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?

Arthur and Merlin discuss questions.

"Why do you say questions hold more truth than answers Merlin?" asked Arthur, while he chewed on the last of his porridge.

"Yesterday's answers are different from today's boy" said the wizard, "and tomorrows will be different again."

"Questions can be like butterflies you see Arty. They can land on an answer for a while, and take all the nectar they can out of it. Or sometimes they're like rabbits that have got caught in a trap. It suits someone to hold them there."

Arthur looked at the old man puzzled.

"Do you mean that every question has someone whose voice hasn't been heard answering it yet, someone with another way of seeing it, someone whose answers might release the rabbit?"

"Is that an answer or a question lad?"

Arthur picked up a piece of straw and threw it into the fire. He watched as it twisted in the flames, then burned away into nothing.

The Argonauts

The Argonauts went out to sail in the Argo, their ship.

While they were at away travelling across far oceans, they had to change every single plank, every nail, every thread in every sail of the Argo.

Eventually, after many adventures, their ship, the Argo brought them back home.

"There is a vitality, a life force an energy, a quickening that is translated through you into action, and because there is only one of you in all time, this expression is unique" Mohandas K. Gandhi

Quote from Adrian Belew

Bits and Bobs

There's been a few interesting stories recently that you may well have missed. I'm going to highlight two or three of them here:

Firstly, my copy of 'Community Living' dropped through my letterbox today. It's packed full of useful information on current benefit changes, such as the Personal Independence Payment, as well as great information from Belinda Schwehr on the law around social care and disability.

HISTORY

One article from Community Living that I found really interesting was a review by David O'Driscoll of a website that English Heritage have set up covering Disability History 1050 - Present Day. The pages are brimming with intriguing information about the lives of disabled people in the past, such as the 'natural fools' in the Tudor court who were appreciated for their humour and honesty, and facts, such as the first wedding ever conducted in sign language was held in 1618. It also shows how people have resisted institutionalisation right since the earliest days, such as the Leper Colony in West Somerton that rose in revolt in 1292.

Parallels to the present day include the unforeseen consequences of radical changes to the provision of health and social care that happened because of Henry VIII's dissolution of the monasteries. Many of the religious institutions that had been mainstays of the lives of sick and disabled people were destroyed leaving people forced to beg in the streets. The state's eventual reaction to this was to establish new hospitals and institutions, though many disabled people lived long and productive lives in the community. The site touches on the debate about separation or inclusion that continues today (and is a key theme of this blog).

The Union of the Physically Impaired Against Segregation was an early disability rights group.
© Disability Archive UK, Centre for Disability Studies, Leeds University

PHOTOGRAPHY

If you're lucky enough to be in Edinburgh at the moment there's a really interesting looking exhibition of the work of photographer Graham Miller called 6 percent Downs Syndrome.

The exhibition focusses on the experiences of people with Downs Syndrome and their families, and includes recorded testimony as well as photographs. It gets its' title from the fact that of all the pregnancies where Downs Syndrome is determined before birth, 92% are terminated, and only 6% are delivered.

LONELINESS

This blog has covered the issues of loneliness and isolation, and seeks ways that our communities can help people overcome this. Vanessa Barford's article on how society creates loneliness is worth a read.

HEALTHCARE

More and more medical professionals are reaching the conclusion that much of the treatment and care currently provided in hospital could be provided in people's own homes or in local clinics. People like Dr Michael Dixon think that 50% of what's currently done in hospitals could be done in the community, with better outcomes. I'd suggest that for this to happen successfully, we'll need to develop person centred attitudes and skills among medical staff, and also find ways to make local communities more connected and confident to become welcoming and supportive places for all the people whose conditions are being treated there. We'll need to think carefully about how to deliver this, so that things like 'virtual wards' in the community don't trap and isolate people in their own homes.

SELF-ADVOCACY

The death of Mabel Cooper was a sad loss to the self advocacy movement. Tom Shakespeare marked her passing with an obituary in 'Our Statures Touch The Skies", While Dorothy Atkinson wrote an obituary for her in the Guardian. You can hear her voice on this video from the Forgotten Citizens Conference. You can also hear more about her on BBC Radio 4's 'Last Words' programme, which should be available up to the end of April.

 

Shared Walk

There are hundreds of ways of helping people overcome social isolation. Here's one very easy way to keep people in touch with the outside world, to connect and take notice.

Shirley Ayres wrote the original article, that you can find on her blog "Connecting Social Care and Social Media" 

Being solated and housebound can have a serious impact on a person’s health, well-being and quality of life. A new internet and smartphone service is helping housebound individuals to explore the outside world with a friend, relative, carer, or volunteer. The aim of Shared Walk is to help people stay in touch through sharing access to photographs and short videos that can be easily and spontaneously transmitted from a customised mobile phone app.
In particular, it allows anyone with a smartphone to capture and send narrated videos to a housebound partner with access to personal space on the Shared Walk website. It is hoped that this service will be particularly valuable for relatively isolated individuals with access to the website. It will enable them to keep in touch with any contact  (or group of contacts) who can use a smartphone app. It is secure, accessible and user friendly to the novice – and it’s free to use.

The mobile member of this partnership typically captures brief video episodes of their daily lives with the  phone app and instantly transmits them to ‘domestic’ partners to view and, if they like. comment upon through a simple webpage. The video might be outward looking views of a “walk” (although it might even be the view from a “journey” rather than a walk – say the view from a bicycle or car). Housebound participants can also subscribe to “stories” in which a mobile individual posts intermittent video clips that capture something of their everyday lives –  this could range from a student,someone in business, a member of the clergy or a teacher.

“We were motivated by the idea that vivid and personal visual material was a powerful resource to animate and sustain relationships, particularly among those increasingly disconnected from an active social world.”  Professor Charles Crook leading the team developing Shared Walk

The research team at the University of Nottingham (with funding from the Nominet Trust) have been looking at how everyday technology can help those who are socially and physically isolated feel more connected with their families, friends and community.

Shared Walk are partnering with charities working with housebound individuals to promote the service and encourage people to sign up. Have a look at the introductory video and do email  Professor Crook charles.crook@nottingham.ac.uk or contact Charles  via Twitter if you would like to be involved in this innovative project.