vignettes from a psychiatric history on #worldbipolarday

I can tell you about all the time I have spent among the thyme
thinking of the dark Thames that river I’ve seen
both in TV shows and up close
its dark waters inviting me to sink in its good-bye waves and
ink its darkness on my arms and there is a river dell I see
when I close my eyes and wonder what Virginia Woolf felt in her river
a wolf in me is ready to jump through (s)now and fall through the ice.
Sometimes it’s frenetic energy with a voice of reason that
falls flatter than the paper thin hospital gown that I wore,
highlighter butterflies on my wrists.
I can (out)pace the world, wield
every word as a razor sharper than
the knives I wanted to use for an off label use.
I can be higher than the hills I once wanted to die on
and still see the rivers from on high.

When I was a child, I loathed my psychiatrist. He made me take tests every time I visited him. He condescended to me. He diagnosed me with anxiety and ADHD (accurate) and denied that I was autistic (inaccurate). He told me to focus, focus, focus, also calm down. I ended up throwing child toys at him. He put me on Clonidine first, then more ADHD meds.

I later found out he is held in high regard in the area of ADHD.

Seven years ago, I went on a potent drug ostensibly as an adjunct for a depression diagnosis at age 16. I don’t know what the psychiatrist knew about being angry all the time at home and aggressive at school. The drug gave me uncontrollable urges to move, far different from merely wanting to stim. My mother called the psychiatrist to explain that I seemed to feel like a “Mexican jumping bean.” The doctor prescribed a muscle relaxant.  

I later learned the side effect was akathisia and could have been much worse.

When I told a psychiatrist years later that I was aggressive in high school, he nodded.  “Yes, that’s why they put you on it.” He was an autism specialist a second hospital found and seemed to agree with the decision to put me on it.  “Well, now that you’re not aggressive, we could probably take you off of it.” Besides the issue I had with medicating for compliance, I already had tried to go off it several times. . No psychiatrist ever told me there would be withdrawal, even with tapering, that would last for months.

Each time was so hellish from withdrawal that I asked for it again.

In college, one time, I objected to eating outside on the campus quad on the grass – some of my friends wanted to. They went anyway. I ditched dinner and left the dining hall, almost in tears. I sat near my dorm building. Another friend found me there and asked if I was okay. I wanted to lie, to keep pretending that my brain hadn’t been trying to kill me for the past several months, to talk in circles around my friend and the thoughts. Instead “I don’t want to exist anymore” burst out like Gusher fruit snacks breaking open. My friend took me to our dorm’s resident assistant, who got me an appointment with the campus psychiatrist  for the next day. She upped the dosages of the medications that hadn’t been working.

I pretended things were fine after that.

Fourteen months since college graduation. I’d been at a new job seven months. Six months since the first psych hospitalization. One month since the second. There were still people who didn’t know about them. My mother, who was in town, mentioned I had been published. We were at a lunch table with relatives. But the publication was on my experience with those hospitalizations. My cousin asked if they could read it and I realized a hole had been dug, pushing the conversation in a dangerous direction. “It’s something I don’t really want relatives to read,” I said. I pushed dirt back in the hole the same way I used to pat down the earth around flowers and herbs in the garden, alone.

I pushed dirt back in the hole the way I once imagined filling my early grave.


The featured image for this post is a neurodiversity necklace from Spacerobot Studio for a reason. The need for neurodiversity and mental health movements to intersect is vital.

Not every person with a mental health disability has to see it through the neurodiversity framing, but we should be at times working together to push back against the narratives that frame autistic people, people with intellectual or cognitive disabilities, people with mental health disabilities, as inherently Other. Ableism manifests in different ways toward disabilities that have been categorized in different ways. But the end message is of Other.

As we approach Autism Acceptance Month, we should take care to remember that neurodiversity values all kinds of minds.

Teach Autistic Youth They Have a Community (Part One)

Other Autistics have written on the importance of disclosing an autism diagnosis to children. I fully agree. I also think knowing a diagnosis is a powerful tool in many ways, but it is not the only obligation of parents. I knew immediately about my ADHD diagnosis at age 7 or 8, then later my autism diagnosis at 14. I didn’t know I was disabled until college.

