May 202016
 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Further Reading

children of Disable parents Speak

Mar 312016
 

A graphic of an open  file folder.

File Folder

News and views on sex and disability for February and March.

Here at Ready, Sexy, Able

Sexual Abuse, Sexual Rights, and Intellectual Disability: A Messy Political Stew

Sexual abuse policies at institutions for people with disabilities don’t usually make it into the news, so when they do, that is news. Here, I unpacked what was said, and not said, in news articles about the Montana developmental Center, and looked at the whole picture from a disability rights point of view.

Imagine a world where you don’t get to touch or be touched, or where you’re separated if people catch you having sex you want to be having, where the people don’t ask you if you wanted that sex, or intimate touch, or whatever it was you were doing and whatever that touch meant to you until after they made you stop, and then they’re only asking you to see whether they need to take a sexual abuse investigation to the next level.

Read the rest of the post

Illness and Disability? They get along with sexuality just fine.

Being ill might change your sexuality (just like getting married, or losing a loved one, or making a giant life decision can change any and every part of you) but it doesn’t take it away. Being in pain all the time might make you want sex less (or it might make you want sex more). Changes to your body might suddently and dramatically affect how you express yourself sexually, but life changes will do that too – just sometimes less violently.

Read the rest of this post, and click through to a fun Podcast discussing everything from Scottish fiddle music to chronic illness, disability, and sexuality.

Sexual Health And Disability: Are we afraid to talk about it?

There’s something we’re not talking about.

There’s something the news articles and personal essays, the films and poetry, the sexy photo spreads and opinion pieces about sex and disability are leaving out – safer sex and sexual health.

To be fair, most mainstream discussions of sex and sexuality aren’t talking about sexual health either, at least not in ways that encourage people to take care of theirs.

Read the rest of this post, including a link to some disability-friendly sexual health tips, here.

Dating and Sexual Expression in the News

These articles all highlight, I think, what happens when you add the experience of disability to insecurities around dating and sex that most people feel, in some way, at some point in their lives. There’s no one way a date or sexual experience is supposed to go, and there’s no one way people of a particular age, or gender, or experience level, or anything else, experience their sexuality. When we’re talking about “sex and disability,” it’s usually the disability, and people’s reactions to it, that make the experience of sex and dating unique. Maybe, if we can change cultural attitudes enough, we’ll get to a point where nondisabled people won’t turn down a first date with a disabled person because they don’t want to get too involved – it’s a first date, after all! – not to mention a point where people will shed prejudices about what it’d be like to be in a long-term relationship with a disabled person. Maybe we’ll get to a point where communication during sex, not always wanting or needing to do the same sexual things, a shedding of the idea that orgasm, or “man on top” or anything else other than desire and creativity are required for happy sex, all of these things won’t seem like disability adaptations.

Disabled dating on Tinder: ‘People ask if I can have sex’

Last month, Tinder users took to social media to expose the discrepancy between their Tinder photos and what they really look like – think flattering angles, body-con dresses and blow-dries, versus double chins, coffee-stained T-shirts and bed hair. Unknowingly, a fleeting trend pointed to the dilemma that disabled online daters routinely find themselves in: do I show my disability in the photo? And, if not, or for the many people whose disability isn’t visible: when do I tell someone I’m disabled?

Read the whole article here.

Give chronic pain away

There’s this paradox of being actually fragile while having trouble facing my physical vulnerability as a reality when I’m playing or having sex. I’m pushing back on chronic pain all of the time. Maybe sharing my body and myself fully is being able to let my partner absorb some of my fatigue and my fear of being fragile without feeling guilt or shame.

I have to understand that my lover checking in about my comfort and pain during sex is not an attack on my limits, but a recognition of me.

Read the rest of this post here.

Price of Intimacy: The Time I Hired a Sex Worker

I sent David a cursory email, telling him that I was interested in using his services, but that I had never done this before, that I was nervous. I also casually explained as best I could that I lived with a disability and used a chair. He emailed back some hours later, letting me know that he had experience working with clients with disabilities. David wrote bluntly: “If I’m unsure of something, I’ll just ask.” It was a refreshing change from all the guys who tripped and tumbled over their discomfort.

Read more about Andrew’s interaction with David. Hint: It has a happy ending.

Dating With A Disability

Living with a disability often means facing inaccurate assumptions; dating with one is no different. People sometimes assume those with disabilities only date others with disabilities, for example, and others believe that “if you’re disabled, you better hook up with someone who’s not because it will just be too hard,” says Julie Lynn Williams, an associate professor in Wright State University’s School of Professional Psychology who studies disability issues. There’s also a stigma that people with disabilities are asexual, or that they should be so they don’t reproduce, Williams says.

Read the rest of the article for a sweet story on disability and romance.

How Does It Feel? The Question I Wish You’d Ask Me as a Queer Man With Disabilities

Sex and disability feels scary. I have given up counting the times that I have held my breath after I’ve let a man in my apartment. I watch him come in, and I watch him look at the realities of disability that fill the space; commode chairs, ceiling tracks, portable lift devices that have been specially designed to meet my needs. I watch his eyes checking for the tiniest hint of doubt in them, ready to give him an out should he need it. I sit there in those milliseconds that tick by like millennia, hoping that he doesn’t leave, that he won’t want to go away from here, from me, from what is yet to come.

Read how the mechanics of sex with a disability are only the teeniest, tiniest part of the whole sexual experience.

The Disability Experience

Gimp At The Porn Awards

Everyone I talked to was engaging and super-friendly. Not overly friendly, like those with fake sweet tones dripping from their voices when addressing those with visible disabilities. I can’t hear well, but I can hear that grossness. I find ableist tones are imbued with overt sweetness, assumptions of lacking cognition, dismissive, or a mix of all that fun! Aside from an academic I chatted with, not a single person spoke to me like I was an infant or something to be placed on a pillow to be looked at. People interacted with me like a fellow human. It was remarkable. It is also quite sad to even have to note this truth; it shouldn’t be rare yet it continues to be.

Read more about Bethany’s experience at the porn conference.

Radio talking Disability & sexuality, the social model and disability pride

This is well worth a listen! Access note: There is no text transcript of the interview.

I did a little interview on Clementine Ford’s Misandry Hour and talked about Disability & sexuality, the social model and disability pride.

Radio Interview on sexuality and disability and disability pride with activist Jax Jacki Brown

‘Pretty Cripples’ and the people turned on by disability

In a world that constantly tells us anything out of the realms of “normal” is undesirable, I’d be lying if I said I wasn’t impressed by the idea that there are people out there who would happily love and accept every little bit of me, especially the bits that I’ve always considered flawed.
But, as I started to come face to face with people in the devotee community, I felt wary.

learn more about disability devoteeism.

Disability and Sexual Intimacy

Fantastic to see an independent living center offering workshops on sexuality!

Disability and sexuality is not a subject that is at the top of the list of the enquiries we receive at ILC in Nedlands or at ILC Cockburn. Talking to Occupational Therapist colleagues and Carers it seems that the subject can be perceived as a taboo subject or sometimes it can be the white elephant in the room, it’s there but who mentions it? Should it be mentioned? Who should mention it first?

Read the rest of this post here.

