Sex when you have a disability

I was flicking through instagram earlier today and came across an amazing post by @wheely_good_time.  It was a group of spoonie sex tips (learn about the spoon theory if you don’t know what a spoonie is) and I loved them!  I instantly bounced them up into my stories and saved them.  They are practical tips and reminders with a nice dose of humour and I love that.

View this post on Instagram

A collection of spoonie sex tips that you all gave on the collab I made with @frankietastic ✌️&❤️ Eva xx ID: 10 images showing “Spoonie Sex Tips”: 1. Communication (talk before, during and after sex about what worked and what didn’t) 2. You don’t have to (we have to get over feeling guilty saying no when we’re unable to have sex because of our health) 3. Talk to someone (your physical therapist or a sex therapist) 4. Sex aids (vibrators, dildos, sex swings and flesh lights) 5. Provisions (have water and sweets on hand) 6. Positions (experiment to find what’s right for you, start by spooning) 7. Instead of sex (not just penetration – oral, masturbation, voyeurism, massage, porn, tantric, kissing, dirty talk, instructing) 8. Spoonie support (mobility aids and strategically placed pillows) 9. Dull the pain (physical pain – not emotional with ibuprofen, warm baths, also alcohol or weed – but set limits when sober) 10. Take it slow (it’s not a race) #WheelyGoodTime #StillDisabled #StillSick #Art #Quote #QOTD #Disability #DisabilityAwareness #Disabled #ChronicIllness #Spoonie #Disabilities #Accessibility #ChronicPain #DisabilityRights #SpoonieLife #DisabilityAdvocate #DisabledPeopleAreHot #TheBarriersWeFace #AbleismExists #DisaBodyPosi #BabeWithAMobilityAid

A post shared by Eva & Linka ♿️ STILL DISABLED (@wheely_good_time) on

I especially like tip 6 about positions which suggests starting with spooning!  And I think positioning is something that is really important with some disabilities or chronic health conditions.  Do you feel better when you’re sitting or laying?  Is your wheelchair the most comfortable place for you?  Incorporate that into your sex life!  Do you find having your legs elevated on a cushion helps you feel better?  Well that’s great because it can position you for better sex!  Use the motion of a wheelchair or the many positions of a riser recliner in your favour.  Research positions together and you’ll find out what you both like.

“Use a powerchair? Explore the tilt function to get your body in a comfortable position for self-exploration. Depending on your mobility, explore the sensation of shifting or rubbing your weight on the seat. Go for a jiggly, bumpy ride on a rough surface. Play around with the position of your belt and/or straps if you want to see what light bondage feels like.”
ACSEXE+

I’ve talked on my blog about communication before but I want to reiterate that I think a safe word is important. You need a way to distinguish between moans of pleasure and the screams of “shit my hip just dislocated”.

Sex isn’t a race.  Quick sex can be fun and has it’s place but we are so often shown this idea of destination sex.  Sex which is just about penetration and anything else that’s happening is just to get to that goal.  Sex without penetration can be more creative. It can take an afternoon and go in fits and starts as energy allows.  You can take a breather and just lay there together.  These things are ok and can create intimacy.

“In the movies, couples are always portrayed as being flawlessly sexy and romantic. In reality… people get cramps. They hit their head. Their stomachs make weird noises. They pull a muscle. And when you live with chronic pain, things are, truthfully, even more likely to go a bit awry. Don’t be afraid to laugh with your partner – it may even bring you closer together.”
– 
The Mighty

I’ve said before but think about timing.  I know that there is this idea out there of spontaneous sex that often happens after bedtime but in reality, we could be having better sex if we listened to our bodies.  When are you most awake?  When do you feel at your best?  If that’s sunday lunch time then make the most of it!  And if your bed is like mine and full of random stuff – positioning pillows, books, bears… – then move them before you get started.  That way you don’t have to stop midway to make things more comfortable.  It also means that if, like me you are fed overnight, you don’t have to add in navigating extra tubes.

Play to your individual strengths.  If one of you is physically stronger, make them do more of the physical work.  You can give back in other ways – dirty talk, creating fantasies, excellent playlists etc.

Anyway, this post was mostly to link to the cool instagram post and to revive the conversation around sex and disability.

And remember that sex releases wonderful hormones which can help with pain!

Related reading:

Advertisements

Disability and sexual health

Note, this is primarily going to be about the experience of cis women as I know more about this right now and I feel that trans disabled people are likely to have some extra barriers.  And obviously there are many different disabilities and this post is going to focus on physical disabilities.  It is also important to note that some people have had great experiences, but it is a postcode lottery.

You would think that medical buildings would be one of the most accessible places in the UK, but the reality is shocking.  Being in hospital with a physical disability was horrendous, but that’s for another post, this one is about sexual health services.

A recent report from Jo’s Cervical Cancer Trust found that:

  • 88% said it is harder for women with physical disabilities to attend or access cervical screening
  • 63% said that they have been unable to attend cervical screening because of their disability
  • 49% said that they have chosen not to attend cervical screening in the past for reasons such as previous bad experiences related to their disability or worries about how people might react.
  • 45% said that they felt their needs have been forgotten and 38% said that they feel the doctors or nurses don’t take their needs seriously

This is not ok.  Sexual health matters.  And it’s not just about cervical screening.  The issues at play with the smear test are also often found in STI testing.  All of this is putting women with disabilities in danger.

In terms of screening for breast cancer, the NHS website says:

“Mammography is a procedure that’s technically difficult. You have to be carefully positioned on the X-ray machine, and must be able to hold the position for several seconds.

This may not be possible for women with limited mobility in their upper bodies or who are unable to support their upper bodies unaided.

If you have a disability, your breast screening unit should be able to advise you if screening is technically possible, and on the most appropriate place to be screened. This will usually be at a static unit.

If a mammogram isn’t technically possible, you should still remain in the call and recall programme, as any increased mobility at a future date may make screening easier.

If a woman can’t be screened, she should be advised on breast awareness.”

And whilst I understand the physical limitations, it doesn’t feel like enough.  In the US, between 2001 and 2005, 75.4% of women without disabilities went for a mammogram, compared to 54.9% of those who have a disability.

