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.

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.

Best,

Kit

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 Autism Acceptance Month

We put so much into trying to reclaim “Autism Awareness Month,” our reactions informed by trauma, abuse, neglect, and pain. It is the month where many of us are surrounded by blue lights and puzzle pieces. We turn to seeking those out and commenting furiously, fueled by pain and anger – with mixed results. We write long blog posts and hold acceptance events trying to counter the flood of “awareness.”

We have made some progress, such as Apple calling it “autism acceptance” with no mention of “awareness.” This is important that people saw it called acceptance, though many don't have access to iPads, which is concerning and needs to be addressed. We're getting the word “acceptance” more mainstream.

But what if we put some of the same energy into claiming our other Autistic holidays that we made ourselves? Autistic culture can blossom further if we allow our holidays to grow, to become cultural phenomena that is talked about outside autistic circles:

·         June 18 – Autistic Pride Day  

·         November 1 – Autistics Speaking Day

·         November – Autistic History Month 

I do not oppose working for acceptance during April, obviously! I am of course against LIUB and the like. But what if we put some of that April energy into being for things relating to autistic culture and pride, instead of mostly focusing on a month where it's a constant being against things like Autism Speaks and “awareness,” which can be exhausting? 

What do you think? 

Been putting a lot of stuff on Medium

https://medium.com/autistic-community/on-everything-i-love-and-want-to-succeed-be3fe8dbb9c5#.x44lo2x4g

https://medium.com/psych-ward-experiences/the-public-conversation-on-mental-health-and-dangerous-legislation-part-one-18654e966c42#.5j1tfh12j

https://medium.com/@kpagination/on-world-bipolar-day-and-seeing-people-with-mental-health-needs-as-people-526b1077d8ec#.npwkiacgo

I'll update this blogspot with a post at some point, ha.