Many adults in my life told me I had ADHD. They just said it made me hyper, and gave me attention issues… then kept saying the same positive things about me: Smart. Unique. Creative. Reads a lot. When I got my autism diagnosis, they started saying: Smart. Reads a lot. Very high-functioning. Uniquely aware [of the diagnosis]. When they spoke of things I struggled with – like attention issues, staying organized, being polite, and making the right words happen – it was not to acknowledge disability, only deficit. It was not to work with me or discuss ways other people could adapt. I needed to adapt to the world, except for some accommodations.

They tried to quantify my life into skills and deficits. They told me I was more aware than others – like those in the special education classrooms – despite those kids being the most accepting of me when I hung out in their classrooms. I learned my deficits outweighed other qualities. I learned that there was no one else at all like me. I learned that I was alone. Not knowing what the diagnosis meant affected the ability to find friends, worsened depressive episodes and anxiety, and increased social isolation.

In my younger years, I had been able to get by through extensive book reading, writing fiction, and other solo activities. As I aged, my differences became more apparent. I wondered why I couldn’t be like everyone else or have friends. I had about one close friend in my high school years – an online one who meant a great deal to me. We couldn’t meet up in person, which I wanted desperately.  I wouldn’t know anything else but isolation until college – and making two autistic friends, along with a couple of others who accepted me.

The diagnosis given to me answered the question why for why I worked the way I did. No one helped me understand how it made my brain and body work. No one explained that it is a disability with ups and downs and effects from society. No one aided me in accessing community and culture. The diagnosis did not simply hand me all the tools I needed for life, in of itself. Community, once I found it, did.

Much of the autistic community may exist online, but it is vital. It will give youth access to writings by other autistic people. It gives them access to people who have written or know about coping tools, self-advocacy, and policy issues. It gives autistic youth an autistic culture. Parents (and other adults interacting with autistic youth), please explain autism to autistic youth. Please tell them more than a diagnosis. Please help them find other autistic people. If you don’t know the answers to their questions about autism, ask autistic people. It will change their world at least as much as telling them the diagnosis.



Part Two (Upcoming): Tips and Ways to Teach about Community

2016 was lighting candles to mourn, but it was also carrying torches high

Year in Review: 2016

 Disability Rights, State of the Blogger, and Looking Ahead to 2017


  • Progress in 2016
    • #CripTheVote and disability on stage in U.S. politics
    • Disability Intersectionality Summit
    • Other moments in disability rights
  • State of the Blogger
    • Overview of the blogger’s 2016
    • Looking at, and valuing, disability and autistic history
    • Top five viewed posts and pages
    • Posts and pages that I liked but had fewer views
  • Looking Ahead
    • 2016 as an atypical year and the blogger’s plans for 2017
  • Conclusion

Progress 

#CripTheVote and disability on stage in U.S. politics

cripthevote-2

The logo of #CripTheVote, designed by Mike Mort. Blue text reads: #CripTheVote. There is graphic-design image of a voting ballot box with a ballot being dropped in. The ballot box has four blue squares, with line art in white of the standard wheelchair user disability icon, a brain, a pair of hands signing, and a person walking with a cane.

 

In 2016, Alice Wong (Disability Visibility Project, which chronicles disability stories), Andrew Pulrang (Disability Thinking blog and Center for Disability Rights), and Gregg Beratan started #CripTheVote, which is

a nonpartisan campaign to engage both voters and politicians in a productive discussion about disability issues in the United States, with the hope that Disability takes on greater prominence within the American political landscape. We hope to encourage people with disabilities to engage with the election at all levels from President on down, and to vote. We also want to hear candidates engage with disability policy issues and disabled people as much as possible.

They hosted Twitter chats, provided resources to disabled voters, and sparked a more organized engagement with politics from the disability community. It brought disability to the stage of politics in a major way, and enabled disabled people to have a central platform to organize around and put their resources and news.

Hillary Clinton released an autism plan and announced support of the Disability Integration Act after an autistic person stood up and asked if she supported it, leading to then-candidate Bernie Sanders co-sponsoring the bill. Then at the Democratic National Convention, a disabled person – disability rights activist Anastasia Somoza – took the stage. 2016 was the year, as Dylan Matthews writes, that disability rights broke through in national politics and disabled people became seen as a constituency by politicians.

Disability Intersectionality Summit

This year, the Disability Policy Consortium accepted proposals and held a Disability Intersectionality Summit. Presentations included topics on the intersections of being undocumented, being LGBTQ+, being a person of color, having mental health disabilities, on #DisabilityTooWhite – the hashtag and movement around the the disability community’s failure to represent racially diverse voices – and more. It was held in Boston on November 5.

