Undesirable: Toxic Romantic Dreams, Disability, Sexuality and Relationships

sexy ISA

Image Description: A stenciled modified image of the International Symbol of Accessibility, A presumably male stick figure in a wheelchair being straddled by another stick figure who is presumably female because of the addition of a ponytail hairstyle.

CW: This post contains discussion and descriptions of sexual harassment, violence and bullying

Considering the Kathy Lette article in the Daily Mail (which I wrote about here and Carly Findlay wrote about here). I want to offer my own narrative of disability and sexuality, a narrative that isn’t driven by a parent or other third party.

It is often said that disabled people are perceived as nonsexual and this is certainly the experience of some people. I previously wrote a response to this New York Times piece Longing for the Male Gaze. As problematic as I found the author, Jennifer Bartlett’s romantization of sexual harassment, I do understand it. While I do not and never shared that particular longing. I do understand the creation of problematic desires and fantasies created around cultural expectations of romance and relationships. My personal experience, however, was not so much marked by being viewed as nonsexual but rather simply undesirable.

In fact, my sexuality was not only acknowledged it was used as a weapon against me.

For as long as I can remember I have been excluded. It was the first form of bullying that I experienced as a child. Starting in kindergarten and continuing through to the end of high school. While that exclusion in those very early years was certainly not tinged with romantic rejection—we were all too young for that—it set a precedent for my being denied even friendly personal relationships. It created a deep desire within me for inclusion and acceptance.

As I got older the bullying became more direct and aggressive. From about grade six onward, harassment from girls in my class often contained aspects of sexual humiliation. From being cornered at my desk and being told that if I wasn’t already a lesbian I would be within a year to mocking me when they realized that I didn’t wear a bra.

As a physically disabled autistic person, bras have been a source of stress since I started wearing them. They are often inaccessible and more often uncomfortable. Yet, within days of the first comment about my lack of bra (I really didn’t need one), I started wearing sports bras (the only bras I could stand to wear at the time) just to stop the comments.

Eventually, the bullying turned to my relationship status (or more accurately my lack of one). The girls first dropped a note off at my desk which said: “Maybe if you got a boyfriend, you’d have more friends”. They later cornered me to deliver this message in person. I clearly learned that being in a romantic relationship might lead to broader social acceptance. I was, however, unable to acquire the boyfriend necessary for this entrer into social acceptance.

In elementary school, I was told I needed a boyfriend to be socially valuable. In high school, that message continued but it was also clearly accompanied with the message that no one would ever want me.

The very idea that someone might be interested in me was unthinkable and the source of much amusement for my classmates. In grade 9 one of the girls’ favourite torments would be to try and determine who I had a crush on. They used whether I blushed as evidence—I am very pale and blush easily—they got a lot of amusement out of embarrassing me in front of whatever boys happened to be present.

In high school, the boys joined in this abuse. It started with my being mock proposed to repeatedly to the uproarious laughter of the audience.

It culminated into an incident in grade twelve where four boys cornered me alone in an empty classroom and explicitly described pornography in detail and mocked my embarrassment, telling me that if I couldn’t handle such information that no one would ever want me.

When I reported the incident to the school, I was told that I probably misunderstood what had happened and that the boys probably didn’t realize that they were bothering me. Because disabled women can not only experience sexual harassment, they can also have it minimized and ignored when it happens.

The idea of dating me was so much a joke and a repugnant idea to my male peers that having it suggested that they were dating me was an insult. A rumour started that I was dating my science partner (because if you so much as speak to a member of the opposite sex in high school, regardless of context something sexy must be going on). He blamed me for the rumours. He got so sick of denying them that he eventually found me alone in a hallway one day and screamed every insult that he could think of at me. There was a small justice in this instance because he didn’t see the health teacher come up behind him and witness the entire tirade. He was swiftly and loudly told off.

Through all of this, I was hyper aware of what made me different from the other girls who were not treated with the disgust and scorn that I was. Namely, the fact that I had cerebral palsy. I became hyper aware of anytime someone might have to come into contact with my left hand (the most visible aspect of my CP).

As a kid, I participated in a lot of group activities whether it was church youth group, brownies or that time I participated in French Youth Parliament (my French really wasn’t up to the challenge). As a consequence, I frequently found myself having to play ice breaker games. One that always seemed to be played was where everyone stood in a circle and grabbed the hands of random people across from you. You then had to twist and wind between people’s hands to try and return to an untangled circle.

