Category Archives: disability activism

We Need to Consider More than Universities

activism, class issues, disability activism, feminism, gender, intersectionality, justice, othering, reproductive justice, shaming, social attitudes, violence, , , , , , ,

There’s a lot of really good stuff out in the blogoamorphia[1. Sphere, pshyeah.] about sexual assault on uni campuses. The focus is specifically on USian colleges and universities though Rape Culture exists pretty much everywhere with only slight variation. It’s worth reading, if you’re up to reading about sexual assault at all. (I’m not always.)

Predators are good at target selection. All of them. We see this in the uni rapists who repeatedly assault vulnerable young people. And the analysis of these assaults and assailants is valuable. I hope the attention being focused on this issue leads to real change in how sexual assault is treated by colleges and universities because the status quo is disgusting. Victims are made to undergo ‘mediation’ with their assailants in the name of ‘fairness;’ people known to administrations to be serial rapists face only the most cursory of punishments while their victims often leave, faced with an environment that could hardly be more obviously hostile; the government agencies tasked with reducing rape on uni campuses in the US have hardly bothered to appear to do anything at all.

But I’m a little uncomfortable that the focus is on the most privileged, most visible, most likely to be photogenic segment of sexual assault victims. Not that these people don’t need or deserve attention–they do. (And really I’d like there to be much more awareness that the things cis men do to each other are not HILARIOUS PRANKS but are sexual assault and should be treated as such. Cis men, you have a task: Even if you can’t be arsed to end sexual assault of other folk by cis men, you may wish to end assaults on yourselves by cis men. Hop to it.) I just worry that the pattern we see so often where the most privileged people are centered and marginalized people are pushed to the edges will repeat itself. That sexual assault victims whose circumstances differ will have a more difficult time being heard. That there will be a sense of “Well fuck we already had to care about these college [het cis probably currently non-disabled largely white largely middle-to-upper-class] girls getting raped and now you want us to care about you? Sorry, we’re all out of giving a shit.”

Because predators aren’t just at universities and colleges. All those uni students will leave school eventually. Not all predators even go to uni. They will all be looking for targets. Not only will they choose targets that are vulnerable and have a low risk of incurring negative consequences, they will seek out environments where there are large concentrations of their preferred targets. They will search for jobs where they will be in positions of authority over those targets. Predators that prefer children try to get jobs in schools or in religious settings. Predators that prefer disabled people, mentally ill people, or elderly people look for work in hospitals and supportive care facilities. Predators that prefer sex workers become pimps or police.

Part of the problem is going to be that people will be able to relate to the uni predators better. University-age women are often attractive people by accepted standards of beauty. Raping a pretty young cis woman is understandable–the rapist was attracted to her and wanted to fuck her and wanted to cut through all the preliminary bullshit and get right to the fucking. It’s harder for people to imagine wanting to fuck children or older people or disabled people or crazy people or fat people. Who’d find that attractive? (Who would rape you?)

It isn’t about sexual attraction. A predator’s preferred type of victim may not have anything to do with the sort of people xe finds attractive in non-predatory relationships (assuming xe has any) and may be of a different gender from xer orientation. Cis men who identify as straight and prey on children who read as male by ciscentric standards aren’t necessarily lying about their orientation, even to themselves. Predation isn’t about sex despite there being sexual gratification involved. (Though the predator xerself likely doesn’t understand this.) It’s about the predator making xerself feel powerful by stripping xer victims of power. It’s about the predator boosting xer self-confidence by humiliating xer victims. It’s about the predator feeling safer by making someone else afraid. It’s about hate. It’s about entitlement. It’s about controlling the behavior of others. And like all kinds of abuse, it’s about making the victims responsible for the emotions and actions of the predator.

Sex is just the mode of abuse. The choice of victim is about getting away with it.

