Autistic community issues: “Gatekeeping words” edition

*Update: The autism ask blog has posted a well-worded apology after taking the time to consider many of our thoughts and feelings on the matter.

Tumblr folks: This is an expanded version of my other post.

There has been (another) recent kerfluffle regarding language (this instance is on Tumblr). Specifically, people are gatekeeping the term “special interest”. An autistic person decided that an ADHD blogger who manages a blog for ADHDers was incorrectly using the term special interest due to her being non-autistic. Despite her providing evidence that it is not autism-exclusive, the person went to an autism ask blog. There, they were told the term is autism-exclusive. The autism ask blog is wrong.

With that context: I am an autistic person with ADHD, and I have a request. Could you stop telling me that I have to use two different words to describe the same experience I have that I have no idea which “diagnosis” it comes from? (By the way, brains are not partitioned like that, so my neurology is affected by both, sometimes in very interchangeable ways that you don’t know which one is which!)

And the autistic community, as one blogger​ points out here– has a pretty long history, and we haven’t been this exclusionary with words from the start. I have put together and managed submissions for some of that history at ourautistichistory​ (Autistic History Month). And some of it is probably lost as domain names expired or the list servs went defunct. But the moderator of the actuallyadhd​ blog, who has ADHD, has been involved with list servs and later platforms of the autistic community since 1994. She is an autistic cousin, which is a decades-old term that refers to someone “who is not NT, is not quite autistic, but is recognizably “autistic-like” particularly in terms of communication and social characteristics.”

To ignore that fact, along with the first blogger’s note that these kinds of words have not been considered exclusive to the autistic community from the start – which is roughly three decades ago – is negligent. A community should know its history, and we need to know our history to work for change. 

And it tells people that we are not a community that welcomes people unless they share our specific neurotype. It tells many people who are wondering if they are autistic that we are a community who will not welcome them. That may make them afraid to approach us, or learn more about autistic community and autistic culture. It tells people we are a community who is willing to gatekeep, and that is not what I want people to think of the community I love and fight for.


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


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


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.


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 (third in a series)

Autistics in Crisis Part Three: Stop Mishandling First Interactions with People in Crisis

Even if we had the best resources for Autistics to access, mental health crises in Autistic people will still sometimes occur, and there will still be situations where a non-crisis gets reported to authorities as such. I feel fortunate. My experiences, particularly at GW, were not ideal. But I did not have forcible intervention from authorities. I feel fortunate because even though I am at lower risk of injury from crisis intervention teams (as I am white), forcible admission to a psych hospital (also known as, you know, forced institutionalization, whether short term or long term) is probably doubly traumatic.

I want to talk about a couple of things in this post:

  • How crisis intervention often goes wrong in regards to the police, and the disproportionate risk that autistics of color (with and without mental health disabilities) face here, along with autistics of other marginalized groups
  • Some steps to improve the first interactions by police and first responders with autistic people in crisis, both policy and otherwise

How First Interactions with Autistics in Crisis Go Wrong

For Arnaldo Rios-Soto, an autistic Latino young man now institutionalized in Carlton Palms because the state of Florida fails to provide enough community supports to its disabled community members, even playing with a toy truck in the street resulted in a person calling 911 to report Rios-Soto being suicidal and a threat. The police shot and injured his black therapist, Charles Kinsey, and then claimed they meant to shoot Rios-Soto. The police responded to the scene of an alleged mental health crisis involving black and brown people, and shot Charles Kinsey.

As Autistic activists of color Lydia Brown, Finn Gardiner, and Manuel Díaz wrote for Sojourners:…Whether the officer was actually aiming for Kinsey or Rios-Soto, he has become part of a national pattern. Disabled people represent between one-third and one-half of all people killed by police. Black and brown people are extremely disproportionately likely to die in police-involved shootings… If you’re black or brown and disabled, your likelihood of being targeted by police only increases.”

When I asked Timotheus Gordon, Jr., who in his own words is  “an autistic African-American blogger, writer, event photographer and self-advocate in Chicago” what he felt when he heard what the police said about aiming for Rios-Soto, Gordon told me: “…the fact that the police tried to shoot Rios-Soto instead of Kinsey confirms my fear of walking on the street as an autistic person of color… Disabled people of color can play with a red toy truck, calm down from a meltdown, or rollerblade peacefully on the block and still get harassed by people.”

Finn Gardiner, who co-authored the Sojourners piece, added: “The issue of police violence is compounded if you belong to more than one marginalised community. For example, if you’re an autistic, trans person of colour, the combined effects of racism, transphobia and ableism will make you even more at risk for harm… You may have your identity completely erased. People may only see your race and not your gender identity or your disability.”

Crisis intervention also went wrong in the case of Kayden Clarke, a trans man in Mesa, Arizona. Denied a recommendation for hormone replacement therapy by his therapist because of an Asperger’s diagnosis (placing him on the autism spectrum), he became suicidal. In early 2016, after receiving a report from a worried person, the police arrived at his apartment – and shot Clarke, killing him. The police knew Clarke had an Asperger’s diagnosis.

