Nov 052014
 

What do you do when your abuser is also your care provider, someone who bathes you, or dresses you, or whose assistance you need if you want to leave the house or communicate with other people? What do you do if people constantly tell you not only how good a person your abuser is, but how courageous and wonderful they are for helping you? What do you do when your abuser doesn’t treat you like a human being, but neither does much of the rest of the world?

Last month was Domestic Violence Awareness Month. IN all the awareness-building, all the activism and solidarity online, I saw almost nothing about people with disabilities who are victims and survivors of relationship violence.

This absence is startling when you consider that people with disabilities are statistically more likely to experience relationship violence than nondisabled people. (And considering that what we know about the prevalence of relationship violence for people of all abilities is only the tip of the iceberg, that’s scary.)

It’s not so surprising though, that disabled people are mostly absent from awareness campaigns, when we consider that disabled people are often invisible in society, and that invisibility is often what makes intimate partner violence (or violence of any kind) possible.

When an abuser can physically control if their victim leaves the house, and whether they get to talk to anyone, or can contradict their partner’s words and be believed because their partner has trouble communicating or sometimes loses touch with reality because of their mental illness, the incidence of violence against people with disabilities becomes even more invisible.

I recently read a small, qualitative study that looked at the impacts of intimate partner violence on the lives of women with disabilities. (As with research of nondisabled people’s experiences, a lot of the material on relationship violence and disability centres on the experiences of women. Men, and people who don’t fall into the gender binary, also experience relationship violence.)

The women in this study identified abuse as the most significant health risk they faced.

We can’t ignore that!

Many policy changes in the United States are calling for healthcare providers to screen for abuse. The implications of this need to be considered carefully when it comes to disabled people. Their abuser may be with them during an appointment to facilitate care or communication, and it may be assumed that this person has to be there. It’s impossible for any victim to truthfully answer the kinds of questions suggested here, if an abuser is in the room.

These are yes/no questions, though, and most people can find a way to indicate yes or no. It’s appropriate for a healthcare provider to spend time alone with all patients. Healthcare providers need to take an active role in meeting patients’ communication needs themselves, such as by making sure whatever technology the patient uses is there with them, learning how to use that technology, or providing a sign language interpreter. (Tip: If a partner says it would just be simpler for them to speak for the patient than for the patient to communicate directly with the healthcare provider, red flags should pop up like they’re on helium. They may put it in terms of making things easier for the doctor. I’d hate to think any doctor (or other healthcare provider) would privilege their own ease over communicating with the patient, but I’ve heard of too many times when a medical office has refused to do the work of getting interpreters for patients who need them to believe that this couldn’t happen.)

Many of the health factors research has shown are prevalent in people who experience abuse may be chalked up to disability without a full evaluation being done, so healthcare providers need to check their biases and beliefs about disability and illness and give their patients comprehensive care. Sometimes, when healthcare providers are less familiar with a patient’s medical condition, they may mistakenly attribute small changes to that condition, or presume that these small changes will be less bothersome to someone with a disability. There’s also the assumption a lot of people make about disabled people’s relationships not being romantic or sexual in nature, coupled with assumptions about what abuse looks like, that could colour healthcare providers’ evaluations of whether their disabled patients could be at risk of relationship abuse.

Being abused can both cause disabilities—physical as well as psychological—and exacerbate existing impairments. Experiencing abuse can impact how people manage their impairments or medical conditions—withholding access to healthcare is a form of abuse. The physical and emotional toll of abuse can lead to stress-related illnesses, compounding abuse victims’ disabilities with additional disabilities and illnesses. (as someone with multiple disabilities, I can personally vouch for the ways that multiple impairments make it harder to mitigate being disabled in this world.)

Another key factor that came up in this study was low sexual self-esteem. When we’re constantly bombarded with airbrushed photos of models, and magazine articles telling us the 101 best ways to please our guy in bed (not everyone has—or wants– a guy, and sexual pleasure can’t be distilled into surefire tips the way, say, scrambling an egg can be.) Meeting these cultural expectations is impossible. For people with disabilities, who often cannot do sexual things the ways other people can, and the ways our culture says “real” sex can be done—and who’ve gotten repeated messages that their sexualities either don’t matter or don’t exist—having any sort of sense of sexual self-worth can be a challenge. The women in this study talked about not being physically able to meet the sexual expectations of their partners, or the expectations society has of how women should be an act sexually.

The participants in this study whose sexual self-worth was lowest were those with disabilities acquired in adulthood, changing their sense of self (sexually and otherwise) and, because of these cultural messages, making it hard to build a new, just as strong, sense of self.

Several of these women expressed that they dated men they would not have considered prior to their injuries, dated men who had criminal histories, or with whom they didn’t click, or whom they didn’t find attractive. This does not mean that they dated men who were more likely to be abusive; it says, I think, that they had perhaps turned off, or at least dimmed, their own warning signals.

Some people with disabilities may tolerate abuse in relationships out of fear that no one else will want them. Sending this message is common among abusive partners, and this form of abuse is even more insidious for people with disabilities because many have also gotten that message from friends and family. As I mentioned above, many people think that folks who get romantically involved with disabled people are a step away from sainthood, and they sometimes will undervalue the sexual, intimate, or equal partnership parts of the relationship.

Part of the structure of society’s attitudes towards the sexuality of people with disabilities is that, even if we do have sexual thoughts, we don’t and shouldn’t have the time to act on them because we’re just so darn busy being disabled. If low sexual self-esteem is a risk factor for abuse, then someone had damn well better make time for recognizing disabled people’s sexualities.

Some of the risk factors correlated with experiencing relationship violence are especially common among people with disabilities. Unemployment rates are high among people with disabilities (the study linked at the top of this post also made this connection). And, while the specific statistics vary, it’s generally understood that people with disabilities are abused, in both childhood and adulthood, at higher rates than people without disabilities.

We have a culture that makes all sorts of excuses for abusers, and all sorts of excuses for why it’s not more inclusive of people with disabilities. If we had true community accountability we wouldn’t tolerate abusive behaviour. We wouldn’t have, when a parent attempts to murder a disabled child, an outpouring of sympathy for that parent, instead of the child she harmed.We would have a culture that says: “We know life was hard for that parent, but it’s never okay to try to kill your child.” That culture would also say: “We need to do better by disabled children and those who care for them.” (Yes, I’ve been talking here about intimate partner violence, specifically, but family violence is similar in that it happens in the home, and within the family unit—both of which are considered—like romantic relationships– beyond reproach and closed to outsiders.)

We’d also have a system in place for people of all abilities, because right now, people with disabilities don’t have equal access to the system we have for intimate partner violence victims/survivors.

It’s not all doom and gloom, and WTH is wrong with this world, though. My little anti-violence activist heart skipped a beat when I discovered these twoorganizations work specifically with people with disabilities who’ve experienced relationship abuse or other forms of interpersonal violence.

On that hopeful note, I’ll close for now (though I have at least another page worth of notes about things I’d like people to know about this topic).

Oct 212014
 

I’ve been taking part in the Save Wiyabi Project’s teach-ins on decolonizing the anti-violence movement. It’s hard to say important things in 140 character chunks, but we’re doing it, and I think it’s powerful. No, Twitter chats won’t change policies, but they will inform people, they will (or at least I hope they will) change the way activists do their work.

For me, talking with people of colour and Indigenous people–framing feminist issues around decolonization, poverty, community, and more–feels like coming home.

My formal feminist education (read: Women’s Studies degree) started this way.

Yes, I am beyond grateful to have had a first Nations woman, a First Nations scholar, as my first Women’s Studies professor. Some of my classmates didn’t appreciate this opportunity to learn quite so much as I did. Basically, they objected to the amount of material about First Nations people. I guess when they signed up for Women’s Studies 100, these young women, mostly White and mostly middle-class, expected to learn about themselves.

Yes, Women’s (or as it’s more commonly known now) Gender Studies does give students the opportunity to learn about themselves, much as the consciousness-raising groups of the 60s and 70s did. But, I say, (and not very charitably) if you want it to be all about you, go to therapy (and that’s no dis on therapy).

