Category Archives: identity

“We’re not his kids, we’re adults, and we’re our own people”: The Trouble with the Jerry Lewis Telethon

6 September, 2010activism, autonomy, bodies, disability activism, events, history, i'm right here, identity, invisibility, media and pop culture, news, politics, social attitudes, televisionAnna

Today is Labour Day in Canada and the US, which for many people means the end of the Labour Day Weekend Jerry Lewis Telethon. Wikipedia conveniently describes the Jerry Lewis Telethon so I don’t have to:

The Jerry Lewis MDA Telethon (also known as The Jerry Lewis MDA Labor Day Telethon and The Jerry Lewis Stars Across America MDA Labor Day Telethon) is hosted by actor and comedian, Jerry Lewis to raise money for the Muscular Dystrophy Association (MDA). It has been held annually since 1966. As of 2009, the telethon had raised $2.45 billion since its inception. It is held on Labor Day weekend, starting on the Sunday evening preceding Labor Day and continuing until late Monday afternoon, syndicated to approximately 190 television stations throughout the United States.

On the surface this probably looks like a good thing, but digging a bit deeper: For many people, this is one of the few times they’ll see images of people with disabilities on their t.v. screen (and from a noted authority and beloved celebrity), and the entire thing is one drawn out pity parade.

Since 1991, protesters, including Laura Hershey and Mike Irvine, have tried to raise awareness about the way that the Jerry Lewis Telethon, and Jerry Lewis himself, treat actual adults with disability, and have discussed how these sorts of pity parades affect the public perceptions of people with disability. In 2001, Hershey wrote:

As we in the disability-rights movement keep trying to explain, our biggest problems come not from our physical conditions, but from a society that fails to accommodate us. Lewis’s telethon plays up the problems, without suggesting their sources or solutions. For instance, those sappy vignettes will make much of an “afflicted” person’s inability to wash his own hair, or get herself to the toilet, without any discussion of the urgent need for publicly funded personal assistance, or of the problems posed by the architectural barriers designed right into the layout of most private homes.
Trouble also arises from the fact that thousands of families dealing with disabilities in the U.S. and Canada are denied adequate medical care and equipment – necessities which should be basic human rights, not handouts accompanied by a drum roll and tally.

I’ve written about my disdain for both the Telethon and for the praises Lewis gets despite referring to people with disabilities as “half-persons” who should “stay at home”, and I think this is still an idea that people find very challenging. It’s easier to view these sorts of fund raising telethons as doing Good Things. They are supposed to, after all. That it’s still leaving people with disabilities begging for basic rights, access, and assistance that shouldn’t be necessary in this age of the Americans with Disabilities Act (ADA) and Accessibility for Ontarioans with Disabilities Act (AOWD) isn’t comfortable to think about. That the main use of these funds is for finding a “cure” – by which they mean a pre-natal test – rather than assisting families in purchasing wheelchairs or renovating a home to make it wheelchair accessible, or in assisting people with disabilities in getting support during or immediately after a move seems to surprise people. Your money isn’t going to help actual people with disabilities. It’s going to help the Muscular Dystrophy Association, and to aid Jerry Lewis in his continued insistence that he’s a humanitarian. These are not really the same things.

Many people with disabilities have written about their perceptions of these telethons, and the damage they do, as well as the issues with giving a humanitarian award to a man who treats actual people with disabilities with such disdain. Hershey’s most recent columns are Speaking Out against the MDA Telethon and Laura’s Labor Day Weekend Column. Liz Henry wrote last year about her dose of morning rage regarding the telethon, and there are many links there that highlight the issues around Jerry’s Kids. There’s also the 2007 Blogswarm, Protest Pity, which features more than 35 blog posts about the Telethon and the Protests. You can also read From Poster Child to Protester, which may be the first thing I ever read about the protests and the Issues with Jerry Lewis.

Sometimes, though, the best way to combat the pity parade is to show people with disabilities talking about their lives, and their lived experience. Laura Hershey made this video as part of the “It’s Our Story” Project. Transcript follows:

Transcript:

The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.

