Some lighter viewing…

Ok, so that last post was intense and this post is not to negate the importance of those issues but to recognise that you might need to give your compassionate side a breather…

Wild Sex on Youtube is a series of short videos about.., you’ve guessed it, wild sex!  I’ve been reading the interesting but a bit heavily written The Nature of Sex – The Ins and Outs of Mating in the Animal Kingdom by Carin Bondar.  If you are really interested and really into animal sex I’d recommend it but it isn’t especially accessible.  So instead you might want to check out this series which includes the sex life of slugs, bonobos, porcupines and many other critters.

There is also her TED talk which picks out some of the most interesting titbits:

And after sex sometimes comes a baby… and in the wild that’s not always so easy…

And these may well grow up into terrifying predators…

But if you prefer humans, try this series where kids and grandparents answer the most googled who/what/how questions:

Advertisements

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 contraception

“I have the jab so I can’t be blamed for getting pregnant”: Contraception and women with learning disabilities

Michelle McCarthy (pdf)

The very fact that there is a paper entitled this is horrific.  And really shouts about the need to discuss disabilities and contraception.

This is an area which is very entangled with forced sterilisation and issues of consent but I do not believe that either of those should prevent the conversation about disability and contraception.  NB, I have already written about my experience of disability and periods so this is more focused on contraception as birth control.

I’m assuming here that the person in question has capacity to consent to using contraception, whether it’s for safer sex or for other reasons.

Having read about the topic for a while now, there feels like there are a few sections to this debate: coercion to use certain types of birth control, unwillingness to provide birth control and having certain types of birth control off limit.  This is certainly backed up by an Open University report into contraception and learning disabilities:

In some instances women made active and informed choices about contraception that enabled them to control their reproductive futures. In other cases women had used contraception because they felt they had to, or had been coerced; consequently they also had little say in the type of contraception they used. Some of the women also told us they used contraception as medication to regulate menstruation or alleviate menstrual pain.

Coercion to use birth control

As seen in the quote at the top of the post, there can be a pressure (overt or covert) for certain people to use a method of contraception that is daily or long lasting (as opposed to condoms etc which you use at point of sex).  This seems to be strongly related to this idea that women with disabilities should not get pregnant.  This seems particularly evasive for women with learning disabilities.  A group of people who are possibly more vulnerable to coercion.  This is despite evidence that shows a persons IQ is not an indicator of how good a parent they will be.  This attitude is echoed in experiences of people with disabilities who have been pressured into a termination.

There is also the fear around high rates of abuse of women with disabilities, particularly those with learning disabilities, and the fear of a person getting pregnant following abuse.  However this doesn’t address the issue of abuse itself or STIs or psychological impact.  We should not use the risk of abuse to control women’s bodies.  We should be talking to women about what is appropriate in relationships, what to do if things become inappropriate and what puts you at risk of STIs and pregnancy etc.

Two women in the Open University report, both with high support needs, were coerced into having the contraceptive implant when they had lived in a care home.  This is echoed in other literature I’ve read; the very strong “suggestion” that the place at the care home will not be available if they don’t use birth control.  There are other cases discussed where women were put on birth control because they weren’t believed when they said they weren’t having sex.

Coercion can also take the form of discussing the benefits of birth control – such as no periods – whilst not discussing the pregnancy aspect.  This has been used to get someone to use birth control due to fears of risky behaviour.  Passive acquiescence is another form – the patient not being fully informed and the idea of doctor knows best being played on so the patient lets the professional make the decision.

Unwillingness to provide birth control

When I go to the doctors about birth control, there is a general assumption that I do not also need condoms.  When I was not visibly disabled, I would be offered condoms or at least reminded that the pill doesn’t protect against STIs.  Similarly when I was not visibly disabled I was reminded that the pill is ineffective if you’ve been sick, had diarrhoea or are on antibiotics.  This no longer happens.