After all, the class we were taking was Women’s Studies, not Feminist Studies, so talking about the experiences, histories, beliefs, thoughts of many groups of women, not just the ones whose experiences mirrored our own, not just the ones who made what is commonly remembered as feminism happen, only makes sense.

Telling the story of feminism as “this was the first wave,” “this was the second wave,” and, “Oh, look, here’s a third and fourth wave” only tells part of the story. Framing feminist issues around the issues the leaders of these movements experienced and raised only tells about some women’s lives, of some people’s lives.

I’ve always felt more at home reading feminist writings by women of colour, Indigenous people, and other marginalized groups.

There’s a resonance to WOC (women of colour)and Indigenous writers, a truth-telling that moves beyond the individual…

Maybe I feel so called to these scholars, activists, and writers because even though their work doesn’t reflect my experiences as a disabled woman, they’re a lot closer to what I experience in this world than what a lot of white, particularly white middle-class feminists, have to say. The hot button issues of many white feminists just don’t speak to me as loudly. The “glass ceiling” means something very different to people with disabilities who regularly experience job discrimination before we’re ever hired—and frequently we’re not hired. Sexual harassment on the streets means something very different when our bodies are rendered invisible—when people push past a wheelchair user carelessly bumping them in the head with a grocery bag, or talk to someone’s service dog instead of to them, for example—and sexual abuse becomes much more a threat from people who provide our physical care or are in charge of our medical treatments, education, or rehabilitation.

I think all of us who call ourselves, or have called ourselves, feminist would do better to listen to WOC and Indigenous scholars, activists, writers, speakers—not only around their own lives and experiences (because it’s not often enough that White scholars, activists, social service providers, lawmakers, do this) but around everyone’s experiences. I think we can and need to adopt a more community-oriented approach…

Decolonizing the anti-violence movement means looking critically at the state. Here the state doesn’t mean Alaska or Florida (though both those states, especially the latter, would greatly benefit from learning a thing or two about how to treat people of colour and indigenous people). Here the state refers to institutions like the criminal justice system, social services, domestic violence shelters—basically any institution run by or funded by the government.

Decolonizing also means looking critically at the anti-violence movement—who controls it, what it’s politics are, whether it’s approaches are inclusive of everyone. Looking critically at the anti-violence movement means looking at who it doesn’t serve, and changing those imbalances. It means opening up the anti-violence movement to more diverse voices, not just the voices with the professional degrees and fancy words.

It’s hard to sum up everything I’ve learned from two-plus hours of nonstop tweets and reading almost two dozen articles.

Two things that came out of these conversations are that the justice system needs serious reform, and, we cannot adequately address the needs of people of colour or Indigenous people who have experienced violence without looking at the historical and cultural factors that have shaped their lives. I’m going to meander through these points a little bit here, touching on ideas that turn what I thought I knew on its head.

The current structure of the criminal justice system is harming more people than it’s helping. For a long time, I’ve bought into the logic that all abusers need to be locked away. Arresting an abuser and sending them to jail, however, often leaves the person who experienced abuse without financial or practical support. Arresting the abuser may not be what the abused person wants, may not be what is best for the household at that particular moment.

If the safest thing, and the thing the abused person wants, is to leave, they’re often limited in their choices for where to go. Domestic violence shelters, aside from frequently being full, or not culturally appropriate, aren’t open to or available to everyone. Natasha Vianna mentioned during the teach-in that many pregnant women aren’t allowed in shelters until several weeks into their pregnancies. Many shelters are not accessible to people with disabilities

Prison, in general, isn’t the answer to the problems of intimate partner violence. I was stunned to read some of the stats in this article.

  • 85-90% of women in prison have a history of being victims of violence prior to their incarceration, including domestic violence, sexual violence, and child abuse. (ACLU, 2011)
  • In California, a prison study found that 93% of the women who had killed their significant others had been abused by them. That study found that 67% of those women reported that they had been attempting to protect themselves or their children when they wound up killing their partner. (California Sin by Silence Bill, 2012)

There are more people in prisons, but the rates of sexual assault and intimate partner violence have not decreased.

The criminal justice system can do what it’s meant to—ensure justice. Lauren Chief Elk talks in this article about a law recently passed in San Francisco, requiring that all rape kits must be processed within two weeks of collection. This law doesn’t require anyone to report their assault, just makes sure that the evidence is processed in a timely manner if they do choose to report.

What it does do is make sure that individual law enforcement officers aren’t making decisions about whose rape is more valid. Should this happen? No. Does it happen? Yes. Discrimination, racism, classismhomophobia or transphobia, moral judgments, are not absent from law enforcement.

Victim-centered justice needs to be the starting point for correcting many of these problems. No, victim is not a dirty word. I initially learned that it was. Not all people want to be called survivors, contrary to my previous teachings within feminist sexual assault response circles that we never disempower people by calling them victims. For some people, acknowledging they were harmed, wounded, victimized, by their abuser(s) is crucial to their understanding of themselves.

Victim-centered justice seeks to deliver the power back to the person who experienced violence, however they choose to identify themselves. Victim-centered justice: It’s not about the system. It’s not about the offender. It’s not about the people helping. It’s about the person who was abused. They’re the best experts on their lives. They’re the ones who know what’s best for them.

A victim is much less likely to reach out for help if they know that a whole social service and criminal justice process will be unleashed just by them talking to someone about what’s happening or what has happened.

Yes, many people who are abused frequently doubt their worth, and may be less likely to seek help because of that. Being victim-centered means, though, offering support without presuming what sort of help is needed. The act of offering care, support and choices can help victims find their sense of self-worth, putting them into a position to make the right choices for them at that moment.

The desire to save people is strong. The desire to not see people hurt is strong, but deciding what people need without consulting them, without learning about their lives, is likely to lose you their trust.

I don’t know how this translates when offering support to children. Most people who work with children are “mandated reporters,” which means that if a child shares that they’re being abused, the person they share this with then must contact the police, Child Protective Services, or both. How do we help children not feel betrayed when they share their biggest secret and, next thing they know, their lives are turned upside down by court proceedings, moving house, and other forms of chaos? I really don’t know.

Victim-centered justice includes believing the victim, not insisting that they provide impossible sources of proof. Victims of (intimate partner violence (IPV) are required by the criminal justice system (CJS) to meet impossible standards of proof. They’re required to produce evidence of physical or emotional injury. Short of running a hidden video/audio recording device in the home 24/7, it’s often impossible to document empirical data. Do we have to wait until someone is fighting for their life in an emergency room before we believe them?

ON the other hand, The onus is so often on the victim to escape. That thing people who don’t know any of the inner working of a situation too often say: “She could have just left.” The prosecution in Marissa Alexander’s trial insisted, despite not having actually been there, that Marissa could have found a way to escape if she was afraid enough. It’s enough for me that she reports not having been able to escape safely. For many people in the midst of a violent event, the questions are: Escape where, escape how…will escaping put others (such as children) in danger?

Black and Native women have been bullied and harassed by the legal system since the beginning of colonized time, so the anti-violence movement’s centering of the legal system as a solution centres white women’s needs over those of black and native women.

Race has and does influence how many victims of domestic violence are perceived. Black women who’ve experienced violence have always been silenced, their experiences have been denied, or blamed on them. The dehumanization of black women, first as slaves, then as invisible but useful domestic help, has perpetuated this idea that what a black woman says just can’t be so. Historically, those times when the United States made it legal to treat black people as less than human really aren’t that far behind us.

The second leading cause of death for black women between the ages of fifteen and twenty-five is murder perpetrated by an intimate partner.

So, Black youth are experiencing high rates of IPV that escalate. Perhaps supports we already have in place are ineffective. Are they ineffective on practical levels, or on access levels; that is, do IPV victims feel comfortable/safe/welcome in accessing existing anti-IPV infrastructure, such as shelters, support groups, social services to change circumstances like poverty, hunger, or homelessness. Do they feel like they have the power and safety in these spaces to work on figuring out what’s best for them, or do they feel cautious and on-guard?

