I don’t often write posts like this. Usually things have an activist slant. Or they’re more general. Or even when they deal with me personally, I’m writing it after I’ve already mostly figured it out and have some advice to offer. Normally I save stuff where I’ve got no clue and I’m reeling for dreamwidth (and other venues that I talk about personal things at).

But sometimes, those small, insular zones aren’t really enough. Sometimes something ridiculous happens and you have the widen the net because now you need advice, or support or just knowing someone else is going through the same thing. Because now you’re grasping and scared and you feel completely screwed. It’s one of those times for me now.

It’s been a rough week.

Some background for the uninitiated. I am a poly individual in a V shape relationship. I’m on one of the V ends. My partner (a nonbinary trans person, hence the pronoun “they”) is the V tip. The other part of the V is long distance and has been somewhat hard to contact lately (nothing I’m going into detail on or even know enough to speak on, that’s their business.) so it’s just been us two handling life lately. My partner and I, we both have disabilities in different zones. I have fairly severe Attention Deficit Disorder, steadily worsening problems with badly fallen arches, semi chronic back pain (possibly caused by this arches, the doctors, back when I could afford them were somewhat clueless on the cause of my back problems), past trauma that impacts my mental state (no clue if I have PTSD or something similar), possible Seasonal Affective Disorder (and no money for a sunlamp) and I have been getting consistently more frequent serious migraines (yanno, the kind that literally put you out of commission for 6 hours and have auras the day before that put one fairly close to out of commission). My bodily dissonance as a trans woman isn’t something I’d call a disability, but it certainly drops an extra bit of fuckery on top of the pile. My partner has a massive chronic pain thing going on (diagnosed fibro but it might be Ehlers-Danlos syndrome instead), they have schizotypal personality disorder (with the psychosis component), trigger finger, IBS (like mine), lactose intolerance and also may be dealing with something akin to PTSD (as well as migraines here and there). They’ve also got bodily dissonance that fluxes and changes. I’m not going into as much detail for them because I don’t experience things on their end and I’m not the best to talk about what they go through.

Normally, we get by. We get by pretty well. Provided we stick with the diet restrictions, usually we just switch off when one is a bit more able to get things done than the other. Chores basically go to whomever is in less pain at the time, or in less of a bad mental state or who can actually do them reliably without issue (like me defocusing and being unable to even read a recipe because I can’t keep on it). Usually even when the chronic shit we deal with is flaring the other one is just dealing with the baseline of the chronic shit for them, and the other disabilities coming up are all spread out over time.

Not this week though.

This week was the perfect storm of flare ups, semi chronic appearances and stress induced aggravations of all of the various things we deal with on a regular basis. While my partner fought off a pain flare, struggling just to walk, I was nailed with a “Richter 7″ migraine. Auras the day before so severe (nausea, nearly threw up in the supermarket, disorientation, hallucinations, shakiness and weakness) that they rivaled the loss of functionality I faced when the full tilt migraine hit (I couldn’t even operate a phone or make coherent sentences the pain was so intense) the next day, heralded by my more normal blind spots and colored swirl vision aura. The hits did not stop. Each of us got these coordinated flare ups that all happened at the absolute worst possible time that just drained us of even more of the already tiny reserves of spoons we both had left. For the first time in my life, I actually had to drag a chair into the kitchenette area to cook because I couldn’t stay standing for long enough to do anything to make a meal, before the migraine pitched me over from the pain. My partner had to clean dishes with heavy bursts of pain from trigger finger and the EDS/fibro all over because I couldn’t stop crying and shaking when I tried to do them myself (the seasonal depression has seriously wrecked me this week, I’m not sure how I’m gonna get through winter classes when they start).

And those were just the things that we dragged ourselves painfully to finish. Endurance resources ran out more often than not and shit just didn’t get done. Dishes piled high, meals were delayed as long as possible because neither of us could manage to make them and neither of us would allow the other one to put themselves through the ridiculous pain, misery and/or trial by fire to make food. Health vetos weren’t terribly useful since we were both doing so badly that the other could easily make a case to veto the first’s self sacrificial attempt to protect the second’s health and so on. The worst part of all this was how, pushing ourselves way past the point that we ever should, just cuz these things needed to get done, meant that we burned out quickly, had to rest or fell apart and then the other one would have to take up the torch and do the exact same thing. The shit cycle only really ended today (mostly, as in today was when my partner health vetoed my washing the dishes because I started crying uncontrollably in the middle of doing so) or at the least, has lowered in its fucked oscillations enough that we can both breathe a little again and maybe take some time to recover.

Things like this, where Murphy’s Law plays havoc on our lives with our disabilities, really really stresses the hell out of me. Times like this where we’re both in so much pain that neither of us have the spoons to comfort or help the other are times when the frustration with my own disabilities mounts to its highest point. I hate that someone I love is in pain and I can’t even hold them or hug them because moving makes me feel like I’m gonna throw up and that my head is in a vice, and if that blindfold falls off, light will slice into my eyes like daggers so I can’t even see them to hug them. I hate that they feel guilty and broken (similar to how I feel) due to their own pain and disabilities because I’m hurting and they hate watching me hurt when they can’t help. It’s a whole other kind of pain, different from the unrelenting headcrush of a migraine, the dull ache of depression, (presumably different from) the slashing pain of joints falling apart or the stress of not being able to walk and wondering if this flare is a sign of more permanent loss of mobility. Sitting on the chair, horrified, wondering if it was going to be a permanent fixture for cooking still doesn’t compare to watching someone I love hold me in their arms, trying to comfort me, while tears of pain are in the corners of their eyes from their own disabilities. I imagine it’s much the same for them when I try to hold back those tears of pain while holding them close.