Other moments in disability rights include: 

Disability rights groups struck a major blow to sheltered workshops.  Maryland voted to end subminimum wage. An investigation has finally opened into Illinois’ group homes for disabled people. A major Minnesota job provider for disabled people agreed to reform its hiring practices. Michigan banned non-emergency restraint and seclusion for disabled students. Georgia’s governor spoke in favor of Employment First policies for disabled people in Georgia.

The FDA finally put out a proposed rule for banning contingent electric shock devices like those used at the Judge Rotenberg Center. A major case involving a girl and her service dog went before the Supreme Court, and could open up an easier path for disabled students and their families to make schools comply with various laws. Litigation against Georgia’s substandard, segregated “education” system called GNETS for students with disabilities by the Department of Justice moved forward.


State of the Blogger

Overview of the blogger’s 2016

It was a hard year, like it was for many. I spent a serious amount of time dealing with badbrains. I wrote about the dehumanization of psychiatric wards here. I adopted a cat, though, so that makes up for a lot of things.

In terms of other advocacy, I continued volunteering for a non-profit’s social media that I have done since 2015. I also kept working for a non-profit that I been with since December and continued to blog. I began work on a great number of blogging projects like Autistic Community on Medium, and Welcome to the Autistic Community on Tumblr. I also ran Autistic History Month this year.

I also decided to turn my life experiences and history research into writings for publications and have published with the Establishment and the Deaf Poets Society on institutionalization and psychiatric wards, eugenics history and Buck v. Bell, and my experience with housing in college.

Looking at, and valuing, disabled and autistic history

In addition I have been working on my disability history/eugenics history blog more. I revamped my eugenics history 101 post into a downloadable PDF. and updated the resources list for that blog. I worry a lot about eugenics as a popular movement being back full force – it’s still here, in some areas and ways.

I also ran the Autistic History Month blog this year; a link compilation for autistic history can be found here and the posts for 2016 here. As Sarah Pripas-Kapit and I remarked in the closing post for Autistic History Month, history is essential to working for change today:

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… 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. -Kit Mead

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… 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. -Sarah Pripas-Kapit

Top five viewed posts and pages

Posts and pages that I liked but had fewer views


Looking Ahead

2016 as an atypical year and the blogger’s plans for 2017 

Like s.e. smith says, 2016 was not normal and therefore, we should not allow ourselves to long for 2016 and make it a crowning glory of years that we look back to sometime in the middle of 2017 and go “well, things were so much better then!”

I really recommend reading the post by s.e. smith for how we cannot normalize 2016 because it wasn’t normal. We lost a lot in 2016 and our state of politics has steadily descended into even more chaos than usual. It’s not like I particularly look forward to the next several years’ potential events, but I will take a lot of pride in being alongside many other great activists, working to keep what progress we have made.

In 2017, I will continue to update my post-election resources page and continue my advocacy work, sharing and disseminating resources. I will continue to blog about the things that mattered before this election, and will blog on the things that matter more now because of the election.


Conclusion

2016 may have been holding candles up against a darkening sky in mourning, but it was also keeping candles lit and torches high against rain and darkness. We made a lot of progress in many different areas, and we also lost a lot – but we have faced dark times before, though never like this. We will work against the rapidly encroaching darkness of night to be lighthouses in the fog and darkness for many ships. Torches held high, we face 2017 and the years to come.

Autistic Unemployment: False Solutions and the Tech Industry Narrative

A Response to the WIRED Article “Autistic People Can Solve Our Cybersecurity Crisis” by Kevin Pelphrey

I have a familial connection who used to work for a medical technology company. Her then-supervisor knew I’m autistic. Then-supervisor would ask familial connection if there was a way to get me involved with the company. Familial connection would inform then-supervisor that autistics were not all the same: that I was not, in fact, a software programmer and also could not read code at superspeed and catch errors. Repeat cycle several times.

(I am good with social media, perhaps. But I can barely scrape together rudimentary HTML to put jump links on the Resources page for this blog, and it took hours of Googling and many failed attempts. I can’t write CSS. I can’t write JavaScript. I can’t design webpages or websites.)

