Haimonia, “Person-first Language”

Do we live in a word-cage? Are we bounded

by conceptual maps that tell us where we

belong? Could the thesaurus change our world or

will old concepts accept new terms and the same

laundered attitudes hide in fresh polite clothes?

You think synonyms never bite like slurs do.

Do you know what it’s like to be a walking

talking symbol for everything that’s broken?

(can i keep my defective brain a secret)

Our community built on things we can’t do

Our invisible flawed humanity shakes

with our hands as we stand or sit or something

and remember the things you say about us.

Adelaide Dupont: Crip Video Productions

Since February 2017 Margot Cole of Crip Video Productions has been working on A stroke of endurance – a film about how students deal with their professor developing a stroke in the middle of the semester at their university.

We meet various students and we see the film through the eyes of Ava. Ava has many friends with and without disabilities. She studies biology as one of her classes and that is how she and Professor Ben meet.

The film was released by Rich Brotman, an authorised Crip Video Productions distributor, on the 22nd November 2017. A great film for Thanksgiving / the late-November study rush.

The opening music really put me into the picture as did the credits.

There were some great scenes of a busy and accessible campus.

Seeing Professor Ben gradually develop a disabled identity was very powerful, with Ava’s help and the rest of the students.

And, yes, professors do get accommodations. Being dizzy does affect the material conditions and major life activity of teaching and learning, so I hope it would not be denied on that basis.

Loved the way that Ava and Ben show that this life is all about learning.

The students reminded me of well-known people like Emily Ladau and Vilissa Thompson, who when they were students themselves, were activists in various capacities.

Halfway through the film was very satisfying. We see Ben at work.

The students’ initial reactions were very real especially the pigtailed student.

Hoping to see a more accessible version of the film. The current version had auto-generated Spanish captions. Maybe for International Persons with a Disability Day on the 3rd December 2017?

The “faith” part of the film came across when Ben asked for prayers – “if you pray”.

And the “friendships” and “endurance” ran together beautifully.

One thing – Jorgiana Cole is a very good choreographer and cinematographer.

I think the one swear I heard was “frack”. Fracking is a very dirty word for a dirty thing – unconventional shoal gas.

[I’d wondered if there were any environmentalists in A stroke of endurance…]

Walei Sabry: what music went with what characters? Was there an “Ava’s theme” and a “Professor Ben theme”? What about when the students were together?

The film used 21st century technology for post-production like iPhones from the cast.

Hillary Krzywkoski: Different, Not Less

I am an emerging writer and artist with a story to tell about my autistic family’s past struggles. My husband and I have faced adversity when in the formative years of building our family, beginning with our marriage and the conception and birth of our first child, marking a years long struggle for parental autonomy, free from bullying and abuse. I have sought healing through my art and writing this last decade, and have entered my narrative into public discourse via the arts. I have been fortunate to have my work circulated recently at the 2017 Ruderman Foundation Inclusion Summit. I am speaking out against abuse of autistic mothers and fathers. Much of the abuse begins on the home front– through our extended familial relationships, to be recognized and respected as a competent and worthy parent, to be allowed to be fertile and strong, to be allowed a legacy. I am speaking out against the abuse of autistic mothers by midwives, OB/GYNs, and other birth workers. Below is the work that was on display at the Inclusion Summit through The Mighty:

These ancestral totem-inspired paintings process my traumatic initiation into parenthood as a disabled Israeli immigrant and abuses during pregnancy, birth, postpartum, and the formative years of parenting autistic children in a culture which assesses autism to be a scourge. I’m visually articulating the chronic, systemic abuses that the majority of Autistic mothers and fathers live with– in the United States, Israel, and elsewhere. I’m seeking a safe space for my family’s unique identities, abilities and neurotype within society where we can also find respect as autistic Jews.