It’d seem like mandatory arrests when police are called to a domestic violence report would be a good thing, but they’re not. When the police can’t figure out who the aggressor was, they frequently arrest both people, revictimizing the victim, taking both parents away from children, etc. Mandatory arrests may also take the wage-earner out of the house, as I mentioned above. Plus, murders in States with mandatory arrest laws for cases of IPV are higher than those in states without the arrest laws.
Victims realize that if they call the police, their abuser will be arrested. So, they don’t call, and abuse escalates. You can read more about that here.

Much of this discussion on decolonization of the anti-violence movement uses the Violence Against Women Act (VAWA) as a starting point for dialogue.

This Act, while helping many people, has benefitted certain groups over others. There’s a conflict between the anti-violence movement, which works with the state to draft things like VAWA, depends on government funding, and so on, and groups who are fighting against institutional violence, such as Indiginous people and LGBQ and trans people. For example, people of colour are unfairly targeted by the criminal justice system, and are resisting this targeting. (Yes, racial profiling does still exist, even if it’s not in written policies.) LGBQ and trans people are, and historically have been, targeted by law enforcement for presumed sexual transgressions.

The anti-violence movement is working with law enforcement, so feels reluctant to speak critically about CJS policies that harm people. Workers at domestic violence shelters and sexual assault centres are often reluctant to get too involved in a case of someone whose abusive partner works in law enforcement, because they fear that this will put them at odds with the same system they’re cooperating with on other cases. But, this means many victims don’t get served.

We need to focus on community-building. Arresting abusers and sheltering abuse victims may keep some people safe, but it also isolates people from their networks, and fractures communities. Since First nations tribes and families have been fractured by colonization, we need to do what we can to prevent fracturing from other sources. Only a couple of generations ago, First Nations children were torn from their families and sent to government-run boarding schools where their culture, their very sense of themselves, was stripped away from them. First Nations communities are still feeling the reverberations of that today, in ways only community members can truly know or understand.

The anti-violence movement has become a professionalized field, not as much of the grassroots movement it started out as…so people without the right professional credentials aren’t hired or included. Since people with economic and social advantages are usually the ones who have the most access to education and professional experience, the people working with oppressed communities are frequently not from those communities. Education is not necessary for many positions in social justice and organizing work. The education people get in schools and professional training isn’t better than the education people get through experience. People know what they need, are frequently in touch with what their communities need in ways social service providers, lawmakers, and activists who don’t belong to those communities can never be.

This brings us back to victim-centered justice, not only making plenty of space for a victim to make their own choices, but also recognizing our own biases around what sorts of choices we think they should be making. A shelter worker from a middle-class background may not be able to understand why a woman who experiences abuse in her home and who also lives at or below the poverty line chooses to stay with her abuser—who happens to bring in enough money for the family to eat adequately, if not well. The shelter worker may not be able to understand this both because she doesn’t want to see the woman hurt, but also because she viscerally cannot understand enduring physical or emotional abuse for the sake of having some kind of financial security.

Victim-centered justice involves not judging a victim, regardless of what choices they’ve made in the past, giving a victim choices, not assuming what a victim will want based on how old they are, whether they have children, etc, believe, explain what you can do and find out what the victim needs from you (that is, don’t assume what the victim needs and start giving it to them).

Victim-centered justice is not supporting the jailing of a survivor of violence who has refused to ttestify at the trial of her attacker.
Victim-centered justice is not saying that someone wouldn’t make a good witness to the crime that was enacted on her body so the crime won’t be prosecuted.

Here are more good practices to follow when supporting someone who has experienced violence.

What are the answers? I don’t know. I think it starts with allowing many systems of justice to work together. The criminal justice system can do what it does best—keep people safe from violent offenders. Restorative justice, which is not, as it is often portrayed, solely or even primarily about about forgiveness and reconciliation, unless the person who has experienced the violence decides is the best option for them. Communities can work on being more supportive of its members, less tolerant of violence.

People from different communities, people who have different experiences and different kinds of knowledge, need to continue to talk.

Want to learn more about decolonizing the anti-violence movement?

What is domestic/intimate partner/relationship violence?

Child survivors and victim-centered justice

Free Marissa, VAWA, and how anti-violence backfires

Sep 302014
 

I just can’t wrap my brain around rape jokes being funny or appropriate.

This came across my virtual desk yesterday, and I am—I guess baffled is the best word for it. Quick version, there was a joke in the Simpsons/Family Guy crossover episode, which aired on Sunday, that poked fun at the idea of someone being raped. I’m baffled by how “Your sister’s being raped.” Is supposed to be the punchline of a joke. (I’m presuming this joke aired as planned, but I don’t know.) No matter how many times I read through the sequence, I still don’t get it, and I don’t think that’s just because I don’t particularly want to get it. I’m baffled by how an anti-sexual assault organization would see this “joke” as a tteachable moment.

I’m just plain confused.

How could an organization devoted to educating about and preventing sexual assault think this joke has educational potential? It just doesn’t. It’s nonsensical. Plus, in a comedy context it’s likely to go over people’s heads. Hell, I read it out of that context—you kno, the context where you laugh at everything and punch your buddy in the shoulder when it’s especially funny—and it went over my head. So yes, people might laugh at it, because they’re already laughing at everything else. They’re certainly not going to think about what their take-away from this scene should be. Most people don’t analyze their cartoons as they watch them.

One thing I’m wondering is if the idea that the “positioning” of the punchline being a pointer to why rape just isn’t funny is based on the idea that asking for lee Keybum (leaky Bum) isn’t all that funny. Thing is: Bart Simpson calling the bar and asking for nonsense names has been a gag on The Simmpsons since its early days. I personally find it amusing—not rip-roaring funny as I’m sure I did when I was a child—but certainly amusing. Maybe if someone doesn’t find that amusing, they might think that ending the scene with a rape comment makes it clear how ridiculous the hole sequence is. If indeed that was anyone’s logic, I’m not buying it!

Whether rape belongs in comedy is hardly a new debate. I knew I’d seen a particular feminist response the last time this issue came to my attention, and raced across the Internet (all the while feeling guilty for using the term “funny rape jokes” in a search engine) to find

Aug 112014
 

Update: George Takei has issued this classy, down-to-earth, articulate apology. I’m impressed by how he explains his actions without making excuses for himself (a delicate balancing act when you’re under word-fire from critics and fans), and by how responsive he is to learning and growing as a human being.

My favourite part:

The fact that I was surprised by the response the wheelchair meme received indicates that I do indeed lack knowledge, and some sensitivity, over what is clearly a hot button issue, and that I and others can take this as an opportunity not to dig in, but rather to open up to the stories and experiences of those in the disabled community.his “funny” play miracle, reimagining of Hellen Keller and Anne Sullivan’s story. As I said then, I’ve never seen this play, so can’t comment on its humour or lack thereof, but I maintain it’s not Savage’s place to use the history of a minority group he doesn’t belong to as a springboard for his dramatic efforts. Even if the presentation is funny (it’s theatre after all, and some might argue that the rules are different) the written injunction to the audience not to tell deafblind people about the play, because it’s offensive, really can’t count as a joke. That’s like hurting someone then saying “I was just joking!” in response to their pain. Oh, and if you actually say something will be offensive to this, that, or the other group, isn’t that a blatant admission of wrong-doing?

Elsa at Feminist Sonar sheds some more light on the “humour” in this play, which apparently includes a “hilarious” torture scene. Read down through Elsa’s post to see where she talks about Miracle; first she explains how torture of disabled people isn’t just a figment of Dan Savage’s (or anyone else’s) imagination. If you want to learn more about that, this article” has more detail.

So, now that we’ve recapped a little history…

Last weekend, George Takei joined the ranks of disability ignorance smoothed over with so-called humour. Granted, he didn’t invent this humour himself, but the fact that he shared the meme, and particularly the way he responded to people’s concerns about it, shows how little he knows about disability, disabled people, disability rights, and how little he appears willing to learn.

Michelle at Mommy Misadventures explains what happened, and why it was so troubling, in this open letter.

