Nov 142017
 

Last week I had the privilege of being on a panel about stigma, sexuality, and disability with Andrew Gurza and the cohosts of The Pulse.

We managed to squish a lively discussion of flirting, dating, stigma, self-disclosure, and loads more juicy stuff into a 35-minute radio segment.

The best part is that the show was recorded, and turned into a Podcast – and it’s up there on their Web site, right next to shows they’ve done on adaptive tech, travel, TV and movies – and more serious topics like the underemployment of disabled people, and the lack of services for Indigenous people with disabilities.

I really appreciate that the staff of The Pulse included a show on sexuality, acknowledging that it’s as big a part of life as all these other pieces.

You can listen to this conversation about stigma, sexuality, and disability at the following links:

Oct 212017
 

In 2014, I was getting ready to move across the country, so my activism was mainly limited to reading articles and joining Twitter chats. Here’s what I wrote for that year’s “Decolonizing The Anti-Miolence Movement” conversation, which coincided with Domestic Violence Awareness Month.

As always when I post these older pieces, I share this one with the caveat that my writing style, and the way I discuss and analyze social issues, has changed in the last three years. But, I do stand behind everything I’ve said here (even if I’d put it differently now) so I’ve chosen to just edit a few bits for clarity and leave the rest as is.

***Original Post Starts Here***

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. 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, pretty much all 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, 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.

Folks are also 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 means making sure the service providers and policy makers look like the service recipients. It means not drawing artificial lines between those who help and those who are in need of help.

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, classism, homophobia 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, not always harmful to everyone who’s experienced violence. I initially, as a young feminist, 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 workings 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, and 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 usually 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 benefited 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 testify 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

Jun 272017
 

Graphic of a hand making a thumbs-up gesture.A week ago I snuck into the National Alliance for Direct Support Professionals Webinar on supporting people with intellectual disability who are lesbian, gay, bi, trans, queer, or something else under the label of LGBTQ+. It felt like sneaking because I don’t work with folks with intellectual or developmental disability, directly or otherwise, but, actually, I signed up like everyone else. I’d heard about the Webinar on Dave Hingsburger‘s blog and I wanted to hear what he and the other panelists had to say.

I didn’t want to take a spot from someone who needed to be there for their work, so I signed up five minutes before the talk was scheduled to start, figuring that would make everything fair! :-)

Why did I go if I’m not a direct support professional? Promoting healthy sexuality for everyone is what I do. These conversations we’re having online are just the tiniest, tiniest part of what’s happening with disabled people’s sexualities in the world. If I can be a voice, no matter how small, to bring some of that into the light, I will.

I’m not going to go through all the facts and statistics they covered in this talk. They’re all in this article (this is a PDF file) from the International Journal For Direct Support Professionals.

Don’t be put off by the word journal. This one’s easy to read – not full of scholarly words and long rambly sentences. Basically, it looks like this journal is written for busy people who need the facts as quickly as possible!

But, there were a few interesting tidbits from the Webinar I’d like to share.

***

It shouldn’t still need saying, but people with developmental disabilities are entitled to the same rights as all people; including (from the journal article linked above):

  • Sexuality and sexual expression
  • Dignity and respect
  • Privacy, confidentiality and freedom of association
  • Access sexual education reflective of their cultural, religious and moral values

That people with intellectual disabilities haven’t been respected in these ways has lead to tremendous harm. Dave told the story of a client who had grown up in an institution, but was living in the community when Dave met him. The client was deeply depressed, though most of his care team decided he was just unmotivated. Dave and other supportive staff eventually learned that this man had had a long-term relationship with another man with intellectual disability when he lived in the institution. This man was grieving the loss of his lover. Once understanding staff members new what was going on, the lovers were reunited.

That story had a happy ending, but it just as well could not have – and the ending might not have been any happier if the couple in question was heterosexual.

The denial that people with intellectual and developmental disabilities even have a sexuality runs so deep that just asserting their desire and right to date someone can be like them “coming out” – no matter what their sexual orientation is. For a person with an intellectual disability, just announcing that they have a crush, or are in love, or have sexual feelings and desires is met with disbelief, ridicule, rejection, punishment – no matter the gender of their crush object or lover.

***

This panel worked on answering: How do people with intellectual disabilities know it’s safe to talk about their sexual orientation and sex and sexuality in general?

A few quotes that jumped out at me related to how folks work with their clients:

“If you haven’t made yourself a clear ally, you’re not an ally.”

“People in your care need to feel safe from you.”

“It’s my job to earn their trust not their job to give me their trust.”

“When you push someone to have a conversation, that just becomes another kind of abusive act.”

Allow people (applies just as well to friends or family as to clients) to come forward when they feel most comfortable.

Show acceptance and willingness to listen by being nonjudgmental in other areas of their lives.

For example: Avoid judgmental comments on their preferences, such as that they shouldn’t put jam on their peanut butter and toast because it has too many calories. (Support professionals are their to support adults with intellectual disabilities with living their lives to the fullest. That means not micromanaging or taking autonomy away – making sure these adults have choices, and access to whichever choice they choose. )

People will not trust you with the bigger stuff if you’re always harping at them about the smaller things.

Direct support professionals were encouraged to figure out who will be the carrier of sexuality information at their agency. Talking about sex and sexuality is something most people are pretty bad at, and giving the right information to clients with intellectual disabilities means being able to talk comfortably about sex and comunicate details in ways clients will understand and remember.