A lack of accessible literature on birth control and other topics relating to sex education or an unwillingness by medical professionals to take the time to explain these issues is one way in which society is undermining access to birth control.

Another is the assumption that disabled people do not want children and so the conversation is steered in a certain direction.

Off limits

Obviously certain kinds of birth control may not be compatible with certain health conditions and I understand the importance this.  However it seems that there are some medical professionals who filter their information based on the person having a disability eg not talking about the pill to people who have a condition which may cause them to forget to take it.

Taking a personal example for illustration, I would really like a hysterectomy.  I will never have children and having my period is difficult and humiliating for me.  But based purely on my age, that is out of the question.  Obviously this isn’t discrimination because of my disability but other options are out so surely this should at least be a consideration?

As a second option, I would go for the coil but they won’t give me anaesthetic to get it inserted so that is out for me.  Note, the only reason I can’t have the coil is my disability which means I can’t have it inserted without anaesthetic.  There is no greater risk for me to have the coil than for me to take the pill.

And the pill was next on the shopping list of choices…  Whilst I’ve finally found one that is mostly ok so far it has led to a lot of weight gain and I have tried five different types to get here.  The other main options would be the injection, which they don’t want to give me due to my health, and the implant which has low odds of stopping periods compared to the other options.

There are other ways of making birth control off limit to women with disabilities without having to say no.  For example if you can’t get to the doctors – my surgery don’t do house calls, won’t prescribe the pill by phone and obviously the other options are out if you can’t get to the surgery.  My surgery is a group of surgeries and fitting the coil is only carried out at one of these.  There is the inaccessibility of doctors and sexual health clinics and the inaccessibility of information.

All of this echoes prejudices which people carry about disabled people and sexuality, whether consciously or not, and needs challenging.  In order to have a healthy sex life, everyone needs to have access to contraception and information.

End note: The Open University research concludes by acknowledging that whilst little is known about the contraceptive choices of women with high support needs, almost nothing is known about those people who do not have capacity to consent.

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.

The capacity to consent

Whilst this post is going to focus on disability and consent, it is worth taking a few minutes to look at consent more widely. You cannot consent if:

  • you are asleep or unconscious
  • you are intoxicated
  • you are being threatened

If you consent once, that does not mean that person has lifelong privaledges.  Consent is a one time thing and you can change your mind, even part way through.

The tool which is used to assess whether someone has the capacity to consent in the UK is the Mental Capacity Act.  It starts with the idea that you assume everyone has capacity to consent.  You then only question this if you have “reasonable belief” that their capacity may be impaired.  Simply having a particular condition is not enough to deem you unable to consent.  This applies to a lot of things in life such as medical procedures but here I’m looking specifically at sexual activity.  We will see that just because someone can consent to something in one part of their life, doesn’t mean they can in another.

I read a fantastic paper that discussed the idea that capacity to consent is not a fixed thing. As people’s knowledge and experience grows so does their capacity to consent. Anyone, disability or not, who has had no sex ed and knows nothing about sex is going to struggle to truly consent to sex or sexual activity. As they develop knowledge, they develop the ability to consent. So at one stage in someone’s life they may not be able to consent to any sexual activity, with a bit of sex ed and support, they may be able to clearly consent to dating one particular person but not anything beyond kissing, and then later maybe consent to kissing another person or doing more than kissing.

When it comes to assessing capacity for consenting to sexual activity, this will involve a number of things.  Their health records may need to be reviewed, the person’s carers and other professionals will need to be engaged but most importantly, the person in question needs to be directly involved.  All of this will be looking at the person to judge their level of knowledge and understanding of the issue.  This is an individualised process and as we saw above, should start from the point of assuming the person is able to consent and not making assumptions based purely on their diagnosis or condition.

There are a number of tools and assessment processes already established and available to professionals who are undergoing work on sexual competency and consent.  These look at knowledge, the ability to reflect and evaluate situations, and understanding that one has a choice to participate and so does the prospective other person.

