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…

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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.

Disability and paying for sex

Firstly – is sex a right?

Are we all entitled to have sex? I firmly believe we should all have the option of having a good sex life. We should all be able to choose to have sex in the context of a mutually beneficial situation where no one involved is forced, coerced or has no real alternative.

Which brings me onto sex workers. Which is a huge topic with so many different perspectives. Including people who freely chose to work in the sex industry. There are however many people who are forced, coerced or have no real choice. Women can get trapped in the sex industry and this has to be an important part of any conversation around the right to have sex. However they’ve entered, or whatever the reason they stay in sex work, we need to ensure that our desire for sex doesn’t further exploit sex workers. Whether it’s through trafficking, sex slavery, being wilfully mislead or whether it’s because they need the money, they’ve got addictions which need feeding or even situations as complicated as a history of abuse which makes them feel like they have no other option, sex workers deserve the same respect as anyone else.

“[sex] is every bit as important as the right to practice one’s chosen religion or to not be discriminated against. It should be included on this list because, like religion, nobody should be forced to participate, but similarly, nobody should be denied access either.” the conversation

Sex workers and sex surrogates

Within the context of disabled people paying for sex, the phrase sex surrogates comes up a lot. What does this mean?

Sex workers – a sex worker is anyone who works in the sex industry eg porn actors, prostitutes, lap dancers, phone sex workers, sex surrogates etc. The predominant definition requires the worker to be involved in “sexually explicit behaviour”.

Sex therapists – licensed mental health professionals, think counsellor. A sex therapist will not have sex with or engage in any sexual activity with the client.

Sex surrogates – a surrogate does engage in sexual activity with the client. They aren’t (or don’t have to be) medical professionals but they do engage in work which addresses particular sexual difficulties such as erectile dysfunction, anxiety, lack of confidence… Think of this more like a way of being able to practise sex or masturbation which the support of someone. There is an International Professional Surrogates Association which offers training for surrogates.

Should disabled people be able to pay for sex?

Firstly, who would be allowed? Would you have to show that you receive disability related benefits? Prove that you’re disabled? How do invisible disabilities factor into this? Would it just be for people who’ve proven they can’t find a partner? How would people with mental illness show that they were eligible? What would happen to people who faked disability in order to be legally allowed to use a prostitute?

Ok, so that was a bit of playing the devil’s advocate but this is a hugely complicated issue. If you decide that yes, disabled people can pay for sex, you then have a whole load of logistics and specifics to sort out. Especially if you’re also in a society where non-disabled people aren’t allowed to pay for sex.

Rewinding a bit, let’s look at the arguments for and against disabled people paying for sex.

Arguments for

Rachel Watton, from the Australian organisation Touching Base, believes for people with disabilities, being able to pay for sex is a right. She acknowledges that society should change but feels that in the meantime sex should be available.

44% of people in a Guardian poll said they had never had sex with someone with a physical disability and probably wouldn’t. Those odds don’t work well for a disabled person looking for a shag…

Rachel stars in a documentary, Scarlet Road, about her life and Touching Base and providing sex to disabled people.  The film doesn’t address the issues that some sex workers face in terms of exploitation, indeed, the white sex workers featured appear to dismiss and invalidate the experiences of exploited workers.  I was pleased to see that disabled people were included in the documentary but the language used about them wasn’t always so positive.  The word “they” to refer to all disabled people was used a lot, as was “deserving” which to me can conjure up ideas of pity and can feel demeaning.  Why do I deserve sex more than the next person?  Does my disability make me that special?

However, Scarlet Road wasn’t all bad.  They talked about developing training for sex workers who were working with disabled people.  This included things like manual handling, ways of communicating etc.  This has potential to lead to resources and a bank of knowledge for disabled people and their partners.

Within this discussion, the most important voices are those of disabled people and the sex workers. 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.  This figure increases if you ask about paying to see specially trained sex workers.

Would legalising sex work for disabled clients make the industry safer for the sex workers? The pros and cons of legalisation are far too big a discussion to go into in this blog but it is an important part of the conversation so I’d highly suggest going away and doing some reading about it.