Times like this drain me. They drain me so deeply and completely. And they are not rare. Not common but still not rare. I wish they would never happen at all. It’s hard knowing too, that a lot of people will read this post and go, “good god, that’s awful, I can’t imagine being in that situation” and being completely unable to relate. These people don’t realize or don’t grasp that this is our life. That sometimes you just want to curl in a corner and disappear because it’s so goddamn hard and you have no idea how you’re gonna get through the next hour. That sometimes you have to only think to the next task that you have to finish because if you think about how many things lie between you and getting home where you can collapse and finally rest (like a car ride, it’s terrifying hell on earth driving while in a major migraine aura), you’ll never be able to finish anything and will never get home. That sometimes you grit your teeth through the pain, wipe away the tears and do something that’ll take a few days to recover from, because someone you love would go through the same horrible thing if you didn’t do those things.

That is life for us. That’s what we deal with. Sometimes it’s as bad as this. Other times it’s easier. But through it all, especially during times like this, I really have to wonder how the hell I live through it. How anyone does. Because I know there’s other folk out there experiencing the same or worse.

Sometimes I just need someone to tell me it’ll all be okay, even when we know that it’s anything but.

Writing this is cleansing though. Letting it all out. My frustration, my stupid really wrong self loathing for not being able to handle this stuff better, how draining these perfect storms and Murphy’s Law explodefests are. I needed to get this out. Needed to tell someone, anyone that yeah, sometimes it’s all way too much and we survive by pure will, luck and just fighting for every goddamn step towards getting a break. And yeah, that’s not some unusual, abnormal tragedy. That’s life for me with disabilities in a relationship where you both have disabilities. Just needed to get it out.

I’m gonna go lay down now and try to recover a little more.

Today, in a ceremony in Vancouver Al Etmanski the Co-Founder and President of Planned Lifetime Advocacy Network (PLAN) was named as a first torchbearer for the 2010 Paralympic Torch Relay.

“For its first Paralympic Torchbearer, RBC selected Al Etmanski, an author and co-founder of Planned Lifetime Advocacy Network (PLAN), which was instrumental in advocating for the new Registered Disability Savings Plan and assists families across Canada and globally in addressing the financial and social well-being of relatives with a disability.

Graham MacLachlan, regional president, RBC, British Columbia, said: “Al Etmanski has long demonstrated his commitment to helping people with disabilities and their families succeed through his work as an advocate and social entrepreneur. RBC is proud to select him as our first Paralympic Torchbearer on this historic relay.”

To view the press release in its entirety visit: http://www.newswire.ca/en/releases/archive/November2009/27/c5788.html

To apply to be a Paralympic torchbearer visit: http://www.yougottabehere.com/

Challenges Worldwide is proud to add our message in support of International Disability Day (3^rd of December 2009).

CWW is committed to delivering and enabling improved circumstances for those with disabilities. We have partnered with and provided capacity-building support to organisations focused on empowering and supporting people with disabilities.

CWW works with a variety of partner organisations in Belize, India, Bangladesh and Sri Lanka who are committed to providing community support. Our partners are NGOs, clinics and community centres providing a range of disability services (such as for visually impaired) and mental health support services.

One such organisation is CARE-Belize, a non-profit organisation based in Belize City, committed to providing at-home therapy and education for children with disabilities from birth to seven years of age. CARE-Belize currently provides services to over one hundred children with disabilities. They provide rehabilitation services and also work in prevention and education. Many child disabilities are actually preventable and CARE-Belize is noted for running campaigns and workshops to educate health workers, teachers, parents and maternity staff on how to minimise the risk of child disabilities. They have also been aggressively trying to reach out to all persons with disabilities in their communities, through the Community Based Rehabilitation Strategy (CBR) to promote empowerment, inclusive education and intervention.

This year’s International Disability Day is celebrating the theme: “Making the MDGs inclusive: Empowerment of persons with disabilities and their communities throughout the world.” Our country partner CARE-Belize has chosen to celebrate the day by reflecting on the theme to demonstrate what they are doing within the Millennium Development Goal (MDG) context and their intentions.  Alongside looking at the ways in which the Belizean government has implemented the MDGs programs to impact the lives of persons with disabilities. They have sent a publication of their reflections to the Prime Minister of Belize and the ministries of Education, Human Development and Social Transformation, Health, Youth and Culture. They will also be organizing activities in Belize to highlight the day.

CWW wishes all our country partners and those affected by disabilities every success in the coming year!

This short excerpt from a documentary is pretty amazing. It is breath taking what the human brain can do, I particularly enjoyed the divide 13 by 97 bit, where he beats a calculator and then goes on to beat a computer.

This video make me think about what we describe as disabilities, because Daniel has Autism, but he is clearly far better at utilising the memory and logic aspects of his brain than I am. Interesting.

     Dear Hubby and I will be staying close to home.  As in, we aren’t going anywhere today.  DH will sit in his lounge chair and watch TV with Patty.  Gavin will snooze in his chair.  Yes, Gavin has his very own chair.  It’s behind my desk chair so he can be close but not trying to get on my lap while I work. 

     What will I do?  Between running the dogs out whenever they decide that they must go.  (Yes, the dogs are in charge.)  It’s a perfect day to curl up with a good book—or write one.

       I look forward to a full coffee pot and meals on paper plates so there are no dishes for me to do.

     I spent too many years in retail to consider going anywhere near a store today.  I no longer have the patience to deal with rude people, imbeciles, and screaming lunatics. 

     If we’re extremely lucky, the neighbor’s idiot kid won’t spend the afternoon gunning his car for hours on end and we’ll have a quiet day.  They rent, we’re looking forward to the day they move.  In fact, when that happens we’ll have a party to celebrate.

O Readers,

This is a letter I am writing for my own catharsis, my own release, and my own power.

I wrote it for a man who makes youtube videos. Click on his name.

I claim this story and my involvement in it as 100% my responsibility. I require nothing from you.

Please read it, if you want. Please ignore it, if you want.

Read on, knowing that I share in order to heal my self.

