Ready, Sexy, Able July News Round-Up

Jul 312015
 

Welcome to the Ready, Sexy, Able news round-up for July.

This month we have news and opinions from all over the world, about everything from sexual health rights for disabled people to the changes that can happen in a relationship after disability.

I have also included some sex education articles that aren’t disability-specific, as well as a section for general disability rights pieces.

Sexuality and Disability

Sex and disability: breaking the taboo

Asking questions about sex that disabled women are often afraid to pose

People with intellectual disabilities demand sexual rights

Address Sexual, Reproductive Health Needs of Young PWDs

My Husband Had to Learn Sex Again, and I Had to Become One Tenacious Bitch is an excerpt from Wondering Who You Are: A Memoir> published earlier this year and available in print, e-book, and audio.

New Sex Ed Program Created for “Special Education” Students

ACSEXE+: Talking disability and sexuality in Montreal (audio podcast, no transcript)

“A woman with a disability gets real about dating and sex. She’s funny and honest

I’m in a wheelchair, I’m queer and I’m still a real man.

Paralyzed Woman Poses In Lingerie To Prove Disabilities Don’t Limit Sexuality
The Public Reacts to the “Paralyzed Bride” taking off her clothes in the #Whatmakesmesexy shoot

This review of Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement, available in both print and e-book, suggests that this research on the sexual lives of disabled people living in sweden and Denmark is valuable, but that at over 300 pages,and filled with theory and analysis, this book won’t be accessible to everyone who could benefit from reading it.

Sex Ed

From Scarleteen, a sex and relationships education site for young people, comes advice on sexual communication and how to deal with feelings of sexual shame.

From sex educator Cory Silverberg: An article asking Is There Such a Thing As Good Enough Sex?

and Sex Is a Funny Word, a sex ed book for 8 to 10 year olds available in print and e-book.

Disability Rights

We Need to Change the Game of How We Talk About Intellectual Disability

Why Person-First Language Doesn’t Always Put the Person First

“Corrective” Surgery On Intersex Children is Medical Violence

Jul 262015
 

These loving, affirming parents are suing the doctors who performed medically unnecessary surgery on their son before they met and adopted him. Their son was, like about one in two thousand children, born intersex. His doctors decided the baby should be a girl, and surgically altered his genitals to match this gender assignment.

“MC” is ten years old now, and has identified himself as a boy.

His parents trust him to know who he is.

They’re distressed that his body was surgically changed before he was old enough to say what he wanted, changed for no other reason than that it didn’t look like what people thought a girl’s, or a boy’s, body should look like. MC is confused and hurting now, and it didn’t have to be this way.

Every time I hear about the pain a child went through because someone with decision-making power decided their body wasn’t good enough, I want to find them all (the children, of course) and start a big cuddle pile. Then I remember they’ve been touched enough against their will, so I go cuddle a stuffed animal instead and share these stories as much and as far as I can.

***
Unnecessary surgery disables children. Surgery creates scarring. For intersex children, this often means chronic pain, loss of sensation, and even injury as their body grows, but is restricted by surgical scar tissue and muscle damage. These are all physical disabilities, usually with lasting symptoms, that wouldn’t have been there had the surgery not happened. Gender dysphoria, and the sense of bodily violation, can lead to emotional pain and mental health struggles like anxiety, depression, and thoughts of self-harm. Sometimes, the outcome is suicide, or chronic and disabling psychological struggles.

A word on unnecessary surgery in general: I’m not a medical practitioner, and most definitions of medical necessity out there revolve around what insurance will and won’t cover, so I’m defining medically necessary for my purposes, as any procedure needed to save a person’s life or significantly improve their functioning.

A child who’s urethra is blocked or otherwise doesn’t work to carry urine out of the body should have surgery if it will help. A child who’s urethra just doesn’t look the way other children’s urethras look, or is pointed in a way that won’t let the child stand up to pee like boys and men are “supposed” to, should not have surgery unless or until they’re old enough to decide what they want.

No one should decide that purely cosmetic surgery should be performed on someone else’s body.

Surgery is stressful. Surgery is traumatic.

Not understanding what’s happening to your body is terrifying, and that fear doesn’t leave once the bad time is over.

It doesn’t matter whether a child can consciously remember the surgery. It, like abuse, leaves its imprint on the body and psyche.

This isn’t just rhetoric here; I know what I’m talking about.

