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.

****

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?

Jul 162015
 

I published this interview with Joan Price on another blog more than three years ago. Since then, I’ve met Joan several times, and she’s just as funny and smart in person.

Joan’s approach to sex and sexuality is a perfect fit here at Ready, Sexy, Able.

Not all the changes seniors go through will be related to disability, and people with disabilities are all ages. But I think there are similarities in the kinds of discussions seniors and disabled people have about sexuality and relationships – conversations about how, yes, we really are intrested in and able to do sexy things, and no, our sexiness or our interest in sexuality really isn’t gross.

***

Joan Price JoanPrice.com calls herself an “advocate for ageless sexuality”. She is the author of Naked
at Our Age: Talking Out Loud About Senior Sex
(Seal Press, 2011), Better
Than I Ever Expected: Straight Talk About Sex After Sixty
(Seal Press, 2006), and several books about health and fitness, including The
Anytime, Anywhere Exercise Book: 300+ quick and easy exercises you can do whenever you want!
! Joan also speaks professionally about senior sex and about fitness. Visit Joan’s award-winning blog about sex and aging at Naked At Our Age. Joan lives in Sebastopol, California, where she teaches contemporary line dancing – which she calls “the most fun you can have with both feet on the floor.”

How did Joan start writing and speaking about senior sex? For fifteen years, Joan was a widely published health and fitness writer. Then at 57, after decades of single life, she fell deeply in love with artist Robert Rice, who was then 64. Their love affair was profound, joyful, and extremely spicy. Their passion, in contrast to society’s view of older people as sexless, led Joan at age 61 to write Better Than I Ever Expected: Straight Talk about Sex After Sixty (Seal Press, 2006) to celebrate the delights of older-life sexuality.
read more about Joan

You can also watch Joan talk about senior sex here!

A few months ago, I sat in on a phone interview with Joan,and found her one of the most personable, articulate, and delightful people I’ve ever virtually met. Her comppassionate but no-nonsense approach to sexuality is refreshing. Joan was kind enough to answer a few questions so I can share a little of her wisdom with you. Thank you Joan!

R.M. You’ve done a lot of things in your life, most of them relating to education in one way or another. I’m particularly interested in how your experience as a fitness professional and a sexuality educator interconnect. Do you think they do?

J.P. Yes, on many levels. bif we feel like we’re “in” our bodies, feeling the joy of movement and the way our muscles work, we enjoy both sex and exercise more. Physiologically, exercise increases blood flow not only to the muscles and the brain, but also to the genitals, enhancing arousal and sensation. Emotionally, the better we feel about our bodies, the more sensual and sexual we are able to be. And at our age, knowing we’re treating our bodies well will let us enjoy them more, overlooking wrinkles — I hope!
Also physical exercise is great foreplay! Robert and I always made time for walking or dancing as part of our foreplay. By the time we embraced in bed, we were already in sync with each other’s bodies and our own.

R.M. What are the three most important things you’d like seniors to know about their sexuality?
J.P. 1. Our youth-oriented society’s view of seniors who enjoy sex as icky, weird, pathetic, or ludicrous is wrong, wrong, wrong! Our sexuality can be pleasurable and joyful throughout our lives.

2. If something emotional or physical is interfering with your enjoyment of your sexuality, there are solutions available! That’s why I wrote Naked at Our Age: Talking Out Loud about Senior Sex, because so many of us just accept our changes as inevitable, unchangeable, and too embarrassing to seek help for – and don’t know that solutions exist that can totally change our experience.

3. We as seniors need to talk out loud about our sexuality. That’s the way we can change both society’s view and enrich our own enjoyment by seeking information, learning what’s possible, and sharing that knowledge.

R.M. I notice that you use the terms “senior sex” and “ageless sexuality.” What would you particularly like younger people to know about sex and aging.

J.P. I know it’s part of youth to believe you’ll never be old, never be wrinkly or arthritic or have saggy skin, never fall out of love or lose a partner to cancer – but this all happens! The best “sex insurance” that a young person can have for a sexually gratifying older life is to learn about the changes, listen to elders about their experiences, and embrace older people who are willing to share with you. It’s a sign of deep maturity to welcome a dialogue with elders, and emotionally enriching, too.

