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.

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.

A study in the British Journal of Psychiatry stated 

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. 3–5 

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

Originally published on Medium

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.

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.

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. 

The Shaming of People With Mental Health Needs

A recovery-ish narrative is fine for people who want it. The story featuring Eric Walton and his mother is something more than that, though. Filed under “inspired news” in the Washington Post, it describes the blessing of his diagnosis and his new medication that finally worked, which came after his mother publicly shamed him in a blog post called “I Am Adam Lanza’s Mother.”

Yes, as he was age 13 and hospitalized for undiagnosed bipolar, she compared him to a serial killer, scared he would turn out like Adam Lanza, the shooter at Sandy Hook Elementary School. Why air this on the internet? To give a face to the pain, apparently, but why add more trouble and shame to someone who was dealing with a lot already? Too, it reinforced the notion that “mentally ill people are mass shooters!!!!”

It reminds me, of course, of the very public way many non-autistic parents of autistic children post videos of their children’s meltdowns and toileting needs to “share the experience of autism” (autism is a developmental disability, not a mental health need, but the parallels are striking)

Also, we know there needs to be more support for parents. Really, most people (except apparently the government or people who fund services, mostly) have grasped that. But needing more support does not equal getting to publicly share your children’s hygiene needs or meltdowns or outbursts or personal details. It is, in fact, possible to advocate with some level of dignity for your child. Really, most self-advocates for disability and mental health understand that parents need more support and also want the best outcomes for people’s children, albeit sometimes with major disagreements about how to proceed to gain these best outcomes.

There are many things wrong with the story.

There are many things wrong with portraying this public shaming as acceptable.



Too, the Internet recently turned its attention to Jake Lloyd, the former child star who played Anakin Skywalker in “The Phantom Menace,” part of the Star Wars franchise. Recently released from jail into a “psychiatric facility” because of schizophrenia – or, should I say, society’s preference to put people with mental health needs in coercive treatment in hospitals, away from sight.

The internet did so in a way that tore him apart and treated him like a spectacle, broken and mentally ill and in desperate need of a 24/7 psychiatric hospital. Naturally, they will treat him when he emerges not as a survivor of a coercive system but as a broken shell, stigmatizing him beyond what my words can express.

People should be able to talk about psychiatric hospitalization without shame and also to tell of the problems inherent to the system.



I almost walked into my therapist the other day outside the Metro. No, he’s not my therapist. He was my therapist. I burn with shame and want to run across the street to get away, but the light is red. He works in the psych ward.

On the same day, someone who climbed a sequoia tree and remained there for twenty-four hours during an episode of psychosis’s story appeared on someone’s Facebook newsfeed as a prop for HR 2646, the Helping Families in Mental Health Crisis Act. The man who climbed the tree is now in jail and faces $50,000 bail. His mother apparently wants to fight for the Murphy Bill because the legal system is blocking her efforts to get him psychiatric treatment.

Dear everyone: stop using people with mental illness as your props. The Murphy Bill would cut the funding to community-based programs that help people with mental illness find homes, legal programs that protect their rights, among other things. What the Murphy Bill does is force medication and treatment in psychiatric hospitals. It is a plan that does not fix the broken health care system. 

Of course, people with mental health needs in crisis mode are lucky if they not victims of police violence, especially people of color with mental health needs. This is also a major issue that should be spoken of more often and structural reforms pushed for.

But the public shaming of people with mental health needs also needs to stop. A coercive and dehumanizing psychiatric treatment system needs structural reforms as well, as I have written about extensively, before we push people into it. And lastly, if someone does enter that system, they should be free to talk about it without being shamed, without being treated like an unperson and like they are broken, to blog about the problems with the system and be listened to instead of being written off.

The people who need to be invited to the mental health conversation table are those thought to be the least able to communicate about it. We should treat people with mental health needs as people. Because people like me (perhaps not dealing with it as visibly), and people who are more visibly dealing with mental health needs, are people.

