Being an Unperson

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I gave a presentation a few years back at Easter Seals Central California for staff who worked there. The following video was made from the text of one of my handouts for that presentation. It addresses the extreme dehumanization experienced by people in that system, and that had probably taken place in the lives of almost all the adults served by the agency, including me.

Note that I thought people might have got sick of watching me sit around flicking my hands around, so I did most of it from a different perspective this time. Also note that the things I talk about are far more widely applicable than just the system I was describing to them at the time.

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20 responses »

  1. ‘Also note that the things I talk about are far more widely applicable than just the system I was describing to them at the time.’

    I appreciate that you made that last comment. I have experienced a good deal of what you describe in the video. I am not autistic, nor developmentally disabled. I was in an ordinary hospital situation with a serious physical illness, I was a young child at the time and I can identify with most of what you speak of. I was dehumanized, tortured with unnessecary surgery and tests, abused by medical staff in a variety of ways, including prolonged isolation, then had the abuse denied by my family who refused to believe that doctors and nurses could be so evil. It does not surprise me when you say that even friends who know you well deny your truth when you speak of what happened to you. I have met with denial, minimalization and responses like, “why can’t you just forget it?” from family, friends and even a therapist.

    Who can “just forget” being treated with less kindness than I personally would treat my dog.

  2. Yeah, and it’s not even just disabled (or temporarily ill) people who get treated like this, either, it’s… basically anyone in a dehumanizing and totalitarian situation will probably relate.

  3. Please print this comment. The other had text missing.

    Try being a well-meaning person from an “undesirable” country going to apply for a visa at a US embassy. that’s even another kind of dehumanizing and totalitarian (which i take to mean the powerless up against the powerful) situation. yeah, it’s all related, somehow.

    PS: This latest video is so visually interesting and i like how the images go with the ideas, if you think about it. although that one (rocking?) scene made me nauseous… but then so did the treatment that was being described in the text, so it works.

  4. I found it overwhelming how the background kept shifting. I prefer when it just shows you flicking your fingers or whatever, then it’s not overwhelming.
    How did the staff react when you read them this?

  5. I saw the black and white spinning thing at a planetarium when I was young. The black side heats up when near light and causes the light spindle there to spin around. A “photon” paddle if it were.

    Moving back in time here…I have to say, I got a bit dizzy at times but I had to listen through all of it. I seem to remember this in writing but visuals do add some interest. I think the spinning book at the end was most relaxing.

    So anyhow, I’ll go into unpersonhood now. I find the word person almost a ridiculous synonym. Some people like to use it in legal contexts. i.e.: at some point, slaves were considered not persons in terms of voting or 3/4ths of a person. A corporation (corpus from which it comes from meaning ‘body’) is considered a person. Corpse also comes from the same word. It’s funny that this world considers a corporation more of a person than a disabled human, a tiny human, an old human or merely a human with a body. A person is also a person in a sense at death. Their “person” is treated with respect at a funeral. To me a person is the body of a human that is treated with a certain amount of respect. A corporation is NOT a person to me but only treated as such for financial reasons in law but it’s ridiculous to me in concept. A living person or rather, living human body/being to me, is worthy of respect at every single point in life. Some philosophers are talking about monkeys as “persons”. I’d say, it’s arbitrary but I’d consider it a different “word” by historical context. I’d treat them as beings or basically the respect I have for animals like me. The tiger doesn’t really hunt other tigers (by practice). As such, I find cannibalism and mistreatment of primates an undesirable nature….although it is in “nature”. Because our minds can conceive that injury to others causes pain…we are more responsible for not doing certain ‘natural’ things. It comes down to respecting another’s free will for having life. The line is crossed when it comes to that designated as “food” of the orders of life typically assigned that to oneself and one’s peer species. Fish for example, while I eat them, are for me to eat if I choose to. Same with chicken. As a being that has awareness of pain and very base empathy, I would hope to be as humane as possible when making them my food. A cheetah is a humane killer. It severes like a guillotine would causing near instant unconsciousness. It is only because it is proficient though. Hyenas hunting zebras will bite it until it tires and falls. I’d rather be like the cheetah as one that is not purely vegetarian.

    Back to the topic since it is huge and immensely expansive and vast IMHO…I want to focus on your focus here and just say, I basically agree here and would hope others can see how arbitrary the label of person is. It is insignficant except that if so and so gets the label, you should too! So should I. So should anyone. It isn’t that only speaking beings should be granted personhood like so many zero-populationists would have us believe. We have a duty to live nature but also live our moral and sentient nature. The means is as important as an end. If one is to morally try to save environments by reducing population, it should be done humanely, by preventions and natural ways at least and optimally, natural to being emapthic humans….not by eugenecism, euthanasia, sterilization. I don’t know that as humans, being so kind is “good” but I feel it is a worthy goal above many others. It involves equal respecting of free will to all living beings in our “order” as empathic beings. People should know better but there is evil in humanity. You point at the base of it. Dehumanization, depersonalization is at the root of murder, abuse and torture not unlike Mengele’s.