Barriers to accessing sexual health services include, but are not limited to:

  • surgeries that are not wheelchair friendly – a shocking 63% of respondents to the Jo’s Trust survey said their GP was wheelchair accessible
  • a lack of hoists and adjustable beds
  • previous negative experiences – women with disabilities may have had more interaction with the medical community and bad experiences more generally can mean they are reluctant to go for screening.  It’s not uncommon for women to feel they aren’t listened to or taken seriously when they present with illness or disability and no one wants to subject themselves to more of that.
  • related to which is staff attitudes, and not seeing disabled women as sexual beings and hence seeing sexual health as a low priority.

“In some cases, women reported being told screening is too complex to arrange and have been told it is not possible or even asked to sign a waiver stating that they do not wish to receive screening.”
– Jo’s Trust

Attitudes and beliefs taint the way people are treated.  I’ve had GPs question why I wanted contraception and assume the only reason would be to stop my period.  This didn’t happen before I became disabled.  And if someone isn’t seen as sexual, then by extension they don’t need to access sexual health services.  This way of thinking can block innovative, or just common sense, ways of providing these services. 

These solutions might be home visits for people unable to leave their bed, buying a hoist for the GP practice or referring people to a hospital where there are appropriate facilities.  It could be having appointments which allow for women with disabilities needing longer or it could just be better training.  Sometimes it might be as basic as having an accessible GP practice which really shouldn’t be a big ask.  And sometimes it might be even simpler and be a case of including access information on the website.  I checked out the online information for my nearest sexual health clinic and there is no mention of access or blue badge parking and that in itself is a barrier than can be easily and cheaply overcome.

Other good practice ideas include having staff that are flexible, that can problem solve and who want to work with the patient to find out what works for them.  It’s possible extra reassurance may help, or a “we’ll try it and see what happens and go from there” attitude.  For some women, going in and seeing the space may help them to work out adaptations with the staff beforehand.  It might also help to have another professional on hand to help.

There are other sexual health barriers that disabled people face, for example, if someone has limited use of their hands, how can their check their breasts/testicles for lumps?  Which can make the NHS advice for women who can’t have mammograms that bit more difficult… and certainly adds to the following horrific statistic:

“Disabled women don’t have the same access to screening for breast and genealogical cancers as non-disabled women, and are up to three times as likely to die of breast cancer.”
Disability Horizons

Unfortunately, this tends to mean the onus is on the woman to keep pushing for screening and be their own advocate… And until things change, one of the most important things we can do is make people aware of the issues and keep talking about them.  Hence this blog post!

Let’s do it like they do on the Discovery Channel…

Whilst my last post focused on sex primarily in a reproductive context, animals have sex for many reasons, just like humans do.  However, “for decades, biologists, anthropologists and psychologists have suppressed inconvenient evidence of homosexual behaviour among the human and nonhuman animals they observed” (Julien Dugnoille).

I’m going to start by looking at same sex activity as it’s one clear thread of evidence that not all animal sex is for reproduction.

There are many more bisexual animals than we tend to think and note I’m saying bisexual because often the animals aren’t solely engaging in same sex activity (which I’m going to say because same sex sex is a mouthful!).  Often, they are also having sex with the opposite sex when the opportunities arise.  The BBC also discusses whether we can claim some animals are homosexual as opposed to bisexual.

Ultimately, these are human enforced labels and as Eric Anderson says:

“Animals don’t do sexual identity.  They just do sex.”

You’ve quite possibly heard about the ‘gay’ penguins in a zoo.  They coupled up and started building their nest and sitting on rocks.  When the zoo realised what was going on, they placed an egg from a female penguin who was struggling to care for it in the nest.  The male penguins successfully incubated and raised the chick.

Same sex dolphins can become partners for life engaging in sexual behaviour, for example males can have a temporary female relationship but will return to the initial male partner afterwards.  Further, two male couples can join up to become a foursome.  One theory is that it helps to have a companion when feeding and resting because they can look out for danger.

Some male greylag geese pair up and when it’s time to raise children, they find a female and raise them together as a trio.  Some don’t but research shows the advantage of a trio; there is better defence against predators, the female has a higher social rank and better chance of survival and the female has more time to devote to her chicks because two males are helping.  After the chicks are raised, the males stay together whilst the female leaves.

In a reverse make up, roughly 2% of oystercatcher breeding groups are made up of two females and one male.  Additionally, up to a quarter of black swan families include parents of the same sex (Scientific American) and in some bird species, males steal eggs from females and raise them in same-sex unions.

Whilst these examples might feel like the exception to the rule, observers have witnessed as many as 1500 species of wild and captive animals engaging in same sex activity.

“Homosexual behaviours is surprisingly common in their animal kingdom.  It may be adaptive- helping animals to get along, maintain fecundity and protect their young.”
– Emily Driscoll, ScientificAmerican.com

Moving on from same sex activity to other non reproductive sexual activity, we find types of fruit bats who engage in oral sex, both female on male and male on female.  There is also masturbation and attempts to mate with the dead…

But what is all this sexual activity about?  Obviously, some sex is about reproduction, but pleasure, bonding and keeping the peace are all reasons for engaging in sex.

Bonding can be important for group species and strong bonds can be very helpful when facing off rivals or seeking protection from other group members.  This bond is also important in maintaining a strong group dynamic and sexual activities can diffuse social tensions.  Another type of bond is that of a parenting couple who may engage in sexual activity to maintain their bond whilst raising their young.

It’s interesting to look at an example, the bonobo.  Bonobos use sex to greet each other, to resolve conflict and for pleasure.  They engage in mutual masturbation, oral sex and penis fencing and are in general a very peaceful species.  Perhaps humans would be more chilled out if we had more sex?

But lets take a second to focus back on masturbation.  As well as humans, many other primates engage in masturbation and this can range from simple stimulation with their hands through to using twigs and leaves and other inanimate objects.  Females have been observed inserting objects into their vaginas and one male orangutan created his own sex toy:

“In one display of sexual ingenuity, a male orangutan created his own ‘sex toy’ using a large leaf, through which he poked a hole with his finger.  He then proceeded to thrust his erect penis through the hole for additional stimulation.”
– Carin Bondar

Sexual activity may also help some animals to reiterate their social hierarchy and may allow individuals to climb the ranks.

In some cases, animals may engage in non reproductive sexual activities such as same sex sex in order to gain sexual experience.  It’s interesting to note that it seems that same sex activity appears to be more common in captivity (although that could just be because its easier to observe), possibly because of a lack of alternative options and greater need for stress release.  In a similar way, you tend to find higher than ‘natural’ rates of same sex activity in prisons.