The phrase, “Different, not less” must be applied intersectionally to Autistic gender, sexuality and courtship, fertility, family structure and dynamic, where autistic parents and their autistic children have every right to self-determination, self-exploration, and the fulfillment of a loving and nurturing family life in the pursuit of health and happiness with autonomy and dignity.

“The Burden” :

Utilizing the tarot card format and lyrics from The Carter Family, this text-heavy painting depicts the abuse, bullying, and slander of my young family in our immigrant community following the conception and birth of our first born, and the crisis of having to escape in a short period of time.
The Burden

“Our Spilled Blood Sprouts Flowers”

Near death, hospitalization, and continued attempts to separate us have not broken my bond with my child. In spite of harsh circumstances, flowers bloom from our suffering. Now in safety, the trauma transforms into strength and meaning— a blessing.

Our Spilled Blood Sprouts Flowers

“This Too Shall Pass”

A trauma process piece and a search for inner strength. I paint myself a mother wolf, a protector, stronger than the assassin who pecks and tears at my hide, who’s not able to reach my children who hide beneath my underbelly. The surrounding lunar cycle teaches that there is balance to life and these terrible circumstances cannot endure.

This Too Shall Pass

I hope this can reach other autistic parents and mothers, and make a contribution to what I am learning is a rich history. I hope to contribute to the public understanding that we too are worthy of good lives, full of meaning and purpose.

Autistic History Month 2017: Link Compilation

Compiled by Kit Mead

This is a link compilation of posts about autistic history, whether general autism history or personal autism history, and foundational/influential pieces. Some of these links may contain information that is “dated” or they may have occasional iffy content.

2017

2016

Update: Submissions should be scheduled this week and next

Hi folks,

I know it’s been quiet over here since the call for submissions (which are still open). I’m the only site admin/mod and have been dealing with stuff that life decided to make happen. I hope to start responding to and scheduling submissions this week and next. Sorry to keep everyone waiting!

Best,
kpagination

Submit for Autistic History Month 2017!

Celebrating a rich Autistic culture and history that deserves to be told

Submissions for Autistic History Month are open until Nov. 29!

AutisticHistoryMonth2017
[Begin image description: The entire image has a faded, sepia overlay. On a papery-looking background, there is an opened book, the text “Autistic History Month 2017,” and a painting depicting neurodiversity. At the bottom of the image, there are three circle shapes, connected by dots, with the text “history, community, culture” in them.  End image description.]
Aspects of Autistic history can include the history of autistic culture, community, activism, and self-advocacy. They can be family or personal autism histories. We also are looking for oral histories and interviews with long-time activists.

Submissions can be of a variety of types, including:

  • art,
  • photography,
  • poetry,
  • oral histories,
  • interviews,
  • prose,
  • or a combination of the above.

For examples of submissions, please see previous years’ events:

Submit and contribute to recording and sharing Autistic History! 

Have something that doesn’t fit into our guidelines or just want to take part in another really cool event? Check out the long-running event Autistics Speaking Day, which is November 1 – their submissions are open now! 

2016 Participants List

Autistic History Month was pleased to publish the following people and posts in November 2016. In alphabetical order:

2016 Closing Post: Autistic History and Working for Change Today

Introduction

by Kit Mead

Each year, we will share a post on November 30 to close out Autistic History Month. The closing post will follow a theme each year. 2016’s theme centers the importance of preserving autistic history and how we can use that history to work for change today.

A survey will also go out every year to discover whom the posts reached, and if we changed anyone’s knowledge base of autistic history. This year’s survey is available here: https://goo.gl/forms/FU4k5ay43cMjF3lm2

November comes to a close, with all its tidings of news and current events. Thank you to everyone who submitted to Autistic History Month, those who spread the word, and those who read and shared the posts. Thank you for furthering the knowledge of autistic history, and showing that we have a history. I am the first to admit that I don’t know everything about autistic history. But I worry that many do not know our history, about those missing from it (such as autistics of color), and that we are not preserving it or current events or work of a diverse community.