Between my birth and shortly after my fifteenth birthday, I went through over 20 surgeries. Most of them were on my head and face. None of them were on my genitals. I remember few of them. All of those surgeries were necessary to my survival and my functioning, but I also know the toll they’ve left on my mind and body. There are only so many times you can take a body apart and put it back together again before it just doesn’t feel right or function cohesively.

To leave that toll just because a child’s body doesn’t conform to arbitrary gender or attractiveness standards is violence.

Adults are free to get whatever cosmetic or medical surgeries that aren’t strictly necessary they want. Yes, we could fault beauty norms for pushing some adults into thinking that they have to have surgery to improve themselves, but ultimately most adults are legally and ethically free to make their own choices.

Children aren’t given those choices. Babies and very little children aren’t able to make such choices. Children’s bodies are growing and changing—should not be interfered with unless interference is needed for survival and healthy growth. If it’s possible to facilitate a child being able to breathe, talk, walk, and otherwise move their body without inflicting lasting harm, then certainly that can and should be done.

We must not take the bodies of little children apart just to put them back together the way we think they should go.

***

The validation for surgery on intersex babies came from a psychologist named John Money.
This was the result of his experiment with which doctors have justified operating on intersex children.

One of the medical establishment’s goals is to prevent disability and illness. The Hippocratic Oath commits healthcare providers to never do harm.* How then can medicine, as a whole, ethically justify procedures that can cause physical or psychological disability.

We should not be disabling children. The fact that the justification for disabling children in this way came from an experiment that harmed a child–a human being–so greatly is horrifying.

Some people suggest genital-normalizing surgery can protect children from being bullied. People – children and adults – will always, always find something to bully someone else about. That’s not going to change. Submitting a child to surgery with unknowable results isn’t going to change social structures or the bullying problem. (I was going to say that surgery wouldn’t change human nature—which is also true—but I believe that the pervasiveness and escalation of bullying have much more to do with social structures than human nature.

I’d argue too that every child deserves privacy, including privacy from other children, so that if they don’t want to, or don’t feel safe with, showing their bodies to their peers, they don’t have to. It’s ridiculous, actually, that on one hand adults preach to children about modesty while on the other hand children are not given the chance to practice any form of modesty if they wish too.

I should clarify here that I don’t think there’s anything bad or immodest about bodies, or about being naked around other people in places where that makes sense—like locker rooms. What I take issue with is the contradictory messaging children are given around privacy, and the lack of options for children to make decisions around their own bodies. It’s shameful how little bodily autonomy children are allowed.

The tendency to bully around difference is a massive topic that can, and has filled books. People will always find difference, even if it’s not staring them in the face.

So, if we don’t do genital surgery on intersex children, what do we do about assigning gender? I don’t know. I’d like to think that we could just raise children in a non-gendered, or maybe a multi-gendered, way until, or if, they choose a gender for themselves. Most Western and westernized cultures are so dependent on the gender binary, for everything from naming children to assigning them to sports teams and other recreational activities, that my wee brain just can’t quite envision how these cultures could move past this tendency to raise children without actions that lock their existence into a gender binary. I wish I had that kind of expansive imagination, and even more that if I had that imagination it could make real cultural change.**

The only thing I know for certain is that hurting children is bad, and that having a medical degree and seeing genitals that don’t fit what your textbooks tell you is normal is not a free pass for causing hurt.

*For a modern version of the Hippocratic Oath, take a look here.

** Someone did have that kind of expansive imagination.

Further Reading

As Nature Made Him: The Boy Who Was Raised as a Girl

Relationship Violence Awareness: People With Disabilities

Jul 232015
 

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.)

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

Very few organizations work specifically with disabled people who have experienced abuse. These two 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.

Film Friday: Disability and Sexuality Pride

Jul 172015
 

Highlighting the many different voices of and experiences with sexualities, relationships, and disabilities – that’s our main goal here at Ready, Sexy, Able.

So, every Friday we’ll post a video or podcast that explores a different aspect of the connections between sexualities and disabilities. We’ll keep it accessible, with links to alternate formats when available, and written summaries when they’re not.

***

First up: Andrew Morrison-Gurza talking about one of the most “sex positive experiences” he’s ever had, with a disability-related comedy of errors on the side.

Read the story here, or watch Andrew’s dramatic re-telling.

