With Liberty And Justice For All: "Will Chuck Forget?"

..."With Liberty And Justice For All" hopes to be a guest blogger series by Autistic teen voices against catastrophic violence to their neurodivergent peers that happens when preventable bullying events are ignored and escalate. Autistic Teen Activist Henry Frost leads with this moving post. A version of this article was previously published in Ollibean. kç

Will Chuck Forget?

Chuck is terrified to go to school. He has stuttering. Others laugh when he says something.
 He has a breakdown at school.

Some boys do feel bad but have no courage to tell and stand up for him. The teacher pretends nothing is wrong.

Chuck went missing.

Questions:

Who is responsible?
What can his friends do if he is found?
What does it mean to watch and look the other way?
Will his teachers take initiative and how?
What can his family do?
Will Chuck forget?

End of  the story.

I wrote this story when I was in Austin with Soma in October 2013. It is part of a book of  stories for discussions.  Two Houses is one of the stories. There is another in Halo’s Voice.

"If you are bullied, tell someone. It is not you who should feel shame. "

--------------------------



Henry Frost

In 2012 Henry faced disability based discrimination when he was denied entry to the middle school across the street from his home. Then 12 year old Henry started “I STAND WITH HENRY” to take action against the segregation and low expectations he encountered and to empower others to stand together and demand full access to equal education in their neighborhoods. Henry’s international social media campaign garnered tens of thousands of supporters and he was allowed entry into his neighborhood school after months of negotiation. Henry went on to excel not only in General Education but it Advanced Honors and Gifted classes.He was the 2013 Recipient of the Autistic Self Advocacy Network's Award for Service to the Self-Advocacy Movement. You can find Henry @istandwithhenry on Facebook and Twitter.

Kudzu, #AutismSpeaks10, & The Autism Wars

When my son was 2 years old, something pervasive, noxious, and invasive entered his life and ours. No, I don't mean autism. I mean Autism Speaks. Autism Speaks was quite literally the kudzu of the autism and autistic communities.

 

Clemson University researchers are nearly lost in the overwhelming cover of kudzu vines, which have spread over every surface, object and tree in the area. (Credit: Clemson University News)

First I should explain what I mean by kudzu, for those who may not know. Here's a quick primer. Quoting The Weather Network's article,  kudzu is the

"Plant scourge of the South adding more carbon dioxide to the atmosphere, aiding in its own spread"

Specifically:
"It quickly covers the ground, buildings, and anything else around, blanketing fields and even climbing up trees. Any plants unfortunate enough to be overgrown (including trees) are deprived of sunlight by the dense cover of kudzu leaves and they quickly die out. These vines now cover over 3 million hectares of land throughout the U.S., mostly in the southeastern states - Georgia, Alabama and Mississippi - but it has spread south into Florida, west to Texas and north as far as Ontario. "

"While these growths have taken on epic proportions, that's not the only problem from kudzu. It's already been shown that kudzu causes more nitric oxide (which is also a byproduct of burning fossil fuels) to be released from soils, which has caused an increase in ground-level ozone levels during summertime heat. In addition, as the plants continue to spread northward, especially with climate change, they are actually increasing the amount of carbon dioxide released from the soil into the atmosphere, introducing a feedback loop. "

"According to Malcolm Campbell, a professor and the vice-principal of research at the University of

Kudzu seed pods credit Wikimedia Commons

Toronto, in his piece in The Conversation, the research of Nishanth Tharayil and Mioko Tamura, from Clemson University, shows that the plants choked out by the kudzu tend to lock more carbon into the soil."

"The study, published in New Phytologist, showed that despite a 22 per cent increase in soil litter (due to the abundant leaves the kudzu drops during winter), there was a 28 per cent decrease in soil carbon after a kudzu infestation invades an area."

"According to a Clemson University press release, Tharayil said: "Our findings highlight the capacity of invasive plants to effect climate change by destabilizing the carbon pool in soil and shows that invasive plants can have profound influence on our understanding to manage land in a way that mitigates carbon emissions.""