Time for another example!  Most penguins are not monogamous but it is by turning to Adelie penguins that we really get our eyes opened.  A scientific paper from 1915 had been hidden away for years, labelled not for publication and when it was rediscovered in 2009, it became clear why scientists of the time were reluctant to publicise the observations.

“They were ‘gangs of hooligan cocks’ whose ‘passions seem to have passed beyond their control’ and whose ‘constant acts of depravity’ run the gamut of masturbation, recreational sex and homosexual behaviour to gang rape, necrophilia and paedophilia.  Chicks were ‘sexually misused by these hooligans’, including one who ‘misused it before the very eyes of its parent’.  Strayed chicks were crushed and ‘very often suffer indignity and death at the hands of these hooligan cocks’.”
– Lucy Cooke quoting Dr George Murray Levick

Whilst this all sounds incredibly shocking, there is an explanation.  Adelies get together in October, flooded with hormones and only a few weeks to mate.  Young males are inexperienced and don’t really know what to do or how to act and this can lead to some questionable activity…  In their hormonal eyes, a frozen penguin in the right position can look a lot like an interested female… Apparently necrophilia isn’t just restricted to penguins…  Lucy Cooke references pigeons mounting dead house martins, male house sparrows attempting to mate with dead females and the same going on with a couple of pheasants…

In addition to all of this wonderfully interesting and fun goings on, we have those animals which change sex.

Suggested reading:

Women who love men who kill

I’ve been reading a lot about crime and murder recently and one of the reoccurring themes has been how men who have carried out horrific crimes don’t have a problem finding women.  In fact, women seem to throw themselves at these, often self professed, killers.  This was the case even when the men had killed their wife and children, and when they were on death row awaiting execution.

Given that this seemed to be an actual phenomenon, I wanted to know more.  What takes ordinary, every day women and makes them a) reach out to these men and b) then fall in love with them?

An important point to make here is that I’m talking about women who didn’t know the men before they were found guilty of their crimes.  For example, in the UK in 2001, Charles Bronson who has the title of “Britain’s most notorious prisoner”, married a woman who would later go on to lose her job because of the marriage.  They would go on to get divorced but by 2017 he was in another relationship and had married again. In the US, a journalist doing a story on the death penalty, met and fell in love with Billy Sinclair whose crimes included murder and rape.  The woman, who was married at the time, lost her husband and her children because of her relationship with the prisoner.

These are not isolated incidents, they seem to be commonplace for notorious male criminals.  A 2003 Guardian article says that more than 100 British women are engaged or married to men on death row in the US.  And that’s just British women and men in the US on death row.

So what is it that drives these women?

Well, obviously the answer is complicated, as it is whenever we’re dealing with human behaviour.  But predictably, there are some trends although there also seems to be a lack of research into the area.

Sheila Isenberg, in a 1991 profile of women who love men who kill, found that they tended to be “little girls lost, reared in dysfunctional families where they were victims of abuse at the hands of harsh dictatorial fathers aided by passive mothers.”  Whilst I don’t want to rule this profile out completely, it feels like a fraudian hypothesis and I don’t feel it explains many of the women in question.

Looking at how women meet men in prison may give us some insight into why they fall for them.  Anecdotally, there seem to be a few patterns. There are the women who see a man in the media and something captivates them, compelling them to make contact with that particular criminal.  There are women who write to criminals through official programmes and go on to fall for them.  And there are women who come into face to face contact such as through volunteering or working at the prison.  Knowing this alone, I feel we can rule out Isenberg’s profile as universally applicable.

Intuitively, it feels like the women who write to criminals through official programmes or who volunteer in prisons have a different motivation or reason for falling in love, coming into proximity for charitable or humanitarian reasons.  Women who contact a specific criminal after media presence would be more focused on establishing a relationship with that particular person.  The other women, perhaps, just happening to get feelings for a person they were getting to know.

Marrying or being in a relationship with a prisoner comes with a high price tag.  We’ve already seen women losing their job and their family but there is also a loss of respect in the community, loss of friends and wider family, isolation, damaged reputation and the years of pain you spend apart from the person you love.  This is alongside the advocacy and fundraising role that many of these women take on as they champion their partner’s innocence and manage their legal case, all of which takes time and money and emotional toll.

Given this, the pull towards the men must be immensely powerful.  Why else would you give up so much to be in a relationship with someone you can never spend time with?

Well, that may be the draw for some women.  There is an element of safety when you are in love with someone behind bars.  They can never hurt you, at least physically or sexually.  It also allows the honeymoon period to last forever, allowing women to stay in love with a fantasy and not having to risk the mundane day to day of life bursting that bubble.  This idea of having the perfect boyfriend may appeal to women who’ve been hurt in the past by partners or who have a history of abuse.

Perhaps the phenomena of women who love men who kill could be put down, in some cases, to extreme fanaticism.  Indeed, the more infamous the killer, the more interest the killer has from women.

Some women feel powerful because of their role in their partners life.  To a certain extent the prisoner is dependant on the woman and feeling in control of a powerful man can bring a thrill.

Another thrill may come from the attention and fame that arises as a result of being married or in a relationship with someone notorious.  It may also fulfil a need in the woman for danger and drama.  There is a soap opera element to these relationships – the unfulfilled love, the longing and yearning that comes with such situations and of course the controversial and taboo aspect of it.  There’s also the ever present questions of will I get into the prison to see him, when will I see him, will he get parole, what’s happening to him, when will he get an execution date… All of which creates drama and cliffhangers.

In some cases there seems to be a sense of the two of you vs the world which creates a powerful bond and perhaps this is what attracts women to the outlaws.  Another, more sinister theory is that the women themselves would want to carry out murder but for whatever reason can’t and they live out their killing fantasies through their partner.

“Women may be sublimating their murderous eroticism by making connections with men who have committed murder.”
– Peter Morrall, Murder and Society

A seemingly common explanation is the idea that the woman can change the man.  That they see something special in them that no one else does and if they just nurtured and cared for the criminal they would be a changed man.  This delusion of being a saviour may apply more commonly to the women who have written to or volunteered with criminals as a way of converting people to their religion.  In the case of Ted Bundy, women writing to him tend to be lonely, religious and looking to get him on the right path.