I really appreciated how honest and down-to-earth the speakers were – acknowledging that sexuality is messy to talk about in general,. We’re dealing with all sorts of social taboos, as well as the wrong-headed thinking that has governed the way the sexuality of people with intellectual disabilities has been “managed” for centuries. That’s not something anyone can reverse overnight, or through a journal article and an hour long panel discussion. I also appreciated that they acknowledged that many agencies serving adults with intellectual disabilities still have restrictive policies around acknowledging sexuality, and that staff at those agencies probably weren’t being given access to educational seminars like this one.

Postscript

As I was putting this post together, I came across this piece published in Slate last week. Really impressed with how the writer and editor chose to put this together, with the voices of folks with intellectual disability front and center.

Postscript the Second

The overall theme of this Webinar and the accompanying journal article was pride, and the article has one of the best, most direct, answer to the question: “Why isn’t there a straight pride day?” I’ve ever seen:

Because heterosexuality has never been outlawed, punished, or considered a mental illness and being heterosexual has never been cause for a child to be thrown out of a family, or for someone to lose their job or their home.

Mar 022017
 

(Originally published on another blog in 2014. My writing voice has changed a lot since then, but I still agree with everything I said here! I have a lot more to say on disability and harassment, and am reposting this older piece here to get the conversation started.)

***

Every time I leave my house I may experience being seen as less-than, or incapable. 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.

All of this because I am visibly disabled, some of it because I’m a small woman.

Every time I leave my house, someone will 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. In most contexts, following a stranger is called stalking. When you’re disabled it’s called the follower being kind and concerned, or not knowing better.

When disabled folks get to talking about personal experiences, the discussion usually comes around to all the times people touch us without our permission.

We tell each other stories. There are frequent nods of recognition and rueful, sometimes amused, sometimes mirthless, laughter.

We’ve all been there.

***

Recently, a friend blogged about walking down a street, training her service dog, while a woman—a stranger to my friend–tracked her 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 (not always) this grabby is accompanied by queries as to whether he needs help, but people rarely listen to his “no.”

What never seems to come up in these commiseration sessions about our experiences as disabled people in public spaces is exactly what to call what happens to us. 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, or good intentions. Who wants to put down anyone’s 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.

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. The more often something happens, the less likely people are to notice it.

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.

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.

Feb 132017
 

(I first published this piece on another blog in April 2014 in response to an article on RH Reality Check – now called Rewired. It’s 2017 now. My writing voice is different. The way I analyze and critique issues is different – and I still stand behind everything I’ve said here. The kind of erasure I talk about here is still happening, which is why I’ve chosen to republish this essay.

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

We should say: 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 material is 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 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 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 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 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’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 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 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?

Sep 132016
 

A graphic of a projection screen with a pie chart.

Projection Screen With Pie Chart

We’re all normal.

let me repeat that, we’re all normal.

Our bodies are normal.

Our relationships are normal.

Our sexual desires are normal.

Our sex lives are normal.

Note: This only applies if you don’t use sex as a weapon. If you do,stop…just stop.

*

Emily Nagoski is the Wellness Education Director at Smith College. During her keynote at this year’s Guelph Sexuality Conference, she shared one of her most life-changing moments teaching college students about sexuality. When she asked her students, on the end-of-year exam, so, you know, they had to answer – what one thing they learned from the course, the answers were, overwhelmingly, some flavour of “I learned that I’m normal.”

When we (and I mean we of any age, not just young people) talk to our friends, or read sexy novels, or watch movies, we see and hear conversations about sex that often just don’t resonate. We get the message, from those books and movies, that there’s one kind of sexy, and we’re not it. We worry, when we talk to friends, or see their bodies, if our desires aren’t like theirs, or our bodies don’t look like theirs. This reminds me of when I went to Cara Liebowitz’s workshop on asexuality at the Breaking silences conference and she shared how strange and isolating it felt to hear college friends talk about feeling horny, to hear the trope that all young people want sex, and to not know, on a gut level, what horny even felt like.

Another example: Most of us aren’t too interested in sex when we’re stressed, right?

Right – but most isn’t all. Apparently, studies have shown that 80% to 90% of participants reported trouble getting aroused when they were stressed out. That leaves 10%-20% of participants who got more revved up sexually when the stress piled on. Neither way is “right,” it just is – though I’m guessing it makes for lots of misunderstandings in relationships.

*

Emily wants to help people understand their own sexualities, and figure out what kind of sex (if any) they want by looking at what the science has to say.

If you’re a sex nerd like me – or, just a nerd – this is super exciting. I was on the edge of my seat, frantically taking notes, the whole time Emily was talking.

That said: Relying on the science does have limitations. As Emily pointed out, science still classifies people as either male or female, depending mostly on what they have between their legs. Yeah, there are other ways to measure that, but most of us haven’t had our chromosomes tested. And, even if we did, maleness and femaleness aren’t so clear-cut as all that. Sex and gender are way, way more complicated.

What Emily didn’t mention in her lecture was that there are other unknowns when we’re looking to science to tell us just what the heck’s going on with our sexualities and sex lives.

We’re limited by who gets researched: Is it mostly college students? Mostly nondisabled folks? Mostly people from one cultural background or another? Mostly people who are evaluated as being in “good health?”

How we experience life affects how our sexualities develop. it affects how we relate to our bodies, to other people, to the world around us. Our personal histories can affect how our bodies react, and how we react to our bodies

My biggest take-away from all the scientific research is that the results give us new ways of looking at the world, new ways of thinking about sexuality, and new ways of -possibly – understanding our own bodies.

*

The research also clears up, once and for all, a misconception that’s been around far too long!

When you’re having sex with someone, listen to what they’re telling you, not whether they’re hard, or wet, or panting, or flushed, or….