R.M. …and if you could say a few words about what is coming up next for you, what your current projects are, that would be terrific!

J.P. Woo hoo! I’m very excited about my new project, editing an anthology of senior erotica! This will be a collection of stories and memoir essays by writers over fifty, featuring steamy characters over fifty. Think about it – why is erotica almost always about young, hot bodies? Is there an upper age limit to being sexy, wanting sex, caring about sex? I say no. Please see my Call for Submissions.

Update: Ageless Erotica was published in 2013. It’s available in paperback and e-book.

Further Reading

Better Than I Ever Expected: Straight Talk About Sex After Sixty and Naked at Our Age: Talking Out Loud About Senior Sex are both availble in audio.

Joan’s latest book The Ultimate Guide to Sex After Fifty: How to Maintain ? or Regain ? a Spicy, Satisfying Sex Life is available in paperback, e-book, and audio

Jun 172015
 

This was originally written and published in late August, 2014 after I attended Jessica Naslund’s workshop, Healthy Relationships and Sexuality: A Systemic Approach to Supporting People with Cognitive Disabilities, at The Woodhull Sexual Freedom Summit.

Workshop description:

As practitioners and educators we are guiding individuals through their unique sexual journeys. People with cognitive disabilities have a challenging journey ahead of them because of barriers to education that are perpetuated by myths about how these individuals relate in society. It is our job as advocates to understand the barriers and work to push through them so that everyone has access to the same pertinent information and resources. People with cognitive disabilities require more multi-dimensional approaches to capture and retain comprehensive sexuality education material. These approaches may include visual or auditory media, hands on activities, developing a support system for the individual, and a more team approach to teaching with caregivers and support providers.

Words can’t quite describe how awesome this workshop was.

Jessica Naslund is brilliant—enthusiastic, passionate, and best of all she doesn’t just talk the talk, but walks the walk every single day of her working life.

As a social worker, Jessica works with, as she puts it, a population no one wants to talk about—intellectually and developmentally disabled people—around an issue no one wants to talk about—sexuality.

Jessica started by asking workshop participants what words and phrases come to mind when we think about sex and sexuality. We then shared words describing thoughts and feelings around sex and sexuality and people with intellectual disabilities. The two lists didn’t look at all alike. The first one included a variety of feelings and experiences, most of them positive; the second, full of limits and lack of possibilities, was positively dreary!

We should not be ignoring the lives of people with intellectual disabilities, or the reality that sex and sexuality can be, and usually are, just as much a part of these folks’ lives as they are for anyone else.

It shouldn’t have to be said, but…

People with developmental or intellectual disabilities do have sexualities – sexual feelings, experiences, desires, vulnerabilities. people with developmental or intellectual disabilities are also at alarmingly increased risk (relative to the general population) of experiencing many kinds of abuse, including sexual abuse.
This is, to put it mildly, not okay.

Jessica’s work focuses on teaching people with developmental or intellectual disabilities the positive as well as risky parts of sexuality. For example, a person can and should be taught about dating and sexual harassment, or happy feelings and bad feelings when someone touches them and they don’t want that touch. It’s really hard, if not impossible, for people to know something is bad, if they don’t also learn about the good things, and that it’s okay to have those feel-good feelings in their bodies when they touch themselves or when they think about someone they have a crush on.

Dave Hingsburger’s Ring of Safety takes this sexuality-affirming and humanity-affirming approach to preventing abuse. I had a momentary “squee!” moment when Jessica mentioned Dave’s work, as reading his article A Witness to Courage was pivotal in catalyzing my commitment to giving a voice to disabled people and our sexualities.

The Ring of Safety incorporates several components, including individualized sex and relationship education, awareness of privacy, and the ability to non-comply—to say no. People often don’t know how to teach people with intellectual or developmental disabilities about sex and relationships, or don’t think it’s important to do so. But, if someone doesn’t know what their body parts are called, how can they convey whether those parts are feeling good or bad. If someone doesn’t know what privacy is, or what it feels like, they can’t tell if that privacy is being invaded. Things many of us take for granted, such as getting to spend time alone, or being able to use the toilet and shower by ourselves, are luxuries virtually unknown to many. Jessica shared a story of one person who was considered such a threat to himself and others that he was never, ever allowed to be alone. His behavior changed markedly when he was given the chance to be alone in a familiar room for fifteen minutes at a time.