So how do we not lose track of this? How can we address the issue of rape on university campuses without centering that experience of rape and marginalizing others? How can mainstream anti-rape activists not treat our experiences of rape as Other, as exotic, as something incomprehensible? Because that path leads to paternalism and patronization. It’s not good for us no matter how well-intentioned. It’s the sort of thing that leads to disabled people with ovaries being sterilized without their consent or knowledge at the behest of guardians who simply assume, with ample justification, that they will be raped in institutional care facilities. Since there’s nothing they can do about that (as we all know rape is a force of nature and not an act performed by humans capable of changing their behavior[2. MY SARCASTIC VOICE LET ME SHOW IT YOU.]) they can at least protect those people with ovaries from some of the potential things that could result from said rape. That one of the things they are protecting people with ovaries from is the possibility of bearing a child and being a good and loving parent–which happens even when a child is conceived by an act of rape–doesn’t occur to them. They know best, and they can’t imagine this person they’re placing in an institutional care facility being a good parent.

Cross-posted from my tumblr blog, Rabbit Lord of the Undead.

Judge Orders New York to Move Mentally Ill Out of Adult Homes

accessibility, autonomy, class issues, disability activism, justice, mental health, policy

From the New York Times:

New York State must begin moving thousands of people with mental illness into their own apartments or small homes and out of large, institutional adult homes that keep them segregated from society, a federal judge ordered on Monday. The decision, by Judge Nicholas G. Garaufis of Federal District Court in Brooklyn, followed his ruling in September that the conditions at more than two dozen privately run adult homes in New York City violated the Americans With Disabilities Act by leaving approximately 4,300 mentally ill residents isolated in warehouselike conditions.

The remedial plan offered by Judge Garaufis, drawn from a proposal presented by advocates for the mentally ill that was backed by the Justice Department, calls on New York to develop at least 1,500 units of so-called supported housing a year for the next three years in New York City. That would give nearly all residents the opportunity to move out of adult homes.

The Americans with Disabilities Act gives PWDs the right to live in the least restrictive housing possible – in this case, moving from adult homes into independent supportive living units. This is a great development for those previously forced to live in the abusive conditions of the group homes.

This lawsuit was filed after a series of articles in the NY Times about the horrific and abusive conditions present in group homes for adults with mental disabilities. It is unclear whether these changes would have taken place had the newspaper not devoted the time and resources to their year-long investigation of these conditions and problems.

Either/Or – Both/And

activism, bodies, disability activism, social attitudes

One of the ways mainstream media talks about things is in binaries. People are either book readers or they read nothing at all, for example. Women are either sluts or they aren’t having any sex at all.

People are either caregivers or they have disabilities and thus are cared for.

Or so I keep hearing.

So, when we talk about needs relating to children with disabilities, somehow the idea that there may be parents with disabilities who are primary caretakers for these children is missed. When we talk about caring for elderly or disabled parents or extended family members, we don’t talk about how to do that if you are also disabled. Because people with disabilities are cared for, right? You can’t be both cared for and caring for someone, right? Right?

Right now, I’m getting a lot of literature sent my way about “caring for” a spouse with Cancer. That literature will often include the information given by Family Caregiver Network Society: “We understand the common feelings of isolation, helplessness, exhaustion, stress, anger and guilt faced by family caregivers.”

All of that is often true for caregivers. But for some of us, that stuff is unrelated to being a caregiver because it comes from our status as people with disabilities in the first place.

I think this feeds into the ideas of disabled people as passive receptors of whatever, who never act on their own, who can’t act on their own, and whose only stories are those of being a burden. These perceptions feed into how and what support is given to families affected by disabilities that have long-term caring needs, what accommodations are made for meetings with caregivers (I was invited to a meeting in a space that isn’t wheelchair accessible, for example), and basically how society views everything to do with being disabled. Suddenly, your whole life is perceived as a burden to others, with nothing to live for and nothing to look forward to.

I know there are readers of this blog who are disabled and care for others, either in their homes or workplaces. I want to talk about how we are both disabled and carers. [1. ETA: It is not my intention to imply that if you are not both/and in this case, you are somehow a burden or not worth talking about, or ruining it somehow for everyone else. I am just focusing this particular discussion on that bit of intersectionality.]

