#CrippingTheMighty

It is hard being autistic when the public perception is against us. As an autistic, I am disabled. It is hard being disabled when the public perception is against us. It is hard when I see vast amounts of information and resources aimed at caregivers. And that is not always bad, when the stories are respectful and have insight from disabled people! Caregivers need to know how to caregive respectfully and responsibly! But so much of it is told from their perspective, and many of the stories are not respectful. The media matters and though the media reflects society, society also picks up things from the media.

What should we ask for?

• They need to pay the disabled writers who still are willing to publish with them.

A fair wage, not just scraps, too.

• They must make at least 50% of their editorial staff be disabled editors.

They must have real power and a real say.

• Signal boost and amplify writing by disabled writers as the majority of their pieces.

No more inspiration and pity parade stories, please.

• Stop using this as a purely money making platform and actually post things that support
  disabled people

The best way to do that is bullet point three. Admittedly some disabled people inspire me. Not because they're disabled, but because they are awesome. But post stories by disabled people that are not just inspiration porn, but practical. Life narratives are fine and we could all use role models, but we disabled people also need more practicality and things that give us tips on how to get around in day to day life.

-----

More posts: 

http://www.thismess.net/2015/12/two-ethical-futures-for-mighty.html 

http://iamthethunder.tumblr.com/post/135780680465/there-are-stories-about-people-with-disabilities 

Explaining autism is important

Explaining autism is important

I'm going to draw on something important here – my own experiences. So, I was diagnosed at the age of 14, in 2007. And no one explained it to me. Well, people tried, maybe. Just not very well. It wasn't explained as a disability. It wasn't explained as something that impacted me in every part of my life. It was explained as “well this is why you have trouble talking to people and with social interactions and why you have some of these behaviors.” There wasn't anything about sensory issues or effects it had on executive functioning or how it flavored my every experience.

Maybe it was difficult to see how to explain it to a teenager who was also dealing with some personal issues and hitting high school. Mostly, I think the people explaining it to me didn't see it as a disability. My 504 plan in high school (a step below an IEP), from what I knew of it, sought to ease my passage through high school. And it did, enough that I didn't have to self advocate very much or recognize that I had a disability. I just thought “Wow, I suck with people, this must be why,” and left it at that.

No one explained a social model of disability to me that would have helped me understand the impact it had on me. One of my acquaintances looked up my diagnosis on Wikipedia, and that was how I understood it for the next several years. I already knew I had ADHD, so maybe I was just used to being told I had this and that.

It's not enough to tell someone their diagnosis and expect them to find out everything on their own. I mean, Wikipedia was the extent of knowledge found on my own. Some people may call that handholding, but I call it decency and saving someone a lot of pain and trying to find themselves. As it was, I didn't figure out anything about autism until I went to college and met a couple more autistic people, one of whom was already into neurodiversity.

I'll say that again:

It's not enough to tell someone their diagnosis and expect them to find out everything on their own.

Related:

Telling people they're autistic / autism is a disability

• https://chavisory.wordpress.com/2013/11/01/you-should-tell-your-kids-that-theyre-autistic/
• http://realsocialskills.org/post/115768491392/autism-is-a-disability
• http://realsocialskills.org/post/117695362833/autistic-kids-need-to-be-able-to-talk-about

Social model

• http://www.autismacceptancemonth.com/resources/101-3/ways-of-thinking-about-disability/social-model/
• https://autismthroughcats.wordpress.com/2014/08/21/disabled-not-disordered/

Autistic Pride Day 2015

For Autistic Pride Day, I want to look at where we've been. I want us to move forward together. 

*This is formatted to be linked to on Tumblr, hence talking about Autistic Tumblr.*

Where We've Been

Read this. It's where Autistic Tumblr has been.

Autistic Tumblr has been around for quite some time, starting small, growing ever larger. Of course, Autistic Tumblr is not the extent of activism in general, but I'm posting this on Tumblr, so I recommend reading it. @iamthethunder was actually there, so read that. I can't write to the history of Autistic Tumblr very well because I only popped up in 2013.

I also know that Tumblr isn't the beginning or end of activism, so. There are so many things we have participated in off Tumblr with people who are not on Tumblr. The history of autistic self advocacy as we know it tends to go back to 1993.

Autism is a particularly interesting part of neurodiversity. I don't say this just because I'm autistic. Neurodiversity was born out of the autistic community's desires to separate itself from a parent-based movement in the 1990s. I would argue that's a movement for a modern age, one that needs to be embraced.


“This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism. Therefore, when parents say, “I wish my child did not have autism, what they're really saying is, “I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.”

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure.”1 Jim Sinclair penned these words in 1993, and presented them at an autism conference as part of a larger piece entitled “Don't Mourn For Us.” It is largely considered the foundation piece of neurodiversity and the autistic self advocacy movement. Sinclair described the experience of being displayed at autism conferences “a self-narrating zoo exhibit,” where parents of autistic people would pepper them with questions about autism and not expect self advocacy. When Sinclair wrote Don't Mourn for Us, this surprised parents and created anger. Sinclair and others infiltrated listservs, conferences, and met other autistic people, and started talking for themselves. There was great controversy about this – they got kicked out of spaces quite frequently for being self advocates and activists.

Sinclair also created Autism Network International, a group comprised of listservs, forums and a print newsletter, with resources for autistic people, and also for parents of autistic people. ANI also hosted Autreat for many years, a space for autistic people to meet in person and have workshops.