  6. I love this video. Thankfully the staff at Bridges have really improved over the years and I no longer feel like an unperson, but I sure remember when I did, with them. It was awful. My mom still pretty much treats me as an unperson. It’s still horrible.

    I have to confess that the background switching and moving so fast all the time drove me a bit nuts; I had to scroll down to the comments and just listen after awhile.

    I did enjoy when you were doing things like arranging the nails and the rhombuses. I love doing things like that myself, so… yeah.

    (Didn’t know whether or not you were asking for feedback on that; I apologizr if you weren’t.)

  7. Oh, I wanted to ask… would it be okay with you if I shared this video with the staff at Bridges? I am on the human rights training committee, so I’m always on the lookout for cool new things to add to the trainings.

    (I already give the URL for Getting the Truth Out (and have heard positive comments about it from the staff, which is good, and which I’ve been meaning to tell you). Since at the time I first started giving out the URL it was still fairly ‘anonymous,’ I never did get around to asking you for permission to use it – I guess I didn’t feel I needed to. It’s a great video and sorely needed, IMO.)

  8. I found the video to be very powerful. I don’t know, if it’s because I’m Aspie, or because I just have no need to intend harm to others. I’ve never been able to understand people who treat people so negatively, and act like it’s nothing.

    I wonder what the staff person you refered to, would’ve done if you had instead claimed abuse, told her that the staff were treating you as if they were Nazis. For some reason, it seems that a perjorative statement like that is the only way some people will understand their mistreatment of others.

    I think, personally, that it isn’t that I have any issues with non-verbal Autistics. It’s that I feel awkward in, going up and just talking to them. I also don’t know if in general they’d like that, or if they’d be defensive, because of what other mean people have said/done to them. I would be interested in some advice in how to meet a non-verbal person. I mean..it’s not like I’m saying they’re less of a person, as much as it’s kind of weird socially to know their perspective about these things. Or more that I don’t really understand, because I’ve never really been involved with a non-verbal person before.

    I was inspired by your video to try and reach out to non-verbal Auties if I do see them. It’s not that really I see them as non-people, as much as I feel awkward..in general, going up to anyone and being like “What’s up?”. I’m sure this is an Aspie thing.

  9. Message from Davis Mirza
    Kudo’s ballastexistenz…the video rocks! Thanks for including the yellow subtitles…I’m currently enrolled in an Ethics and Disability philosophy course at Ryerson U, in Toronto…could I post the video in my internet discussion board as part of a group project I’m doing on contested meanings of care b/w the disabled people’s movements (who want to engage in the dominant capitalist norms of care- very masculine and domineering) vs. feminists who want to enable care-citizens who are emotional and interdependent as a carers and workers.(A majority of the caregiving is done by women.)

    The authors of the article (read below) conclude that feminists & disability activists must unite around the ethics of care – a kind of embodied interdependence that is both feminine/tactile that value touch and practices of care like emotional relationships…and that challenge the male-stream interpretation of caring as marginal, de-based work. {check out the article: Hughes, B. et al. Love’s Labours Lost? Feminism, the Disabled People’s Movement and an Ethics of Care. Sociology, April 2005, Vol. 39 Issue 2, p259-236.

    Your experiences as an un-person illustrates the extremes of care in our society…when has care made you feel like a person and would touch and emotion make a difference toward gaining dignity as a person with autism? I ask this question b/c @ the 8 minute mark of your video, the subtitile reads: “Now I am sometimes an unperson and sometimes a real person, depending on who is around me…” and magically you beautiful cat jumps up on the arm-rest to keep you company. As a animal lover and vegetarian male, I found this image profoundly moving…that a cat could offer caring without judgement…care to elaborate on our connection to other sentient creatures who care for us better than our own kind…and why that is & how this could further a ‘household of the emotions.’ I’ll check back soon re. video consent… keep in touch and keep posting your words of wisdom and resistance.
    peace~davis
    toronto, Canada

  10. Message from Davis Mirza
    …if you need the references I’ll post them as well. peace~davis

    Ethics & Disability
    Critical Response Paper:
    “Love’s Labours Lost? Feminism, the Disabled People’s Movement and an Ethic of Care.”

