This piece on disability and sexual assault was published in 2010, long before hashtag movements and mainstream coverage. It’s 2018, and, honestly, I don’t feel as if we’ve made any sort of significant cultural shift.
Each April, we observe Sexual Assault Awareness Month. Every year we learn about at least one more documentary, local or regional anti-violence organization, or awareness campaign aimed at stopping the nightmare of sexual assault and abuse, or at helping victims of violence pick up the pieces
We’re churning out “awareness” essays and videos until they’re foaming up around our ears, and I have to ask: “Is it making a difference?”
Is there any less sexualized violence?
Are disabled folks facing any less ableism (read: disbelief, dismissal, lack of accessible services) when they seek help after an assault?
What does it mean to empower people if the basic culture permitting sexualized violence hasn’t changed?
I’m a disabled woman with a lot of disabled friends, and I’m tired of feeling fear for them.
I’m a disabled woman with a lot of disabled friends, and I’m tired of my heart hurting because most of them have abuse lurking in their pasts – and for all the friends who’ve shared with me, there are (probably) just as many who haven’t.
I mine the Internet for pieces like the one linked below, and I feel overwhelmed by the sameness of it all. It feels like nothing is changing, except that we have more data to link to, more essays and opinion pieces to show us the variety of chaotic things that happen in a world that sees disability as a failing, or at least as an insurmountable difference, a world that is so broken around sexuality and sexual expression that I don’t know if we’ll ever succeed in turning the tide away from abuse of power. At least, maybe, the sheer numbers of stories supply the data disbelievers always ask for, the “proof” that sexualized violence is a problem, that disabled folks are at horrible risk of being assaulted…
We’re smack dab in the middle of Sexual Assault Awareness Month and I look at all the data, trying to find the progress, and wind up just shaking my head.
At least we now give voice to sexual victimization being something that touches people of all genders, not just women.
Sexual healthcare is vital for anyone and everyone who’s sexually active, but, between inadequate research, inaccesible buildings and equipment, inexperienced and insensitive healthcare providers, and a whole bunch of other factors, most people with disabilities aren’t getting their sexual healthcare needs met. Before I read this article from the Disability Visibility Project, I knew that logically. It’s my job to know it.
Still, after reading, I’m left without words at the level of trauma and incompetence the writer’s doctors subjected her to. She wound up having major surgery that she might not have needed had she had the same level of access to preventive gynecological care that most nondisabled folks do. I’ll let you read the rest of her story yourself. I salute this woman’s bravery! She’s been through way too much!
And, she’s not the only one. Folks of all genders face these kinds of barriers to healthcare everyday. Biases against LGBQ or transgender folks, or racist attitudes or behaviours, or stigmas against folks who are homeless or unemployed – it all happens within the healthcare system (as well as everywhere else), and can mean the difference between getting quality or lackluster care, or even getting care at all.
Every day, people with disabilities aren’t getting the healthcare they need because the healthcare system isn’t set up to serve everyone’s physical needs, and providers aren’t being trained to recognize their own unconscious biases against disability so they can treat disabled patients with proficiency, and respect.
Ad our culture’s shame around anything sex-related, and prevailing beliefs that disabled people aren’t (or shouldn’t be) sexual, into the mix, and we have a sexual and reproductive healthcare system that is basically broken for people with disabilities.
We need to change this, to ensure that researchers and clinicians know about currently availableresources, to inspire researchers to investigate best gynecological practices for all bodies, to make sure healthcare providers have training and experience before they leave school, again with all minds and bodies.
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:
(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.
(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.
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.
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?
Peer Advocate’s Experience of Deaf Women’s Disclosure of Sexual Assault
Noelle Opsahl, Master of Education of the Deaf (M.E.D.)
Gallaudet University
First, a cool thing. Noelle, the presenter,told us that this was the first time she’d given this presentation in English, though she’s presented it in ASL (American Sign Language) several times. Noelle is hearing, and English is her first language. Given that ASL wasn’t even considered a language until a handful of decades ago, it hits all sorts of awesomeness buttons for me that this work was presented through, and grew through, this language.
Noelle gave the audience a brief outline of Deaf culture, hearing privilege, and “Big D” versus “Little d” deaf community.
It’s a big thing when anyone discloses they’ve been sexually assaulted. whether they’re telling the police, a friend, a family member, sometimes even their own diary. So many emotions can come up, including (but never limited to) fear, denial, shame, embarrassment, relief, back to fear, and more.
How someone reacts to this disclosure can play a big part in how or whether the person who experienced the violence feels safe enough to ask for practical help, mental health services, and anything else they need to help their healing process and help them stay safe.
After several D/deaf people disclosed their experiences of sexual violence to her during her stint as a peace Corps volunteer in Kenya, Noelle Opsahl decided to study D/deaf people’s experiences of disclosing sexual assault or intimate partner violence, particularly to hearing people.