There is nothing wrong with autistics who are good or excel at coding and software programming and technology and mechanical things. Autistics who are good at those things definitely exist. There are many things wrong with assuming all autistics are the same, that we all have the innate ability to be computer, mechanical, and software geniuses. To take it a step further: it is also wrong to assume that autistic people are valuable because of a handful of us do possess that kind of technological and mechanical ability.  

(…We’re people and have a wide array of skillsets and interests, and some of us are really good at computers, like some non-autistic people are!)

Those things are what is wrong with the WIRED article “Autistic People Can Solve Our Cybersecurity Crisis,” along with many other direct messages and subtle implications (including a not-so-pleasant quote referring to autistic children growing up as “the coming tsunami of adults with autism”).

Author Kevin Pelphrey, director of the George Washington University’s autism research institute, argues that we can fix the 70-90% unemployment rate for autistics by hiring us in the cybersecurity industry. He further argues that the this industry has a shortage of labor, so hiring us would fix that problem. His main evidence behind this argument seems to be the fact of Alan Turing’s existence.

In his argument, he utterly dismisses autistics with intellectual and/or other cognitive disabilities as having worth by writing, “At the same time, more than three-quarters of cognitively able individuals with autism have aptitudes and interests that make them well suited to cybersecurity careers. These include being very analytical and detail-oriented as well as honest and respectful of rules.”

It’s hard to know where to begin with unpacking the ableism toward autistic people, especially autistics with cognitive and/or intellectual disabilities, in that quote. It employs a number of tropes, reminiscent of the film Rain Man and common literary tropes. Lastly, he simplifies the solution to a complex issue around employment the cybersecurity industry hiring “cognitively able” autistic people.

Since only some of us are good at tech and we are not, in fact, all Alan Turing, this proposed solution will result in employment for far fewer people than Pelphrey envisions. This is a grievous disservice to autistic people, many of whom are struggling to find employment – and quite often in fields other than tech. This article tells employers that autistic people are only good at tech. It tells the general public that our only redeeming quality is being good at tech, and that we are only worth something if we stop the “monumental waste of human talent.”

The author heads a research institute on autism, but rather distressingly, cannot seem to move past a trope that all autistic people should be employed in tech. Our skillsets and interests are as varied and diverse as autistic people’s traits are. If we want employment, we should receive support to work where we want to. We should receive support to engage in our interests. Our contributions are valuable, regardless of whether they are in the workplace.

The solution to the unemployment rates lies not with increasing supported employment to only one industry. Whether it is through a government vocational program or an autistic youth’s transition planning in school for adulthood or a disability advocacy group, it lies with increasing support for us to do what we want to do.

On #WorldMentalHealthDay

In much the same way I am tired of awareness for autism, I am tired of mental health awareness. I understand that autism is different from mental health disabilities, that there are also many autistic people with mental health disabilities who dislike autism awareness but don’t mind mental health awareness. I am not one of them.

When I hear you talk about awareness for mental health disabilities, when you say, “This is a serious condition affecting this many people,” or “this many people have a mental illness!” or “we need to focus on access to care,” I hear, much like many autistics hear the same when autism awareness campaigns occur:

We are an epidemic. We are a public health crisis (and get named as such). We are only DSM diagnoses and flight risks and patients and if we’re not trying to hide ourselves we are a failure to a model that teaches us the best patients are telling their stories of how they got better to end the stigma. We are merely the rates of our mental health disabilities among people.

In fact, I would argue that only having stories of getting better hurts those people who may not get better. And why can’t we talk about issues like employment (or better benefits for those who would have a hard time working), access to housing, before access to care? Access to care, if desired, should follow meeting basic needs. It’s a little hard to focus on any sort of treatment when basic needs aren’t being met.

I am tired of awareness. Why do we have more people talking about access to hospitalization instead of peer respite care? Where are our community-based supports? Where are our warmline projects to prevent crises? Where are our self-directed services? Where are they?

Autistics in Mental Health Crisis (second in a series)

Autistics in Crisis Part Two: Crisis Aversion or Resources We Need

But knowing all those things I talked about in part one would not have kept me out of their ERs (preventing the crises in the first place). Knowing all those things would not solve the systemic issues contributing to crises. There are a lot of reasons Autistic people have crises. Quality of care if accessed, past or current trauma, isolation, a lack of community mental health resources, and other systemic barriers – often alongside co-occurring mental health diagnoses – combine to put people in crisis mode.