ANI marked a fundamental split between parent groups at this point. Previously, advocacy work for autistics had been done under a cure culture mindset and by parents.

If one considers the larger disability rights framework, autistic self-advocacy developed particularly late, three years after the ADA was passed, in 1993. A group for autistics run by autistics that worked for change in public policy did not develop until 2006.

An example of when autistic advocates took a fight against cure culture occurred in 2007; Joseph Kras analyzed the response to the NYU Child Study Center’s attempt to raise negative awareness about autism and other psychological, psychiatric and neurological conditions. He writes that the “campaign consisted of several ransom notes posted on large billboards, ion kiosks, and at construction sites in New York City and published in Newsweek and New York Magazine.”2 The messages existed as dire warnings of what autism and the other conditions would do to people’s children. The Ransom Notes campaign response came swiftly, Kras notes, not in the form of lawyers arguing over whether it existed as a publicity stunt, but by a “grass-roots internet protest led by self advocates.”3

The president of the Autistic Self Advocacy Network (ASAN), Ari Ne’eman, posted a petition, emailed list-servs, garnered attention from multiple disability rights organizations, posted a sample letter on the ASAN website and distributed contact information for NYU and its board of directors. The arguments Kras describes them as using based themselves on concepts seen in Mel Baggs’ work in the 90s and again later, in the 2010s, after the Ransom Notes affair: that the ads stigmatized disabled people along with creating a sensation of doom that would not encourage parents to seek supports for their children, with the implication that disabled people should not be stigmatized but accepted and all disabled children and adults should receive the proper supports to navigate a world not made for them. 

It has largely been marked as the time when neurodiversity came of age.

Social media has been integral to these movements. This is a movement which is perfect for my generation and newer generations with ever expanding networks. 

Where Do We Want To Go?

Inclusion and intersectionality, in my honest opinion, have to be key components of anything moving forward (I do have a section for it on my Resources page). Autistics of color have routinely been shut out of leadership positions in the broad disability rights movement, but not because they have nothing to say. There is a reason why you don't hear about the Black Panthers working during the 504 sit-ins with disability rights activists, and it is difficult to locate autistics of color in the birth of the neurodiversity movement. They may have been relegated to lesser positions or denied opportunities to speak. Autistics of color are also misdiagnosed frequently, which could be another reason.

However, disability rights organizations in the United States are also starting to pay more attention to the regular mistreatment of Autistics of color. I credit autistics of color themselves for pushing for it. I look to see the day where marginalized communities can figure out a really great approach to intersectionality. Oppressions tend to layer within one another, from LGBTQIA and queer oppression to racism to ableism. I want communities to build up, and up, and up.

I also look to having a close-knit community.

As @iamthethunder said, “ I hope it starts to feel small, though, and that people here are never content, always reaching for what comes next.” Cohesive action will be the name of the game in forging new paths of autism acceptance. Caring about each other and working to put differences aside will help. I am already proud of Autistic Tumblr and being Autistic.

On this Autistic Pride Day 2015, I challenge you to not only have pride in being autistic (if you can't, that is OK too. I am not blaming any autistic person for how they feel about their autism), but to think outside the box in regards to forming a thoughtful, progressive community. I want communities to build up and never stop. I never want this community to be in a position where one loose Jenga tile can send it all falling down.





1Jim Sinclair, http://www.autreat.com/dont_mourn.html

2 Joseph F. Kras, “The “Ransom Notes” Affair: When the Neurodiversity Movement Came of Age,” Disability Studies Quarterly 10, no. 1 (2010).

3 Ibid.

Typed Words, Loud Voices: Review

Review of Typed Words, Loud Voices (edited by Amy Sequenzia and Elizabeth J. Grace)

First, read "Why This Book" by Amy Sequenzia, and get the entire point of the book.

“Because everyone has something to say" and "Everybody communicates. Words are beautiful. Our words have value." (pp. 10-11) Don't need much more than that to get your point across. Her introduction is short and concise, to the point. A bit of the personal story mixed into a question many people are undoubtedly asking, whether their voices count. Of course they do. 

Also read Elizabeth J. Grace's part of the introduction, iterating the point that that "scientific style testing is not a fitting a viable way to hear what we are saying about our own lives and experiences. An excellent way to understand us to really listen to what we have to say." (pg. 14) 

It's important to note that there is a disclaimer: not all these essays are about joy.  Not all these essays reflect disability in a positive light. This doesn't mean you should have pity or less acceptance for disabled people. These essays are published raw and full of their authors' truths.

So who is this book for? Who wrote this book? What visions are in this book? And would I recommend this book to you?

Who is this book for?

This book is for anyone who types. Anyone who types, part time or full time or wants to type, to know that they are not alone. This book is for the people who don't believe that autistic people have voices.

This book is for anyone who wants to learn more about autistic people's voices, typed or not.

Who wrote this book?

A global autistic and disabled community, people who type full or part time to get their messages across. Some authors are as young as six years old. They are autistic or disabled in a way that requires them to use alternative communication. They are girls, boys, men, women, people who identify outside the gender binary. They are in all grades of school or didn't attend traditional school.

What visions are in this book?

Correcting mistaken beliefs. This book has poetry in it (because autistic and disabled people can be poets), prose, memoir and vignettes, and other such writings.