When I’m talking about knowledge, I mean things like understanding consenquences of sex, the ability to identify abusive situations, being able to be assertive and communicate* no as well as STIs, pregnancy, contraception and so on.  Essentially, everyone should have sex and relationship education.  Remember, we start by assuming someone can consent and thus, we approach sex ed with the idea that everyone potentially may have sex.

This goes wider than capacity to consent due to disability.  Can a young person consent to sex if they have not had thorough sex education?  A topic for another day I think…

Assessing a person‟s capacity to consent to sexual relationships is complex. What also comes to mind is whether we are in danger of applying criteria and intervening in the lives of young people with learning disabilities in ways which we do not do for other young people.

Colin Morrison

Obviously a lot of this discussion and the assessment process will be down to how a person’s disability affects them. Martin Lyden says that for people with severe learning or intellectual disabilities or other cognitive impairment, the assessment should establish whether the individual has: “awareness of person, time, place, and event; ability to accurately report events and to differentiate truth from fantasy or lies; ability to describe the process for deciding to engage in sexual activity; ability to discriminate when self and another are mutually agreeing to a sexual activity; and ability to perceive the verbal and non verbal signs of another’s feeling.”

Again, Lyden stresses the importance of situational based capacity to consent.  The ability to consent to sexual activity in one relationship does not necessarily mean that the person has a more global capacity to consent.  Equally the reverse is true.  We cannot make the assumption that because a person doesn’t have capacity to consent in every single situation that they can’t have it in any.

One of the reasons for our history of overprotection when it comes to disability and sex is a fear of risk.  Risk is seen as the end of the world when it comes to disabled people but almost everyone engages in risky behaviour at some point in their life.  We do it as children to get to know our world and ourselves and many adults do it on a friday night when they drink too much, smoke too much, maybe take drugs and go home with a stranger.  The assessment is on the person’s ability to consent, not what they do with that.

An individual may have sexual consent capacity even if he/she engages in unwise, illegal, or socially proscribed sexual behavior

-Martin Lyden

The key to all of this is assessment.  Unfortunately, this was one issue raised in a report by Barnados regarding learning disability and child sexual exploitation (CSE).  Whilst the report focused on CSE, one part of this is understanding whether a victim (over the legal age of consent) had capacity to consent.  A number of CSE professionals in the UK recognised that this was in need of urgent consideration.  There were concerns about how agencies responded to people with learning disabilities once they reached 18, including inadequate protection or not being identified as vulnerable.  Concern about ability to assess capacity to consent was another key issue, particularly where workers had little experience in CSE and/or learning disabilities.  Lack of resources was predictably another concern.

Lyden suggests that a committee of people should be involved in assessing capacity to consent to avoid bias and to avoid blame if the person does get pregnant, and STI etc.  The problem is that this all takes time, money and the understanding of the importance of sexuality to our identities.  But attitudes are changing and I remain hopeful.

The balance between providing someone with their rights and freedoms whilst still ensuring their safety is a difficult one and an individual one. However I do believe that the process of assessing capacity to consent highlights wider issues around how we teach all young people about sex and relationships as well as helping build people’s knowledge so that they have the potential to have a fun and pleasurable sex life.

Note: All of these considerations will apply to individuals with conditions like dementia which is of increasing importance in our ageing population.  It also highlights a gap in terms of deteriorating capacity to consent.  Professionals need to be able to recognise that it may be necessary to carry out an assessment to establish whether sex is appropriate between two married people, one of which has dementia.  It will be interesting to watch that space.


*Unfortunately I have seen and heard of too many cases where it was assumed that because a person was non-verbal, they were automatically unable to consent…

Sexuality and learning/intellectual disabilities 

The heavy stuff:

Firstly, I am going to use the phrase learning disabilities as this the English convention right now.  I understand that different countries use different terms and that some people may take offence at the phrase.  Language differs all over the world and changes over time but that is a discussion for another day.  The amazing crippledscholar talks about it over on her blog in several posts.

