Jul 212016
 

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

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

Noah started the presentation with some definitions and language etiquette.

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

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

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

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

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

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

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

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

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

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

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

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

What to do when this is your, or your lover’s, reality.

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

To help with communication during sex, people can try:

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

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

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

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

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

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

***

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

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

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

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

More About Noah Eidelman

Noah Eidelman is based in Montreal.

From the conference Web site:

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

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

Sep 162015
 

I cannot talk about illness and how it affects me, without mentioning how it is tied to my immigration status, or my
choices and access as a queer upper class woman. The axes of benefits and struggles at which I find myself leads to a particular set of options. From there, I make choices. There, I live daily.

— Nitika Raj, The Wholeness Project

Instead of honoring difference, we are asked to assimilate. Supposedly, this is to help us but it only inevitably erases who we are and diminishes the experiences we face.

— Kay Ulunday Barrett, Constant Dissonance: Our Noise is Dangerous

Criptiques is a collection of essays and stories that challenges ideas of what it means to be disabled without ever erasing the true, beautiful, frustrating, painful, uplifting realities disability brings into our lives. Disabled people ar so often seen as one-dimensional human beings; defined by the pain we’re in, or the limmits we have, or the beliefs of the people who look at us. This book, written entirely by disabled people, moves past that narrative of being observed, past the how-tos, the statistics (though there are plenty of those, into what the people behind those statistics actually look like, feel, do, and experience each day.

Who are the people of Criptiques? They are artists, scholars, musicians, activists, deep thinkers, sexual beings, mothers, lovers.

What does it mean to be “criptical?” It means equl footing and value between Stefanie Hillary’s academic piece on frida Kahlo, art history, and disability, and Leroy Moore’s provocative Droolilicious, a Krip-Hop piece.

It means exploring the usual disability-related topics in unusual ways. Danine Spencer lays out the grim unemployment statistics for women with disabilities in the United States alongside her own struggle with physically not being able to meet today’s demanding work environments. Bethany Stevens shares the many ways her former workplace, a disability policy research department, was inaccessible and unwelcoming. In What Should you call me?, Emily Ladau, who has been disabled all her life, shares that nondisabled disability advocates have questioned the sincerity of her advocacy based on her objections to using person-first language.

Being criptical means introducing the unexpected.

In most disability anthologies, we’d expect to see at least one piece on the miracles of technology. Instead, Eva Sweeney tells us how and why, for her, using a simple alphabet board makes communication faster and easier than it would be with a computerized communication device.

We hear about sexuality: From Elsa henry, possibly the only blind burlesque dancer in the world. From Jen Rinaldi and Samantha Walsh, who explore the ways their experiences as young disabled women were affected by the assumptions that all young women start dating men. From Alissa Hillary, who shows us how autistic people’s sexuality is erased. From Leroy Moore, who shares how his drooling, a part of his disability he was always told to control, is exciting and sexy to an intimate partner.

Criptiques makes its readers wake up and see the world differently. or me, that “aha” moment happened while reading Ben G.’s On Radicl Empathy and Schizophrenia: “To say that those years of my
life correspond to a brain problem and nothing more, is to … reduce my own experience of myself, and at worst, to rob me of the experience altogether.”

There is more in this book, on our collective fears of aging and death, on body image and beauty standards, on parenting, as a disabled person, on (usually unpleasant) encounters with the medical system.

Criptiques should be required reading in most university classes. It’s hard-hitting and funny, sad and rhetorical. It’s the kind of book I could – and have – read many times and still learn something new or still feel the flutter of my heart opening in joy and admiration for these writers.

And I don’t just want to se this book on the shelves of Disability Studies students. This needs to be part of the curricula for many disciplines: gender studies, American Studies, occupational therapy, pre-med, nursing, social work, and more. Instead of teaching disability as a separate subject, Criptiques would allow professors to teach common topics like anti-racism, body image, medical and legal concerns, etc. starting from a disability or criptical perspective.

A life-changing book for anyone who reads it.

You can purchase a paper copy of Criptiques here.

Or download a free, PDF copy here.

Aug 312015
 

August brought us a lot of personal narratives, powerful, funny, sad, and thoughtful.

Topics include respectful personal care, dating, not-so-accessible sex toys, a moving day-in-the-life of a support worker for disabled folks who’ve experienced sexual violence, and so much more.

Disability Rights

A Bill of Rights as an Autonomous Disabled Person

No One Wants to Be Normal: So Why Are We Awkward Around Those Who Are Different?

On Not Being “Pretty”

Disability Housing: Living, Supporting, and Loving Intentionally

Gender, Sexual Expression, and disability

Gender Differences in Asperger’s: Being a Trans Guy and a Female-Socialized Aspie

Lawsuit: EHarmony Discriminates Against the Blind

Boys in Chairs and Their Toys: My First Experience With a Sex Toy

‘Deliciously Disabled’: Toronto’s Sex Ball for People With Disabilities

Sexual Healing

Dateable Self-Esteem: Danielle Sheypuk, Ms. Wheelchair NY, Discusses The Evolution Of Sex In The City

Secrets to Sexual Self-Discovery: Going deeper Is Key – Wheelchair Accessible Living

Sexual Abuse and Disability

Sexual abuse of people with learning disabilities is too often overlooked

Arts program helps women with disabilities navigate sex, relationships