The book's main goal is to correct the impression that people who use Facilitated Communication, or other types of communication, have no voices and no thoughts.

Sometimes, this book acknowledges that being disabled is hard. Being disabled is difficult in this world, especially one that places emphasis on spoken words. Mostly, the book illustrates the diversity of people who use alternative communication, and their lives that are still rich.

Would I recommend this book to you?

Yes, I would. It's written in a blend of poetry and prose and words that make your heart angry that some people would discount typed words. I would especially recommend it if you fall into a category of not believing disabled people's experiences and words.

someone told me I was expressive compared to this person once

(Crossposted on Tumblr)

I object to being compared to other autistic people like this. I think it’s unhelpful to do comparisons. The saying ‘you’ve met one autistic person, you’ve met one autistic person’ exists for a reason. Using someone else’s so-called expressiveness to justify an argument is not okay. They are not a prop.
Their faculty with words is not in direct comparison to mine.

(withasmoothroundstone I think wrote something along the lines that some people are “more autistic” in some areas to hir, and “less autistic” in some areas, and about the same in others - as in autistic people all share common traits, on varying planes of communication and sensory and other things - by the way, that’s the spectrum, not high to low).

I am not okay with using people as props, though.

And it also makes me wonder: what is expressive? What does the word expressive mean?

Because by all means, people would call me expressive. I have opinions and I have loud thoughts. But by loud I mean colorful, because my faculty on language out loud is not the greatest. I sound crass, blunt, angry, and full of swears.

But my favorite phrase is “I don’t know;” my hands flutter when people make eye contact with me for too long and I can’t think when they stare at me, interjecting placeholder words while I try to articulate. I can put together great presentations when I rehearse and script and have outlines, though. And I get passionate, if I know a lot about it.

But anyway, tl;dr

If your value rests on how well a person speaks, that their worth is directly related to how they present themselves, I question your value of what expressive is. 

#JusticeForKayleb and the school to prison pipeline

At age 11, Kayleb Moon-Robinson is a nearly convicted felon. His crime is kicking a trash can, then being unnecessarily restrained by a police officer, while autistic and black. He's not the only one. Virginia, where Kayleb lives, also leads the nation in putting students through the juvenile justice system.

The rates of the school to prison pipeline and rates of incarceration of black individuals is staggeringly high, including those with disabilities of all kinds. The Civil Rights Division of the Education Department reported in 2014 that “While black students represent 16% of student enrollment, they represent 27% of students referred to law enforcement and 31% of students subjected to a school-related arrest.” Read that again. They are subject to twice the rate of arrest than their actual population within the schools.

The Southern Poverty Law Center reported on Lousiana's record of discrimination. In it, there is a description of a black autistic girl – a 10 year old – having a meltdown in class and climbing out the window and up a tree. The police dragged her down from the tree and handcuffed her to the ground.

And no, it's not because black people are inherently more in need of arrest. They've been arrested as things simple as throwing Skittles. These are things I can imagine a lot of middle schoolers doing. The American Civil Liberties Union has some recommendations on what to do about it for schools, and it is clear that any solution must involve advocates of color.

And often, while disability can be a factor in the school to prison pipeline, disability advocacy focuses on the disability and leaves the race behind as a significant factor. I encourage any fellow white advocates reading this to examine the intersections of racism and ableism.

More

• All Day Justice For Kayleb Social Justice Event
• School to Prison Pipeline Fact Sheet
• Intersected, Justice for Kayleb Moon-Robinson
• Morenike Onaiwu, Justice for Kayleb NOW
• Petition and petition updates for Justice for Kayleb
• Why Does The US Incarcerate So Many People? Al Jazeera America
• Virginia Governor Asks How To Reverse Schools' Staggering Rate of Referrals to Cops and Courts
• Education Department Civil Rights Division: Protecting Civil Rights, Advancing Equity, 2013-2014
• Free Thought Project article on Kayleb
• The Grio article on Kayleb

Blogging Against Disablism Day 2015: One of the Lucky Ones?

(Please visit http://tinyurl.com/BADday2015) for more Blogging Against Disablism Posts)

I'm one of the lucky ones. I'm one of the lucky ones. Maybe. I do feel invisible. Mostly I feel lucky because I'm about to graduate. Here, have some official statistics of disability in higher education in the United States:

• Students with disabilities represented nearly 11 percent of all postsecondary students in 2008, according to a federal survey.¹
• The graduation rate in 2013 was “approximately 26%, half of the rate of students without disabilities.”²
• The National Council on Disability reported in 2003 that “ Resources in higher educational institutions are often inadequate, leaving disability service units in the position of having to make decisions based upon budgetary considerations rather than upon proven effectiveness (NCSPES, 2000).”³
• The National Center for Education Statistics reported in 2009 that “a few of the barriers cited by institutions as hindering implementation of Universal Design to a moderate or major extent were limited staff resources to provide faculty and staff training on accessibility issues (52%).”⁴
• Since many schools are understaffed, the importance placed on “school disability services offices collaborating with other campus offices, such as academic departments, counseling centers, financial aid, housing, student activities, special events, and career services, to provide the full range of services that students may need” becomes strained.⁵
• Many schools also do not have the proper resources in place to support students with varying psychological health needs.⁶
• In a report by the Association for the Study of Higher Education in 2013 on students with disabilities, it found that “students with disabilities may feel invisible on college campuses.”⁷
  • A solution to this, according to ASHE, is social change: “institutions must also move to create social change in their campus communities. The perception of students with disabilities must change in those individuals who do not identify with a disability.”⁸ It also indicated that “self-advocacy was a large component of their success, but it did not come easy.”⁹

But I'm one of the lucky ones, I'm graduating. I'm graduating. But I still feel invisible.