Every time this activity was announced, I had a moment of panic because I always feared that when I reached my left hand out, that no one would take it. Though someone always did.

It wasn’t until I was 22 and in a cultural exchange program that some failed to take my left hand when circumstances dictated they should. We were dancing to Malian music in a line holding hands and when the Canadian group leader joined the line he grabbed wrist instead of my hand. I was startled and just blurted out “you can take my hand”.

“Are you sure?” he asked, he clearly didn’t seem to want to.

“Yes”, He did it reluctantly and soon decided to leave the dance.

These fears of being rejected in social settings and the continued messages that I was undesirable did not culminate in my wanting to be perceived as a sexual object like Jennifer Bartlett but they still left me with toxic dreams about relationships.

I didn’t dream of being seen as a sexualized ideal. I just wanted to be loved and included. Getting this attention from one person would have been enough. I was desperate for it.

The desire to be loved and wanted is not in and of itself dangerous or unhealthy but it can be when you’ve been told over and over again that you are undesirable and that this undesirability is also what makes you a social outcast. I was also clearly told that I was so undesirable that to be seen with me would have social consequences for anyone willing to be with me. This lead to expectations that any relationship I had would likely be isolated from the rest of the world. While I heavily romanticized this scenario as a teenager and young adult, I am well aware now that this kind of dream and the level of desperation that I had for it, left me at serious risk of abusive relationships.

This is evidenced by how I behaved around and responded to boys I had crushes on. I wanted so badly to feel loved, that I would pretty much develop a crush on any boy who would initially speak to me with any degree of kindness. When I was 16 this meant I was infatuated with a boy who was initially very charming but in reality, had a deeply misogynistic streak to him.

I can’t remember what precipitated the incident (I think I had said something sarcastic to him) but one day when we were rehearsing for the school musical he slapped me hard across the face. It was witnessed by the stage manager (another student) who came over ready to punch him for having hit me. I talked him out of it and while it was probably best that they didn’t get into a fight in the school gym, I wasn’t trying to de-escalate a fight. I was defending the person who had hit me. I still wanted him to like me.

I am not sure when exactly when I was able to start thinking critically about those toxic romantic dreams. I suspect it began after I actually found social spaces where I was accepted as a friend. This didn’t do anything to ameliorate my romantic prospects but I did finally have a space where my desirability as a sexual or romantic partner was not held up as necessary for social inclusion. A relationship was not a social status symbol and association with me was not cause for a person to be mocked.

The thing is that this didn’t really start to happen until I reached grad school. I was also in Disability Studies which attracts a disproportionate number of disabled scholars. In my master’s program, I was one of three people with cerebral palsy and there were many other disabilities represented.

This was huge in terms of creating a sense of self-worth and community but I shouldn’t have had to wait until I was in my late twenties and surrounded by people with common experiences to be accepted.

This is why first person narratives of disability are so important, particularly in relation to sexuality because we can talk about the social impact of being deemed undesirable. Third person narratives like those of Kathy Lette about her son really just buy into the social stigma and work with it rather than challenge it.

Her son asked her if he would ever get a girlfriend. A question to me suggests a desire not just for sex but for a relationship, a prolonged romantic experience. Lette’s response was to consider hiring a sex worker which really meets none of those desires even if sex is a desired part of a romantic relationship.

Considering hiring sex workers as a solution even in part to the issue of the widespread cultural disinterest and even disgust with the idea of sex and romantic relationships with disabled people is in some ways to accept and fail to challenge those ideas.

A sex worker is not going to offer a relationship beyond what is agreed and paid for. Disabled people know this. It is not a comparable substitute for actually being accepted and wanted.

I want and deserve meaningful human relationships both simply social and romantic. These are not things I can buy. In order for me to be able to have them. I need people to actually interrogate why disabled people aren’t seen as options for romantic partners. I need more than the platitudes I received from a male friend at 18 when in a moment of bravery I shared my insecurities and the sentiment that no one when I fantasize about an as yet unseen and unmet lover, thinks of someone like me. I even asked him outright if he had ever thought about dating a disabled person.

He deflected by magnanimously claiming that he was open to falling in love with someone who was disabled. He would however not answer my question directly because of course, he had never actually considered it. He, however, wouldn’t directly admit as much because to do so would be to admit to an internalized bias and discrimination.