She’s in the midst of her research now, so her presentation focussed on teaching us the basics of D/deaf community and culture, and the nature of sexualized and intimate partner violence in the Deaf community.
The Deaf community has a long history and culture. It (the community) is mostly made up of people who grew up Deaf, and communicate primarily (or even exclusively) through ASL. The community is small, tightly-knit, has cultural norms and taboos that are different from those in English-speaking American culture. (There are, obviously, Deaf communities around the world, all speaking different forms of sign, so to keep things simple, and because its the community Noelle spoke about most in her presentation, I’m talking about folks in the United States.)
No matter where in the U.S. members of the deaf community live, they’re socially and culturally connected, and often know each other, or have heard of each other.
When D/deaf people disclose that they’ve experienced sexual assault or domestic violence, they face additional barriers that hearing folks don’t face. If they’re disclosing to a therapist, doctor, police officer or other helping or law enforcement professional, there will often be a third person in the room – the interpreter. Disclosing to an interpreter, even with confidentiality agreements interpreters sign as part of their work, could feel really vulnerable, and, I imagine, could make disclosing feel like more work than it’s worth.
Or, if there is no interpreter, the Deaf person and the hearing professional might be communicating through writing. Some members of the Deaf community are not fluent in English reading and writing, so this is not going to be the best way for them to get or give information, let alone feel safe and heard around something vulnerable. I was surprised (though I guess I really shouldn’t be) to learn that hearing professionals, such as doctors or police officers, will sometimes, instead of finding an ASL interpreter to help them communicate with a D/deaf person coming to them for treatment or to report a crime, will instead turn to, say, another person in their office who just happens to have a basic knowledge of finger spelling. (Finger-spelling is only a small part of sign language – same as being able to spell out the letters to a word is only a small part of any spoken language.) Noelle made it clear: Don’t do this for important conversations, just don’t. I’m imagining that doing this would be something akin to asking a colleague who’s preparing for a vacation to Italy by reading an Italian phrase book for tourists to come translate for a patient or victim who speaks only Italian.
Disclosing to a hearing person can also be complicated if the person who typically acts as the survivor’s interpreter is also the abuser. This is one of the ways abusers (particularly, but not only, hearing abusers) will isolate their D/deaf victims.
DeafHope, an organization providing culturally specific education and services to D/deaf people, has identified specific behaviours common to abuse by and of d/deaf people, including:
Abuser says no one will believe the victim because they (the abuser) is well-known and respected in the deaf community.
Abuser justifies invasions of privacy (such as routinely reading victim’s texts and emails without permission) by saying this is culturally acceptable in the Deaf community.
Hearing abuser tells children not to use ASL to communicate with their D/deaf parent.
I think this information is especially important for folks working in the sexual assault and domestic violence response fields because much of it might not be recognized as abuse without some knowledge of Deaf culture. Someone persistently signing in someone’s personal space, for example, might simply be perceived by a hearing person as rude; or, the hearing person, with no knowledge of sign language, might not even know that signing in someone’s personal space signifies anger.
The full DeafHope Power and Control Wheel is here.
Both of these wheels use gendered language, with the man as the abuser and presuming the woman is the abused partner. While man-to-woman intimate partner violence is prevalent, and has gotten the most research and intervention resources, anyone of any gender can abuse or be abused in a relationship. I really would like to see more intimate partner violence research and intervention organizations using gender-neutral language so that more people will feel safe to reach out for help.
Noelle’s presentation was full of information, and I’m excited to see where her research goes.
I’m also really glad that her work was included at a disability conference, since the Deaf community and disability community usually see themselves as having different goals. (Many people in the Deaf community do not think of deafness as a disability.)
One more thing I should mention: Noelle was clear that she is a hearing person, that she has advantages and power as a hearing person, and that, as a researcher, and as someone who spends a lot of time with the deaf community, she’s in no way speaking for D/deaf people. I’m not the best judge since I’m not part of the Deaf community, but I think she succeeds in this. Her presentation was educational, without trying to explain what it feels like to be D/def or part of the Deaf community and without making generalizations about anyone’s experiences.
Keynote Presentation: Harilyn Rousso
Harilyn is truly an elder – an experienced and wise person – in both the disability rights and feminist communities. She has my endless admiration for all the work she’s done, and the honesty she shows in her stories. Hearing her speak, and read from her memoir, was a pleasure, and an education.
Many of the stories in Harilyn’s memoir Don’t Call Me Inspirational: A Disabled Feminist Talks Back echo the themes of both movements – moving away from helplessness towards independence, expressing sexuality, and building positive self-esteem and body image.
Don’t Call Me Inspirational puts words to the experiences many of us have had growing into adulthood with physical disabilities. Being blind, learning to drive was never on the table for me, but Harilyn’s words in Driving High feel so familiar. Deciding to take this rite of passage was an internal conflict, being tugged between being coaxed to learn by her mother who knew how crucial it would be for her independence, hearing her doctor say she’d be a hazard to other drivers, experiencing her own doubts:
I, too, had doubts about my driving, but these had little to do with my physical limitations. The image of myself as a driver was incongruous with some internal experience I had of myself of needing to be cared for and directed, of not being able to be in the driver’s seat of my own life.
