an exploration of autistic mad pride: part one

Introduction:

exploring the possibilities of neurodiversity, mental health, and autistic mad pride intersections

Recently, I found an article on Medium talking about schizophrenia fitting into neurodiversity, which got me thinking about how mental health more broadly fits into neurodiversity.

There are a lot of people I know with mental health disabilities/[a person’s preferred terminology] who dislike the idea of categorizing mental health things as neurodivergence, who feel that claiming mental health stuff as neurodivergence by definition means claiming it as an intrinsic part of the self that can’t be separated from oneself- and thus can’t be recovered from.

Currently I’ve been trying to think about and sort out the various models of mental health. For instance, the recovery model as it was conceptualized and formed after the period of large-scale, long-term institutionalization talked in part about recovering from the effects of society.

Then a lot of what “recovery” means, as I’ve seen it discussed, not just recovering from society’s effects, but primarily recovering from the effects of the mental health disability. I do know people with mental health disabilities who support this idea of recovery insofar that it means that they experience a significant reduction of symptoms along with developing coping strategies for symptoms.

However, as a disclaimer, I am not in fact trying to tell people that they cannot want to recover – experience a significant reduction in symptoms etc. – from their mental health disabilities.

But I think the recovery narrative, if pushed onto us by others, is, if not harmful, not exactly beneficial, because then it is not a choice. And a lot of times that’s the only narrative people are given.

And then a lot of autistics have co-occurring mental health disabilities, as I’ve discussed in this AACC presentation (PDF) and in this blog post series (the transcript for the AACC presentation is here as a PDF). And the autistic rights movement is rooted in neurodiversity and neurodivergence as identity. 

Then the questions I have are, that I will address in blog posts to come:

  • Part Two: Should mental health disabilities be fit under the category of neurodivergence as identity? (I can’t answer this for everyone, but I can answer it for myself and the way I see it).  
  • Part Three: Why haven’t the mad pride, mental health rights, and autistic rights movements intersected nearly as much (to my knowledge)?

 

Advertisements

We need to name some modern practices as eugenics – and don’t

How this failure to name eugenics – and then condemn it as such – has resulted in a growing acceptance of renewed efforts to “better humankind”

An article on Germany’s renewed efforts to document Nazi-era medical experimentation and murders of disabled people came out recently without ever mentioning the word eugenics. Published on January 5, 2017, the American Association for the Advancement of Science’s Science Mag titled the piece “Germany to probe Nazi-era medical science.” The phrase “medical science” is too kind for murders rooted in a eugenics movement – and eugenics is not “medical science.”

I am pleased that Germany is doing a probe and that this is getting coverage in a science magazine with such detail, as eugenicists claimed scientific and medical evidence as their rationale. I am less so that they didn’t name eugenics. The article’s word choice got me thinking about eugenics in the past and modern eugenics. If you don’t name eugenics as such, it’s that much harder to recognize today.

Many people I know agree eugenics was a movement that happened in history, and name it in articles and other writing. But I have not seen as many people discussing eugenics practices happening in recent years and today. As a society – with some exceptions – we don’t call many actions eugenics or discuss the perils of eugenics practices occurring in them.

  • We don’t call it eugenics when prenatal testing in order to avoid having disabled children – particularly those with Down Syndrome – happens.
  • We don’t call it eugenics when disabled people receive the recommendation that they should not have a child because they have a disability.
  • We fail to discuss eugenics beliefs behind the removal of children from disabled parents on the basis that they are “unfit to parent” due to disability.
  • We don’t call it eugenics when many states still have sterilization laws on the books and when Buck v. Bell has never been overturned in its entirety.
  • We don’t call it eugenics when disabled people are still sterilized “for their own protection” in many countries, such as Australia. 
  • We don’t call it eugenics when discussions of “designer babies” that are “perfect” – meaning, to many, without any form of disability – occur.
  • We fail to discuss eugenics when talking about human genomics and gene-editing programs, such as CRISPR.

Yet these are rooted in eugenics, with the belief that disability is unacceptable and bad.

Joan Hume, a woman with a disability, wrote in 1995 about the “new eugenics,” prenatal testing, and having disabled children, “The message about disability is loud and clear: the prospect of having a disabled child is not acceptable for many prospective parents…. With the emphasis on “perfect babies” the message of the new technologies is that disabilities can and must be weeded out by eliminating foetuses with certain defective traits. This is clearly a modern version of the earlier eugenics perception that disability is inherently bad.”