Marriage and Parenting

I Didn’t Want To be a Burden on Our Minimoon

My beautiful husband didn’t take to the Internet to complain that my pain ruined his weekend, but actually wrote a loving Facebook message about how amazing our accommodation was, that I am sore but it’s nice to spend time with me doing nothing. It was so uplifting and reassured me he had a good time and I’m not a burden.

Read more about how Carly and Adam celebrated their marriage, in disability-friendly style.

Parenting with disability. What it’s really like.

Children are resilient and adaptable.

Besides working around not driving, my kids have always lived with the knowledge that sometimes they can’t touch me.
My family deals with my disabilities and associated disruptions pretty well. It is hard not to see myself through the eyes of other parents, or the eyes of my 14-year-old’s friends, when they ask my why his mom doesn’t drive and then, by association, “What’s wrong with her?” And he has to explain.
I hope my kids aren’t embarrassed. We live blocks from the schools, doctor, dentist, library, bank, and a couple restaurants. I walk everywhere, when I’m able. My husband works at a flexible job. I work at home. That’s how I do it. A lot of help and careful management of time and resources.

Learn more about how this family adapts to Mom’s disabilities.

The Disabled parenting project
This is a new online space, launched in March, that seeks to bring disabled people together to discuss and share resources around parenting as people with disabilities.

The DPP also seeks to inform social policy through the development of resources, created by and for the disabled parenting community, and to promote social justice for disabledfamilies.

Visit the Disability Parenting Project

Mar 172016
 

It’s not every day that policy changes around sexual abuse reporting at an agency for people with developmental and intellectual disabilities are covered in that agency’s local newspaper.

What’s not unusual is the amount of stuff there is to unpack around how disabled people’s bodies, sexualities, even our very lives are treated. You can double or triple how true this is when it comes to talking about people with intellectual or developmental disabilities.

This reporting misses just as many issues and questions as it uncovers.

Below, I unpack some of these issues and fill in some of the missing pieces that need to be in this conversation.

***

Imagine a world where you don’t get to touch or be touched, or where you’re separated if people catch you having sex you want to be having, where the people don’t ask you if you wanted that sex, or intimate touch, or whatever it was you were doing and whatever that touch meant to you until after they made you stop, and then they’re only asking you to see whether they need to take a sexual abuse investigation to the next level.

Even if all of this is happening for a reason – because you or the person you were with has a history of being abusive and the people who take care of your physical needs are tasked with making sure you or they don’t hurt anyone else, or if you or the person you’re with has been abused and the people who take care of your physical needs have been tasked with keeping everyone safe – living this way still isn’t going to feel comfortable or nurturing.

***

The Story: The Montana developmental Center has updated their sexual abuse investigation policies to meet federal standards. Before the update, all sexual contact between clients was assumed to be nonconsensual, and was treated that way. Clients found engaging sexually with each other were separated immediately and a sexual abuse investigation was set in motion. After the update, sexual contact between clients still isn’t allowed, but if clients are caught having sex, whether or not they consented to that sex will factor into the investigation. If it’s found that a. Everyone involved in the sexual activity agreed to it. and B. Everyone involved was intellectually capable of consenting the investigation wouldn’t go any further.

Yes, it’s commplicated.

It’s even more complicated because the guidance clients get about what is and isn’t appropriate behaviour doesn’t match the policy around what is and isn’t abuse. Clients are told that no touch is allowed between clients. This leads to confusion since clients report nonsexual touching because they’ve been told they’re supposed to. The systems in place don’t require opening an abuse investigation for nonsexual touching.

I can’t help thinking that this confusion over the expectations of clients would make a lot of clients feel unheard, if they go to report something, because they think they’re supposed to, and only then are they told it’s not a big deal.

***

About touch: I wonder if, instead of restricting and monitoring it, in not allowing touch instead of allowing it under supervision…might this not be interfering with the clients’ abilities to grow and develop new ways for understanding and relating to the world?

Research has shown that touch can be a great vehicle for sharing and understanding emotions – though I don’t agree that these findings support that men are from Mars and women from Venus; there are plenty of other reasons for gender differences in research results.

There’s also research to support that touch is crucial in emotional regulation, something especially important for folks who may have trouble with verbal communication. This reminds me of a story I heard about a woman who worked in a group home for adults with intellectual disabilities. One of her clients had the nasty habit of hitting other people. Somehow, I’m not sure of the details, this staf member figured out that if the client received a backgrub every day, he was much more relaxed and much less likely to hit people.

Sure, this was controlled touch,, in a regulated situation, done for a specific purpose.

I can’t help wondering though if allowing clients to touch (nonsexually) under supervision couldn’t be highly beneficial as well. There seems something so cold and clinical about living somewhere where you’re forbidden to touch at all, instead of being encouraged and taught to touch in healthy ways.

Sometimes, the expectation that a person with an intellectual or developmental disability won’t be safe doing something is more harmful than finding ways for them to do that thing safely. This is especially so for basic needs that so many of us take for granted, such as the ability to spend time alone. One of the stories shared by the social worker who presented this workshop, was about a young man who was deemed so out of control he needed to have two support workers with him at all times. Yet, the intensity of his behaviour revved down once a way was found for him to safely spend fifteen minutes alone every day.

***

I do wish that this reporting on sexual abuse policies had also included an acknowledgement of the broader issues around the sexualities of people with intellectual or developmental disabilities. People with intellectual disabilities are often thought of and discussed as if their sexualities either don’t exist, or are wildly out of control, and referring to sexual abuse, actively minimizing desires by explaining that no sexual activity is allowed, reinforces this either/or of helplessness or harmfulness.

To be clear, sexual abuse, whether being an abuser or being a victim, doesn’t have anything to do with sexual rights, but whenever we acknowledge that people can or may be being consensually sexual, we need to (or at least I think we need to) recognize that people with intellectual or developmental disabilities are just as likely to have fully formed sexualities of all diferent shapes and expressions as anyone else, and just as likely to find ways of acting on these sexualities as to be the victim or perpetrator of abuse.

***

This is the point where I stop to share that this piece is dificult to write. The mess of responsibilities, rights, care needs, community resources, feelings, behaviours, institutional histories, power dynamics – it is a stew, and not the tasty kind.

It’s painful to acknowledge that people with developmental disabilities, a population we’ve done so much wrong to as a society, are also capable of doing harm to others, and that, to keep them and others safe, their interactions with others may need to be limited.

Some people with developmental disabilities are sexual abusers. Treating and working with this population is a big part of what the Montana Developmental Center does. Not easy stuff, by any stretch of the imagination.

There are people who are a danger to others. There are people who have trouble understanding personal boundaries, or even with understanding which of their actions will hurt others and which won’t. There are Some people with intellectual or developmental disabilities express really strong feelings through violent behaviour, and don’t understand how their strength affects others.

Some folks, because of developmental delays, never learned, in ways they could understand, how to interact with other people, or how to manage their emotions, the way other children (mostly) do.

People with intellectual or developmmental disabilities are, by and large, not much different, in the grand scheme of things, from the rest of the population – which means that some folks are or will be violent, and will probably have a harder time hiding those violent behaviours than many people who are, or can pass as neurotypical do. Neurotypical folks just (usually) conceal their dangerous behaviours better.