Newsflash: Poverty is Bad for Your Health

class issues, disability activism, intersectionality, policy, politics, poverty, race

A recent study from Columbia University found that of all the health factors they measured, poverty had the greatest negative impact on health. The other factors they looked at included smoking, obesity, lack of health insurance, and binge drinking, all of which had a less significant impact on health outcomes than living in poverty. Poverty, defined as living below 200% of the United Stated Federal Poverty Level, was determined to take away 8.2 years of health, meaning poor people have 8.2 fewer years in which they are healthy than someone above 200% of the FPL (This is a standard measure of health burden, used by the WHO.) We should also be explicit that when we talk about poverty we talk about race – over 50% of black and Latino young adults live in poverty, compared to less than 30% of white young adults.

To which I respond, well, YES, clearly. But you would never know these things from the way we talk about health. Think about how many public health programs are focused directly on the spectre of obesity. There’s PE programs and school activity policies, public education campaigns (usually involving TV ads) to tell people to spend less time watching TV, there’s calorie labeling requirements and scolding people to go to their farmer’s markets and taxes on soda or foods with trans fat. Some of those policies may have worth, but their goal of eliminating TEH FAT ZOMG and thereby solving the health crisis is clearly misdirected. Even worse are the articles and attitudes engendered by this focus on obesity as a health issue, like this recent article in the LA Times, because they imply that a systemic issue like the health care problem can be resolved by individuals changing their lifestyles, rather than by systemic change on a much broader level.

The effect of poverty on health has been clearly documented. People who live in poverty are more likely to have asthma and diabetes. They’re way more likely to be exposed to parasites like toxocariasis, cysticercosis, and toxoplasmosis, which can have significant physical and neurological effects including seizures and developmental delays. They’re five times more likely to be exposed to lead paint as children. They’re twice as likely to have untreated cavities, which can lead to heart disease or infection and even death. This all means that from the beginning, even from birth, people living in poverty are more likely to develop or acquire a disability or chronic health condition.

It would seem, then, that addressing poverty in order to prevent those negative health outcomes would be a public health priority. But it really isn’t – poverty programs are rarely described as health programs. When a politician starts talking about welfare, they’re talking about cash payments to help parents raise their kids, to preserve and support families. They don’t talk about how assisting a family out of poverty will make that whole family healthier, and less in need of health care. And addressing the negative health effects of poverty – safely removing all the lead paint, preventing slum housing conditions like cockroach infestations and mold that contribute to asthma, get them some access to dental care – would have an enormously beneficial effect on hundreds of thousands of individuals and on the health care system as a whole. However, addressing the systemic effects of poverty isn’t nearly as easy as shaming “the fatties” and slapping some calorie numbers on menus.

This is especially galling because there is so much overlap between the community of PWDs and people in poverty. A recent study found that almost half of working-age adults who experience poverty for at least a 12-month period have one or more disabilities. People with disabilities account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents. Families with more than one member with a disability are even more likely to be living in poverty. There are two things going on here. First, people who live in poverty are more likely to be or become PWDs, partly because of the health factors discussed above. But also,  PWDs are more likely to live in poverty, partly because of the cost of health care.

All of this suggests that our conversations about health care need to include ideas about addressing poverty and that our work on poverty issues has special effects on health and disability. Hurrah for intersectionality!

Stigma Hurts Everyone

blaming, disability activism, medical practice, mental health, social attitudes

I read an interesting post recently, from a self-described “functioning alcoholic” discussing the possibility of treating alcoholism with pharmaceutical drugs. While there’s no successful pharmaceutical treatment at this time, there are a few things in development and it’s seeming increasingly probable that the drug companies will focus research and development efforts on coming up with something.

