Report on the Fourth Meeting and Details of Next Meeting
Sexual Health And Disability Alliance
BCM Lovely,
London.
WC1N 3XX.
Tel: 07770 884 985.
Web: www.outsiders.org.uk/shada.
Email: ShadaSecretary@outsiders.org.uk.
4th Meeting
Friday 30th March at Room H, Scope, Market Road, London N7
Minutes
Thursday November 22nd, London. Title: Sexual Freedom of Disabled People and the Law. If anyone is in contact with someone specialising in this area who may like to present at our next meeting, please let Katie and/or Tuppy know.
All present introduced themselves and their reasons for attending.
The Chaseley Trust is a nursing home for 55 disabled people aged 18 years and upwards, with an average age of 40. Residents present mainly with neurological problems and a few have learning difficulties. No-one has been assessed under the new Mental Capacity Act as not having capacity, therefore all residents are deemed to have capacity until such time as assessed otherwise. Chaseley has a day centre as well as a bar and pool table. They also have their own pool team.
Helena has been working hard to enable her residents to have a full life including finding ways to allow them to have a sex life. However, this endeavour has been difficult due to both legal and practical problems.
Chaseley used to be a home for ex-servicemen, run by the Ministry of Defence. At this time, sex was enabled for the residents including provision of sex workers and condoms. However, once civilians were brought in, policies were tightened around this.
Helena spoke about the practical difficulties of finding a profiling double bed suitable for a married couple in the home. A solution was eventually found by joining two profiling beds together with further adaptations. This situation highlights the wider issue of the lack of education regarding enabling sexual expression for disabled people in this country.
Currently how each resident expresses themselves sexually is addressed by how they look or whether they are able to have children, etc. This is the same assessment carried out across health professions and somewhat misses the wider issues of sexual expression, often due to either confusion and/or embarrassment. Chaseley are looking into having a leaflet with the admission pack addressing sex and expression but cannot take this forward until there is something concrete to write in it i.e. we can do this for you but not that.
Helen's main concern is how to enable the residents to have an active sex life if they so choose, while staying within the law. The problems with this include grey areas within the law regarding what is legal and what is not, as well as the fact that residents may change their minds as to what is acceptable and what is not. This highlights the need to protect both staff and residents. Discussion with solicitors regarding how Chaseley could be protected if something happens, have highlighted that at present there is no answer as no case like this has ever been tried in court.
There may also be grey areas within the law around use of sex workers. Although Helena has access to sex workers, she cannot call them on behalf of a resident as this would possibly be illegal. However, some residents are not able to speak on the phone or visit a sex worker so this presents a problem.
Policies have been developed from those at the Disability Association regarding enabling. These state that you can only enable a sexual act, you cannot be involved. Staff at Chaseley are supported regarding boundaries. Staff also work in pairs to cover care workers.
On a positive note, Helena's Psychosocial Care Manager has been asked to find out whether two local lap/pole dancing clubs have disabled access. If they do not, Helena and team will pursue the opportunity for these dancers to come to Chaseley. This was a request from one of the residents during his 6-monthly Multi-disciplinary Review meeting.
Discussions from this presentation covered the following:
The Access to Health Project covers the following areas:
Sex and relationship education is offered both on a 1:1 basis for specific problems and also in group settings. People with learning difficulties encounter unique problems regarding sex and relationships including social isolation and limited opportunities for sexual expression, as well as sexual expression not being encouraged. Jo and Adam reported a better response from carers recently but there are still negative attitudes. As a result of social isolation, people with learning disabilities sometimes learn about life through soap operas on TV which results in views such as everyone who is married then will have an extra-marital affair. To combat this, Adam and Jo work with service users to identify relationships that can be supportive and those that are not. Education is also given regarding reasonable rates for services such as sex workers and lap dancers to guard against financial abuse from service providers.
Adam reported on the men's group he ran at the local day centre. The group consisted of 8 men, aged 30-65 years old, who were mostly older men. The group included 4 men who were non-verbal. The group covered body awareness, sexual health and reproduction as well as practical skills such as putting condoms on bananas.