    PHL 507 Ethics & Disability
    Instructor: Catherine Frazee
    Submitted by: Davis Mirza
    Ryerson University Toronto, ON.
    Dated: March 19th, 2007.

    Introduction

    If ever there was a time to challenge attitudes around care – with the planet on the verge of collapse – now is that time. So it is more than opportune that a sociological analysis of care practices, Love’s labours lost?… urges two disembodied social movements, feminists and disability activists, to resist a masculinist-care approach in favour of an embodied, interdependent caring ethic. By detailing how care is structured into a feminized social space, Hughes et al appeal to both feminists and disability activists to break the phallocentric cultural bond that subordinates and marginalizes ‘the carer’ (usually women) and ‘the cared’ (disabled persons) as lives wasted.

    Love’s Labour: Disability Studies & Political Praxis

    Love’s labours lost?… timely plea for feminist and disability unity attests to a maturation of Disability Studies in the twenty-first century. Just as Women’s Studies attempts to place women in a social, political and cultural context, disability studies attempts to place disability within the same framework [Panitch 2000], allowing for an examination of how social structures shape the care experience of people with disabilities. Of note, the importance of care in people’s daily lives necessitates a political praxis that makes links between feminists and disability activists who struggle to define a common care ethic. Women and disabled persons have historical roots in resisting rationalized forms of care, particularly when male-stream care policy involuntary committed and sterilized women and ‘the insane’ (persons with mental disabilities) within State-run asylums [Wahl 1995]

    To Be or Not To Be…Colonized Bodies?

    The fact that the Disabled People’s Movement (DPM) have chosen to embrace patriarchal capitalism – with their non-disabled counterparts – to gain privileged rights as ‘worker-citizens’ illustrates the deceptive hold a rational model of care has on colonizing bodies. In attacking the binary premise of reason, psychiatric survivor and Ryerson University lecturer Richard Ingram cites “rationalism” as the guiding force of two forms of colonialism that oppress disabled persons: an internal colonialism dominates and incarcerates irrational bodies; and an external colonialism dominates other peoples also said to be ‘irrational’, by putting them into spaces of confinement. [https://my.ryerson.ca/webapps/portal/frameset.jsp?tab=courses&url=/bin/common/course.pl?course_id=_13500_1]

    By ultimately denying the DPM their paradoxical wish to break the oppressive bond between rationalized care and domination, a phallocentric culture continues to colonize and euthanize ‘irrational’ bodies as un-productive burdens upon society.
    In trying to engage the US government to be pro-active on health care reform, Troy Coelho, ‘Chairman’ of People First wrote in a letter to then President Bill Clinton in March 1993,

    “[T]he President’s Committee activated this national network on the single most important issue facing people with disabilities — health care… we will continue to focus on issues and policy in a way that will build the bridge to financial independence through employment for people with disabilities.”[http://www.empowermentzone.com/op_first.txt]

    Some advances toward disability inclusion have been gained by engaging patriarchal capitalism, but a rational caring ethos still fosters exclusion, dependence and paternalism. Tellingly, after thirteen years, social Medicare is still non-existent in America. (The indignity of having no affordable health care forces some “irrational bodies” to opt for mercy-killing as a dignified end to a life of impoverishment and isolation – why be a double burden upon society?) Does a masculinist-caring ethos prepare the ‘irrational body’ to end life sooner, in what Wolf Wolfensberger describes as the insidious hold of a societal death-making industry upon impaired people? [http://taylorandfrancis.metapress.com/content/wm4yvudxm1hj03v1/]

    What is more revealing is that by ‘selling out’ to their oppressor, the DPM reveal tell-tale signs of gender bias from within – its leadership positions are top-heavy with male administrators. [http://www.empowermentzone.com/op_first.txt] Could the DPM’s bias toward male-dominant norms of care, particularly in the US, be the wake up call for disability activists to drastically change course – why not disengage from the failure of ‘technologies of domination’ and work with feminists to reinvent the caring script?

    Enter Irigaray: “the other of the same”

    Within Love’s labours lost?… French philosopher Luce Irigaray reveals ‘the other of the same’ critique [Hughes et al 2005], wherein male and female, disabled and non-disabled in either carer and cared-for roles maintain a devalued status as ‘the other’. In a patriarchal culture founded on sacrifice, crime and war, Irigaray posits an embodied ethic of care based on feminine notions of touch and emotion – ‘otherness’ and difference become socially unifying goals. Where sight (I.e. the ‘male gaze’) privileges distance between subject and object, making true connection nearly impossible, Irigaray envisions touch as a way to bring people together – a ‘blurring of boundaries’ that may inevitably lead to the blurring of ownership. http://www.colorado.edu/English/courses/ENGL2012Klages/Irigaray.html

