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Paginated Thoughts
actuallyautistic cat lover with an activism blog.
Tuesday, May 31, 2016
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.
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. 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.
Labels:
disability,
journalism,
media,
mental health,
mental illness,
popular media,
stigma,
suicide
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.
Labels:
ableism,
death,
mental health,
mental illness,
stigma,
suicide
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:
- 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.
- People need access and should have treatment whether they want it or not, because they need it for their own good.
- Access to treatment will fix all the problems and manage the mental health needs well.
- People with mental illness belong in the hands of psychiatrists and doctors.
- Coercive/involuntary treatment and/or hospitalization.
- Awareness!!! The tragedy of mental illness!!!
- 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.
- Stop. The baseline for any treatment should be self-directed.
- See number one. We need community supports, adequate physical health care, stable housing.
- 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.
- See number two.
- 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.
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