Interview with Senior Sexuality Advocate Joan Price

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

Disability, Desirability, and Resistance

Jul 152015
 

Last month I attended the 37th Annual Guelph Sexuality Conference.

The lineup was amazing, and I learned so much – about consent, about community-based research with youth who have HIV, about how to use gender-neutral language to talk about sexuality and relationships – and about sexuality and disability.

Kaleigh Trace presented Desirability as Resistance: Reading Disability Differently, the presentation title that finally got me to stop dithering and register for the conference.

I had just read Kaleigh’s sexy, funny, thought-provoking book and was excited to meet her and learn more from her.

Workshop Description:

The aim of this workshop is to critically examine our internalized (and often ableist) ideas about what it means to be disabled, and rewrite these constructs by looking at some of the work being done by radical disability activists today. In particular we will examine disabled activists who work to be visibly sexual. As such, this workshop will benefit all folks who work with people with disabilities and any individuals working in sex ed. through a look at disability and sexuality.

One of the beautiful things about this session was how open and comfortable it felt to be there. Kaleigh got her participants laughing, and gave us plenty to think about, but where she really shines as a presenter is in presenting enough information, and asking the right questions, to spark open and emotionally safe participant conversations. I think we learned as much from each other as we did from her, and most people felt able to share experiences and opinions that made them more vulnerable to the rest of us. Kaleigh also does not set herself up as an authority. She was very clear with us that she speaks about what she’s learned and experienced, from her perspective as a disabled white cisgender woman – hers are not the only opinions or lived realities.

Kaleigh introduced us to the justice model for understanding and talking about disability. Two of the most well-known models of disability are the medical and social models. The medical model focuses on “fixing” disabilities, and people who follow it tend, in general, to ignore the expertise and abilities of disabled people themselves. The social model teaches that society’s prejudice and lack of physical access and acceptance is what disables people, but fails to take into account that many people are disabled by pain or illness, individual situations that society, as a whole, can’t do anything about. A justice model of disability, helps us look not only at the social roots and causes discrimination and exclusion of disabled people, but also the individual histories, experiences, and identities that shape each person’s life.

We talked about desirability, about how we’re taught that disability is the opposite of beautiful or attractive – that any body that doesn’t conform to beauty standards is automatically considered less than. Beauty standards are different from culture to culture, and have definitely changed over time. Right now in Western cultures, beauty standards are hinged on the ability to conform, to be symmetrical (or, at least, to be asymmetrical in a chic way), to be willing to put your body on display in some way (not necessarily through showing skin), to move and present ourselves only in ways that are pleasing to other people (and it seems to be assumed that everyone will find the same, or similar things, pleasing, appealing, or even sexy).

Kaleigh took us on a quick, informal tour of what desirability has looked like – at least the forms of desirability that have been passed down to us through paintings and, later, photos – through the last 500 years in Western cultures, a look she summarized as “people in hats and dresses.” These looks are modest by modern standards. They also force bodies to conform, by covering them up and making them look the same. It’s hard to see certain kinds of disability and difference when a body is covered by fabric, sometimes from head to toe.

The kinds of clothing that are seen as desirable now, and over, say, the past sixty years, bring attention to the body, and show differences between bodies.

What we find attractive to look at hasn’t quite caught up with this trend, so that when people see more of a disabled or different body, and it doesn’t fit into the beauty or sexual attraction standard, they clasify it as ugly, or even nonsexual.

When disabled people talk about sex, especially about their own sexuality, when we change the stories about what and who is desirable by including ourselves or other disabled people, we’re turning our desirability into an act of resistance.

Resistance is a tricky thing. We talked a lot about what it is, what it looks like, and whether we actually want to do it.

Do we want to challenge stereotypes of how we’re supposed to behave or what we should say just for the sake of challenging stereotypes?

If, in resisting these stereotypes, we’re acting in ways that have us not being true to ourselves, are we really resisting what’s expected of us? Or, are we just performing a different kind of conformity?

Further Reading

Kaleigh’s book: Hot, Wet, and Shaking: How I Learned to Talk about Sex

Some of Kaleigh’s picks for “rad disabled activists”

More sexuality and disability resources.

Sexual Expression Is a Meaningful Activity, Too

Jul 062015
 

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.

Love doesn’t always win for people with disabilities.