We must remember that a number of these men will be psychopaths and psychopaths can be charming.  They can make you feel special, they can make you feel like they’ve chosen you and they can manipulate your behaviour, such as by sharing things with you that they haven’t shared with anyone else.  Inside prison, there is reduced opportunities to play with people’s lives and this may be one way they can do so.  One case I read about involved the man getting a woman to fall for him and then when he was bored or had had enough, he’d end things abruptly, with no regard for her.

“Women who get emotionally involved with prisoners almost always end up rejecting the idea that this man could have committed the crimes for which he was convicted.”
Independant, 2005

If they don’t reject the idea, then they are able to make excuses for the crimes, or rewrite history to reduce the man’s role or involvement or motives.  This is evidenced by the time and money and effort that women put into championing their loved one and the level of obsession that some women get to when trying to prove their innocence or improve their living conditions.

For some women, there may be an attraction to the display of manliness expressed in their crimes.  Taken to the far end of this is hybristophilia where sexual arousal is responsive to and contingent upon being with a partner who is known to have committed something wrong, whether it’s as ‘mild’ as lying or cheating or as ‘strong’ as murder.  One person in a 2016 article said that the details of the crime are a turn on, with another quoted as saying the criminals “give in to the animal, uninhibited selves, and I love the rawness of that.”  Whilst this probably accounts for some of the women who love men who kill, hybristophilia is thought to be quite uncommon and is defined by arousal so won’t apply to all.

Despite these hypothesises, this seems to be an under-researched area, lacking in statistics and quantifiable evidence, instead conclusions appear to have been drawn from qualitative sources.  Perhaps this is because of greater priorities, perhaps it is because whilst the number of women is shockingly high, the harm caused is comparatively minimal.  Or, perhaps it is because research is still a patriarchal arena.  Regardless, I have found it a fascinating look into the human psyche and what drives us to do the things we do.

Let’s talk about sex…

Earlier this year, there was an issue of Oh Comely which had a call out for personal stories about sex and it got me thinking.  Whilst I have long championed the need for comprehensive sex and relationship education in schools and youth clubs and seen the value of it first hand, and whilst I have post after post on my blog about sex, I haven’t had a particularly great sex life.  And to say that feels like I am invalidating myself when I’ve previously stressed the need to speak about sex.

To say that you haven’t had a particularly great sex life feels like you are openly telling the world you are a failure.  And I have felt like a failure because of my sexual experiences.  I want to make it clear here that this isn’t an attack on my partners.  That said, the first (consensual) fumble I had was pretty horrific and came an hour or so after my first, also not great, kiss.  The latter was a little like an octopus had attached itself to my face, the former was in the dark in an empty outdoors shopping centre.  Cold hands forced themselves under my clothes, my breasts were grabbed like they were pieces of meat and then a security guard turned up.  I stayed with that partner for far too long.  But aside from more fumbling and a pretty horrific experience where I blacked out during oral sex, we never went “all the way”.

Enter partner two.  A much better person, much better kisser and someone I still love, platonically, today.  Partner two showed me just how bad partner one had been… Although partner one did, over time, become better at kissing.  I hope their spouse is grateful to me.  And yes, facebook stalking does reveal they are married.

Partner two was the first person I really wanted to have sex with.  And things were great.  Right up until penetration.  It just would not work.  And as sex is such a natural behaviour, and as no one ever tells you about the problems (aside from erectile dysfunction), I thought I was broken.  I felt great shame and I felt like I was letting my partner down.  I felt like I wasn’t a “proper” woman.  I was a failure.  Guilt ate away at me – I wasn’t giving my partner the full sexual experience, it wasn’t fair on him – and I was so ashamed of myself and my inability to do this one, supposedly easy, thing.  I mean teenagers can do it so why, at 21, couldn’t I?

At the same time as I was failing at sex, I was telling people about how important high-quality sex and relationship education is.  I was advocating for pleasure focused information.  I was championing the need for women to stand up for themselves and get what they need out of sex.  And here I was, a failure.

At one point during my relationship with partner two, I was volunteering at a youth club.  We had a night where we got out the demonstrators and condoms and other forms of contraception and we sat down with a small group of young people and talked sex.  We were really open, we answered their silly questions whilst they relieved themselves of some of their nervous energy.  And in answering the questions honestly and openly, they started to ask some of the more pertinent questions.  The group included some lovely girls who were reasonably informed but also some lads who had probably been kicked out of their school sex ed class for being rowdy.  They were also the same guys who regularly boasted about buying condoms.  Yet when the demonstrators came out, they put the condoms on inside out.  They didn’t realise there was a right and wrong way.  And so we sat there, casually explaining why you needed to put it on the right way and why you pinch the end.  It was a low pressure, really open discussion and I really think that everyone of those young people took something valuable away, whether it was knowledge or the notion that it is ok to ask questions and to talk about sex.

And then, I went home to the partner I could not sexually fulfil.

By this time, I had seen a doctor who gave me a word – vaginismus – which made me feel a tiny bit less like a freak.  She had advised using vibrators, starting small, and working my way up.  This is sound advice and it chimes with everything the internet had to offer back then, which was incredibly limited, but we didn’t really get anywhere.  Later I would learn that my genetic condition – Ehlers Danlos Syndrome – was likely contributing to my troubles.  Essentially some of my muscles work overtime and some don’t do very much, the muscles around my vagina are some of those which work overtime.  Every time anything comes near it, they clamp down.  Tampons, smear tests, coil insertion, they are all out of the question.  For a long time, I thought there must be something physically wrong with me down there.  Alongside this I was anxious that I might have been sexually abused and blacked out the experience*.

I was too embarrassed to talk about this with my friends and when sex was discussed I sort of nodded along as if I could relate.  Penetrative sex is a normal, natural process, without with humans would have died out millennia ago.  For thousands and thousands of years, women have been able to do this one thing that I could not.

Things are different today.  Today I am more confident about speaking up, I am more confident and I live by the words I’ve preached for the last couple of decades – sex is not defined by penetration.  We live in a world where penis in vagina sex is privileged above all other kinds, a world where penetration is seen as the end goal, a world where other sexual activities are labelled foreplay.  Today I am much more confident about shouting this from the rooftops.  I am much more confident that my assertion that there is no right way to have consensual sex is correct.  I am much more confident that my version of sex can be just as pleasurable.