More interesting to me than the potential treatment itself were the issues raised in the post about concerns raised by this treatment possibility – because all of the concerns seem to be based on observations of how psychiatric medications have been implemented and viewed since their development. (These issues also obviously apply to pharmaceutical treatments for other conditions, including fibromyalgia, migraines, etc.)  The issues raised by the author of the original post include:

  • “Is it appropriate to battle a chemical addiction with another chemical?” This is parallel to the often-voiced concern about whether chemical/medication-based treatment is an appropriate response, or if it will just replace the symptoms of mental illness with dependency on psychiatric drugs.
  • “Won’t the pharmaceutical companies “define alcoholism down” in an attempt to get the broadest possible consumer base for their products?” – This is parallel to the concerns about encouragement to overdiagnose mental health conditions such as ADHD and depression in order to broaden the market for pharmaceutical interventions. It also draws from concerns about advertising Abilify and other psych drugs directly to consumers through TV and print marketing.
  • “Is life really worth living if you’re sober all the time?” – while the original author clearly intends this as a joke, I find it similar to arguments I’ve heard that “messing with someone’s emotions” through pharmaceutical intervention will inherently result in significant changes to that person’s personality and identity. This seems similar, in that it questions whether life will be the same if such a fundamental component of their self is being affected by pharmaceutical treatments.
  • “One of the arguments against a medicine-based treatment of alcoholism is that while it may certainly curtail the physical addiction it does nothing to address the underlying reasons why someone might choose to drink—anxiety, depression, an unwillingness to be in the world without some kind of sedating agent to take the edge off of existence.” This idea is often used to argue that medication-based psych treatment alone is insufficient, and must be combined with some kind of psychotherapy to effectively address the underlying emotional issues driving the mental illness. It is also sometimes used to suggest that taking medication alone is “cheating,” by mitigating the symptoms of underlying trauma or disorder without addressing the root causes, allowing the patient to ignore the root causes and eventually causing greater harm.
  • “I’m not unsympathetic to the argument that a certain amount of drinking is just fine. I know plenty of folks who drink almost as much as I do and manage to keep it all together. Why castigate their actions or make them think they need “treatment” for what could be considered just another lifestyle choice?” This parallels many of the discussions regarding what constitutes a mental illness and ties into the ideas of “neuroatypicality,” where a person’s mental functioning is described as different than typical mental functioning, without a value judgment as to whether typicality is better or worse than atypicality. It also references the underlying conception that being labeled as someone who could benefit from pharmaceutical treatment is shameful or stigmatizing, a judgment which would surely spread to those on the borders of atypicality.

I found all this fascinating because, while I’m used to hearing these arguments and issues raised in the mental health treatment context,  it’s clear that they are permeating our society and discourse beyond their direct application to mental illness.  Here, the spectre of passing out ADHD drugs in every elementary school classroom is being raised as a potential concern in the as-yet hypothetical development of a treatment for alcoholism – a serious condition which can lead to significant health consequences up to and including death.

To me, this says that addressing these issues – the misinformation, the stigma, and the bad acts of pharmaceutical companies – is important not only to people with mental illness, but also to the groups who could benefit from pharmaceutical developments and interventions yet to be developed. It is clear that these issues are so significant that they could discourage people from supporting or even considering the possibility of future treatments that could potentially help millions.

Feminist Icons

anna history rants, anna rants, biography, disability activism, feminism, history, , ,

One of the fastest ways to make women with disabilities seem pathetic and worthless is to erase or ignore their lives. Why should the Feminist movement celebrate women like Helen Keller, when everyone knows that Keller’s entire contribution was she learned how to talk – and that was entirely Anne Sullivan’s work, after all.

This is, of course, completely untrue [1. Well, not the bit about the water, but that it’s the sum total of Keller’s accomplishments], but there was a concentrated effort to ensure that Keller’s accomplishments were ignored. “Radical Marxist” isn’t as nice a story as “deaf-blind woman overcomes”.

If you learned about Helen Keller in school at all, you probably learned the same pablum-esque story I did: Keller was a horrible brat of a child who screamed and kicked and was bad. Then, Anne Sullivan, that angelic woman, came along and, through her virtuous patience, finally got Keller to learn. She stuck Keller’s hand under the well water, and spelled “water” into her hand. And suddenly, Keller learned that “water” meant this stuff pouring over her hand. And then many years later she graduated from Radcliff College, and this is why all the students in my class should try their hardest, because look at how much Helen Keller accomplished, The End. [1. I think I’ve just described the plot of The Miracle Worker – another reason why I’m irritated that the show’s being put on. Ooh, let’s perpetuate the idea that Keller’s life began and ended at that water pump!]