***

Dave Hingsburger has worked with people with developmental or intellectual disabilities for over four decades now. He’s been an unfailing advocate for the rights of people with developmental disabilities to express their sexualities in all ways that make them happy and keep them, and others, safe. Dave is also very clear that some people with developmental disabilities are violent, and that these violent behaviours need to be managed, and prevented, for the safety of everyone who lives and works with the violent person.

There are precedents for respecting the sexualities of people with intellectual disabilities and actively preventing abuse.

Organizations have developed models for honouring these sexualities while while providing the needed level of “protection from harm, abuse, and exploitation.”

***

I wish the article about policy changes had also explored what changes are being made to hold everyone accountable when there are cases of staf sexually abusing clients. Staff abuse of clients happens far too frequently in institutions – the Montana Developmental Center will be closing soon, partly because of high rates of abuse.

***

The people of Boulder Montana, where the Montana developmental Center has been located for over a century, feel angry and betrayed by its closing. The community is furious that a prime source of income and employment is being taken away from them. The people in this town have every right to fear these things, but this article is disappointing for its lack of discussion about why the institution is closing, beyond several interviewees’ firm conviction that the state should have considered the town’s needs in this decision. There’s no mention in the article about the history of deinstitutionalization, its pros and cons, or what community placements for folks with developmental, intellectual,or psychiatric disabilities actually look like.

There’s a lot of material in this article that demands to be ripped apart from a disability rights perspective, but I’ll just highlight three points that I think are especially indicative of general attitudes towards people with intellectual disabilities.

The Rev. Lowell Bartels, who leads the Tuesday services at the nondenominational Good Shepherd Church at MDC, said he fears for the future of those in his congregation.
“We have to keep in mind that these are adult bodies with children’s minds,” he said, fearing where they may end up if they don’t make it in the community setting. “They are going to go to jail.”

No, and no, and an extra dose of no on top! Calling people with intellectual disabilities children in adult bodies is outdated, and wrongheaded, thinking.

Mental age refers to how a person does on standardized tests. That’s it.

Acording to The Arc:

The mental age only refers to the intelligence test score. It does not describe the level and nature of the person’s experience and functioning in aspects of community life.

I’d add that when we evaluate people based only on how well they do on a standardized test, or how they communicate, or even how they relate to the world around them, we forget that there are other senses that we all use to learn about and understand our own experiences and what happens around us, and that just because an adult with an intellectual or developmental disability can’t tell us what’s going on in their minds, or if they can’t communicate memories in ways the rest of us think are logical, doesn’t mean that they don’t retain feelings, sensations, experiences from how ever many years they’ve been on this planet. A thirty-five-year-old is going to have way more of these stored up than will a five-year-old. We need to respect that.

If an adult with a developmental disability chooses activities that are usually more suited to a child, that’s their choice, and has way more to do with what their unique personality and combination of skills and abilities allows them to enjoy, than with them having a “child’s mind.”

We have to stop thinking of and treating adults with developmental disabilities as children

From a nurse who used to work at this institution:

“When I worked there, I loved the people I took care of,” she said.

However, she said, she had her arm broken once and jaw broken twice by clients.

I am so deeply sorry that this nurse went through the physical pain and emotional trauma of being harmed by her patients. That’s a scary fall-out that can happen when people work in healthcare, with any sort of patient or client. I’ve met several former nurses over the years who had to leave direct care after sustaining permanent injuries inflicted by patients. To be sure, the risks might be higher, more concentrated, in a space that works with people who already have a history of violence.

But, try this on for size: IN a place where abuse and mistreatment happens, where the clients have emotional or verbal communication issues, is it really surprising when clients act out violently? If you’ve seen abuse,or know it’s happening,, or have experienced it, and you feel vulnerable, and you don’t feel like you can tell anyone, and you don’t know what to do when you have emotional outbursts (the way most of us do), what else are you going to do but lash out? No, violence is not okay, but the fact that it happens in the course of care should make us look at the bigger issues, and should also not make us assume that people with intellectual disabilities are uncontrolled and a danger to the community.

Placing this nurse’s experiences near the beginning of this article sets us, the readers, up to think that the people living in the town are in in greater danger if the institution closes and its clients are transferred to living in the community. This impression is strengthened by the lack of information given about just what community living for adults with intellectual and developmental disabilities can look like, what kinds of supports they’ll have, how their emotional needs and behavioural histories will be managed, and so on.

A current employee at the institution says:

…the clients “do more in their personal life than I do in mine.”

Ah, but Sir, you have choices, way beyond whether you have chocolate or vanilla pudding for your evening snack,or whether you go to the movie theatre or the bowling alley for group outing. Regardless of how much they need the care they’re receiving at this center, none of the clients chose to live there. That’s a basic personal freedom that was denied to them. Having that happen is way bigger than who has how much of a personal/social life.

It feels really awkward that this staf member felt like he had to prove something by telling us he doesn’t have much of a personal life. It feels even more awkward since he is then reported as saying:

And as for the clients, “they grow on you.”

Well, I’m glad we got that straightened out.

In fairness, we don’t have access to the context for this quote. Maybe it was referring to another comment or question that was left out of the article.

Sure, it’d be an adjustment to work around people who don’t communicate the same ways other adults do, who are sometimes violent or unpredictable, who have interests and hobbies we usually associate with children. But, if we approach any group with basic respect, they shouldn’t have to “grow” on us, except for the usual personality conflicts everyone has.

Further Reading

The Arc: Sexuality Position Statement

The Right to Community Integration for People with Disabilities Under United States and International Law

Already Doing It: Intellectual Disability and Sexual Agency

Feb 292016
 

The last day of February is Rare Disease Day.

Today I’m thinking about what I’ve learned from chronically ill friends and acquaintances, about the ways most chroniclly ill people’s lives continue, through all the treatments, all the doctor appointments, the sometimes daily medical tests, the waiting, the occasional or constant threat to life or current level of wellness. I’m thinking about the ways relationships and sexuality get shoved to the side when we talk about young people and adults with chronic illnesses, and about how that doesn’t always reflect people’s desires or lived experiences.

Being ill might change your sexuality (just like getting married, or losing a loved one, or making a giant life decision can change any and every part of you) but it doesn’t take it away. Being in pain all the time might make you want sex less (or it might make you want sex more). Changes to your body might suddently and dramatically affect how you express yourself sexually, but life changes will do that too – just sometimes less violently.

Going through treatments and surgeries might make you think you’re less attractive, or make you feel totally crappy about yourself, but those experiences don’t make your sexuality disappear. Feeling like an object because no one can figure out how to help you feel better, and because the most touch you get in a day is from medical instruments and hands that see you as an object of curiosity, not a subject of love, might make you feel less human, less sexual, but that’s you relating to your sexuality too – and you feeling less desirable doesn’t mmean you’re any less desired.

Having an illness – or two, or three, or six – doesn’t make you nonsexual. It doesn’t make you asexual either, unless that’s where your personal sexual identity lies.

To get all clinical about it, Sex remains an important contributor to quality of life in many patients with chronic illness and their partners.

