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.
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
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…