Because it is a double-edged sword. Being told to self advocate and then when you do, being told that you are hostile. I still feel invisible because I am not considered a minority. Disability is not considered a culture, though we got the disability group on campus into the cultural organization coalition. I do not see myself on campus. I see other people being far more successful academically. I see other people and few people disclose any disabilities on my campus.

I do. I do. I disclose at every opportunity. I tell them, “I'm Autistic,” and I gave speeches in my speech class in 2014 on autistic self advocacy, but I don't think they believed me and my social model of disability. I don't think they believed that I could have meltdowns and shutdowns and not be able to talk sometimes. I don't think they believed that the nonspeaking Autistic community could have a quality of life and want their lives because someone else was presenting on autism on the basis of her cousin being “low-functioning,” a term that is degrading and dehumanizing and ignorant of the facts of autism.

Places of higher learning must create social change. A community where people can disclose.

Places of higher learning need to care and devote budgetary concerns to programming and to having more than one staff person in their offices and concern themselves with more than straightforward academic concerns. Disability needs to be included at every turn everywhere that proclaims diversity and forced to be included in anywhere that does not even try to claim diversity.

Because I say to any place that tries to claim me as a diverse statistic: you cannot and may not, unless you are trying to include me and my disabled peers. I will tell the world you are not diverse in this regard.

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

1 Government Accountability Office, “Higher Education and Disability,” 2009. http://www.gao.gov/new.items/d1033.pdf

2 ASHE Higher Education Report, “Disability of College Campuses: An Overview,” 2013.

3 National Council on Disability, “People with Disabilities and Postsecondary Education -- Position Paper,” Sept. 2003: http://www.ncd.gov/publications/2003/Sept152003

4 National Center for Education Statistics, 2009. http://nces.ed.gov/pubs2011/2011018.pdf pg. 4

5 Government Accountability Office, “Report on Higher Education and Disability,” 2009. http://www.gao.gov/new.items/d1033.pdf

6  Ibid.

7 ASHE Higher Education Report, “Disability on College Campus: An Overview,” 2013.

8 Ibid.

9 Ibid.   

Acceptance Is (Autism Acceptance Month 2015)

Acceptance Is (Autism Acceptance Month 2015) 

cross-posted on Tumblr

I just re-read the story of Jess Wilson and her daughter Brooke with Brooke's grandfather (Jess's father). How he did not make Brooke give him a hug until she was ready.

(I can understand why parents and relatives want hugs and kisses and touch and verbal affection. It is society's normal, and it is not their fault that everyone expects it).

But acceptance is respect. Acceptance is knowing that even if you want it, an Autistic person's dignity and autonomy and right to choose what kinds of affection to display is more important. Acceptance is knowing that a nonspeaking person doesn't have to say “I love you” out loud to communicate the sentiment.

Some would say acceptance is not fighting to save an Autistic person, accepting defeat. But quack cures and forced exposure to unpleasant, painful stimuli and compliance training will not, because these inverventions can do much harm, and an autistic person does not need to be saved from autism.

(I can understand why a culture that tells us being autistic is wrong can have an impact on people, and the professionals will tell people that 40 hours of ABA is necessary to have an impact).

But I would argue that acceptance is love and love is what nurtures anyone. Acceptance is love and respect. Acceptance should show with people's actions. It's not enough to say you accept someone and then try to change them into someone they are not.

For instance, extinguishing stimming because it's “embarrassing” or forcing them to look you in the face or forcing someone to look in other people's faces would not be acceptance. Some good examples of acceptance include what Brooke's grandfather did, above; actively working to dispel myths about autism; listening to someone's behavior instead of dismissing it; listening to Autistic people and boosting their voices; and working to raise a generation of Autistic people respectfully.

Acceptance is also hoping there will be more generations of autistic people instead of an attempt at preventing us. We should be here. The world would lose part of its diversity without us. And we have a right to exist.

Other Autistic People Taught Me What Autism Means (Video)

Oh look a video.

Transcript, though captioned (fairly) accurately:

Rough transcript, captions should be listed at some point on the video.  I wrote in my own and it’s setting the timings?

This is an address to parents and people who care for and assist autistic people.

I have been feeling *more* autistic lately, if that makes sense – just using echoes more, realizing scripts more, thinking about things I do. I mean, I flapped at a cat for five minutes the other day.

To other Autistic people…

I stim more, I am more open… and I that’s because I follow so many people on Tumblr and talk on Facebook a lot with people.

Being around other Autistic people is important.

Being around other Autistic people lets you know you can do things with them and also on your own, when situations permit. It gives you almost an internal permission to let go. When I started the k-pagination blog, I was like “Will only write activism posts and reblog activism posts. Serious stuff.” And now it’s just… I need the joy of being Autistic. I will write posts that might seem a bit silly. I will start tagging with the echoes I always had in my head and never used.

Being around other Autistic people is important.

If you’re a parent or caregiver, reading this, let your autistic kids and adults (if you have legal guardianship or something), be around other Autistic people. Don’t isolate them from neurodivergence. That in of itself can be as harmful as a physical seclusion room.

