Friday, 31 May 2013

The problem of sexuality policies for disabled people

There is generally low levels of training among staff in services for disabled people around sexuality, and staff’s own attitudes about sexuality can impact massively on the people they support.
Even where sexuality policies exist, these can reveal a lot about the  power assumptions that exist within disability services. An example of this is the sexuality policy written for a residential service for people with spinal cord injuries published very recently by the Spinal Cord Injury of Association of British Columbia.
I'm posting an image from that policy; a decision making tree for staff, giving them guidance on when they should assist people who they support with making love (and when they should not).

There's no doubt in my mind that this policy will have been welcomed both by staff and residents at the service it was written for. The policy prohibits staff from making value judgements about same-sex or extra-marital sex and establishes the circumstances where they may assist people to have sex who otherwise would not be able to. However, while the policy shares materials designed to assist staff in these decisions, no such support or guidance around sexual decision making is contained in the policy for the residents themselves.
Where the person lacks the capacity to consent to sex, staff are required to decide whether or not engaging in a sexual act is in the person’s best interests. This seems an incredibly difficult question to answer for anybody about any particular sexual act. Do non-disabled people ask themselves "will this sexual act be in my own best interests?" before every sexual encounter in their lives?

The document is written by medical, ethical and legal experts. There is no evidence that anyone with spinal injuries was involved or consulted when writing the guidance.
The final outcomes of pathways through the decision tree require that staff must ‘prohibit’ or ‘allow’ particular sexual acts; emphatic words revealing the huge, some would say inordinate, power invested in staff, including the power in one pathway to over-rule the decisions of a person with the capacity to make decisions, where the staff person decides that the risk of harm is unreasonable, even when the person themselves is prepared to accept that risk.

Most people will welcome that organisations like the BC Spinal Cord Injury Association are trying to write guidance around issues of sexuality in the lives of disabled people. This at least challenges the prevailing avoidance of such issues, but what the policy also reveals is the immense power over people's lives that continues to be invested in support staff.

I feel it's fair to ask whether it is acceptable to provide guidance that instructs staff to 'prohibit' the expression of sexuality, and whether an issue as complex and personal as sexuality can be reduced to a simple flowchart.
How would this sexuality policy have been different if it had been co-produced making sure that the residents of this service themselves had been fully involved in writing it using a process like Working Together for Change?

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