Today there is more information out there.  Vaginismus even has a page on the NHS website which it didn’t when I was trying to figure things out ten years ago.  In some ways things have changed a lot, there is more information out there, but in other ways, things haven’t changed at all.  We still assume that sex is about penetration and we still don’t discuss sexual issues beyond erectile dysfunction.  Our view of sex is still filtered through a patriarchal, heterosexual lens.  I hope by sharing my story, by speaking up, that I can help someone else who is going through a similar experience.

I haven’t had a particularly great sex life but I am incredibly proud of the journey of self discovery that I have been on.  I have grown so much and I have a much more secure sense of self worth these days.

I haven’t had a particularly great sex life but everything I have to say about sex still stands up to scrutiny.


*I was abused, as far as I know I didn’t black out and as far as I know I wasn’t penetrated.  It took me years to accept that what had happened was abuse.  But that is a story for another day.

Sex, the charmed circle and disability

Note: This is almost 4000 words long… just thought you should have a heads up!  I was going to split it but it didn’t feel right…

What is the charmed circle?

In 1984, Gayle Rubin argued that we should view sex as a vector of oppression – we shun what we don’t understand and human sexuality is so varied that we inevitably don’t understand all of it so we do consider some acts as lesser or as abnormal. As such, we then end up oppressing people who carry out those acts and society creates a hierarchy of sex.

“Like gender, sexuality is political. It is organized into systems of power, which reward and encourage some individuals and activities, while punishing and suppressing others.”
– Rubin

A significant consequence of a hierarchy of sex is the creation of moral panic.  Historically we have seen panic and moral outrage in response to different sexual behaviour, eg sex outside of marriage, same sex sex, prostitution and obscene material.  The theme they share is always that they are outside the privileged, or charmed, circle of behaviour.  One reason these panics create such out roar is because the behaviour and activity is seen, ultimately, as a threat to civilisation.  If ‘bad’ types of sex are allowed to become mainstream then even ‘worse’ behaviours will follow. We see this when fear of children being molested is brought up in arguments about allowing same sex marriage.

Time and place are important when looking at what is and isn’t acceptable.  Sexual behaviours have changed rapidly in the last century and this speed has created confusion about what is ‘normal’ when it comes to sex.

“Regarding sexual normalcy from a social perspective, the individual accepts societal norms for choice of sexual object and activities.  Within a given society, sexual norms may differ according to a subgroup’s religion, education, political beliefs, or socioeconomic status.”
– Leslie R Schover and Soren Buus Jensen

To try and illustrate the concept that certain sexual behaviours are considered privileged over others, Rubin developed the charmed circle.  Sexual activities which are judged by society as being good or natural are set up within a binary where the flip side is then unnatural and bad.  The inner circle is where good sex takes place and the outer therefore is where deviant sex is place.  This diagram shows how different values are used to judge the acceptability of different types of sexual behaviours and demarcates the line between normal and abnormal.

In setting up a binary of good and bad behaviour the charmed circle, by extension, creates good and bad people.  In reality of course, we are all complex layers of differing, and sometimes competing, identities and this matrix of interaction can balance out certain sexual behaviours or come together to emphasis the prejudice that is cast on a person’s sexual identity.  It is important to note that making the ‘right’ decisions about sexual behaviour can result in our belonging to, or not, a particular group, to having citizen ship of a particular society.

As a disabled person who is interested in disability and sexuality, I shall be viewing the charmed circle through a disability lens.  Having said that, I don’t feel I can truly step away from my other identities and hence this will not be an unbiased look at the charmed circle.  In addition to being disabled, I feel it is important to note here that I am also bisexual, feminist, single and cannot have penetrative sex. These are all parts of my identity and as such they will affect how I view the charmed circle.

What is sex?

As I mentioned above, I cannot have penetrative sex.  This obviously skews my concept of what is and isn’t sex, but despite this, for so long I had internalised the dominant discourse that penis in vagina sex is the only legitimate type of sex, or certainly that it is top of the hierarchy.  It works well in our culture of black and white thinking as it is a clear cut act.  We set people up as virgins or sexual and whilst we don’t value these labels as strongly as Victorian society did, we do still feel the need to have a specific, defining moment where you move from one to the other.  This is why penis in vagina sex is so useful in defining sex – it is a very precise moment when you transition from virgin to not and I think we still find ourselves with internalised ideas about what this means as part of maturing.

However, penis in vagina sex is not available to us all.  Not everyone is attracted to someone with different genitalia, not everyone has a functioning penis or vagina and even if you do, it doesn’t mean that penis in vagina sex is what you enjoy.  This also sets up a goal orientated vision of sex instead of one that focuses on pleasure throughout.  How many times do we see male orgasm portrayed in the media as the aim of sex?  What about female orgasm?  And what about non penetrative acts that are not purely for foreplay?  I have problems with that word – foreplay – because it implicitly sets up the idea of a destination and privileges the goal over the journey.  I haven’t read magazines which talk about sex for a while now because they frustrate me but they did, and I assume still do, portray foreplay as incidental.  As a detour to get to the (male) orgasm.

Margrit Shildrick discusses these ideas and how historical and religious ideas still shape our understanding and definition of sex today.

But for my purposes here, I’m going with the idea of self definition.  Sex is what the person or people engaging in it consider it to be.

How do disability and sex interact?

Note, different people experience disability very differently and will also experience being disabled and sexual in vary different ways.  This makes it very hard to discuss this area comprehensively and yet concisely, as such, please note that some ideas will not apply to some disabled people and there will be other aspects that I haven’t been able to cover.

Earlier I mentioned that sexual activity can be related to someone’s ability to be a citizen of a society and Cashelle Dunn argues that disabled women are denied full citizenship simply by virtue of being a disabled woman.

When it comes to disability, people are reduced to things, objects to be pitied, to be looked after.  There is a prevailing view that the disabled person is childlike, especially if they are perceived as being dependant, and this is a barrier to seeing disabled people as sexual.  Society wants to prevent disabled people from having sex in the same way they do children.

Two thirds (67%) of the British public feel uncomfortable talking to disabled people.

Over three quarters (76%) think of disabled people as needing to be cared for, and 13% think of disabled people as getting in the way some or most of the time

Just a third (33%) of British people said that they would feel comfortable talking to disabled people, with many worried that they will seem patronising or say the wrong thing

– 2014 report from Scope

44% of people in a Guardian poll said they had never had sex with someone with a physical disability and probably wouldn’t.

These are not sexy ways to view people.  And thus, these attitudes taint society’s view of disabled people having sex.  If 67% of people are uncomfortable talking to me, how are they going to feel about having sex with me or even thinking of me as a sexual being?

