right to be heard. You must also insure that you are not yourself discriminating against them  or your own loved ones. This meaning you must extend supports and accommodation and use your privilege to let those voices be heard. That was the culture of activism I grew up in.

Where has it gone? I don't see it very much now. I feel as if I'm waiting for Godot.

I have watched this inappropriate behavior. I am truly sad. What I see particularly in the autism community is people conflating being an ally with having power and privilege based on high status within the community. I see them immediately using that privilege to abuse the very disabled people they are supposed to be standing by. The damage that has been done by those who saw being an ally as medal to be won or a way of gaining insider information to deconstruct disability rights efforts is significant. In a time when people see themselves as brands and carefully Instagram every moment of their own lives, this tendency towards ally label appropriation and misuse is growing. I do not know of any way to counter this avarice for influence and attention. Such a thing may not be possible. But I feel obligated to speak up about it in the hope that once a thing is seen, it can be countered.

The most critical thing a person must know about being an ally is that allies are meant to be the supporting cast. Allies don't dictate, command, take the lead, drive the bus. Allies support. They do what Peter Norman did at the 1968 Olympics and for the rest of his life. Peter Norman did not follow with press conferences and selfies and discuss how those two men were able to protest because he was there or somehow crucial to them doing so. He wanted to support them. He did. He never considered making it about him. This is too rare in allies within the disability rights community. We conflate our status as parents with being allies and tend to want to boss and talk down to disabled activists.  This is wrong. It is ableist. It defeats efforts. It tires me to see this happening.

I wrote and spoke about the topic of allies against ableism as part of a panel organized by Lydia Brown you can read here. My initial solution to assisting people who want to understand what allies are and be better allies against ableism was to recommend Dr. John Raible's Checklist for Allies Against Racism . This checklist can be used to see if you are truly an ally against ableism by downloading it, modifying it and testing yourselves.  Replace the word racism with ableism, races with abilities and the phrase "people of color" with "neurodivergent people". Work on yourselves rather than presuming anything about being an ally. Then truly live as an ally. Do no harm. We are meant to be in the background of our disabled activist colleagues and loved ones and have their backs in this war for their human rights. We must use our privilege to help them reach the goal of justice beyond equality.

If you read all of the above and feel you have done harm, repair it as best you can and don't do it again. Begin again the right way.

Lastly remember that this is a fragile movement, and egos are a true threat to success. I don't wish to be this disappointed in people anymore. A half century is a long time to watch people go from Peter Norman to Greek mythology's Narcissus.


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.


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. 


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,


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.