Rewriting the Narrative on Psych Ward Abuse in Journalism

Psych Ward Reviews gained a new feature in January 2017: a news article repository of staff-on-patient abuse in hospital psychiatric wards. It is an ongoing effort, both of searches and a morbid set of daily Google Alerts with phrases such as “psychiatric patient abuse.” As part of my search process, I have read over about two hundred articles so far.

One thing of note was that many of the articles on staff-on-patient abuse I found were not in major publications. They were in local news outlets or smaller magazines. And as I knew, there are many failures of psychiatric wards as a crisis care model. These failures can involve staff-on-patient abuse, suicides, ill-maintained facilities, and Medicaid fraud. My focus here is how journalists cover abuse and other failures.

Journalists do so with a few different lines of thought. Many fail to address issues that come with psychiatric wards as the main method of crisis care. These problems include taking away patients’ rights and ability to make decisions. Instead, they discuss issues such as funding and staffing shortages, and overcrowding and bed shortages. However, the reasons for psych ward abuse are power dynamics and ableism.

The system requires institutionalization in secured wards away from the public. Patients then lose their rights (available in theory). The power shifts to doctors and staff, who make decisions about a patient. Many hospitals seek patients for profit. These are settings prone to abuse. We must build a stronger network of community-based crisis care, including peer respite centers and support. There must be meaningful oversight and accountability for any community care providers.

But why don’t journalists talk about creating alternatives to psych wards? The reasoning by many journalists is that shortages result in increased abuse and neglect of patients by staff. They then describe hospital failures as inevitable because of these shortages. But the psych ward system’s issues are structural, rather than wholly solvable with money. Journalists could instead talk about these structural failures. They could do so in many ways.

They could cite the various works around abuse in institutional settings, and question power imbalances. They could push for more accountability and data on abuse rates in articles. They could interview former patients, to see what community options they want. Depending on the size of their platform, they could craft a new crisis care narrative for the broader public. The narrative would present alternatives entrenched in community-based, rights-affirming crisis care.

 

2016 was lighting candles to mourn, but it was also carrying torches high

Year in Review: 2016

 Disability Rights, State of the Blogger, and Looking Ahead to 2017


  • Progress in 2016
    • #CripTheVote and disability on stage in U.S. politics
    • Disability Intersectionality Summit
    • Other moments in disability rights
  • State of the Blogger
    • Overview of the blogger’s 2016
    • Looking at, and valuing, disability and autistic history
    • Top five viewed posts and pages
    • Posts and pages that I liked but had fewer views
  • Looking Ahead
    • 2016 as an atypical year and the blogger’s plans for 2017
  • Conclusion

Progress 

#CripTheVote and disability on stage in U.S. politics

cripthevote-2

The logo of #CripTheVote, designed by Mike Mort. Blue text reads: #CripTheVote. There is graphic-design image of a voting ballot box with a ballot being dropped in. The ballot box has four blue squares, with line art in white of the standard wheelchair user disability icon, a brain, a pair of hands signing, and a person walking with a cane.

 

In 2016, Alice Wong (Disability Visibility Project, which chronicles disability stories), Andrew Pulrang (Disability Thinking blog and Center for Disability Rights), and Gregg Beratan started #CripTheVote, which is

a nonpartisan campaign to engage both voters and politicians in a productive discussion about disability issues in the United States, with the hope that Disability takes on greater prominence within the American political landscape. We hope to encourage people with disabilities to engage with the election at all levels from President on down, and to vote. We also want to hear candidates engage with disability policy issues and disabled people as much as possible.

They hosted Twitter chats, provided resources to disabled voters, and sparked a more organized engagement with politics from the disability community. It brought disability to the stage of politics in a major way, and enabled disabled people to have a central platform to organize around and put their resources and news.

Hillary Clinton released an autism plan and announced support of the Disability Integration Act after an autistic person stood up and asked if she supported it, leading to then-candidate Bernie Sanders co-sponsoring the bill. Then at the Democratic National Convention, a disabled person – disability rights activist Anastasia Somoza – took the stage. 2016 was the year, as Dylan Matthews writes, that disability rights broke through in national politics and disabled people became seen as a constituency by politicians.