This is not my usual, long and flowing eloquent and bit detached activism. This is an autistic person asking for people to respect lived experiences. I was like your child.

I climbed trees, I ran around shrieking and screaming all the time, and even if I did now, it wouldn’t make me less than. I did a lot of things in those alarmist documentaries. I am worthy of dignity and autonomy. So are your kids and relatives, whether nonspeaking or speaking or need aides and what level of supports they need.

And other Autistic people are the ones who taught me self advocacy and activism. It was just a label before I met Autistic people I talk to and call friends and acquaintances and respect. Though psychiatrists and psychologists can be useful, other Autistic people taught me what autism means, not them.

And to Autistic people watching this, you have the right to be around other Autistic people and talk and share your experiences, and have validation.

A response to “Penn ethicists call for the return of the mental asylum”

Originally posted on Tumblr (k-pagination.tumblr.com)

A response to “Penn ethicists call for the return of the mental asylum”

Adapted from Facebook.

Summary [tw mental institutions at link]: UPenn bioethicists are proposing for the return of a patient-controlled mental asylum that would help keep the mentally ill out of prisons and with a place to stay so they are not homeless.

In 1977, Judi Chamberlin, a former mental patient, wrote, “The whole experience of mental hospitalization promotes weakness and dependency. Not only are the lives of the patients controlled, but the patients are constantly told that such control is for their own good, which they are unable to see because of their mental illness. Patients become unable to trust their own judgment, become indecisive, overly submissive to authority, frightened of the outside world. The antitherapeutic nature of mental hospitalization has long been recognized.”

We need community supports. It has been known by mental patients who founded their own liberation movements and their own support groups. It was legally ruled as such for states in 1999 in Olmstead v. L.C., which mandated that states must provide community integration supports before institutions.

State-run or not, we should not be in institutions.

If the problem is that we are going into prisons and into the streets, then there are not enough community supports in place.

The principle of “charity” that said it would be more humane to house us in institutions to get us off the street is what caused the original burst of institutions. What makes anyone think this would be different?

The article says “He envisions asylums built in a campuslike environment with varying degrees of security. They would be “patient-centered and collaborative,” and “modeled on the principles of the recovery movement, which emphasizes patient autonomy to the extent that that’s possible.”

The first problem is that “varying degrees of security” - no one would be free of the institution, to come and go as they please. “Security” translates to “they only leave and go places when we tell them to.” Additionally, the “patient autonomy to the extent that that’s possible” part essentially leaves that in control of the “professionals” - the extent to which patients can make decisions becomes largely dominated by the professionals.

The second problem is places have already tried that and it failed because the staff ended up mostly controlling it, even if it started out perfectly “come and go as you please” (see: Fountain House). The division between those seen as “sick” and “needing help” and the “normal” and “helpers” tends to get very wide very quickly. It is also kind of a slippery slope thing where you can start a place with the best of intentions and it all goes wrong, and then more institutions will happen and we’ll be back in the 1940s, 50s, 60s, 70s before you know it.

Judi Chamberlin also wrote: “A tremendous gulf exists between patients and staff in mental institutions. Patients are seen as sick, untrustworthy, and needing constant supervision. Staff members are seen as competent, knowledgeable natural leaders.”
This is still largely the case with stigma against mental illness and disability. The stigma is too pervasive for that to even begin to work - with any level of “staff member.”

No amount of mental institutions will help the mentally ill in the long run. These places damage people’s self-worth. They create a sense that the person cannot return to the outside world, that the person is broken. No matter how altruistic the intentions, they do not work. At best, they trap people for significant periods of time in places with little to no freedom. At worst, they degrade into physical abuse, malnutrition, overcrowding, and injury. Best or worst, they depersonalize, dehumanize, and remove control from people.

Dressing While Disabled (And Agender)

#DressingWhileDisabled (And Agender)

**

I hop. And fall into a chair. My dyspraxia is not good for full body movements in contained areas. I try to tug on the socks. I have to go sit on my bed.

**

I have weak ankles, and I don't want to try wearing heels, I say.

Fair enough, the friend responds.

I do have weak ankles. I sprained each one twice before I was 12 years old, running around and climbing things like the autistic kids you see in the alarmist documentaries (well, because I'm autistic. I did things like that. Unsurprisingly, I was like a lot of the autistic kids you see in the alarmist documentaries or the parents insisting us activists are too high functioning to understand).

But I also don't say: I don't think I could balance. I think I'd fall. I'd embarrass myself.

**

Recently, I've undone enough of my internalized fear of dressing nicely or fashionably-ish because that's how the people who bullied me in middle school and high school dressed like, and also undone the notion that to be nonbinary and agender, you can't wear gendered clothes.

I used to say that, as I walked around in “guy” jeans.

I tried on a dress in Target yesterday, because it felt sensory friendly and floaty. I realized this after wearing a nightshirt for the first time.

**

But I lack the executive functioning to remember how to fashion myself appropriately. I fall down over my shoelaces because I lack the coordination to tie them effectively, or forget to even try. I cannot remember to go buy the clothes. It took an entire winter to realize I didn't have enough long pants, and that's why I needed to do laundry so often.

Which, by the way, is hard. Laundry is hard.

I emailed my mother. I need sweatpants. Can you take me to Target?

We went to Target and bought sweatpants.