And these words, from On Not Looking in the Mirror lodged in my mind as soon as I heard them, and have stayed with me: “I buy a full-length mirror, not to please my mother–although she would be pleased–not to fix myself but to find myself.”
The reading was followed by a question-and-answer session.
When an audience member asked how she’s managed work-life balance with everything she’s accomplished, harilyn laughed, and pointed out that she’s done all this work over decades. She shared that she paces herself, that she’s stopped trying to prove anything to anyone. Many disabled people find themselves in the position of feeling like they have to prove themselves by doing everything mor and better than other people – playing “supercrip” as Harilyn put it.
She also had some solid advice for professionals about addressing their own biases around disability, as well as around race, class, and other marginalized experiences. Therapists and other helping professionals, Harilyn told us, like to think they don’t have biases and assumptions, but they do. They can’t do their work well if they don’t face and work through these assumptions. She also encouraged helping professionals to keep listening, and to be comfortable with saying that they don’t have all the answers. Harilyn didn’t mention this, but I’d like to add that many people have strong personal fears about disability and illness, so it’s especially important for helping professionals to understand their own fears so they don’t project them onto disabled patients or clients.
UP Next: Day 3: The hypersexualization of women diagnosed with bipolr disorder, closing “Town Hall” session, and my own thoughts about how to use what I’ve learned.
A Love Letter to My Neurotypical Husband, From Your Autistic Wife
People often say marriage (or any long-term romantic relationship) is about compromise. I think it’s about understanding, showing that understanding, growing with a partner. This woman and her husband don’t – can’t – just go through the motions of a conventional romantic partnership.
Before you, I knew in my marrow that I would never be suited for a conventional love relationship. How could a woman who exists mostly in her own inner world, so tightly controlled, ever share a life with another person — until “death do us part,” no less? Every attempt I’d ever made at normal had failed miserably. I am too complicated, too particular, too cerebral.
I am much too much of everything. But you don’t seem to mind at all.
Cocks & Bonds: That Time I Considered Hiring a Sex Worker
Deeply honest read from Andrew of Deliciously Disabled about struggling with his lack of choices for getting his sexual needs met.
If I am to look at the last several months with any sincerity, I am not okay with the way things have gone, by way of my sexual access. I have been really upset that the reality of my life as a man with disabilities; plagued by issues of location, attendant care needs and blissful ignorance or lack of awareness on the part of my community of fellow Queers, means that I have gone almost a year without an affectionately sensual touch from another man.
Within these long nine months, a time longer than many celebrity couples have lasted, I have started to consider the fact that I may have to hire a sex worker in order for my sexual needs (and at this point, it is a need much more than a want) to be met. I have been toying with this idea for some time now.
JoEllen Notte, also known as the Redhead Bedhead wanted to know more about people’s experiences navigating their sexuality, depression diagnoses, and depression treatments. So, she ran an online survey and conducted interviews. here, she shares her findings, and shows us how sexuality can afect depression, how depression can affect sexuality, and what people can do about it.
Imagine for a moment that I took away your ability to enjoy sex. It’s just gone. Now in order to get it back, you would have to declare that you belong to two categories of people who are regularly stigmatized in pop culture. While you are dealing with this, you may also be experiencing feelings of worthlessness, guilt, hopelessness, lethargy, anxiety, and the inability to concentrate. If you can get past all that and reach out for help, there’s a big chance no one will do anything. They may not even believe you.
Welcome to the world of a woman dealing with the sexual side effects of depression and its treatment.
Focus on autism must broaden to include non-binary genders
The gender binary, thinking of men and women as opposites, can be even more harmful when it comes to autistic people. I especially appreciate The point Emily Brooks makes here about how autistic people can be especially subject to gender role expectations; these expectations can be reinforced, sometimes literally over and over again through life skills (things you need to do to take care of yourself on a daily basis) and social skills training.
As a non-binary queer person, I’m sad that both the LGBTQ and the autism communities don’t offer more inclusive programming. … ’ The pointed focus on the differences between men and women with autism — most of which are socially created — leaves out people like me, who don’t adhere to a binary gender identity. … Queer environments don’t often account for our sensory processing issues or social differences, whereas autism services don’t often recognize that we may identify beyond the gender binary or have queer relationships. Shifting the focus from the tired narratives of delayed diagnosis and sex differences can help the autism community take responsibility for improving our day-to-day quality of life, whatever our age at diagnosis or gender identity.
calls for overhauling the nurse training system in Zimbabwe to better educate healthcare providers about the needs and experiences of their disabled patients. Lack of awareness, physically inaccessible clinics, and outright refusal to provide needed treatment all mean that disabled people often don’t get the healthcare, or treatment for illness or injuries from abuse, that they need.