Disability Intersectionality Summit

This year, the Disability Policy Consortium accepted proposals and held a Disability Intersectionality Summit. Presentations included topics on the intersections of being undocumented, being LGBTQ+, being a person of color, having mental health disabilities, on #DisabilityTooWhite – the hashtag and movement around the the disability community’s failure to represent racially diverse voices – and more. It was held in Boston on November 5.

Other moments in disability rights include: 

Disability rights groups struck a major blow to sheltered workshops.  Maryland voted to end subminimum wage. An investigation has finally opened into Illinois’ group homes for disabled people. A major Minnesota job provider for disabled people agreed to reform its hiring practices. Michigan banned non-emergency restraint and seclusion for disabled students. Georgia’s governor spoke in favor of Employment First policies for disabled people in Georgia.

The FDA finally put out a proposed rule for banning contingent electric shock devices like those used at the Judge Rotenberg Center. A major case involving a girl and her service dog went before the Supreme Court, and could open up an easier path for disabled students and their families to make schools comply with various laws. Litigation against Georgia’s substandard, segregated “education” system called GNETS for students with disabilities by the Department of Justice moved forward.


State of the Blogger

Overview of the blogger’s 2016

It was a hard year, like it was for many. I spent a serious amount of time dealing with badbrains. I wrote about the dehumanization of psychiatric wards here. I adopted a cat, though, so that makes up for a lot of things.

In terms of other advocacy, I continued volunteering for a non-profit’s social media that I have done since 2015. I also kept working for a non-profit that I been with since December and continued to blog. I began work on a great number of blogging projects like Autistic Community on Medium, and Welcome to the Autistic Community on Tumblr. I also ran Autistic History Month this year.

I also decided to turn my life experiences and history research into writings for publications and have published with the Establishment and the Deaf Poets Society on institutionalization and psychiatric wards, eugenics history and Buck v. Bell, and my experience with housing in college.

Looking at, and valuing, disabled and autistic history

In addition I have been working on my disability history/eugenics history blog more. I revamped my eugenics history 101 post into a downloadable PDF. and updated the resources list for that blog. I worry a lot about eugenics as a popular movement being back full force – it’s still here, in some areas and ways.

I also ran the Autistic History Month blog this year; a link compilation for autistic history can be found here and the posts for 2016 here. As Sarah Pripas-Kapit and I remarked in the closing post for Autistic History Month, history is essential to working for change today:

Thank you for furthering the knowledge of autistic history, and showing that we have a history. I am the first to admit that I don’t know everything about autistic history… Knowing history is vital, especially in this time of turmoil for many. Knowing autistic, and other disability history, is vital. If we don’t know how we organized and formed communities in the past, it’ll be harder to organize and sustain community now. -Kit Mead

It can be tempting to believe that history is an upwards trajectory, with things always getting better and better. Historians call this the “Whiggish view of history.”

Yet the Whiggish view of history oftentimes is not supported by evidence… While the past ten years has been a period of progress for the autistic community, I fear that we may be heading into a period of regression. As so many others have said, the election of Donald Trump to the presidency is looking to be disastrous for people with disabilities. Like many of you, I am concerned about the months and years to come.

History tells us that civil rights are never a done deal. We have to work continually to uphold them.

But I hope that history can also provide hope. We are not the first generation of disabled people to face an ableist state and rollbacks of progress. By looking to the past, we can find a way forward during these turbulent times. -Sarah Pripas-Kapit

Top five viewed posts and pages

Posts and pages that I liked but had fewer views


Looking Ahead

2016 as an atypical year and the blogger’s plans for 2017 

Like s.e. smith says, 2016 was not normal and therefore, we should not allow ourselves to long for 2016 and make it a crowning glory of years that we look back to sometime in the middle of 2017 and go “well, things were so much better then!”

I really recommend reading the post by s.e. smith for how we cannot normalize 2016 because it wasn’t normal. We lost a lot in 2016 and our state of politics has steadily descended into even more chaos than usual. It’s not like I particularly look forward to the next several years’ potential events, but I will take a lot of pride in being alongside many other great activists, working to keep what progress we have made.