Disability, sex and the charmed circle

“I am aware that, for many, sex and disability at times seem not so much intersectional as incongruous: “What exactly do you do?” is about as frequent a question for disabled people, in relation to sex, as it historically has been for many queers. The motivation behind the question, however, has usually been different. Although stereotypes of the oversexed disabled person engaged in unspeakable acts do exist, disabled people are more commonly positioned as asexual— incapable of or uninterested in sex.”
– Robert McRuer

Whilst disability is not one of the segments in Rubin’s charmed circle, I would argue that it is implicit in many people’s view of acceptable and unacceptable sexual behaviour.  However, because the majority of the population assume disabled people to be asexual, it has possibly not crossed many minds to even include it in the circle.  I am positing that for many people, disabled people are outside the circle entirely.

“There is an unspoken taboo about relationships and disabled people.  Disabled people’s sexual and emotional needs are rarely included in any discussion or representation in everyday life.  This reinforces the public’s attitudes and expectations towards disabled people as seeing them as ‘sick and sexless’ rather than participating in full sexual and family relationships.  It is perhaps one of the most pernicious ways in which society has blanked out disabled people from a fundamental area of social life.”
– Lamb and Layzell, 1994

Echoing Rubin’s discussion, Shildrick notes that there is a “cultural imaginary that fears nonnormative sexuality as being a potential point of societal breakdown.”

 “Where disabled people are seen as sexual, this is in terms of deviant sexuality, for example, inappropriate sexual display or masturbation.  Derogatory stereotypes, concerning for example blindness, are typical of this tendency.”
– Tom Shakespeare

I, obviously, advocate for the inclusion of disability within the circle and whilst I do not believe in a hierarchy of disability or that certain types of disability are acceptable when it comes to sex, I do know that some people, consciously or unconsciously, feel this way.  What I mean by this is that, for example, people with invisible disabilities are considered to be potential sexual partners and that it is acceptable in the minds of others for that person to be engaging in sex, with the confines of the other aspects of the charmed circle.  On the other hand, a person with no bodily control is seen by the majority as not just not acceptable sexual participants, but as not even in the game.  Some of these distinctions become clearer when we consider the other binaries that are featured in Rubin’s charmed circle.

Note: just as I was posting this, I stumbled across a paper which has used the charmed circle model to illustrate a hierarchy of ability.  I haven’t read it yet but about 2/3rds the way you can find an image of this.  It doesn’t fully illustrate the point I make in the previous paragraph but it does show that the more disabilities you have, the more unacceptable you are seen as being.

Additionally, if we accept, as we should, that disabled people are sexual beings, we must then decide where they fit in terms of the charmed circle.  In Rubin’s model, it seems we would tend towards the outer limits simply because of how sex plays out given our particular disability.

Marriage

According to a variety of different reports from the last 50 odd years, disabled women are less likely to be married than non-disabled women.  Interestingly this divide is smaller when it comes to men.  From the point of view of having charmed sex, this means disabled women would have to wait longer, or forever, to have sex.  There is also evidence that in heterosexual relationships, disabled men are more likely to maintain their relationships whereas disabled women tend to find their partner leaves them.

Returning again to the 44% of people who haven’t had sex with someone with a physical disability and probably wouldn’t, we are left with just over half the population to consider relationships with, and if you are heterosexual that figure roughly halves, if you are of a sexual minority then you’re really limited, especially given some of those people will already be in relationships.  And if you manage to find that needle in a haystack, not only do you have to date them, you have to both want to marry each other as well before the sex is considered acceptable.

Couples only

For Rubin, this excludes masturbation.  As we saw with marriage, this could leave disabled women in particular unable to have any form of acceptable sexual experience.  There is also the consideration of facilitated sex:

“Where sociocultural mores and the law broadly support a normative image of sexuality as heterosexual, private, ideally reproductive, and above all autonomous, facilitated sex—which by definition cannot be wholly private or self-directed—all too clearly draws attention to the difference of anomalous bodies. If the public discussion of sex and, more particularly, sexual variation is still a strong taboo in many Western societies, then the very notion of such hands-on involvement is even more disturbing.”
– Shildrick

This also brings up some legal aspects which Shildrick expands on:

“Although consensual acts of homosexuality are no longer always a crime in many Western jurisdictions, a homosexual act remains illegal under the Sexual Offences (Amendment). Act 2000 in the United Kingdom, for example, if it takes place in a situation deemed to be not private. Given that the presence of any third person or persons is understood to break that privacy condition, then clearly gay disabled sex is, strictly speaking, illegal if it is facilitated by a personal assistant whose physical presence is required.”

Procreative

This assumes that all people are fertile, would make good parents and want children.  I want to be clear here that disabled people can be parents and can make amazing parents, that is a stigma which would be an entire discussion on its own.  But not everyone can be.  I can’t dress myself, let alone a baby and I certainly couldn’t life one or safely hold it.  I also don’t want to pass on my genetic condition.  These are choices I have made due to living with my particular disability.

I would also argue that many people assume that disabled people are not having procreative sex but I have lost the research I read about perceptions around disability and parenting…

To privilege procreative sex also turns sex into a goal orientated activity.  One which is phallocentric and by necessity requires male orgasm and penis in vagina sex.  Extending this idea of goal orientated sex, one which is prevalent in our society where the goals is penetration or (normally male) orgasm, the idea of sex as a destination is one that troubles me and seems to take away pleasure.  Penetration as goal rules out anyone who can’t penetrate or be penetrated and there are so many reasons why disabled and non disabled people could find themselves in that situation, whether as a one off or ongoing.  It also dismisses other pleasurable parts of sex and also, a lot of penis in vagina positions are physically demanding in a way that other activities might not be.

Bodies only

Sex toys and things like sex swings and positioning aids are all ways in which disabled, and non disabled, people can have a satisfying sex life and the stigma around them has lessened since Rubin’s writing in 1984.  But there is still some stigma and reluctance to discuss sex toys which impacts on those of us more reliant on them.  If you have hands which don’t function well or you can’t get an erection or need help positioning yourself then sex toys can come to your rescue.  Whilst non disabled people use sex toys, for some disabled people they can be the difference between sex and no sex but again place the disabled person in the realm of unacceptable sex, at least in the 80s.