I want people to be aware not only that disabled people are sexual beings but also be aware of the widespread messages that they tell each other and disabled people about how we are undesirable. I want them to understand the harm that causes and how it sets people up for potential abuse. It goes beyond them simply not considering having a disabled partner.

I want those ideas directly and actively challenged. I want to see disabled people culturally framed as beautiful and I want this to happen without a flurry of think pieces on how progressive it is. Those think pieces are evidence of how strange it still is how people still feel the need to applaud it. The change will come when disabled people can be portrayed as beautiful and sexual and the response is to agree and admire that beauty without qualification.

I don’t want any more disabled people growing up to be told that no one will want them just because they are disabled.

 

 

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Issues of Disabled Sexuality and Consent: When Parents Get Involved in Their Children’s Sex Lives

 

sexy ISA

Image Description: A stencilled modified image of the International Symbol of Accessibility, A presumably male stick figure in a wheelchair being straddled by another stick figure who is presumably female because of the addition of a ponytail hairstyle.

 

Australian-British author, Kathy Lette considered hiring her son a sex worker*. She considered doing this because her son is autistic. This narrative in and of itself is not new or particularly shocking. Parents have discussed considering hiring their disabled sons a sex workers before. I’ve seen narratives written by disabled men talking about their experiences hiring sex workers. The thing that makes Lette’s article so horrifying is the lack of involvement and consent from her son as she goes through her consideration of hiring him a sex worker.

There is also the fact that this narrative comes from her and shares a lot of extremely private medical information about her son. The over sharing of private information about disabled children is inappropriate and exploitative generally but is particularly heinous in the case of Lette as she is literally using her son’s story to sell her novels.

Lette describes her process of seeking a sex worker for her son as follows,

Not one, but two of the mothers I’ve befriended through the National Autistic Society suggested that we take our sons to a brothel. I mean, what kind of mother gives her son the sort of advice championed by Silvio Berlusconi?

But even the temporary solace of sex might do something for his flagging confidence.

Is soliciting a prostitute a seriously abnormal thing to do? Yes. But mothering a child with autism tends to recalibrate one’s view of normal. And so we asked our male friends how to go about it – only to be met with blanket non-co-operation till one pal replied facetiously, ‘Great idea. I’ll just run it by my wife, shall I?’

I asked a French girlfriend who is very worldly. ‘How can you, a feminist, condone prostitution?’ she responded with a searing glare.

Soon after, I was driving past a red-light district near Liverpool Street station. On impulse, I veered off the main road into a labyrinth of dark streets. As women skulked towards me out of the shadows, my heart thumped against my ribcage. What the hell was I doing there? I was more likely to be found at a book club than on a kerb crawl.

Besides, even if I did pick up a prostitute, how would I negotiate the transaction?

No, this was a bad, bad idea. I waved my hand back and forth like a windshield wiper to shoo the women away. When it came to parenting, I obviously needed a hat marked ‘trainee’.

It also crossed my addled brain that I was contemplating an illegal act. Kerb crawling for your child would prove a pretty hard concept to explain to a judge. And, how would I survive in jail? I’m a writer. The only wound I’ve ever received is a paper cut.

I went into spooked deer mode and bolted.

At no point, does her plan involves discussing it with her son. I can only imagine the bizarre and awkward scene that would have followed her impromptu “kerb crawl” if she had in fact succeeded in hiring a sex worker and had taken her home to her unsuspecting son.

“Hello, dear, I hope you’re having a good evening. By the way, I’ve hired you a sex worker. Here she is. Go at it. Have fun.”

The best case scenario is simply a lot of awkwardness. The worst-case scenario is that she, having presented her son with a sex worker, ends up pressuring him into a sexual experience that he does not want and is thus along with the sex worker complicit in a sexual assault.

This narrative falls into the egregious stereotype of disabled male sexuality which suggests (quite incorrectly) that their sex drive is simply constant and completely undiscerning. The very idea that you could simply present someone with a willing partner and assume that they would automatically be attracted to that person and in the mood for that sexual liaison is absurd.

The level of hopelessness that Lette describes, about her son ever finding a girlfriend (which he does eventually do all by himself) is also unnecessarily exaggerated. He is in his early twenties. Contrary to narratives in popular culture, it is still not entirely uncommon for people regardless of disability to have not had a successful relationship by the time they are twenty-one.