To be clear, I’m not furious with Takei. (I was seeing stars about Miracle for a long time, and that truly is a miracle as I can see nothing, not even light.) I’m more frustrated by his carelessness here (and, admittedly, unimpressed by his blase attitude), and by a still prevailing attitude that equality and decency around disability is something separate from equality and decency around anything else. Perhaps it’s too much to expect that someone who advocates for fair treatment of other minorities will at least be responsive when people point out stupidity, cruelty, or inaccuracy of a joke about a minority, even if he personally finds the joke funny? Perhaps it’s too much to expect that he’d understand the danger of perpetuating stereotypes?

Maybe it’s because I don’t drink much alcohol, but I don’t actually find this meme particularly funny. Or, maybe I don’t find it funny because, to me, a disabled person shopping—for anything–is just a normal part of life. Not only does this meme make the assumption that anyone who stands up from a wheelchair really can’t be as disabled as all that, but it also, I think, makes it a big deal that a person in a wheelchair would be shopping for alcohol at all.

As others have pointed out, by itself, a person standing up from their wheelchair could mean all sorts of things. Maybe standing up was painful or fatiguing for the person in the picture, but worth it to her. Maybe she stood to reach her beverage of choice because she could, easily and without pain or discomfort, but walking is painful, or even dangerous, for her. Maybe she did so because she didn’t need help, or maybe she did it because she didn’t want to ask for help and invite people’s attention towards her. Maybe she thought about asking someone to get her chosen drink for her, but then worried that someone might decide to judge her choices or lecture her about drinking alcohol or about the way she spends her money.

Disabled people, we worry about things like that because they happen to us on a regular basis. All you need to do is read the #AbledPrivilegeIs hashtag on Twitter to see the small and big invasions that can happen, sometimes multiple times a day—invasions that are frequently invisible to people who don’t experience them or don’t know to look for them.

Disability is hardly serious all the time. Sometimes it’s downright silly—to those of us who live it. We who are hard of hearing mishear things, sometimes with embarrassing and humiliating results, but sometimes in hilarious ways that turn into ongoing inside jokes between the hard-of-hearing person and their loved ones. People who can’t see (particularly before the advent of talking bar code scanners) sometimes open the wrong can or package of food with amusing results—sweetened condensed milk instead of chicken noodle soup, anyone?*
There are even disabled comedians, being funny, and talking about disability as only disabled people really can.

So, yes, disability is silly, but someone in a wheelchair who is able to stand to select the drink she wants to enjoy later isn’t silly; that’s just her normal. Shopping is normal for everyone.

Now, picture of a child who crawled into a fruit bin? That could be funny.

I think people don’t want us to ruin their jokes by explaining why they’re not actually jokes at all,

Jokes in real life are about things that are real and that are so ridiculous we couldn’t make them up if we tried. This joke instead makes something ridiculous out of a real event that really doesn’t mean anything at all except maybe (and maybe not) for the person in the picture.

When people tell you there’s a problem, I think it’s smart to listen.

A little bit of acknowledgement would have been nice.
Discrimination gets perpetuated by people continuing to say that something isn’t a big deal, or, even worse, that whatever’s happening is the right way.

This isn’t about fans not liking the joke. It’s about people saying: “There’s something wrong here.

Sure, no one likes having their activities and choices scrutinized, but that’s nothing new for celebrities, particularly those, like takei, who cultivate their public presence. Part of cultivating a public presence is being able to acknowledge when you were wrong, or when you made a mistake. “I didn’t know” is the oldest excuse in the book, but if it’s then followed by “…but I will learn,” there may be hope for humanity yet.

What I’m finding really frustrating about this trend, first with savage, now with Takei, is that we have two public figures, who’ve both been vocal about nondiscrimination and anti-bullying, who seem to not be getting that their public behaviors around disability are reflecting ignorance, and an unwillingness to learn. People look to these folks to find out what’s okay or not, both because people look up to celebrities (and, to be real, expect more of them than of the average person) and because these particular celebrities have, in diferent ways, made themselves authorities in advocacy and equality.

As far as I’m concerned, Takei and Savage can do anything they like in their personal lives (though I’d prefer that they not hurt people or animals, or pollute waterways) but people look to them as models for how to treat people, how to treat minority people, like people. This life, both that of the public celebrity, and that of the vocal anti-discrimination advocate, is one that both men have chosen and that comes with a social responsibility.

Whether we’re talking about It gets better or It’s okay to say Takei!, both Savage and Takei have been vocal about anti-discrimination and the harmful effects of discrimination. Do disabled people just not count? Judging from what I’ve read, perhaps not.

Andrew Morrison Gurza has made it clear that there’s an absence of disability-awareness in the gay community. Come on, dudes! Backing away from a guy in a wheelchair? If there’s that much fear and distaste, it’s hardly surprising that the advocates among you are ignoring and belittling disability.

Discrimination doesn’t exist in a vacuum, yet that’s how anti-discrimination efforts seem to be working. Disabled people, and some able-bodied folks who work with or love us, advocate for disability rights. Gay people, and some straight allies, advocate for gay rights… Substitute your minority group of choice.

Why can’t we move to a philosophical space where we all want to learn about each other’s struggles, and where they intersect with our own and where they differ?

I maintain that we will never truly meet any equality goals until we do this.

* Most blind people have a system for organizing food that we can’t readily identify by touch or smell, but like any system, there is a failure rate.

May 022014
 

Looky–if you must, though I’d rather you didn’t–but please, no touchy!

If I made T-shirts printed with the above sentence, they’d sell like hot-cakes among visibly disabled people.

We’re frequently objects of curiosity in public spaces. If it stopped at curiosity, we’d be doing fine, but that curiosity often translates into intrusiveness.

Every time I leave my house I may experience being seen as less-than, or incapable, because I am visibly disabled. I may be touched, poked or prodded, physically directed, spoken down to, stared at, pursued by people, all in the name of helpfulness and kindness.

Every time I leave my house, I may be touched without my permission, not a handshake of greeting or a tap on the shoulder, but an arm-grab, an arm around the shoulders, hands against my torso propelling me towards where it is thought I need to go, an uninvited hug. My body is used instead of words. I’m touched in these ways in the name of helping me.

Every time I leave my house, I may have people get into my personal space when I want to be left alone—in places and at times when one would expect that I could be left alone—and yes, people do follow me.

Perhaps all this sounds like hyperbole, but I assure you it’s all true, and that when two or more visibly disabled people discuss the experiences they have in public spaces, there are frequent nods of recognition and rueful, sometimes amused, sometimes mirthless, laughter.

Recently, a friend blogged about walking down a street, training her service dog, while a woman—a stranger to my friend–tracked their progress, following them in her car. One imagines that this woman must not have had anything important to do right then; one also knows how incredibly rude and creepy it is to stare at someone, and that it’s considered predatory to follow anyone without their expressed consent.

Another friend adjusts his work schedule (when he can) so as to not ride the bus at peak times, when there are likely to be more people engaging in what he calls “the grabby”–physically grabbing and directing him to an empty seat, or on or off the bus. Sometimes this grabby is accompanied by queries as to whether he needs help, but seldom is his “no acknowledged.

What never seems to arise in these commiseration sessions about our experiences as disabled people in public spaces is exactly what to call this collection of experiences. For lack of a better term, I call it street harassment.

Unlike many forms of street harassment, what people with disabilities experience in public spaces is all but invisible, not because onlookers are accustomed to it, not because they want to pretend it’s not happening, but because most of the actions comprising this harassment are chalked up to kindness, ignorance, concern, helpfulness, good intentions.

How do I know it’s perceived this way? Because people make these excuses for their own and others’ behavior. Frankly, it’s tiring after a while to hear that someone getting into my personal space, or making assumptions about me, or handling my body or my mobility aid without asking is just trying to be kind, or doesn’t know any better, or thought they were being helpful.

As a human being living in North American culture, I have certain expectations of privacy and personal space. Most of us who grew up in this culture grow up expecting that we won’t be touched by random strangers, that there is a hierarchy of touching (where your new acquaintance on the bus doesn’t stroke your arm or put their hand on your back).