    Conclusion: Smothered with Care

    Using a post-feminist analysis, Love’s labours lost?… posits a beneficent care ethic where ‘cared for’ individuals are not subjected to fairly continuous surveillance by care-givers. In my place of work in a north Toronto Rehab facility, the ‘carceral’ element within caring relationships annihilates the autonomy of ‘the other’ [Bauman 1993], particularly among children with autism who are cared for by mostly female caregivers. As an Arts facilitator hosting dance and drama classes, touch and emotion are vital components toward establishing grounded relationships with my performers. Yet within many educational institutions, such relationships are frowned upon between teacher and student…confronting and isolating the ‘problematic’ child seems to be the only workable solution.

    On several occasions, I have usurped the authority of caregivers by simply holding the hand of an ‘un-cooperative’ autistic child as a calming response to a strange new environment; I have been told I am un-doing valuable rehabilitative work by rewarding the ‘bad’ behavior of an autistic child with my ‘household of feelings’ [Heller 1979] My incompatible feelings concerning care in my workplace go to the heart of Love Labour’s Lost?… conclusions, specifically, the difficulty in developing embodied, personal, and experiential caring practices in a male-stream culture where caring for disabled persons is reduced to direct payments, personal assistance and impassioned excrement. And secondly, the difficulty in bridging the ethical gap between masculine and feminine approaches to caring for disabled people.

  11. I really loved the film making in this video. The imagery and sounds that went along with the content were simply perfect. To me, it was a fully integrated experience: auditory, visual, cognitive. Perhaps I am simply in-tune with your video communication style, but I do think that you have an engaging and creative movie-making skill. I’m an Aspie, though, so I am used to thinking about communication differently. I wonder how NTs perceive it?

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  15. Amanda:

    There is a Chinese proverb that says “Persistence is wisdom.” I feel this applies to you. I have struggled all my life for a voice, for my own personal issues, as well a voice as an active advocate for my child. Because of my own experience, I know what you have to tell us is absolutely the undeniable truth. I have seen it, heard it, and been a victim of it.
    When I saw your video, it struck me as one of the most powerful testaments I have seen to the lives of people who have been silent for centuries. The daily horror people with disabilities must face is beyond the strata of human conditioning. It’s an ugly truth that festers in the midst of a culture obsessed with an illusion of “perfection”. When I saw your video, I was struck at first, with a deep sadness, but as I watched you, I felt your power, your voice. I thought, here is a person who refuses to die, no matter what the circumstances are.

    I will pass on your mirror to anyone who will look. Long live the resistance!

    Respectfully, a friend ~ Sheila

  16. Thank you for your eloquent one-line critique of “independent living” (“Being isolated from everyone in your own apartment when that is considered radical”). I have worked for ILC’s in three different states, including Atlantis Community in Denver, the birthplace of ADAPT. The hypocrisy I witnessed there was heartbreaking. In one instance, a particular client had not come in for his meds for a while, so the director of the nursing department asked the director of the housing department to write up an eviction notice to scare this man into coming to the office. Terrified by the thought of being evicted, he came in and was immediately taken down and forcibly injected right there on the floor in the middle of the office, with all the staff watching. Some were actually laughing, and the perpetrators of this criminal act congratulated each other on a job well done. It took them the rest of the day to explain to the man that he wasn’t really being evicted, and that he was free to go home.

    The independent living movement, which began as a truly revolutionary alternative, has been co-opted by the very forces which people like Ed Roberts and Wade Blank sought to liberate us from. It is now part of the same oppressive system which has controlled the lives of disabled people for the last hundred years or more. They have turned our homes into “community-based” micro-institutions.

    Thank you, Amanda, for being who you are and doing what you do. Deine leben ist vertes leben!

  17. Thank you for this video. I wish I had seen it years ago when I started working with autistic children in schools. I was barely an adult and thought I always had to bend to the ‘wisdom and knowledge’ of coworkers and bosses older and more experienced than myself. Looking back, I am horrified and filled with guilt because I can see times where I treated children as unpersons. I am so glad you speak for those who can’t / don’t speak for themselves. You said “there is no such thing as an unperson.” I now understand. Your words terrify me, because I know that even someone such as myself, who cares for and is interested in the well being of people with special needs, has been a part of this problem. They also give me hope that things can change. Caretakers, hearing your words, can take them to heart and change the way they treat those in their care. I will.

  18. Is there a transcription of this somewhere? Or is there a copy of the original pamphlet Sorry, I am having trouble reading/processing the text with the background motion (even with the audio off). This is a really important subject and I always love hearing what you have to say on things like this…

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