People with developmental or intellectual disabilities are often in very regimented treatment and care systems (with tight schedules and strict rules) where they aren’t given privacy, even to just be alone in a room listening to music or watching TV for a while, and where they aren’t allowed to say “no!” even to simple things. Too often staff in these environments are rushed or overworked, and don’t feel like they have the time for the negotiation process of someone saying “no” to something the staff member thinks needs to be done, such as taking a shower or finishing a snack.

Jessica quoted Hingsburger as saying: “If you can’t say no to peas, you can’t say no to penis.”

When someone indicates they don’t want to eat peas, no matter what their disabilities are, that needs to be respected. We can’t expect someone to be able to protect themselves from being hurt, or tell a trusted person that they were hurt, if their preferences around what they do, and what happens to their bodies, have never been listened to or respected before.

It’s important that intellectually disabled people be given the opportunity to make choices. Even when something needs to happen or the person with an intellectual disability isn’t able to indicate what their choice is, talking to them, asking permission before something is done (for example: “Can I dress you now? Instead of “Okay, time to dress you.”) goes a long way towards restoring someone’s humanity, and, ultimately, helping to keep them safe.

If people with intellectual disabilities don’t know what healthy is, they won’t know what unhealthy is. This includes both speaking up if they’re being abused, and learning how to not be abusive. The incidence of abuse among developmentally and intellectually disabled people isn’t just from caregivers, but from intellectually and developmentally disabled people themselves. Very often, this is rooted in people not understanding boundaries. Even when boundaries – such as good touch/bad touch – are taught, time isn’t usually taken to teach about emotions in a way folks with different intellectual disabilities can understand. For example, educators can teach not only “don’t hit” but “this is what someone looks like when they’re uncomfortable, or scared, or have just been hit and don’t like it at all.”

Many people with intellectual or developmental disabilities need new concepts spelled out really concretely.
This is why it’s important to teach about body parts, about feelings, and about relationships. Many people with developmental disabilities have trouble reading social cues, so when they learn about bodies and relationships, they need their educators to talk very specifically about what people are feeling when they look or act a certain way. They don’t know they’re making people uncomfortable, or that they’re about to get in trouble for assault or harassment. Or, they don’t know how to convey amorous feelings without overwhelming the person they have those feelings for (E.G. Learning how many voice mails it’s acceptable to leave for a girlfriend or crush object). But, using the right learning tools for each individual, folks can learn what cues from other people mean – how to use the skills they have to judge if what they’re doing is okay.

*

The reality that’s shown itself over and over again is that when people know what their body parts are, and understand privacy, they start to disclose abuse. Residential and day programs where this kind of education is done have a higher reporting rate, but that doesn’t mean they have a higher incidence rate. It means people have been given some of their power back, and the tools to communicate what’s happening to them or what’s happened to them in the past.

Jessica advocates using multiple systems approaches- for example, recognizing that there are multiple ways people learn, and hence multiple ways people teach, and also that teaching and supporting people means working with everyone, from healthcare providers, to group home staff, to educators, to families.

She offered this example of what this collaboration reveals: People who are not verbal, or who have a limited vocabulary, often express their feelings through their body language and behavior. How frequently or intensely someone stims can indicate how that person is feeling. People who see them every day, support staff and family, are the best people to ask about which behaviours or expressions mean excitement, nervousness, happiness, stress, etc. I particularly like this approach because it validates family members, not the professionals who come in for “sessions” to work with them, as experts. Family members often end up doing the majority of caregiving, and the work of this caregiving, plus the constant interaction with professionals who are often telling them what to do or not do after spending relatively little time with them, can take their power and sense of confidence (both personal, and in the care they’re providing) away.

Another part of this approach is finding a teaching method that works for each individual. Including using pictures to tell a story or diagram the steps for something, like a visit to the doctor or what it takes to ask someone out and go on a date.