I also share because I believe in the absence of boundaries within my reality.

Self-compassion!

-Mohseyep-

*******

Jason,

I am writing you to give you more information about my background and episodes. This is a long story.

I will also attach links to various writings/pieces that are relevant to my story. There is a lot of story here, because I feel pretty passionate about the part of my consciousness that you represent. The healed one, and the wounded healer.

Take your time, do not feel obliged to read all or any of this, and get back to me when it feels right for you. No rush. I expect nothing from you.
Namaste,
B

I started my journey with psychiatry after an extended period of pretty intense depression. At that time, lets say beginning around January 2008, I was in a relationship that had soured, was living with my then-partner in Halifax, a city in which I had gone to university, from which most of my friends had moved on, and I was planning a year-long trip to Korea to teach English. I was working in a bike store as a mechanic after having graduated form a history of science and history double honours, highly academic BA. I was unhappy with just about everything about this situation, though I didn’t have the consciousness to know it, or the communication skills to express it. I was receiving my unhappiness as an ‘external’ manifestation, because I wasn’t taking the time or self-care-diligence to look within and really know how I was doing. This externally based sense of unhappiness stemmed from my continual research into the darkest aspects of humanity: conspiracy, corruption, war, corporatism, propaganda, powerlessness, apathy, environmental degradation, etcetera.

In September 2007, right after graduating university, I had my first LSD experience. I had moved to BC, and taken acid with two old highschool friends and one new friend, a man I now know much more about and respect totally. I knew I wanted to change my life in some way, but didn’t know how. I took the opportunity, and was connected to my divine mind, the one mind, for about 12 hours. Madness, unconditional love, total surrender, and absolute empowerment resulted. Then I woke up the next day, and continued living my life in the patterns that I had become accustomed to.

I came home from work in Halifax for about a week In April or May 2008 with no idea why I was weeping uncontrollably. I was deeply and thoroughly depressed. After some time, my partner called my parents, and they (my father is now retired, but was a family doctor for about 35 or 40 years, and my mom worked with him in his office) suggested that I go to the hospital. Thus began my relationship with hospitals and psychiatric medicine. I came to them in my most enfeebled, distraught, and desperate state, and received nothing but drugs. The environment in which I found myself was not conducive to comfort or compassion. Hospitals, in my experience, are deeply clinical and highly controlling places to be. So, after another few days, It became apparent that I could not continue at work, so it was decided either by my parents, my former lover, or myself to move with my partner back to Victoria BC, Canada, where I could live with my retired parents and recover, get some more help and have some unconditional support. Now it is obvious to me that this support was fully there from my partner. However, she needed support to love me through that time.

I began to see a shrink here in Victoria in May to July 2008. Within a few visits, I was prescribed Effexor for… obsessive compulsive disorder, and depression. There was no actual care involved. She sat well away from me, took notes, and stared at me. Her miniature dog barked at me occasionally. The role of the psychiatrist has been reduced by marketing, propaganda, and pseudo science from somewhat caring and interested in the patient’s story to the role of a human drug dispensary. Looking back at this experience now, I can see how telling my story to this psychiatrist was no more effective for my healing process than telling the full details of my story to an empty vending machine, deep in the lifeless guts of a long-abandoned underground warehouse.

My girlfriend had moved in to the house my family was sharing with another family, and these months were dreadful. The relationship was over. Everyone knew it. My ex stuck it out because I believe she still loved me deeply, even if I had moved on in my life to a new phase, new challenges. I was relieved every time I got time away from her. This was two summers ago, Beginning in the worst part of my depression around mid june and all of July. As I said, the relationships in that house were toxic: my parents to their mortgage-sharing house partner, me and my ex, everyone around us knew it. Taking effexor, I began to feel vaguely better, but not in a way that I absolutely KNEW was the answer.

I decided to move away from the city, and began to work on some farms on the gulf islands for all of August and much of September. These were deeply healing times for me. I began to have success with meditation. I had spent some of my time in the house reading online about the language of empowerment, the secret, manifestation, Wayne Dyer, and lots of the other gurus and pseudo-guru-cash-seekers. I found a CD of John Kabat-Zinns Mindfulness meditation and brought it with me to one of the islands. I began to get really excited about meditation. I built relationships with my farm hosts, and the animals, and myself. I began to feel much more human, and left a lot of the paranoia about corporate greed and governmental corruption and conspiracy behind. Or so I thought.

The relationship ended at one point, and I even helped her move away. It was a sweet relief, I think, for both of us. I still have unhealed wounds around relationship, but for now am pleasantly engaged in unattached, unconditionally loving, mindful singleness for the first time since I started pursuing long term monogamous love when I was 15 or so. I believed for a long time that young men were supposed to do that.

Upon returning to the city, I seemed much better to my family and few friends that I had found here. In early October, you may remember, we had an election in Canada. Just prior to the election day, about three or four … I can’t really remember for how long, I began to have my first genuine ‘manic’ episode. I believe that the high dose of Effexor I was on contributed much to this episode. It really is the perfect self-fulfilling prophecy: give the depressed person super-potent uppers, then crucify him for being manic later on: forcibly give him new drugs and tell him that he has a lifelong inability to manage his inner life, while the drugs repress his emotions, barring their expression and completion.

Anyway, things started to become much more meaningful. My concentration and logic abilities went way down, and my sensory experiences heightened and accelerated. I planned a lot more, and wrote down a lot more. I barely slept. I ate less, though I felt incredibly energized. I felt like through the basic meditation practice I’d been granted special powers. I no longer differentiated between words, spoken or written, from the objects they represent. No wonder the Egyptians believed names and words held total power. I felt like I could manifest just about anything, because everything that I experienced was so perfect in each moment, I couldn’t have asked for a better experience. Things that were traditionally near-meaningless became much more profound: bread crumbs, garbage, the sound of my footsteps. I felt expanded and connected, and more creative than I can ever remember.  I helped to carry out the election as some kind of officer, though I forget of what kind. I told voters where to go all day, collected sheets from pollers all day, and had the most beautiful, celebratory experience of sharing food I can every member. At one point, I’m sure the lead officer/citizen was convinced I was insane. This was fine at that point, because I knew I was creating my experience; it didn’t bother me. The paranoia hadn’t started yet, this would come the day after, in the hospital.