By learning disability, I am using the Mencap definition:

A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.

The other disclaimer here is that I am not someone with a learning disability and I have no immediate experience of sex and learning disabilities.  However, I am using reputable sources to compile this and I wanted to include it in my series about sexuality and disability because I think it’s an important part of the discussion.

If you have more experience in this area and would like to write a post, please let me know, I would love that.


Now let’s get down to business…

Relationships and sex can be great.  Everyone should have the option to be part of a relationship or to have sex, as long as they have the capacity to consent.  The second part of that sentence is crucial and I’m going to do an entire post around it at some point so for now, assume I’m referring to people who can consent.

Many people with a learning disability say that relationships are important to them – yet only 3% of people with a learning disability live as a couple, compared to 70% of the general adult population. – Mencap

So what’s going on?  Obviously there’s a mix of factors.  As we’ve seen before, there are people out there who say they wouldn’t have sex with someone with a disability so that will be one part of the issue here.  Other limiting factors include difficulty meeting people and social isolation, again this is common across the wide spectrum of disabilities.  Historically, living in institutions limited disabled people’s ability to engage in relationships.  The same goes for a lot of supported housing where there are strict routines and rules about people staying over and a lack of privacy.

Risk management

However, when it comes to learning disabilities in particular, there is a tendency for the people around the disabled person to risk manage.  This comes up in mental health services and in relation to other disabilities as well but seems more prevelant in the are of learning disabilities.  This idea that a person should not be allowed to take risks because of their illness.  The idea that people should life a risk free life simply because of their disability.  Think about it, we all take risks every day.  And some choices made by adults are riskier than others but we don’t stop them from making them.

We are less concerned by intimacy and love in learning disabled people’s lives than we are about (containing) sex #sexualities #cedr16

– A tweet from the Centre for Disability Research’s 2016 conference

I appreciate that caution may be appropriate depending on the situation but there is a difference between risk management and just flat out restriction.  And these attitudes then mean that sex education isn’t needed because “these people” won’t be having sex which in turn limits the persons ability to make safe choices.

When it comes to sex and disability, risk is privileged over pleasure.

This need to protect people from themselves is tied so much into the idea that anyone with a disability is child like.  I think this belief is probably more ingrained when it comes to learning disabilities.  Seeing someone as childlike means you don’t even think about them as a sexual being let alone think about how you can help a person safely explore their sexuality.

A report from Barnados around child sexual exploitation and learning disabilities says:

Professionals spoke at length about how young people with learning disabilities
can be overprotected and not given opportunities to learn, develop and take
risks in the same way as their non-disabled peers. Examples of this included
how young people’s experiences of the world can be confined to a door-to-door
taxi or bus service to and from a special school. In relation to the increased
potential for vulnerability to sexual exploitation, one example that interviewees
gave was how young people with learning disabilities may feel that they need to
keep relationships secret:

‘They’ve often not been allowed to have experiences that other young people
often have, so they may have to keep secrets because they do enjoy risk-
taking behaviour or flirting, for example.’

I think another key point in the discussion around sex and learning disabilities is that in most cases parents are far more involved in their child’s life that they would be for a child of the same age without a disability.  This can make it difficult to bring up sex at review meetings and other spaces where the conversation about relationships and sex could be had.

Hypersexual

As I mentioned in a previous post, there is a prevelant idea that people with learning disabilities are oversexual.  This has led to people being sterilised, “for their own good”.  Somehow this idea of a highly sexualised person with learning disabilities is used to prevent the person from engaging in sex and relationships completely.  It is somehow seen, by some people, that because of their learning disability, the person is inevitably going to be being taken advantage of and abused.  And whilst abuse is a real issue, this erases the idea that a person with a learning disability can be in a healthy, happy, consensual relationship.