Signal Boost: Submissions Requested for the September Disability Blog Carnival

29 August, 2010disability activism, Event Roundups, identity, intersectionality, signal boostblog carnival, disability blog carnival, identity, intersectionalityOuyang Dan

Astrid, of Astrid’s Journal, has agreed after much consideration to host the September edition of the Disability Blog Carnival, and we at FWD/Forward are enthusiastic to support that decision!

Astrid has chosen the theme “Identity”:

Think of it as broadly as you want. Posts relating to transforming identities, are of course especially welcome, as they honor both themes. Just a reminder that, even though this is a disability blog carnival, we honor intersectionality, so racial, ethnic, gender, sexual and any other type of identities also count, as long as the post is somewhat relevant to disability.

Comments can be submitted preferably here or else at the Disability Studies, Temple U. blog. The deadline for submissions will be Tuesday night, September 21 – Tuesday night your time, so don’t worry about my living in Europe. I hope to post the carnival on Friday, September 24 – whenever it suits me, my time.

We hope you will consider submitting something for the Carnival. Remember, the theme is a way to get you started, and we hope that you will interpret it to how it applies to your own situation, keeping the general spirit of intersectionality in mind.

Again, thanks to Astrid for taking this on, because without volunteers, there would be no Carnival!

Be sure, if you haven’t already, to check out the August edition of The Disability Carnival at Brilliant Mind, Broken Body, hosted by Kali.

An open letter to non-disabled people who use disabled parking spaces

26 August, 2010101, accessibility, class issues, i'm right here, identity, invisibility, policy, politicsableism, accessibility, accessible parking, conceptions of disability, disabilityfail, disabled parking, fail, it's about you, legislation, parking permit, problematic attitudes, TAB, things people say, transit, transportation, wtfAnnaham

Dear abled/non-disabled people without disabled parking placards who use disabled parking spaces anyway,

I don’t care if you want to use the space “because it’s so convenient.”

I don’t care if you only “need” to use the space “just for a minute.”

I especially don’t care if you back up your illegal use of said disabled parking space with some bizarre justification like, “But some people FAKE being disabled to get these permits, so what’s the difference?” or “Well, if a person in a car with a blue placard shows up, I’ll move” or “But there isn’t anyone disabled who needs to use the space here right now, so what’s the harm?”

The harm is that I or other disabled people are so often witnesses to your saying these things, and we are presumably expected to not react at all to your taking advantage of something that is not for you. I personally do not own a motor vehicle, so while I don’t need a disabled parking permit, I also don’t need your entitlement complex and your basically telling me — a person with disabilities — that some of the regulations intended to benefit me and people like me are rules that can be bent by you if it’s the most convenient option for you, an able(d) person.

Just don’t do it. It’s illegal and carries penalty of a possible fine for a reason.

This sort of legislation? Is not intended to benefit you, or be a convenient thing that you can take advantage of when you feel like it. Most of the world is already set up for you. These “convenient” parking spaces don’t have to be set up for your use, too.

Working Towards the Neutral Place

16 August, 2010autonomy, bodies, identity, languages.e. smith

Something that I see coming up a lot in discussions about language is the argument that, by asking people to refrain from using words that refer to disability as pejoratives because they reinforce the idea that disability is categorically bad, people engaging in discussions about language are saying that disability is a bed of roses with a unicorn and a platter of cupcakes on the side. This is, as I said in a recent ‘Today in Journalism,’ so not true, and I wanted to pull that discussion out of that post, because it’s important, and it deserves its own post:

The thing about terms like ‘suffers from’ and ‘victim of’ is that if someone self identifies with them, that’s fine. But when they get used as generic terms to refer to people with disabilities in general, it sets a precedent. It tells people that disability is suffering, and that people with disabilities are victims. The reason that we ask people to use neutral language when talking about disability is not because we want to tell other people how to feel about their disabilities, but because we don’t want to tell nondisabled people to think negatively about disability.