Flowering kudzu credit Wikimedia
Commons

We watched in stunned helplessness as Autism Speaks, like kudzu, invasively entered our lives and propagated gigantic, noxious campaigns that spread vapors of ablest humiliation, hopelessness, and resentment sprinkled with the occasional seasoning of inspiration pornography around the world. Their misguided doomsday scenario of fundraising by fear of an autism epidemic oppresses supporters to relieve that sense of helplessness by raising money to aid it in spreading its depressive rhetoric. Local autism nonprofits directly helping autistic adults, children, and families saw funds being choked off as Autism Speaks launched massive media campaigns to generate new fundraising revenue streams of tens of thousands of dollars towards odd research efforts (read about why Alison Singer resigned from Autism Speaks here) each year.

As kudzu spread north, killing every native plant in its path, Autism Speaks expanded into legislative efforts and advocacy, with all the finesse of a bull in a china shop, upending or appropriating efforts by informed legislative activists and organizations not in lockstep with them while trying to mandate its own singular, damaging agenda.  Autism Speaks spoke about autistics while choking out their voices. It claimed it spoke in the name of all autism parents while demanding all parents accept their idea of what autism does to families and what autism policy should be. It has spent recent years trying to obliterate any other advocating voice for autism by such misadventures as:

• attempting to come to Washington D.C. and mandate their singular biased opinion of a national autism policy all the while ignoring disabled disability rights activists and all other autism and disability nonprofits. (This effort continues.); 
•  targeted releasing of another apocalyptic "autism the epidemic" PSA (Sounding the Alarm) and massively pitching and screening it privately, along with sprinkles of funding, to various schools of public health and health care facilities in order to add professional legitimacy to their private autism agenda; 
• that disturbing genome database campaign in collaboration with Google  named and hashtagged "MSSNG" meaning "missing", implying their view that a puzzle piece is missing from our children's brains and bringing to mind disturbing and dangerous eugenic practices of the past that began with attempts to prove that any divergent population was less than another genetically
•  going as far as traveling to self-promote and attempt to control the autism conversation in Catholic countries by marketing their organization to the Vatican complete with founding member Suzanne Wright's unfortunate statement that families look upon their autistic loved ones as St. Francis looked upon someone with Hansen's disease. 

When autistic activists, who remember their lives as neurodivergent children in a world of refrigerator mom treatments, Lovaas punishments as therapy, shock treatments, institutionalization, and unspeakable harm, raise their voices in protest, Autism Speaks unleashes their supporters to bully and insult these justifiably angry advocates. It is a sad spectacle to witness.

Parents attacking autistic adults is in a very real sense akin to those parents attacking adult versions of their own autistic children.  Their inability to see that in their frenzied passion to attack (in the name of a mega nonprofit that uses legal power and corporate might to defend itself with impunity) they are damning the only people who know firsthand what the futures of their own children will hold and are fighting like hell to ensure better futures for autistic children is sadder still. Would they want some stranger to attack their children as viciously as they are attacking autistic adults under the cover of social media? It is heartbreaking to see this degree of hostility and compartmentalization in Autism Speaks supporters. Aren't we all also parents? Aren't we supposed to have the maturity and control our online behavior? Melting down on social media over a hashtag trouncing is not the solution to what is happening. Asking why #AutismSpeaks10 is viewed with such enmity by adults who are truly like our children because they share their neurology might be a better place to start.

Mu, autistic, out and about representing Charm City
On Purple day. Purple has become the only shade of
blue we endorse. Please note the absence of the puzzle
piece. ©Kerima Çevik

Our family never recovered from the shock of seeing Autism Speaks' "Autism Every Day" PSA, which is still branded with its logo and available for viewing on YouTube. We never viewed our son in this manner and it upset us greatly to have autism-parents presented in this way. Having learned our lesson about the depressive effect that Autism Speaks can have on us, we now set a blistering schedule well ahead of time for the month of April to avoid the media bombardment of Jerry Lewis telethon style content that leaves us dispirited every Autism month. Shopping for school supplies, groceries, and a host of other things is a challenge during the month of April. Kudzu, I mean Autism Speaks, and their pervasive puzzle piece logo, meant to represent a piece missing from our children's brains? Or the unsolvable "mystery" of autism, or something? is in our faces. Tenth-anniversary celebrations will only make their annual month-long assault worse.

