| 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, January 15, 2015

Neurodivergence and Representation: People Maps and Farewells II

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follows now is an adaptation of a Facebook note entitled "The Year In Hope", the last of the series I posted on my now unpublished personal activist's page, because I think it says more of what I wanted to say here and I have too much to say.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

Before the debacle of Facebook's year recapping app forcing users to remember traumatic events of 2014, Facebook had their app for grabbing photos and recapping the timeline year active again. 2014 was a year I don't really wish to recap. The cost in lives of disabled children and the human rights
Ariane Zurcher, writer, speaker, artist,
activist, mother  and ally of Emma
Zurcher-Long. Ariane embodies the
community building autism parent by
tackling tough topics and giving the podium
to her daughter to speak out about
nonspeaking autism and representation


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

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

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

Adriana is a living example that highly
ethical, highly qualified care givers
can be allies against ableism in the truest sense.
With Adriana's dedicated support, Amy Sequenzia
 is able to balance a busy life of activism with
self care and engaging our community
fully.
 Without deconstruction of falsehood, change is not possible. Without criticism (even of those who
may be somewhat beneficial to causes but are flawed in a way that damages in the long run) there is no moving forward. If we are afraid to call people and organizations out when they display shortcomings that have the long term potential to harm progress towards justice and equality inclusive of all, then what we live in is  no longer a democracy and we are all lost.

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

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

 My hope is that whether I am an activist or not, our community takes on the critical task of deconstructing the emotional contagion of these negative content generating organizations and groups.We should be teaching everyone to recognize the signs of clinical parental depression, emergent dangerous thoughts,  unstable emotional states due to chronic sleep deprivation. We need to spot the red flags apparent in certain parent support groups and keep them from instigating harmful behavior towards disabled people.  I pray everyone understands this and if groups are anyone's forte, they begin a wider grassroots building of groups that make it clear that our present views on disability in general and autism in particular are being imposed upon us and what we need to do is begin with understanding how this ableism permeates our lives so we can first keep our mental health and then help attack the true causes of challenges to parenting neurodivergent children: special education systems that aren't working, disparities in what should be a multidisciplinary one-stop care models for meeting the
Emily Titon is an autistic activist for disability
rights, human rights, and social justice. Emily
sits on the boards of several disability rights
organizations and can just as easily be found
community organizing for transformative change
Her work on the exposure of the JRC is a typical
example of excellence in activism.
lifelong medical, dental and vision needs of disabled community members, and research and technology investments in adaptive supports and accommodations that will allow universal design to fulfill its true purpose:  to be inherently inclusive of accommodation by design for disabled people, the world's largest and most underserved minority.

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

The case of Reginald Cornelius Latson is a crucible for representation beyond the disability nonprofit industrial complex. How have organizations who claim to be diverse disability rights advocacy organizations responded to four years of harm done to Neli?
Lei Wiley-Mysdke is the founding curator
of the Ed Wiley Autism Acceptance Lending Library
A community building effort to educate and
empower both the autism community and the
general public on neurodivergence 
Remember that Neli was able to move freely and without supervision in his community before this catastrophic encounter with police. This should have every organization and activist thinking that whatever went wrong, it was not wrong with a young man who had no prior criminal history, no record of aggression in school, and a diagnosis of Asperger's  given much later than other children, even those of color. So with that understanding, we must think of what was done to him that triggered crises and permanently damanged his mental well being rather than simply anthropomorphizing autism itself. Are organizations informing their members that the DOJ had already brought suit against the State of Virginia for their treatment of prisoners like Neli? How are your favorite organizations responding here? Did you only hear of the Latson case recently or not at all? That should tell you how they will treat your son or daughter should they fall afoul of the criminal justice system. Know who you are supporting before your fundraise, buy hair dye and run that 5k.