After getting home that night, October 14th, 2008, I began to write a blog, much of which I remember as total gibberish to me now. I deleted all of it during a sensation of shame earlier this year. At the time, the blog held the secrets of my existence, and I was broadcasting them to the world, proving once and for all that enlightenment is no more than allowing the free flow of feelings to guide our way through life, and that everyone can do it.

I burned the midnight oil all that night, and made some pretty incredible art on this computer.  I’d been impassioned about recording my experience and making art out of it for some time before. Some of the videos you can still see on my youtube channel. Look at predictive calculus, black new white, back to the middle, Mental # 1, Song No.1, All time no time, EMBARRASSMENT? The last 4 are especially significant for my experience of acute psychosis. In order to be able to see them, We first need to be youtube friends, then I will open them up to you. My name on youtube is Mohseyep – Please, feel free to add me and check them out at your leisure.

Anyway, I was up all night playing with light switches, making videos, talking to myself, burning magazines, feeling free and celebratory, excited and uninhibited, all those wonderful light feelings you describe so well online. The death of my ego, and the uninhibited expression of my inner light. Eventually, I began to feel depleted, drained of energy. I’d been burning a bright light of love within my heart for most of that day and all of the night, and I had sent out powerful vibrations to the rest of the universe, and to those people who were still paying attention. I wanted something to happen, because I couldn’t understand it with logic, the part of me that has been conditioned to expect full comprehension of everything in the universe. My ex phoned me, and I was running a bath, finally accepting the cathartic reality of my madness-freedom, and I was in no mood to talk to her. Our conversation was short, and very bitter. She almost immediately phoned my shrink, who pink-slipped me by phone with two large cops standing over me in my family home. I was taken by ambulance to the lowest security ward of the local psych hospital.

I spend two weeks there in hospital, struggling with the fear and the control and the anger, being drugged and not given a choice, let alone receiving the openness and space that I’d just given myself. I fully and joyfully resonate with your interpretation of mania as a sacred, natural, healing process that the body undergoes to heal past trauma. Because for two weeks this sacred self-healing experience was systematically and coldly repressed, I left there with a lot of unexpressed rage. I wanted nothing to do with the system, and nothing to do with the creepy doctors who saw me from time to time. I was highly motivated to get out. I’m now beginning to recognize the PROFOUND anger I can summon, if I choose to (though its not a highly productive choice, in fact its the one choice that the system needs to maintain its control over so many lives), not to mention the connection between the psychiatry industry and the systems which corporate culture, in collusion with near-completely corrupt lawmaking institutions have created in order to maintain control over the illusion of money and engender enough fear to feed our complicity. In this sense, I believe approaching mental health with a radically different approach is a deeply political spiritual act.

So, after being diagnosed with depression and OCD earlier that summer by an incompetent psychiatrist, I and my family all struggled to get me released after two weeks. In this case, I was taken off the effexor, and during my stay in hospital, I was diagnosed anew with bipolar disorder. I was put on the standard for antipsychotic medication here in BC: Olanzapine. In hospital, I gained 10 pounds on this drug. Outside hospital, I stayed on the drug for a very short period of time. At one point, I gained 8 pounds in seven days. I was absolutely infuriated by the treatment I had received in the hospital. I felt extraordinarily alone, and like no one else, especially not my parents, could understand the magnitude of my anger at being so harshly and obviously stuffed back into the repressed box society assumes to be natural. I burned the medications, and never looked back. This was one year ago, in November. This rage might connect to the choices that led me to my next episode, and it might not.

Med-free, I began to look for work. I was playing bike polo with a good community of men. I was having fun, and doing my best to manage the excitement I felt. I was writing a lot at this time, and doing a lot of release work with some recordings from www.limitlessness.com. An old friend of mine visited at this time. She is a nurse, and considering what I’d learned about energy, giving, and receiving, I became inspired. I applied to nursing school for September 2009, and began immediate work on a distance-education prerequisite course to fully qualify. I believe myself to be a wounded healer, and I thought it would be a great way to have a career and blend in, while getting lots of opportunity to hold space for people. The course started in January. It is a full-year course, and by March, I was 3/4s done it. My discipline and motivation in this period was very high. It’s no surprise, considering the direct repression of my experience that I agreed to, that I was working to get myself BACK into a hospital setting. Maybe this is conscious, maybe not. I don’t know. What I am sure of, is that I want healing.

I found a part-time job in a local tea shop, serving retirees around the end of November, in time for the Christmas season. At the restaurant I met a woman who immediately interested me. She was about 56, and had been practicing Reiki since 1984. I signed up for Reiki 1 in February, and loved it. I developed a relationship with other young members of her community.

In March, I met a whole new community, and my world began to expand at an unprecedented rate. I can give you an account of that evening here, on my blog:  http://mohseyep.wordpress.com/2009/03/09/the-burning-moment/

Health

HEALTH, EMBODIMENT AND VISUAL CULTURE: ENGAGING PUBLICS AND PEDAGOGIES

CALL FOR PROPOSALS
Conference: “Health, Embodiment, and Visual Culture: Engaging Publics and Pedagogies”

November 19-20, 2010
McMaster University
Hamilton, Ontario, Canada

Conference Co-Chairs:
Sarah Brophy, Associate Professor, Department of English and Cultural Studies, McMaster University
Janice Hladki, Associate Professor, School of the Arts, McMaster University

DEADLINE FOR SUBMISSIONS: January 15, 2010

CONFERENCE DESCRIPTION:
This interdisciplinary conference seeks to explore how visual cultural practices image and imagine unruly bodies and, in so doing, respond to Patricia Zimmermann’s call for “radical media democracies that animate contentious public spheres” (2000, p. xx). Our aim is to explore how health, disability, and the body are theorized, materialized, and politicized in forms of visual culture including photography, video art, graphic memoir, film, body art and performance, and digital media. Accordingly, we invite proposals for individual papers and roundtables that consider how contemporary visual culture makes bodies political in ways that matter for the future of democracy. Proposals may draw on fields such as: visual culture, critical theory, disability studies, health studies, science studies, autobiography studies, indigenous studies, feminisms, queer studies, and globalization/transnationalism.