In 2017, I will continue to update my post-election resources page and continue my advocacy work, sharing and disseminating resources. I will continue to blog about the things that mattered before this election, and will blog on the things that matter more now because of the election.


Conclusion

2016 may have been holding candles up against a darkening sky in mourning, but it was also keeping candles lit and torches high against rain and darkness. We made a lot of progress in many different areas, and we also lost a lot – but we have faced dark times before, though never like this. We will work against the rapidly encroaching darkness of night to be lighthouses in the fog and darkness for many ships. Torches held high, we face 2017 and the years to come.

Autistics in Mental Health Crisis (second in a series)

Autistics in Crisis Part Two: Crisis Aversion or Resources We Need

But knowing all those things I talked about in part one would not have kept me out of their ERs (preventing the crises in the first place). Knowing all those things would not solve the systemic issues contributing to crises. There are a lot of reasons Autistic people have crises. Quality of care if accessed, past or current trauma, isolation, a lack of community mental health resources, and other systemic barriers – often alongside co-occurring mental health diagnoses – combine to put people in crisis mode.

Both access to and quality of mental health care are issues for Autistic people. Many of the Autistic people who do access mental health care have reported pressure to “treat” their autism, and other mistreatment by mental health professionals. Even among professionals who do not seek to “fix” autism, Autistics’ distinct and various methods of expressing emotion and language can leave unprepared professionals at a loss and Autistic patients frustrated. There are also other factors. Some have difficulty navigating the health care system and lack support. A large number of Autistics can’t afford care for any number of reasons.

One Autistic writer highlights many of the above systemic barriers in a piece on autism and suicide (suicide crises are not the only mental health crises that occur, but Autistic adults without intellectual disabilities are nine times more likely than non-autistics to die by suicide). The author also discusses unemployment along with barriers to autonomy and social connection as contributing factors to Autistics’ high suicide rates. Here are some of the solutions the author offers:

We can be attentive to people who seem isolated and intentionally include them. We can check up on people who are known to be struggling… We can make our community welcoming to newcomers who desperately need the shelter of Autistic space. We can spread the word about autism-friendly mental health services… We can advocate for policies that support independence, like employment first and walkable communities.

For me, it would have been really helpful to have a 24-hour drop-in center or peer respite center (an alternative program where people in crisis can stay, staffed by people who have experienced mental health needs) somewhere nearby. There weren’t other options for me to stay safe. One study has indicated that peer respite centers result in better outcomes (for a variety of mental health needs) than psychiatric inpatient treatment, and there is a growing evidence base for supporting peer respite centers. 

Another resource would be a mental health phone (and text-based as Autistics can have a hard time with phones) line geared for connecting a person with services or other peer support when they are not at a crisis point. They would get connected based on level of need and which care they wanted. It would have a diverse staff to help make sure people did not end up with people mistreating them if they have a certain identity. Some similar projects, though not quite with that scope, already exist. One project called Project Warmline – people who need someone to talk to can speak to someone who has mental health needs – is in Oregon and has received state funding. Some other warmlines are listed here. It is not inconceivable that these projects could expand. 

There are significant gaps in community-based mental health resources. There is also a failure to address systemic barriers for Autistic people and improve quality-of-life research and supports by the largest sources of autism-related funding. These factors create a complex push into crisis mode for many Autistics. We can push for policy changes and support one another as fellow Autistics.

. . .

This is the second in a series of posts.

Autistics in Mental Health Crisis (first in a series)

Autistics in Crisis Part One: The Personal or What I Wish Professionals Had Known

In January 2016, I sat in a large chair in the ER of George Washington University Hospital (GW), with my gown tied on backwards because I had never gone to a hospital for feeling unsafe and suicidal before. The ER nurses thought I would know how to tie a gown; I didn’t. Nurses came and went, occasionally conversing with me or asking questions while I waited on the social worker. Once she arrived, the social worker said to me, “more like Asperger’s, right?” I had told the nurses I was Autistic.