**

Sometimes, it's not an Autistic thing. I have anxiety and various mood things. It can be hard to roll out of bed and put on clothes effectively, or brush my hair, or tie my shoes, as I bump into a chair and swear groggily.

**

I am Autistic, and dressing while disabled can involve so many steps I forget to do all of them.

I don't mind, to be honest.

Response to Tumblr Ask on 9-12-14

http://k-pagination.tumblr.com/post/102451828204/do-you-oppose-research-for-cure-for-autism-or-do

Nov 12 2014

Do you oppose research for cure for autism? Or do you prefer to see kids being dysfunctional and unable to communicate?

— Asked by Anonymous

What is, exactly, your idea of functional? “Functioning” is a very, very arbitrary word that has been used to dehumanize us (and other disabled people) since its creation. Is this a quality of life judgment, where you’re going to tell us how much we suffer and that our lives must not be worth living if we’re Autistic, so cure us?

What is, exactly, your idea of communication? Because verbal speech is too emphasized in this society. It’s not the only way. Behavior is communication. I know people who have entire conversations without talking or typing.

Do you support the idea of curing children who haven’t had a chance to even figure out what their neurology even is, who may not have had a chance to escape the toxicity of the world around them that tells them their neurology is wrong to the point where they don’t know how to think otherwise?

Do you oppose the voices of Autistic people (those of us who talk with spoken words, those of us who don’t, the ones you say who wouldn’t be able to communicate, but are communicating right in front of you, via typing, text to speech, AAC, and behavior)?

Your ask is incredibly dehumanizing. Real question: Do you oppose us being humanized?

(Short answer: Yes, I oppose cure research.)

An Open Letter to Journalists, Bloggers, and People: A Violent Narrative

Autistic people and other disabled people are victims both of violence and of the myth-perpetuating articles and posts that crop up every time one of us is killed or abused.

It’s about “not enough services.”

It’s that the disabled person was “violent.”

The disabled person was “burdensome.”

The disabled person was [tw: murder of Nancy Fitzmaurice] “suffering too much to live.”

I am always disturbed by the ways in which the abuse and murders are justified. I want to read articles without being unsurprised by the fact that we have, yet again, been called burdens. I want to be able to read articles and be surprised if that happens, to have it not be the norm.

The deaths of the disabled have never been about us. Even in death, we are rejected sympathy and mourning. We (activists) should not have to spend all our energy trying to convince people that our lives are, in fact, worth as much as the non-disabled lives and defending our dead and abused. We should be able to spend our energy on just making disabled lives better, on helping each other through life, regardless of whatever we do in the traditional, societal sense of productivity.

My friend wrote that:

“London McCabe was a wanted child.

If you are a blogger or journalist telling the story, know that much.  Get that right.  Even if no one in his biological family wanted this boy, the autistic community did.  We wanted to enjoy sharing life and our affection with him. We wanted to help him grow into the best and happiest person he could be and have a wonderful life…”

The stories do not focus on this.

The stories that say [tw: ableism] “Oregon autism death raises awareness of how to help overwhelmed families” are what happen. The stories say that being overwhelmed makes it more acceptable to kill disabled people; the stories say that if we don’t get more services for these families, the children are at risk. And they are, but not because they deserve it or are “burdensome,” but because people buy into the fact that our “burdensome” existence can in fact justify the abuse, deaths and murders.

With every contribution to the narrative that lack of services make it acceptable, with every post that forces us to defend the dead we are trying to mourn, with every excuse thrown out to try and downplay what would be a horrific act if done to a non-disabled person, [tw: list of murdered disabled people] the disability community is put more and more at risk.

We are asking for your acceptance. We have your awareness of how “burdensome” we must be. Change the narrative into one not of awareness, but of acceptance of us as people.

Helping Each Other Cope

Helping Each Other Cope

I feel like we also need to talk about what else we can do when this happens, when we lose Autistic or other disabled people to violence, besides just talking about it and writing about it and letting everyone know what happened and that it is not okay and we should all mourn the loss.

We should do all of those things, but as I’m seeing many, many posts about what happened, I’m seeing little about what we can do to help each other cope.

I had a bad day yesterday. I do not usually post about bad days publicly. But it was a bad day; I was upset about London McCabe, to the point of blanking out and having severe anxiety and alternating between anger and feeling extremely sad and distressed. Today was better, but I have some things to work through, and am taking necessary steps to help address it.

These events remind us of our own mortality, and of the fact that people think that it can be excusable, and of the fact that we lost someone at all who deserved to live regardless of what they could have done by traditional measures. I am pretty sure none of us actively forget about these things, but when it happens, the aftermath can bring those reminders to intense, almost or actually unbearable levels.

I will be trying to work on ways to help us cope in these aftermaths, perhaps a group area online, a large master post of resources, a list of people who are willing to talk to someone about their feelings. These ideas will have to be finessed and worked on, of course. Any other suggestions will be welcome. Comment here, message at k-pagination on Tumblr, or email me if

• you have suggestions for masterposts I can compile
• suggestions for a group forum that would be manageable and not out of control
• feel like you would be able to provide support for people via Skype or other forms of instant message, including Facebook.

—— (This would mean your information in these regards would  have to be available for those who ask. Potentially, I feel, I would have a list and then message the people on the list to see how they are feeling/if they are able to talk to someone, so the information wouldn’t just be everywhere on the internet.) ——

• You know of any open, free and accessible counseling places available physically or online that have actively demonstrated they are not ableist, sexist, racist, queerphobic, transphobic, bigoted, etc. and that they would not undermine the purpose/identity of the person seeking assistance and counseling.