What about the therapeutic benefits of sex?  Orgasms can help reduce pain, being touched in a none functional way can have mental health benefits and sex can be relaxing.

Would allowing disabled people to pay for sex normalise the idea of disabled people as sexual beings?  Or would it make it easier to see us as “freaks”..?

Examples of where this already happens

Mark O’Brien, a disabled writer, wrote: “I wanted to be loved … held, caressed, and valued. But my self-hatred and fear were too intense. I doubted I deserved to be loved … Most of the disabled people I knew… were sexually active, including disabled people as deformed as I. But nothing ever happened.” O’Brien went on to see a sex surrogate and lost his virginity with her, she speaks in a TEDx talk.

In Holland and Denmark, support needed around sexuality and sex is something which social workers discuss with their disabled clients and have funded visits to sex workers or sex assistants.

Side note: a sexual assistant is a Dutch model which seems to offer a none penetrative sexual service, instead more focussed on erotic massage, teaching etc. Some sites suggest no kissing, no oral sex and no penetration. Perhaps a sex surrogate lite?

The horrifically named, White Hands offer a masturbation service to disabled men in Japan (I’m hoping something got lost in translation of the name because there are some troubling connotations with it’s English version).  The video I watched spoke of clients who didn’t understand their sexual urges and desires and who got confused or ended up hurting themselves because they didn’t know what to do with their feelings.  The service appears to help clients understand how to react to sexual urges as well as providing masturbation for physically disabled men.  From my perspective, it felt rather clinical… Slightly reminiscent of the Victorian woman going to her doctor to have her hysteria treated by orgasm.

And against…

Returning to Rachel Watton’s stance on the issue – society should change but until it does sex should be purchasable – an argument could be made that providing the service could hinder or prevent society from changing. It puts a plaster over the issue and means that it’s less visible. Disabled people have a means of having sex so society no longer needs to address discrimination, perceptions of disabled people etc…

Legalising paying for sex for disabled people is a way of ignoring the issue of disability and sexuality, society doesn’t need to change because we can get sex at a brothel (assuming it’s accessible of course!)… It’s an attempt to pacify us.  It also assumes that disabled people are only looking for the physical side of sex and that we don’t want or don’t deserve an intimate relationship.  It feels like allowing sex work for disabled people ticks the box of the functional desire for sex and allows society to ignore the need for intimacy which would require a lot more change and participation of society to achieve.

Allowing disabled people to pay for sex focuses heavily on the individual disabled people who may want to use this service and adapting things for them rather than on changing society.  This approach feels much more in line with the medical model approach of disability, something is at fault with this person let’s fix them, rather than addressing how disability is perceived and how we are disabled by society.  If disabled people were seen as accepted members of the community, would we even be having this discussion?

In an Atlantic article, Alex Ghenis and Mik Scarlet echo this tokenistic gesture and the troubling implications on how we’re seen by others.

Alex Ghenis, an American disability advocate and former dating and relationships columnist says of paying for sex: “It commodifies sex in terms of an action. It makes it so society can check this box that men are getting laid, so we don’t have to have broader social change—we are giving them sex through a brothel, so we don’t have to change our social attitudes around socially excluded people with disabilities…And it pities and coddles us, as if we are being given things that will assuage us … rather than have society change around us.”

Mik Scarlet, a disabled TV presenter and musician: “Imagine this, I’m disabled, growing up in Luton, and it’s now legal for me to go to a brothel—to have sex for money—because apparently that’s the only way I’m going to lose my virginity. Instantly, my relationship with sex is distorted, and it means that everyone I meet afterwards is going to say, ‘He’s disabled, that means he’s paid for sex; I don’t want to go to bed with someone who’s paid for it.’ You’ve reinforced the fact that you can’t give it away because you’ve paid for it. We are reinforcing the idea that some people are too hideous and too disabled to have sex like the rest of us, and so they have to pay for it.”