The way someone’s body reacts, doesn’t tell you whether they want to be having this sex. It’s called arousal nonconcordance and while the studies show that it happens more to participants who were categorized as women – in other words, people with vulvas and vaginas – this can happen with any person, at any time, for any reason. Yes, even people in long-term relationships can have their bodies act like they want sex, when they couldn’t be less into it. Wanting sex one day doesn’t mean wanting it the next, even if all the physical arousal signs are there.

It doesn’t help that wanting sex is usually talked about in terms of how fast someone got wet, or the fact that their penis was hard. I don’t know about you, but most novels I read take us from casual flirting to full-on arousal (and, implied, full on interest) in less than thirty seconds.

Emily read us a passage from Fifty Shades of Grey (first time i’d read any of it, and I doubt I’ll be reding more). Christian is spanking Ana, and remarks on how much he “knows” she likes it because he sees her wetness. Meanwhile, Ana’s thoughts are all about how much she doesn’t like it, and wondering why she’s doing this, and justifying to herself why this is okay.

Nope, Ana is not aroused, or having fun!

The worst part of judging whether someone wants sex by what their body is doing, rather than on what they’re telling you is when that person’s “no” or “slow down” or “I don’t want this” isn’t listened to. A friend told me recently about a mutual acquaintance who was trying to make out with her. He stopped when she asked him to, but he couldn’t resist observing that her nipple had gotten hard, as if that was some kind of hard evidence (no pun intended – really!) that she enjoyed the contact even if she said she didn’t want it.

Then there are the people who don’t stop. It’s way too common (and makes my stomach turn! – No, scratch that: Fills me with rage!) that sexual abusers will insist that their victims must have liked it, because they got wet, or had an orgasm, or moved their hips, or whatever lie seems to fit best and work to manipulate or discredit the “I didn’t ask for or agree to that.” Little do they know: Science is not on their side.

If the mind is saying no, we listen to that, however someone communicates that to us. period.

Here’s a Youtube video on arousal nonconcordance (fully captioned).

*

The second most pivotal thing I learnd was this:
Scientifically, sex is not a drive; we don’t need sex to survive, the way we need food, or water, or sleep, or enough sodium (salt).

No one ever died or got injured for lack of sex.

So, what we call a “sex drive,” that feeling that makes us want to get our sexy on? That’s actually called a sexual incentive motivation system. That doesn’t roll off the tongue so well, but there you have it. It’s totally fine if we want to keep calling it a drive, as long as we understand the differences.

A drive is for something we need to have to survive – like I said above: water, sleep, food, certain minerals from food.

An incentive motivation system is an external thing, external attraction, that pulls you into it and compels you to explore. Think of it like being intensely curious about something where you start reading everything you can on it, talking about it all the time, living it day in and day out, versus being dry-throated, fuzzy-mouthed “dying of thirst” thirsty.

According to Emily, when we say we have a high sex drive, we’re basically saying that we have a high curiosity for sex, a strong pull to explore sex or feel sexual sensations.

I have this in my notes, which I really love: Your partner, or a sexual act, is a source of wonder, exploration, curiosity – hot curiosity.

Takeaways:

  • We do not need sex to survive.
  • Sexual frustration will not kill you.

Sexual frustration will not kill you.

I repeat: sexual frustration, lack of sex, unsatisfying sex, not having a sexual partner – won’t kill you. It won’t even make you sick.

*

The title of this presentation was “Pleasure is the Measure.”

when we shed the things we think we’re supposed to do, or feel, or think, about sexuality, we’re left with what we want.

It doesn’t matter who you have sex with, or how, or why, or where (as long as you’re obeying local laws), or even if you’re having sex at all.

What matters is that it’s what you want to be doing.

It’s not just sexytimes and orgasms that make the plesure happen; it’s feeling safe, happy, secure, not doing things you don’t want to do, knowing what you do want to do.

Further Reading

Come As You Are

The dirty Normal

A sexually accurate romance novel “How Not To Fall”

Aug 252016
 

When was the last time you felt comfortable asking about your sexual health, or mentioning your sexual relationship, at the doctor’s office?

Sexuality is always a potential part of healthcare – we don’t usually leave our feelings, our relationships, our reproductive choices or experiences, and all the other pieces that can be part of our sexualities at home when we go for a doctor’s appointment, or wind up in the hospital, or talk to a social worker, or spend the day at the lab getting poked with needles or having pictures taken of our innards. Unless they specifically provide sexual healthcare, most of these people and places don’t include our sexualities in our healthcare discussions or plans. This isn’t going to work longterm for most of us; Most people identify themselves as being sexual or having a sexuality, and most of us are going to need to see the doctor or have medical tests at some point in our lives.

Last month I wrote about all the fantastic stuff I learned at the session on sex, sexuality, and relationships for neurodiverse folks at the Guelph Sexuality Conference.

Today our topic is Health Care’s Erasure of Sexual Pleasure.

Natalie Rose and Sophie Delancey, the workshop presenters, focussed on the experience of people with chronic illness or disability, but they pointed out that people receiving routine or preventive healthcare are just as much a part of the system, and just as much in need of improved care around their sexualities. They were also quick to point out that criticizing the failure of healthcare to address sexuality isn’t an indictment of individual providers; it’s a criticism of the system that trains providers and sets policies.

This workshop was packed! They had to bring in more chairs. People want to learn this stuff.

*

Natalie Roseand Sophie Delancey make a dynamic duo for presenting on sex and disability. Natalie was trained as an occupational therapist and has a spouse with physical disabilities; Sophie has worked in sexuality-related jobs since graduating from university and has recently become disabled. They’re also both super-vibrant and enthusiastic. They know their topic, and they love it.

