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.’


 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’.


…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.

Using People with Mental Illness as Clickbait Hurts Us

Bad articles on the problems we face can hurt and kill people. Write better.

Dear everyone, including myself: We deserve to be alive. We have the right to self-directed services and whatever works best for us. We deserve to be alive. Stay alive. Stay alive.

I have been on medication for a long time, first for ADHD, then anxiety, then depression. I have intermittently had periods of wanting to die since age 14. My most recent full-blown crisis landed me in the hospital. It was not a question for my friends whether they still wanted me alive, even as I lay bare every problem and feeling I was having. They wanted me alive.

Dear everyone, including myself: We deserve to be alive. We have the right to self-directed services and whatever works best for us. We deserve to be alive. Stay alive. Stay alive.

Evidence suggests that there is an increase in suicides following media reports of suicide, which is frequently referred to as copycat behaviour or as the Werther effect… The risk is thought to depend not only on reader characteristics,2,3 but also on media content. 35 

While the author of a certain xoJane article did not report the person’s death as a suicide, she left open the implication with a “supposedly” and the method of “supposed” death. She wrote an article that openly told us what we should do and tried to tell us how much she thought our lives were worth. It was a grim reminder of some people’s mindsets, but we do not have to bow to her desires.

With that knowledge, writers, know you are writing about people who deserved to be alive, and your audience are people who deserve to be alive, and your audience includes people who may already be prone to suicidal ideation. You are responsible for encouraging us to die if you write a sensationalized drama with explicit details. That is not a thing to take lightly or relish. It is a thing to make you hold yourselves accountable in your writing.

Dear everyone, including myself: We deserve to be alive. We have the right to self-directed services and whatever works best for us. We deserve to be alive. Stay alive. Stay alive.

What do we do instead? What do I do instead? My friend wrote on how to talk about suicide, and about taking care of ourselves and each other in advocacy-based communities, which see a lot of burnout and stress. We should demand that people write more responsibly, as per what my friend gathered information on. We should take care of each other when they don’t. I will try to stop writing so much about things when I’m off work. We should set healthy boundaries for each other but still show support.  

And writers should stop writing sensationalized dramas about mental illness, regardless of whether it’s about suicide. Writers of all kinds, this applies to you. These are our stories and our lives, and we want them respected by all, not showcased as some kind warning story, some kind of pity-narrative, some kind of revenge-story, some kind of sensationalized odd horror feature story. You can hurt people. Take some accountability. 

Dear everyone, including myself: We deserve to be alive. We have the right to self-directed services and whatever works best for us. We deserve to be alive. Stay alive. Stay alive.

People with Mental Illness Deserve to be Alive

XoJane recently published an article about someone with schizoaffective disorder’s death being a blessing. Outrage ensued. The author’s name became anonymous. The editors of xoJane, at least temporarily, locked their Twitter profiles, then released this apology:

Screencap of: “I apologize for an article that was posted here yesterday, entitled “My Former Friend’s Death Was a Blessing.” I deeply regret the hurt that this article has caused and understand that it has perpetuated stigma and diminished the lives of people with mental illness. I am committed to immediately reviewing our vetting process to ensure that this experience has a positive influence on the ways in which we at xoJane present all women going forward. I appreciate all of you who took the time to let us know how you felt about this issue.”

I will not link to the archived version of the article right now. I would like to focus on what happens when you write about these topics like that. When you write that it’s better that people with mental health needs — especially people with particularly shunned diagnoses — die, this is what I know about you: I do not trust you with anyone. And I do not trust anyone who would post such a thing. I do not know the motivation of an editor allowing it to be posted. There are a multitude of reasons people have suggested, most of them related to increasing page hits and profit. A lot of people already think our lives have no value. They will continue to visit the page. Or, people outside the disability rights/mental health communities will not hear about it.

What happens when you write this way is a lot. It first of all tells people with mental illness — and again especially those with more shunned diagnoses — that people think we’re better off dead. It confirms some of our worst fears, our darkest, deepest worries. I do not think there is any data on this, but I suspect this way of writing about us encourages people to kill themselves.

It also presumes to know what the person with mental illness would have wanted. It presumes that we always think of ourselves as shells, better off dead, and that our suffering will always outweigh our right and desire to live. And indeed, some of us do feel that we are suffering a lot, and/or have suicidal ideation. I spent time in a hospital this January to prevent a suicide attempt! But writing that you know they’d be happy with the way they died and that being dead is better for them perpetuates in a very active way negative self-value and more fear and more, “Well, no one will miss me if I die.”

Then, it reinforces the narrative to other people, casual readers, that we are miserable, soulless unpeople. That with how uncomfortable we make people, we ought to be dead. Like I’ve mentioned in other pieces, we are at best inconvenient and uncomfortable to people. People are allowed to be uncomfortable with actions and statements, and assert boundaries — I have said awkward things to people in episodes of my cyclical mental illness and done my share of sometimes screwing up — but to capitalize off it and further the idea that we’re inherently bad and wrong and unpeople is unethical.

Saturday, May 21, 2016

Dear Autistic kids: a letter about friendship

I need to talk to you about something a lot of people don't talk about: friendship.

Some people assume that we won't ever have friends. Or, that we will know the “rules” for friendship if we have friends. The first assumption is wrong. The second assumption is sometimes wrong. I know no one explained the “rules” for friendship to me.

People will like you. People will care about you. Sometimes, these people will leave. I have been learning this the hard way. No one told me the “rules.” No one told me that friendships don't often last forever. I am sometimes in a great deal of hurt. This is especially after leaving college. Friends headed off to different parts of the country or even the world. I also moved to a different city for a job.