Knowing history is vital, especially in this time of turmoil for many. Knowing autistic, and other disability history, is vital. If we don’t know how we organized and formed communities in the past, it’ll be harder to organize and sustain community now. We must also preserve our history and current events, and the work of a diverse community. If we don’t, future autistics could lose the chance at an identity backed by cultural history and strength from that. I’ve asked another community member, an autistic historian, to weigh in on the value of knowing autistic history and using it to work for change. Their contribution is below.

Autistic History in 2016: Where are we going and where have we been?

by Sarah Pripas-Kapit

People who don’t know very much about history oftentimes say that we need to study history because it repeats itself. Most historians I know groan at that cliché. In truth, we need to study history because we cannot possibly understand how we got here if we do not.

Such is the case for the autistic community. I’ve been involved with our community for ten years now, and I can say that a lot has changed even during that short window of time. While the neurodiversity movement was alive in 2006, it lacked a lot of the organization and power that it now has. Social media was still in its infancy, and the community was much smaller than it is today. The Autism Hub—where I blogged for several years—was the center of the online neurodiversity community.

Shortly after I joined the community, in 2007, the NYU Child Study Center plastered the New York metropolitan area with hurtful, ableist billboards about autism and other disabilities.  Intended as a public service campaign, these billboards actually did a vast disservice to autistic people and people with psychiatric disabilities.

This itself wasn’t anything new. What was new was the fact that we were able to defeat the campaign. Within a few weeks, the billboards were down. Along the way, we earned media coverage in major outlets. Most of the people who read those articles probably never heard the word “neurodiversity” before.

The end of the Ransom Notes campaign hardly marked the end of ableist “awareness” messaging. But it was, nevertheless, an important milestone in our history as a community. Anyone putting together a public services campaign today, nine years after Ransom Notes, would be aware of our existence as a politicized community in a way that the NYU Child Study Center was not.

Of course, 2007 hardly marked the beginning of autistic history. Our community’s history is a long one, and in many ways it is quite complex. The very notion of autism as a concept dates back to Hans Asperger’s work in the World War II era—which is hardly any time at all in the grand sweep of human history. Yet autistic people existed before the autism diagnosis did. These pre-diagnosis histories matter, too.

While there have been several excellent historical works on autistic history penned by non-autistic authors, it is critical that autistic people ourselves participate in the project of autistic history. We need to look not only at Asperger’s and Kanner’s records, but also within the histories of psychiatric institutions, monasteries, institutions of higher learning and more. We need to look at archives across different continents, in different languages, telling stories of autistic people of diverse genders, cultures, ethnicities, religions, and sexualities.

Autistic history is a huge project, and we’re only now getting started.

There is no single history of the autistic community, just as there cannot be a single history of women or LGBTQ people. But—if I can be a total history geek for a moment—that makes the work to be done all the more exciting. If you have any interest in this at all, start joining in this work.

Now I have to provide a few cautionary warnings. It can be tempting to believe that history is an upwards trajectory, with things always getting better and better. Historians call this the “Whiggish view of history.”

Yet the Whiggish view of history oftentimes is not supported by evidence, as I’ve learned in my own studies of the history of women’s medical education in the U.S. Sometimes there are dips and regressions. Sometimes people of the past were more progressive than we give them credit for. Sometimes age-old oppressions are actually newer than we think.

This is sobering news. While the past ten years has been a period of progress for the autistic community, I fear that we may be heading into a period of regression. As so many others have said, the election of Donald Trump to the presidency is looking to be disastrous for people with disabilities. Like many of you, I am concerned about the months and years to come.

History tells us that civil rights are never a done deal. We have to work continually to uphold them.

But I hope that history can also provide hope. We are not the first generation of disabled people to face an ableist state and rollbacks of progress. By looking to the past, we can find a way forward during these turbulent times.

