Our conference which took place on Friday 13th November 2009 at the Royal Society of Medicine, run jointly by the RSM and SHADA. It attracted a whole page in The Times.
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Disability: Sex, relationships and pleasure
A joint meeting organised by the Sexuality
& Sexual Health Section and SHADA
13 November 2009
9.30 am Registration, tea and coffee
Chair: Dr Sris Allen,
Past President of the Sexuality and Sexual Health Section and Helena
Barrow, Registered Manager, The Chaseley Trust, Eastbourne
10.00 am Welcome and introduction
Dr Sris Allen, Past President of the Sexuality and Sexual Health Section
Dave Thompson MBE, Founder and Chair of Warrington Disability Partnership
Setting the historical context
Simon Parritt, Chartered Counselling Psychologist
A registered care home manager’s experience
Helena Barrow, Registered Manager, The Chaseley Trust, Eastbourne
A doctor’s experience in learning disabilities
Dr Daniel Atkinson
11.15 am Tea and coffee break
11.45 am First set of workshops
Dr Belinda Brooks-Gordon, Reader in Psychology and Social Policy,
Birkbeck College, Claire De Than, Director, LLB,
The City Law School, and Mary Foster,
MSI Education Consultant at Sense
Dr Graham Jowett, Director of Education, Treloar College
New model of practice for staff In disability services
Lorna Couldrick, Senior Lecturer School of Health Professions, University
12.30 pm Repetition of workshops
1.15 pm Lunch and exhibition
Chair: Dr Tuppy Owens, Director of The Outsiders Trust
2.00 pm What they never taught me at the spinal injuries unit: The multi sensory experience
Dominic Webb and Sue Newsome
“Dancing in the dark”
Solitaire, Jimmy and Jonathan Lucia-Wright
2.30 pm Sex workers as enablers
Sue Newsome and Thierry Schaffauser
Plenary – Narratives supporting change
Chair: Dr Petra Boynton,
Lecturer in International Health Services Research, Division of Open
Learning, University College London
2.50 pm Introduction to EBP
Dr Petra Boynton, Lecturer in International Health Services Research, Division
of Open Learning, University College London
Disabled people speak about their lives and what would help
Lorna Couldrick, Michelle Donald, John Gillett, James Warham
3.45 pm Tea and coffee
Chair: Helena Barrow, Registered Manager, The Chaseley Trust, Eastbourne taking
4.00 pm Completion of evaluation forms and a few words about Outsiders, the Sex and Disability Helpline and SHADA
Dr Tuppy Owens
4.30 pm Close of meeting
The pioneers who run the Sexual Health and Disability Alliance see the need to respect the sexuality of their disabled clients. They are frustrated that so many other health care professionals do not share their concerns, playing lip service to good practice on disabled people’s needs.
SHADA designed a conference to convert the intrepid. Recognising the fact that it is very difficult for most medical and care staff to address their clients sexual problems, a programme was created to present a new model to help them, policies to aim for, and clarification on the law. Sticky issues were discussed, for example how the Home Office won’t listen to Sense, the charity for deaf-blind people who find their clients damaging themselves with dangerous masturbation techniques, yet they are not legally physically able to teach them otherwise.
The afternoon changed in tone, with two remarkable performances. Tantric sex worker, Sue Newsome stood beside quadriplegic Dominic Webb, tenderly making love to his head. Dominic can neither reach up to touch his head, nor feel anything anywhere else on his body. Since his motor accident 15 years ago, until Sue started working with him, Dominic had never felt any pleasurable sensations.
The other performance was an elegant striptease by artiste Solitaire, for Jimmy, a deaf-blind man. As well as being aware of her aroma and the silkiness of her long hair, Jimmy “heard” what was going on in front of him via finger language provided by a PA, jj, who was also sharing his commentary with the audience. Near the end, Dr Sris Allan, President of Sexual Health Section at the RSM thought that the removal of knickers was a step too far, so Solitaire slipped them on again, to which jj said, “knickers going on again, tell ya why later!”.
The audience fell about laughing. They had been moved to tears. Afterwards, discussions were both both inspired and motivated, expressing the view that talking is one thing but seeing is quite another. Dominic spoke about how important this work is for him, and Sue told the delegates, “This is all about Dominic, I am just the facilitator.”
There was not enough time to examine all the sex toys collected together for disabled people, there were not enough copies of the SHADA policy guidelines on sex and disability. Delegates from a wide range of backgrounds, including Scope, Leonard Cheshire and Sense were coming up to Dr Tuppy Owens of Outsiders, who was the driving force behind the conference, in the hope that they can work together in the future. The members of the Law Panel plan to work together too, to fight the laws that make many ideal strategies illegal.
This was one conference that will really, hopefully, make the world a better place for people with disabilities. It was listed as one of the Best Sex and Science Stories on the Dr Petra blog – see http://www.drpetra.co.uk/blog/the-best-and-worst-sex-and-science-stories-of-2009/
Sex and Disability Helpline 0707 499 3527
This Article by Laura Skorupa, Information Officer at the The British Polio Fellowship goes into more detail:
Disability: sex, relationships and pleasure
A joint meeting organised by the Sexuality and Sexual Health section of the Royal Society of Medicine and SHADA (Sexual Health and Disability Alliance)
Friday 13 November 2009
This event was held at the Royal Society of Medicine, London, with delegates representing the disability, health, social care, psychosexual and education fields, including disability charities, care services, service user groups and sex workers.