CONFERENCE EVENTS:
Confirmed Keynote Speakers:
*Rebecca Belmore,* internationally recognized Anishinabekwe artist, Vancouver (exhibitions of her performance, video, installation, and sculpture include: Venice Biennale, Sydney Biennale, Brooklyn Museum of Art, Art Gallery of Ontario, Museum of Contemporary Native Arts);
*Lisa Cartwright,* Professor of Communication and Science Studies and Affiliated Faculty in Gender Studies, Department of Communication, University of California, San Diego (/Screening the Body: Tracing Medicine’s Visual Culture/; /Moral Spectatorship: Technologies of Voice and Affect in Postwar Representations of the Child/)
*Robert McRuer,* Professor and Deputy Chair, Department of English, George Washington University, Washington, DC (/Crip Theory: Cultural Signs of Queerness and Disability/; /The Queer Renaissance: Contemporary American Literature and the Reinvention of Lesbian and Gay Identities/);
*Ato Quayson,* Professor of English and Director of the Centre for Diaspora and Transnational Studies, University of Toronto (/Aesthetic Nervousness: Disability and the Crisis of Representation/; /Relocating Postcolonialism/).

The conference will also feature /Scrapes: Unruly Embodiments in Video Art,/ an exhibition curated by Sarah Brophy and Janice Hladki, at the McMaster Museum of Art.

POSSIBLE THEMATICS:

1. Technologies
– medical technologies (e.g. medical imaging, drug therapies, prosthetics and other devices) and their implications for embodiment, subjectivity, community, kinship, and politics
– corporeality and the senses as sites/forms of knowledge-making
– biopolitics and surveillance
– the relationship between “old” and “new” technologies
– how technologies mediate social spaces of embodiment and interaction
– interrogations of the human and posthuman in medicine, science, and art

2. Cultural Production
– cultural pedagogy; the production of knowledge in sites of cultural production (e.g. galleries, festivals, classrooms, online, etc.)
– counter-publics (e.g. disability culture)
– indigenous modes of cultural production
– diasporic/transnational issues and practices
– new representational modes (e.g. digital arts, graphic memoir)
– documentary practices
– “doing politics in art” (Bennett)

3. Disability
– medical, scientific, and cultural discourses of disability
– performing and witnessing embodied difference
– interrogations of impairment
– genetics, reproduction, eugenics
– dis-ease and disorder
– “ability trouble” (McRuer)
– “radical crip images” (McRuer)

4. Affect
– explorations of “ugly feelings” (Ngai), “aesthetic nervousness” (Quayson), “moral spectatorship” (Cartwright), “empathic vision” (Bennett), and “seeing for” (Bal)
– relationships to medicalization, regulation, and surveillance
– affect as generative/productive in relation to concepts of ethical spectatorship and witnessing
– relationships between corporeality and theorizations of nature as dynamic and agentic (Barad, Grosz, Haraway)
– can we/should we move beyond the theories that posit /negative/ affect as a prime site for ethics?
– affect and global politics: representations of global mobilities, violence, war, terrorism

HOW TO SUBMIT A PROPOSAL:
We kindly invite submissions from scholars, artists, health professionals, community members, and activists in all areas and disciplines. Concurrent sessions will be 90 minutes in length. Proposals for the following formats will be considered:
1) Individual papers: 15 minutes in length
2) Roundtables: 4-5 participants, including a designated moderator and a plan for facilitated discussion of ideas
All submissions will be peer-reviewed.

Individual paper submissions should include:
1) affiliation and contact information
2) a biographical note of up to 200 words
3) paper title and a 300-500 word abstract; the description of the paper’s content should be as specific as possible and indicate relevance to one or more of the conference thematics.
4) Details of audiovisual needs (e.g. DVD, LCD projection, and/or VH S). Note that participants will need to bring their own laptops.

Roundtable submissions should include:
1) affiliation and contact information for each participant
2) a biographical note of up to 200 words for each participant
3) roundtable title and a 500 word proposal. The proposal should both indicate the relevance of the roundtable to one or more of the conference thematics and outline the organization of the proposed discussion.
4) details of audiovisual needs (e.g. DVD, LCD projection, and/or VHS). Note that participants will need to bring their own laptops.

All submissions should be sent via email attachment to
viscult@mcmaster.ca <mailto:viscult@mcmaster.ca> by January 15, 2010.
Please use the subject line “Proposal for Health, Embodiment, and Visual Culture.” Attachments should be in .doc or .rtf formats.

If electronic submission is not possible, please mail or fax proposals to arrive by January 15, 2010.
Address: Sarah Brophy & Janice Hladki: Health, Embodiment, and Visual Culture Conference
c/o Department of English & Cultural Studies
Chester New Hall 321
McMaster University
1280 Main Street West
Hamilton, Ontario, L8S 4L9
Fax: 905-777-8316

ACCESSIBILITY:
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Posted here by Glenn Rikowski

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Edward Janus | Disability Advocate and Activist.
Doing Daily Internet Activism for Supporting Causes of Change. Signing Letters, Petitions, and Sharing News.