Back to that hope that people speak the truth without fear. Fear silences. Look at what is happening
Beth Ryan is a parent activist and example
of a transformative community organizer for
good  with healing efforts such as the online
 support group Parenting Autistic Children
 With Love And Acceptance,  
right now. A woman is shot, two police officers are shot, and this tragedy is being leveraged into a way of forcibly silencing

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

Remember the KONY 2012 guy Jason Russell? He did what many autism advocates end up doing. He allowed the brief media spotlight and sudden intense popularity to make him more important than the cause he championed.  That led to disaster. Sadly it was never about him. It was about the invisible children. And he went from making a difference to making everyone forget about what he was fighting for. Don't be that
Dr. Anderson-Grace is an autistic academic,
educator, activist, and board member on disability
rights organization. One of the founders of NeuroQueer,
she represents a movement that commands representation
and unity in intersected populations within our
community such that even her brief involvement
in community results in transformative change.
person.

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

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

Peace


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

Mentions links etc.

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

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

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

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

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

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

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

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










Sunday, January 4, 2015

Neurodivergence and Representation: Magic Maps, Musings, Farewells 1

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

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

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

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

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

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

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

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

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

Meeting some very confident young people at TASH left me hopeful despite my sadness for my own people. I would think Dr. Grandin would be proud of young people who self advocate about their own neurologies. Her statement also excludes very young activists who type like Henry Frost and Emma Zurcher-Long, able to communicate eloquently at such young ages with AAC support. Her insistence in seeing the future of our community only in kids on the spectrum with verbal speech when such powerhouse young typing activists are making names for themselves is not just sad. It is a very good example of hierarchy of disability by presumption of competence based upon what is visible rather than what is possible. Independent young typing activists leading their own generation are the role models for nonverbal autistic presumption of competence. Dr. Grandin speaks as if there was never a groundbreaking documentary called Wretches and Jabbers that changed the global conversation about communication and nonspeaking autism, and as if Naoki Higashida never wrote "The Reason I Jump". The reason Emma Zurcher-Long is a public speaker (note the word speaker meaning communicator - she types through most of her presentations that is her primary communication method) is because of the impact of these nonspeaking people.  Probably one of the strongest voices in our community is Amy Sequenzia who also communicates by typing. Dr. Grandin is a privileged
Amy Sequenzia, Autistic Activist and
Poet, advocate for nonspeaking autistics
users of AAC to communicate
voice in our community and she sets up an ableist hierarchy of disability, immediately feeling the need to insure that the listeners understand that she's excluding nonspeaking children when she discusses "the really smart kids". If she has this ableism, and she is speaking to audiences filled with parents hoping to learn something to help their children, what is she teaching them about my son and his peers? I have no soapbox that will equalize the reach of my voice and allow me to counter such ingrained prejudice. Her fame has given her a large platform but she is using it to segregate autistics who type or need supports to communicate from those who appear to have verbal speech and may not require supports in the classroom or have less visible expression of divergence in neurology.  I've tried to counter this attitude, with little success. I now need to step back and think of new ways to approach these kinds of tremendous obstacles within our community in addition to continuing my son's homeschooling and fighting the wars we must fight for representation of our loved ones outside it.

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

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

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

Saturday, January 3, 2015

Facebook Notes Series: My Standing Position on Facilitated Communication

Originally Posted on author's Facebook Page, April 21, 2014

Facilitated Communication, or FC, is the memorial whipping post of autism. An easy target to malign because fraud is always big news; many who do so are not aware that they are falling into an ableist point of view because said criticism is founded on the presumption of the incompetence of the user of this method as AAC support.

My issue with FC criticism is that medical malpractice is more frequent and widespread than FC fraud, but we don't discredit modern medicine, and we don't tell people not to seek medical help. Psychiatric fraud and malpractice are more widespread, but we don't discredit the practice of psychiatry. In fact one of the most devastating chapters in autism history was Bruno Bettelheim and the entire psychiatric community insisting on legitimizing his dissemination of the unfounded "refrigerator mom" theory of autism ( "although [ Leo] Kanner was instrumental in framing the refrigerator mother theory, it was Bruno Bettelheim, a University of Chicago professor and child development specialist, who facilitated its widespread acceptance both by the public and by the experts in the medical establishment in the 1950s and 1960s." - Wikipedia).  An entire generation of mothers and their autistic children were irreparably harmed, all from a concept that was horrific, because the psychiatric community was not held to account for what the man was doing simply because of his professional label.