In Zimbabwe, women and girls make the largest number of people who are marginalised and abused in society. The situation becomes a double tragedy when
that women or girl is living with disability, of which girls and women living with disabilities.
Persons living with disabilities – those who have long-term physical, mental, intellectual, or sensory impairments which, in interaction with various barriers,
may hinder their full and effective participation in society on an equal basis with others – have the same sexual and reproductive health needs as other
people. Yet, they are abused and often face barriers to information and services. Further, the ignorance and attitudes of society and individuals, including
health-care providers, raise most of these barriers – not the disabilities themselves, a fact supported by the National Survey on Disability: Key Findings
Report (2013).
The questions and discussion with the audience went even better. There was a lot of participation, all of which was positive. A majority of the conversation
focused on the medical and health aspect of sex and disability. There were a lot of helpful questions and comments about how to talk to doctors about sex
related topics, and some of the advice came from medical professionals themselves. The audience was also very helpful in sharing their experiences and
opinions on dating a disabled person vs. just a sexual experience.
The good folks at Scarleteen have hit the nail on the head again with some super on-target advice and reassurance about identity and sexual orientation. I love the message here that we’re all always okay, even if we don’t always know who we are or what we want. Scarleteen also doesn’t shy away from acknowledging that figuring out what we want, and negotiating relationships with other people, is hard stuff.
If you do decide that you’re bi or pan or something other than gay? That doesn’t invalidate the conclusion your eleven-year-old self came to. It’s a cliche in the sex ed world to say that sexuality is fluid, but we keep repeating it for the simple reason that, for so many people it is fluid. Eleven-year-old you chose an identity based on the information you had at the time. Your friend is providing the you of now with some new data to add to the equation. If you re-evaluate and decide “nope, still gay?” That’s as okay as deciding you’re something else. There is no right answer here.
#JustActNormally – A Response to Cerebral Palsy Foundation’s #JustSayHi Campaign
Emily Ladau explains, with simple words and lots of feeling, just exactly why The “Just Say Hi” campaign isn’t going to help disabled people.
“Just Say Hi” implies that if you see someone who appears to have a disability, you should go up to them and say hello. Although this is trying to convey that you should treat disabled people as you would non-disabled people, the opposite message comes through. No one’s ever created a “Just Say Hi to Every Single Person You See” campaign. So, isn’t the whole point of the campaign contradicted by the fact that it exists in the first place?
Also, consider this: if you swapped out disability for any other appearance-related identifier, how would this campaign go over? #JustSayHi to Asian people. #JustSayHi to people with red hair. #JustSayHi to people who look like they weigh more than you do.
“What’s wrong with you?” – a critique of the Medical Model of Disability
Here’s an approachable, conversational essay on different ways to look at the experience of being disabled. I particularly like how clearly the author reframes “What’s wrong with you?” (a judgment) into “Why are you in a wheelchair?” (something much more direct). People are afraid to use disability words like wheelchair, blind, etc. They tend more often to ask why someone is “like that,” or, yes, what’s “wrong” with them. The downside of being so easy to understand, is that this author skips over many of the problems with the social model, which doesn’t, at least the way it was originally developed, include everyone. This post icludes a few of the reasons why. https://enabledisability.wordpress.com/2007/02/27/beyond-the-social-model-of-disability/
The medical and social models are at opposite ends of the spectrum of models, ideas, and experiences researchers and activists have explored to try to understand the role of disability in people’s livs> Lern more about other disability models here.
“What’s wrong with you?”
I get asked this question most days, occasionally prefaced with a “if you don’t mind me asking…” or a “no offense, but…”
More often than not, the asker of this question truly means no harm, and would probably be horrified to know the damage caused by their words. People are naturally curious, and etiquette and rudeness aside (it’s not very polite to demand personal information from a stranger) I am always willing to enlighten those who ask. *
However, I do take issue with that question. Not in what it seeks to ask, but the specific choice of words. “What is wrong with you?” To my mind, I’m afraid there is absolutely nothing at all wrong with me. In fact, as you’re asking, I happen to have really quite a nice life. I have loving parents, wonderful friends; I am well educated and well fed. I am proud of what I have achieved so far in life and am very excited about the future. There’s nothing at all wrong with me.
I may direct you to ask another question. “Why do you use a wheelchair?” The answer to that would be because I was born with a disability called Central Core Myopathy, which means I have very weak skeletal muscles and therefore cannot walk. That was a very different question, and probably the one you were intending to ask.
Can we all agree that asking random people on the street (or in the mall, or anywhere, really) about their sex life is just plain creepy?
People with disabilities are asked, much more often than you’d think, how, or if, we have sex. No, really, this happens all the time. If it’s not about sex directly, it’s something to do with relationship status. Maybe it’s random questions about whether you’re married, or about your dating life. Maybe it’s your server at the fancy restaurant assuming the person you’re sharing a romantic candlelight dinner with is “just” a friend, or worse yet, your brother or payed caregiver.