I am also struck by the masculine centred nature of these disability and sex worker narratives. The horrific failure of consent that is the Lette example aside. These stories are so frequently couched in a need to explore and affirm sexuality. But they are almost always focused on men. I have never heard a narrative written by a disabled woman or from the parent of the disabled woman in which they seek a sex worker. A 2005 survey suggested that 22% of disabled men had sought the services of sex workers as opposed to only 1% of disabled women had done so.

When it comes to narratives of providing supportive assistance in facilitating sexual relationships for disabled people, women are left out. The social taboo of women hiring sex workers completely overrides the narrative of affirming sexuality that often accompanies stories about disabled men.

This is problematic not because women aren’t seeking sex workers but because it reinforces the idea that men are in some way entitled to sex while reinforcing the idea that disabled women are sexually passive and that disabled women having sex or seeking sex may be in and of itself cause for concern.

Lette’s article reinforces this idea of male entitlement to sex through her complete lack of consideration of consent. It is simply assumed that this is something that he would want and be willing to participate in.

She also entirely fails to consider or address the way that disabled people have been culturallyy desexualized that has led to the conclusion that relying on sex workers for giving disabled men, sexual experiences in the first place. She simply laments that women will not think outside the box. She doesn’t look at how those boxes are created and socially maintained or how they might be broken open and destroyed to include disabled people as socially acceptable and desireable sexual and romantic partners.

Ultimately, the expression of sexuality by disabled people should be led by them. Even in circumstances where third-party assistance might be necessary to fulfil the expression of sexuality, the decision on how and with whom should always come from the disabled person themselves not from a parent or anyone else.

*Lette never actually uses the term sex worker in her article, choosing instead to use more disrespectful language.

 

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Let’s Talk About Disability, Periods, and Alternative Menstrual Products

There is so much I want to say about disability and menstruation. So much that I could never fit it into a single post. I have noticed that there is very little written about disability and menstruation generally and what little there is is most often not written by disabled people. As a result a lot of it is about control and often menstrual cessation in order to make the menstruating person more convenient for a care giver. This sometimes goes so far as sterilization of the disabled person.

The dearth of material on disability and menstruation from the disabled perspective likely has a number of influences that include the fact that menstruation is still unfortunately a taboo subject generally that people are embarrassed to talk about. Add to that the very idea of disability and sexuality is also still (somehow) widely denied. Which is, I suspect why so many nondisabled people feel so comfortable talking about period cessation as a reasonable solution to disabled people who have periods.

This focus on just stopping the whole business of menstruation is frustrating because it primarily marks the disabled body and its natural functions as too inconvenient. It also means that for those of us who do menstruate that we are left with disability specific information on how to deal with our periods.

It is the latter issue that I’m going to deal with now because the first issue while so important is just to big for me to handle right now.

I am going to talk about disability and the accessibility of alternative menstrual products.

Unfortunately, I am just one person with just one kind of disabled body and so nothing I say will have universal application. This is one of the reasons why we really need more disabled people to share their stories and experiences. If you have a different experience please share it in the comments or write your own blog post about it and share that in the comments.

Hopefully in spite of this I will have something useful to say or spark a conversation to get more voices heard because I really feel that it is essential to demystify and destigmatize not only menstruation and particularly disabled people menstruating.

For context (to see if what I say will translate well for you) I have left side hemiplegic cerebral palsy and am autistic. So most of what I have experience with is dealing with menstruation literally single handedly and the sensory aspects it entails.

I started menstruating when I was 11 and have primarily used pads as my go to menstrual  product. I found tampons difficult and uncomfortable for pretty much my entire childhood and teen years. I only started using them rarely when I was well into my twenties.

I have never found pads to be particularly comfortable and couldn’t manage to deal with anything other than the thinnest option. I’m still not a fan of tampons. I find the uncomfortable but sheer pragmatism has forced me to use them occasionally. I am always hyper aware of them the entire time that I do.

In the last decade or so alternatives to the standard and and tampon methods of dealing with menstruation have become more mainstream (though they have definitely existed longer than that).

Alternative period products are generally washable and reusable and are considered to be both more environmentally friendly and more cost effective.

