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!

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

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.

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