Feb 132017
 

(I first published this piece on another blog in April 2014 in response to an article on RH Reality Check – now called Rewire. It’s 2017 now. My writing voice is different. The way I analyze and critique issues is different.

Reproductive justice organizations are now making more of an effort to include disability and disabled people in their education and advocacy work.

…and I still stand behind everything I’ve said in this piece. Recent history is as important as long-ago history.

Advocates are doing better, but the kind of erasure I talk about here is still happening, which is why I’ve chosen to republish this essay.

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If we don’t remember history, we’re doomed to repeat it. That’s probably one of the first cliches I learned.

Instead, We should probably be saying: 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.

We’re still leaving people out when we write histories.

Even supposedly inclusive, progressive narratives are excluding people’s realities.

Even progressive, thoughtful writers are leaving out key pieces.

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 groups. 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 groups discussing these realities aren’t doing their research. They’re not practicing what I think of as true inclusiveness, not 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, yes, we want to avoid speaking for or over others) but so long as we use documented fact and anecdote, we’re practicing due diligence.

Can we include every single person’s reality? Of course not. Someone will always be left out. We’re too individual, have too much amazing, beautiful diversity, to expect that every one of us will always be represented.

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 – it makes me especially sad to see it here – and it was glaringly obvious as I was reading this position on proposed changes to consent requirements around sterilization published 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 mentions disabled women only once.

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 found those on the first page of my Google search.

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 they’re trying to bring attention to.

While this 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 reference to 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 always in the direction of exploring sterilization options. This reinforces the idea that women with disabilities are not capable of the full range of reproductive decisions that other women—other people–are capable of, 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? How do we break down the barriers that make reproductive justice activists afraid or unwilling to include disability and disabled people’s role in the movement?

Dec 042015
 

We need to talk about the fact that Kylie Jenner, a conventionally beautiful able-bodied woman who fits societal standards of beauty in almost every way is allowed to be sexy and edgy in a wheelchair, when that reality is so often denied to many wheelchair using women. We need to talk about the fact that disabled people, real disabled people, are still largely missing in media representation, especially media representation around beauty and sexuality.

–Karin Hitselberger: Why We Need to Talk about Kylie Jenner

When I first heard about Kylie Jenner’s wheelchair enabled photo shoot, I wondered: why a wheelchair? Why not a toilet, or adult-sized infant car seat, or a Victorian fainting couch.

Any of those could have helped her show how disempowered and imprisoned she feels by the media, and the first two would have given her plenty of options for the sexualized edginess she, or at least her photographers, were going for.

Instead, she chose a wheelchair, and BDSM gear, neither of which mean what she or the photographer thinks they mean.

So much has already been said about the choice to use a wheelchair in this shoot. I’ve stayed quiet all this week, because as someone who doesn’t use a wheelchair, this isn’t my conversation to have. but I wanted to pull this all together and look at it through a broader sexuality and disability lens.

let’s start with the BDSM gear.

Kylie wants to explore her identity. Lots of people use bondage gear, and BDSM gear in general, to explore who they are. Lots more use it to express who they are.

My collar is my mirror. It’s my wellness check. It’s my sense of freedom because it’s my sense of stability. It represents to me the journey I made through myself and my partner to earn my collar; The hard work and self-exploration and acceptance I had to go through to get it. When my partner takes me by my collar or cuffs me, or in any way binds me, it’s a reminder that I am face to face with myself in this life, and I’d better be the person I want to see close-up in those moments when I can’t break free. (Well, i could, but safe words aside, assuming they’re not part of this.)

I get bound for the kink, but within the kink, for me, is a much deeper place where I can feel safe and comfortable with who I am. Beyond that, my collar is my safety, reminding me I’m not taking on the world alone.

— Written by a friend (who is disabled, but isn’t a wheelchair user) when I asked about what the gear means in her BDSM relationship.

That’s not exactly imprisonment…and it’s not self-reinvention either. Sure, for some people, bondage gear is about putting on a costume, about becoming someone else, about doing something edgy and contrary, about reinventing oneself, even just for a little bit, but for most people, whether they’re dominant or submissive, BDSM gear is about expressing themselves more fully, not hiding from who they are.

