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.

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.

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!

When sex hurts: Sex and chronic pain

The post is looking at when sex exacerbates existing non sex related pain rather than pain caused purely by sex.  Although not discussed here, changes to appearance, self esteem etc will all impact on your psychological wellbeing which can then impact on your sex life.

Chronic pain can be distracting, it hurts obviously and it can impact heavily on your life. Including your sex life…  Being in pain all the time does not make you (or at least me) feel sexy.

I wanted to do a post specifically about pain because I think the impact pain has on sex can be different to other disabilities. My first point would be to talk to your doctors… However,  I know that that isn’t always all that helpful… indeed, the NHS seems a bit lacking for in depth support…  (but yay, they have something, I guess)

I don’t have a magic wand to make sex with chronic pain easier but having sex can help with the pain so it’s worth a try, right?!  Orgasms cause endorphins to flood your body which helps with pain relief.

In no particular order, here’s some things to consider:

  • Communication – talk to your partner, its ok to be worried about the impact of sex on your pain, particularly if you’ve been avoiding it. Talk about where the pain is worse right now, should your partner avoid touching parts of you today etc
  • A lot of conditions fluctuate, make sure your partner understands this; being able to do something one day doesn’t mean you can do it the next.
  • Plan ahead. Unlike the movies, sex doesn’t always have to be spontaneous.  There are so many reasons why that doesn’t work such as children, working unusual hours, carers etc.  And if it helps, you can try and schedule in some rest time before hand and recovery time afterwards.
  • Find out what the best time of day is for you in terms of low pain, higher energy levels and higher libido
  • If being touched is painful (or even if it isn’t!), use none contact ways to arouse each other eg sexting, phone sex, talking flirty or dirty, mutual masturbation, pornography, erotic literature or try light touch such as feathers and silk
  • Massage is another way of being intimate, just be careful with painful joints, muscles etc
  • If your hands are in pain, try using your tongue
  • Warming the bed beforehand eg with an electric blanket may ease some of your pain
  • Sex toys might be easier for you and your partner
  • Cushions – well placed cushions can be invaluable! Think propping up hips etc
  • Where are you having sex? Would your wheelchair or riser recliner chair or electronic bed be more comfortable or in the water?
  • There’s also the impact of pain meds, they can decrease your libido, and you need to make sure you are on the right meds for you at the right dosage. If your pain isn’t controlled at all then of course sex will be harder
  • If your partner is your carer and you need help getting changed or into position, maybe you could ask someone else to get you ready or make the care into the foreplay.
  • Go long and slow or short and sweet, whatever works better for you
  • Have a think about what positions are best depending on where your pain is etc
  • Try not to stay in the same position for a long time if this causes you pain
  • Depending on where things are in your sex life, go back to basics with date nights, flirting, kisses, holding hands, cuddles…
  • Muscle relaxants, a warm bath, massage, a glass of wine might all aid things by relaxing you and your muscles
  • If something doesn’t feel good, say something.  Don’t assume your groans are conveying the right message! Maybe even have a safe word or be clear that stop means stop right away.
  • Use Google, look up good sex positions for ehlers danlos or whatever you have
  • edited to add, lube, lube is good

None of this is going to be a quick and easy solution unfortunately…

I’d really like to hear from you if you’ve got any more tips.

I’d also suggest popping over to The Hippy Geek who has joined two beds together so she can have an adjustable bed and still share a bed with her husband which I think is awesome*!

*be in no doubt here, as awesome as the idea is, if you ever end up in a relationship with me, you’ll be in the spare room! I love my double bed and all it’s very specifically arranged accessories and I’m not giving up my middle of the night internet for anyone!