***
Honey, if they’re with me then they’re not looking for normal — and I don’t mean because I’m crippled. Because sex with me can mean any fetish, any request you’ve always been afraid to make, any position you can think of. Because sex with me can be watching porn together, reading erotica together, or preferably making our own of both…
As with anything both taboo and sexy, Internet news sources picked this up right away, with headlines like What It’s Like to Have Sex with a person With a Disability.
Kelsey’s sexuality is clearly broad and flexible, and she has the gift of a lovely voice and the art of creating words that grip us and won’t let go.
I know I’ll be going back to this video for inspiration -the sexy kind, not the inspiration porn kind.
But this doesn’t speak to all disabled people’s sexualities – and I doubt Kelsey means it to, since she named her poem My Body – even as it’s the perfect challenge to the idea that disability makes someone not-sexy and incapable of or uninterested in sex, or to the idea that “normal sex” – (whatever that is) – is impossible for disabled folks.
The lives of people with disabilities are so often boiled down to being about our disabilities alone, – usually because nondisabled folks can’t imagine how life with a disability would work – that the idea of grocery shopping, or getting dressed, or having sex with one’s partner become exciting or alien concepts nondisabled people want to learn about the way they’d learn about astronomy or the mating habits of giraffes.
There’s also the assumption that all of these life activities are controlled first and foremost by the disability – that disability changes everything. Newsflash: It doesn’t. We’re just as likely to swoon over cute puppy pictures (or stories for those of us who can’t see the pictures), have ridiculous laugh-fests with friends, or get frustrated over the rising costs of milk. The ways we get dressed – whether it’s how we know what colours we’re wearing or how we put on our underwear or tie our shoes – are just the ways we dress, not anything better, or worse, than dressing the “normal” way – because that way of dressing is normal for us.
***
“I want to learn more about accommodating people with disabilities if I’m going to have sex with them.”
This was one of the answers I got to a question on Twitter asking what people most wanted to learn about sex and disability.
Since it was sex we were talking about, I asked if this wasn’t actually more about pleasure than about accommodation. When I think about accommodation, at least when it’s related to disability, I think of Braille signs on elevator buttons, equal opportunity employment, or buses that announce stops and have wheelchair lifts – not sexual intimacy or X-rated play time.
It turned out this person was concerned about hurting a potential disabled partner if he didn’t understand how their disabled body worked.
Fair enough – but… We don’t know how anyone’s body works until they tell us, until we’ve spent enough time with it to learn what every little sound or wiggle means. It ultimately doesn’t matter what someone’s body does or doesn’t do; no “Sex and Disability 101” Or “Sexual Exploration for Everyone” workshop is going to be able to tell you how to have sex with them.
The fun, and fear, of sexy time with a new partner is the same regardless of ability. The challenges come up when we’re faced with things we’ve never encountered, and sometimes have never heard of.
Knowing something about different disabilities can take some of the mystery of disability out of the equation, and that’s a good thing. The more familiar words and realities like cerebral palsy, hemiplegia, degenerative retinal diseases, PTSD, etc, are, the less unfamiliar they’ll be to people, and the quicker they can get on with their everyday business, including getting it on with a new lover. It’s also a relief to disabled folks when people understand the basics of what we’re telling them, even if it’s as simple as knowing basic human anatomy.
Sure, there are general disability-related differences in romance and sex we can pretty much always assume to be true: A blind man can’t glance across the room and entice an alluring stranger with eye contact. A woman who uses a wheelchair to get around may, depending on the nature of her disability, need help in and out of the chair, with changing positions, with going to the bathroom after sex. A deaf person will likely want to leave the lights on so they can read a lover’s lips, watch body language, or do whatever they need to do to communicate while getting it on.
Understanding disability by studying WebMD and Wikipedia won’t help anyone learn a lovers’ body.
We want answers, and formulas, for sex, and for understanding disabilities, and there just aren’t formulas for understanding either, or both together.
No one’s limbs work the same way, no one’s brain chemicals do the same things, no one person likes exactly the same sexual activities in the same way.
Becoming an encyclopedia of disability and intimacy will only take anyone so far in growing a relationship with a disabled or nondisabled partner or playmate.
I don’t necessarily suggest conducting an interview with someone you want to have sex with – unless question-and-answer sessions light your erotic fire, and theirs – but discussing questions like the ones below can be a good place to start if you’re just not sure what to do with this playmate you find so hot:
What feels good to you?>
How do we have sex so I don’t hurt you?
I want (insert your deepest fantasy, or just what your body craves that day). What do you want?
***
I think the connection we need to keep making between disabled people and sexuality is our right to want sex, to think about sex, to be sexy and express our sexuality – or not to do any of those if we choose not to. For some people that includes the right to have sex, but for others it’s more about the right – and the responsibility – to live in a world that’s so often about sex appeal, and where so many interactions are expected to have sexual overtones.