And eugenics is, indeed, inextricably linked with the concept that disability is bad – regardless of whether the practices target non-disabled people or not. Eugenics tells people that disability and failure to conform to mainstream society’s expectations and rules are bad. Eugenics is ultimately rooted in  intertwining sets of bigotry: racism, sexism, classism, ableism, and more forms of oppression, using disability, “abnormality,” and “defects” to explain practices such as involuntary sterilization of any marginalized person.

The popular American eugenics movement of the Progressive Era past had eugenicists positing that intelligence and moral “defects” in the “feebleminded” people were passed down like Mendel’s peas generation by generation, using the growing field of genetics, the myth of the “feebleminded menace,”  and “fitter families” contests to make it plausible and acceptable to society. They twisted scientific concepts and used new scientific discoveries and theories of science to make it sound exciting to Progressive-era society – and they also capitalized on public fear and worry about poverty, race, immigration, and disability.

In many ways, it had legitimacy among many – eugenicists testified before Congress on immigration restrictions as “experts” in the years before and during World War II, many states had sterilization laws, and the Supreme Court affirmed a Virginia eugenics sterilization law 8-1 in 1927. In several ways, it did not. Some eugenicists’ careers in eugenics ended early due to the growing negative response from the public. Some prominent scientists decried eugenics as pseudoscience. And eugenicists in that era failed to see their ideas of sterilizing every “feebleminded” person fully implemented on a massive, national scale. 

Unlike the eugenics of the past, eugenics today – from what I’ve seen – is generally cloaked in scientific legitimacy, using real science like CRISPR and gene editing and genomics. Like the eugenics of the past, a lot of people still have fear and other negative, oppressive beliefs regarding poverty, race, immigration, disability, and more. Like the eugenics of the past, is is presented as exciting new scientific discoveries.  And that makes it just as terrifying, if not more.

(ETA: a good resource to follow is Genetics and Society, “a nonprofit information and public affairs organization working to encourage responsible uses and effective societal governance of human genetic and reproductive technologies and other emerging technologies.”)

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.

Carrie Fisher (Princess Leia) Wrote Books and Had a Service Dog

carrie-fisher

[Image description: Three images related to Carrie Fisher. From left to right, Carrie Fisher wearing glasses and kneeling next to her service dog, the French Bulldog Gary, at a red carpet event; Carrie Fisher dressed in white as Princess Leia with her iconic hair buns, surrounded by Stormtroopers; and Carrie Fisher’s book Wishful Drinking, which has her name, the title, and an image of Carrie Fisher with hair buns facedown on a table with a martini glass in her hand.]

In high school, it was mentioned to me in passing by someone that Carrie Fisher, whom I knew as Princess Leia, had bipolar disorder.

I shrugged, and said, “Oh, okay.” She was still Princess Leia.

Sure, depressive episodes and generalized anxiety made up a majority of my days, a damp humid cloak like the Georgia summers I liked to wander down the streets in – alone. An autistic, depressed, anxious wreck, isolated and considered socially unacceptable. But Carrie Fisher was just Princess Leia, right?

I never thought she meant much to me besides her role in Star Wars until a short while ago. In college, I became invested in disability rights and later, after my first and second hospitalizations in a psych ward, mental health rights as well. Each discharge from the hospital read that I had major depressive disorder, not bipolar disorder. Each hospital had only seen me for suicidality. They didn’t see the times I felt higher than the hills I once wanted to die on, and faster than the too-fast DC Metro trains. I find the Metro a relatable metaphor. I too sometimes go too fast, experience frequent malfunctions, and occasionally derail.

But I find her more than a relatable metaphor. Carrie Fisher was a bipolar person who dealt with substance abuse issues. She was often considered socially unacceptable. She openly spoke about her mental health disability, and substance abuse issues (which were in part an attempt to keep her manic episodes in check). She was open about her dog Gary’s role as a service animal and took him to public events. And she was also the actress who played Princess Leia, a mother, an author, and a script doctor who edited scripts.

She was Princess Leia, and she was also an outspoken mental health advocate.

I owe her a lot.

For talking about about everything in the open. For being Princess Leia but also someone who employed a great number of coping strategies for her mental health, and talked about them. For sometimes being considered socially unacceptable.

For showing me that she, Carrie Fisher – Princess Leia – was as outspoken in real life as she was on screen. For showing me that it’s possible to be vocal about personal struggles and what you don’t like – and what is good – about your brain and yourself.

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.

the facts I have, and what I still don’t know: notes on autistic trans selfhood

I am 1 hour late to Transgender Day of Remembrance, if we are going by Eastern Time.