You can also email me at silverbrook.aka.silva@gmail.com or message me at https://www.facebook.com/pages/Paginated-Thoughts/742852935779780

The Only Victim

The Only Victim (originally posted on Tumblr)

When I saw the news trending on Facebook, my heart sank. Another dead - murdered - child by their parent(s). My first thought upon seeing the news of another murdered child was “were they disabled?”

I read on. London McCabe was Autistic; and my worst fears confirmed: another person to mourn on March 1st, 2015, at our annual Day of Mourning.

He is the only victim here, even as I wait for people to proclaim his mother a martyr mom. It is awful to have a dead child in any situation, but the difference is that when the child was not disabled, everyone thinks it’s awful. When the child, like London, was disabled, many rush to make excuses as to why it happened, when there are none.

...

London McCabe, 6 years old, Autistic, thrown off a bridge to drown in Oregon. This is why we don’t need your awareness. This is why when you talk about awareness, we cringe. This is how the awareness works: everyone “knows” what autism is, everyone “knows” it’s some scary thing that makes parents’ life “battle-fatigued” and our murder “justified.”

This is why we need you to listen. This is why we need your acceptance.

Autistic Pride and What you Need to Know

[TW: Includes links to the abuse of Autistic people and violence against them, as well as "quiet hands" and seclusion.]
 
Autistics Speaking

Our methods of communication may not be what you are accustomed to. Sometimes we use assistive technology or just flapping intermingled with words to get the point across. But we all have things to say. Listen.

Pride

We can be proud and often are. We are proud of our neurodivergent brains. And have you ever seen a room of Autistic people flapplauding happily? Have you ever seen the joy we feel when stimming, which isn't just a negative response? Or just the pride in our ways of thinking and doing.

Being Autistic can be hard. Being Autistic can lead to more challenges in the world, but so many of those are based in a society which values spoken/verbal communication and an education system which views it as a compilation of deficits.

More importantly, autism is not something you can change about a person, or something you can cure; it is part of our neurology, hardwired into our brains, so why not be proud?

Also, have you ever seen someone's face light up when they get on their special subject? The way they communicate and move and they are the expert and they want to share? It's beautiful. I can tell you everything about cats, I can explain to you my dragons on Flight Rising, or describe every aspect of eugenic history: I can recite eugenics books in my sleep (almost), name top eugenicists, describe the way they described people, tell you what state passed the first sterilization law and when, who first came up with eugenics in the U.K. and that he was a cousin of Charles Darwin, inform you of how it made its way to Nazi Germany and that American eugenicist Harry Laughlin was later honored by Heidelberg University and he accepted it with pride.

Nightmares: Open Your Eyes to the Things that Happen

People have nightmares all the time. Being locked up in rooms, not knowing how to get out or when they ever will. Violent nightmares where they're at the hands of someone who wants to do them harm. A lot of us live these nightmares in seclusion rooms. We get punished for flapping or making a noise or dropping a pencil or moving in the wrong way or if we argue with someone we get put in a room, locked in. These things happen where we're supposed to be safe, places like schools, places where we're supposed to be able to get an education.

Some of us are afraid, not so much from random strangers on the street but from the people who claim to love us. Some of us are the victims of violence and abuse that's either called self-defense or therapy, like Issy Stapleton, whose mother called her violent and tried to kill her. Some of us don't make it out alive, like Alex Spourdalakis, drugged and stabbed to death. These things happen when we're supposed to be safe, places like our homes, places where we're supposed to be loved and supported.

Most people can wake up from nightmares, but some of us can't. We hold a vigil every year for the victims of violence. We unite to try and put an end to these things.

A Guidebook for the Non-Autistic: Things You Need to Recognize

• Presumption of competence, believing in our ability to learn and understand, will bring us farther than any abusive therapies.
• We are marginalized, but we're still here and we will not be quiet; listen to us about things that concern us.
• Behavior is communication; do not assume behaviors have no reasons behind them, and do your best to understand.
• The same goes for watching us in public; we may look weird and different to you, but we have reasons and should not be shunned.
• Representation in the media is not accurate.
• We can provide valuable information on our disability and autism, and you should listen.
• The value of our lives are not less regardless of the level of support we need. We have the same rights to life, love, education, jobs, and living conditions as anyone else.
• Listen.

~
Kit Mead
Autistics Speaking Day 2014

The Problem Isn't "Infighting"

Recently, I posted “Polarization” and “When You're Not Loud and Angry Enough” on here, and on Tumblr. Discussions have sprung up, and I hope they continue, because the way the Autistic community treats other members of the community needs a fair amount of addressing. The discussions that have been started on Tumblr following those posts are not “in-fighting,” as I've seen the discussions called. I'm going to get more specific here and less jargon-filled than those posts and also add on extended commentary to reactions I've seen to the posts.

–

There are no such thing as good Autistics and bad Autistics, to be explicit. If good Autistic people are accused of sucking up to NTs and non-autistics and bad Autistic people are the heroes who actually call out people, how on earth do you expect solidarity within a community when people are trying to strike a divide? I know people who, on Facebook, Tumblr, elsewhere, who have been told that they are just goody-goodies and that they have no place in activism. It could have been me.