This is an important thing, when talking about language. There’s a big difference between identifying with a term and using it, and using a term in general to refer to everyone like you, or, in the case of nondisabled people, using a term you’ve heard someone use as self identification to refer to everyone like that person. If the media presented disability in neutral terms, ‘The locals known Ray Magallan, a man with cerebral palsy who…,’ it allows readers to approach the article with neutrality. But here, from the very start, the subject of the article is a victim.

Asking people to think about the language they use generally is not about telling people that all disabilities are awesome! And terrific! And superfun! Nor is it about telling people how they should feel about their disabilities. What it’s about is working towards the neutral place: The place where disability in general is value neutral, rather than universally good or bad.

Speaking for myself and myself only, there are some things about my disabilities that I like, and that I am glad to have as part of my identity. There are other things about my disabilities that I dislike, and strongly wish would Go Away. And there are a lot of things that just are, that I don’t feel strongly about one way or the other. I don’t like society assigning values to my identities, or deciding that because I feel a particular way about a specific disability, all people who share that disability must feel like I do; I want society to view them neutrally, and that’s one of the reasons that I want to get people thinking about the language they use and how they use it.

The language isn’t the problem. It’s the underlying attitudes that are the problem. Disability is used as a shorthand for ‘bad’ because it is understood to be bad. The goal here is not to try and effect a switch, to disability as ‘good,’ but to get people to view it neutrally, and to allow individual people with disabled identities to shape their own approach to disability. To give people autonomy, and to make nondisabled people understand that when one person says ‘I hate my disabilities’ that person is speaking for ouself, just as the person who says ‘I love my disabilities’ is also speaking for ouself.

It’s also, of course, about getting people to confront the role of ableism in their lives, and to look at how it manifests, but that’s only one facet of conversations about language. People who are stuck on ‘oh, I need to just not use these words’ are missing the much larger discussion, that these words are code for attitudes and beliefs, and that when we talk about these words, we confront those beliefs. By working towards disability as neutral, we are allowing many people with disabilities self determination and autonomy, although not all people with disabilities will necessarily agree that working towards the neutral place is a shared goal, or even something that should happen at all.

Telling a person with disabilities who identifies ou personal experience as difficult, or painful, or unpleasant, or frustrating, or simply bad: ‘how can you say disability is bad!’ is every bit as policing as calling disability in general a tragedy, because it’s denying someone’s lived experience, and it’s denying something that someone is articulating right in front of you. Someone who hates ou disabilities or who hates aspects of them isn’t ‘betraying the movement’ or ‘wrong,’ and the goal of language discussions isn’t to hound people who feel that way into changing their minds about how they feel about their bodies and brains.

It’s about creating a space for everyone, a space where people can self identify how they like, and feel the way they like, without being judged or shamed not just by society, but also by fellow people with disabilities. There is room for all identities and lines of thought in a world where disability is a neutral identity, and people are allowed to shape it and feel about it the way they want to, rather than being pressured to perform, think, and believe in a particular way for the benefit of others.

Just

7 August, 2010blaming, bodies, identitycerebral palsy, fibromyalgia, just world theory, personal, personal storiesAnnaham

My beginning is like this: I was born a full three months before my expected arrival.

I apparently couldn’t wait the whole nine months to come into the world. This early arrival was rife with complications, however: a brain hemorrhage, one collapsed lung (I still have under-armpit scars from the surgery), and, the kicker — cerebral palsy as a result of premature birth. After they found the hemorrhage, the doctors did not expect me to survive.

The hemorrhage stopped on its own. No one could figure out why.

I was in the ICU for a long time after that — in a special plastic case to protect all three pounds of me from hospital elements.

My early birth was unexpected, as was my survival of the mysterious hemorrhage. Both of these things happened for no particular reason.

There are a lot of people who seem to subscribe to the “just-world” theory of events — that is, anyone who has anything bad happen to them has done something to “deserve” it. One sees this attitude thrown around quite a bit in relation to disability and illness — for the smoker who gets lung cancer, for some people who become severely disabled due to accidents, for the “angry” or “repressed” person who is diagnosed with a deadly illness. One sees it in so-called New Age “theories” of illness — that illness is a physical manifestation of bad karma or some other buzz-word often appropriated from a non-Western belief system.