One thing I really appreciated was that they both shared personal experiences and observations. Sophie’s role wasn’t just to be the disabled person telling her story and Natalie’s role wasn’t just as the rehab professional telling us about the research (or, in this case, the lack of research).

For example: At one point Sophie was telling a story about her time in the hospital after her strokes, about not being able to get the right words from her brain to her mouth to communicate that she felt crowded by having so many people around her while she was using a bedpan. Sophie pointed out that policies should address patient privacy, especially because many patients can’t speak, or can’t find the right words, or feel too stressed or intimidated to speak. She talked about how the rush-rush-rush of being cared for in a hospital or rehabilitation centre can feel invasive, and that it can feel dehumanizing, even with the best intentions, to not have the privacy around the most intimate parts of our lives (everything from using the toilet to sneaking a smooch with a partner) that most of us take for granted.

*

Telling stories about our lives and experiences is crucial to developing empathy, to highlighting diverse experiences, to making sure people know they’re not alone. But if we don’t center that in something bigger – and that something doesn’t have to be a footnoted, bibliography’d academic paper – we’ll all be sitting their telling our stories without gaining insight, building tools, or developing the power to make transformative change. The people we really want to reach – the policy makers, healthcare providers, social service workers, support workers – are going to walk away and go back to doing their jobs if we continue to simply tell stories without making targetted, applicable recommendations for change.

I’d like to just dismantle the system, but we usually can’t do that, so we need to give folks the tools to make their systems better – to do their jobs better. Like I said, the room was packed during this workshop, and I’d like to think that healthcare providers left with approaches to make their practices more inclusive of sexuality, more accepting of disability, even if they can’t directly impact the policies that se patients and clients as little more than the specific health problem or life crisis they come in with.

Making sex okay to talk about.

Our medical system is based on facts, biological happenings that can be observed and explained. For example: Unless healthcare providers find a reason for a patient’s pain, that pain is often dismissed or belittled. Patients’ Reports of pain often aren’t included, or described in detail, on medical charts. if a physical reason for the pain isn’t found, it’s assume to not exist, an the impact of the experience of pain on personal identity, relationships, daily activities isn’t explored or addressed.

Biologically provable facts are just a part of how most of us experience sexuality. Healthcare providers who want facts don’t know what to do with identities, experiences, feelings – and they’re not trained to know what to do with any of that. They’ll look for research on sex, and, mostly, find statistics on birth control methods, sexually transmitted infection risk, and sexual abuse prevention. These are absolutely important, but, noep, not the whole picture by a longshot. Another part of the picture? Most Medical students aren’t getting the training they know they need to be able to address patients’ sexual concerns.

When people don’t get this training, when there isn’t solid research, people tend to substitute their own opinions, especially around things as loaded as sexuality is for most of us. Or, they just avoid the topic as much as they can.

It’s hard for patients to get their needs met in a fast-paced, overworked, undervalued healthcare system as it is. If that need has anything to do with sexuality, most people are going to feel super-inhibited. Sophie’s biosays she had worked in the adult industry for five years before her strokes. With all that experience talking about sex, she still felt intimidated at the idea of mentioning her concerns about her sexual function to her healthcare providers. She didn’t want to alienate people who were addressing all the other needs she had after a sudden and life-threatening medical crisis. She didn’t know the parameters for what was okay to talk about. If no one mentioned sex and sexuality, she sure wasn’t going to rock the boat by mentioning it herself.

When providers don’t ask about sex and sexuality, the message is sent that it’s not an important part of health and healthcare.

patients don’t know if they’re allowed to talk about sex;
providers are often the people in power, even if they don’t see themselves that way, and it’s ultimately going to be up to them to open the conversation.

Not that that’s necessarily going to mean (or that we want it to mean) your primary care doctor saying: “So, how about that sex life.”

*

Some providers don’t like to bring up sex and sexuality first because they think doing so would conflict with their client-centered approach – therapy or treatment is client-directed, so if clients don’t bring up sex (or any other topic), the provider doesn’t ask.

Culturally, we have really strong taboos against mentioning sexual things in nonromantic settings – and even in romantic settings lots of people have trouble expressing themselves around sexuality, but that’s a story for another day – and many people have experienced doctors or other providers shutting down questions about sexual fears or problems. We’re at a point where healthcare providers are going to have to step up and be key players in changing the conversation.

Some of the ways Sophie and Natalie suggested showing that sex and sexuality are acceptable topics:

  • ON intake forms, include questions about sexuality, including whether the patient has any sexual concerns they’d like to discuss. If you think about it, we’re asked about all kinds of socially uncomfortable topics on forms and at appointments – poop, food choices, weight, menstrual cycles, you name it. We’re always allowed to not answer if the question makes us feel too vulnerable.
  • In intake and discharge processes: Include resources for sex and sexuality information, especially information related to disability or illness, in any packets of material provided to the patient. I need to add here that this packet should always be provided in a format the patient can read (This doesn’t usually happen; printed paper is the default. At the very least, someone from the medical ofice or facility needs to go through the packet with the patient so that they know exactly what’s in there.
  • When making a treatment plan. Occupational and physiotherapists, especially, work with patients to decide on the goals and direction for the treatment plan. They can include sexual or romantic activities in the examples they give to help their clients develop that list of goals. And no, I’m not suggesting that the therapy should involve sexual activity. There are plenty of non-sexual ways to meet physical goals for sexual and romantic activities. For example: Natalie mentioned that getting into and out of, and figuring out supports for the reclining bound angle yoga pose as a great nonsexual way to experiment with sexual intercourse positions where the person receiving would be lying on their back.
  • At the office, hospital, or rehabilitation (or log-term care) facility: Make this a sexually inclusive environment. Include sexual healthcare and relationship health pamphlets or posters available in the waiting area, and in exam and consultation rooms.
  • And, I really liked this one for providers: Wear a button saying something like “You can talk to me about sex.” As a silent reminder that sex and sexuality are accepted in that space. I should add: If the client or patient can’t read, or can’t see, they should be told about this, in the same sort of calm, “Oh by the way” tone you’d use to tell someone there’s bottled water available if they’d like some.
  • To all providers: If you don’t have sex an sexuality training, you can still talk to your patients about it. You can listen (that’s therapeutic in itself) and know who to refer them to.