Not surprising, but it also looks like healthcare providers aren’t talking about sexuality much. Why not? This researcher thinks one of the problems might be that:

Patients feel that if sexual health were important, their healthcare provider would raise the topic during the visit. At the same time, the healthcare provider feels that if it were important to the patient, the patient would bring it up. So, either side is waiting for the other to talk about it first and ultimately, nobody brings it up.

Sexual health isn’t just whether you have an STI, or a yeast infection, or are worried about fertility – though those things are just as important, and usually more important to talk about when you’re ill; sexual health is about your whole sexual self, and changes in desire, sexual arousal, or how your body physically responds to sex, how your illness affects your current relationship or dating prospects, has just as much to do with your health as anything else.

You might have to do sex and intimate relationships diferently. Having sex with yourself or a partner might get shoved lower on the priority list. You might want to do sex differently because you need it to do different things for you. Maybe you hold onto a sense of vibrancy and aliveness by diving headlong into the world of online dating, or maybe you make sure you wear something every day that makes you feel attractive. Maybe you use sex as a way to care for your partner, because they’re caring for you in so many other areas of your life.

Maybe you make sure you and your beloved are still connecting by scheduling dates at the hospital coffee shop an promising each other that, for one hour, you will not talk blood cell counts, bills from the insurance company, or which doctors have the bedside manner of a slug.

You might have to learn how to do sex diferently, but it’ll also help to know that 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. Sexuality is part of that daily life you might really be craving more of as you cope with illness.

I, I don’t talk about it {sexuality} much, but I do feel that it’s important to talk about it on here because people need to know that it’s okay, and I had a recent experience that was just perfect demonstration of this, and that is that you can be lying in a hospital bed with tubes all over you, and your partner can walk in and see your brainwaves on the screen and be like, let’s conduct an experiment! And right there in front of the camera while they’re watching you for seizures, he can just grab you — in the hospital bed and be like, you are still totally hot to me.It was. It was pretty badass. It was, it was one of those moments where you just kind of, you don’t think of yourself as sexy. You think of yourself, we societally condition ourselves to believe that when you are in a hospital or when you are facing a chronic disability or illness that you’re not sexy.

— Sassy Outwater

That’s an excerpt from an awesome podcast on everything from seizure disorders, to Scottish music, to sex and disability, as lived experience and in romance novels. I think it speaks to the relationships between illness and sexuality better than any research or theory ever could.

Living with illness or disability isn’t one-dimensionally just about that illness or disability, and I think this Podcast shows that really well, with Sassy talking about music (AKA her work), books (things she loves, and also her work, and disability, with and without the sexy parts. There’s even a full transcript for people who can’t or don’t want to listen.

 Blog Entries  Comments Off on Illness and Disability? They get along with sexuality just fine.
Feb 162016
 

There’s something we’re not talking about.

There’s something the news articles and personal essays, the films and poetry, the sexy photo spreads and opinion pieces about sex and disability are leaving out – safer sex and sexual health.

To be fair, most mainstream discussions of sex and sexuality aren’t talking about sexual health either, at least not in ways that encourage people to take care of theirs.

Safer sex has a rep for being boring and unsexy. Getting regular sexual healthcare is billed as embarrassing, and, what’s more, unnecessary unless we’re a certain kind of person, or doing a certain kind of sexual activity, or have had X number of partners.

Newsflash: Getting sexual healthcare, and practicing safer sex, saves lives and protects health, which isn’t boring. At least, I don’t think so.

Maybe we folks with disabilities haven’t been talking about safer sex because we’ve been busy convincing people of the obvious, that disability isn’t unsexy and that many disabled people do have, or want, sex. Maybe folks haven’t been talking about how they protect their sexual health because they’ve bought into the myth that stopping to put on a condom or dental dam (whether in real life or on the page) ruins the mood Maybe folks haven’t been talking about safer sex because they know talking about sexual health makes us all feel a little scared and vulnerable, and we know that disability makes nondisabled people feel scared and vulnerable.

I’m not sure why we’re not educating and telling stories about sexual health, but we need to start, for our own well-being if for nothing else.

People with disabilities who are or want to be sexual with others need access to sexual healthcare, access that sometimes just isn’t there. We also need to make information about safer sex practices part of the collective wisdom of disabled people. Just like disabled folks turn to each other to share strategies on getting our employment, travel, or technology-based access needs met, folks need to be able to draw on that collective wisdom for information on things like how to put a condom on when you can only use one hand, or how to get help filling out forms at a clinic without telling your sexual history to the whole world, or how to get a pelvic exam when your legs keep going into spasm – information you won’t find in any sexual health guide I know of.

Sexual health is a big deal. Remember that thing about saving lives and supporting health? Yes, that one. And that goes for supporting health whatever our baseline health status happens to be.

Preventing or treating STIs (sexually transmitted infections) is important for everyone, and important for public health as a whole, but I think it’s fair to say that STI prevention can be especially important for chronically ill or disabled folks whose baseline health and functioning can be compromised by something as basic as the common cold, or for someone who relies on others for assistance with personal care and health maintenance.

People, no matter what their disability status, are often so scared of STIs that they just ignore safer sex, or only practice it sometimes, or only for certain activities.

But there’s no shame in supporting our own health, and there’s no shame in being ill, either.

As my friend and colleague Ducky DooLittle says: “Good, nice, clean, sweet people get STIs every single day.”

If you want a quick run-down on safer sex in general, I suggest:

To start the conversation on safer sex and disability, I’m sharing this article I wrote for SaferSex.Education.

Disabled People need sexual healthcare too

Most safer sex guides take it for granted that all of us are going to have the manual dexterity (ability to move our hands) to unwrap and use a condom, that getting STI testing is as easy as booking (and keeping) an appointment at a free or low-cost sexual health clinic, and that communicating with a partner about safer sex is as easy as having a few face-to-face conversations about it. For those of us who have any sort of physical, cognitive, or psychological disability, these and other “basic” safer sex strategies may not be so easy.

It doesn’t help that disabled people are assumed to be nonsexual, or to have more important things to worry about than the “luxury” of sexual feelings or a sexual relationship, or any number of other myths about sex and disability all of which miss the mark in one way or another.

People with disabilities who are sexually active, or planning to be sexually active, need to practice safer sex, and get regular sexual healthcare, just like anyone else.

A Quick Overview of Safer Sex

If you’re disabled, know that you have the right to whatever expression of your sexuality you want to have, and you have the right to be safe when expressing your sexual self, both alone and with partners.

Safer sex is about taking care of your sexual health, and protecting yourself from sexually transmitted infections (STIs). Preventing unwanted pregnancy is known as birth control, not safer sex, but it’s still part of your sexual healthcare if pregnancy is something that can happen to you or someone you’re sexually involved with.

Safer sex includes using barriers (such as condoms or dental dams) for genital contact with a partner, and getting regular sexual healthcare, including STI testing.

Sexual Health Care

Most sexual health services aren’t set up to meet the needs of disabled people. In the U.S., many providers don’t get training in working with patients who have disabilities. Coupled with assumptions about disability and sex, this can lead to you not getting the sexual healthcare you need. That might be a healthcare provider who doesn’t ask you about sex, or asks in such a way that assumes you’re not having it.

Or, it means examination tables that don’t accommodate people whose bodies don’t move in the ways expected for traditional exams. This includes staff unable, unwilling, or untrained to assist with positioning your body on the table.