. . .

I wanted to write something political. I wanted to write something that would move people. I wanted to write something that said all the right things. I wanted to write something that would bring hope, even if just a little, in a time when we need it the most. I wanted to write something about the times we’re in when trans people are considering – or are – de-transitioning. I wanted to write about how we should not be passing around suicide hotlines after an election and how Trans Lifeline is overloaded with calls.

I wanted to write about the people I have never met and maybe never will, because they are dead (in which case definitely never will), or because I don’t know how to un-silo my identities sometimes, or convince people to take my disabled identity along with me because you cannot separate me from my disability and I cannot stop being disabled just because I enter your spaces and everything is overwhelmingly bright and loud but I cannot figure how to ask everyone to tone it down some because I am afraid of accidentally trying to silence you.

(I only went to my first pride in 2015 because I was terrified of the noise, and wore my noise-cancelling headphones with music playing and carried a sign that said “Autistic and LGBTQ+ Pride” and flapped a lot to self-regulate and tried to avoid the crowds and tried to stick with the person I was with and still had to leave before too long).

. . .

I wanted to write about how much it hurts to know that all your communities have a suicide problem and all your communities have members get murdered and you feel like you have to mourn both separately even though the following facts are true:

The autistic community has a higher than average chance of being trans, non-binary, or gender non-conforming and autistic adults without intellectual disabilities are nine times more likely to die by suicide than their non-autistic peers. There is a dedicated site to those we have lost to filicide. The trans community reports a 41% suicide attempt rate, as opposed to 4.6% of the general population, and 2016 breaks the record for most trans people murdered in a year.

What happens when you’re trans and autistic?

I mourn the deaths.

. . .

I do not know the answers to how I will act to be not just an autistic activist with mental health disabilities, but also a trans activist who fights more deaths in the trans community. I want to be an activist who is aware of the intersections that trans people have – trans people of color, autistic trans people, otherwise disabled trans people, and so many other intersections – and tries to work in the space I have and not overtake others’ voices.

But I am still working out my non-binary and trans identity. I am still trying to figure out how to create spaces that work for both autistic trans people like me and non-autistic trans people. I am still working on figuring out how to be a part of more than one community.

. . .

I wanted to write about something political. I wanted to write something that would move people. I wanted to write something that said all the right things. I wanted to write something that would bring hope, even just a little, in a time we need it the most.

I wrote what I could instead.

we are worth fighting for

I was complacent, really, in or just out of high school. Sure, I voted for President Obama in the ‘12 election. Voting Democrat doesn’t always make one aware of the situations facing people. 

I have been aware of hate for a long time, though, even if I didn’t always act against it via activism. I have felt betrayed for a long time by other people, people who hate, people who hate disabled and LGBTQ+ people like me. (In recent years, I have worked to be more intersectional and further the rights of people whose identities I don’t share, because we need that. It’s needed more than ever). 

***

The election – which I desperately wanted Trump to lose, which I desperately hoped Trump would lose, which I wasn’t sure he would lose, and which he didn’t lose – is bringing out a lot of fear in people. And of course there is fear.

A Babson College student drove his truck through Wellesley College, Clinton’s alma mater, and harassed students – namely, women of color – there. Swastikas are being painted and flown. The KKK is planning a victory rally in North Carolina. I have heard of Jews being assaulted, of Muslims being assaulted, of people of color being assaulted. Trump has promised to try and end sanctuary cities for undocumented people, increase immigration raids, and attempt immigration restrictions.

I will not say no one has nothing to fear. I will not say things are okay. Those statements would be lies. I fear for my friends. I fear for people who are not my friends, people I don’t know. I try to not think about myself, but I do wonder about my psych med prescriptions, my queerness and any ramifications from LGBTQ+ people being targeted, and I am suddenly wondering how long it will be before I might lose the ability to get insurance because of pre-existing conditions – and again, I wonder about the psych med prescriptions that help me stay stable.  

***

But here’s the thing… Trump wants us to hate each other. Trump wants all of us, the marginalized, to be terrified out of our wits and not trusting any of each other. Trump wants us to only trust certain silos of our activist movements and for people to pick a dominant identity and stay with that one – Trump wants us to ignore intersectionality. Trump wants us to burrow down, ignore each other.

There are people who are out there who are working to change things: people who are thinking about going into law and public policy, people who are deciding where to volunteer, people offering kindness. We can respond to everyday bigotry. We can fight on. We can fight on. We can organize to prevent damaging policies. We can be in solidarity against hate crimes. We can fight on. We can fight on. If you cannot organize or take action directly, do not be too harsh on yourself.