How do you handle someone who simply cannot, will not, allow a day to pass without some sort of complaint, whining or negative commentary?

I try very hard to be upbeat, to keep a positive outlook, despite the fact that I live with chronic pain and debilitating disability. Some days I don’t win the battle against my own depression, but I certainly give it my best effort.

I have a lot of friends who live with chronic pain and disability. Yes, all of us vent, rant and rave from time to time. We rage against our pain and disability, but most of us are able to find something about every day to keep us ‘moving forward’ and to be positive about. Most of us also understand that our attitude can affect not only our own outlook, but those of the people around us.

I’m all for expressing one’s feelings, for letting the bad stuff out, but really, is every day so miserable that it requires complaints, whining and groaning about something?

Overreacting, dramatizing everything and exaggerating doesn’t do anyone any good. It’s so unproductive in the greater scheme of things.

After a while, the folks who can’t seem to ever find a moment of peace, find themselves alone, avoided, distance growing between them and their ‘friends’. Friends tire of always having to reassure, lift up and boost the egos of these folks. It becomes difficult to know what to say, especially if you yourself are going through rough times or suffering in some way.

I know that, like many of my friends, keeping myself ‘up’ is a full-time job. Some days I don’t succeed. Some days we all need to just let the darkness win, but we recharge, take stock of ourselves and fight our way back into the light.

I wish folks would think about others, think about how their negativity effects others.

Please? Every person is capable of finding something good in their lives, something to appreciate, something to celebrate, rather than nothing but misery. Is it really all that hard to be positive once in a while?

*Please don’t think this is about you. I just needed to get these thoughts off my chest.

The Bill claiming to bring in the promised free home care for those with critical needs was introduced to parliament yesterday. There is a lengthy ‘impact assessment’ available at the Department of Health website that I don’t have time to trawl through before going to work this morning.

A brief perusal confirmed that the ‘critical’ needs to be included that will lead to the ‘free’ care will be restricted, understandably in light of the name of the legislation to ‘personal care’.

According to the document above, personal care includes

Physical assistance and prompting in relation to

-eating and drinking

-toileting

-washing or bathing

-dressing

-oral care

-care of skin, nails and hair

And to be eligible, as I read it anyway, there would need to be four aspects that would lie within the ‘critical’ band.

This obviously reduces the ‘access’ to the ‘free’ funding. I use inverted commas for the ‘free’ aspect as obviously there will be a payment through taxation and again, some local authorities may be attracting a higher cost than others – I am thinking perhaps of some traditional ‘retirement’ towns that perhaps might have a heavier burden on them than other districts.

The other concern about the legislation is that in an interview with The Times yesterday with Andy Burnham, the Health Secretary, who suggested that money to pay for the Personal Care at Home Bill will be diverted from funds for research into cancers and dementia.

This is hardly a popular move and one I can see the government fast back-tracking on but it goes to show how little consideration has been spent on these plans to reduce charges for homecare.

There is also to be a further focus on re-enablement and rehabilitation which, it is hoped, would reduce the ongoing care costs as it would reduce the need for interventions when more access to recovery is envisaged. This is definitely a positive outcome – I have long thought that there has been too little focus on lower level needs that progress into much higher needs if not addressed at the time. I could run off countless ‘scare’ stories about trying to arrange for some kind of rehab input when someone is discharged from hospital but they would probably not be believed. All I can say is that if it is to get better, that is no bad thing.

I still remain sceptical though. It seems like a sticking plaster to a haemorrage of a problem that noone seems to want to think through and that social care is being used as a toy to tempt voters terrified of sacrificing their childrens’ inheritance due to some kind of ‘entitlement’ to ‘things for free’ that has been created.

Whether that is the Tories and their hotchpotch policy of providing ‘insurance’ against the cost of residential care that no sensible person would take up – or the haphazard ‘free personal care for all with 4 or more critical banded needs under FACS’ that Labour are now proposing.

Personally, I can’t see the legislation being passed in the lifetime of this Parliament anyway so it is something of a moot point but if there is to be a more creative focus on re-enablement coming out of the debate, that is definitely A Good Thing.

I hope to spend a little more time reading through the proposals at length to give a slightly more cognisant appraisal over the next few days!

     When the table groans under the weight of the food on it—it must be Thanksgiving.

     When everyone (even Grandma) loosens his or her belt six notches after the meal—it must be Thanksgiving.

     When you’ve cooked for twelve hours to serve a meal that is scarfed down in mere minutes—it must be Thanksgiving.

     When the choices for dessert exceeds that of the dessert menu at the local gourmet restaurant—it must be Thanksgiving.

     When you stop and take the time to count your blessings—it must be Thanksgiving.

It was great to see a central storyline in BBC’s popular Saturday night hospital drama Casualty involving a person with Cerebral Palsy. Not only that, but a person with Cerebral Palsy who was fun loving but fallible because she drove while over the drink drive limit. I’m not celebrating the criminal offence but I am celebrating the inclusivity involved. Long may it continue.

This is a single post that turned into four (although I’m not sure when you’ll see the third and fourth). I am so, so nervous about posting this, hence the big notice at the top largely aimed at the Feministe audience. That’s because this is being cross-posted at Feministe and FWD/Forward.

Before I begin, I’d like to make a note on policing and culture. I’m going to go ahead and assume many of you are American. Please keep in mind that American experiences of race don’t apply everywhere. (What I’m particularly concerned with for the purposes of this post is that I’ve encountered a lot of sentiment to the effect that it’s more okay to question and deny the identities of lighter coloured non-white people. This is inappropriate in the Australian context, not least because of Indigenous notions of race. (Well, it would be if there was more respect paid to Indigenous notions of race.)) I can’t get more specific than that, simply because I am unaware of all the differences and issues. What I am trying to say is that sometimes I bump up against American notions of race and find myself confused, and doubtless we all feel the same encountering different cultures. So please keep the following in mind when processing this post or commenting on it: Experiences differ. Questioning an individual’s racial identity is not okay, nor their ways of negotiating it. And, you know, the same regarding one’s gender identity, or disability status, or whatever. The comments on posts in this series will be moderated accordingly.