Or, it means reams of forms to fill out, and informational pamphlets and brochures that are only available in print.

Even one step into a building- or doorways that are too narrow- can keep you from seeing a healthcare provider of your choosing.

read the rest of this article for some disability-aware tips on getting your sexual healthcare needs met.

Feb 052016
 

Of the five sex toy stores I’ve personally visited over the past 15 years, only one had a flat entrance.

Of those five, only three had employees who didn’t respond to me as a visibly disabled person with obvious anxiety, and, in one case, hostility.

Sex toys – It’s one of the first things people think about when they think sex and disability – if, of course, they’ve managed to get past the “OMG disabled people? Sex? I think I have the vapours!”

For people who follow online media, anyway, the idea of people with disabbilities being sexual creatures is getting more familiar, and sex toys tend to feature in those narratives.

For example:

There’s a great reason for this. Toys can make sex play more physically pleasurable for people who have spinal cord injuries or other reasons for genital nerve damage. Or, they can help a person who has chronic pain, or limited mobility (or both) reach their butt. Or, they can help partners do the sexual thinggs they desire but that their bodies won’t allow. Or…the list has no end.

How do folks with disabilities get their hands on sex toys in the first place? Generally, the way anyone else does: stores, online, or cobbling something together from the kitchen drawer or bathroom cabinet. ON the surface, it’s easy-peasy. Another But, a lot of stores still aren’t physically accessible to folks with mobility impairments, with steps at the entrance or inside, no automatic doors, narrow aisles, and more. Some stores don’t keep sample versions of each product on the shelf for people to handle. At the stores where they do have all sample products out for customers, you can literally glance at, or hold, or sniff dozens of dildos (or anything else you’re looking at) to get an up-close-and-personal sense for which one is most likely to work for you.

As with anything, you’ll really need to try the thing before you know for sure if you’ll like it, and you’re not allowed to do that until you pay up!

Having this large display of products right there can improve everyone’s shopping experience, but it’s virtually vital for folks who can’t see to get a sense of the depth and breadth (no puns intended here) of what’s out there. It’s also pretty crucial for folks who need to be able to tell if their hands, let alone any other body parts, can use the toys.

Shopping at sex toy stores is unlike most other shopping experiences.

It’s fun. It’s sexy. It can be scary as hell or as normal as going to the drugstore to buy toothpaste. A trip to a sex toy store, for some, is the ultimate “OMG that changed my life” experience,; for others it can be a “Bletch! never again!” story their best friends tease them about forever.

But shopping for anything can be a big deal for people with disabilities – whether it’s being able to get to the store (or use the store’s Web site without cursing technology and punching the computer), or physically accessing all aisles and shelves, or receiving customer service that’s respectful and helpful, receiving customer service at all (I.E. not being passed over in favour of the person in line behind you), or even being able, with a significantly lower likelihood of being employed and having disposable income, to afford what’s being offered.

The rest of this post will look at how beliefs about and attitudes towards disability can make or break a shopping experience, and why that’s even more of a big deal when we’re talking sex toy shopping.

My own first sex toy shopping experience went something like this:

Me: “I’m looking for a G-spot vibrator.”

Shop Owner: Opens clear plastic box and places toy in my hands. “here’s one. It’s only $34.99. Here’s the button to turn it on. How are you going to be able to put the batteries in?”

Me: Touching the slender hard-plastic cyllinder with a curved end that looked better for fishing (minus the sharp edges) than for rubbing delicate tissue: “Does this actually feel good?” (What I wanted to say: It feels too hard.)

Store-Owner: “Here, let me show you how to put the batteries in. You unscrew this part–”

Me: “I’m not sure it’ll feel…?” (Silently: “Yes, I think I can figure out how to put the batteries in. Not really worried about that right now.”)

Store-owner: “Oh. You just have to experiment and find what feels good for your body.”

Me:”Umm, sure. I’ll guess I’ll try it… That’s all you have for G-spotting?”

store-Owner: “This one will be the easiest for you to put the batteries in.”

Me: “Okay, I guess I’ll try it.”

A minute later I’d payed my money and left, plastic bag full of toy in hand.

Was this just one of those store-owners who wasn’t interested in spending time with customers?

No. When we weren’t talking about batteries, she mentioned that she’d just spent an hour helping a guy pick out a toy for his wife. I’m guessing the guy didn’t have a physical disability. He sure didn’t use a wheelchair; that was one of the stores with steps.

My experience hardly counts as discrimination, but there’s a reason it’s stuck with me.

I walked into that store expecting to be treated like a customer, shown options, given space and time and information to make my decision. I wouldn’t particularly have minded being shown how the battery compartment worked, but in a more “oh, by the way” manner as part of giving me information about the toy. The store-owner expected that I was a blind person. Whatever a blind person meant to her, it wasn’t someone who comes to buy toys.

My needs as a sex toy customer weren’t any different from any other customer’s needs. The store-owner needed me to not be different from any of the other people she expected to walk into her store and buy stuff so she could pay her bills.

My needs were to have a sex toy shop employee or owner stay calm and professional at a time when, no matter how enlightened I was about sex toys, I needed their help and was feeling nervous, anxious, and like I wasn’t quite supposed to be doing what I was doing or spending my money on “frivolous” things. The store-owner’s needs were – well – to deal with this anxiety-producing situation of being faced with a blind customer as quickly as possible.

I’ve learned from friends and acquaintances who’ve run or worked in sex toy stores that how to support customers is a big part of their work. They want customers to feel welcome, but not crowded, supported, but not intruded on, cared for, but not too much.

They know that people who come into their store could be having any number of sexual insecurities, relationship problems, body image issues, and more. They know that sometimes their potential customers come in looking for answers without even knowing what the questions are.

Your standard retail experience, where you usually expect that a salesperson will greet you, cheerily ask if you need help, and check in with you every 4 minutes, might feel downright terrifying to some folks trying to buy a sex toy, or porn, or a bondage kit, or a bottle of lube. Most of us have been taught to feel such shame around sex in general, and especially our own sexualities, that too much input or friendly chit-chat could feel really invasive or scary. (Note: This doesn’t apply to everyone. For some people, that kind of friendly connection puts them at ease, but they need to be the ones who initiate it.)

but, for a blind person, who may or will need help – depending on how much usable vision they have, E.G. Can they read lube bottles, see the pictures on DvD covers, or see where the rainbow-coloured dildos are kept? – how does a sex toy salesperson maintain as much physical or emotional distance as the customer wants while still giving practical help finding items and reading packaging? Or, what if a person in a wheelchair wants to look at a dildo they can’t reach? Asking a sales associate to reach it and hand it to them isn’t necessarily an invitation to talk.

I think what makes customers with disabilities’ experiences in sex toy shops unique is that many sex toy store customers, regardless of ability, bring their own nervousness, fear, anger, or whatever to their shopping experience. Let’s face it — sex and sexuality carry huge emotions attached to them. Most of us have internalized shame around sex and sexuality in one way or another.

Going into a toy shop, especially in a small town, especially if you look different or distinctive, can carry a whole lot of emotions and fearful thoughts with it.