We used to describe these attitudes towards disabled people’s sexualities as seeing people with disabilities as “asexual.”
Asexuality is, however, an actual identity or orientation. It’s not generally seen as an absence of sexuality, but as a way some individuals relate to their own sexualities or with the idea of sexuality in general.
Disabled people can, and do, identify as asexual, without that having anything to do with their disability.
I think highlighting the variability of disabled people’s sexualities is important, and sometimes overlooked.
We emphasize so much that disabled people are sexual beings, that we forget that we’re allowed to be lousy lovers, or to have sexual relationships that don’t work, or to have lovers who just don’t enjoy our sexiness without that making them narrow-minded, ableist jerks. We forget that having sexual rights also means we have the right to be lousy in bed, that we have the right not to shock others with our sexualities, that we have the right to be celibate by choice.
So many disabled people don’t get choices, though. They don’t get privacy, or say in who provides their personal care, or who knows about their personal business. The idea that disabled folks who need physical assistance with daily personal-care needs (dressing, bathing, caring for their home, etc.) could also get assistance (without judgment) with the parts of their sexual and intimate lives they physically can’t negotiate themselves is deeplycomplicated.
There are no easy answers – so much of what I’ve brought up here would, and has, fill books – and there are no quick fixes for making mass changes to attitudes about disability, or sex, or disabled people expressing our sexualities. We’re talking about changing generations of attitudes about two experiences people hold so much fear around in general.
What do you do when your abuser is also your care provider, someone who bathes you, or dresses you, or whose assistance you need if you want to leave the house or communicate with other people? What do you do if people constantly tell you not only how good a person your abuser is, but how courageous and wonderful they are for helping you? What do you do when your abuser doesn’t treat you like a human being, but neither does much of the rest of the world?
Even though people with disabilities are statistically more likely to experience relationship violence than nondisabled people there’s virtually nothing about what disabled people experience included in anti-domestic violence education, fundraising and awareness campaigns, or other forms of activism. (And considering that what we know about the prevalence of relationship violence for people of all abilities is only the tip of the iceberg, that’s scary.)
It’s not so surprising though, that disabled people are mostly absent from awareness campaigns, when we consider that disabled people are often invisible in society, and that invisibility is often what makes intimate partner violence (or violence of any kind) possible.
When an abuser can physically control if their victim leaves the house, and whether they get to talk to anyone, or can contradict their partner’s words and be believed because their partner has trouble communicating or whose mental illness sometimes affects how they experience the world around them, the incidence of violence against people with disabilities becomes even more invisible.
I recently read a small, qualitative study that looked at the impacts of intimate partner violence on the lives of women with disabilities.
As with research of nondisabled people’s experiences, a lot of the material on relationship violence and disability centres on the experiences of women. Men, and people who don’t fall into the gender binary, also experience relationship violence. The lack of research and activism with these groups means services can be rare or unhelpful.
The women in this study identified abuse as the most significant health risk they faced.
We can’t ignore that!
Many policy changes in the United States are calling for healthcare providers to screen for abuse. The implications of this need to be considered carefully when it comes to disabled people.
Their abuser may be with them during an appointment to facilitate care or communication, and it may be assumed that the patient always needs their caregiver with them.
It’s impossible for any victim to truthfully answer the kinds of questions suggested here, if an abuser is in the room.
Most people can communicate in some way, and most people can find a way to respond to these questions, which just ask for a yes or no answer – response options could include head gestures, hand gestures, eye blinks, words on a communication board or an electronic communication application (such as on a smart phone or tablet), sign language, or talking.
It’s appropriate, and necessary, for a healthcare provider to conduct at least part of a patient’s appointment with no family members or other caregivers in the room, unless the adult patient makes it known that they want someone to stay. Healthcare providers need to take an active role in meeting patients’ communication needs themselves, such as by making sure whatever technology the patient uses is there with them, learning how to use that technology, or providing a sign language interpreter. (Tip:
If a romantic or intimate partner (or anyone, really, other than the patient) says it would just be simpler for them to speak for the patient than for the patient to communicate directly with the healthcare provider, red flags should pop up like they’re on helium. They may put it in terms of making things easier for the doctor. I’d hate to think any doctor (or other healthcare provider) would privilege their own ease over communicating with the patient, but I’ve heard of too many times when a medical office has refused to do the work of getting interpreters for patients who need them to believe that this couldn’t happen.)
Many of the health factors research has shown are prevalent in people who experience abuse may be chalked up to disability without a full evaluation being done, so healthcare providers need to check their biases and beliefs about disability and illness and give their patients comprehensive care. Sometimes, when healthcare providers are less familiar with a patient’s medical condition, they may mistakenly attribute small changes to that condition, or presume that these small changes will be less bothersome to someone with a disability, so be less likely to investigate their cause. There’s also the assumption a lot of people make about disabled people’s relationships not being romantic or sexual in nature, coupled with assumptions about what abuse looks like, that could colour healthcare providers’ evaluations of whether their disabled patients could be at risk of relationship abuse.