But what of those who are “born this way”? What could they possibly have done in their “past lives” to have disability and/or illness be a feature of their current life? Could I have been, for example, a dictator or Bathory-esque ruler in a past life? I am not one for metaphysics, so I am inclined to think that the answer is no. Besides, were there definitive proof of past lives, it’s not as if every single New Age person could have been a saint in his/her/zie’s past life. So when these folks try to utilize my CP, or my depression, or my fibromyalgia as “proof” that I am or was a bad person and they are good people who inhabit a world of unicorns pooping glitter or somesuch, I tend to get a little upset and/or snarky at their pushing pseudo-enlightened rationales as making any sort of sense.

Disability is not proof of a “just world.” It is not a punishment, nor a tragedy for those of us who live with all sorts of disabilities, or whatever dichotomous thing that various social and cultural attitudes have constructed it as. It is one facet of human experience.

For many of us, disability just exists, or just happens. And for whatever reason, this terrifies many currently-abled people.

Guest Post From Jesse the K: 20 Years and a Day for the Americans with Disabilities Act

30 July, 2010accessibility, activism, guest post, identity, introspective, life changesableism, advocacy, assistive technology, human rights, impairment, legalities, memoir, wheelchairGuest

Jesse the K hopes you can take a disabled feminist to tea this month.

I’d hoped to have a delicious thinky post about the difference 20 years of the Americans with Disabilities Act has made for the world, the nation, the state, and me. Meditating on those topics proved so depressing I didn’t even leave the house yesterday. Ha! Depression is the gift that keeps on stepping on my toes.

So: the ADA and what it enabled today. In my zippity, comfortable power chair I zoomed to a “regular” bus stop and thence to my accessible health club where I swam for 40 minutes. I used half of the seated showers (what the staff insist on calling the “handicapped stalls.”) Most of the people I encountered treated me respectfully and without patronizing me. I saw at least 10 other people whose impairments were readily evident to me. Another bus to the next stop. I had no worries about crossing a six-lane 45mph road because my chair goes fast enough (but not, alas 45mph). There were curb ramps which almost met ADA specs almost all the places there should have been — the speedy chair simplifies crossing the street via driveways when necessary. I stopped in three stores during these errands. At one store the counterperson dramatically jumped back and performed the Vanna White maneuver to demonstrate that there was room to move in the shop. (Oh really?) The other stores gave me exactly the same attention as the evidently enabled* people who entered at the same time.

OK, that’s all about assistive technology, and there’s more AT-related items I could enumerate (built-in enlarging features in apps and OS simplify computer use; cordless phones; I’m stopping now).

The biggest change has not been in my body but in my perspective. In the late 80s, I’d been educating myself on social-model, disability-rights reading, but my impairments were not yet evident to others. That disabled people’s rights had been enshrined in law was hugely important to me. That the ADA used “mental illness” as an example finally tipped me into considering therapy.

So, thanks for my life, ADA: many mundane things, and a few great big ones.

The law is not enough; as Cal Montgomery taught me:

Discrimination is always illegal; only activism makes it unwise.

So thanks to these real-world colleagues and teachers, who enabled me to learn advocacy:

Caryn Navy, who was infinitely patient with my AB privilege, remade a corner of the world at Raised Dot Computing, and demonstrated dignity through snark
Chris Kingslow, who taught me that mental illness isn’t the end of the world
Catherine Odette, who published Dykes Disabilities & Stuff, founded Able Lives Theater, and gave me permission to take as long as it takes
Cal Montgomery, who decoded the disability studies stuff I couldn’t follow, made me laugh, and taught me that there is dignity in “behavior management,” as well as potential for abuse
Mike O’Connor, who held my hand while I took my first steps into the public square
Fayth Kail, who cranked open many minds as she served as an Assembly page in the state legislature while also campaigning for abortion rights, reminding me that advocacy has a life cycle

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Celebrating Us: Notes for an address at the 7th Annual Simply People Celebration

28 July, 2010activism, autonomy, disability activism, identity, policy, politics, resistanceAnna

John Rae is a disability rights activist in Toronto, Ontario, Canada, and a member of The Alliance for Equality of Blind Canadians. This speech was delivered by Rae on July 20, 2010 as part of the Simple People celebration, which is in turn part of Toronto’s Disability Pride.