The oldest alternative period product is probably the menstrual cup

Menstrual cup comparison pic

Image description: a comparison of 12 kinds of menstrual cups including variations from the following brands; Juju cup, Diva Cup, Lunette cup, MCUK, Sckoon, Femmycycle, Lily cup (produced by Intimina), and Me Luna (pic credit from Vitals can be found here)

I was told by a menstrual cup user that I would be unable to use menstrual cups because insertion requires two hands (they were referring to the portion of insertion that requires the menstrual cup to be folded small enough for insertion into the vaginal canal). I believed them for years.

A menstrual cup usually costs around $40CDN and can be used for a year or more before requiring replacement (see specific brands for life span as they differ from product to product).

Yet a curiosity ultimately led me to buy a Diva cup last year anyway. I can report that they can in fact be used one handed. They can be folded by bracing the cup against something (like your leg or other arm) and then inserted as per the basic instructions.

I can also report that I find the menstrual cup to be far more comfortable than tampons. I can’t even feel it when it’s inserted. If I can feel it, it’s a good indication that I haven’t done it correctly and should reinsert.

Intimina, the company that manufactures the Lily cup and Lily cup compact recently put out this infographic about the benefits of menstrual cup use

How a Menstrual Cup can change your life

Unfortunately the graphic is so involved it defies an accurate image description. When I brought up this accessibility concern with the company via twitter, they created a more screen reader friendly version of the information which can be found here.

In addition to my Diva Cup, I also have a Lily Cup compact which folds up into a more convenient size to be carried in a pocket or purse (for when I don’t start my period in the comfort of my own home).

As you might have noticed there are a lot of different menstrual cups which might seem overwhelming but this selection is useful because it means that there are options not only in the sizes and lengths of cups available but also in the materials used (which is good to know for people with latex allergies). A more comprehensive guide to the options available a buying the right one for you can be found here.

The other product that I want to talk about is period panties. The kind that have absorbency built right in and are designed to replace pads or at the very least panty liners.

The brand that I have experience with is Thinx. The least accessible thing about these period panties is the cost which ranges from $24-$38USD (damn the abysmal exchange rate) per pair so they are a significant initial investment. I however, love them. They are significantly more comfortable than pads and easier to put on as there is no finicking with packaging or sticky tabs that are as likely to stick to itself as it is to your underwear. Thinx are underwear and are put on and removed like underwear. There are no extra pieces or steps.

The company is careful to not guarantee that you can replace pads with their product. I have however found them to be quite absorbent. I have slept in their boyshort which is advertised for light days on a medium flow day without leaks and woke up still feeling comfortable.

Thinx boyshort

Image description: a white woman stands in Thinx boyshorts underwear and a tank top.

I also appreciate that the boyshorts are gender neutral and Trans inclusive recognizing that it is not just women who have periods.

thinx boyshort gender neutral

Image description: a man stands in Thinx boyshorts in profile. He has a tattoo that says happiness on his side. both images taken from the Thinx website here.

The most onerous thing about period panties is rinsing them out before washing them which does require some hand control. I get around this by putting them on the floor of the shower and pressing the blood out with my feet as I wash my hair and then hanging them to dry until I do laundry.

I only use the boyshort and sport styles and like them both. I also have a couple pairs of the hiphugger style but I only used them once. I find the lace uncomfortable and it gave me a rash (so beware of this if you have sensitive skin). It’s unfortunate because the hiphugger style is the most absorbent. I wish they would make an equally absorbent model without the lace.

If you are interested in trying Thinx you can get $10 off by clicking this link.*

Padkix is another brand that makes period panties but I have not tried them.

Since I started using Thinx and menstrual cups, I have given up using pads and tampons entirely and my periods are more comfortable and less eventful as a result.

I usually start using Thinx a couple days before my period is supposed to start to avoid unexpected public leaks (which are a thing I no longer worry about). I then use Thinx in conjunction with a menstrual cup.

I know that menstrual cups will likely not be widely accessible but I wanted to include them to confirm that they can be used one handed. I think period panties have the potential to be potentially useful to more people if only they weren’t so initially cost prohibitive. Particularly for people who find that pads set off sensory overload.

I hope that people find this helpful. I would also like to ask again that people whose needs differ from mine please share their own experiences either in the comments or in their own blog posts.

 

*This is not a sponsored post. The discount code is available to share for anyone who has previously bought Thinx. I do however get an equal discount for everyone who takes advantage of it.