This idea of Keller is so pervasive that even books written about Keller in her lifetime – books that she wrote the introduction for – include the same story. To be vain and quote an essay I wrote last semester:

The only blind person who is given any voice or agency within the work [Ishbel Ross’ Journey Into Light: The Story of the Education of the Blind] is Helen Keller, who wrote the forward for the book, and is presented as “[rising] above her triple handicap to become one of the best-known characters in the modern world.” … [D]espite dedicating a whole chapter to Keller, Ross makes no mention of Keller’s politics or activism, instead describing Keller’s grace, “agelessness”, and book collection.

No mention of her membership in the Wobblies [1. Industrial Workers of the World. They’re still around.]. I guess that didn’t fit the narrative.

I learned about Helen Keller’s actual life story by reading the book Lies my Teacher Told Me. [1. Loewen, James W. Lies my Teacher Told Me: Everything your American History Textbook Got Wrong, New York: Touchstone, 1995.] It’s a book that’s a bit hard for me to evaluate properly because I went to school in Canada and it’s focused on American education and teaching. The section Keller appears in (cleverly titled “handicapped by history”) talks about hero-building and erasing things that add complications in our respected leaders. About Keller, Loewen writes:

Keller’s commitment to socialism stemmed from her experience as a disabled person and from her sympathy for others with handicaps. She began by working to simplify the alphabet for the blind, but soon came to realize that to deal solely with blindness was to treat symptom, not cause. Through research she learned that blindness was not distributed randomly throughout the population but was concentrated in the lower class. Men who were poor might be blinded in industrial accidents or by inadequate medical care; poor women who became prostitutes faced the additional danger of syphilitic blindness. Thus Keller learned how the social class system controls people’s opportunities in life, sometimes determining even whether they can see. Keller’s research was not just book-learning: “I have visited sweatshops, factories, crowded slums. If I could not see it, I could smell it.”

At the time Keller became a socialist, she was one of the most famous women on the planet. She soon became the most notorious. Her conversion to socialism caused a new storm of publicity – this time outraged. Newspapers that had extolled her courage and intelligence now emphasized her handicap. Columnists charged that she had no independent sensory input, and was in thrall to those who fed her information. Typical was the editor of the Brooklyn Eagle, who wrote that Keller’s “mistakes spring out of the manifest limitation of her development.”

Keller recalled having met the editor: “At that time the compliments he paid me were so generous that I blush to remember them. But now that I Have come out for socialism he reminds me and the public that I am blind and deaf and especially liable to error. I must have shrunk in intelligence during the years since I met him” She went on: “On, ridiculous Brooklyn Eagle! Socially blind and deaf, it defends an intolerable system, a system that is the cause of much of the physical blindness and deafness which we are trying to prevent.” [1. LMTTM, 22-23]

Among other things, Keller helped found the American Civil Liberties Union, donated money to the NAACP, supported birth control, was part of the women’s suffrage movement, and spent time in Halifax. [1. What? I like my city! She spoke at the closing ceremonies of the Nova Scotia School of the Deaf and Dumb. I’ve read her letters to the principal. I get kinda wibbly. Helen Keller was here!]

When we talk about Women’s History – and I understand Women’s History month is in March in the US[1. It’s October in Canada.], so that’s not too long from now – we are doing something wrong if we do not include the lives of women with disabilities. Helen Keller isn’t the only woman with disabilities who has been ignored, erased, or sanitized for public consumption – it happens over and over, to queer women, to women of colour, to women who are ‘marked’ as ‘not-mainstream’.

I think we can do better than this. I think we’re brave enough to not only confront that important women of our past participated in and encouraged others to participate in abuse, neglect, genocide of certain groups of women, but also brave enough to celebrate histories outside the mainstream.