Tonight is for us, and about us! Tonight is a time for us to celebrate our accomplishments and to redouble our efforts to bring about true equality for all persons with disabilities in Canada and around the world.

This year, Canadians with disabilities are celebrating Canada’s ratification of the UN Convention on the Rights of Persons With Disabilities (CRPD). While it may not provide us with a lot of new rights, it sets out in far greater detail than any human rights code or the Charter of Rights and Freedoms ever did what a truly accessible and inclusive Canada can look like, in important areas of life that are critical to our participation in the economic, political and social life of our communities – transportation, employment, education, communications, access to information, etc. The Convention also requires Canada to collect and disseminate data and to submit a comprehensive report to the Secretary-General of the United Nations within two years after ratification and every four years thereafter on measures taken, and civil society is to be directly involved in the development of these reports. This means involving us!

The development of this Convention traveled a unique path. It took the least amount of time of any UN Convention to be concluded, and it involved far more participation from civil society than ever before. That means involvement by us, and many groups representing persons with disabilities participated actively in the negotiations at the UN that resulted in this Convention. There are important lessons to be learned from having this kind of direct participation in developing any new initiative that directly affects our lives.

Last year, the President of the Alliance for Equality of Blind Canadians, Robin East, developed a new way of addressing our needs and aspirations. He coined the new phrase, “rights holders.” We are Rights Holders! What does he mean?

Too often, governments like to lump all of us, consumers, parents, service providers, etc. under the same umbrella of “stakeholders,” and while all of these groups may very well have a “stake” in the outcome of a new piece of legislation, policy or program, we are the ones most affected. We are different, and must see ourselves as “rights holders,” and not just another group of mere stakeholders. What this means is that we must occupy the primary and preeminent place at any table that is discussing anything that directly impacts our quality of life.

You are all familiar with the favourite phrase of the disability rights movement, “Nothing about us without us!” Now that Canada has ratified the UN Convention, it is critical that we rights holders participate as directly in its implementation as we did in its design, to ensure that it makes a tangible difference in the lives of all Canadians with disabilities, to make it become Canada’s national disabilities Act.

By contrast, the much heralded Accessibility for Ontarians With Disabilities Act (AODA) continues to move at a snail’s pace. After over five years, only one of the initial five accessibility standards has been issued as a regulation, though more are expected later this year. It is hard to imagine that Ontario is even close to being on track to achieve full accessibility by the far off date of 2025, and it is hoped that Canada’s ratification of the UN Convention will spur some renewed commitment and action to the AODA.

It is too often argued by representatives from governments and the obligated sectors that they “would like to do the things we wand and need, but these changes will simply cost too much.” We have countered that the real barriers are not cost, but a lack of political will and a question of priorities.

The Ontario Human Rights Code has covered persons with various disabilities since 1982. Governments, the public and private sectors have had over 25 years to make their premises, websites, products and programs fully accessible. How much more time do they need? If they have ignored their responsibilities and dragged their feet over all these years, stop blaming us – stop blaming the victims. It’s simply not our fault.

After the preposterous expenditure of an estimated $1.3 billion (that’s billion) on security for the G-8 and G-20 Summits, and countless millions of dollars on our involvement in the war in Afghanistan, persons with disabilities never want to hear the cost excuse ever again … never again! Resources are not unlimited, but whenever a government really wants to do something, it seems to magically find a way to finance its priorities.

So what am I asking you to do?

1. Write letters to the Editor of your local newspaper, raising disability issues;

2. Ask all candidates for Mayor and Council in the upcoming municipal election about their platforms, and what they commit to do to advance our agenda;

3. Get more involved in the disability rights movement. Join a group like the Alliance for Equality of Blind Canadians (AEBC), Citizens With Disabilities Ontario (CDWO) and sign up to receive updates from the Accessibility for Ontarians With Disabilities Act alliance, or find the consumer organization in your area that best represents your issues and ideas.