And in February 2012, Chicago-area police shot and killed Stephon Watts, a Black Autistic teenager as he panicked while holding a knife. I wrote in February 2016 (on my previous blog), “…the police had shown up to “subdue” him…. many, many times in the past. To have had such encounters with the police, which were undoubtedly physical in nature, would be traumatizing.  Even if Watts had not been panicking in the first place, to lash out from fear of being “subdued” again is the result of a fight or flight response… As a Black Autistic, Watts faced multiple marginalization from society, with ableism and racism as a reaction that killed him.” The police knew Watts was Autistic.

And the New York Times recently reported that the NYPD uses “restraining bags” for arrests and crisis intervention, particularly in situations involving those with mental health disabilities – as the Times noted, “the bags are used to restrain those judged to be emotionally disturbed.”

These are just a few examples of the way police handle crises. 

What Are the Solutions?

Like Brown, Gardiner and Díaz, Gordon notes which people are often the targets of such harassment and police shootings: “I also dislike [the] repetitive connection between police violence and victims being disabled people of color.” Gordon went to say what he thinks is a solution to police shootings and mishandling of crisis intervention: “I want racial justice and disability rights/justice organizations to collaborate…  The collaboration MUST include organizers and activists in the disability community and ensure that actions are accessible to all participants.” Gardiner agreed with Gordon on the need for collaboration.

In terms of policy work that advocates can work for, a broad measure for police accountability overall as opposed to just crisis handling is H.R. 2302, the Police Training and Independent Review Act, which would cover comprehensive reform – not just police training on disability and racial/ethnic bias, which many of the officers involved in shootings receive – it also requires states to appoint independent prosecutors to investigate and prosecute police-involved shootings before receiving certain federal funding.

More specifically, we also need to create mobile crisis teams that aren’t police. 911 operators can dispatch those teams instead of law enforcement. Gardiner told me that crisis teams that know how to “engage with marginalised populations” are vital.

Gardiner also recommended the creation of “comprehensive peer and community-based supports that take into account the effects of marginalisation.” He also recommended “peer support like… warm lines*, advocating for comprehensive, long-term training for law enforcement, [and] encouraging police departments to hire people who are aware of racial justice issues.”

*Warm lines are like hotlines people having a hard time can call when they are not yet in crisis and need someone to talk to. I elaborate on them in Part Two of this series. 

. . .

This is the third out of a series of posts.

About the Interviewees

Timotheus Gordon, Jr., also known as Pharaoh Inkabuss, is (in his own words), an autistic African-American blogger, writer, event photographer and self-advocate in Chicago. He is the creator of “The Black Autist”, a blog that emphasizes autism/disability acceptance among people of color, including people in the black community. Gordon is a first year Ph.D student at University of Illinois-Chicago, pursuing a degree in disability studies. Follow his Tumblr blog for updates:

Finn Gardiner is a Black, queer, Autistic advocate and activist in the Boston area. He currently works for the Autistic Self Advocacy Network (ASAN) as their Boston Community Coordinator, leads the ASAN Greater Boston chapter, and previously worked for the Institute for Community Inclusion as a Gopen Fellow. He has a B.A. in sociology from Tufts University and is currently a public policy masters student at the Heller School for Social Policy and Management at Brandeis University. Follow his blog for updates: 

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.


You Can’t Do Disability Rights Without Mental Health Advocacy

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

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

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

the world is larger than my recycled words

How do I feel? The world is larger than the recycled words I can spit out to try to convince people of disabled people’s value. On December 2, I started my second day of work; on December 2, gunmen shot up Inland Regional Center in San Bernardino, CA. It was the second mass shooting of the day. Inland Regional Center served people with developmental disabilities. I followed a new routine, too tired in the evening to draft a blog post as my newsfeed exploded with the news.

Speaker Paul Ryan announced his intent to push for the Murphy Bill. The shooters shot up a center to serve people with developmental disabilities. The Murphy Bill intends to curtail the rights of people with psychiatric disabilities.

On December 2, I also received an action alert in my inbox from the Arc. The Senate was about to repeal parts of the Affordable Care Act – parts that have helped people with disabilities. On December 3, my Facebook trending topics switched to Planned Parenthood as the Senate bill passed their version of the bill to federally defund Planned Parenthood. A sidenote was that the bill also repealed the Affordable Care Act, which has helped many people with disabilities. President Obama is expected to veto the bill.

People expressed shock and sorrow that someone would do this to a center that serves developmentally disabled people. People fawned over the woman who thanked an autistic person for decorating a cake. Representatives and Senators tweeted heartbreak about San Bernardino. They’ve done their good deed now, right?

* * *

Please explain to me how it is a good deed to be objectifying autistic people into inspiration porn for decorating a cake. There are far more extreme examples, like having to hold a Day of Mourning: Remembering Disabled People Murdered by Caregivers because so many people murder the people they are supposed to be providing care and/or support for. Then explain to me how people can express shock that someone shot up a center that serves developmentally disabled people.

Please explain to me how it is a good deed to tweet heartbreak about San Bernardino when Congress just decided to repeal key provisions of the ACA that would materially help disabled people. Help, rather than just fawn over someone decorating a cake and think they’re helping, or assigning buddies in class to that poor disabled kid, or whatever.