Both access to and quality of mental health care are issues for Autistic people. Many of the Autistic people who do access mental health care have reported pressure to “treat” their autism, and other mistreatment by mental health professionals. Even among professionals who do not seek to “fix” autism, Autistics’ distinct and various methods of expressing emotion and language can leave unprepared professionals at a loss and Autistic patients frustrated. There are also other factors. Some have difficulty navigating the health care system and lack support. A large number of Autistics can’t afford care for any number of reasons.

One Autistic writer highlights many of the above systemic barriers in a piece on autism and suicide (suicide crises are not the only mental health crises that occur, but Autistic adults without intellectual disabilities are nine times more likely than non-autistics to die by suicide). The author also discusses unemployment along with barriers to autonomy and social connection as contributing factors to Autistics’ high suicide rates. Here are some of the solutions the author offers:

We can be attentive to people who seem isolated and intentionally include them. We can check up on people who are known to be struggling… We can make our community welcoming to newcomers who desperately need the shelter of Autistic space. We can spread the word about autism-friendly mental health services… We can advocate for policies that support independence, like employment first and walkable communities.

For me, it would have been really helpful to have a 24-hour drop-in center or peer respite center (an alternative program where people in crisis can stay, staffed by people who have experienced mental health needs) somewhere nearby. There weren’t other options for me to stay safe. One study has indicated that peer respite centers result in better outcomes (for a variety of mental health needs) than psychiatric inpatient treatment, and there is a growing evidence base for supporting peer respite centers. 

Another resource would be a mental health phone (and text-based as Autistics can have a hard time with phones) line geared for connecting a person with services or other peer support when they are not at a crisis point. They would get connected based on level of need and which care they wanted. It would have a diverse staff to help make sure people did not end up with people mistreating them if they have a certain identity. Some similar projects, though not quite with that scope, already exist. One project called Project Warmline – people who need someone to talk to can speak to someone who has mental health needs – is in Oregon and has received state funding. Some other warmlines are listed here. It is not inconceivable that these projects could expand. 

There are significant gaps in community-based mental health resources. There is also a failure to address systemic barriers for Autistic people and improve quality-of-life research and supports by the largest sources of autism-related funding. These factors create a complex push into crisis mode for many Autistics. We can push for policy changes and support one another as fellow Autistics.

. . .

This is the second in a series of posts.

Autistics in Mental Health Crisis (first in a series)

Autistics in Crisis Part One: The Personal or What I Wish Professionals Had Known

In January 2016, I sat in a large chair in the ER of George Washington University Hospital (GW), with my gown tied on backwards because I had never gone to a hospital for feeling unsafe and suicidal before. The ER nurses thought I would know how to tie a gown; I didn’t. Nurses came and went, occasionally conversing with me or asking questions while I waited on the social worker. Once she arrived, the social worker said to me, “more like Asperger’s, right?” I had told the nurses I was Autistic.

She didn’t seem to believe me when I corrected her.  “I’m Autistic.” It made me uneasy even in my fight or flight panic mode. At least it was something I could actually manage to put words to through rote memory. I gave her a rundown of why she should call me autistic as I had said, and I don’t know if she took any of it to heart. She also seemed to blame being autistic for my social isolation. I wish she had known that correcting someone’s statement of identity because of how they present is not okay. I wish she had known that a lot of my social isolation didn’t come from autism itself, but from factors like adjusting the area, where I was living in the area, and a lot of non-disabled people being weird about autism and visible neurodivergence.

The fluorescent lights hurt and left me with dancing spots of color in my vision. The chatter of nurses around me, other patients calling out (just wanting to go home), and the ringing of phones and intercom announcements pierced my hearing. I cried from emotional pain, but also from being in sensory hell. Not being someplace quiet and dim made it even more overwhelming.

Later that year, in June, the ER was bright and loud at Georgetown University Hospital, but I did tie my gown correctly this time. They took me to a quiet room so I could be in a less overloading area to talk to the resident, but then they brought me back to the main ER section. I wish both places had known that it’s really hard for Autistic people and people with sensory processing issues to be in an ER. I wish they would have tried to find a way to reduce the sensory input, like giving me earplugs, and putting up a partial curtain to block the lights.