Paying for sex risks making us more “other”.  It could demean our (none paid for) sexual experiences – the idea that if you’re disabled, you’ve probably had to pay for sex and if you’ve paid for sex, the experience is therefore lesser. Paying for sex could further marginalise people with disability. It reinforces the idea we are too ugly, too broken, too disabled to have sex and not pay.  It also makes us ‘special’, a subset of society who are “allowed” to buy sex.  It feels like a strange extension of the charity model of care…

Paying for sex is also expensive, especially if your disability means you can’t work or you live in poverty.  This could result in more division within the disabled community – a tier where more privileged disabled people can afford to pay for sex and less privileged can’t.  Some people would argue that benefits shouldn’t be spent on sex but I don’t feel you can police what people do with their money.  NB. some countries do pay for disabled people to access sex services rather than the disabled person paying themselves.

There is also potential for sex workers who specialise in sex with disabled people, to be seen as a higher class of sex worker.  An elevated role.  Or by allowing sex workers for disabled people, the argument for sex work more generally could be justified.

When it comes to consent, there is the issues of the sex worker, are they freely consenting to the work they’re doing as well as issues of consent for the disabled person. If you happen to have seen Who’s Driving Doug, you may recall a scene where Doug (a disabled man) has been bought a prostitute by his driver. He seems reluctant to make use of this “present” but ends up going ahead with encouragement from the driver, his friend and the worker (who possibly wouldn’t get paid otherwise?). Whilst I think it was a consensual act, it highlighted the pressures that can lead to coerced consent. Feeling that peer pressure means you can’t refuse. Spending the money and then changing your mind but again, feeling you can’t call a stop to things. The pressure society puts on people to lose their virginity… Situations where someone is nonverbal and someone else decides that of course this person would want to use a sex worker because it’s “normal” to have sex… What about situations involving dementia or other memory issues? And what if someone appears to be consenting but actually doesn’t have the mental capacity to do so?  And communication issues?

All about the (straight) men?

Perhaps unsurprisingly, most of the information around this topic I could find is focused on disabled men… From what I could find, there are far more female sex surrogates which suggests that it’s easier for straight men to find someone.  Something I read but can’t find also suggested that disabled women felt more at risk of abuse from male sex workers than disabled men with female sex workers.

And in conclusion…

I’m not actually going to conclude anything.  It’s a complicated, multi-faceted topic and there’s too much I still don’t know and I still have too many questions.  I hope that this post has raised some of the arguments for and concerns with the idea of sex workers for disabled people.  I’d love to hear your thoughts and further arguments for and against.

Forced sterilisation of disabled people

There are a number of reasons for sterilisation including not wanting (more) children, issues with menstruation and society not wanting you to reproduce.

As such, this post will have inevitable crossovers with the post on disability and menstruation, particularly as methods of stopping periods lead to (possibly temporary) inability to have children and sterilisation can lead to stopping periods.  Additionally the argument that a person can’t cope with periods can be used as a way of arguing for sterilisation.

The History of Sterilisation

The history of sterilisation is one intertwined with race, class, disability and Nazism.  So it’s probably not surprising that people don’t talk about it much.  I’d also like to add that I’m focusing on disability here.

I feel that the history of sterilisation is an important part of the discussion.  You may not be aware for example, that forced sterilisation of disabled people predates Hitler.

The existence of disabled people was increasingly seen in the UK and USA as a threat to social progress.  Darwin himself wrote in his 1871 treatise, The Descent of Man, “We civilised men…. do our utmost to check the process of elimination; we build asylums for the imbecile, the maimed and the sick.. .Thus the weak members of society propagate their kind.”

New Statesman

In the 1880s, Francis Galton was wondering if it would be possible to get rid of the “undesirables”.  He went on to argue that reproduction by “feeble minded” people should be stopped.  Thus providing an excellent springboard for the idea of forced sterilisation.  Unfortunately this wasn’t limited to the view of one man sitting in a room pondering, it was to become a popular idea with a range of people across the political spectrum.  We’re not just talking far right Nazis here.  Left wing politicians were also believers in this approach.