Jul 052015
 

June 26 was a history-changing day. Marriage laws in the U.S. finally caught up with reality – many people’s reality, anyway.

This ruling opens up a whole new world of fredoms. It solves some of the problems that transgender people wishing to marry have faced up until now and gives same-gender couples the option to marry if they wish.

But the work, the struggle, the heartbreak isn’t over yet. more than half of the states still allow LGBQ and transgender people to be discriminated against by current or potential employers. Incidents of violence against LGBQ (lesbian, gay, bisexual queer) and transgender people is still frighteningly
high.

The legal battle aroud marriage equality has been about making sure that same-sex couples have the same rights and protections as mixed gender couples.

But, for many people with disabilities, no matter what either partner’s gender is or isn’t, marriage can mean the end of the same kind of safety and security other married couples count on. Not only do these couples have to contend with bias against, and disbelief of their relationships, but their financial security and access to health insurance is often removed or limited when they marry.

Love doesn’t always win either for folks with disabilities, especially for folks with intellectual or developmental disabilities. The love of and between disabled people is often discounted.

Love doesn’t win when people don’t take your desire to get married seriously. Love doesn’t win when you marry, but the housing that’s supposed to help you be as much a part of the community as possible doesn’t let you live together. Love doesn’t win when your wish to spend time with the person you love is seen as “cute,” or childlike. Love doesn’t win when you want to be recognized as a couple and do the things other couples do, whether you can legally marry or not, but the people around you, the people who are supposed to be supporting you, won’t let you do that.

Paul and Hava Forziano got married in 2013. Finding a place where they could live together proved to be a challenge.

It’s worth taking a good look at why the group homes where Mr. and Mrs. Forziano lived before marrying thought that helping them live together was “unprecedented,” “impossible” and “fraught with difficulties”.

IN defending these organizations, the legal team cited Mr. and Mrs. Forziano’s Individualized Service Plans (ISPs) as reasons why the couple could not live together and be adequately served by either group home. They label these plans as “complex treatment plans.”

An ISP is actually a “written personal plan, or blueprint, for a person with developmental disabilities that summarizes the help he or she wants and needs to achieve his or her own aspirations in life.”. Meeting residents’ medical and supervision needs is only part of the picture here. Actually meeting the requirements of Mr. and Mrs. Forziano’s ISPs would mean finding a way to help them live together, even if that meant referring them to another agency.

Not meeting Mr. and Mrs. Forziano’s “aspirations in life” – to live together as most married couples in North America traditionally do – is, I believe, backwards thinking. This is not what the community living movement is all about.

The wonderful part of this story is how supportive Paul and Hava’s families have been of their relationship, and of their desire to live together. Disabled people, especially developmentally disabled people, don’t often get that kind of support from their families.

Bill Ott and Shelley Belgard also have lots of family support. They’re not married legally, as doing so would reduce Shelley’s access to needed health insurance, but they had a commitment ceremony and live together. They live in a different part of the country, and their living support needs are different, so getting to live together after their marriage wasn’t the same sort of ordeal it was for Paul and Hava Forziano. Bill and Shelley had a tonne of support for being together, but still, when Shelley’s mother heard about their engagement, , her internal response was: “This, too, shall pass.”Bill and Shelley proved her wrong, and the couples therapist they worked with also went to bat for them. So, in addition to everything else Mr. Ott and Ms. Belgard had working for them, they had someone from the healthcare field willing to see that their disabilities didn’t diminish their love or their capacity to be together. Read the rest of their heartening and smile-inducing story here.

And one more story, among the thousands out there, most of which haven’t been told:

I won’t tell you much about the two men in this story – the two men who loved each other. You need to read this for yourself. It’s a capsule of discrimination against gay people, dismissal of disabled people’s wants and desires – and of love – and a reminder of this countrys history of cruelty and violence towards disabled people, especially by the folks tasked with supporting and helping them.

Here’s the story. I recommend having tissues handy.

Love did finally winfor these men.

Further Reading

Author’s Note

Referring to the couples mentioned in this post As Mr. and Mrs. Forziano and Mr. Ott and Ms. Belgard was intentional. I wanted to show respect for their relationships – their unions. Using more formal titles, and more formal language in telling their stories, was also a way to show that their stories are important, that we shouldn’t take them lightly. Since I don’t know them, consistently using their first names would have been overly familiar, and would have made them sound like children, not the adults they are.