I will not say that times weren’t rough already for some of us, that our safety nets for people were perfect, that America pre-Trump was a haven for everybody. I will say: we have fought especially dark times before.

(As this article says, “existence is defiance.”

And we are worth fighting for).

***

Here are some other posts that have reactions to the election, and ways we can move forward, to be updated:

I Wanted to Believe (+ mental health resources)

I wanted to believe. I wanted to believe this country could do this. But we didn’t, so I want to say, now: Hold each other up, hold each other, we will do our damndest to make sure as many of us as possible make it. Please don’t kill yourselves. I know how painful it is to watch over half the country vote, in essence, for (at the least, an effort at) the total destruction of human rights here. I know what it’s like to want to die. I know what it’s like to be close to it. But please don’t. Hold each other up. Hold each other. Please try to survive. Find any reason you can. Remember that your existence is defiance.

Please stay alive.

***

Here are some resources, I originally created them for a support group I’m part of – they are mostly taken from my mental health resources page. Some of them are specific to certain identities, like gender or racial identities.

***

Other Blog Posts on Moving Forward

 

Stop Telling Disabled People We Can Do Anything by Force of Will

Trying to Do What I Simply Could Not

On Monday, October 10, I accidentally gave myself a concussion. It was not glamorous as people would have you believe; I concussed myself on a wall of all things. I collected myself, went to work, and then work convinced me to go to urgent care after a persistent headache for three hours.

That is what I remember of Monday. It’s a really great thing that they gave me super detailed discharge instructions, because I remember almost nothing of being seen at the urgent care place. I don’t really remember Tuesday, but I’m pretty sure I slept for most of it. On Wednesday I went to therapy and to a psychiatry appointment to get my ADHD and other psych meds. I don’t remember much of what was said during either of them. I do remember not being able to sleep more than six and a half hours in two days.

Since Wednesday, I have been trying to work. I did manage to do some things on Thursday, but not as much as I would have liked (and it took me five or six hours to do one task). Apart from that brief time on Thursday, I have not written anything longer than a paragraph and besides informal communication, or done anything requiring more than two steps (in this case, opening the Google Doc! And then translating my thoughts into words). I haven’t been able to update my Psych Ward Reviews page with categories and tags, edit a draft of an article for a multimedia outlet, or figure out how to microwave anything that requires you to microwave it in two steps.

This is not for lack of trying. I have sat in front of the computer for hours, opening Google Docs and work related items. But whenever I tried to focus, everything coherent disappeared and many different things bounced around my brain. My brain simply hasn’t been able to connect the dots. Executive dysfunction, which I already have a difficult time with, has been several times more intense.

14646682_1255876341137720_182056983_o

How to keep a heating pad on your head: Wrap a scarf around your entire self, basically. Begin image description: Kit, a white nonbinary person with tortoiseshell glasses, propped on a colorful blanket. Kit’s hair is mostly covered by a scarf to hold a heating pad in place. End image description.

Stop Telling Us We Can Do Anything

So, this is in fact a disability post (the discussion of temporary disability as a thing is complicated, so I’m not going to go into that. But some people do end up disabled from post-concussion effects that can last for a really long time). But my main point is that force of will isn’t enough to “overcome” sometimes. Multiple disabled people have talked about how “you can put anything you set your mind to!” is damaging for disabled people.

As Real Social Skills notes in the blog post “You can do more when you remember that you’re disabled,” when people assume others have the same cognitive and physical abilities, “This often leads to the assumption that people who aren’t doing a task either haven’t been told what to do, or aren’t sufficiently motivated to do it.” I internalized this – I kept sitting there for hours, berating myself for not being able to do things I usually could. When I ran out of ADHD meds once, I did the same thing.

A fellow disabled person, Ruti Regan, recently introduced me to the book “Can I Play Too?” It’s a children’s book, but it really illustrates one of my points – in this case, the snake wants to play catch with an elephant and a pig. The elephant and the pig aren’t sure how to include the snake. The snake has no arms or legs to play catch the traditional way, and (ironically to me at the moment) ends up with the ball bouncing off its head painfully several times before wanting to give up. But then the trio comes up with an idea to use the snake as the “ball” to toss back and forth, and everyone gets to participate.

It’s important to remember that disabled people have different physical and cognitive ways of being, and that we shouldn’t have to “overcome” our disability to be meaningfully included – and no, we can’t “overcome” things just by “putting our minds to it.”

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?