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.

A response to “Penn ethicists call for the return of the mental asylum”

Originally posted on Tumblr (k-pagination.tumblr.com)

A response to “Penn ethicists call for the return of the mental asylum”

Adapted from Facebook.

Summary [tw mental institutions at link]: UPenn bioethicists are proposing for the return of a patient-controlled mental asylum that would help keep the mentally ill out of prisons and with a place to stay so they are not homeless.

In 1977, Judi Chamberlin, a former mental patient, wrote, “The whole experience of mental hospitalization promotes weakness and dependency. Not only are the lives of the patients controlled, but the patients are constantly told that such control is for their own good, which they are unable to see because of their mental illness. Patients become unable to trust their own judgment, become indecisive, overly submissive to authority, frightened of the outside world. The antitherapeutic nature of mental hospitalization has long been recognized.”

We need community supports. It has been known by mental patients who founded their own liberation movements and their own support groups. It was legally ruled as such for states in 1999 in Olmstead v. L.C., which mandated that states must provide community integration supports before institutions.

State-run or not, we should not be in institutions.

If the problem is that we are going into prisons and into the streets, then there are not enough community supports in place.

The principle of “charity” that said it would be more humane to house us in institutions to get us off the street is what caused the original burst of institutions. What makes anyone think this would be different?

The article says “He envisions asylums built in a campuslike environment with varying degrees of security. They would be “patient-centered and collaborative,” and “modeled on the principles of the recovery movement, which emphasizes patient autonomy to the extent that that’s possible.”

The first problem is that “varying degrees of security” - no one would be free of the institution, to come and go as they please. “Security” translates to “they only leave and go places when we tell them to.” Additionally, the “patient autonomy to the extent that that’s possible” part essentially leaves that in control of the “professionals” - the extent to which patients can make decisions becomes largely dominated by the professionals.

The second problem is places have already tried that and it failed because the staff ended up mostly controlling it, even if it started out perfectly “come and go as you please” (see: Fountain House). The division between those seen as “sick” and “needing help” and the “normal” and “helpers” tends to get very wide very quickly. It is also kind of a slippery slope thing where you can start a place with the best of intentions and it all goes wrong, and then more institutions will happen and we’ll be back in the 1940s, 50s, 60s, 70s before you know it.

Judi Chamberlin also wrote: “A tremendous gulf exists between patients and staff in mental institutions. Patients are seen as sick, untrustworthy, and needing constant supervision. Staff members are seen as competent, knowledgeable natural leaders.”
This is still largely the case with stigma against mental illness and disability. The stigma is too pervasive for that to even begin to work - with any level of “staff member.”

No amount of mental institutions will help the mentally ill in the long run. These places damage people’s self-worth. They create a sense that the person cannot return to the outside world, that the person is broken. No matter how altruistic the intentions, they do not work. At best, they trap people for significant periods of time in places with little to no freedom. At worst, they degrade into physical abuse, malnutrition, overcrowding, and injury. Best or worst, they depersonalize, dehumanize, and remove control from people.

Sexual, romantic and gender identities for disabled people

[TW: brief discussions of sexual assault and abuse of disabled people]

 

I. Personal Brief on the Matter of Gender, Sexuality, Romantic Orientation

I’ll start this off by first saying what people need to know: sexuality, gender identity, and romantic orientations are not all the same. Of the three, sexuality and romantic identity are often conflated, but may not always match.

I’ll also give a brief on myself. I’m pretty sure I’m demiromantic and demisexual for all gender identities. Any crush that I’ve had on a person without an emotional connection is an infatuation, one that I never even want to act on, ever. Any romantic interest, however, sprang up after friendship or feeling a strong emotional connection, even if we weren’t actually quite friends. Any sexual interest has come about the same way. It’s happened with cisgender men, cisgender women, and nonbinary people (including those who identify as androgyne, agender, neutrois, etc.) so far.
It’s been confusing in a society where people have sex without emotional connections all the time, so sometimes I kept assuming I would be like that too. I’m not. In other news, at least the “not straight” label I’ve realized since I was 17. I’ve been developing my concepts of sexuality, romantic identity, and gender identity since then, introspecting each time I learned something new. At 21, I identity as as demiromantic and demisexual toward all gender identities, and nonbinary and agender.

II. Fights for sexual and romantic orientation equality, gender identity equality are also disability rights.

It’s a multi-pronged issue, where

• Disabled people are often not educated about gender, sexuality, sexual activity, and romantic orientation because it is assumed they will not understand it, need it, or ever experience anything;
  
• Disabled people are often told their body is not their own, anyway;
  
• Disabled people are often put in situations where it is harder for them to escape sexual abuse and abuse in general because of mobility issues (harder to physically leave), stigma against them (people do not believe them, or the perpetrator receives pity for bothering to interact with disabled person), internalized beliefs that their bodies are not their own, people not understanding their communication of the matter, being gaslighted into believing they are the problem, and other reasons;
  
• Disabled people are encouraged to not have relationships where children could occur;
  
• Disabled people are often used as scapegoats by the pro-choice movement, and often leaves out disabled people in accessibility and discussions. While the pro-choice movement is one I support, I am also disabled, and we should not be thrown under the bus.
  