As a woman, I have an expectation that people will be conscious of gender in their interactions with me. I’m often startled by the way men touch me, many of whom, I would like to think, would think twice about touching women they don’t know in the ways they touch me. The touching is obvious, out there; there’d be no way to deny it if someone was trying to be sneaky and manipulative with their intrusions.

Perhaps part of the problem here, part of the disconnect, is that I am genderless in these people’s eyes. I’m disabled first, woman second. Indeed, for some, I’m disabled first, negating my womanhood and putting me somewhere in a nebulous space of being childlike but having a woman’s body and doing adult things (like going out and buying my own groceries).

it’s also tiring not having words to describe this experience, this sensation of always being on guard, for there’s no place, time, or way this might or might not happen. it just does…single women, married men, concerned citizens of all genders may think they know exactly where I want to go (without asking me, or if they ask, not waiting for an answer) or draw attention to me I don’t want or need, or blow a need or want I do have into far greater proportion than it needs to be blown into.

Most of what I’m describing here isn’t explicitly violent, though physical and sexualized violence against people with disabilities does happen, in both private and public spaces, at alarming rates.

No, it’s not explicitly violent, but not being aware of it also paves the way, I think, for more violence.

Plus, it truly does unsettle me that disabled people’s space is invaded every day.; that this invasion leads to people feeling worn out, so demeaned, so reduced—and yes, so threatened by actions which onlookers see as considerate. It’s alarming that a disabled woman was surprised when her friend apologized for having to physically hustle her through an airport security line in response to TSA agents’ curtly given directions to hurry up (after all, that physical manipulation to follow the rules is seen as something that just has to be done, and we aren’t supposed to have feelings about it).

I’m sometimes alarmed by the strength of relief expressed by disabled people (including me) when a trip out in public is positive, with people talking to us like adults, respectfully assisting us only when asked and giving us loads of personal space.

Apr 222014
 

Okay, confession time:

A year ago I would have told you that I hated watching Law and Order: Special Victims’ Unit but that I couldn’t help myself. I would have told you that SVU WAS my drug, my guilty pleasure. The more I watched it, the more I saw to find fault with, yet the adrenaline-rushing, nonstop drama kept me hooked. I’d sit, watching episode after episode on Netflix, eating organic string cheese and getting high on having my emotions tweaked every 30 seconds or so.

An episode in which Detective Benson goes racing after an assault survivor, urging her to stay at the ER, get examined, and report her assault because “what if he does it to other women” was what finally broke this compulsive watching cycle. That particular episode morphed into a quite fascinating mystery that had nothing to do with sexual assault, yet that scene stayed with me. I felt the horrifying, traumatic unfairness of it.

Theoretically, I understand the concept of gathering evidence from survivors that may lead to getting a predator off the streets (or out of the boardroom, or away from schools), but… We all should always get to decide what happens to our bodies, including being able to decide how we talk about what has happened, what is happening now, or what we think, fear, or hope will happen in future. Our bodies are ours,and at no time is this more important than after a violation.

There was a time when I thought SVU was revolutionary, enlightening people on various gender, sexual, and social issues. It couldn’t be a bad thing, I thought, that the realities of sexual assault, domestic violence, and trauma were being emphasized.

Another but…

Forty-four minutes (that’s without commercials, some episodes are as short as 40 minutes) is not enough time to deal with any complex issue adequately, especially when such dealings are interrupted by the necessary plot twists, emotional outbursts, inter-character conflicts, and the like that make up popular nighttime drama. So ideas become skewed, fact becomes conflated with fiction (E.G. DNA results are rarely available as quickly as the show implies), and people wind up knowing little more about the social issue being tackled than they knew before they started. Sometimes, they know even less, or gain an unhealthy perspective.

In my life as a crisis hotline volunteer, and in my personal life, I’ve spent hours just doing the emotional support part of sexual assault response for one person at a time. It’s not easy; it’s not quick; it rarely involves sudden revelations which make everything clear and help details fall into place.

Having someone disclose also doesn’t mean that you can then, as a support person, prevent any further assault from happening. I couldn’t, and it took a lot of healing before that stopped haunting me every day. Even as I write this, the heaviness of that burden returns for a brief visit. I couldn’t stop assault, and neither can the police always do, as assault often happens within complex family or social systems which victims are afraid to break. Many victims are reliant on those who abuse them for financial or other resources, and social services are almost never as quickly mobilized as SVU IMPLIES.

The dramatization of pain, of violence, of terror numbs people to the reality of victimization, the gut-level, tear-wrenching, fist-clenching, body-cringing reality. I feel a little nauseated when I think about the emotional titillation, the morbid fascination, people have with violent dramatic portrayals on TV or in movies.

The portrayal of the investigative process is not only misleading, but is set up, I think, in such a way as to minimize the toll of that investigative process on the person who has experienced the assault. Have you ever seen, up close and personal, the evidence discovery kit they use after someone has been sexually assaulted? I have. During my training as a sexual assault hotline volunteer, I got to see a bag full of collection items—and that’s what they are. Syringes of various sizes with various tips, tweezers, swabs and little baggies. I don’t mind telling you I’ve never been assaulted, but I can tell you with almost complete certainty that I wouldn’t want to experience the invasion of a rape kit afterwards. That’s not to say that I wouldn’t do so, only that I wouldn’t want to.

So, to see detectives on SVU calmly asking questions while the survivor is being examined messes with my head. I don’t know whether this is common practice in real-life, but I just feel, on that gut-level, like it’s more violation. That examination needs to be a time when a survivor is supported by a trusted friend or family member, or a sexual assault advocate, or to be alone with the medical personnel if they choose.

It’s not just SVU’s treatment of sexual assault that bothers me.

I’ve never seen an episode in which alternative sexualities weren’t attached to criminal or disturbed activity in some way. Oh yes, they’ve got the gay and lesbian thing down just fine (for the most part), but anyone who enjoys kinky sex, or swinging, or group sex is fair game.

There was the episode in which a murder victim was found to have frequented a sex club. This “promiscuity” was explained by the way her abusive father had oversexualized her as a child. This wasn’t an isolated incident either. Whenever someone is found to have an association with alt sexualities, including in private spaces such as home or club, the detectives’ suspicion levels elevate.

In reality, many people who enjoy group sex, or swinging, or any other sexual practice outside of the rather limiting norm set by our society are doing so in healthy ways. They’re not working out childhood traumas. This isn’t to say that some haven’t experienced those traumas, only that they’ve worked them out in other ways, are aware of possible triggers, and are playing sexually for healthy reasons (like wanting to have fun). People with sexualities seen as alternative run the same gamut of personalities, professions, quirks, and personal life histories as anyone else. Many people assumed to be following sexual norms—aren’t, and are none the worse for not doing so.

Another episode I recall took this even further. A suspect or a witness (I don’t remember which) was goaded into telling the truth by detective Benson, who, after learning that he enjoyed submission and humiliation inn his sexual play, and had payed for these services, gave him orders and called him names during the interrogation. (And, of course, he fell for it hook, line and sinker. That’s TV drama for you!) It’s almost (but not quite) laughable that this man’s fetish was assumed to be his overall trigger; in other words, most people who enjoy submission, humiliation, or both in sexual contexts won’t just automatically respond to those triggers in everyday situations (if interrogation by the police can be considered an everyday situation). Again, too, a person’s sexual needs or preferences don’t automatically indicate criminality unless they’re acting them out on children or on anyone who hasn’t consented.

Over the years, many people have talked about the good SVU has done. I think that, at the beginning, there was more attention paid to gentleness and respect for the painful complexities of sexualized violence. As more characters were added, and the drama quotient was elevated (c’mon! Did we really have to have the Olivia-Eliot attraction subtext thing?) that attention to detail faded, or morphed into focus on the salacious parts. A good story has taken the place of attention to realism and humanity.