Autism Speaks came into our lives like kudzu, destroying and divisive to those it presents itself as being in the service of. The good news is kudzu is edible. And if the right species are planted to counter it, things like soy, peanuts, and peas, those plants will give back to the soil and allow native plant life to grow back.

kudzu starch cake,katori-city, Japan ©Katorisi Wikimedia

So how can we fight the kudzu spreading in autism land?

By continuing to insist that Autism Speaks stop inciting panic and hopelessness to control the autism conversation and raise money. It is WRONG. Speaking out even if they use their massive media control to counter. Continue to inform people about what Autism Speaks does and why it is wrong.

Continue to insist Autism Speaks include autistic representation. Autism Speaks needs meaningful autistic decision-making representation. This means either a collaborative working partnership on equal terms with autistic-run organizations that have equal representation in deciding autism policy and issues that have a lifetime impact on autistic children and adults, equal representation on the board of directors, or both. The composition of its board makes Autism Speaks appear to speak for wealthy, cisgender, white, parents, grandparents, and professionals who have autistic loved ones.

Don't allow Autism Speaks to continue efforts to mandate national Autism Policy as they see fit while excluding all other stakeholders: Autism Speaks must stop insisting on forcibly attempting to promote their own agenda by mandating autism policy alone. Autism policy, whether they like it or not, must be inclusive of all stakeholders including autistic voices and the voices of other organizations who represent autistic people and their families and care providers. This is not a corporate takeover. This is a cause and human lives are in the balance.

Reclaim Autism Month: Autism month should not be the personal fundraising self-gratifying palooza of Autism Speaks. It should be a time when the full scope of what autism is, as well as how autistic people have always been part and parcel of our society should be on display. It should be a month for understanding, educating, and beyond awareness, it should be a time for demonstrations of acceptance, positivity, and hope.

So please Autism Speaks, do not obliterate other voices with the ritual explosion of 10th-anniversary chest pounding. We get it. You've leveraged a fundraising model that worked for Susan Komen for years. You're flush with funding and more is never enough. That doesn't give you the right to smash the voices of those you claim to speak for and torture them with loud, sensory overloading, displays of power that are dangerous to autistics. Tenth anniversary or not, for the safety of the autistics you claim to serve, tone down the over-the-top antics a bit this year.

My wish for #AutismSpeaks10 is that Autism Speaks makes a conscious decision to cease being the kudzu of the autism community and act to reinvent themselves into what they should be, a nonprofit that has true autistic representation and allows autistic voices, including those criticizing them, to speak their minds without being the victims of personal verbal attacks and abusive rhetoric by overzealous supporters. We could suspend reality for just a moment more and pretend that Autism Speaks lived with us in the United States and understood that autistic people and families who aren't Autism Speaks members, volunteers, or supporters, like all other stakeholders, had the constitutional right to speak their minds about policies and practices that directly impact their futures.

Further, we could push this make-believe scenario and consider that if all autism organizations looked for points of policy everyone agreed on, worked on a summit that united these points into an autism policy plan acceptable to everyone, then everyone would successfully advocate for said joint autism policy and the acrimonious nature of the autism wars might pause for a cease-fire.

Wars tend to end with ceasefires.

Peace

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

"When an man lies, he murders a part of the world" 

                                                                       - Merlin

                                                                                                  from the Movie Excalibur

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

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

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

Mu in his 'fro phase with his favorite t-shirt at his computer
in our old house. the shirt is white with the words "Stand Against
Restraints and Seclusion by Teachers" t-shirt by autistic
activist Lydia Brown. Photo ©Kerima Cevik

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

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

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

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

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

Peace.

Until the Murders End

This is the last article I'll be posting for awhile. I've tried for over a year to write about this topic, but each time I've broken down. I decided to fight the sadness because I just don't have the time to continue to be silent on this. Tragedies keep happening. 