I am a non-white person with light colouring, and I am physically disabled, but people generally can’t tell either by looking at me. My race and my disability status therefore come under the umbrella of what are known as invisible identities. These are not the only parts of me that fit into the category, but they are the ones I’ll be using to explore some of the problems with the idea of the invisible identity.

So, first up, we’ve got to ask what the phrase means. Invisible to whom? Whether an identity is invisible or not depends on who is looking.

My identities are not invisible to me. So who is doing the perceiving here? Not me, clearly. It’s not my ideas about myself that matter here. And it’s far less likely to be members of my communities observing and not realising I am one of them. So to whom are these identities invisible? The people who don’t share them. The privileged people are the ones who don’t notice my identities, who assume I am one of them, who deny me who I am. They are the ones who are noticing, the only ones with agency here. It is their perspective that gives us the term “invisible identity” and is allowed to define my experience and being.

And, of course, the person who “sees” is inevitably sighted. The whole concept of whether identities are visible or not relies on visual cues (not that those are themselves reliable). Once again, disabled people are left out of the equation; once again, privileged people are in charge of identity. As such, with regards to disability in particular, the notion of invisibility to describe the dynamic here is a fair bit problematic.

As such, the issue we’re left with is that a) other people are allowed to police and define someone’s identity and b) those people are the most privileged ones. White people have enforced a racial hierarchy, and abled people have said that these sorts of people are normal and these ones are not. And whiteness and abledness still seek to control who fits and who does not. But not everyone fits into boxes quite so neatly, and not everyone is the figure these oppressive systems imagine. But those parts of us outside the boxes are still parts of us. I think the existence of people like me acts to destabilise these rigid binaries of the okay people and the not okay people, because, between perception and actual self-definition, we are everything at once.

If you’re assuming you’re going to find white, abled people as you go about your day, you’re going to think you’ve found one in me. Being able to assume you can be in company with people like yourself is a function of privilege. I don’t get to assume that, but I do get to deal with privileged people’s ideas of what a non-white, abled person should be like. I may appear white and abled to someone, but that’s not who I am and not how I experience the world. These parts of myself are routinely rendered invisible, and I’m left to either out myself and gain a whole new set of difficulties in interacting with that particular person or group, or to be awkward and pained by being read as something I am not. And the tension between those two possibilities leads to more issues. I so often feel alone or threatened when in entirely white company and I feel embarrassed to look after my needs around abled people in a way I don’t feel around disabled people.

Because I often attempt to avoid outing myself. Being able to often pass gives me a level of privilege, and also some problems. I hope to devote a future post to that very topic; for now I want to talk about what happens when the invisibility lifts (whether because I’ve made my identity explicit, or someone else has). Once people find out about my being disabled, they often do their best to enforce that. (You poor thing! When are you going to get better! My cousin had that and got better with exercise and determination!) But possibly worse is when they don’t believe my identity, because then I get ridicule and shame and more questioning and you don’t need accommodations, darling. I don’t fit someone’s idea about what disabled people should be like, so I’m a faker and deserve suffering and scorn, lazy hopeless whiner. (Not that more obviously disabled people don’t receive similar treatment!) But whether I’m invisible or not, or whichever of these ways my identity is treated, I don’t get to control it for myself.

It is not a reflection on my identity that other people read me in particular ways; that’s their problem. I have been used to saying that I look like a white person, but the truth is that I look like me, and I am not white. So this is what a non-white person looks like, regardless of other people’s perceptions. I don’t know why someone else’s perception should be allowed to erase how other people react to my identity and – far, far more to the point – how I go through the world and what has shaped me. I don’t understand why it’s so important to have control over someone else’s identity. You cannot tell someone’s background merely by looking, and that is where racism falls apart. You cannot tell someone’s disability status merely by looking, because we have our own ideas about what constitutes disability.

Negotiating invisible identities is a strange place to be in. You’re both limited and given choices that other people are not. And, of course, the extent of the invisibility shifts depending on context (not so invisible when I’m performing cultural activities or limping) and the observer. It’s a complex game of passing, being passed, cues, policing and a struggle to be perceived as one is. It has made me less likely to assume identities of other people, and has made me more careful while going about my life. I can’t know whether being visible would be harder or easier, but I wouldn’t change who I am. I live in liminal spaces, and I have my identities, visible or otherwise.

 I started this last week sitting at Radial Café.  D and I had plans to go out for coffee that morning and as we approached the coffee shop I developed a sudden craving for my favorite “green” restaurant just a bit further down the road.  Radial shows up on my Facebook and one day they had a blurb about French toast with chocolate, strawberries and pecans.  I packed everything up and went over there to write.  And eat of course.  I had French toast again when D and I went. Not the same as before but absolutely excellent.

D was online and listening to the words that were coming out of my mouth but she was about a million miles away.  Not feeling well.  Post flu shot yuckies.  Piece of cake compared to the flu but still no fun and she had to go and landscape for a couple of hours at a client’s house.  I was busy at the time making MORE phone calls to various people about the Remicade.  When I called BCBS I spoke to Peter.  I liked Peter. Peter gave me good news.  Peter told me that I had in fact been Approved for Remicade and that was great but Peter did even better than that he helped me make it a little faster (and after all this god damn time any little bit helps) Peter informed me that if I gave him my doctor’s fax number he would fax instead of mailing the letter.  Not having the number handy I called Dr. Parris’s office and informed them that my APPROVAL letter was coming by fax, if they would so kindly give me the number, which they did.  I also encourage them to get their asses in gear and set me up an appointment right away so my first infusion could be as soon as possible. (To date I have not hear a peep out of them)

So after I had called Peter back and given him the fax number I took that piece of paper with the fax number and Peter’s name and extension on it and put it in my purse with my BCBS card.  It has been my experience that if you speak to the same people regarding your health and you find them to be even modestly good at their job and they don’t cause you to consider homicide each time you deal with them the process will be more efficient and less likely to encourage you to drink to excess and yell at the people you love most because you are so frustrated your afraid to light a burner on the stove for fear you may burst into flames.