In 1907, The Eugenics Education Society, it’s aims were to “bring all matters pertaining to human parenthood under the domination of eugenic ideals” and to “effect improvement of the race through knowledge of the laws of heredity.”  In 1931 they drafted a bill for the compulsory sterilisation of “mental defectives”.  Although the bill failed, it was resubmitted and helped raise awareness for their cause.  Another bill for forced sterilisation of certain kinds of “mental patients” was proposed in 1931.  Labour MP Archibald Church proposed the bill, claiming it was necessary to stop the reproduction of those “who are in every way a burden to their parents, a misery to themselves and in my opinion a menace to the social life of the community”.  Again, this wasn’t passed but coerced sterilisations occurred instead.  Because it never become law in the UK, it is impossible to know how many forced and coerced sterilisations have taken place here.

In 1934, The Eugenics Education Society would recommend legislation to ensure the ‘voluntary’ sterilisation of ‘mentally defective women’.  A contradictory reccomendation if ever there was one…

The movement towards sterilisation and eugenics wasn’t just happening in the UK and Germany.  It was a worldwide phenomena and the first International Eugenics Conference was held in London in 1912.  Attendees included Winston Churchill.

At this time, over in America, disabled people were refused entry to the US on the grounds that they would weaken the characteristics of existing citizens.

President Theodore Roosevelt could not have been more blunt: “I wish very much that the wrong people could be prevented entirely from breeding; and when the evil nature of these people is sufficiently flagrant, this should be done. Criminals should be sterilised and feeble-minded persons forbidden to leave offspring behind them”

New Statesman

Laws were introduced to stop people with certain disabilities from having children, the first such law being in Indiana in 1907.  From that point onwards in America, people with disabilities were forcibly sterilised, often without being told what was happening.  In Virginia, the law was in place between 1924 and 1979 with more than 7,000 people being recorded as sterilised.  I suspect the actual figures were much higher and included people outside the scope of the law.

Indeed, reasons given for sterilisation in North Carolina include “Pauper. Needs close supervision. Hypersexuality,” and “She wears men’s clothing all time” (at the time this was probably meant to be read as “possible lesbian”).

By 1938, 33 American states permitted the forced sterilisation of women with learning disabilities and 29 American states had passed compulsory sterilisation laws covering people who were thought to have genetic conditions. Laws in America also restricted the right of certain disabled people to marry. More than 36,000 Americans underwent compulsory sterilisation before this legislation was eventually repealed in the 1940s.

America was not the only country in the Western world to introduce compulsory sterilisation of disabled people. Sweden sterilised 60,000 disabled women from 1935 until as late as 1976. Thousands of children labelled as having learning difficulties were sent off to live in “Institutes for Misled and Morally Neglected Children” where they were required to undergo “treatment”.

New Statesman

Under these laws, I would have been sterilised because I have a genetic condition. As much as I’m clear I’m not going to have children that is my decision and I would be devastated if my autonomy was stolen from me in that way.

The introduction of these laws, in America as well as European countries, meant that after the Second World War, disabled people who had been forcibly sterilised were not considered to have been the victims of war crimes (and hence not eligible for compensation).  The reason being that other countries had similar laws to the German law which allowed forced sterilisation and indeed, other countries had had those laws before Germany.

Present Day

Forced and coerced sterilisation still happens today, even though it is clearly stated by the UN that forced sterilisation is violence.  Whilst it seems to disproportionately affect disabled women, they aren’t the only victims:

The Issue of Consent

There has, and continues to be, an emphasis on sterilising people with mental illness or learning disabilities.  Perhaps, as they are often the most vulnerable, they are also the easiest to coerce or their very disability provides an excuse – “she wouldn’t understand, she wouldn’t be able to cope…”.  And yes, there will be some people who do have difficulty understanding menstruation and sex but they could also have trouble understanding what has been done to them and why they can’t be parents.

Often in situations where people can’t easily give consent, it’s their parents who provide it.  Parents who have their own, busy lives, their own values, their own prejudices, their own desire to keep their child a child.  As far as I know, most parents struggle with their children growing up and menstruating can be part of that.  If you can stop it, can you also stop your child from becoming an adult? And if so, who is going to stop you?