I don’t doubt that mariska harjitay’s Joyful Heart Foundation, and the other work she has done, has done some good. There’s very little in life that is truly good or truly bad. I don’t doubt that many women have written to harjitay to share their own experiences of assault. Any representation that isn’t wholly victim-blaming (in early episodes Harjitay’s character calls out victim-blaming quite frequently) is going to help someone feel safe enough to reach out. The injunctions from attackers, and often from society, to keep silent about assault, to keep secret, eat away at victims and survivors, and anything that helps at least one person isn’t all bad.

Much of harjitay’s work has been to clear the backlog of rape kits that has built up in state laboratories, so that more evidence can be processed and more people, theoretically, can be brought to justice. Again, theoretically, (since I don’t know of any recent case in which this has happened) processing all this evidence could also identify serial attackers, which would lead not only to mdealing out justice (whatever justice really is) but to crime prevention.

For justice to really be served, though, the criminal justice system needs a major overhaul. We need to see more work done on prevention, less vilifying of the victims, more vilifying of the crimes. We’ve not yet moved past the time and space in which people who’ve been assaulted aren’t blamed or bullied, in which their sexual histories, or choice of clothing, isn’t used as evidence in a courtroom, in which prison sentences for sex crimes are longer than those for burglary, and aren’t suspended based on time served before trial. (Yes, usually I’d find you references to cases where any of these things have happened, but it’s honestly just too depressing so I’m going to ask you to do your own research this time.)

There’s likely more I could write, but since I haven’t been watching SVU lately, except for the occasional viewing when visiting family, I don’t have any more episodes to deconstruct.

Ultimately, I just want to leave you with this thought (which could be applied to many other forms of entertainment besides SVU): We cannot trivialize strong emotions in TV drama. WE can never forget that sex crimes (or other violent crimes) can happen to all of us, at any time—that most of us know people who have been victimized.

This is real life, people.

Apr 132014
 

If we don’t remember history, we’re doomed to repeat it.

Yes, this is an old worn-out adage, and really should be: If we don’t do our research, and talk to a good cross-section of people, our understanding of history will be skewed and incomplete—and nothing good can come from that.

Not so catchy, but much more real.

What I’m finding these days is that as more histories come to light, as the realities of more people are given a voice (hello social media!), some histories, some realities, are still left out.

As a visibly disabled woman, I’m particularly conscious of how the histories and realities of disabled people are often left out of dialogues which include the histories and realities of other marginalized populations. This stings a little every time I see it, not because it’s specifically my reality being left out (as a North-American born white woman with economic advantages it often isn’t, but because the minority populations discussing these realities aren’t doing their research. They’re not practicing what I think of as true intersectionality, which isn’t just making sure all the voices are at the table, but including the histories and realities of those whose voices aren’t at this particular table. Yes, it’s a fine line between including those histories and speaking for the people those histories discuss (and we want to avoid speaking for) but so long as we use documented fact and anecdote, we’re practicing due diligence.

Can we include every single person’s reality? Likely not, we’re too individual, have too much amazing, beautiful diversity. Yet entire populations, populations with well-documented histories and realities if one knows where to look, are still being left out.

I’ve been noticing this particularly in the reproductive justice movement, and it was particularly obvious as I was reading this position on proposed changes to consent requirements around sterilization published recently at RH Reality Check.

I’m pleased that the groups who put this position paper together are reminding the public about this country’s long history of reproductive abuses against women, and urging reproductive justice advocates not to be so quick to dismiss safeguards against those abuses. But am disappointed that such an aware, well-cited mini-history leaves out the well-documented experiences of disabled people.

Disabled women were one of the primary targets of involuntary sterilization laws, which fell under the umbrella of eugenics, and became particularly prevalent starting in the 1920s, yet this article makes only one mention of women with disabilities.

Any quick Google search will pull up references to online and offline resources about the unconsented/involuntary sterilization of disabled people. This is not> a hidden history.

This history of eugenics and this archive from the Chicago Tribune are but two publicly available online resources, available to any interested party with a computer and Internet connection.

I’m disappointed that the organizations who signed this position paper left out this key part of history.
I’m disappointed that they seem to be following the common trend of rendering invisible any reality that doesn’t specifically speak to the one we’re trying to bring into the fore.

While the article nicely addresses the pros and cons of a thirty-day waiting period before sterilization procedures—we’re not nearly far enough away from the days when sterilizations were incorporated into other medical treatments without patient consent to do away with safeguards—I do wish that the mention of women with disabilities that does exist wasn’t so perfunctory and one-dimensional.

This is the only mention of women with disabilities in the entire piece:

What improvements to the Medicaid sterilization consent form would reflect the needs of women with disabilities, limited English proficiency, and low literacy levels, who want sterilization?

This feels an awful lot like being talked about, while rendering our collective history invisible. In other words, we don’t get to be part of the history-telling (and in so doing be empowered to speak our truth) but we can fit into a bullet list of policy-considerations.

Not only does this single mention in an article all about something that has routinely happened to us erase our reality, but it reinforces the assumption that the relationship women with disabilities have to sterilization is unilateral, and is that we would want it. This reinforces the idea that women with disabilities are not capable of the full range of reproductive decisions that other women—other people–are and that we don’t, in the course of our lives, find ourselves considering and making that same range of decisions.

I can tell you that this just isn’t true. Disabled people worry about getting pregnant, make decisions about whether to parent, have abortions, feel a range of feelings about those abortions, experience unwanted pregnancies and unplanned parenthood, think about how many children they want to have, wind up having fewer or more than they’d intended, and all the other health and life circumstances that fall under the rubric of reproductive rights or reproductive justice.

Looking at the list of organizations which put this position paper together, I noticed a distinct lack of organizations run by women with disabilities or devoted to disability research. I reached out to my favourite grassroots women with disabilities thinktank Gimp girl, to find out if any organizations were in fact addressing reproductive justice for disabled people.

They pointed me to these groups:

Center for Research on Women with Disabilities (CROWD)
and The Initiative for Women With Disabilities.

Both look excellent, and I’m happy to have them in my virtual rolodex of research.

They don’t appear to be doing any significant cross-issue work, such as with other reproductive justice organizations, though, and reproductive justice organizations don’t appear to be looking critically at the place of disability or disabled people either.

It’s not an easy thing to critique the work of prominent reproductive justice organizations, particularly when what they’re calling for is critical dialogue.

However, When we have a position article that references secondary sources, and which was clearly researched and constructed thoughtfully, the absence of information right there in the open, ready for the taking by anyone, is disappointing and frustrating. The reduction of disabled women’s reproductive realities—no matter how unintentional—to how and whether they can access consent forms for sterilization is, again likely unintentionally, harmful.

How do we, I wonder, integrate the voices of people with disabilities, and awareness of our collective history, into the general reproductive justice conversation?

Feb 132014
 

Next month I’ll be giving a presentation at catalyst Con on the Nuts and Bolts of Accessibility. I’m super-excited about sharing this knowledge with people in sexuality fields. It’s an exciting balancing act; walking the tightrope of educating while not instructing. In putting this presentation together, I’ve worried a lot about how to not make it sound like there’s just one way to serve the needs of all disabled people, or even all people with one kind of disability because there’s never just one way, beyond the one way of being respectful, caring, and treating all people like people.

Yet, one way is often how it’s framed, whether an event site is labelled “accessible” without specifying for whom, whether a sex toy is touted as being good for the “differently abled” (that term is like nails on a chalkboard for me, but I’ll explain that in another post), or some other all-encompassing statement.

Over the next few weeks I’ll explore here how we can talk about disability and accessibility both inclusively and expansively.

The nuts and bolts of accessibility aren’t just one thing, and they’re not literal. I won’t be handing out monogrammed Allen wrenches at the presentation to go with leaflets proclaiming “10 steps to make your service accessible.”

But nor is accessibility wholly theoretical.

Much of (though certainly not all of) being inclusive of most minority populations falls under the umbrella of developing compassion, recognizing and working with prejudice (our own and others), challenging stigma (our own and others’), and specifically not dictating what people should do with their lives (sexual or otherwise).

Making our spaces and services available, however, very often requires us to change what we do, not just how we think or act. It’s that “what to do” part of it I want to help people with.