Jo reported on women's groups and a men's group that she had been involved with. Some of the women's groups were based on sex and relationships, others covered women's health issues including cervical and breast screening. The men's group had been for men with mild learning difficulties and covered information about both female and male sexual health and reproduction. Many commented that this was the first time anyone had covered this information.
Jo and Adam also talked about Stars in the Sky, a dating agency set up for people with learning disabilities in Hackney that is very successful. The service is run by two women who themselves have learning difficulties. Simone van Luytman from this organisation had unfortunately been unable to attend this meeting. Stars in the Sky organise trips out for people to go out in groups, as well as offering supported dates. They also run women's nights and men's nights. They also go out to different events such as speed dating and the Wild Bunch (www.wildbunchclubs.com).
Adam voiced concern about the Care Workers Offences and Sexual Offences Act which make it illegal for care workers to have sexual relationships with clients. Adam has written to the Home Office about the lack of exemption for people with learning difficulties in this Act, but as yet has had no response.
Discussion from this presentation regarding:
All interested SHADA members to review this document and make comment on whether they agree with it or not. If the consensus is that these guidelines should be changed, we need to do something about it.
Respond is a nationwide helpline based in Euston for people with learning difficulties. They also provide counselling for people with learning disabilities regarding abuse and trauma. The service is holisitic, serving both victims and offenders in order to break the cycle of abuse.
The Respond Action Group meets monthly and looks at issues such as bullying and accessible web pages. The group also lobbies Parliament, does outreach work and publishes articles.
William reported on his visit to the Houses of Parliament where he spoke about abuse and what should be done. He stated that people with learning difficulties should be listened to rather than ignored or told to keep quiet as has been the case in the past.
William, Tamanna and Sylvia then told of their personal experiences around relationships.
Lorna reported on the MS Trust conference. She ran a workshop with Helena on sex and MS, covering three scenarios. Health care professionals included OT's, RGN's and MS nurses, who all found it difficult to think how they would deal with these scenarios. Dr. Fred Foley, a leading authority on sexual issues in Multiple Sclerosis attended, and praised, the workshop.
The MS Trust is running a sexual issues chatroom on their website on Tuesday 24th April 10 a.m. -7 p.m. Visit www.mstrust.org.uk, Phone: 01462 476700. Email: info@mstrust.org.uk. This chatroom celebrates the new book "Sexuality and Intimacy for Women with MS by Nicki Ward.
Lorna had heard via Dominic Davies of an art exhibition (currently in Australia) by Belinda Mason-Lovering. It can be viewed on line at www.intimate-encounters.com.au/start.html. (Click on 'exhibition' then 'sexuality and disability'). The images are a collaboration between the participant and the artist to challenge existing views on disability and sexuality.
Lorna and Katie represented SHADA at the Jane Wadsworth Sexual Function Clinic brainstorming meeting. We were invited by Dr. David Goldmeier, clinical lead at Jane Wadsworth. It was an interesting day and our presentation was well received, provoking discussion about the lack of accessibility to services for people with disabilities.
There is a Canadian film called "Want" produced by a disabled lesbian that is worth watching, and is nominated for an Erotic Award as is "Equal Opportunities" by Mathilde Madden about a female devotee of disabled men (Virgin Books). Outsiders also had nominated www.fitnessunarmed.com from an armless model and SWAP by a deaf singer. Lee Kemp, star of the Crippendales (also nominated), recently on channel 4 will be performing at the showcase (www.erotic-awards.co.uk). Mouthing off, a tetraplegic man's praise of kissing from an Irish production company www.venom.ie and Amora London the sexual education show at the Trocadero Picadilly Circus.
The Sexual Freedom Conference is on April 21st - 2 p.m. - 5.30 p.m., Toynbee Hall - all welcome. See www.outsiders.org.uk for details.
The British Association of Sex and Relationship Therapists Conference is on May 12th and 13th at the University of Warwick, Coventry (details from www.basrt.org.uk).
Youthnet are doing a survey on young people's views about sex - details of this have been circulated to all members. If you work with young people, please pass the details on to them, or email Fiona.parkin@youthnet.org for more details. They have had 22 responses so far.
Helena kindly offered the Chaseley Trust in Eastbourne as a venue for the next summer meeting.
Avril from Scope was thanked for organising a room for us, especially at such short notice.