Burn Brighter, Faster, Do More, and Don’t Stop: On Activist Culture

What drives me to go to work (an advocacy job), go home, and write blog post after blog post about the work I do, share more news of oppression, and sometimes try to stay up later than I should and over-caffeinate, and not set aside time for myself? If you guessed, “Activist culture,” either from experience or the title of this blog post, you are correct. Recently I came to the startling conclusion that taking time off was, in fact, necessary to prevent me from going into total burnout at some point. An article in the Journal of Human Rights Practice notes “Social justice and human rights (SJHR) activists, whose work renders them susceptible to emotional and physical exhaustion (Maslach and Gomes 2006), need tools to tend to their own well-being.”

Working so hard that someone makes themselves physically and emotionally exhausted does not make them more virtuous, it makes them physically and emotionally exhausted. As I requested PTO from work, during which I plan to not write any advocacy-related blog posts, but maybe work on my magical realism novel, and visit a friend in another city, I felt incredibly guilty. But I need it to prevent activist burnout. The same article notes, “The combination of the emotional toll of SJHR work and the culture of selflessness can hasten ‘activist burnout’, a condition, described in more detail later, which often results in people scaling back on or fully disengaging from their SJHR activism.” This is a polite, academic phrasing of “imploding” for the most part. Many activists do not end their advocacy and activist careers well.

Further, not only can trauma travel down generations, it is still occurring to marginalized people. Discrimination can also impact mental health, and activists have a higher rate of mental illness (I recommend two posts in particular; Larkin Taylor-Parker of Traveling Show wrote a two-part series on Talking About Suicide and Healthier Advocates in which all of this is discussed, along with links and methods for self-care).

Activist culture perpetuates the late nights, and the lack of self-care; it calls upon the idea that the only ones worthy of virtue are those who sacrifice everything. The causes of activist burnout, according to 22 interviewed activists in the article, were: Infighting and tense relationships within activist communities, deep sensitivities to injustice, and lack of attention to burnout and self-care in activist communities.

For example:

Eight of the participants cited disharmonious or hostile environments in their SJHR activist organizations or movements as a primary cause of their activist burnout. They felt that the politics within their activist communities were often cruel and deleterious to themselves and other activists.... Several participants shared how they had been ‘bullied’, ‘attacked’, and ‘undermined’ by fellow activists.’

Further:

 One factor that distinguishes SJHR activist burnout from other forms of vocational burnout is the stress and self-inflicted pressure that comes with a deep awareness of injustice and exploitation (Kovan and Dirkx 2003). Eleven of the participants noted how their sensitivities to injustice, and the related stress and pressure, contributed to their burnout, especially as the injustices they were battling appeared too ‘unwieldy’.

Finally:

…all of the activists interviewed for this study experienced some level of activist burnout that required them to leave their activism at least temporarily. Other than one participant, none found in their activist organizations or movements mentoring on coping with burnout or opportunities to have open, honest conversations about burnout. Many of the activists attributed their burnout to the absence of these opportunities.

I have not seen a functional discussion about activist burnout in the disability and autistic communities save for private discussions, Taylor-Parker’s posts, and a slightly irritated post I made in 2015 that got backlash for things it never said. Perhaps there are discussions that I'm not seeing. Or they're just not happening.

Again: someone working themselves to emotional and physical exhaustion is a thing that should be discouraged, not praised. We need to stop encouraging people to sacrifice themselves to movements and burn out quickly. We need advocates that can sustain this long-term without burning out and keep movements going, and grow to become community leaders and elders.

Defining Ableism

Defining Ableism

Note: This is U.S.-centric

***

Sometimes it feels hard to define ableism when it is all around us and everywhere and so much more than language. Language contributes to, and perpetuates, ableism. Ableist acts can include language.

But I keep thinking of the time in Fall 2013 when I started having seizures from a medication interaction. The seizures were atypical. No one knew what they were, least of all me, too out of it to tell that something was actually terribly wrong.

What I most vividly recall is not even the night I had my worst episode, but the day after, when my friend and I talked about it and she'd been terrified to call 911 because of the way I was presenting. Because I was slurring incoherently like I was having some sort of non-neurological or physically based episode, and she knew what happens to people in the psychiatric systems if they go wrong. She knew the way I was presenting would land me in the psych ward.

More drastically, I think of the man who ended up in the mental health system during a crisis, and the state of Maine put his cat down and sold his home.

When we have to be so afraid of our psychiatric system...? That's the result of ableism.

Sometimes I think about all the dead and murdered people too, like Dustin Hicks, a recent one close to home. My chapter just had to write a statement on it. The news outlets declined to even reply to my encouragement to publish all or part of the statement. One news report discussed his mother and reasons why she might want to kill him. None mentioned that he deserved to live, or that his death was a tragedy. We know almost nothing about him.

When we have to issue statements over and over again urging people to report responsibly and call our deaths, not our lives, tragedies? That's the result of ableism.

I think of all the various intersections we have between other identities, too. We are not a monolith. I think of the many, many people of color with disabilities who face racism and ableism, sometimes with deadly or injurious consequences. I think of the #FreeNeli campaign, and how long it took many of us white folks to start tweeting on it after the initial call for tweets. I think of Neli himself, unjustly incarcerated for being black and autistic, in isolation. The governor finally did issue a conditional pardon.