Contributor Bios

Kit Mead is the current admin of the Autistic History Month blog. They are a queer, Autistic disability rights advocate who also has mental health disabilities. Kit’s work on disability, queerness, and mental health has appeared in QDA: A Queer Disability Anthology, Luna Luna Magazine, The Establishment, and The Deaf Poets Society. Kit also writes at their blog, Paginated Thoughts.

Sarah Pripas-Kapit is a freelance writer and editor with longstanding involvement in the autistic community. She holds a PhD in History from the University of California, Los Angeles, where she worked on the international history of women’s medical education. Her work has appeared in Gender & History  and Great Plains Quarterly.

“The Internet is Ours!”

“The Internet is Ours!” Autistic History Month Part Two

by R. Larkin Taylor-Parker

originally posted at http://autisticfuture.com/2016/11/24/the-internet-is-ours-autistic-history-month-part-2/


“In what distant deeps or skies.
Burnt the fire of thine eyes?
On what wings dare he aspire?
What the hand, dare seize the fire?”
-William Blake

III.

My grandfather’s life just overlapped with the flowering of the Neurodiversity movement. I had joined Wrong Planet by the time he died. I remember when those kidnapping ads ran, though I wasn’t personally involved in the response. My memories of how I became more deeply immersed in Autistic culture are fuzzy. It was a gradual slide. Maybe the loneliness I felt when I lost a kindred spirit pushed me in deeper. The loss of the only with whom I could identify in certain ways also forced some maturation. This may have deepened my sense of responsibility for nurturing and protecting our community. Maybe it didn’t. I’m not sure what happened, just that I started to help tell the story of an Autistic people, and the story swallowed me up.

I thought about my grandfather, sometimes, when I had to make hard, moral decisions. He was careful to be hopeful, generous, forgiving, and brave in front of me. I did my best to follow that example. When neurotypical parents threatening to kill Autistic bloggers who were still children, when I encountered Autistic adults so consumed by their suffering that they could not live in community with others, I thought of him. I remembered that he got through the war with a gentler temperament than mine. I did not want the worst of what I had stumbled into any more than he had, but I thought of him and did my duty plus whatever I could to make the experience more bearable for others. I tolerated rough handling as best I could from the people life had just fundamentally broken. I reminded myself that bad actors within the community hurt others out of pain and fear. I tried to stay proportional in the ways I tried to protect our community. I did my level best to take care of children, parents new to disability issues, and delicate adults. I made myself available, day and night, to anyone with questions.

I didn’t think differently about my grandfather’s memory in the context of Neurodiversity other than the way I always do. I took examples from it. I wore it, and one other’s, like a suit of armor. No matter what happened in the course of my advocacy, or my life, I’d seen people like me who were respected and worthy of respect. They never conceded their own inferiority, and they loved me. This kind of love deadens blows. It’s a light in dark places. Too many Autistic people die too young. I’m convinced that this is why I didn’t, how I came to be alive.

“And what shoulder, & what art,
Could twist the sinews of thy heart?
And when thy heart began to beat,
What dread hand? & what dread feet?”
-William Blake

IV.

My grandfather will have been gone ten years this Chirstmas, but death so rarely gets the last word. People say I look like my father’s people, mostly, but I have the eyes he did in an old, colorized picture from the war. I also have his hands. Within a year of getting my first car, engines started making sense to me. I kept mostly-dead cars running and built a computer mostly by instinct and YouTube videos. I learned enough of some machine languages to build websites. The toolbox in the back of my truck ballooned to 150 lbs of hammers, wrenches, assorted cables, and screwdrivers. Working on an old Buick when I was 20 gave me the creased, warped fingernails of a mechanic. As I started to pull together an Autistic community in Atlanta, I drove everywhere and carted other people around. In the end, the best way to take care of them was to drive away.