There’s so much fear that goes into being sick, especially if it’s a sudden helth crisis, that, in my book, anything that will help patients feel better, feel more in control of their lives, have more pleasure, is a good thing.

Natalie told us about one woman she heard about, who, one year after her stroke went to her doctor for a follow-up, and asked when she was allowed to have sex again. He was, apparently, surprised, and told her she could have had sex any time that previous year. There that woman was, afraid that the sex she wanted would hurt her, and too afraid or shy to ask sooner.

Not that lack of sex ever injured or killed anyone, but all pleasure is precious, and no one should have to worry needlessly like that.

Jul 212016
 

I was excited to see Noah Eidelman’s workshop Neurodivergent & Naughty: Sex and Sexuality for folks on and around “the spectrum” on the schedule at the 38th annual Guelph Sexuality Conference., where I spent a fun, exhilarating, exhausting couple of days in June. Collectively, our conversations about sexuality and disability are still revolving mostly around physical and sensory impairments or illnesses. When we turn to intellectual and developmental disabilities, we’re still too often stuck at the question of ability to consent, or at validation of sexuality (including asexual identity) in the first place.

Noah’s presentation took us beyond that conversation, to the factors that can affect relationships, sexual identity, and sexual expression for neuro-atypical or neuro-diverse folks. Noah likes the shorthand of neuro-weird or neuro-whatever. As someone who would be considered neurotypical (more on that in a minute) I don’t feel comfortable adopting the term neuroweird, but I love it…because it describes just how messy and imprecise the whole neurodiversity umbrella is.

Noah started the presentation with some definitions and language etiquette.

I was pleased that Noah mentioned the problems with referring to someone as high- or low-functioning, something that’s done a lot, especially with autistic or mentally ill folks. This kind of language is a problem because it places value on the ability or inability to do something. Whether someone can tie their own shoes, count to ten, wipe their own butt, or live on their own without help isn’t a moral question. Assigning a functioning level to someone is supposed to tell the story of what supports or technologies they need, but it’s a sloppy shorthand. Much clearer to spell out what a person is or isn’t physically or mentally able to do.

When we talk about neurodiverse folks these days, we usually think about autistic people first, but the neuro-atypical umbrella can include people with ADD or ADHD, people with learning disabilities such as dyslexia or dyscalculia (difficulty learning or understanding number-related stuff), people with mental illnesses such as bipolar disorder or schizoaffective disorder, and other people with neurological disorders, brain injuries, and developmental disabilities.

In short, we’re usually talking about people who have been labelled with some sort of medical diagnosis. Sometimes, this is helpful, when it means that someone gets the support and validation they need for how their brain works. But the diagnostic process also has a really intense history of racism and cultural bias – for example, the history of racial prejudice in intelligence testing.

There’s really no such thing as a normal brain. I’ve looked for definitions of neurotypical, and most of them boil down to “not autistic” – an oversimplification on my part, but not much of one. IN everyday use, “neurotypical” often refers to cognitive functioning, learning ability, and what would be considered stable mental health.

I think that what we usually mean when we say neurotypical is the brain that can manage, or mostly manage, to deal with the world as we’ve set it up, to learn in the one or two ways that are considered acceptable or “normal,” to emotionally cope in the environment, to react to stress and external stimuli (loud noises, flashing lights, crowded subway cars, etc) in culturally acceptable ways.

None of this actually means, for example, that noisy, crowded, fluorescently lit environments are ideal, or good for our physical health, or anywhere close to ideal for helping us understand and remember things, or that the way we’ve set up classrooms and the way we teach information actually supports learning, or that our culturally sanctioned ways of conducting a relationship and communicating about or during sex are actually useful or health-promoting. So-called neurotypical folks just happen to be the majority (and majorities don’t always refer to the largest groups of people).

Here are just a few of the points Noah shared about neurodiverse folks’ experience of and needs around sex and relationships.

  • Communication needs and methods: Some folks are nonverbal, partially verbal, or only verbal some of the time or in specific situations. These folks communicate through writing, sign language, or other nonverbal methods. Other people struggle with social aspects of communication, such as how to make small talk.
  • Sensory Issues: Some folks are sensitive to being touched, or have strong negative reactions to specific textures, or temperatures, or ways of being touched. I think it’s important for we neurotypical folks to understand that these reactions are often Not just expressions of discomfort, but of deep distress.
  • Social skills: Trouble with or fear around meeting people, with knowing how to negotiate different relationships – neighbor, boyfriend, stranger. Some folks may also struggle with what diferent social cues mean, or when and where to act out diferent social behaviours. Noah stressed that not all neurodivergent people will struggle with social skills, and that some folks may have good and bad days with regards to their abilities to understand social cues, depending on their level of anxiety, whether or not they feel overstimulated, or other factors that might affect how their brain functions.
  • Self-esteem: A lot of neurodivergent folks have a low sense of self-worth. Here’s how I understood Noah’s explanation for part of why this happens: When you’re always told you’re doing something wrong (not expressing yourself the right way, not being socially appropriate,, “overreacting” to events or stimuli – loud noises, etc – that “should” be “no big deal”) and people are trying to show you the “right” way to do that thing or react in that environment, it can take a toll on a person’s sense of self and make them value self less.
  • Gender: Many neurodiverse folks identify as genderqueer;. If you already have a different perspective on the world than the one society dictates we all adopt if we’re going to be “normal” prescribed roles of maleness and femaleness already make less sense. These roles are less likely to feel right for yourself if they don’t make sense to begin with.