Quoted: Karl Michalak, “Face Value” (excerpt)

autonomy, blaming, bodies, creative work, disability activism, justice, language, normality, Quotations, resistance, sexuality, social attitudes, , , , , , , ,

Everything healed up
but in a very strange way
Years later
when it was very obvious
that something was very wrong with my face
everyone
said one or more of the following:

It’s the Lord’s will.
Just learn to live with it.
It’s all in your imagination.
Don’t be so self-centered.
Shut up and do your homework.
Other people are worse off than you.

[Full text available in the 2004 anthology Queer Crips: Disabled Gay Men and Their Stories, edited by Bob Guter and John R. Kilacky.]

On Speculation and Boundaries…

disability activism, feminism, justice, media and pop culture, social attitudes, , , , , ,

Brittany Murphy died today.

It took exactly five seconds for the speculation to start up about why she would die of cardiac arrest at the tender age of 32, and not quite double that for the snarky comments to seep out of the woodwork. Because certainly if she had an existing heart condition we all would have known about it, since we have that right to her privacy.

What we have, much like the public consumption we have of celebrities, especially women, is a perceived right to make snap judgments about their lives and their health.

Brittany Murphy’s death is tragic on its own merits. She was talented and only 32.

And if there is any truth to the speculation, then she was sick. If she was indeed sick, then we, despite what we think, do not have a right to flaunt that illness about. She was ill, and she lost. And to me, that means something, on a human, and mortal level. There but for the grace and all of that. When I read the comments that speculate about what illnesses she certainly had or what addictions would be necessary to cause this premature death it is like nails on a chalkboard while chewing tinfoil whilst walking on broken glass but not the fun Annie Lennox version with adorably mistreated Hugh Laurie. If there is any truth to it then she was one of us. She was possibly like me and she lost. That scares me at my core. That was one of us in there and instead of having a moment to appreciate the gravity of that we are ripping her apart and we don’t even know. We Don’t Fucking Know.

Also, last I checked it is bad form to speak ill of the dead. But I suppose I am still an idealistic, silly girl to expect people to treat other people with human dignity. I have spent too much time in social justice for that.

If not, then her death was simply a tragic and random happenstance.

If any information is released, we have to wait for it and presume that it is the truth, and if not, we have to go on with what we have.

And either way, it isn’t our business, really.

She died, and that itself is enough. It should be. She gave us entertainment and amusement. She did what she loved with her life.

We should give her a modicum of respect in death.

May she rest in peace.

For Cereal, Internet?

disability activism, feminism, For Cereal?, justice, language, media and pop culture, mental health, social attitudes, television

A periodic feature in which we highlight some of the more ableist posts and comments in the blogosphere – the things that made us throw up our hands and ask “FOR CEREAL???” *

Today’s edition: a post at Jezebel titled “Woman, Go Take Your Pills!”: Schoolgirls Respond To Samantha Bee’s Christmas Conspiracies. Which, already – are you for cereal, Jezebel? The post reviews a Daily Show segment in which Samantha Bee meets with schoolgirls and, in the tradition of the Daily Show, presents outlandish and absurd positions to them as serious arguments. For example, she tells them that she doesn’t believe that Obama was born in the United States. The humor in the segment is the shocked and outraged responses from the schoolgirls to these positions and arguments.

At one point in the segment, one of the schoolgirls tells Bee “woman, go take your pills.” Which is problematic for a whole slew of reasons – the assumption that irrational or absurd political arguments are a sign of underlying mental illness, the assumption that medication is an appropriate treatment for all mental illnesses, the assumption that bystanders have a right to dictate the treatment a person pursues or receives for a mental illness. But none of these problems seem to have occurred to Anna at Jezebel, who chose the phrase to title the piece.

And the immediate response of commenters wasn’t to push back against this ableism, or to explain why using such a phrase is problematic, but to embrace the phrase as their “new smackdown,” per boobookitteh, or celebrating the “straightforward verbal beatdown these girls delivered so awesomely,” per BillyPilgrimisnotmylover.