She didn’t seem to believe me when I corrected her.  “I’m Autistic.” It made me uneasy even in my fight or flight panic mode. At least it was something I could actually manage to put words to through rote memory. I gave her a rundown of why she should call me autistic as I had said, and I don’t know if she took any of it to heart. She also seemed to blame being autistic for my social isolation. I wish she had known that correcting someone’s statement of identity because of how they present is not okay. I wish she had known that a lot of my social isolation didn’t come from autism itself, but from factors like adjusting the area, where I was living in the area, and a lot of non-disabled people being weird about autism and visible neurodivergence.

The fluorescent lights hurt and left me with dancing spots of color in my vision. The chatter of nurses around me, other patients calling out (just wanting to go home), and the ringing of phones and intercom announcements pierced my hearing. I cried from emotional pain, but also from being in sensory hell. Not being someplace quiet and dim made it even more overwhelming.

Later that year, in June, the ER was bright and loud at Georgetown University Hospital, but I did tie my gown correctly this time. They took me to a quiet room so I could be in a less overloading area to talk to the resident, but then they brought me back to the main ER section. I wish both places had known that it’s really hard for Autistic people and people with sensory processing issues to be in an ER. I wish they would have tried to find a way to reduce the sensory input, like giving me earplugs, and putting up a partial curtain to block the lights.

At Georgetown’s ward, they were a lot kinder and had different expectations, though I still felt confined, because it was a psych ward. There weren’t the assumptions about autism this time. They gave me earplugs to help with the lack of absolute quiet on the ward. In the ward at GW, yes I was in a depressive episode. No, I didn’t want to talk to a bunch of people I didn’t know in a place I’d never been before (with no Internet or cell phone access). No, I didn’t want to go to groups – they should have stopped pressuring me. I’m Autistic. Strangers and new places are hard for me. I wish GW had known that.

. . .

This is part one in a series of an unknown number of posts.

 

“end the stigma” and ableism in the same breath

They mention Adam Lanza. They always mention Adam Lanza. The mentally ill need treatment, they say. They’ll end up like Adam Lanza. End the stigma, they say. Talk about your mental illness! We can end the stigma by you sharing your stories and struggles. Then they mention Adam Lanza.

Treatment is important. No one has access to treatment. Treatment is code for institutionalization. People with mental illness are in jail a lot! Like the man in the tree, who should be hospitalized indefinitely – the solution to incarceration is more hospital beds, they say.

Someone lies down on the floor in the hospital. They medicate him. Someone gets forcibly medicated, restrained, made fun of, and mistreated in the hospital. No one cares.  The faceless professionals give you a sleeping aid, a paper-thin blanket and an anti-anxiety drug, sometimes more. They give you a paper cup with water to take the pills with. The pills will keep you safe, they say. There are more pills. There have always been pills. The side effects don’t matter, historically and now. But – end the stigma of being in the hospital! Hospitals are good for people. They are friendly places that only want to help. They help! They can keep people from turning into Adam Lanza.

Your hospital bills come in the mail. They charge you over a thousand dollars with insurance. If you don’t have insurance, well, good luck. They charge you for the psychiatrist. They charge you for the therapists. They charge you for the ER visit. They charge you for general inpatient stay.  There are a lot of bills. They send you another hospital bill every week.

You can recover, they say! Just try harder. Be compliant. Doctors know best. No self-directed services. You don’t know what’s best for you, they say. Recovery should be your goal. Recovery is the only thing worth trying for when you’re mentally ill. End the stigma, they say. Talk about recovery.

You tweet into the #MHM2016 hashtag with a post you wrote as a mentally ill person expressing displeasure at the focus on access to treatment. You get exactly one retweet and two favorites. No one else notices or engages with you.

The members of Congress consider legislation, H.R. 2646, that will slash funding for programs to keep you from being homeless and restrict programs that protect your rights. Forced treatment is more important than stable housing, after all. They mean you belong in a hospital. They mention Adam Lanza.

Family members write articles called “I am Adam Lanza’s Mother.” They are always talking about Adam Lanza and treatment. Treatment is important. No one has access to treatment. Treatment is code for institutionalization. The Protection and Advocacy for People with Mental Illness (PAIMI) programs made my child homeless, they complain, they could have gone to an institution instead!

President Obama makes remarks about the San Bernardino shooters being sick in the head. The Obama administration declares May Mental Health Awareness Month. May officially is on your blacklist now.