In private

This requires that you do not live in a group home or sheltered housing or anywhere were you have limited privacy.  Deinstitutionalisation has made it more likely that a disabled person has a home space but having carers and other types of support can limit your privacy, even within your own home.  It also pulls in ideas we saw when we looked at couples only.

Disabled people often feel an additional pressure to play out all intimacy within a private sphere. I have heard time after time stories of disabled people being out in public with their partner and being assumed that they are actually a paid for carer.  Further, if the couple hold hands or kiss, the common narrative either feels pity for the non disabled partner, congratulates them for being an amazing person or pressurises the disabled partner to feel grateful that they are loved.

“Whilst law may allow women with disability to participate in sexual activity, society tolerates it only if it remains in the private sphere.”
– Dunn

Free

This is a more controversial area and not one I want to go into right now but some people who have disabilities have argued for the right to use sex workers to meet their needs.  When society is set up in such a way that disabled people are not seen as sexual it can be difficult to find someone who wants to have sex for free.

Disability Now conducted a survey in 2005 which revealed that 22 per cent of disabled male respondents (compared to an estimated 10 per cent if you look at the whole male population) reported having paid for sexual services compared to just 1 per cent of disabled women. Similarly, just 16 per cent of disabled women had considered paying for sex compared to nearly 38 per cent of disabled men.

Alternative charmed circles

If we accept the idea that some types of sex are privileged over others then the charmed circle could be considered as a model for this, although I do find the use of binaries objectionable.  One could consider instead an array of spectrums, for example marriage being highly privileged by our society, couples who live together coming next followed by long term relationships followed by short term relationships and sex with strangers featured at the other end of the spectrum.

If society is set up so that one of the binaries in the charmed circle is able bodied and disabled, then I would argue that in reality there is again a spectrum.  Someone who has an invisible disability is privileged over someone who has a visible disability.  And someone who can still partake in ‘traditional’ sex would be privileged over someone who, for example, has very limited bodily control.

NB, I am not advocating for a spectrum here, I am noting that in my experience and hearing from others, that this spectrum exists and to ignore it would be to great too large a generalisation about what it means to be disabled and sexually active.

An interesting alternative I found was from Meg-John Barker who flipped the circle so that narrower ideas about acceptable sex where on the outer circle.  This is reached by reasoning that people who have less mainstream sexual identities and behaviours often have more fluid and more diverse ideas around sex.

From an anecdotal and common sense perspective I would argue that the same is true for many people with disabilities.  The nature of having sex with a disability often means increased communication is necessary.  There are also, by virtues of different bodies, a greater number of ideas about what sex is and what sex can be and similarly the use of sex toys and accessories may play a bigger role in sexual activity.

“Some women feel liberated from social expectation as a result of impairment, some men feel doubly inferior.”
– Tom Shakespeare

Having a disability can take you outside of certain societal pressures.  If you are treated as though you are invisible and cannot be beautiful because of your disability, it makes it easier to shun society’s expectations when it comes to appearance.  Being seen through a genderless role, reduces the pressure to perform to your gender.  Of course, these ideas aren’t going to be true for every disabled person and some people may feel even greater pressure to conform to society’s expectations.  If you do defy convention then this may extend to your sex life.  Personally, not being able to have penetrative sex has created space for pleasure-centric not goal-centric sex.

Non acceptable approaches to sex and disability

Flowing through all of the above is the idea that sex and disability should be viewed as acceptable, as good and not stigmatised.  Having set that up, I do want to highlight areas where behaviours are unacceptable as I think this is one of the flaws of Rubin’s model.  She has set up a value based model around how we view sexual behaviours and yet has failed to include consent, rape and objectification which are surely crucial elements of any acceptable/non acceptable model.

Abuse

Disabled people are significantly more vulnerable to abuse, including sexual abuse.  For some people there is something inherent in their disability which makes them vulnerable – a lack of understanding about what’s happening, a physical inability to defend oneself – and having carers and other professionals in your home does create increased possibility for abuse.  In fact a 2014 study found that more than 40% of women with disabilities had been victims of violent sexual encounters.

The 1995 British Crime Survey found that disabled women were twice as likely to experience domestic violence as non-disabled women.  In 2008, Women’s Aid confirmed this was still the case and additionally:

  • “Women with learning difficulties are even more likely to be at risk and the level of violence that they experience is also likely to be higher.  The more dependent they are and the more complex their needs, the more likely it is that they will be at risk, as are women with mental health problems.”
  • “More than 70% of women with learning difficulties are sexually assaulted, a rate that is twice as high as for those in the general population.”

(quotes from Scapegoat by Katharine Quarmby)

Devotees

I’ve written before about disability devotees, that is people who are attracted to the disability or related equipment but just to touch on the subject, Tom Shakespeare sums up the issue quite well:

“Some non-disabled people are seeking disabled partners for reasons we can only be described as exploitative… Disabled people very commonly find themselves the focus of sexual interest from people who find their particular impairment titillating… the person is being treated as an object, and this implies that the relationship is unequal and potentially oppressive: they become a means to the sexual gratification of others, rather than an equal partner and someone whose own pleasure is valued.”
– Tom Shakespeare

Reading

Disability and abortion

Have I already written about this? I know I touched on it in the post around sterilisation…  Hmm… maybe I haven’t… I think maybe I was avoiding it because it is such a huge and complex area…

Firstly, I am pro choice.  I believe that women have the right to chose what happens to their body.  For me, this is not a case of not valuing a fetus, it is a case of valuing the woman’s life more.  I do not believe making abortion difficult will stop abortion.  Making abortion illegal will just make abortion more dangerous.  It will not stop abortion.

Secondly, language around this issue is full of emotion and controversy and I have done the best I can.

Thirdly, this is not a discussion about the morals and ethics surrounding abortion itself.  It is about abortion and disabled or potentially disabled fetuses.  I am making an assumption, for this post, that the society in which this debate is taking place allows women access to abortion.

Ok, now we’ve clarified that, what does abortion have to do with disability?

Here I am considering the right to abort a fetus which has a disability.  The argument against screening for disability and then acting on the information is that it is a form of eugenics. As we’ve already seen on this blog, the eugenics movement in the early 1900s had a profound effect on disabled people and their rights and their lives.  Here we are not sterilising or killing people who have a disability but instead are stepping in earlier and preventing a potential disabled person from being born.  Society is allowing the reproduction of people with “undesirable attributes” to be stopped.  This underlines the idea that all disability is bad and that everyone is better off not being disabled.