When I went to law school, the internet was my lifeline to the Autistic community. Living among neurotypicals, I sometimes go weeks without seeing another disabled-identified person. A glance up and down the law library is a sobering reminder of how few people like me make it this far. Law school has been lonely both because of my separation from the community and because few other Autistics will be my peers as workers, as professionals, and especially as legal professionals. There are a handful of Autistic lawyers, but I doubt I’ll live to see very many. I’m studying my way into becoming a rarity. The transience of law school and the risks of student loans are divorced from the narrative of what Autistic people can and should do. Neurodiversity activists heavily emphasize personal comfort and safety and aren’t usually interested in aknowledging the hard truth that personal sacrifices will sometimes be important for moving us forward. This sometimes leaves me wondering whether I can fit in anymore.

It was in that environment that I found Neurotribes. I saw my family in its pages, the rural South, the war, and the machines. I saw a legacy of wires and waves, an unbroken line from the Teslas and [radio guy]s of the late nineteenth century. I had heard rumors about our involvement in the origins of the internet and never gave them much credence. I thought it was one of those things people do to feel better about themselves, but here it was on paper. The argument was simple, elegant. It showed its work. Step by step, it traced a lineage from people who tinkered with electromechanical things in the early twentieth century to the present. I had pesonally encountered people who lived the chapters from WWII on. I had seen the homesteads and graveyards in the mountains with my grandfater. He was teaching me Morse code when a elderly HAM operators, princes of the air grown up and grown old, invited him to speak about his time on the bomber. He brought me along to meet them. Neurotribes flowed through the origins of computers and the growth of the networks until it disappeared into the present like a river flowing out into the sea. The names and dates near the end of the book are marked in my own memories.

From the early cables and radios to the signals that crackle around me and light up my phone this evening to the end of what I will be, it’s all one story. The strange grace of a way with the internet was probably innate. It was easy to clothe myself in wires and light because this was a kind of birthright. The internet embraced so many of us because it was made for hands like ours. I finished the book thinking about a Neurodiversity slogan from when from when I started out: “The internet is ours!” The intuition behind the old battle cry was right. The internet is uniquely ours, and that makes us uniquely responsible for it. We made something like life, and it did what we hoped it would do. It gave us better ways to communicate. It helped us form a community and binds us together. As we come into our own, as our community grows up, we need to take responsibility for this thing we put in the world.

The soul in the machines is ours to raise. We must lead it away from angry mobs and toward measured, proportional responses. It’s our responsibility to keep our tiger leashed. It’s our job to be friends of the young, old, fragile, and clueless and enemies of everyone willing to damage our internet for profit or use it to spread bigotry and fear. We are in the best position to do this because we use it incessantly. We’re good at getting it to do what we want. We’re not entitled to inject a powerful, new force into world affairs and let it harm others. The internet is ours, ours to use carefully and mercifully, ours to play with, ours to protect, and ours to train into a model citizen of the world. I hope this is the next chapter of our story. We’ve bound that story up with the internet’s, so let’s take care of it in hopes of a good future for us all.

Giraffe Song

Giraffe Song

by C.L. Bridge


 

Giraffe Song.jpg

[Begin image description:
In the bottom right of this gouache painting, a hand is making a giraffe shadow puppet on a background of blended purples.
On the left side of the painting, a silhouette of a giraffe turns its head toward the shadow puppet. The giraffe silhouette is mostly pale yellow, with some blended shades of purple. On the giraffe’s chest is a maroon heart shape. The heart is a collage of overlapping typed words and phrases such as “neurodiversity” and “inclusion”. White music notes are in the top center of the painting.
On the top left of the painting is a stained glass window with six panels and a rounded top. Each panel is a different shade of reddish or bluish purple. The panels contain a collage of overlapping typed words from various essays on autism acceptance and from an article about giraffe communication.
End image description.]

*Admin Note:
The giraffe is often used by the autistic community as a symbol of pride and uniqueness. A fuller explanation of the party giraffe can be found here https://www.facebook.com/notes/346050228939057/ and here (also has more details on other images of autistic pride): https://unstrangemind.wordpress.com/2015/04/09/g-is-for-giraffe/)