Kylie was going for sexy. That’s usually what bare skin, corsets, and other fetish wear means.

Problem is, visibly disabled people (including folks in wheelchairs) aren’t read as passively sexual. Instead, we’re frequently read as nonsexual, as unlikely candidates for a sexual or romantic relationship. Or, we’re seen as sexually desirable because of our disabilities, which is a good thing, or a bad thing depending on who you talk to. Hint: Being transparent about finding disability attractive and sexy is good. Only being attracted to someone because they’re disabled (that is, not seeing them as a whole person) is not-so-good, unless the person is cool with it.

Either way, the sexuality of people with any type of disability isn’t automatically passive. People with disabilities have a full range of sexualities and sexual feelings, from not experiencing sexual desire or attraction (asexuality), to being submissive (not passive) in their sexual play, to desiring a traditional heterosexual relationship, to… pretty much anything anyone could imagine. It’s almost always the beliefs of others, not disability, that limit disabled people’s sexualities.

Now, the wheelchair.

Yes, wheelchairs do signify public scrutiny.

We’re told, by a representative from the magazine that the photo shoot “aims to unpack Kylie’s status as both engineer of her image and object of attention.”

most disabled folks don’t get to engineer whether they’re objects of attention or not.

Emily Ladau tells us just exactly what that scrutiny looks and feels like for her:

As a visibly disabled woman, I never have the option to choose if I want to put myself on display. People stare at me, often directly and unabashedly, because my wheelchair demands attention. I’m not sitting to make a cultural statement, though. I’m sitting because it’s my reality.

A nondisabled person using a wheelchair in a symbolic way is treading a fine line between accuracy and appropriation because she’s dictating what the wheelchair means. yet the wheelchair can have no real meaning for her since she simply sits in it for the photo shoot, then gets up and walks away.

For someone who needs a wheelchair, it doesn’t – can’t – just mean one thing.

Wheelchair users need their chairs for diferent purposes. Some folks only use a wheelchair when they leave their house; others can’t get out of bed without one. What someone needs their chair for, how long they’ve had to use one, why they had to start using a chair in the first place – all these things are going to afect how someone feels about their chair, and what symbolic meaning it has.

Disability rights advocate and sexologist Bethany Stevens posted on her Facebook page: “Disability can be very glamorous, wheels can be wings with bling.” Activist Ophelia Brown doesn’t think that way about her chair; she says that her wheelchair isn’t a fashion accessory.

But, Ophelia does agree thather wheelchair is her wings.

Bethany and Ophelia are both crystal clear; their wheelchairs are what make it possible to do what they do, to live the way they want to live. Their wheelchairs are freedom, not prison.

It’s great that Kylie loves to experiment with her looks. A person with a visible disability can change their looks all they want to, it’s still most often the disability, or the assistive device, that people will notice first, or pay most attention to.

S.E. Smith points out that the whole photo shoot would have read very differently if it had been done with a disabled model, and could have made a “powerful statement” challenging the idea that women are there to be watched, that disability equals vulnerability, that a woman can only express sexiness by making herself appear passive, or at least for what passes as passive in the public imagination.

If I’m told I’m attractive, it’s often said that I’m “attractive for a girl in a wheelchair.” But Jenner is considered sexy, full stop, because people know the wheelchair is only pretend.

— Emily Ladau: Dear Kylie Jenner, My Wheelchair Isn’t a Prop: Stop Playing Dress-up Games With My Reality

If Kylie Jenner really wanted to explore the way mass media represents her, she could have started by challenging that representation. What better way to explore feeling powerless than to express power? Instead, the photo shoot put her in a traditional feminine role (revealing outfit, serving drinks).

If Kylie Jenner really wanted to explore her powerlessness in the face of media sscrutiny, she could have started by exploring her sexual agency. She’s a young, conventionally attractive white woman. She’d have plenty of tropes and symbols to draw on for a photo shoot expressing how confined and controlled she feels without appropriating other symbols and totally missing the mark on what they mean.

Here’s a photo shoot with a disabled woman, a wheelchair user, exploring all parts of her life, including her sexuality.