Cases of FC fraud should prompt the kind of response fraud in any other human services area does; that is a call for stringent standards and vetting for facilitators. It should not (based upon the presumption of incompetence of the nonspeaking participant, which isableist) be thrown out. Situations like these are why the cliche "throwing the baby out with the bath water" was created. Articles critiquing FC  facilitators should be doing just that. Not attacking the method, but shedding light on how important it is that standards be set for those facilitating, just as standards are set for quality of all those assisting and providing support to individuals in our community.

So:
1. Presume competence of nonspeaking autistic individuals. Sue Rubin, Jamie Burke, Amy Sequenzia , Sharisa Kochmeister and countless others show us that the ultimate goal of assisted typing can be achieved though reaching that goal may take years.

2. Critique the fraud by all means but realize that malpractice and fraud are rampant and this should never prevent a method from being explored or applied. Celebrate the successes of this type of AAC as well.

3. Call for better quality standards in managing those who are trained to facilitate. Because the consumer is a nonspeaking one, it is important that strong self advocacy skills be established in the consumer as well. Be part of a solution. Improve the lives of nonspeaking people, don't take away the legitimacy of their speech support and marginalize them. There is a great deal of room on this giant ship of autism. Let's let everyone get onboard.

This post generated 56 shares and 87 comments. I will try to add some of the comments which were posted references below.
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http://tinygracenotes.blogspot.com/2012/12/i-was-self-loathing-fc-skeptic.html
http://emmashopebook.com/2014/03/28/seeing-others-write-to-communicate/
http://tinygracenotes.blogspot.com/2013/07/dealing-with-family-matters-of-constant.html

American Speech-Language-Hearing Association. (1994). Facilitated communication [Technical Report]. Available from www.asha.org/policy. http://www.asha.org/docs/html/TR1994-00139.html#AP2 [Particularly important are The Final Recommendations: http://www.asha.org/docs/html/TR1994-00139.html#sec1.12 and Appendix 2: Minority Statement to Technical Report on Facilitated Communication and Response from Subcommittee Chair http://www.asha.org/docs/html/TR1994-00139.html#AP2] Accessed 25 April 2013.

Bailey, Judy, 2006, Dealing with Silence and Coming Out of Silence, http://www.everyonecommunicates.org/.../ComingOutOfSilenc..., Accessed 30 April 2013

Bailey, Judy, 2007, Slides from a Presentation given by Judy C. Bailey, M.Ed.,at Ellensburg, Washington, Summer 2007, http://www.everyonecommunicates.org/.../Ellensburg2007.html, Accessed 30 April 2013  http://www.everyonecommunicates.org/nutshell.html

Bailey, Judy, 2005, Thoughts on Facilitated Communication Training (FCT): What If…?, http://www.everyonecommunicates.org/.../ThoughtsOnFCT.html, Accessed 30 April 2013

Brandl, Charlene, Sometimes It Can Be Hard to Believe, Grandma Char and lessons learned, 25 March 2013, http://www.grandmacharslessonslearned.blogspot.co.uk/..., Accessed 17 April 2013.

Brandl, Charlene, Why I Do What I Do, Grandma Char and lessons learned, 11 January 2013, http://www.grandmacharslessonslearned.blogspot.co.uk/..., Accessed 17 April 2013

Crossley, Rosemary, Issues of Influence: Some Concerns and Suggestions, Facilitated Communication Digest, Vol.1 No.3 (May 1993) [pp 11-12], reprinted at Institute on Communication and Inclusion, Syraceuse University http://soe.syr.edu/.../doc.../2011/8/Issues_of_Influence.pdf Accessed 23 April 2013.