Jessica gave this example. People with Down Syndrome aren’t any more affectionate than the general population—which is to say that some might be very affectionate, based on their personality, but it’s not a feature of the syndrome. They’re encouraged—taught—to express affection to everyone, probably because people are drawn to their open manner and frequently happy disposition. Hugging everyone isn’t culturally appropriate behaviour, though, and not teaching people boundaries deprives them of knowing when their boundaries have been violated or when they’re crossing someone else’s boundaries. There’s a need to teach all people which forms of interaction are okay In which situations. Jessica says she will often use pictures to diagram different interaction circles—e.g. the mail carrier is in the wave circle (we just wave if we see her), doctor is in the handshake circle, aunt is in the hug circle, etc.

As I write this, I think about how important it is to maintain consistency. A doctor who has known a developmentally disabled patient for a long time, may feel very fond of this patient, and may interact with them in ways they don’t interact with other patients. I think it’s important for them, in this case, to express fondness in other ways, such as through voice, body language, level of interest in their lives, and so on, to reinforce the message that while it’s a friendly relationship, it’s still a doctor-patient relationship.

Relatedly, we need to remember to treat people according to their chronological age, not their presumed mental age. If someone is thirty-three, they should not be treated as if they’re ten. This includes how we talk to them, what activities they’re encouraged to get involved in, and what information (about anything, but especially about sex and relationships) we think they’re supposed to have. I’ve often thought that judging what someone understands, or even how they perceive the world, on their verbal skills is misguided. Jessica agrees, saying that we really can never know exactly how people perceive or understand things because we’re not in their heads.

This presentation taught me a lot of useful information I hadn’t known —as well as gave me new language for things I already knew—but it also made me reevaluate the way I understand people with intellectual and developmental disabilities. Jessica presented several scenarios for us to talk through, both to puzzle out what might be happening and to brainstorm solutions. In working through the following scenario, I discovered a flaw in my thinking:

A young woman attending a day program spends a lot of time in the bathroom, to the point where she’d rather be in the bathroom than participating in the activities. Her support staff have also noticed redness around her vulva, and that she’s been rubbing her vulva a lot.

We might presume that the redness, and the self-isolating behavior, indicates that she’s being sexually abused. Or, she could be masturbating to the point of irritation. Redness could mean that she needs lube, or that she’s not reaching orgasm and is rubbing herself more vigorously to try to get to the ultimate feel-good part—which could be why she’s wanting to hide away in the bathroom. Or, redness could mean an infection, yeast or bacterial, and she’s staying in the bathroom because she doesn’t feel good. Or… It could be for any number of emotional or physical reasons.

So, my first step towards a solution was to have this young woman visit a doctor. But no, there should be a step before that, a step that could help us narrow down the possibilities – a step that will center the young woman, not our beliefs about her. As with any situation, the young woman is the expert on what is going on with her own body; the only thing that differs is the way we access her own expertise.

That was the flaw in my thinking, not questioning whether and how we could get information from the young woman herself.

The operative question here, and one that only she can answer, is “how does your vagina feel? Happy, sad, itchy, mad, etc.” depending on her cognitive needs, the discussion might involve looking at or drawing pictures, or speaking words, or pointing at words, or illustrating with dolls, or any other communication system that works for that individual. Sure, a doctor’s visit is probably in order too, but how much better it would be if that appointment was arranged with the input of the woman herself.

Sometimes, the hardest part to reinforce is that people with developmental disabilities do have sexualities, and those sexualities should be respected.

Even when everything else is in place, the sex ed, the education about privacy, the understanding of a person’s communication style, the permission to noncomply and leave those pesky peas on their plate – people still don’t have the opportunity to express healthy sexuality.

Many group homes still frown on, and even forbid, their residents dating, pursuing relationships, and engaging in sexual activity with others. Sometimes, the response when a resident is found masturbating is anger, rather than withdrawing and giving privacy, or politely and firmly explaining that you need to do that in your room, not in the TV room.”

If we want to recognize people with developmental and intellectual disabilities as human beings, we need to recognize all the things that make them human.