Being abused can both cause disabilities—physical as well as psychological—and exacerbate existing impairments. Experiencing abuse can impact how people manage their impairments or medical conditions—withholding access to healthcare is a form of abuse. The physical and emotional toll of abuse can lead to stress-related illnesses, compounding abuse victims’ disabilities with additional disabilities and illnesses. (as someone with multiple disabilities, I can personally vouch for the ways that multiple impairments make it harder to mitigate being disabled in this world.)
Another key factor that came up in the study I mentioned above was low sexual self-esteem. When we’re constantly bombarded with airbrushed photos of models, and magazine articles telling us the 101 best ways to please our guy in bed (not everyone has—or wants– a guy, and sexual pleasure can’t be broken down into surefire tips the way, say, scrambling an egg can be.) Meeting these cultural expectations is impossible. For people with disabilities, who often cannot do sexual things the ways other people can, and the ways our culture says “real” sex can and should be done—and who’ve gotten repeated messages that their sexualities either don’t matter or don’t exist—having any sort of sense of sexual self-worth can be a challenge. The women in this study talked about not being physically able to meet the sexual expectations of their partners, or the expectations society has of how women should be an act sexually.
The participants in this study whose sexual self-worth was lowest were those with disabilities acquired in adulthood, changing their sense of self (sexually and otherwise) and, because of these cultural messages, making it hard to build a new, just as strong, sense of self.
Several of these women expressed that they dated men they would not have considered prior to their injuries, dated men who had criminal histories, or with whom they didn’t click, or whom they didn’t find attractive. This does not mean that they dated men who were more likely to be abusive; it says, I think, that they had perhaps turned off, or at least dimmed, their own warning signals.
Some people with disabilities may tolerate abuse in relationships out of fear that no one else will want them. Sending this message is common among abusive partners regardless of anyone’s abilities, and this form of abuse is even more insidious for people with disabilities because many have also gotten that message from friends and family. As I mentioned above, many people think that folks who get romantically involved with disabled people are a step away from sainthood, and they sometimes will undervalue the sexual, intimate, or equal partnership parts of the relationship.
Part of the structure of society’s attitudes towards the sexuality of people with disabilities is that, even if we do have sexual thoughts, we don’t and shouldn’t have the time to act on them because we’re just so darn busy being disabled. If low sexual self-esteem is a risk factor for abuse, then someone had damn well better make time for recognizing disabled people’s sexualities.
Some of the risk factors correlated with experiencing relationship violence are especially common among people with disabilities. Unemployment rates are high among people with disabilities (the study linked at the top of this post also made this connection). And, while the specific statistics vary, it’s generally understood that people with disabilities are abused, in both childhood and adulthood, at higher rates than people without disabilities.
We have a culture that makes all sorts of excuses for abusers, and all sorts of excuses for why it’s not more inclusive of people with disabilities. If we had true community accountability we wouldn’t tolerate abusive behaviour. We wouldn’t have, when a parent attempts to murder a disabled child, an outpouring of sympathy for that parent, instead of the child she harmed.We would have a culture that says: “We know life was hard for that parent, but it’s never okay to try to kill your child.” That culture would also say: “We need to do better by disabled children and those who care for them.” (Yes, I’ve been talking here about intimate partner violence, specifically, but family violence is similar in that it happens in the home, and within the family unit—both of which are considered—like romantic relationships– beyond reproach and closed to outsiders.)
Very few organizations work specifically with disabled people who have experienced abuse. Thesetwo are exceptions.
We need fewer exceptions. We need agencies to stop working on a scarcity model that makes being inclusive of and accessible to disabled people seem like too much work – like something they just can’t do with the limited financial and human resources they have. We need online and offline awareness campaigns to include the voices and experiences of people with disabilities, not as unique additions to the anti-abuse message, but as full and equal participants in sharing stories and support, and finding solutions.
I wrote the following post in March 2014, after attending Mara Levy‘s talk, Problem-Solving Sex with Disability at the Catalyst Conference.
Mara Levy is an Occupational Therapist (OT) in Washington DC. Occupational therapists help people who’ve experienced injury or illness to return to activities that are meaningful to them—activities like walking, driving, working, crafting, and the like.
Mara includes sexual expression and sex in her definition of meaningful activities. This may be a “well duh!” idea to many readers here, but there’s this belief out there that people with disabilities have more important things to worry about than being sexual, and that sex just isn’t relevant once someone becomes disabled. (Not true!) it doesn’t help that many medical and rehabilitation providers don’t address sexual issues, concerns, or changes with their clients, and you can have people really not sure where to go with meeting the sex and sexuality needs that don’t go away after illness or injury.