Even progressive understandings of sex and sexuality can exclude the experiences and needs of neurodiverse folks.

Our basic understanding of how to do enthusiastic consent doesn’t account for the communication or sensory needs some neurodiverse folks might have during sex. A person’s inability to consent might have nothing to do with whether they do or don’t want the sexual activity to continue. Sometimes folks can be so overwhelmed by the sensory input of sexual activity that their ability to speak, or to find the right words, or even to acknowledge that they’ve been spoken to might be impaired or absent altogether.

If communication is not being understood. If the person doesn’t have words. Or the words that come out aren’t the words expected for that situation, the feeling behind the words may not be understood or respected and this is when misunderstandings, and assault happen;

If their senses are overwhelmed, a person may not be able to say what’s wrong or how to fix it.
If “I don’t like this” comes out as movie dialogue or a word being repeated over and over… it’s unlikely a partner will understand, and know to stop what they’re doing, unless they’ve been told ahead of time that this is a typical response to feeling uncomfortable, anxious, or otherwise needing the sex to stop or change.

What to do when this is someone’s reality.

  • Set parameters about what’s going to happen during sex up ahead of time, when that’s the only thing people are thinking about, and there isn’t a whole bunch of sensory input to compete with.
  • Agree about wants, desires, and boundaries ahead of time in whatever communication form is strongest for those people on that day.
  • agree to what activities will or won’t happen, and agree to what words or signals will be used in the heat of the moment to indicate consent.
  • Noah suggested using a a neuro-diversity and sex checklist, like this one.

To help with communication during sex, people can try:

  • Asking their partner yes/no questions. For example: asking “Do you like it when I…” instead of “What are you feeling when I do this?”
  • Or, ask ranking questions.”How much are you enjoying this, with 1 being not at all and 5 being “Hell,yeah, don’t stop.”

It’s ironic, in a pleasant way, that noah’s presentation gave me new and interesting ways to understand some things I already knew.

I hadn’t, for example, thought about the ways special education and behaviour therapies could impair a person’s awareness of their own body, sexually and otherwise, but it makes so much sense. When you’re told that your perception of the world isn’t accurate, you can, I imagine, start not believing that any of your perceptions or sensations are accurate, or that they’re acceptable.

When you’ve been trained that the way you react to loud noises is socially unacceptable, you can start to lose touch with your instincts.

When you react negatively to being touched, and you receive behavioural therapy to “teach” you how to handle touch, you might start thinking that you’re not allowed to have boundaries around what’s done to you or how you feel about what’s done to you. This could have some pretty negative consequences for a person knowing how to protect themselves from unwanted physical or sexual contact, knowing how to ask for the kind of physical or sexual contact they do want, and for understanding and respecting other people’s physical and sexual boundaries.

Having these kinds of experiences can result in feeling out of touch with your own body, and you can need reinforcement that your body is their own.

***

Over and over again, I’m struck by how much our disability-inclusive conversations about sexuality are really the conversations everyone needs to be having about sex and sexuality. Like: Of course no one is the same (E.G. your current lover isn’t necessarily going to like the same things your last lover did, so having signature sexual moves isn’t going to do much for anyone except the lover who likes them.) IN other words, there’s no one –size-fits-all, magic bullet sexual technique that you can use and thereby avoid the awkwardness of asking your partner what they want.

Our ideas about what’s supposed to happen when in a relationship? They depend on being from the same culture, and being willing to mess up a lot because one of you thinks that first dates are for kissing only, while the other is sure the cultural rules say “second base” is absolutely acceptable. The idea that there’s a right way to do sex and relationship stuff and that everyone knows that way without having to talk about it is just a messy, harmful myth.

For folks who can’t pass as neurotypical, there are very real struggles, interpersonal misunderstandings, and traumatizing incidents – all of which can seriously impact sexual expression, or even how a person understands their own sexuality. Add this to cultural myths and you often have a mess.

There are so many parallels between the things that neuro-atypical folks find they have to think about, and the things so-called neuro-typical folks need to be thinking about if they’re trying to have healthier sexual relationships.

More About Noah Eidelman

Noah Eidelman is based in Montreal.

From the conference Web site:

Noah Eidelman is an atypical support worker, community organizer, workshop facilitator, childcare provider, and all-around nerd. Noah’s interests include (but are definitely not limited to): confronting systems of power and privilege, challenging assumptions and stereotypes, trauma theory, disability and disability justice, first aid and community healthcare, the awesome stuff learned by hanging out with kids, reading, cartoons, and pigeons.

(A love for community healthcare and pigeons? Rock on!))

Jun 072016
 

Disabled folks often get conflicting messages about what people think we can do. ON one hand, we’re seen as superhuman – as as supercrips of the highest order – or as childlike and incapable – or worse, less than human.

I recently wrote about the emerging voices of disabled parents (including the voices that aren’t being heard), and I remembered how this contradiction between capable and helpless played out in what I learned when I was growing up.