Another strong argument made is there is no appropriate family planning support available.  This argument is an easy one to counter – why should we forcibly sterilise people when we can increase access to support?!  I suspect a lack of support is one reason why the choice to sterilise is made by parents – explaining to someone who’s got a learning difficult about periods etc can take time and patience and different ways of explaining and parents may not have the knowledge, resources or the time. Indeed, a 1993 study by Roy et al found that alternative contraception as a way of dealing with menstruation had not been explored by families requesting sterilisation.  Admittedly this is an old study and information has become much more widely available with the internet but I suspect that often parents are not exploring all the options.  (Note, I’ve not been able to access the study so I’m getting the info second hand).  McCarthey in 2009 found similar situations where the decision to get sterilised was made in light of exaggerated claims about the consequences of pregnancy and a withholding of information around alternative menstruation control.

Sometimes, as a parent, it comes down to firefighting and you have to deal with other things first, leaving no time for a potentially long process towards understanding menstruation and sex. Because of this, accessible information is a must along with specially trained sexual health workers.

The Consequences

And what are the consequences of sterilising children?  I’ve already written a lot so I’m not going to add any detail but children’s bodies are growing and changing and sterilisation is going to impact that.  And yet if you want to prevent someone from starting their periods, as is often argued as the reason behind it, you need to do that to an 8-12 year old girl.

In addition to physical effects of sterilisation, forced and coerced sterilisation also has psychological effects including extreme trauma, depression and grief. It also further “others” those of us with disabilities who no longer have the option of reproducing (I know adoption etc is available but that’s another area where disability works against you…).

One issue that’s come up a lot in my reading is that sterilisation is protecting people from unwanted children as a result of rape.  The idea being that if the risk of pregnancy is taken away, then these vulnerable people can then be released from institutions and allowed to participate in society.  None of this acknowledges that the risk of rape remains and that instead of locking people up or taking away their fertility we should be dealing with the abusers.  It also suggests that rape is ok provided there isn’t a baby as a result…

Alongside this is the issue of consensual sex where the people involved are deemed unfit to raise a child.  Removing the risk of pregnancy is somehow enough to allow people to live “out” in society… In some instances, people were institutionalised in order to convince them to be sterilised and in others, discharge from institutions on the condition that the person would be sterilised first. (Silence is Roaring, PDF).

Finally… 

I’d just like to add, to further complicate, or demonstrate the complexity of the issue, that I would actually like to be sterilised. As per a previous post, I struggle a lot with my period and I know I, not going to have children, partly because of my Vaginismus and partly because i have chosen not to pass on my genetic condition. Additionally, I can’t care for myself, I can’t pick up a child, I can’t do so many things related to looking after a child that I have chosen not to have children.

But the key word here is chosen. I have considered my options, I’ve made an informed decision. My choice.

Side note: despite, or perhaps because of, the history and ongoing practice of forced sterilisation, I’m actually struggling to get any medical professional to understand where I’m coming from and to agree to go ahead with the process. Perhaps because unless I’m in my wheelchair I don’t always look disabled?

Disability Devotees

Whenever we are discussing people’s sexual attraction it is necessary to be open minded. People can’t choose what/who they are attracted to and society has a very narrow definition of what is ok to sexually desire. We have to remember that until recently, homosexuality was considered a mental illness.

With this in mind, my intention here isn’t to cast out devotees, rather I want to open up the conversation and raise concerns with practising devoteeism. To desire something does not mean you have to act on it.

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My wheelchair, functional, pretty, but is it desirable?

What is a devotee?

“Someone who identifies as having a sexual attraction to disability — someone who finds the kinds of bodily difference that impairment can invoke sexually appealing, titillating and desirable.” – Kirsty Liddiard

Often this is focussed on a particular aid such as wheelchairs, canes, splints etc. Indeed, two of the most common types are an attraction to mobility impairments (and the related equipment) and an attraction to missing limbs.

What’s wrong with that? 

The disability, it would seem, has to be physical, it has to be visible:

“When we were in bed together I couldn’t see his disability at all so that would sometimes hamper things for me and I’d be looking over to the side at his chair or his cane to keep me going. Disability is a really important part of my sex life. I don’t orgasm without it.” – Meet the Devotees

If that was me, I’d feel like I was being rejected. I would understand very clearly that this woman wasn’t attracted to me, she was with me for my wheelchair. And is that any different to being with someone for their money? Our relationship certainly wouldn’t feel like an equal one. And what would happen if I suddenly got better and didn’t need the wheelchair?