In closing, I want to mention just one more point. Many of us who have been on the front lines, in the leadership of our movement for many, many years are getting old and growing tired. We need you to get more involved. We need your energy, skills and new ideas. We cannot expect the system to hand us our rightful place, our history teaches us that it rarely does! Moving our agenda and achieving our goals is up to us. We must make it happen.

Some of you will be familiar with the phrase “Full Participation and Equality.” It’s an excellent phrase. It’s not a new phrase. It was the theme of the International Year of the Disabled Person (IYDP) way back in 1981.

Since then, we have come a part of the way up this road, but we still have far, too far to travel. Today, we seek legislation and new programs that will lead to that elusive goal, but today we must spend far too much of our time preventing the introduction of new barriers.

It’s time governments, the private and public sectors recognized our value, and commit to work with us to realize the IYDP motto.

We want our rights. When do we want them? Now!

What a Lovely Surprise

14 July, 2010happy posts, identity, introspective, make the world a better placegood thingsabby jean

I was recently reminded of the importance of noticing, appreciating, and celebrating “good disability moments” – those times when someone responds to me or treats me in a non-ableist way. This is more than the lack of discrimination or oppression, this is someone treating me as I want to be treated. Although these moments aren’t as routine as I would like them to be, they certainly come along, and I think it’s important to remind myself that not everyone will respond to my disability negatively or with fear or anger. Another side benefit is demonstrating how easy it is for people to act with compassion and caring on disability issues.

I read a post at Rolling Around that highlighted a recent “good moment”:

A Wheel-trans driver just came to pick up one of our members (a bit late, but understandable). While loading the member onto the bus, this driver took the opportunity to have a conversation with our member (she didn’t even realize that I was there). This member has a profound disability, he’s also blind and can’t answer back verbally. She spoke to him with kindness throughout the loading procedure, reassuring him he was going home, letting him know what she was doing and she was joking around with him. This driver has a huge heart and smile and made sure that no matter how stressed she was feeling due to traffic, she didn’t let that ruin someone else’s day. Too often people with disabilities are passed off and are not seen as “normal human beings” that have emotions and feelings. It’s a wonderful thing to see it when someone takes time out of their day to talk to members, be friendly, maintain professionalism and make someone smile with such a simple act of kindness.

I recently had a “good moment” of my own. I was at work, eating lunch with a few of my co-worker friends, people who know my disability status and whom I trust enough to feel comfortable discussing my disability issues. I mentioned how I had seen a lot of recent articles about lithium mining, spurred by the recent discovery of huge lithium deposits in Afghanistan, which prompted lots of articles analyzing lithium mining industries in Bolivia, and so on. I laughed that every time I see one of these articles, I have to consciously remind myself that the lithium they’re getting is to use in electronics and industry and that it isn’t being mined for pharmaceutical reasons. Partway through the story, I realized that one of my newer co-workers was sitting with us and remembered that I had not discussed my disability status with her, so continuing my story would basically be outing myself to her, but I was so far into it I couldn’t stop without also calling attention to my disability status. So I plunged ahead, saying that my reaction to those headlines is always to think “I don’t need that many pills! You all can stop mining the stuff now! I’m all set! Thanks!”

New co-worker laughed at the punchline and then the conversation moved on to other things. She didn’t stop the conversation to say, “wait, you’re on lithium? Isn’t that for crazy people?” or any other questions. She didn’t ask me what I take it for. She didn’t ask me anything, in fact, but continued to chat and laugh with me and the others with absolutely no change or shift at all. Since then, she’s continued to treat me exactly the same as before – griping about World Cup officiating, wondering if the A/C in our office will ever work reliably – and hasn’t mentioned or questioned my disability issues at all.

It is difficult to say how much this means to me. The ability to talk about myself, to share those jokes, without encountering negativity, curiosity, or even stares, made me feel like my disability did not set me apart from the group. That mentioning my medication in that context was equally mundane and non-notable as mentioning I have a cat, or drive a Honda, or don’t like beets. It was the feeling of acceptance. Of equality. And it was amazing.

What Does it Mean to Get Better?