I think of Kayleb Moon-Robinson, one of the many students of color and students with disabilities disproportionately referred to law enforcement. An eleven-year-old charged with a felony. The school to prison pipeline is real...

I think of those of us who hold many identify facets, like being LGBTQ+, a person of color, a religious minority, as well as being disabled.

When we have those intersections meet in a dangerous way, amplified by multiple marginalized identities, the ableism and other -isms and -phobias become intertwined, and not the result of purely ableism. These intersections matter.

I think of how someone got kicked out of their house by their roommates for being autistic.

I think about the story they ran on Minnesota and its group homes, the people trapped in the facilities.

I think of history, too. I think of the sordid history of locking people with psychiatric disabilities, intellectual disabilities, and developmental disabilities in institutions...

I think of the nasty history of eugenics. (The .pdf is American and German history of eugenics only, as I lack a college library to find the other physical sources. Also, there's a typo at one point where I meant to say “Indiana passed the first sterilization law in 1907.”). How it affected so many with disabilities (and other intersections).

I think of how nowhere was physically accessible, how Ed Roberts couldn't go to school unless he lived in the infirmary.

I think of activists crawling up the Capitol steps to protest and demand the ADA's passage. Don't let the black and white photographs in the coverage of the Capitol Crawl let you think that this was long-gone history. We only just hit 25 years of the ADA.

I think of the long, long history ableism has. Ableism is not new.

***

Could I go on? Yes.

I fear being too depressing. I fear a lot of things. Mostly, I am sometimes frightened of the world.

We could stand to be gentler of people still learning the new words that change so much. Ableism is far more than a list of words and we need all the good hearts we can find. Clumsy language on the part of someone who is trying (and who may have communications-based disabilities!) is something to be less concerned about than the dead and wounded around us. Clumsy language on the part of someone who is trying should, perhaps, receive calling in, not calling out.

Ableism seems insurmountable, and there will never be a great sweeping moment where we crush it entirely. But I think we're making a dent. We've come 25 years since the ADA. Seattle has some crappy curbs that Disability Rights Washington is taking them to task for. Ableism still goes on and on. But we're making a dent. The largest non-profit in the nation dedicated to eradicating autism had its donations drop. Their president is resigning, though this may have been a planned move. We are producing documentaries of our pain and sorrow, of our challenges and stories, of our hopes and dreams.

We have people among us becoming lawyers and professionals and influencing that way. We have others in grassroots advocacy and policy advocacy. We have those whose advocacy is for themselves only, fighting to survive and be heard and respected (and that's okay). We want our brethren to survive. 

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.

We had to pick a topic for our Speech class

and we have to present a two minute thing on the topic we have chosen. Of course I picked this:

Topic

A History of Autistic Self-Advocacy to Now

• Context: Domination of Parent-Based Advocacy and its roots
• Roughly when did the self-advocacy movement begin after years of being dominated by parent-based advocacy?
• What struggles did they face?
• What struggles do we still face?
• When did the movement, along with the neurodiversity movement, “come of age?”
• How has it evolved into its modern form?
• The Modern Platforms

Reasons for selecting topic

I am an Autistic self-advocate and activist. I believe in promoting the acceptance of disability, abstaining from the attempted normalization “treatments” forced upon many of us, including us on decisions that involve us (and not just as token representation), presuming competence of disabled people, and supporting fellow disabled people.

Why it should matter to everyone

The rights of Autistics and of the disabled in general are harder to attain because of ingrained discrimination in society. People fail to include us in policy-making, advocacy, and in our own lives. Organizations like Autism Speaks would try to speak for us and try to force us into normalization or cure when the majority of us oppose such treatments and cure research. We are human; we have autonomy. As people, and as the marginalized, our rights are civil rights. As the old adage of the disability rights movement goes, Nothing About us Without Us!


My sources will include

• Books written by early researchers of autism, such as Bruno Bettelheim (to provide context for the birth of the parent-based advocacy movement).
• Loud Hands: Autistic People, Speaking edited by Julia Bascom: a recent anthology published in 2012 by Autistic people on their experiences, advocacy work, the discrimination against Autistic and other disabled people, and our history.
• Posts written by parent-based advocates and the website “charity” Autism Speaks who tend to oppose the idea of Autistic self-autonomy and try to force their children into normalization.
• Web archives from prominent first self-advocates such as Jim Sinclair (author of "Don't Mourn for Us" and "Why I do not like person-first language," and founder of Autism Network International) and Mel Baggs, especially in the 1990s
• Current posts from Autistic self-advocates around the web, including myself
• The Autistic Self Advocacy Network's webpage and their updates (ASAN is a self-advocacy based nonprofit based out of Washington, D.C., run by Autistics for Autistics)

• Notes I took during my Autism Campus Inclusion program in Washington D.C., sponsored by ASAN, which took fifteen Autistic college students to D.C. with various speakers and sessions to learn about history, advocacy, and action, including people such as the Executive Director for The National Council on Disability.
  

 ... is that enough