*

Growing up blind, going to a school for blind students, I always understood that blind people could be parents. Teachers and support staf said things like: “When you grow up and have kids…” Sometimes, a parenting class was offered for high school students – a lot of raw eggs (which are so very much like live babies, don’tcha know) rode home on the schoolbus with their “Mommies” and “Daddies” – though they’d stopped offering that class (maybe they ran out of eggs?) by the time I was old enough to take it.

But…when it actually came to talking about real live blind parents, what was said didn’t line up with the “blind people are capable” message. The subtext behind “she looked so tired” of the blind Mom shopping at the mall with her four children was that she and her blind husband shouldn’t have had so many. Behind the observation that another set of blind parents had a messy house was the implication that they couldn’t possibly take care of themselves, and their children, and their house – because of blindness. The mention of a single blind Mom’s baby not “smelling the freshest” was an indictment of her mothering, because clearly properly coupled (and married), able parents never walk around the grocery store with a baby who smells bad. I rarely heard these criticisms of visibly nondisabled parents; or, if I did, they weren’t so sweeping and self-righteous. It’s that old problem of something being blamed on a disability, when maybe a parent is just having a really awful day, or hadn’t had time for the weekly housework, or had a million other things going on that were way more stressful and hard to deal with than their disability.

*

I think I was in Grade 11 the year a “blind mother” was part of the annual Career Day line-up. I was sscornful, even a little angry; other schools didn’t have people come in on Career Day to talk about parenting – I was sure of that! (And I probably did have something there.)

But, okay, let’s be real; I turned my nose up at the very idea of a talk from a Mom being on par with a session given by a lawyer, or a massage therapist, or an artist. No, not one of my more enlightened moments!

Looking at it now, knowing that being a parent is bloody hard (sometimes literally bloody), and underappreciated work, and knowing what’s stackd against disabled parents (negative attitudes and legal barriers), I think we did need to be hearing from folks who were actually living this life that people told us we could live.

Actually, we needed to hear more from blind and visually impaired folks just living all parts of their lives – getting married, choosing to parent or being a caregiver to family members, choosing to pick up and move to Columbia for a year, or… As blind children we actually needed to hear a lot more from blind adults in general, – to learn from their experiences, from their processes, their successes and failures, the tricks that worked for them and the on-the-fly adaptations they made – not just to learn from the teachings of nondisabled people, who taught us how to get around by listening to traffic sounds and using our white canes properly, or how to cook safely (without ever, ever burning yourself), or how to read when most of the material out there (this was in the 1990s, before the explosion of the Internet) was beyond our ears or fingertips, or was too small (or the wrong colour) to read with impaired vision. We needed to learn what ableism and inaccessibility both looked like, how people responded to those experiences; we needed to learn that the tools and techniques were great, were useful, were indispensable really – they’re just not always enough.

*

Back to parenting…

None of what I learned or observed affected my decision not to be a parent – a parent to human beings anyway. That’s a different disability and reproductive rights story I may or may not tell some time. Having kids is a deeply personal choice, you know.

*

There’s nothing about having a disability that makes someone less capable of parenting.

That feels too obvious to even say, but it’s a truth, obvious or not, that needs to be repeated over and over until people get it, until disabled parents don’t have to fight tooth and nail to be able to care for their own children.

It’s a truth I’ll repeat: Disabled people can be parents. Disabled parents are just as capable of being strong, nurturing, loving parents as anyone else.

How well a person parents has way more to do with whether they wanted to be a parent in the first place, how much social support they get, and their own unique personality.

All parents are going to find, some time or other, that they respond to their child in a way that’s confusing or upsetting, and this is just as likely to happen in a context that isn’t disability-related at all.

*

According to Judith Rogers’ book The Disabled Woman’s Guide to Pregnancy and Birth, what babies most need from their primary caregiver – the person or people they form a bond to and know they can depend on – are food and comfort. Any other needs can be met by anyone the baby knows and is comfortable with, and whom the parent trusts.

Yes, that means it really can take a village to raise a child, and that a parent (whether by blood or adoption) can be an amazing parent even if they can’t carry their baby around the house, or dress it, or give it a bath, or if they do all those things with one hand, or rolling around the house in a wheelchair, or by touch and smell only, or only on days when their pain levels are low enough to let them get out of bed.

The interviews in this book highlight how adaptable children are. They don’t count their parents’ fingers and toes first thing! They don’t know that most people change diapers with two hands, or look at the number on the thermometer instead of listening to it read aloud, or run to pick them up every time they let out a squeak. They don’t know there’s a way their parents are “supposed” to do things; they just know “Is this person here for me?”

One woman Judith Rogers interviewed shared a story about how her toddler fell on the stairs, picked herself up, walked over to Mom’s wheelchair, climbed into Mom’s lap,and only then began to cry. Needing to go to Mom for comfort, instead of Mom coming to her, was just part of this little girl’s life. (And for people who wonder what the Mom would have done if her child was severely hurt and needed help? Well, she would have moved mountains is what she would have done. They just would have been different mountains from those in the way of someone not using a wheelchair.)

*

With so many disabled parents (at least 4.1 million in the U.S. alone) caring for children, you’d think there’d be more support for them, and recognition that disability is rarely at the top of the list of deciding factors for whether someone is fit to parent. That there isn’t this support, and that there is active resistance to the idea that children can grow and thrive in homes with disabled parents, speaks to, I think, the tendency to treat adults with disabilities as childlike, and to the idea that parenting tasks can only be done in one way.