On Bernie Sanders' Mental Health Comment at the Democratic Debate

An ugly statement, contextualized by his reliance on blaming mental illness for mass shootings, sprang forth from Bernie Sanders’ mouth at the Democratic Debate on Sunday in Flint, MI – the same place where he also decided to use people with disabilities as props for the Flint water crisis. While he said the following ugly words, I was on stage at a queer open mic yelling into the microphone a poem what it’s like to be autistic and trans and disabled and watch community members die.

"We are, if [I'm] elected president, going to invest a lot of money into mental health," Sanders said. "And when you watch these Republican debates, you know why we need to invest in mental health."

Ow. It was meant as a casual joke. But this is the kind of rhetoric that routinely perpetuates itself into systemic oppression against people with mental illness like myself. It says, “people with mental illness are responsible for oppressive violence. People with mental illness are responsible for racism, xenophobia, classism, homophobia, transphobia, and ableism.” We can certainly be all of the above things because above all we are people, but mental illness alone is not responsible for these things. For Bernie Sanders, who professes to be anti-bigotry and progressive, it is a low blow to ascribe these things to mental illness. It’s a cop-out.

And above all we are people. I raised my voice into the microphone to conclude the poem,

and the sun sinks through the trees while you’re holding
candles and mourning the dead into the morning and beyond into all throughout the year
writing statements and riding waves of emotion that threaten to choke you as surely as
all the murdered disabled and trans people were
and sometimes they’re both and you can’t
draw lines in yourself so you’re drawing lines in the sand and saying “no more”
it’s not knowing where the dread begins and ends in you
it’s not knowing where the dead begin and end in your heart

People with disabilities and mental illness die by a variety of methods every year, many of them murder and suicide. You would rather laugh at jokes made our expense than reform an ableist healthcare system (among other things) and society. No one is saying there’s not a need for better health care, especially for mental health care – but that doesn’t just involve making sure people can adequately access it, but that the healthcare itself isn’t going to compound the issue by treating the person as a problem to be dealt with and being ableist.

And when you talk about mental illness like it’s what’s wrong with the “moral decay” of America… and like it’s what’s wrong with the GOP… you sound like a eugenicist. You sound like the people who, decades and decades ago, held strength and power and influenced state legislation to sterilize us – disabled, mentally ill people (along with people of color and low-income people) – and you sound like the people who committed people with mental illness like me to first “madhouses,” and then later called them “asylums” and then “institutions” and “mental hospitals,” along with people with other disabilities to protect society from us.

You make us out responsible for the nation’s shortcomings, when in reality you have failed to initiate the proper funding and organization of community integration programs for us. You call deinstitutionalization a disaster, and refuse to spend money on community care. You are the reason people think we are horrifyingly dangerous and are more than willing to introduce legislation to strip our rights.

You call us responsible for the things wrong with society and sound like eugenicists.

You Can't Do Disability Rights Without Mental Health Advocacy

Many disabled people's disabilities are mental health needs, or have MH needs comorbidly with their disability. For instance, UNICEF reported that “one chronic physical health condition... significantly increases the likelihood of another physical health condition and mental health conditions.” The lines blur.

I cannot be invisible. I went public about my hospitalization and the fury I felt at Obama and Tim Murphy's scapegoating. It is my hope that there will be one day a world where people can share their stories without stigma, without shame, without fear, without the police mocking the person they had brought into the ER in a MH crisis. It will not be easy. I shared my story because I want there to be a safer world for this, regardless of my personal reputation. With so much stigma, it is hard for other people to share theirs.

Our treatment is supposed to be invisible, our suffering silent, our hospitalizations a secret, shameful and hidden. Many dislike it or feel uncomfortable when we talk out loud about our lived experiences and our suffering and our treatment. When we are visibly having MH needs or in distress, when we are loud about our experiences, we upset people. The disabled community that professes to be proud of different bodies and minds does those of us with mental health needs a disservice.