Crossley, Rosemary, Literacy and Facilitated Communication Training, Facilitated Communication Digest, Vol.1 No.2 (Feb 1993) [pp 12-13], reprinted at Institute on Communication and Inclusion, Syraceuse University http://soeweb.syr.edu/.../Literacy_and_Facilitated... Accessed 23 April 2013.

Crossley, Rosemary & Borthwick, Chris. 2002, "What Constitutes Evidence?" Presented at the Seventh Biennial ISAAC (International Society for Alternative and Augmentative Communication) Research Symposium, Odense, Denmark, 2002, https://attachment.fbsbx.com/file_download.php... Accessed 24 April 2013.
Fransden, Mike, Examiner Health & Fitness, 9 October 2010, Facilitated Communication (FC) enables non-verbal people on autism spectrum to communicate by typing, http://www.examiner.com/.../facilitated-communication-fc..., Accessed 16 April 2013.

ASHA Practice Policy - Browse by Topic
Below are the official documents of the Association related to a particular topic. You can also browse documents by year and by type of document.
ASHA.ORG

Jasuta, Stephanie Sherbel, Speaking Up for People Who Can't Speak, Blogging Authors, Guest Post, http://www.bloggingauthors.com/.../speaking-up-for-people..., accessed 16 April 2013.


Tuzzi A. (2009). Grammar and Lexicon in Individuals With Autism: A Quantitative Analysis of a Large Italian Corpus, Intellectual and Developmental Disabilities, 47(5), 373-385.http://soe.syr.edu/.../2012/4/__Public_Lecture_SLIDES.pdf, Accessed 16 April 2013. (In English).



Wilkens, John, 'Nothings need to be heard', email Interview with Diane Goddard, Peyton's Mum, U-T San Diego, 29 March 2013, http://www.utsandiego.com/.../memoir-traces-familys.../... Accessed 16 April 2013



Williams, Donna, In the Real World, Printed in Vol. 3 No.2 (Feb 1995) of The Facilitated Communication Digest [pp5-9], Reprinted at Institute on Communication & Inclusion, Syraceuse University, http://soe.syr.edu/.../2010/7/in_the_real_worldwilliams.pdf Accessed 23 April 2013

Zurcher, Ariane, More About Facilitated Communication, Emma's Hope Book, 15 February 2013, http://emmashopebook.com/.../more-about-facilitated.../ Accessed 22 April 2013

Zurcher, Ariane, Is Facilitated Communication a Valid Form of Communication?, Emma's Hope Book, 16 November 2012, http://emmashopebook.com/.../is-facilitated.../ Accessed 22 April 2013

Zurcher, Ariane, An Unexpected Response and The Importance of Trust, Emma's Hope Book, 10 December 2012, http://emmashopebook.com/.../an-unexpected-response-and.../ Accessed 23 April 2013

Zurcher, Ariane, What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism, Thinking Person's Guide to Autism, 8 April 2013, http://www.thinkingautismguide.com/.../what-i-wish-id... Accessed 24 April 2013 

Sharisa Joy Kochmeister et al, The Voices and Choices of Autism - An Insider View, Volume 1, Issue 1 [pp 1-121]: June, 2009, http://pekdadvocacy.com/.../TheVoicesAndChoicesOfAutism.pdf Accessed 23 April 2013






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 affected by 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 affected by disease. 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 affected by Hansen disease. So you've managed to insult that entire community as well. (Please note Hansen disease is curable and those affected by Hansen can live with their familes: click here for more information.)

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 implying he is in a condition equal to someone affected by Hansen disease. You don't dictate how my son's disabilties should be viewed or defined. You don't get to mandate 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 and by doing so, improving the lives of their families. 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. That is the standard that should be set for disabled people as well. Comparing autistic loved ones to people affected by Hansen disease is just scary, because the comment stigmatizes those affected by leprosy and implies that autism is akin to leprosy, a chronic bacterial infection.

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 affected by Hansen disease. Parents and care providers aren't martyrs or saints. They are people whose job is to take care of their children and loved ones. 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.

Peace

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.