Anyone with inadequate or non existent sex education is vulnerable to abuse and I will be writing a post about disability and sexual abuse.  If we don’t talk openly about sex, it perpetuates the idea that it’s taboo thus meaning that if something does happen that isn’t ok, people don’t know what to do, how to explain it or who to talk to.  Good sex education should cover consent, communication, safe sex and the physical and emotional aspects of sex.  This is the case for everyone even if you don’t think they’re going to have sex.  Empower people with information!

And if we don’t talk about sex and don’t ensure people know about consent and boundaries and what’s appropriate etc, then it can make it very hard for someone to know or understand that they’ve been sexually assaulted. In the Barnados report mentioned above, one young girl with a learning disability explains that she didn’t know it wasn’t ok for an adult to have sex with a child so she didn’t know she could say no.

Myths around oversexual people with learning disabilities can lead to further issues.  I have come across cases where someone with a learning disability has been blackmailed and controlled with the threat that everyone will be told they are a paedophile.  The fact this is used and has been successfully used as a blackmail technique shows how ready some people are to believe the hypersexualised trope.  On the other hand, if a person with a learning disability discloses being abused, they are often not believed because of this idea that they are non sexual.

The consequence of the view of people with learning disabilities as forever
children, assumed to be asexual, has been an overemphasis on protection and a denial and repression of sexuality or sexual behaviour. The view of the sexuality of people with learning disabilities as dangerous, informed by eugenics, involved control through institutionalisation, segregation and sterilisation. These stereotypes have provided what McCarthy calls contradictory but powerful “distorted frameworks” through which the sexuality of people with learning disabilities can be viewed.

Pregnancy and parenting

There seems to be a huge fear about people with learning disabilities getting pregnant which will inevitably feed into how people feel about the issue of sex.  This is despite evidence that shows a persons IQ is not an indicator of how good a parent they will be.  It is because of this fear that a number of women with learning disabilities find themselves on contraception, whether that is forced, coerced or heavily suggested.  There has been research done which shows that in a lot of cases the young woman isn’t told why she is taking this pill or being given this injection etc.  There are also a large number of cases where contraception is given to prevent periods and the link to pregnancy is not discussed.  This takes away bodily autonomy and can reduce care givers perception of the need to discuss safe sex despite not reducing the risk of rape and STIs.

LGBTQ

Some people with learning disabilities will identify as LGBTQ or be questioning their sexual orientation.  This can be difficult for anyone and support and information around sex should be inclusive of everyone.  It can be hard enough to be a sexual person when they world sees you as asexual, let alone not be heterosexual on top of that.  There are a number of resources out there including Secret Loves, Hidden Lives.

Support

If you are a person with a learning disability or you’re the parent of someone with a learning disability then there is support out there to help you navigate sexuality.

From what I understand a lot of young people with learning disabilities miss out completely on sex education or it is taught in a way which is not appropriate.  Because of this, services have been set up to help fill that gap although given the current political situation, I think they are few and far between.  But where they exist, they can be very powerful tools.

The following quote comes from someone working on a project specifically around sex and learning disabilities in London:

Through the Westminster project we talk about safeguarding, consent, what is appropriate in private and public spaces, and what the differences are between good and bad touch.

Much of it comes back to letting people with a learning disability know that having a relationship is ok and that it can be wonderful and make you happy. And we talk about how it is ok to be attracted to people of the same sex and that not all relationships are between a man and a woman and end in marriage and children.

While we must accept that for people with a learning disability it may always be that little bit harder to embark on a first relationship, there are ways we can make it easier.

– Miguel Tudela de la Fuente

There are specific resources out their to help people with learning disabilities and those around them to navigate the world of sex and sexuality.  I’ve listed a couple and would love to know if you’ve come across any that have been helpful:

Note: I haven’t discussed contraception and people with learning disabilities here.  I want to but it was getting long and I recently got attacked online for being a forced sterilisation apologist (which I’m not) and I’m feeling a bit raw still.