At Georgetown’s ward, they were a lot kinder and had different expectations, though I still felt confined, because it was a psych ward. There weren’t the assumptions about autism this time. They gave me earplugs to help with the lack of absolute quiet on the ward. In the ward at GW, yes I was in a depressive episode. No, I didn’t want to talk to a bunch of people I didn’t know in a place I’d never been before (with no Internet or cell phone access). No, I didn’t want to go to groups – they should have stopped pressuring me. I’m Autistic. Strangers and new places are hard for me. I wish GW had known that.

. . .

This is part one in a series of an unknown number of posts.

 

How the Media and Society Objectify Disabled People

Introduction: Inspiration Porn 

The most recent example of inspiration porn has crossed my Twitter feed. It is that a Florida State University college football player sat down and had lunch with an autistic boy in a cafeteria. The story got picked up by the New York Times. I don’t fault the college football player very much, if it all (but I hope he asked the autistic student if the company would be welcome). The football player probably just saw a person likely excluded by classmates. He wanted to make sure the student was not alone. At worst, there is the element of pity involved, but the act itself was not ill-intended.

I do fault the Internet and the news media. We, disabled people, see these types of things spread like wildfire, time and time again:

  • A disabled person does something that a non-disabled person does, which often plays into the “supercrip” media model of disability
  • A non-disabled person treats a disabled person with kindness.
  • A non-disabled person helps a disabled person (whether the disabled person asked for help or not).

Two examples are the way the Internet took hold of the autistic store employee decorating a cake, and the employee at a Kentucky Qdoba helping a physically disabled woman eat when she asked for assistance. In the age of easy access to recording devices and uploads to YouTube, Facebook, and other social media platforms, these stories attain a viral ferocity. Journalists pick up on the fact that the video or story is trending across social media. News articles about the story crop up, fueling its spread even further.

We Could Be Next: The Risk of Being Filmed

The effects of these viral stories are quite damaging, even when one does not go to the most extreme consequences. Any one of us could be the next story by asking for help, or getting help even if we don’t want it. Since the conductor announcements of what train is approaching are hard to hear, a  blind person asks a subway stationmaster to help them get on the right train. An autistic person has a shutdown. Their friend helps them retreat to a quiet location without fanfare at the scene. A wheelchair user faces a curb cut, and they decide to complain to the city after finding another route. But a stranger rushes over anyway and helps get them over the curb cut. Someone could film any one of these situations and unleash the tidal wave of feel-good comments, shares, and news stories.

We are all too aware of the risk of being filmed for someone’s feel-good story (or for someone to mock, but that could be another post). We already face enormous pressure to not ask for help – to be the “supercrip” and “overcome” our disabilities – and the risk of being a viral story is yet another reason we might avoid asking for help when we need it.

Inspiration Porn Hides Key Issues

Inspiration porn also hides key social and policy issues. In “Inspiration Porn Further Disables the Disabled,” David Perry writes of these kinds of stories, “[the stories] all feature people doing good things. There’s nothing necessarily wrong with the content of these stories, of course, but the way they’re told conceals the real issues faced by the disability community… Inspiration porn makes us feel that everything is going to be OK.” Perry also wonders: Why isn’t the state of Kentucky providing community-based supports to the wheelchair user at Qdoba, so she doesn’t have to rely on strangers to help?

In the case of the autistic boy eating alone at school that we started off this post with, why has the school failed to model social inclusion? What about the scenario of the blind person asking for help getting on the correct train – why aren’t conductor announcements for arriving trains distinct and clear? And for the wheelchair user facing the curb cut – why is there a curb cut to begin with?

The Destruction of Privacy

They also destroy our right to privacy. As one writer in the blog post “Deprivation of privacy and other thoughts” points out, “persistently violating someone’s privacy over time also just establishes a standard (to both that person and everyone around them) that it’s acceptable to persistently violate their privacy over time.” Even if we haven’t had our privacy eroded over time, often journalists publish our names, even if the original poster of the video or story did not. Everyone now knows us as “the person in that inspirational video,” and the person helping as our hero. The instantaneous destruction of privacy tells society that it is acceptable to sacrifice our privacy to make a feel-good news story, and to do it to any disabled person… over and over again.

How It’s Toxic for Us

Finally, we notice when we get objectified as inspiration porn. We feel objectified. It is toxic. Being objectified hurts our self-image and mental health. It erodes our ability to feel safe and like we can have even some privacy. It hampers our ability to set boundaries around privacy. It makes us feel like we have no control over our life and story. We notice, and it hurts in more ways than one.