I didn’t really have any plans for the afternoon, which I just happened to mention to Janelle at Dr. Parris’s office, as a little reminder that I am very ready to begin.  Truth is with the holiday it will likely be the week after that we begin.  We better or they are going to be on the receiving end of some really nasty calls everyday I don’t hear something. Something good.  How hard is it really to keep a girl in the loop?  Especially when she is not only checking in but doing some of the leg work to get through the process.

D has been writing quite a bit since she said goodbye while I did not give a farewell address and I have posted almost nothing.  There has been plenty going on in my head and even more going on in my days lately.

It all felt like the same things that had been going on for almost a year were running circles in my head.  I know that D has struggled with it, feeling like she was saying the same thing over and over.  In one way her issues were a thick layer of salt in my wound.  By no fault of her own. It made it hard for me be kind to her and deal with the mountain of baggage that had fallen into my lap.  After a very long tail chase I fell backward into a hole and have been thinking and planning on how to get out of the hole, sometimes I scratch and claw at it trying to get out.  Other times I yell and scream at the hole, taking a bit of the responsibility for being in the hole but mostly blaming the hole for being there.  My lessons revolve around all the feelings that have come in giant freight car quantities with the diagnosis and actual symptoms of Ankylosing Spondolytis.  After three TNF blockers nothing has been very affective at halting the inflammation that causes pain so intense and constant that when it abates I feel strange and unbalanced.  But that doesn’t happen often.  The inflammation is in there building tiny inroads, laying the foundations to bring my joins closer.  That would be nice if we were talking about my group of friends but we are not we are talking about my vertebra that are every minute closer to being fused to the neighbor vertebra, on each side.  They have put aside their differences and are willing to make the commitment for life.  My life as it turns out.

I spent about 15 years with a chronic disease before AS.  Lupus, while early on no one had really heard about it or knew anything about it more people seem to have an understanding of it these days and therefore acceptance.  In other words they don’t think of Lupus in the same way as Cinderella’s evil step mother, a total bitch but not real so in the end not a big deal.  The course of my SLE has not been that bad.  Once we figured out the vascular stuff everything else was pretty easy.  My AS is not like that. And we are back to no one having heard of it which makes it harder I think for them to grasp the meaning of having such a disease.  Unlike the path of Lupus (SLE) in my life I would characterize my course of AS with  words that would include   rapid, aggressive, and unresponsive to treatment and none of those are the things you want in a disease.  Crippling.  Painful.  Not way up there on my list of things I’d like to do, actually it rather gets in the way of what I want to do.

In the hand written version of this story (while at Radial there was no plug near us so I wrote in my journal) I rant about doctors and insurance companies but that is certainly nothing new so I am skipping it and moving forward.  Well so I was looking for the part where I wanted to jump back in and there is a rant about meds—and adult beverages.  Last week we returned to the neurologist for the follow up (read: pointless waste of my time, but time he gets paid for, so he asked me to come again- in 6 months.  Yeah, right) and he made several comments about changing my meds.  Uummm, let me think about that for a minute, no.  Dr. Parris, the rheumatologist that has studied these diseases and me for over 15 years works with me to keep the correct balance; you do no have permission to FUCK with the meds.  He also suggested I remove caffeine from my diet reminding me that most teas and sodas have caffeine not just coffee.  OMG, they do?  I HAD NO IDEA.   Maybe it just slipped his mind that I know how to read, I can even read those funny rectangles on food and beverages called Labels.  Shocking, I know.  There have been times when I gave up caffeine which my meds don’t really mention, alcohol on the other hand is mentioned on all sorts of little rectangles right on the pill bottles.  They even come in lovely colors such as neon yellow and electric blue and they strongly advise you not consume adult beverages of any kind while taking that medicine.  Well for me, that’s forever.  Now I have given up much and lost even more because of the damn diseases I take these meds for so while I am here and able to consume liquids some of them are going to contain alcohol.  And caffine.

With all the aimlessness and standard issue crap that I have been working on making peace with I slipped, tripped over my bad attitude and landed in my own private pity party where I stayed for a while.  There were no guests, except D every so often.  She mentioned to me that I needed to talk to someone other than her about it.  I was talking to other people they just don’t get it the way she does.  Well Steph does but her father-in-law is in a persistent vegetative state and her mom is dying from a very aggressive form of Alzheimer’s so she has her own party on occasion. It’s fine as long as you don’t stay there.  That is a terrible place to be stuck and I was feeling uncertain as to how to dislodge my self from the endless circles pain, frustration, helplessness, anger, if you have read more than a few posts you know the cycle.  Or maybe you have your own cycle.

Little more than a week ago I went over to a friend’s house to meet her daughter.  Bella had just moved back from Florida and was getting settled in.  Stella, her mom who is my friend had been anxious about having her come.  Stella had arranged a short leave of absence until they could settle into a routine.  I had been hearing bits and pieces of the story for months.  Bella was in an auto accident about two years ago and it left her a quadriplegic.   Stella asked me if I could come over and sit with her a few hours a day three days per week.  The day I went over and met Bella so that I could become familiar with what would need to be done, the wheels began to turn.  I am not pitying her, she is a fiery one, I was inspired and comforted by her presence.  I don’t do much some days, some times we sleep, but often we talk.  She made it through what most people would consider their worst nightmare and has not lost her spirit along the way.  I think we have both found not only a companion in the health care giver- patient sort of way but something more than that.  We have found a friend.