Showing posts with label autistic activism. Show all posts
Showing posts with label autistic activism. Show all posts

Tuesday, May 24, 2016

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.


Sunday, November 22, 2015

This Is What They Think: Protesting Autism Speaks

The ASAN-Atlanta chapter recently protested an Autism Speaks GA 5K Run.

“Would you like to hear what autistics have to say about Autism Speaks?”

They kept walking. They said no. They flipped us off. They told us to go home. One person told us they knew everything about autism already because they had autistic children and had “full acceptance for them.” If one is running or walking for an autism cure, it means you only have acceptance of what you want your children to be. You're accepting of a vision, not the people right in front of you.

This was with the exception of about twenty folks. They took flyers, which I really hope they kept.

An Autism Speaks staff member approached us and started condescending to us about how much Autism Speaks *actually* helps autistic people. The person condescended and acted like we did not have a complete story about Autism Speaks. The person also completely forgot Autistic adults existed in their spiel. “It's so great that you're out here, Autistic voices are integral to the conversation about autism!” Sappy and dripping with fake admiration, forgetting advocacy is not cute. Autism Speaks also really is not that interested in autistic voices. They have no autistic leadership anywhere. Their only autistic member of prominence, John Elder Robison, resigned in 2013.

Finally: “I'll keep on loving,” the person declared, as if we did not also want the best for their children. As if we did not love anyone or anything.

At least it showed that we made somewhat of an impact. They wanted to placate us, lower our guard, not come back next year.

***

The children broke my heart the most. One person's child tried to look at our signs. The parent physically turned them away.

This is what many of them seem to think. Autistics cannot think for themselves. Autistics cannot possibly disagree. They do not seem to want their children to grow up with the hope for anything other than a cure and being “indistinguishable from peers.”

To look at our signs and have them realize there are autistic adults who share a neurotype and who are protesting the event that their parents are at would be heresy. To start accepting themselves would be treachery and, to many, the appearance of giving up (it's really not). Many of these parents think that a cure is what society needs to do to help autistic people. They appeared bewildered and angered at our presence.


I really think most of these people do want the best. But they've been told over and over again, by society and since 2005 by Autism Speaks: Cure autism. At the least, make them indistinguishable from peers. It's a disease. A burden.

I flapped at their children. It was the only way to say, “I am like you and you are okay as you are.”

***

Other Sources on Autism Speaks


Wednesday, October 22, 2014

The Problem Isn't "Infighting"

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

–

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

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

You take into account the people who disagree with you.

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

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

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

Monday, October 13, 2014

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.