One of my major concerns with devoteeism is the reduction of a person to their wheelchair, leg brace, impairment etc.  Obviously not all devotees will do this, having done a bit of reading, there is, as with most things, a spectrum.  Some people are however, attracted purely to the aides.

As Emily raises in her BBC documentary, often devotee porn is focused on an everyday, nonsexual, part of being disabled such as transferring from a wheelchair to a car. Indeed, as part of her research, Emily released a self made video of her doing just that which has received thousands of views.

To me, this is sexualising the everyday struggles (or potential struggles) of someone with a disability. Surely this is much more about power or pity than sex? And watching people struggle so you can get off feels pretty degrading…

My ankle splints, and piggy socks!

Devoteeism objectifies disabled people who are already objectified a lot by society as it is.  It treats disabled people as things and that can reduce the perceived need for consent – if you are a thing, then it doesn’t matter that you’ve not consented.  This doesn’t even consider situations where informed consent is hard to gain eg communication issues.  And if the person is not open to you about their devoteeism, can you truly consent?

We cannot ignore the fact that we live in a society which sees a lot of disabled people as asexual and reducing us to our impairment or our aids is further objectification which risks undoing any progress we have made towards being seen as sexual beings. We are more than our wheelchairs, we are people and in my opinion, devoteeism can do a lot of damage to our identities.

If we are told over and over again that we are not sexual, and then someone comes along who is fetishising our disability, we are at risk of seeing that as the only sexual option for us. And this further tips the scales of equality against us. It reinforces the idea of disabled people as helpless, pitiful, in need of care.

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Me in my wheelchair, complete with the scary figure of death watching over me (or  my nice OT but that’s a less dramatic interpretation)

As with most things, there are two sides to the story, some disabled women will enjoy the experience and find it empowering but others will be disgusted by it.  The issues of awareness and consent are crucial to the outcome and Kirsty Liddiard notes that “Devoteeism can enter abusive territory very quickly”.

I think, for me, as I said at the beginning, the important thing is what you do with your feelings and your attraction. That is the difference between a loving, empowering relationship between a disabled and abled person and a creepy, manipulative, potentially abusive one.

Side note: Stealing pictures

There is a part of the devotee culture (not sure if culture is appropriate but I hope it gets my point across) that is undeniably seedy. Like society in general, there will always be a cross section of morals and ethics.  I am referring here to those people who are in the habit of stealing photos, for example from facebook, to be used on devotee porn sites, an act which can only be construed as sexual violence. These photos then receive obscene comments causing further pain, shame etc for the victims.

Another increasing concern is the photographing or filming of disabled people in public who are unaware and unconsenting and who are just going about their life. These images and videos are used as porn and, in a way which has horrible parallels with child abuse, devotees can and do collect and save these images for their sexual pleasure.

Whilst I’m on the subject, the stealing of photos of disabled people is a wider issue, one which Beth raises from her personal experience.  Kirsty Liddiard writes more about this in her paper, Liking for Like’s Sake – The Commodification of Disability on Facebook (PDF).

Side question: Everything I came across on devotees was about non-disabled people, are there many or any disabled devotees?  I think that’d be an interesting perspective on the subject.  If you’re out there and want your views heard, let me know, I’d love to interview you!

Sex toys and disability

Going to assume, given the hush hush nature of talking about sex toys, that this should come with an 18+ warning…  That’s your warning.  I’m going to be talking about sex toys and disability, in case the title didn’t provide you with enough info… Personally, I don’t feel the info is explicit in nature but I’m aware people may disagree…

(Side note: this is focused on people with physical disabilities)

Apparently, three quarters of women own at least one sex toy and 36% of men own a sex toy. So even if people are ashamed of talking about sex toys, most people will have some experience with them.

And they’re great.  They can enhance sex or masturbation, and if you have a disability or not, they can stimulate you or your partner(s) in ways which could not happen otherwise.

So, what are the best sex toys for disabled people? 