The conference was the first of its kind to be organised in the UK, with delegates from all over the country and from overseas.
As well as speakers, presentations and workshops, there was an exhibition of service providers, relevant organisations and a selection of sex toys and other equipment designed specifically for disabled people.
Founder and Chair of Warrington Disability Partnership, Dave Thompson, with his opening address, set the tone for the day, with its mixture of hard-hitting facts, honesty and humour. He gave a frank account of his spinal injury, the subsequent effect on his sex life and his treatment by medical staff. He encountered staff lacking in awareness and sensitivity and his sex life was never addressed.
Dave also gave other examples of case studies where the medical profession’s attitudes and lack of support was apparent. “How can we help people with disabilities if the staff don’t know anything?” he asked.
Simon Parritt, Chartered Counselling Psychologist and resident sex and relationship expert for Disability Now magazine talked about the historical and cultural perspectives that have shaped current attitudes to disability and sexuality, but he did emphasise that while attitudes are changing, there is still a long way to go, particularly as attitudes towards sex and disability vary greatly across generations and cultures.
Helena Barrow, manager of the Chasely Trust in Eastbourne, talked about why she joined SHADA. While working as a staff nurse in geriatric care, patient sexuality and sexual behaviour were regarded as “a bit of a giggle” amongst staff and sex and relationship issues were not addressed.
It was while working in a nursing home for young people, her eyes were really opened to the problems and prejudices. A patient was in a persistent vegetative state, but was able to respond to his wife. His wife requested that she could lie naked in bed next to him, and staff discovering the two of them were disgusted. Helena decided that in order to enable her residents to have sexual lives within a supportive environment, she needed to change the attitudes of her staff, and this came about through training and consultation, with help in particular from Dr Tuppy Owens, from the Outsiders Trust and SHADA.
Delegates had the opportunity to attend two out of three workshops: The Law, Policy Development and New model of practice for staff in disability services.
Lorna Couldrick, Senor Lecturer at the School of Health Professions at the University of Brighton, led the latter workshop. With an OT background, her research into patient experiences and work with community disability teams found that in spinal injury units, some sexual health support was offered, but for other patients such as Parkinsons Disease and stroke, the issues were not addressed. The timing of any help offered was critical- one patient had said, “At the pain of trauma, it was the first thing on my mind.” Another said, “Sod being able to dress- I need to know if I can have sex.” The implication for many was, “You’re disabled now; it doesn’t matter any more.” Sex was seen in many cases as an “optional extra”, rather than a basic human right, and “surely they’ve more important priorities than sex.” There was also a lack of focus on the emotional, as well as the mechanical issues.
She summarised with the following points:
Every service user who has sexual concerns should have access to information, help and treatment.
Every service user is a sexual being.
There should be sensitive, permission giving strategies- not impertinent questions.
The problem or concern should be thoroughly explored.
Issues should be addressed where they fit within the team’s expertise and boundaries.
Patients should be referred on where necessary.
The afternoon’s talks and presentations were focused chiefly on disabled peoples’ experiences and the way forward.
A live demonstration of multisensory sensual massage, where tantric sex worker and counsellor Sue Newsome worked with Dominic Webb, who is a tetraplegic, was both fascinating and moving. Dominic had been keen to explore the possibility of receiving a sensual head massage and he said that it had been a highly erotic experience, which was both relaxing and long lasting. Sue explained that it was very important to build a trusting relationship and a safe environment and that Dominic is in control.
Sue talked about her “hugely challenging, but very rewarding” work, the importance of listening to her disabled clients and working with them, not for them. She said that disabled people need to be aware of what it is they would like to experience and to have the courage to ask for what they want within relationships.
Another demonstration of an erotic dance for a deafblind man, with commentary by his support worker, was enlightening and extremely moving.
In her lecture about evidence-based practice (EBP), Dr Petra Boynton, Lecturer in International Health Services Research at University College London, said, “We want to encourage creative thinking. We need to be positive, but at the pace and level of those we’re working with.” She summarised with the following points:
There is a lack of research on sex and relationships and disability.
There is concern at the lack of policies for use within work.
There is uncertainty over what staff can and cannot do.
Good will doesn’t always mean good practice.
We need to underpin practice with critically evalued evidence.
Towards the end of the afternoon, three disabled people talked frankly about their experiences of sex and relationships and the challenges they had faced. They particularly emphasised the psychological effects of sexual adjustment and its effect on relationships. Without sufficient support, relationships can suffer. It can be difficult for partners- switching roles between care provider and lover can be particularly challenging.
”As individuals, we need to make sure that people’s human rights are protected”, said John Gillett, a disability trainer, who is paraplegic after a spinal injury.
A the end of the day there was time for a question and answer session with all speakers and Dr Tuppy Owens gave a short talk about her work with Outsiders and SHADA. It had been a hugely successful day, and hopefully the beginning of radical change. “People are starting to come together,” said Dave Thompson, “the way forward is communication, communication, communication.”
Photographs by Ashley