So, the average toy shop customer could be walking through the store with any one of these emotions, or all of them and more all at once! They’re counting on people working their not to judge them.

Disabled customers, in addition to potentially coming in with this emotional bagage, will also often be carrying around the anxiety of “How will I get treated by these strangers, today?” and for some “Will I even be able to get into the store?” That’s a lot of inner chatter and anxiety to be carrying around all the time.

Based on what we know about general attitudes around and knowledge about disability, it’s pretty reasonable to say that When a visibly disabled customer enters a store, some people working their are going to have big, complicated emotions of their own come up. People have huge fears and uncertainties around disability. Folks will often explain their awkward behaviours around visibly disabled people as “not knowing what to do,” or “not wanting to do the wrong thing.” Disability is, I think, still this really unfamiliar thing, at least when it comes to disabled people being out and about, earning and spending money, making sexual choices, window shopping, and just generally not being off in some special space. I’m still working out ways to help nondisabled folks, or folks with limited experiences around a variety of disabilities, understand some of the basics of giving assistance, without turning it into a list of “do”s and “don’t”s that ends up looking a lot like this guide.

A lot of the negative and nervous responses to disability from nondisabled folks come from a place of “OMG, what if that (being disabled) was me” and also from a place of “This person isn’t anything like me; I can’t relate.” The fear most people have around disability is deep and it’s unlikely that that fear isn’t going to afect the interactions of people who feel it with visibly disabled folks.

So, you’ve got a person looking for sex toys or sexually explicit materials, or condoms, or maybe they don’t even know what they’re looking for, and you’ve got a person feeling undone by the physical reminder of disability in front of them. Remember what I said above about hostility? Yes, that happened. No, it wasn’t fun, but that’s a story for another time.

I think the reason that being greeted with hostility in a sex toy store surprised me so much was that, by and large, people who work in sexuality-related fields have been some of the warmest, most respectful, most creative and disability-aware people I’ve ever met. But these have alsso been the people who recognize that both disability and sexuality are mega-giant issues that can undo people’s sense of security. More happily, these are also the people who realize that sex and sexuality can be fun, creative, and playful, and is something everyone has, and can access, if they want.

Oh, and in case you wanted to know: My instincts were spot-on (pun intended, maybe?) about that toy. It didn’t work for my body.

And, the toy store with no steps? Come As You Are, though, sadly, they had to close their doors in 2016.

Jan 312016
 

Sex and Disability

Portugal’s Plural&Singular Publishes Report on Sex and Affection

it’s impressive that disability sports magazines are conducting and reporting on sex and disability research. Better still, the Portugese study investigated the experiences of both people with intellectual disabilities and people with physical disabilities.

Earlier this month, Portugal’s disability sport magazine Plural&Singular published a special report on sex and affection issues among the disability community in the country. This report was a supplement to another report published a few years earlier, and answer additional questions around people with disabilities, their attitudes towards sex, and their sexual practices.

Read Parasport News’s full coverage here.

Sex and disability: What you’ve always wanted to know but were afraid to ask

Beliefs about disability and sex, and about sex in general, hold people back and can make the idea of romance and relationships (which is already scary for a lot of us) seem harder or scarier than it is. We still have this cultural idea that sex can only happen one way, or that there are right or wrong, more and less “real” ways to have sex, and that especially doesn’t help people whose bodies can’t perform those expectations.

“For a long time, before I had a partner that was willing to get creative with me, I thought I was bad at sex, because I thought there was only one way to have sex and I don’t do it in that way,” says Rose. “It wasn’t until I had a partner who said, ‘let’s figure out what works for both of us’ that I realized I’m good at it and enjoy it a lot more,” he says.

read the whole article here.

What if I asked you whether you can have sex?

Strangers don’t need to know why someone looks the way they do, or how impaired they are, and certainly not whether or how they can have sex.

Many think it’s always necessary for disabled people or people with facial differences to take every opportunity to educate. Curiosity doesn’t need to be satisfied.

People forget their manners when talking to me and others with disabilities and facial difference. They unleash their thoughts and prejudices before engaging their brains.

Read the rest of this post.

Sexuality

IN 2016, people are still perpetuating the myth that some kinds of sex are more real, or valid, or better for us than others, and they’re using science, or what they’re passing off as science, to do it.

There are studies that try to tell us what we should or shouldn’t be doing with our bodies, or that try to tell us that doing some sexual activities (like having multiple partners or watching porn) are indications that there’s something medically wrong with us.

When we look closer at these studies, we see that most of them don’t stand up to what we know to be accurate science; for example, they don’t use large sample sizes or they aren’t designed to make sure that the researcher’s beleifs or biases don’t get in the way of what the data is actually saying.

The only sexual activities that are wrong or bad are ones you don’t enjoy, or ones that can hurt you or someone else. By all means, if you personally don’t believe in watching porn, or in masturbating, or in anything else, you don’t have to do those things. Feel free to own that you don’t like or believe in any sexual practice, but know that the research, by and large, doesn’t support cultural beliefs that limit people’s sexualities or sexual practices.

Trust a Scientist: Sex Addiction Is a Myth

The idea of “sex addiction” has become really popular, but the research shows that compulsions for sexual activities, or for watching porn, don’t work the same way drug and alcohol addictions work. The brain is not chemically addicted to sex or porn.

A sex addict without sex is much more like a teenager without their smartphone. Imagine a kid playing Angry Birds. He seems obsessed, but once the game is off and it’s time for dinner, he unplugs. He might wish he was still playing, but he doesn’t get the shakes at the dinner table. There’s nothing going on in his brain that creates an uncontrollable imbalance.

Read the rest of this article to learn about the data we have on sex and compulsion.

There Really Isn’t Any Bad News for People Who Like to Masturbate

Another article refuting bad science around sexual activity.

I was surprised to read that researchers are still supporting the idea that one kind of sex is better for us than another.

Contrary to all the myths out there, masturbation isn’t bad for us. We won’t get hairy palms, or go blind or – hey, wait, isn’t it interesting that so many of the traditional prohibitions aginst masturbation are threats of disability or physical difference? That’s definitely something to think about: The ways we’ve tied negative beliefs about disability up with negative beliefs about sexuality.

The only time masturbation is bad is if it’s something you don’t want to be doing for yourself. The only time it’s not going to feel good is if your personal experience is that other sexual activities ffeel better.

As a sex educator, I can’t imagine telling anyone that penile-vaginal sex is inherently better. For one thing, not everyone is in a couple, and not all couples have a penis and a vagina between them. And even for cisgender heterosexual couples, PVI is only one of countless potentially pleasurable behaviors.

Read more here about masturbation research.

Jan 162016
 

Maria R. Palacios is a poet, author, spoken word performer, motivational speaker, social change advocate, disability rights activist, and workshop facilitator.

I met Maria and saw her perform at the Breaking silences Sex and Disability Conference. IN person, Maria is very much like her poetry – warm, funny, honest, and sassy.

Maria graciously agreed to answer a few questions.

1. I know you’ve been performing with Sins Invalid for a long time. How did you get started with the group? Was working with Sins Invalid the first time you’d performed publicly about sex, intimate relationships, and disability?