Congress is moving the Murphy Bill rapidly through. H.R. 2646 is the, as Ari Ne’eman put it, “perversely named” the Helping Families In Mental Health Crisis Act.

The Murphy Bill would fundamentally strip people with psychiatric disabilities of their rights. It would
       community-based services.
  • This includes cutting the budget for the Substance Abuse and Mental Health Services Administration (SAMHSA)’s community integration projects.
  • H.R. 2646 will also encourage states to allow forced-medication programs. These would be through court systems. The best way to help people get mental health treatment is to reduce stigma, make it available, and provide support. The solution is not forced treatment.

It was introduced in the wake of Sandy Hook in 2013 to manipulate the public. Don’t let them.

Call or write your representative today. Tweet at your legislators. Find your rep at 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 peoplelisted at the bottom here

* * *

Explain how the Murphy Bill helps anyone with disabilities. Explain how fawning over a cake helps people with disabilities.

Explain how the “good deeds” work then.

Unpublished Letter to the Editor of the New York Times Regarding Op-Ed "The Modern Asylum"

**A long, drawn out version – my own op-ed – is currently in submission to a publication and will not be released on here if it is accepted, but rather linked.**

To the Editor

I am writing in concern about the recent op-ed, “The Modern Asylum.” It must be noted that institutions do not provide an adequate response to the needs of individuals with disabilities.
Institutionalization is not cost-efficient, as statistics provided by Disability Rights Washington show; “investing in a robust home and community based system is an efficient use of limited resources, because it will free up money that is currently being used to maintain institutions.”1
Studies and reports have shown that patients respond better to outside placement, including ones from the Division of Developmental Disabilities Services State of Delaware and the University of Minnesota.2 It is vital that disabled people be given a chance to create their own initiatives outside of institutions.
It is unwise to to insist deinstitutionalization has failed, because it has never been undertaken effectively; states are still funding institutions, though on a smaller scale, and not contributing enough money to properly intregrate people despite proven benefits.3 It cannot be implied that institutions worked and write that “modern asylums” need to return. It is better to shift fully to community integration, the resources for which have not been fully implemented; institutions are neither cost-efficient, nor beneficial to the people locked within their walls. In institutional settings, rates of abuse within current systems still run rampant.4
Total asylums and institutions are a horrifying specter from the past, and cannot return.
Kit Mead
Disability Advocate
2 Conroy, J., Garrow, J. (2003). Initial outcomes of community placement for the people who moved from Stockley Center (Delaware).
Kim, S., Larson, S.A., and Larkin, K.C. (1999). Behavioral outcomes of deinstitutionalization for people with intellectual disabilities: A review of studies conducted between 1980 and 1999. Policy Research Brief (University of
Minnesota, Institute on Community Integration), 10(1)
4  Maureen Crossmaker, “Behind Locked Doors – Institutional Sexual Abuse,” Sexuality and Disability 9, no 3, (1991) 201-219

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

Originally posted on Tumblr (

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.

An Open Letter to Journalists, Bloggers, and People: A Violent Narrative

Autistic people and other disabled people are victims both of violence and of the myth-perpetuating articles and posts that crop up every time one of us is killed or abused.

It’s about “not enough services.”

It’s that the disabled person was “violent.”

The disabled person was “burdensome.”

The disabled person was [tw: murder of Nancy Fitzmaurice] “suffering too much to live.”

I am always disturbed by the ways in which the abuse and murders are justified. I want to read articles without being unsurprised by the fact that we have, yet again, been called burdens. I want to be able to read articles and be surprised if that happens, to have it not be the norm.

The deaths of the disabled have never been about us. Even in death, we are rejected sympathy and mourning. We (activists) should not have to spend all our energy trying to convince people that our lives are, in fact, worth as much as the non-disabled lives and defending our dead and abused. We should be able to spend our energy on just making disabled lives better, on helping each other through life, regardless of whatever we do in the traditional, societal sense of productivity.

My friend wrote that:

“London McCabe was a wanted child.

If you are a blogger or journalist telling the story, know that much.  Get that right.  Even if no one in his biological family wanted this boy, the autistic community did.  We wanted to enjoy sharing life and our affection with him. We wanted to help him grow into the best and happiest person he could be and have a wonderful life…”

The stories do not focus on this.

The stories that say [tw: ableism] “Oregon autism death raises awareness of how to help overwhelmed families” are what happen. The stories say that being overwhelmed makes it more acceptable to kill disabled people; the stories say that if we don’t get more services for these families, the children are at risk. And they are, but not because they deserve it or are “burdensome,” but because people buy into the fact that our “burdensome” existence can in fact justify the abuse, deaths and murders.

With every contribution to the narrative that lack of services make it acceptable, with every post that forces us to defend the dead we are trying to mourn, with every excuse thrown out to try and downplay what would be a horrific act if done to a non-disabled person, [tw: list of murdered disabled people] the disability community is put more and more at risk.

We are asking for your acceptance. We have your awareness of how “burdensome” we must be. Change the narrative into one not of awareness, but of acceptance of us as people.