Let me refer you to a previous point I made about how everyone is different.  Everyone has different sexual interests and people with disabilities are exactly the same.  Also, you will need to consider your own disability as everyone has different needs, even with the same condition.

To help get you thinking about what’s going to work for you, the key issues for me and sex toys would be; I can’t be penetrated; my energy levels are crap; my hands are quite unhelpful when it comes to things like repetitive movements and fine motor skills (like buttons). I have high levels of pain throughout my body as well but I’m going to look at pain and sex in more detail in another post.

What should I consider when I’m looking for a toy?

A good question to ask yourself when you’re looking at sex toys is what I do want to use this for?  Yes, I know, stupid question.  In particular, are you wanting to use this alone or with someone or have someone use it on you etc?  All of this will effect what’s going to be the right choice for you.

Further considerations include, can you hold and manipulate your sex toy?  No?  Maybe look at something which fits into underwear and can be held in place that way.  Can you control it using on the toy buttons or would a remote control be easier?  Does it matter what it’s made from?  Do you have allergies?  Does your skin tear easily?  Yes? Then maybe look for something made of a very smooth material like silicon or glass and maybe something which doesn’t vibrate.

Can you get the batteries in?  Would you feel comfortable asking someone else to do it?  If not, either manually operated or rechargeable toys might be best.  Also remember that sex toys need cleaning.  If you’ve got a partner they may be able to do that but if not, and you can’t, you’ll need to ask someone else.

Do you live with carers or your parents?  If so, you might prefer a quieter vibrator or toy without a motor.  If you’ve got decreased or increased sensation, then perhaps look at toys which have different levels of vibration etc or something which doesn’t vibrate.

From the point of view of energy levels, lighter is probably better when it comes to weight as would be something you don’t need to hold in place.  Or you could place a cushion so that the toy can rest on it whilst still stimulating you or buy a cushion made for the job.  And cushions are good for sex more generally – great for propping up joints etc.

You can get dildos which attach to the floor, tiled walls, your leg, your face.  Think how much more exciting your sex life could be compared to all the people who think disabled people can’t have sex.  To the 44% of people who wouldn’t entertain having sex with a disabled person, your loss.

Think about the wider environment, nice sheets can make a huge difference to how you’re feeling and make it easier to move around.  Or how about using handcuffs to help keep you in one place?  And use lube (again, if you’ve got allergies check the ingredients or ask for a sample and test it on  your arm or somewhere first. Do not try it out on your genitals if you think you might be allergic!).  You might find particular places easier for sex, on the bed or propped up on the floor by the bed or in your wheelchair or in a sex swing.

I’m afraid I’m focusing heavily on cis women here, I’m not sure I’ve got much to say about men’s sex toys but hopefully someone else does.  If that someone is you, please add advice in the comments (actually, everyone should do that, just keep it on topic please).

Most importantly, try things, have fun and learn what works for you.

Useful links:

http://disabilityhorizons.com/2014/07/disability-and-sex-lets-be-frank-about-sex-toys/

http://disabilityhorizons.com/2014/04/sex-tips-sexy-crip/

http://www.autostraddle.com/our-bodies-our-sex-toys-6-accessible-sex-toys-320004/

http://www.comeasyouare.com/sex-information/sex-and-disability/

Nonsexual virgin vs the hypersexualised fiend; stereotypes of disability and sexuality

This should probably have been the first in my blog posts about disability and sexuality…  Essentially, there are two ideas of the disabled person and sexuality; the nonsexual* virgin and the hypersexual, unstoppable fiend.

Where do these ideas come from?

When it comes to physical disability, people are reduced to things, objects to be pitied, to be looked after.  There is a view that the disabled person is childlike 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.

Then there’s the issue of reproduction – even when a disability has been acquired, somehow it’s assumed that the child would also have a disability and regardless, that having a disabled parent would mean that child suffers.  There is this idea that a person with a disability cannot, or should not, have children and the obvious conclusion is then that that person cannot or should not have sex.

And who would actually want to have sex with someone with a disability…? As disability is still viewed on many levels as a deformity, an abnormality, people with disabilities are considered undesirable.  So no one would be interested in a person with a disability so general thinking doesn’t even have to consider the idea of a sexual disabled person.  And tied up in this is the concept that disabled people can’t have sex; this will feed into and be fed by the idea of the nonsexual disabled person.

