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.