Friday, February 27, 2015

Unpublished Letter to the Editor of the New York Times Regarding Op-Ed "The Modern Asylum"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


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


Thursday, February 12, 2015

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.)

Sunday, February 8, 2015

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.

Sunday, February 1, 2015

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.


Tuesday, December 23, 2014

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.

Friday, December 12, 2014

Response to Tumblr Ask on 9-12-14

http://k-pagination.tumblr.com/post/102451828204/do-you-oppose-research-for-cure-for-autism-or-do


Do you oppose research for cure for autism? Or do you prefer to see kids being dysfunctional and unable to communicate?

— Asked by Anonymous

What is, exactly, your idea of functional? “Functioning” is a very, very arbitrary word that has been used to dehumanize us (and other disabled people) since its creation. Is this a quality of life judgment, where you’re going to tell us how much we suffer and that our lives must not be worth living if we’re Autistic, so cure us?

What is, exactly, your idea of communication? Because verbal speech is too emphasized in this society. It’s not the only way. Behavior is communication. I know people who have entire conversations without talking or typing.

Do you support the idea of curing children who haven’t had a chance to even figure out what their neurology even is, who may not have had a chance to escape the toxicity of the world around them that tells them their neurology is wrong to the point where they don’t know how to think otherwise?

Do you oppose the voices of Autistic people (those of us who talk with spoken words, those of us who don’t, the ones you say who wouldn’t be able to communicate, but are communicating right in front of you, via typing, text to speech, AAC, and behavior)?

Your ask is incredibly dehumanizing. Real question: Do you oppose us being humanized?

(Short answer: Yes, I oppose cure research.)