Historically people with disabilities have had to live in institutions which often strongly discourage intimacy between residents, again reinforcing this idea that disabled people don’t have sex.

At the other end of the spectrum, the hypersexual stereotypes are more commonly linked with learning disabilities, bipolar disorder and other mental health issues.  This seems to be because of a perception of lack of control which leads to indulgent, hedonistic behaviour which the person may not fully understand or be fully lucid for.

“Because people with mental disabilities are often not taught or shown the difference between social and private behaviour (or are unable to learn this difference), activities such as masturbation, displaying of one’s genitals, and inappropriate sexual advances may be carried out in public, or in the company of others. For the most part this does not have to do with a lack of intelligence, but a lack of informative education and teaching methods that allow people living with mental disabilities to live within a larger society.” – http://infochangeindia.org/disabilities/disabled-sexualities/asexuality-and-hypersexuality.html

What damage do these stereotypes do?

The nonsexual image means that often people with disabilities aren’t see as prospective partners.  Depending on the disability, research has shown that disabled people are less likely to have a long-term partner or marry than non-disabled people. Then we have the sickening results of a 2014 newspaper poll (I think it was the Guardian) which asked people if they had ever had sex with someone who had a physical disability, 44 percent said “No, and I don’t think I would.”  Given that estimates suggest 20% of the world’s population has a disability, this is ruling out a lot of potential partners! Although if you were one of the 44%, then I probably don’t want to have sex with you either…

At the other end of the spectrum we have the assumption that people with disabilities are out of control when it comes to sex, this tends to be an assumption used when the person has a learning disability or mental health issue as opposed to the nonsexual person with a physical disability.  Concerns around unplanned pregnancies have led to a history of forced sterilisations under the guise of protecting the person with the disability.  This comes from both the angle of protecting the person as well as protecting the potential child who could have a disability and from the belief that a person with a disability can’t be a good parent.  There’s a great podcast about this issue over on Stuff Mom Never Told You.  Whilst it’s mostly focused on the historical aspect of racially motivated sterilisation it’s still a relevant and interesting piece.  As is their Sex and Disability podcast.  edited to add: The Australian magazine Marie Claire also looks at the forced sterilisation of girls and women with disabilities (pdf).

As well as forced sterilisation, we also have the issue of inappropriate sex education.  I’ve heard of disabled young people who missed out on any sex education because it wasn’t deemed necessary… And if you are lucky enough to receive sex ed, then it’ll probably be aimed at ‘normal’ people and you still won’t be empowered through information.  And it’s not just that you don’t know how to “do it” safely; if you don’t get a comprehensive education, you can find yourself at risk of abuse or struggle to do anything about abuse – without empowering information, how do you work out appropriate boundaries, how do you tell someone that your friend put his finger in your vagina if you don’t have a word for vagina… This is turning into a post about the importance of sex ed so I’ll leave this point (almost) there.  The important message is we should all get appropriate sex ed. Thankfully we live in the world of the internet (if you’re reading this you do anyway, I acknowledge that there’s still a lot of the world without it) and sites such as Chronic Sex and Sexuality and Disability are out there to help (although they still require a certain level of literacy and understanding so will exclude some people…).

And then there’s the impact the nonsexual physically disabled person myth has on health care.  I recently tried to get a coil fitted, failed miserably, and then asked if I could try another kind of contraceptive pill.  On both occasions, the two different doctors I was dealing with, both assumed I didn’t need it as a contraception.  I don’t but that’s not the point.  The point is I could have needed it as a contraception but because they assumed not, I didn’t get asked the same questions or given the same advice such as if you’re sick it might not work.  Or any information about using condoms to prevent STIs.  Thankfully I’m fairly clued up on sexual health but a lot of people aren’t, I return again to the issue of poor sex ed…

*I’m using the phrase nonsexual or desexualised because asexuality is great, when it’s your identity, not when it’s forced on you by society and I think using the same terminology will confuse the issues and take away from someone’s actual identity.