Consider this advice from Disability, Pregnancy, an Parenthood:

“Do not try to show practical things (such as bathing/changing and breastfeeding) and talk at the same time. It is impossible to look at two different things at the same time. Explain, show, check understanding, let the deaf parent try it out and then correct any misunderstanding.

Working With deaf parents: A Guide for Midwives and Other Health Professionals

It makes sense that you wouldn’t teach something to a blind person based on a diagram, or force a deaf person to choose between watching your hands or watching your face, or decide someone with one hand can’t possibly prepare a bottle even though they manage all their other life tasks successfully, if not easily. But when it comes to parenting tasks, we seem to have these conflicting ideas that parents will just “know” what to do, and that there’s one acceptable, safe way that everyone needs to lern. And, when disabled parents don’t know what to do (because who ever knows when they become responsible for a new life?) and they’re not capable of following the good-parenting checklist, they’re often seen as lacking.

What’s the solution?

Listen to people who are living it!

May 202016
 

In thirty-five states (and the District of Columbia), children can’t trust that their healthy, happy family will be able to stay together if one or both of their parents is disabled. That means that in almost three quarters of the U.S. the law allows for children to be removed from their parents based on parental disability alone, no evidence of abuse or neglect necessary.

How is this fair to children, let alone their parents?

There are at least 4.1 million disabled parents in the United States. Most sources for this statistic are clear that it’s likely an underestimation; there are probably many more disabled parents who just aren’t being counted.

But, they do count – and many of their voices spoke at the White House Forum on the Civil Rights of Parents With Disabilities earlier this month.

I wasn’t at this event, but the White House’s live streaming technology is fantastic so I got to follow along. Here’s some of what I learned:

  • Most people are not aware that disabled parents’ civil rights are violated frequently.
  • A parent with a disability is simply that – a parent. every person enters parenthood equally unsure of what the future will bring or how to fully care for their children.
  • Disabled people are used to figuring out how they can make something happen – while the rest of the world is telling us we can’t do that thing. (Moral of the story? Disabled people are going to keep creating families.)
  • The ADA (Americans With Disabilities Act) does a lot to protect parents with disabilities, since it requires systems like social services and family court to provide accomodations for equl access. It’s these systems, governed by individual states, that are violating the civil rights of parents with disabilities by not upholding the federal laws.
  • People with disabilities sometimes stay in bad or dangerous relationships because they know they could lose custody of their children if they leave or divorce their partner. Disability can be used as a weapon in a custody hearing; in states where a parent’s disability can be used as the only reason for removing their children, a nondisabled parent can simply point out the disability of the other parent and win custody of the children. Ignorance about disability means that child welfare workers and family court personnel don’t make a routine out of investigating whether the disabled parent is abusing or neglecting the children in any way before deciding they shouldn’t get custody.
  • Disabled parents often learn the most from each other. Frequently disabled people will turn to professionals – therapists, doctors, social workers – when looking for information on starting a family; these professionals usually don’t have the knowledge to help or advise them.
  • Disabled parents and caregivers need: More education for healthcare, social service, and legal professionals to prevent cases like this one, and more respect and acceptance from the general public to get people to think twice about staring at a blind mother walking her child to school and taking pictures of mother and child without permission.

For more comments about the forum, see the #PWDParents hashtag on Twitter.

There’s only been one panel archived so far. I’m really, really hoping the other panels were recorded and that they’ll be posted some time soon. There was a lot of important material that people need access to, a lot of voices getting a public platform for the first time.

Many people shared stories about ignorance and discrimination towards disabled parents. The fact that disabled parents were at the White House talking about their livs, and insisting on better treatment is exciting and amazing. It’s inspiring – as in inspiring to watch change being created, to hear voices of disabled people being given authority.

But, (and there’s usually a but, isn’t there?) I kept wondering about the voices we weren’t hearing.

Where were the voices of teen parents with disabilities, who will usually face double discrimination, assumed to be incompetent as parents based on their disability and their age?

Where were the voices of disabled parents living in poverty, who couldn’t have afforded to get to the forum, even if they’d wanted to? The unemployment rate for disabled people in the United States is twice that for nondisabled folks.

Where were the voices of disabled parents of colour, including First Nations folks?

According to Rocking the Cradle: “13.9 percent of American Indian/Alaska Native parents and 8.8 percent of African American parents have a disability.” Six percent of white parents are disabled.

The disabled parenting awareness and advocacy movement doesn’t reflect these statistics at all. The movement, as a whole, is very, very white.

As a white woman, and as a non-parent (that’s a word, yes?), I don’t have the authority to say if, or how, the needs and experiences of disabled parents of colour differ from those of disabled white parents. I know, from a personal conversation, that at least one black disabled mom thinks that important issues and stories from people of colour are being left out of these conversations. I also know that parenting and family, in general, can be complicated for many First Nations folks, because of the all-too-recent history of residential schooling. I know that “racism in the form of slavery and Jim Crow forms fully 83 percent” United States history and that this racism has huge and harsh effects on black children an their families. I know that being a member of more than one minority often makes people more vulnerable, which is why we need to actively make sure that people are given the opportunities to represent themselves, and why we need to remember that the stories we hear aren’t usually the only stories that need to be told.

What do we need to do to bring more voices, more perspectives, more experiences to the disability and parenting table? What do we need to do to give those folks’ experiences and voices equal weight once at that table?

The other missing voices at the White House forum were those of disabled parents’ children.

After all, this conversation is as much about children’s rights as it is about the right of disabled people to start and keep their families. As one panelist (and I wish I knew who it was, because she deserves to be publicly credited) said:

Children deserve to know that their families aren’t going to be ripped apart.

Further Reading

children of Disable parents Speak