I’m excited about talking to people at Catalyst, in particular, I think sexuality professionals are already perfectly positioned to incorporate accessibility thinking and action into our work. We’re already supporting people around deeply stigmatized parts of their lives. We already work with people as individuals and reject one-size-fits-all approaches.

The balance here is maintaining that individualized approach—not all people will need or want the same kinds of accommodations or assistance–while bringing our spaces and services in line with accessibility guidelines.

Accessibility is more of a practice than a philosophy.

We can be as inclusive of disabled people as we want, but if our Web sites look like so much nonsense to a screen reader, or our business is at the top of an entire flight of stairs (or even just one step), or the group activities we’ve planned for our empowerment retreat require listening, reading, or moving around, there will always be a group of people, or more than one, that will be excluded by the services we have to offer.

While what we have to offer cannot always be accessible to everyone—a painting class isn’t going to be much use to a blind person (though it can’t be assumed that all visually impaired people can’t engage in visual arts), and a talk deconstructing feminist philosophical writings might not be comprehensible or enjoyable to people with certain intellectual disabilities—most of us have services that can be tweaked to be available to pretty much anyone who might need or want them.

Establishing an accessibility framework or universal design of our programs or services means that any tweaks for individual customers or clients are just that, tweaks we’d make for any individual because of their marvelous individuality.

One thing I plan never to do, or at least not without a lot of thought and self-questioning first, is run disability simulations. A common disability awareness tactic is to have people don blindfolds, or move around in wheelchairs, supposedly to give them a sense of what it’s like to be blind or mobility impaired, or any other disability they try to simulate.

This is one of the most overused, and, in my opinion, useless and even harmful, “awareness” strategies.

We cannot learn what it is like to be another person, to have their feelings, experiences, histories by taking on one aspect of their existence for a short period of time. These so-called awareness activities simply give the experience of what it’s like to be oneself, without the senses or abilities one usually relies on. Any fear, nervousness, or trepidation a person feels cannot be attributed to the disability in general or to people who have that disability, but to their experience of temporary loss. Put more clearly, your experience of suddenly not being able to see your surroundings is very different from my experience interacting with my surroundings as a blind person, something I’ve done for twenty-eight years now.

What immersion exercises like these can do, I think, is make people more aware of environmental barriers.

To take another context, whenever I read about
We don’t need to do special exercises to develop this awareness. Understanding what being in a wheelchair in your place of business is like could be as simple as wheeling yourself around on a wheeled office chair, not to see what that is like on a feelings level, not to claim any sort of kinship with the experiences of people who need to use a wheelchair all or some of the time, but to see if you can still reach things, move through doorways, get to all parts of the room or building—in short, can you do everything you could do if you were walking?

I think impairment-immersion exercises are about as useful for raising awareness of the human condition as, say, homelessness tourism is for understanding homelessness. Spending a night in a shelter or hanging out with homeless people pretending to be just one of the guys can’t give one the sense of the days, weeks, months, or even years of being homeless (not to mention the days, weeks, months, or even years of circumstances that led up to that homelessness). All it can do (and this is a pretty significant all) is give politicians, and other decision-making folksa sense of how the services work, and of how society in general works for (or as is usually the case, against) homeless people.

When people do supposed disability immersion exercises, the response is often nervousness, titters and laughter, and a general sense of either silliness or disorientation. There are more respectful ways to break tension, and more useful ways to start dialogues and promote change. Much better, I think, to have intelligent conversations and use creativity from the vantage points we already have to understand our spaces and activities differently.

Stay tuned for more thoughts, and a few tips for starting to think about practical accessibility concerns.

Dec 202013
 

My ire was roused recently when reading about Dan Savage’s artistic venture, Miracle, a retelling of Helen Keller’s story. So that I don’t have to recap, I’ll let you read about it for yourself.

Yes, I know. I’m a little late (at least a year) to the game hearing about this, and later still talking about it. I needed time to gather my thoughts and calm my pounding heart of anger and disbelief. I needed time to think about whether I wanted to speak out against the work of someone who is such a publicly lauded member of the sex ed community.

I’ve taken that time, and I have no choice, per my sense of integrity, but to say what I think and how I feel. And, after all, Miracle was hardly educational.

Oh, and I’m still angry.

Furthermore, the broader issue here is timeless and one that isn’t discussed nearly often enough–how we talk about disability, and who gets to do that talking.

It’s pretty clear to me, with the recent, highly publicized debacle of the sign-language-interpreter-who-wasn’t and the ignorant, ableist theories, beliefs, and attitudes that have been voiced in response, that inclusion and acceptance of people with disabilities–in all spheres–still needs to be talked about. (There are also some pretty hefty concerns with how mental illness is being discussed around all of this, further complicating the disability discussion. While we only have part of the story, I suspect, from what we have heard, that this man should never have been put in the position he was in, for his sake as much as for anyone else’s. The South African government’s responsibility to ensure that it was hiring a qualified interpreter–preferably more than one–for deaf people’s access to information cannot, to my mind, be disputed. Yet, that’s what some people seem to want to do.)

All this to say that we’re not anywhere close to being done with the need for speaking up, clearly and often loudly, for how people with disabilities are perceived, included, and represented publicly, whether that’s in the arts or at an internationally important event. It also means we have to speak clearly, and often loudly, about the words and actions around this inclusion and representation.

————–

presumably, Miracle is supposed to be humourous. A discussion of the ethics and respect lacking in the mockery (no matter how artful, and no matter how humourous”) of a population one is not a member of would fill pages. Minority humour is live and well, and must, by virtue of respect, and of an inner knowledge of the workings of that minority group, be left to members of that group. Attempts at humour by people not belonging to that minority group smack of power, of appropriation, and of mockery. I think we call making fun of people for their differences bullying.

From an artistic, as well as human equality perspective, any humour not informed by the group the humour is about is bound to fall flat. Humour, as with everything else in life worth knowing about, requires thoughtfulness.

Since I haven’t seen this play, I’m not in a place to evaluate its humour objectively. I don’t like what I’ve heard, though, and think that it likely appropriates something the playwright has no knowledge of and views it through the lens of something he does know. Viewing someone else’s experience through our own lenses usually yields a mirky, and incorrect, image.

Helen Keller’s story is powerful. Through finding a way to transmit language to a child who could neither see nor hear, Anne Sullivan helped that child transform her life, and paved the way for other people to take hold of their lives in similar ways. That’s powerful, but not superhuman. Ms. Sullivan solved a problem for Ms. Keller—how to communicate—and assisted her with interacting with the rest of the world who didn’t communicate in the same way. The rest was up to Ms. Keller. Indeed, the story of what Ms. Keler did as an adult is at least as interesting as her childhood.

Most retellings of “Helen Keller’s story” leave her later years out. Also left out are the problems both Helen and Anne faced throughout their lives, not only individually, but in their interactions with each other. Very often, their story is told as “the Helen Keller story” not “the story of Helen Keller’s life.” See the difference? One is her story, the story other people put onto her; the other is the real story, nothing left out to make it more palatable or sensational.

While Keller and Sullivan’s story is often overdramatized and simultaneously oversimplified, it’s a pretty amazing story in itself. It’s not a story that anyone has the right to appropriate. Sadly, too many people have done so far too many times, though never, to my knowledge, in quite the way Miracle does.

What really rouses my ire about Savage’s play—and what I’ll talk about here–was the sign that was apparently posted above the stage. Ironically, if I had been to see the play, I’d not have known about this sign unless someone had told me about it, since I can’t see.

It said this:

This play will be deeply offensive to the deaf/blind community, so please don’t tell them. Keep your hands shut!

Really? Seriously? Someone thought it was okay to say this in public? A whole bunch of someones agreed with this decision? No one, from the actors, to the stage hands, to the theatre manager, realized that this crosses the limits of human dignity? In any other context but an artistic one, this sign would be seen as discriminatory.

I’m ordinarily quite gentle, too gentle, often too willing to give people the benefit of the doubt. Too many times I’ve been told to not object to someone’s disrespect of me as a disabled person as “They meant well.” Or “They don’t know any better.”