There are a lot of negative, or just plain silly, responses to disabled people and sexuality.
Here’s what Mara says nondisabled people need to do about that:
listen
rid themselves of paternalistic attitudes (thinking of disabled people as childlike or helpless)
Avoid jumping in to help or change something unless they are asked to
remember what is and isn’t their business (hint from me: If you wouldn’t ask an apparently nondisabled person on the street about their sex life, don’t ask a disabled person)
respect boundaries
And, Mara added, nondisabled people need to do this processing and awareness building on their own time.
A disabled person’s sexuality is no one’s business unless they ask you for help working on sexual issues, or unless they want to have sex with you (and you want to have sex with them).
People also need to question the all-too-common assumption that a visibly nondisabled person seen with a visibly disabled person must be the caregiver or helper. This gets old—really fast—especially if the people in question are actually lovers.
Speaking of partners, Mara made what I thought was a really important point about consent. It’s not just the person with disability who needs to consent, but their partner. For some disabled folks, most physical activities have some level of pain or discomfort attached to them. A partner may not be able to consent to something they know hurts their partner, no matter how much they’re told that it’s okay, and that this sexual activity is wanted. For people with chronic or episodic (occasional, brought on by specific factors like weather, certain activities, etc) pain, this may well be part of the sexual negotiation.
Because people are often sent the message that talking about sex and sexuality isn’t okay—and this is doubly true for people with disabilities—Mara emphasizes that it’s important for medical and rehabilitation providers to give their clients or patients explicit permission to talk about sex and sexuality. Even if that’s not their area of interest or specialty, even if they don’t have all the answers (people who do specialize in sex and sexuality rarely have all the answers), just listening can be powerful, and starting the problem-solving process can lead to patients and clients getting what they need and want from their sexual lives.
There are a lot of barriers to people with disabilities experiencing their sexualities, such as:
Physical and psychological pain or discomfort.
Societal attitudes about what “real” sex is, about who is sexy and attractive, even about who is allowed to live. (Hint from me: Disabled people are often told, by strangers and friends alike, that a nondisabled person would “just die” if they had such-and-such a disability.)
Paternalistic or inspirational attitudes. It’s a strange either-or in which people with disabilities are either seen as childlike—in need of help or guidance—or are seen as amazing, imbued with super powers. Sometimes, disabled people are subjects of inspiration porn, which isn’t at all sexy!
Mara proposes using the same model she uses to work with clients around their activities of daily living—I just had to throw some rehab speak in there—to helping people solve sexual problems or simply to reach their sexual goals.
This model has us looking at the person, at the environment, and at the situation. For each one, we figure out what needs to and can be fixed, what can be compensated for, and even what may traditionally be seen as a problem but which can actually be an asset.
What does the person bring? Not just their disability, but their hopes, their desires, their beliefs about sex (and what they know about sex). The environment may or may not be accessible to this particular person. What’s the situation? What’s the person trying to do? Does the available environment make the situation possible? (If the person wants to have intercourse with someone, but needs (maybe for pain or mobility reasons) to be able to lie down on a firm surface, and the only room that’s available has a fluffy feather bed, the needs of the person, the requirements of the situation, and the reality of the environment, aren’t going to go together.
That’s just a simple example of course. The kinds of questions that will be asked, and the kinds of fixing, compensating, or adapting that will be done will depend on the activity—and when it comes to sex and sexual expression, the activity list is endless. So here’s just a sampling of the kinds of questions one might ask:
Person
What are the physical issues (E.G. pain, reduced sensation, mobility impairment)?
What are the psychological issues (E.G. anxiety, stress, grief around acquired disability)
What values and knowledge does the person have around sex?
Does the person have a solid understanding of their medical condition? Is the prognosis and treatment known? Are there limitations on sex recommended by healthcare providers? If medication interferes with sexual functioning in a way that doesn’t work for the person, can that be changed?
Environment
Is the place where the person wants to express their sexuality accessible (E.G. dance club, bedroom)?
If the person needs a caregiver to help with some tasks before, during, or after the time of sexual expression, is there someone close by who can give nonjudgmental assistance?
Cultural environment: What attitudes are held about sex and disability, both separately and together? Are they negative or limiting? Has the person internalized them? Are they having to spend time and energy resisting spoken and unspoken messages they’re getting about their disability, their sexuality, or both?
Activity
What’s the activity in question? What movement or amount of physical and emotional energy is required? What props are required?
Are there things that would help, such as pillows to support the body or grab bars to help with movement?
What are the goals the person has for the activity—orgasm, connecting with their own body, laughing and sharing playful, intimate touch with someone else?
The questions you’ll ask will be very different if you want to go dancing and flirting at a local bar or if you want to find a romantic partner.
It occurs to me that this kind of problem-solving process can be applied to anyone’s life, whether you have a disability or not.
It seems to me particularly useful though in breaking down barriers that say that sexual expression for someone who has disabilities is just too complicated to warrant attention.