Adrienne Asch is one writer who finds abortion for “fetal indications” profoundly troubling. This is not because she regards fetuses as persons and abortion as seriously morally wrong. Her view is that abortion is morally acceptable if the woman does not want to become a mother. However, she distinguishes between abortion to prevent having a child (any child) and abortion to prevent having
this child. Why, Asch asks, would someone who wants to be a mother reject this pregnancy and this (future) child because of one thing about that child: that is, that he or she will have, or is likely to have, a disability? She believes that such rejection is likely to stem from inaccurate and prejudiced ideas about what it is like to have a disability or to parent a child with a disability.

Bonnie Steinbock

It is important to know a bit about prenatal screening and the information available to parents who are going through this process.  There are two parts to prenatal diagnosis; the first is screening which gives parents and idea of how likely it is their child would have a particular health problem, the second is then a definitive test.  The first is non invasive, consisting of scans and/or blood tests and looks for things like infectious diseases, Down’s syndrome, or physical abnormalities.  The second is invasive and carries certain risks but gives a more certain yes or no about whether the fetus has a particular condition.

One really important thing to keep in mind here is that these prenatal tests do not tell a parent that their child will be born healthy or without disability.  There are many many many conditions or illnesses which cannot be screened for.  This then creates a potential for people with certain disabilities being considered less worthy of life.  There is a question of who decides what disabilities are screened for and what are the consequences of that (obviously science and technology plays a part but this is still all guided by people).  For example if most fetuses with Downs Syndrome are aborted, we end up in a situation where there are fewer people with Downs and those that are alive may feel they are being told by society that they shouldn’t be.

Another consideration is the severity of a disability, just because someone tests positive for a condition does not mean they will be disabled by it.  Take my condition, you can be severely disabled by it or you can go through life without too much impact.  This approach is saying that anyone with x is inevitably going to have a difficult life rather than considering the severity of the condition and the society around that potential person.  A millionaire with x will have a very different experience than someone who is unemployed – money buys support and equipment and such things.

The language used in the debate also assumes both that all disabilities are equal and the same and that there is no good life available for a person with a disability:

Disability in the context of a termination decision for a wanted pregnancy has been described as a “tragedy” and a “defect”— using the language of pain, suffering, and devastation. The focus is on the potential suffering a child with a disability will allegedly experience and inevitably bring on parents and other siblings. The fetus with a disability that is survivable post- partum is often considered damaged.

The paradox of disability in abortion debates: bringing the pro-choice and disability rights communities together

A key argument against abortion of disabled fetuses is that if society changed, there wouldn’t be a problem for that disabled person.  As such, abortion is removing the need for society to change how it sees and supports people with disabilities.

But, what if the parents are in a situation themselves where they cannot cope with the additional things that come with having a disabled child.  Is it then fair to insist they have that child and suffer the detrimental impact on their lives as well as the child’s?  Here I’m thinking about additional financial burdens, especially in cultures where health costs are extortionate and parental leave non-existent.  Whilst it is nice to consider what would be ethical in an ideal world, we do not live in an ideal world.

For Lippman, the rhetoric of choice is meaningless; to knowingly carry to term a baby with Down syndrome “cannot be a real option when society does not truly accept children with disabilities or provide assistance for their nurturance”

Keeping the backdoor to eugenics ajar

A further consideration is those parents who know there is a chance of an inherited condition who want to get prenatal screening not so that they can have an abortion, but so that they can mentally and physically prepare.  Prenatal testing and finding out the child may have a disability does not mean that parents will inevitably chose to terminate the pregnancy.

Whilst it’s easy to talk in examples, it is unfair in some ways.  We all find ourselves in situations where there is no good answer and stigmatising parents who have made incredibly tough decisions, whatever they decide, is not helpful to this debate.

“All decisions about screening and termination are difficult and can only be made by those people who have to live with the consequences”

-Tom Shakespeare

Shakespeare distinguishes between population level eugenics (such as that during world war 2 and forced sterilisation) and individual level eugenics (those decisions made by individuals and families).  I find this an incredibly helpful way of thinking about things.  I am absolutely against population level eugenics but I know that if I got pregnant, I would want to have access to abortion.  This is because there is such a high chance that any child of mine would have my genetic condition and whilst I do have a high quality of life, I don’t want someone else to suffer through some of the painful and difficult things I’ve been through.

Shakespeare also points out that whilst screening and access to abortion is not the same as historic practices, the culture and context in which decisions are made can promote the same outcomes.  That is, if you are making a decision to have a disabled child in a society which does not value disabled people and which is not set up for or accomodating of disabled people then that free choice is very different to a free choice made in an inclusive society.  Similarly, whilst parents have the choice about whether they get prenatal screening, there has become something routine about doing so, it is considered part of the normal path of pregnancy.

This complicated issue becomes even more so when you try and bring in political views and feminism.  I am not even going to attempt to tackle that paradox here but if you are interested check out The Paradox of Disability in Abortion Debates who explain more coherently than me how “disability rights and reproductive rights can conflict and intertwine, particularly on the issue of later abortion.”  Jenny Morris and Tom Shakespeare both write articulately on the subject as well.

The over simplification of the debate and the nature of the situation has led to a lot of misunderstanding and conflict, in particular in my bubble world between feminism and disabled people who would often agree on many other issues.  This has the potential to become divisive and that often wipes out the opportunity for nuanced discussion and sensitive conversations.  And these interactions should focus on society, not individuals.  Disabled people, or fetuses, are not the problem here.  The society in which we live is.  If parents knew that their child would grow up in a welcoming, supportive, accepting and accessible world then their reaction to screening results or their interest in knowing at all could look very different.

I’m going to wrap up this intensely difficult issue with a couple of quotes for you to think about:

“Very few forms of impairment involve so much suffering that non-existence would be preferable… Prenatal diagnosis can be justified in terms of the effect on parents and other siblings, but cannot be justified in terms of the benefits to the lief which is prevented from coming into existence as a result, except in the most severe cases of impairment”

Tom Shakespeare

“If the responsibility is placed on the individual woman to exercise the choice whether or not to give birth to a disabled child then the responsibility for choosing to bring up such a child also rests on her”

Jenny Morris (discussing the arguments, not sharing her view)

If you want to find out more about Tom’s views and the future of prenatal screening and testing then his lecture at Harvard Law School is worth a watch.