12 July, 2010autonomy, identity, introspectivegetting betterabby jean

A few weeks ago, I read an absolutely marvelous post by Wheelchair Dancer, a letter to a TAB friend explaining why her approach to recovery and improvement was so different than theirs. It stemmed from an incident where the friend was “enthusiastic about how much better I seemed” and Wheelchair Dancer was unable to respond in the same way as her friend. She talks about how her improvements are not permanent, how she lives “in a cycle of event, recovery, plateau, and event. Sometimes, the recovery is actually an ‘advance or an improvement.’ But often, I struggle to get back where I was before. So, I don’t attach any great meaning or significance to recovery. I simply can’t.”

She talks about how she works on her body not because she is intent on achieving a cure or focused on “recovery,” but “because it give me great pleasure to do so. I am so excited to see what it can do, to push it to its limits.” And how that work is not part of a drive “to work for total healing and cure because I have come to understand a different politics of the body, one in which there is neither cure nor giving up.”

I have been sitting with this since I read the post, and I believe these ideas have immense power for me. While my illness is of the mind, not the body, I think the idea of defining for myself what “getting better” means, what goals I am trying to achieve with my treatment and medications, how I understand my own cycles of event, recovery, plateau, and event, is crucial to reclaiming my agency.

When I first got sick, I had a very different idea of what getting better meant. I was so overwhelmed with suicidality and self-harm that my idea of ‘better’ was any situation in which I felt in control of whether or not I was going to harm myself seriously. I didn’t feel safe in my own presence – I relied on watchers, babysitters, overseers – and wanted nothing that to be able to be with myself without fear. Once I achieved that (thanks, Effexor!), my next idea of getting better was to get rid of the tension and energy that would overwhelm my body periodically, forcing me to pace the halls, back and forth, back and forth, for hours on end, even while my body groaned with exhaustion.

A few years later, my conception of getting better had shifted completely. In my mind, getting better would mean I didn’t have to take those hateful pills every single day, would cut the tether between me and that prescription bottle. It would mean I didn’t have to have yet another first appointment with a psychiatrist where I rattled off my litany of trauma and despair. It would mean I never again worried about what thoughts would come to mind if i saw an x-acto knife or a pack of razor blades. It would mean I could put it all away, be cured, be sane, be normal, be like everyone else.

Pursuing that idea of getting better caused me significant harm. (In short: taking myself off all my meds all at once with no psychiatric supervision and dropping all therapy and counseling while moving across the country to a place where I had virtually no support system turned out not to be the best thing for me, and it took me about a year to pull out of the hole I dug for myself.) That idea of getting better was incompatible with my first conception of improvement – not being constantly buffeted by the desire to die and the periodic storms of energy that made me feel like a puppet dancing on the end of a string controlled by someone else. And when it comes down to prioritizing conceptions of improvement, I will always pick “not dead.”

Today, my idea of getting better has evolved significantly. It has nothing to do with taking pills or not taking pills, it does not insist on or exclude any methods of treatment. It is focused instead on me – can I do the things I want to do? Do I feel safe? And it relies on some things I’ve observed about myself and my friends with disabilities and the qualities that make me feel confident about our abilities to weather crisis events, to come through the other side and keep moving through that cycle of event, recovery, plateau, and event. There are three qualities I think are essential: 1) the ability to know myself and my illness well enough that I know when things are starting to go wrong, when crisis is approaching, 2) knowing what things can help ameliorate or prevent crisis for me personally, and 3) being able to ask for help and having meaningful help available. With those things, I know I can move through the cycle of crisis. It does not mean I can avoid crisis – I no longer think avoiding crisis is an essential component of “getting better.” I now think my ability to survivie crisis and move through it and beyond it is what it means to get better.

Which means, of course, that I am better. I’ve done it. I’ve achieved my vision. And that is worth more to me than I can ever say. And that is the power of taking agency over these ideas, of defining the term for myself. (And only for myself – I do not believe I have the ability or right to define what ‘getting better’ means for anyone else.)

(Again, thanks to Wheelchair Dancer for such an amazing post on this, which I recommend you click through to read in its entirety.)