• Disabled people are often multiply marginalized through sexuality, gender identity, romantic orientation, and other intersections;
  and
  
• Other people are told by society that disabled people are undesirable.
  

My mother did not assume that I would be automatically be devoid of a sex life and dating life in the future and spoke to me about various things relating to sex-education when I was a teenager. Her assumptions weren’t based on that people with asexuality don’t exist, it was more of the fact that just because I was autistic didn’t mean I wouldn’t ever. And aromantic and asexual people can have sex, also. I am fortunate, I suppose, that thus far no one has ever tried to be like “but you’re developmentally disabled, you can’t have a different sexuality/romantic orientation/gender identity!”

Which is a thing that happens to people with disabilities. It’s much more common for people with mental illnesses related to psychosis, however, to get thrown under the bus in the regard of gender identities. The lack of representation for them is concerning on several levels; people with depression and anxiety, though still stigmatized against, are considered more “mainstream” and “common”.
When people think of mental illnesses like depression and anxiety, you think chronic sadness and being worried (though it’s more complex than that), and when people think of ones related to psychosis, they think horror movies or someone being tied down in a mental hospital.

Consequently, the idea that these people date, have sex, have gender identities and sexualities and romantic orientations can shock people. Gender identities by these people are often questioned, and they may be told that it is invalid because they’re “so mentally ill” and must not not be able to figure out the difference between their bodies in reality and their mental state.

Disabled people also are assumed to be aromantic or asexual. When people say such things to you and you are not, just say, “Well, I’m not, but some of us are.” Aromantic and asexual are not bad words. Yes, the trope exists that we do not date, have sex, kiss, or experience attraction on romantic and sexual levels, but some of us do and some of us don’t, and neither one of those is due to the disability. It’s okay to say that you’re not if you’re not, but don’t do it in a way that harms another community.

Disabled people, especially women, are also victims of sexual assault. The Utah State University’s page on Sexual Assault and Anti-Violence Information has information on “Interpersonal Violence and Persons with Disabilities;” these stats include:

• Among adults who are developmentally disabled, as many as 83% of the females and 32% of the males are the victims of sexual assault.
  

• For individuals with psychiatric disabilities, the rate of violent criminal victimization including sexual assault was 2 times greater than in the general population (8.2% vs. 3.1%).
  

• It has been estimated that 83% of women with a disability will be sexually assaulted in their lifetime.
  

III. Conclusion

It’s about time disabled people got included and remembered in dialogues, narratives, and discourses about gender identity, sexuality, romantic orientation, sexual abuse, reproductive issues other feminist issues, because we’re here. Disabled people have been raising their voices about it now for a while, from the pending non-profit Queerability to people writing articles for the Huffington Post, to individual people writing their stories.

The Murphy Bill Has Gained Support of NAMI-NYS

 This is not a good thing, by the way. 

[TW/CW: Ableism, shooting, institutionalization]

From MindFreedom International on Facebook:

"On Friday evening, November 14 at 6:00 p.m., the NAMI-NYS membership will “stand united” in presenting the 2014 NAMI-NYS Legislative Champion Award to Congressman Tim Murphy, for authoring H.R. 3717 called, The Helping Families in Mental Health Crisis Act."

I will post a transcription of the Autistic Self Advocacy's document on the Murphy Bill, along with an image of the document below, and I urge to you write/call to your Congresspeople against this, and spread the word.

"Why Your Member of Congress Should Oppose HR. 3717 
After the Sandy Hook Elementary shooting. Rep. Tim Murphy (R-PA) introduced HR. 5717, legislation designed to take advantage of media associations inaccurately linking mental health and violent crime to rollback civil rights protections of people with psychiatric disabilities. It is intended to completely change the current state of mental health services to make it easier to forcibly treat people with psychiatric disabilities, expand institutionalization and reduce privacy rights and legal protections. Here are some talking points you can use when speaking with your congressional offices about why they should oppose HR. 3717:

Privacy
The bill would reduce privacy protections for both people with mental illnesses and people with intellectual and developmental disabilities. The bill allows disclosure of confidential psychological and psychiatric information to family and caregivers in additional circumstances to those already defined in current privacy laws. Right now, doctors and therapists can give confidential health and mental health information to family and caregivers in emergency situations or if they have permission from the person getting treatment. The bill would allow doctors and therapists to give confidential health and mental health information to family and caregivers even without permission and without emergency circumstances.

The bill also allows for greater influence from family and caregivers, including forcing involuntary medication and institutionalization.

Institutionalization
The bill will provide federal government funding for more institutionalization. This will mean less money is available for other community-based services. The bill will also cut the budget for the Substance Abuse and Mental Health Services Administration’s community integration projects to a little over a third of what it is now.

The bill would also require all states to create programs that allow judges to order people to take psychiatric medications that they do not want to take. The best way to help people get mental health treatment is to make it available and give people support, not to get the courts involved.

Legal Protections
The bill takes away many legal protections available to people with mental illnesses through the Protection and Advocacy program, which is the largest and most accessible program for legal services for people with disabilities. Over 80% of the funds for Protection and Advocacy for people with psychiatric disabilities would be taken away.

Economics
The bill establishes an unnecessary assistant secretary position to oversee the Substance Abuse and Mental Health Services Administration which would be financially supported by a portion of the budget allocated to supports for people with mental illnesses.”