I’m not feeling particularly gentle this time.

Dan Savage is not, so far as intellect goes, a stupid man. So, he did know better, and, I’ve know doubt he did mean it—I imagine it’s “just a joke.”)

“Just a joke” is a worn out cop-out for saying something that shouldn’t be said.

“Just a joke” is a rickety bridge between the speaker of the “joke” and what they’re actually saying—a way for them to release responsibility for the true meaning of their words.

Suggesting that information be withheld from anyone is not a joke.

In the interests of full disclosure, I’m blind and have a bilateral hearing impairment, though I do not use sign and can usually hear what is said to me. I have friends who are deaf-blind and use sign, a computer, or a mobile device when out and about to communicate. So, this is personal for me, but I’d like to think that those for whom this is les personal could still know in their minds and feel in their guts that even the suggestion to withhold information is just not okay—and certainly isn’t funny.

I’d like to take away Savage’s (and anyone who agrees with him) mobile phone, his car keys, and his computer, and see how he feels about suggesting that communication should just be kept from anyone intentionally. I wonder if he’d think it was funny then?

Savage has likely never, as an adult, been denied information because someone else didn’t think he needed to know it. He’s likely, at least not in the computer-age, never had to solely rely on another human being for information.

To suggest that someone keep any knowledge from someone else who otherwise wouldn’t know or be able to access it is disgusting in the extreme. Think, for a moment, what it would be like if someone filtered what you knew through a screen of what they thought you needed to know. This information could include anything from the specials posted on the chalkboard in your favourite restaurant, to the fact that the people behind you are talking about you because they know you can’t hear them, to the plans everyone is making for going out, plans they’re conveniently leaving you out of. This can also include things like the entirety of what your doctor, lawyer, or financial advisor just told you. Get the picture?

Well, people do that to children all the time, you say. Yes, but disabled adults aren’t children! I’m also not a fan of keeping information from children anyway, though do recognize that information sometimes needs to be doled out differently based on cognitive and emotional development. Even then, I’m a fan of sharing and adapting the information in a cognitively-appropriate way, and not of willfully keeping information secret.

No, this isn’t like talking to children. We were all children once. We all had the experience of growing up, of having adults filter what we knew in one way or another.

No, what Dan Savage is talking about here is keeping information from adults because they might be offended by it. And…if they’re offended by it, that might mean that people will say he shouldn’t have written the play in the first place.

Oh, pardon me…I forgot. The whole thing is just a joke, including that sign.

Ha! Ha! I mustn’t take things too seriously…

Except for that part where it makes a joke of something that really happens to people, the withholding of information—something that denies their humanity, limits their options, and, depending on the information in question, puts them in danger.

I still find it ironic that I wouldn’t have known about that sign if I’d gone to see the play—unles, of course, someone had told me about it. I would have been ignorant, not of the play’s offensiveness, but of the excuses around that offensiveness.

I’m not the only one expressing these concerns. Given Savage’s work around the needs of young people, I think this young disabled lesbian’s words are particularly important. What she has to say about this play and its broader implications for Savage’s work and her own place in the world is worth a read, or two, or three.

Nov 292013
 

It seems that people lose all perspective on the nature of human interactions when visible disabilities are at play.

Last week, I read this blog post about just such a loss of perspective.

Apparently, a newspaper decided that two college football players sitting with a visibly disabled fellow student in their school cafeteria was newsworthy.

karin of claiming Crip gives a brilliant analysis here. She offers the clearest, most concise, most down-to-earth deconstruction of ableist thinking I’ve seen in a while–the most honest, most no-holds-barred explanation of exactly why it’s unacceptable–and inaccurate–to view disabled people, and the nondisabled people who associate with us, as inspiring.

It’s pretty apparent that, in this story, the perspective of the student these football players sat with wasn’t terribly important. There are quotes about him, but not from him.

It’s further apparent, to me, anyway, that this reporting is also a reflection of the cultural view of college athletes.

College athletes are often held in hero status in general, lauded at a level and for things far beyond their age and degree of life experience. Lauded in a way that actually negates their humanity. Here, praising them for–even reporting on the fact that they did–choose to sit with a visibly disabled fellow student in the cafeteria is ridiculous, and sends a larger message. Sitting with, spending time with, disabled people is inspirational.

Between the elevated status of college atheletes, and the reduced status of people with disabilities, there’s a real lac of balance in the way this was reported, never mind that it wasn’t worth reporting at all.

Having what is usually a visible disability–blindness–and having had numerous people sit with me while I ate alone in my university’s cafeteria, I certainly hope no one ever saw them as inspiring.

Yes, I even had a college hhockey player join me a few times. We had really pleasant, down-to-earth conversations, and he’d even say “hi” to me if he saw me other places on campus. Did this make him inspiring? I sure as hell hope not! He was a pleasant, well-spoken, intelligent guy. Lauding him for being friendly to me would just have degraded him, on top of what it would have said about my equality as a human being.

This inspiration credo is incredibly dehumanizing to disabled people (and to the people who genuinely care for or love us). It’s dehumanizing on an individual level, yes, but also in collective cultural consciousness.

One or two isolated incidents of being out in public with an able-bodied person and hearing that person’s actions praised can make one start to doubt oneself. One may look to others, ask about their experiences, start observing interactions in which they are not involved; one will see and hear the same story. That pervasiveness leads to the message that we are less than human, or that we’re superhuman for drawing friends to us who will be patient and caring for us, in spite of our subhuman disabilities. It also negates any caring or kind actions or feelings on our parts, making relationships with us appear to be one-way.

Sometimes, it doesn’t even take experiences to send this message; it’s built into the underlying consciousness: you are object, to be feared, admired, inspired by, but not equal in your humanity.

When I was getting ready to leave home for university, I was told by many well-meaning adults that people at college might be afraid of or put off by my blindness, that they might not know how to interact with me. I was told that I might have to go the extra mile to make friends, to be willing to meet people beyond halfway.

I believed this! Ironically, this belief trampled my confidence and led me to be more afraid, more timid, less friendly with folks. It led me to behave in ways that were probably seen as weird, rather than just settling into my shy, slightly nerdy,, but ultimately sweet and friendly self. It led me to question everyone’s interactions with me, to hold them at arm’s length rather than to welcome.

Remember that hockey player? I never asked if we could co-ordinate to meet at the cafeteria some time, or if we could hang out somewhere else. perhaps if I’d had more confidence, rather than feeling like I had to apologize for myself and avoid any awkwardness, perhaps if I hadn’t felt like I was a bother to people, I would have felt more comfortable making connections when they presented themselves.

I could have become friends with many people, or at least gotten to know them better if I had known how to step beyond my appreciation and gratitude that he had gone the extra mile, had met me more than halfway, by choosing to sit with me.

These messages elevating the actions of able-bodied people to hero status can leave their mark on we disabled people.

The idea of nondisabled people being brave, stepping outside themselves, even inconveniencing themselves to be nice to a disabled person is harmful in the extreme, both to the self-esteem of many disabled people and to how valid relationships (of any kind) are seen between disabled and able-bodied people.

I know of one situation where a lesbian couple- comprised of a Blac woman in her forties and a blind white woman– in her twenties had a lot of problems because of how they were perceived in public. The older partner felt that she was always seen as the caregiver of her younger partner, not as her equal, let alone as her partner. Given the history we have in this country (and others) of women of colour being in caregiving roles related to white children, elderly people, or sick people I can certainly see how this perception could have really hurt, on so many levels. Ultimately, from what I understand, it was one major factor that damaged the relationship beyond repair.

With all of these meanderings, the one thing I keep coming back to is humanity. the humanity of people in a romantic relationship. The humanity of people just headed off to college. The humanity of college students eating lunch in the cafeteria.

I don’t want to say we’re all the same, because we’re not–and that’s a good thing. I’m not saying that there aren’t really special, generous people out there–because there are.

They’re just not generous and special in who they choose to eat lunch with in a public space with multi-person tables and general seating.