Sins Invalid’s Leroy Moore found me through myspace and asked me to audition. He had come across some of my poetry and thought I’d be perfect for their show. As the natural procrastinator I tend to be, I, of course, did not respond right away, but Leroy can be persistent so I took my camera and recorded a few pieces for consideration, never in a million years imagining I would be chosen. But I was. I guess the rest is history. Although Sins was my first time performing in a big theater, I had been writing about sex and disability and love and relationships for a while. Sins Invalid is one of my most treasured experiences as a performer and as an advocate/activist on positive crip sexuality.

Read a transcript of hunger here.

2. When did you first start calling yourself the Goddess ON Wheels? What does the name mean to you? Can you talk a little about how your art and activism connect?

My definition of a goddess refers to a woman who focuses on self-love, believes in herself and her personal power and is willing to share it with others. I truly do believe there is a Goddess within every woman, but we only realize it upon discovering our own beauty and our own strength.

My Goddess persona evolved in my early twenties when while working in the domestic violence field, I got to see firsthand just how strong and powerful women really are. Embracing my own Goddess persona helped me to help other women to also see their own Goddess reflection.

I am always both artist and activist. I feel the two are very interconnected and feed off of each other. I think the combined energy of both, art and activism, is what fuels the passion I bring on stage. I love to perform.

When I’m on stage, I feel like I’m in my element….I feel like I’m home.

3. What would you most like disabled people to know about sex, sexuality, and intimate relationships?

I want people with disabilities to know:

1) Our bodies belong to us.

2) We are worthy of being loved, and we have everything we need to give and receive love

And 3) like one of my poems points out: confidence is sexier than the body.

4. What would you most like nondisable people to know about disabled people’s experiences of sex, sexuality, or intimate relationships?

I want nondisabled people to realize that people with disabilities are simply people and that our needs for sexual affection are no different. I want them to know we are as hot and hungry as everybody else as it relates to sensuality. This is, perhaps, a continued message throughout my poetry. I feel that we must constantly force our crip truths on the nondisabled world otherwise we will buried by their ignorance and discarded as unsexy and asexual.

5. Whose work (artistic, activist, or otherwise) do you turn to over and over again for education or inspiration?

I am a huge Frida Kahlo fan and consider myself to be her poetic reincarnation. Although she seemed to have lived an unhappy life, the gutsy honesty of her paintings speak my truths and inspire me. Few even realize Frida was a disabled woman of color whose outspoken sexuality was scandalous during her time. I seem to be as shameless as Frida was as it relates to love and sex and the expressions of my muse. Last July, I released a beautiful poetry collection dedicated to my relationship with Frida – Dressing Skeletons: A Poetic Tribute To Frida Kahlo.

6. What are you working on right now? What’s coming up for you in the next year? Where can people see you perform or read your work?

The year ahead promises great opportunity to share my various projects.

I just released a massive anthology of very intimate poetry focusing on sex and disability. Poetic Confessions Volume I is available from >Amazon and CreateSpace.

Volume II is being edited as we speak.

I am very excited about these and hope to bring empowerment and sexy energy to those who read this work. One of my goals for this year also involves producing a recorded version of these collections. More information on other projects and to see some of my performances, people can visit my website www.goddessonwheels.com.

Dec 312015
 

2015 really does feel like it was a turning point – no, a launching pad – for sex and disability conversations.

Here’s just a small sampling:

Mainstream media outlets approached sex and disability in ways they rarely have before, including coverage from the CBC, Cosmo, The atlantic, and The Sydney Morning Herald.

Toronto saw its first disability-friendly sex party organized by the founders (both disabled) of Deliciously Disabled.

The ever-popular Huffington Post’s “gay voices” section included a regular column on sex and disability for queer folks, including an article on just what it was like to plan that sex party anyway.

Wright State University held it’s first ever Sex and Disability Conference

See my coverage of Day 1, Day 2, and Day 3.

An organization in France published the first two issues of a quarterly magazine on love and sex written by and for people with intellectual disabilities. Titled “J’existe et je veux” (“I exist and I want), this magazine might be the first publication of its kind released anywhere, in any language.

Disabled women presented a panel on disability concerns, including sexuality at a prominent feminist conference. Even in 2015, inclusion of disabled women in feminist spaces is rare and noteworthy.

The Disability Visibility Project interviewed Olivia Davis about attitudes towrds disabled people’s sexualities, and the need for open, honest conversations about sex.

Disabled people were also writing, writing, writing in 2015, publishing raw, honest, educational pieces including everything from 3 Ways You Might Be Marginalizing Disabled Asexual People (And What to Do About It) to Being Disabled, Kinky, & Into BDSM – and of course Kylie Jenner’s sexualized photo shoot with wheelchair as prop stirred up all kinds of sex and disability commentary by disabled voices.

And then there were books.

I think this might have been a record year for sex and disability related books.

Already Doing It: Intellectual Disability and Sexual Agency

QDA: A Queer Disability Anthology (Reviewed here.)

Poetic Confessions

Trophy Wife: Sexuality. Disability. Femininity.

Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement

These two aren’t specific to sex and sexuality, but are incredibly meaningful contributions to disability history.

Fading Scars: My Queer Disability History

NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

What were your 2015 sex and disability discoveries?

Dec 212015
 

“An unexamined public kiss is a privilege, enjoyed by those who are not marked out as the “other” by a stranger’s gaze. For me, a kiss is a political act of lustful resistance, whether I want it to be or not because it highlights those things people don’t want to think about let alone talk about—that people with disabilities are sexual and that some of us are gay.”

— Jax Jacki Brown | The Politics of Pashing from QDA: A Queer Disability Anthology

A kiss as resistance – For queer people who have so often had to hide who they are so they could exist safely in the world. For disabled people who just want to be seen in public spaces without being stared at. For disabled queer people who are so often doubly erased and doubly objectified at the same time.

I think QDA: A Queer Disability Anthology is like that kiss, unapologetic, brave, and beautiful. It’s like that kiss, bringing LGBTQ disabled people’s beauty out to shine. This anthology fits snugly in the intersection of disability, sexuality, and gender.

QDA is exquisite! It’s politics, passion, and really good writing all rolled into one.

I knew we were getting something beyond amazing when I saw author and editor Raymmond Luczak named as the editor for this book. I’ve read several of his previous anthologies, cried tears of self-recognition in public while reading Eyes of Desire II: A Deaf GLBT Reader.

Now, he’s pulled together stories, essays, and poems from forty-eight writers (including his own explicitly honest poetry) – forty-eight writers living in different places, with different disabilities, having diferent gender identities and sexualities, and, sometimes, holding diverging goals and desires – and he’s made the work fit together like a jigsaw puzzle.

I really enjoyed the contrasts, and outright surprises, in this anthology, such as contradictions placing a lyrical poem about pain and love (D. Allens Posession) right before a snark-filled personal essay on erectile dysfunction (Gregory Villa, Limp). Meg Day’s poem On What I Didn’t hear you Say is full of nonsense words showing how complex language is for people who struggle to hear or speech-read another person’s spoken word, while Whittier Strong’s On Inheritance uses clinical-sounding quotes about mental health as structure for a story on child abuse and emotional pain. The contrasts and surprises continue throughout the book, which, by the way, includes some of the best poetry, nonfiction, and short story writing I’ve seen in years. Because disabled people are so often seen as less capable, or as living less full lives than nondisabled people, I think works like this, that showcase disabled writers’ artistry and skill, are extra important.