So I award a “FOR CEREAL?” to Jezebel for approving of the phrase and using it to title their post, and a second “NO REALLY, FOR CEREAL?!” to the commenters for enthusiastically embracing this offensive phrase as their new go-to insult.

*(Actually, what I say, and what I considered titling this, is “Are You Fucking Kidding Me With This Crap, Internet?” but I’m trying to use less salty language.)

“Bad Activist” moments

activism, disability activism, feminism, gender, identity, mental health, resistance, social attitudes

I read a blog post recently by a woman with muscular dystrophy and her experiences going out to eat in restaurants. The author mentioned how wait staff rarely give her a menu, or give her a children’s menu instead of the standard menu. When this happens, she often just looks on with her mom’s menu rather than asking the wait staff to give her her own adult menu. She described that as a “bad activist moment.” While I enjoyed and appreciated the rest of the post, and marveled at the ableism she routinely experiences – wait staff giving her a sippy cup to use?! – the idea of “bad activist moments” particularly stuck with me.

A “bad activist moment,” if I understand it correctly, is a potential opportunity to highlight ableism, educate TABs on the abilities of a PWD, and instruct people on the correct way to interact with a PWD. It could also apply in other contexts – the opportunity to highlight and correct patriarchal or sexist behavior, or racist behavior, or ageist behavior, or any number of other discriminatory and oppressive behaviors. In this context, the person experiencing or observing the problematic behavior is a member of the class negatively affected by such behavior, but it could also, for example, extend to me as a white woman observing behavior that discriminates against Latinos.

I definitely think this idea has value and recognize that the term “bad activist moment” is likely shorthand for “an identifiable moment of opportunity for direct personal activism that I didn’t take” rather than a judgment on whether the person is actually at heart a good or bad activist. But I’m concerned that framing it as a “bad activist moment” suggests that to be a good activist, we must speak up and speak out Every Single Time we observe negative behavior, not just that affecting PWDs, but that affecting or oppressing any minority group or marginalized class. I know that I do not do this and if I did, I would likely suffer significant consequences. I feel I’m already on the edge of being characterized (and thus dismissed) as the girl who has a problem with everything and is hyper-sensitive on these issues and cannot in any way ever take a joke ever – and that’s with me pointing out about 1 in ever 10 problems I see. I worry that if I devoted more time and energy to those issues, I’d be pigeonholed as “politically correct girl” and nothing I said would be taken seriously or considered.

More seriously, though, it is infinitely more risky to raise issues of discrimination and oppression when you are part of the group that is being discriminated against or oppressed. Not only might this require someone who is “passing” to identify and out themselves, but explicitly claiming membership in the targeted group can lead to further discrimination and marginalization. In the racial context, it’s often characterized (and thus dismissed) as someone “playing the race card.” I’m not aware of a similar term in the disability context, but the trope of an “uppity” activist who “thinks they’re entitled to something” extends to all oppressed or marginalized groups. Identifying as such opens a person up to further attacks and discrimination and even physical violence.

Even without these very real risks, I believe that we should all allow ourselves the option to pass up potential opportunities for activism while still considering ourselves to be good and powerful activists. Even if all we did was live our lives as PWDs, that in itself would be an activist act, demonstrating that PWDs have interests, passions, relationships, emotions, LIVES. We would qualify as activists even if we passed up every single potential opportunity to do affirmative activism work.

My ultra-wise co-contributor Chally once told me that taking care of myself was a feminist act. Placing myself at the top of my priorities – even though I am a woman and “should” prioritize caring for others or building a family, even though I am a PWD and thus “have minimal value or worth to society” – is an act of activism. Can I do more than that? Yes, and I do, but I always try to keep in mind that my activism is and should be secondary to my own well being. In part because I’m not going to be able to do any activism at all if I burn out or hurt myself physically or mentally doing activism work. But also because the simple act of prioritizing myself is, in itself, activism.

So take the opportunities for activism that you feel you can. And let the others go by. And remind yourself at the end of each day that you were a good activist that day.