Time to explain the scrolling names at the top of my blog, and why I am listing murder victims and how they died. 

Someone commented recently that they didn't want to participate in the annual day of mourning for disabled murder victims. "I prefer to focus on happier, positive things", they said. Don't we all? But when we turn a blind eye to injustice it does not go away. It worsens, escalates. When people who consider themselves "good people" ignore injustice they enable it. Sometimes, you have to stand up for what is just, by reminding people infamy exists, and its victims are waiting to rest in peace. 

The murder of Autistic children by anyone has always upset me. I don't want to hear any excuses made for anyone who has committed such an act because my job as a special needs parent is not easy either. My son has a great degree of impairment and historically, little or no supports. He is, "like your child" if people must have that trope. I have enough respect for him as a person not to spend my life complaining about being his mom because I am one of the reasons he was born. I own my part in his coming into my life. He was, and is, a wanted and welcomed child. It is no fault of his own he nearly died on his first birthday from a deadly flu despite being vaccinated. His great challenges are not his fault. He is a heroic person. I could not be as patient, loving, or understanding as he continues to be despite the abuse he has suffered in two school placements by people who presume he is not human and is not worth their trouble. His daily perseverance in the face of overwhelming challenges to be independent is staggering. I am not half the person my son is. I am over 50 years old, and I have yet to meet someone like my son. 

So when someone takes someone like my son, a human being fighting for their own place in society, for the right to be counted as human, to be independent, to overcome their impairments, and snuffs out that light, it is as if I've been stabbed. It kills something in me. The grief is personal. 

 I want this to end. All of us want that. I think that it can only end if we do the following:

1. Remember and honor the victims. Thus the scrolling marquee atop this blog. I don't want to forget them. Ever. I'll update this post to add other sites and pages open for people to discuss and post on this topic, made to honor the dead and fight for the living.

2. Educate ourselves, then spread the word. Silence kills. It is not ok to call murdering a person a "mercy" because they are disabled. No one has the right to take a life that is not their own. How sad that people have done murder in the name of fighting for the unborn, but when those same people see that these babies are born disabled, they somehow feel it is fine to even consider dispatching them from the world. Disabled people have apparent challenges that are many times visible. Typical people can hide challenges. That doesn't make typical people superior. It just makes them different.

3. Remind every care provider, professional, and parent that the murdering a disabled person is a hate crime.  Some parents hesitate. They are afraid of scenarios where they might be the parent in trouble. Wow. Stop that. If your mind is going there, if you are that stressed, depressed, overwhelmed, run and get help. But don't support murder because you are afraid you might be the next parent locked up for harming your child. There is a qualitative difference between needing respite from care providing and committing murder.

4. I understand some families have agressive adults, or children or adults needing intensive supports and round the clock care in their families. If you cannot manage your child, continually seek professional help. Please do not listen to any employee of the system who tells you the short cut to group home placement is calling the police and using domestic disturbance calls to document your loved one is aggressive. Or that euthanasia is what your loved one would want if they could tell you. Probably the largest number of deaths from catastrophic encounters with law enforcement occur because families are told to do this to get their adult placed in a residential setting. And the right to take a life in your care is not yours.

5. Save lives. Be an active neighbor, a mindful witness, a concerned friend. If a parent, care provider, educator, or staff member confesses they are depressed, suicidal, overwhelmed, help them get help. Help them by making phone calls, bringing meals, raising money for respite, or positive behavioral supports that can help the whole family cope. If nothing else. advise they consider a compassionate removal of their loved ones into the system. But please, please, do not ignore cries for help.  And respite works two ways. There is the concept that care providers need respite. But more often than not, regular respite activities for disabled loved ones are welcomed by them as well.

So the victims will be on display on this site this Autism Acceptance Month, maybe longer. Because new murders keep happening . And they won't stop if we avoid speaking of it for more pleasant things.

In Memory of Robert "Ethan" Saylor, 26,  Steven Simpson, 18, and all those who came before them.