Conclusion: The Vicious Cycle 

And of course, the way these viral stories get reported and commented on further a vicious cycle, encompassed in the following:

  1. We (disabled people) get seen as other – less than human, or a lower level of human.
  2. Because we are other, acts of kindness toward us seem newsworthy. We are not real people, after all. We are other. Kindness toward unpeople is as newsworthy as large-scale natural disasters and transportation accidents.
  3. The writers of these news stories objectify us. We are pity objects and have no agency. We exist to make people feel good about their deeds. We reach the bare minimum of humanity, if we are human at all. They make us seem other by teaching people that it’s a miracle anyone is nice to us at all.
  4. We get seen as other. Kindness toward us is newsworthy. We get objectified. People learn that being nice to us is miraculous. We get seen as other… 

But we are here and human. We can tell our own stories, if anyone bothers to ask. If no one asks, we tell them anyway. We can be our own advocates, and we can also be activists and writers and professionals. The Developmental Disabilities Act says “disability is a natural part of human experience,” and this is true. It is past time that non-disabled people get accustomed to seeing disabled people in their midst as normal rather than as a news story.

 

You call me expressive and miss the struggle it takes

Someone, back when I was in college, insisted I was expressive compared to an Autistic 10-year-old she knew: Yeah, but you’re different, you’re expressive. This post could go in a few different directions that I’d like to list because there were so many issues I (still) have with that statement:

  • that’s it’s okay to not be a wordsmith out loud or at all;
  • that comparing two people with an age difference of ten years – or comparing Autistic people to each other at all like that – isn’t useful;
  • that expressiveness doesn’t just come with words, so stop discounting people who don’t do them out loud well or at all;

and

  • my personal experience with the concept of expressiveness, movement, speech, and trying to go fast to keep up.

I chose the last one.

I may think in words, not pictures or concepts – but getting the worded thoughts to speech is another task entirely. Spontaneous conversation is hard. There’s this thing I do, which is simultaneously talk really fast, and not say half of what I wanted or meant to say. The speed at which conversations go doesn’t always give me the time to say the appropriate thing, so I spit out then closest thing in my head to what I mean. Sometimes it’s the wrong thing or makes no sense.

I don’t use spoken echolalia from pop culture and people around me so much as I use the same format for sentences over and over again, slipping in different words – or I stumble through words, speaking quickly but not always coherently.

I move in the same way I talk: scuffing and stumbling on stray objects. I can’t always find my body in space; I can’t always figure out object proximity because of visual processing and go crashing into it. I can’t cut food or tie shoelaces effectively, and learning how to do needlework was a short-lived venture. My feet drag the ground when I walk or I put my feet down with unnecessary force; there isn’t an in-between. Door frames are my enemy.

Or: I rock to other people’s rocking, flap to other people’s flapping, turn to look in the same direction as anyone I’m with – I’m echopraxic and copy movements. Or I don’t remember how to move at all. If I move, it’s fast, though – and it takes a lot of work.

I am tired of trying to move fast in conversations with non-autistic people (and sometimes other autistic folks). I am tired of the fast pace of movement I set for myself, lest I fall behind non-autistic standards. I am tired that the ways I communicate and move don’t seem to be enough for a lot of people.

Or, if you flip that coin, I am tired of the way people dismiss the struggle to move fast and the struggle to sound like I know what I’m talking about and call me expressive. 

I want to learn to stop going so fast. I want to learn that it’s okay for me to take long pauses, stimming idly as I let the words form and coalesce into sentences.

I don’t want to hear that I’m expressive.

I want to learn that it’s okay to never be able coordinate my movements when I turn toward a door frame, resulting in the inevitable collision. I want to learn that I can focus on my movements, unapologetically Autistic in the ways my hands move, slowing to let myself tap invisible pianos and move my hands back and forth to the music.

I want people to learn to value diversity in communication and movement. I want people to make the effort to understand me, as I make the effort to understand them.  I want people to learn that the ways I speak and move are, now and always, acceptable and valid.

I Fear for My Fellow Autistic People: On Media Misrepresentation

Recently, a piece appeared in a major news outlet. The main premise of the article described a mother’s fear that her autistic teenage son will kill her, her other son’s wish that his brother would die, and the lack of respite services where she lives. It was a very personal piece. This article more than irks me; it plays into very dangerous stereotypes. It plays into the idea that autistic people are inherently dangerous, that we are burdens. And dangerous stereotypes in the media, whether in fiction or opinion pieces or livetweeting an autistic person’s meltdowns have real life consequences.  