While Obama’s executive order came down, I waited on a bed in the psych unit

Just because it shows less to strangers doesn’t mean it’s not there. While Obama’s executive order came down, I sat in a hospital emergency room waiting for a bed in the psych unit. I had just explained to about five different doctors the Bad Thoughts that led me to the hospital.

No, I don’t have a representative payee. For all intents and purposes, I appear independent. Does this mean I should not care? For my friends who have representative payees, and for the continued stigma against having mental health needs, I do care.

My friend consoled me as I broke down on the phone before going to the hospital, and told me it was brave to get this kind of help with all the stigma that surrounds it. While my friend has not reached this level of mental health crisis before, they know all too well the dialogue surrounding mental health. Uncontrollable thoughts raced through my head as I waited on the chair, mixed with frustration at my brain being out of whack again. The thoughts that drove me there were far more intense than usual.

I missed most of the initial window in which to respond to Obama’s executive order because I had no internet access. I relied on phone conversations with friends, individual therapy sessions, playing cards with fellow patients, mealtimes, naps, and books to pass the time.

***

The history of people with mental health needs is one of rights denied. Institutions for us are still a fairly recent history, and a failed project. Do we have the supports we need in the community yet? Absolutely not. About our rights: should we be able to own guns?

Obama’s executive order affects not just those with mental health needs, but anyone receiving SSA with a representative payee who controls their money. Obama’s executive order is trying a one size fits all policy instead of individually tailoring background checks to search for patterns in past behavior of wanting to hurt people (I cannot propose an adequate policy for those with suicidal ideation in their history, such as mine, even though I do not own a gun and do not want to because I do not need one. I grapple with this.) The answer to should we own guns? depends specifically on the person. People with mental health needs are people, after all.

***

I managed to convince one of the psychiatrists at the hospital that the Murphy Bill needed significant reform or outright rejection. I have talked about the Murphy Bill extensively in the past (here’s an article on it.) I have always worried about it. I am a person who needs psychiatric care to thrive. I have accepted this about myself long ago. I want my treatment to be as private as I choose. Already some big companies are slipping up with HIPAA violations. If enough action is not taken, soon it will become a moot point.

When you have mental health needs, some people are determined that you should make a full recovery for the sake of society itself and then mock you for getting help. It is okay for recovery to not be your goal – maybe your goal, like mine, is just to learn coping skills – but regardless, quality treatment should be accessible to everyone at their own pace.

The Murphy Bill will it make it harder for people to willingly access treatment if they know their information is vulnerable. The Murphy Bill’s solution is to simply force treatment and then strip us of our rights and protection against abuses.

Call or write your representative today. Tweet at your legislators. Find your rep at http://www.house.gov/representatives/and then use the generic contact us form. Call to the Capitol Switchboard at 202-224-3121 and ask for your representative and ask them to oppose the Helping Families in Mental Health Crisis Act (HR 2646).

There is a federal relay service for d/Deaf people listed at the bottom here  http://www.house.gov/content/site_tools/accessibility.php)

***

Some people are calling for the return of “asylums.” It will be horrifying to see what legal loopholes they try to uncover in their quest. They are using people like me to further their ideas. They are saying people who end up hospitalized, especially those who experience repeat hospitalizations, are cause for a so-called safe place to keep us (but institutions are not safe; take a look at this history, no matter how altruistic the intentions, they limit freedom and are not safe). 

They would rather not fight for community change and community funds. They are talking about our cost, our safety, our inability to care for ourselves, our pitiful state, our drain on society.

They are talking asylums and echoing the language of eugenics.

***

The Murphy Bill and Obama’s executive order generalizes people with mental health needs and uses us to create public fear. A return to asylums is unthinkable.

Imagine a world that is already hard enough to navigate because of mental health needs. Now imagine everyone blames you for mass shootings. Imagine that someone could reveal your secrets to people they see fit, even if it’s not an emergency. “But not you personally! I don’t think of you as mentally ill.” Yes, me personally. I am someone who has mental health needs. Just because it shows less to strangers doesn’t mean it’s not there.

The sections become shorter as I have less and less to say, recycling words and trying to convince you that an entire group of people’s humanity is worth respecting.

***

Further reading links to come