Sometimes, people move on. This includes these days, when people might have to move more and more for jobs. You might move and find it hard to keep in touch. People might also move for college, or just for other reasons. It doesn't mean they never liked you. Sometimes you will feel used. But that is how a lot of friendships will work, and it doesn't mean they didn't enjoy being friends. A lot of times, both people understand that many friendships are not a forever thing. But people might not have told you that. This is not your fault. It does not make you bad.

Sometimes you might feel close to a person, but they don't feel as close to you. It doesn't mean they don't like you. It will hurt. Figuring that stuff out is hard. It might change how you hang out with them, if you figure it out. It might change as you try to learn what things makes them uncomfortable because they aren't as close.

For example, I would devote myself to people who weren't as close to me. I would always remember their birthdays and sometimes bring them things. I would feel hurt when they didn't remember my birthday, though I didn't expect gifts. But they never expected me to remember theirs in the first place. And it often made them uncomfortable when I gave them things. 

Sometimes, friendships can last a long time. They aren't always short-term. It can be hard to tell which ones will, and which ones won't. Try to see how much work they want to put in to keep the friendship going after it gets harder to be friends for whatever reason, including distance. If they don't want to put in a lot of work, then it might have been a short term one. This is a generalization. It doesn't apply to all situations.

Friends won't always just drift away. Sometimes friends will hurt you and you leave. Or you just don't get along after a while. Or you make a mistake and hurt them. That will happen. We are all people. It doesn't make you evil. It will hurt when these things happen. Having friends is still worth it.

I didn't have a close friend from the time I was 12 to 18 and a half. I had a loose, vague collection of friendly people, but that was all. Fellow students looked at me a lot like I needed to get off the planet. But at some point, people will like you, and people will care. It might take a while, like it did for me. People will like you and people will care. A lot of times they'll leave and occasionally they won't. It will hurt sometimes.

Having friends is still worth it.


Monday, May 2, 2016

How #MHM2016 Misses the Mark

 There seems to be an assumption behind many mental health campaigns, like the #MHM2016 one – for Mental Health Month – that mental health care is all people with mental illness need. There is an unwavering focus on access to care. Okay. That's great for people who want mental health care. I mean, I see a psychiatrist and a therapist. I take medication. Cool. In some ways I am a model citizen with mental illness. But when people talk about access to “treatment,” and people “needing treatment,” and “the plight of the mentally ill” and “mental health awareness,” this is what people mean, I think:
  1. Access to to treatment is more important than issues like stable housing, co-occurring physical health conditions that can be managed so we don't die at our average age of fifty-two, and a source of income.
  2. People need access and should have treatment whether they want it or not, because they need it for their own good.
  3. Access to treatment will fix all the problems and manage the mental health needs well.
  4. People with mental illness belong in the hands of psychiatrists and doctors.
  5. Coercive/involuntary treatment and/or hospitalization.
  6. Awareness!!! The tragedy of mental illness!!!
My reactions to these:
  1. Stable housing, is, you know, kind of necessary to begin thinking about treatment. Instead of being homeless, or bouncing from place to place, and worrying about all the things that come with that.
  2. Stop. The baseline for any treatment should be self-directed.
  3. See number one. We need community supports, adequate physical health care, stable housing.
  4. How medical model of you. We can be fixed just by doctors, clearly! Tell that to my brain after a psych ward visit, and years of psychiatry and therapy.
  5. See number two.
  6. We are not broken - at least, not that you can decide. We are not tragedies. Many of us would take magic cures. Many of us wouldn't. More than that, mental health awareness campaigns are aimed at getting us into treatment where we “belong.” We become whatever our diagnosis is, to be fixed. Alternately, we are prone to being mass shooters in the public eye. When your campaigns focus on treatment, it makes us seem broken and people are likely to believe we need treatment before ending up mass shooters.

Sunday, May 1, 2016

Catch-22 of Mental Health Advocacy

There is a catch-22 I run into doing mental health advocacy as myself, similar to the one I run into doing autistic advocacy. It is a catch-22 similar to how people will tell autistic self-advocates: you're not autistic enough, you're too “high functioning,” you don't understand my [child, relative]'s struggles.

In a similar vein: I'm told I don't seem “mentally ill enough.” People have told me, “Well, I don't think of you as mentally ill.” Is it because the cyclical manifestations began later? Is it because they'd be embarrassed to know me otherwise? Or: I have a job. I look, day to day, slightly presentable – on occasion, even fully presentable. I am not homeless. I have never been homeless. I have never been involuntarily hospitalized.

So, people will tell me I'm not mentally ill enough... and then the people who have had all those things happen, been homeless and involuntarily hospitalized and jobless... will be told they don't know what's best for them. Will be told, because of the mindset that people with serious mental illness have no capacity, they have no right to self-directed services and treatment.

That the best place for them is the hospital and in treatment and being told what their treatment is. That HR 2646, “The Helping Families in Mental Health Crisis Act,” will do everyone good, especially for the desperate families watching their loved ones' mental illness. It won't. That the Treatment Advocacy Center, advocating for more hospital beds instead of jail when neither more hospitalization or jails are the solution for people with people with mental illness, and NAMI, a parent-based advocacy org that supports HR 2646, are helping everyone with mental illness. They are some of the most prominent voices in mental health discussions, and they do not center us in their advocacy.

Instead of playing into it and trying to describe how seriously my mental illnesses impact me, talking about what the medication has done to me, talking about symptoms and things I've done, talking about my hospitalization more in this – trying to justify over and over again why I deserve to talk about it – I will keep talking about mental health care being broken and people's right to self-directed services, no matter how incapable society thinks they are.