First, let’s talk about autism and violence.

Autistic people have many dangerous stereotypes about violence, particularly mass shootings (the idea that we are likely to be perpetrators) surrounding us; the mass shooting one is false. However, when individually aggressive, we usually have an outside stressor. When I was in school before college, it was people touching me; the overwhelming sensory overload; the frustration of not being able to put words to all my feelings; and the constant wear and tear of terrifying social interactions and bullying. I was flailing hands, panic attacks and tears, bolting down the hall, and slapping anyone who touched me. Fortunately for me, I was not considered intimidating and dangerous for a variety of reasons, just in need of more support. 

But continual aggression is usually a sign that something is very stressful. This is a checklist that can help identify those sources. Tumblr user Lysikan, a non-speaking autistic person, has created a set of posts that can help reduce meltdowns – one of the primary times an autistic person can become aggressive while overloaded and panicked.

Next, let’s talk about her other son’s hatred and death wish for his brother, and media narratives surrounding autism, disability, and our murders.

And also what I fear almost more than anything, the murder of another autistic or disabled person by their caregivers or family members. Let’s talk about filicide. Let’s talk about how the same story occurs over and over again. A disabled person is murdered by a caregiver or family member. The media picks up the story. Sometimes they report on it as a mercy killing. They almost always talk about the burden of caring for a disabled person. The victim is a throwaway in their own story. Many people have already explained this in countless blog posts. It should be beating a dead horse, but it’s really not. Many people act on their wishes. I have heard of far less, if any, killings of caregivers by autistic people than killings of autistic people by caregivers. This is why I fear the death of autistic people at the hands of caregivers and family members far, far more.  

Finally, let’s talk about responsible journalism, disabled people’s right to privacy – and real life consequences.

I will absolutely agree that there is a need for more respite services. I will absolutely agree that more services need to happen! But there are frankly better ways to deal with this than publicly posting in a major news outlet the intimate details of an autistic person’s personal life. There are better ways to deal with this than to promote dangerous stigma. There are private actions that could be taken that would protect the autistic person’s confidentiality and not promote stigma.

One is to actively work to reduce the autistic person’s meltdowns using the strategies linked above. Another, if this resource is accessible, is to see a professional about your feelings of stress or anxiety. And – these kinds of stories are not isolated. They are patterns; “autism parents” routinely post in and on public spaces and blogs intimate details of their child’s life and how miserable their child makes them.

This is extremely dangerous for autistic people.  First, it effectively outs them to the world, and could make it impossible for them to do things without people realizing it and judging. Second, it directly leads to real life consequences. Elizabeth Bartmess notes in “Autistic Representation and Real Life Consequences” that

This is shown in several similar ways in fiction and in real life. Autistic people are represented as burdens on others, particularly their families, when they embarrass neurotypical siblings or have greater support needs. This is more common for characters written to “low-functioning” stereotypes…. In real life, we are presented as burdens as well… This has consequences. At the extreme end, media or other parents justify parents murdering autistic children. Abuse is common, by friends, people on the street, caregivers, and others such as paid service providers, foster care providers, and transportation providers. In general, people with developmental disabilities have drastically higher rates of abuse; abusers may target autistic individuals…

The Pacific Alliance on Disability Self Advocacy (PADSA) resource guide on media misrepresentation states, “Even when people don’t directly cite these stories, they seep into culture. People form their opinions and take their actions based on prejudices.”

Both the autistic teenager’s mother and this major news outlet had a responsibility to autistic people to report in a way that does not increase stigma and cause more consequences for autistic people. They chose the stigmatizing, stereotyped, and dangerous way of talking about autism. I am afraid of these stories and will continue to speak out against them. I am not afraid for myself, but for all my autistic brethren living in dangerous situations. I think of all the people that may make harmful or fatal choices because of this irresponsible news story and fear for all my autistic and disabled brethren.

Additional Resources

On Disabled People’s Right to Privacy (Especially Those With Caregivers) and Media Misrepresentations

On Responsible Reporting and How to Respond to Media Narratives of Disabled People

For Parents on Autism Acceptance, Meltdowns, and Aggression

On Filicide

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