Unpublished Letter to the Editor of the New York Times Regarding Op-Ed "The Modern Asylum"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

Sincerely,

Kit Mead

Disability Advocate

1http://www.disabilityrightswa.org/deinstitutionalization-what-research-shows

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)

3 http://www.disabilityrightswa.org/deinstitutionalization-what-research-shows

4  Maureen Crossmaker, “Behind Locked Doors – Institutional Sexual Abuse,” Sexuality and Disability 9, no 3, (1991) 201-219

http://www.ncea.aoa.gov/Resources/Publication/docs/NCEA_LTCF_ResearchBrief_2013.pdf

The social model and when society refuses to admit its part

[Also on Tumblr]

I’m going to reiterate the social model and what this blog advocates for and what I advocate for. It has been said before. I will say it again. For the sake of this post, “society” will stand as the general conception  non-disabled people have of disability – or what they don’t think about in terms of disability.

In a society which disables us and refuses to admit they do so, it is not that we are not fighting hard enough for our rights, for our equity, that our demands are not strong enough – it is that society views disability itself as a malfunction of the human body or brain. It is a strong cultural bias and line of thought that has been around since there were cultures, and, though accentuated and perpetuated greatly by capitalism, is not solely a byproduct of capitalism. If capitalism ceased to exist, ableism would still exist. And there is no perfect world in which we can trust a government and economic system to fully benefit us.

In a society that would rather fix the individual who is not broken (i.e. all the money spent researching cures for autism and prenatal testing research) than spend a bit of extra effort to make things accessible and provide supports (like using alternative communication devices to spread the person’s word, ramps in the front of buildings rather than relegating wheelchair users to the back), we must continue to exist as an act of defiance.

Society does not consider the extra effort the person they are disabling has to put in to get someplace, do something, and perhaps, they are not able to get to where they are going from the failure to provide any meaningful supports or make it accessible, but protests the moment any disabled person brings it up (i.e. academic conferences sometimes both physically lacking accessibility for anyone with a mobility-based physical disability, and language barriers – this can be the classroom, too. Academic jargon is essentially shutting many disabled people out of conversations).

Society protests about the effort they would have to put in.

This is the social model of disability: we can have impairments or different ways of doing things, and society disables us by not allowing us the tools to complete tasks (and by not allowing us the right to human dignity at times).

Society has a lot to work for. 

(While we fight for those rights, please keep in mind that not everyone will be immediately receptive to the idea that they are part of a cultural bias. Please work with them to the extent you can.)

Other Autistic People Taught Me What Autism Means (Video)

Oh look a video.

Transcript, though captioned (fairly) accurately:

Rough transcript, captions should be listed at some point on the video.  I wrote in my own and it’s setting the timings?

This is an address to parents and people who care for and assist autistic people.

I have been feeling *more* autistic lately, if that makes sense – just using echoes more, realizing scripts more, thinking about things I do. I mean, I flapped at a cat for five minutes the other day.

To other Autistic people…

I stim more, I am more open… and I that’s because I follow so many people on Tumblr and talk on Facebook a lot with people.

Being around other Autistic people is important.

Being around other Autistic people lets you know you can do things with them and also on your own, when situations permit. It gives you almost an internal permission to let go. When I started the k-pagination blog, I was like “Will only write activism posts and reblog activism posts. Serious stuff.” And now it’s just… I need the joy of being Autistic. I will write posts that might seem a bit silly. I will start tagging with the echoes I always had in my head and never used.

Being around other Autistic people is important.

If you’re a parent or caregiver, reading this, let your autistic kids and adults (if you have legal guardianship or something), be around other Autistic people. Don’t isolate them from neurodivergence. That in of itself can be as harmful as a physical seclusion room.

This is not my usual, long and flowing eloquent and bit detached activism. This is an autistic person asking for people to respect lived experiences. I was like your child.

I climbed trees, I ran around shrieking and screaming all the time, and even if I did now, it wouldn’t make me less than. I did a lot of things in those alarmist documentaries. I am worthy of dignity and autonomy. So are your kids and relatives, whether nonspeaking or speaking or need aides and what level of supports they need.

And other Autistic people are the ones who taught me self advocacy and activism. It was just a label before I met Autistic people I talk to and call friends and acquaintances and respect. Though psychiatrists and psychologists can be useful, other Autistic people taught me what autism means, not them.

And to Autistic people watching this, you have the right to be around other Autistic people and talk and share your experiences, and have validation.

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.

Dressing While Disabled (And Agender)

#DressingWhileDisabled (And Agender)

**

I hop. And fall into a chair. My dyspraxia is not good for full body movements in contained areas. I try to tug on the socks. I have to go sit on my bed.

**

I have weak ankles, and I don't want to try wearing heels, I say.

Fair enough, the friend responds.

I do have weak ankles. I sprained each one twice before I was 12 years old, running around and climbing things like the autistic kids you see in the alarmist documentaries (well, because I'm autistic. I did things like that. Unsurprisingly, I was like a lot of the autistic kids you see in the alarmist documentaries or the parents insisting us activists are too high functioning to understand).

But I also don't say: I don't think I could balance. I think I'd fall. I'd embarrass myself.

**

Recently, I've undone enough of my internalized fear of dressing nicely or fashionably-ish because that's how the people who bullied me in middle school and high school dressed like, and also undone the notion that to be nonbinary and agender, you can't wear gendered clothes.

I used to say that, as I walked around in “guy” jeans.

I tried on a dress in Target yesterday, because it felt sensory friendly and floaty. I realized this after wearing a nightshirt for the first time.

**

But I lack the executive functioning to remember how to fashion myself appropriately. I fall down over my shoelaces because I lack the coordination to tie them effectively, or forget to even try. I cannot remember to go buy the clothes. It took an entire winter to realize I didn't have enough long pants, and that's why I needed to do laundry so often.

Which, by the way, is hard. Laundry is hard.

I emailed my mother. I need sweatpants. Can you take me to Target?

We went to Target and bought sweatpants.

**

Sometimes, it's not an Autistic thing. I have anxiety and various mood things. It can be hard to roll out of bed and put on clothes effectively, or brush my hair, or tie my shoes, as I bump into a chair and swear groggily.

**

I am Autistic, and dressing while disabled can involve so many steps I forget to do all of them.

I don't mind, to be honest.