When you talk about a community, you take into account everyone. The people who feel guilt because they pass as neurotypical, the people who don't take pride in being Autistic, the people who maybe even want a cure, the people who feel guilty because they don't always have the capability of fighting every battle, the people who need accommodations, the people who need support staff, the people who need neither, and the list goes on.

You take into account the people who disagree with you.

The original posts were never about allies, and I did write it as a semi-response to the TPGA debacle – but not from the perspective of ally worthiness. I see people taking it that way anyway. The posts were about that there is often no room for disagreement in this discourse, and more importantly, that the way people are treated (like me, and others) when we disagree, people yell at us.

I should not have to constantly remove myself from Autistic spaces because people are being abusive with their language and treatment of other people, Autistic or neurotypical, to be clear. This is not tone-policing, as someone told me it was. It is not tone-policing to request a stop to the endless barrage of explosions and abusive language. And abusive language doesn't even have to be in all capital letters, to be honest: it comes in the form of “you disagree with me, so here's why you should screw off.”

The problem isn't the “infighting.” The problem is the continued mantra that asking people to stop being flat out mean and abusive is silencing, but yelling and intimidation are not silencing, and if you say they are, you are tone-policing.

When You're Not "Loud and Angry Enough"

We clearly need to figure something out, as a community. When the Autistic community has scared a good amount of Autistic people into not being able to say things, what has it become? I was one of them, for a while. I’m not going into direct confrontations on Facebook (I don’t have spoons to deal with the arguing that would happen), but I’m writing this post.

The goal of a community is to not echo-chamber itself into only allowing certain ideas and viewpoints into it, which, frankly, has been a lot of what I’m seeing. People are attracted to the ideal that explosive, sometimes abusive behavior is okay when you’re part of an oppressed group. We as a community have dealt with a lot of pain. We’ve lost a lot of children, teenagers and adults to caretakers, and we’ve been abused in the name of therapy. I would not deny this community anger at things that have been done and are still being done.

The echo-chambering I’m seeing, though, is that if you’re not loud and angry and constantly scouring the bits of the Internet to confront and call out people, you are too polite and constantly want to make nice. The echo-chambering I’m seeing is permitting the silencing of some Autistic people through fear while saying that you’re being silenced when someone has a different opinion than you or wants you to stop yelling.

The dynamics of a community, the fabric of its being, does not rely on explosive techniques. The explosiveness I can no longer be quiet about drives potential allies and newly diagnosed Autistic people away as an unsafe space, and more importantly, many Autistic people may look at this community and wonder what is getting done, wonder if they even want to be part of it, and credibility is damaged. And what will we tell the people who aren’t privy to our conversations and are not able to join in, who may rely on us to help enact change in the community and society? What then?

Polarization

Polarization

 

I am sometimes afraid of “Autistic spaces.” I get afraid of the fact that hey, if I don’t like the fact that people are yelling about things because I have trauma in my past related to intense anger/yelling/emotional abuse… I’ll be told I’m tone-policing, that I’m a goody-goody with the neurotypicals and non-autistics.

“If you don’t like our anger, just leave, if you don’t like our anger, you’re trying to silence us.”

I am not trying to silence anyone.

There is a difference between explosive anger and righteous anger.

There is a difference between calling someone out and completely lambasting them into the next century with an explosion.

I’m trying to navigate a world of activism where if I disagree with someone, I might get yelled at – by other Autistics, of all people. I’m trying to tread a line between telling someone to stop triggering me and tone policing.

You can’t claim to want a safe space for Autistic people, then summarily explode at other Autistics who disagree with you because yes, we have other opinions, and no, it’s not because we just want to suck up to neurotypicals and non-autistics. Sometimes we have other methods of activism that still include calling people out.

It has a polarizing effect on the community. When people accuse us, the less angry-sounding, of being textbooks for neurotypicals, have you considered: maybe we don’t always have the energy to fight every battle? Maybe we don’t have the energy to yell and scream? Maybe we also don’t feel like triggering other people with explosive language?

I should not feel unsafe in Autistic and autism community spaces both from neurotypicals/non-autistics and other Autistic people.

Maybe, in Poetry... Reflections on My Autistic Pride Poetry

TW: Abuse, murder, electric shock mention, links to things on "quiet hands"

I successfully read my poems, "Writing out Infinity: Autistic Pride" and (tw: ableism, violence, murder mentions) "Power Structures" at the 100 Thousand Poets for Change event on Saturday, September 27.

 I received an email later telling me that my poems had touched their heart. It made the fear of standing up in front of people with that microphone, staring at the papers in my hands, trying to put conviction in my voice because I am the authority standing up there on the stage and I know being Autistic is not shameful and I know all the things that have been done to us, worth it. 

I wasn't sure they would understand what I meant by neurodiversity or by infinity, or or the description of stims. I wasn't sure people would understand what I meant by people being afraid to move their hands, or people being afraid to be Autistic in a world that sympathizes with our abusers and murderers, and the innumerable counts of abuse done to us through electric shock and aversive therapies and forced normalization and telling people they can't move their hands and they cut our vocal cords because we scream too much. 

Maybe, in poetry, the graphic or specific details don't need to always be there. Maybe, in poetry, the conviction with which you say it will tell them it's true, will tell them they should look into it, will tell them to presume competence and believe me and tell them that we are not suffering burdens 

--and that we can love ourselves just as much as any non-disabled person.