Maybe the best part of this writing is the richly textured portrait of queer disabled people’s lives, from the work they do, to the sex they have (or want to have), to the yoga classes they attend and the bars they hang out at. When I read this, which I’ve done about four times now, I can almost see, hear, smell and taste the experiences held in the words of these pages.

For the rest of this review I’ll be looking mostly at how QDA’s writers tackled the themes of sexuality and relationships. But, I do want to mention a couple of points that really made me sit up and take notice.

1. Liv Mammone has some advice for nondisabled participants in a disability-related poetry workshop. This is, I think, the best list of advice (with plenty of examples that should make people cringe, and laugh) for both respecting difference and accepting that people with disabilities are still people, and that, overall, disabled participants are there to discuss poetry.

Some of the advice:

  • When asking about my disability, please remember you have Siri at your beck and call, and that what you really need to know will come up in the poems.
  • Your head had best be a microscope. Ask yourself why you’re here. But question my motives, too. Slam your hand hard on my buttons.
  • Speak for me, not over me.

2. InDisability Made Me Do It or Modeling for the Cause, Kenny Fries finishes with the observation that The Venus de Milo, with all her scars and missing body parts, is considered beautiful; people with scars and missing parts are rarely looked at with wonder and admiration. That brought me up short. Why do we accept, even celebrate, something in art that we reject in flesh and blood people?

— — — —

It’s a strange irony that disabled people are assumed to not think about, let alone want, sex, while queer people are stereotyped as thinking about nothing else. Where does that even leave queer disabled folks?

Luckily, the truth is far more complex – and beautiful – and QDA is here to help us see that.

In Vagina Resigning, Liv Mammone shows us that the sexual part of herself is so much more powerful, so much more eager, so much more reliable and pleasurable, than the rest of her disabled body. Andrew Morrison-Gurza and Ashley Molion both write about how they desire passionate abandon, not the careful treatment or chaste touches they get from most people, even lovers.

Barbara Ruth’s poem 8 Ways of Being Disabled in Love speaks to a reality most nondisabled people don’t think about and probably couldn’t imagine – a world where couples keep on touching, keep on loving, even with medicines, hospitals,and pain that won’t go away.

IN Possession, D. Allen puts this in poetry:

Often I confuse pain with a poverty
of love. I don’t have hands today
means I can’t use them to touch you.

Sarah Ibrahim goes deeper into this as she explores how one person’s pain can bring lovers together and tear them apart. D. Allen spells out, in prose this time, this deep relationship between bodies, pain, and lovers:

You rub my back during a pain flare and I remind you to avoid the spine. Often you remember on your own, now. I say the spine because it is easier than saying my body feels broken and your touch makes it real.

Because we really can’t untangle relationships, of any kind, from the ways we feel about ourselves, from the ways we live in our bodies.

It’s complex enough to sort out relationships with lovers and partners. When we throw family into the mix, it often gets positively messy.

Many of QDA’s writers share the deep conflicts they’ve had with family. Joel Gates starts his essay Outcast: Deaf, Gay, Christian: “All my life I could never fit in anywhere.” The only way he could literally survive this isolation was to finally tell his family and friends that he’s gay. Joel has payed a big price for that: He and his family are “drifting apart” and he’s had to build a family of his own, with his fiance, and new friends at his new church lead by a gay pastor.

Disability is an isolating experience. As is having a gender or sexuality people don’t understand. harder still when people who claim to love you blame your queerness on your disability.

Brenna Syr captures this in a way that makes my heart ache every time I read it:

I called my sister for comfort. I spoke to her of my pain: the physical and the relational.


“Brenna, don’t you think your arthritis might get better if you stopped deciding to be gay?”

…I live in constant pain, and a part of me will always believe that it is caused by a God who cares not for my happiness, but for the genitalia of my partners.

But there’s laughter mixed into QDA, if not from family, than from and with lovers and partners.

Larry Connolly thinks he must be The Worst Husband You Can Imagine. He loses patience with his husband John’s slowness and limited mobility, noncompliance with medical instructions, and, worst of all, his habit of leaving dirty clothes and dishes all over Larry’s nice neat house.

Finally, he goes too far, and there I am standing in the kitchen doorway, in an apron, brandishing a rolling pin and screaming, YOU LEFT YOUR GODDAMN WHEELCHAIR IN THE MIDDLE OF THE LIVING ROOM.
Silence covers the earth. We know a line has been crossed.
It doesn’t really matter what straw broke this back, or how exactly we got to this place on this day, but we look into one another’s eyes, catch the tail end of whatever soul dares to remain, and begin to laugh. And laugh. And Laugh.

Enough said.

There’s a theory that queer people and disabled people share a common experience, that these two groups are united by having experienced rejection from their families. I have no idea how true this sense of connection between the communities actually is.

Writers in QDA have not found queer communities welcoming or accessible.

Kit Mead hasn’t been able to find their queer community. They’re autistic, and the fast paced noise and chaos of clubs, pride parades, and campus LGBTQ student meetings causes too much sensory stimulation, meaning that Kit shuts down and can’t interact. Not being able to access queer community makes Kit feel invisible as a queer person, especially since their queerness has been discounted as “symptoms” of autism, not expressions of queer identity.

Maverick Smith, Invisible Within the Ten Percent, spells out what is happening behind this lack of accessibility in queer spaces:

Pride is a rainbow blanket smothering difference
it makes words palatable to diverse communities
but even as folks’s lips shape these verbs for others’s ears
ableism & audism are omnipresent during Pride

I loved and learned from every piece in this book, but the one that gives me chills, the one that keeps pulling me back to read it again and again is John Whittier Treat’s fictional short story A Girl For Us.

Hal is in his mid-thirties, works at a grocery store, loves going to the planetarium, has a best friend named Stan, and has intellectual and cognitive disabilities. Without asking what he wants, his parents decide to put out a personal ad to find Hal a girlfriend. Maybe no one is really interested in what Hal wants, or thinks he can even know what he wants, but Hal is the only character in this story who knows or acknowledges that something is wrong with this set-up. In fact, Hal understands almost everything that’s happening around him.

“Hal, how are we doing?”
“Doing?”
“Well, this is our second date, isn’t it?”
Hal thought, I haven’t ever asked her on a date. Mom and Dad have.
“I guess.”
Carolyn put both her hands flat on the tablecloth.
“Do you like me?”
Hal panicked. He wasn’t sure how to answer. If he said no, she might get mad. If he said yes, she might think I want to marry her or something. It was only then that Hal thought to answer truthfully.
“I don’t know you, Carolyn.”
Carolyn smiled. “That’s right, Hal. We don’t know each other. But everyone has first impressions.”

You’ll need to read the story to find out what Hal’s first impressions are, and what he’d tell people if only they asked. Like all well-written fiction, the big picture is slow to emerge, and is like a slap in the face when it does.

***

Thank you to Raymond Luczak for providing a copy of this book in exchange for an honest review.

We need more books like QDA, as starters for conversations, as works of art, as resources for people trying to survive and love themselves.