Jane, Richard Butchins PA
John Clugston, Hereward College
Shital Shah, Arthritis Care
Tracey Wood, Leonard Cheshire Foundation
Eleni Stephani, Outsiders helpline Eliot Lamb, Independent Living Solutions
Els Payne, Outsiders
Terence Woon, Industrial Designer MSc Student
Mary Foster, Sense
Zoe Grace Cozens, Leapfrog Training
Alex Cowan, Disability Consultant
Lorna Couldrick (minutes) University of Brighton
Lionel Roth, Outsiders trustee
Katie Wiltshier (OT and minutes secretary); Linda Lewis (ASBAH); Lawrence Shapiro; Sue Ronaldson; Zak Hussain (LC Disability); Sue Nathan (Outsiders); Johnny Coleman (Leonard Cheshire); Torie Appleyard; Victoria McKenzie; Frank Allinson; Kate Wilkinson (Chaseley Trust); Melani Halacre (Spokz); Alan Taylor (Outsiders); Jayne Horton (WDP); Mary Clegg (Beecourse); Sue Newsome (Shakti Tantra); Dominic Webb, Rebecca Lowrie; Claire Lewis (Active Assistance). Helena Barrow was also unable to attend due to a car accident. Tuppy therefore acted as chair.
Everyone introduced themselves and their work. Newcomer Terence Woon told of his plans to create something that will help spinal injured people increase their sexual pleasure and have it exhibited at the Royal College of Art. Richard Butchins spoke about the TV documentary he plans to make on the subject of sex and disability. Mary Foster noted the process Sense is going through to update its policy on sex and disability. All spoke about what they valued, or wished to get from, SH&DA meetings. The following points were noted: –
How people apply their knowledge to disabled clients
To see what everyone else is doing
Ideas and thoughts on how to change attitudes
To get resources and see how others work
Pushing my own knowledge and attitude boundaries
Learning about experience and knowledge
Matters arising from the minutes
The minutes had been circulated. No matters were raised
Presentation by Zoe Grace Cozens
Zoe Grace introduced herself (and her business: Leapfrog training) with a summary of the range of work in Norfolk and Hertfordshire, that she has been involved in. This includes: –
Writing service wide sexual health policies in Norfolk for the learning disability service. New policies have since been commissioned for older peoples services (draft now in consultation stage); physical disability and sensory impairment & mental health services)
Providing training / courses for managers and staff (in both health and social care) about supporting learning disabled service users with sexual issues. This is linked to a competency framework based on the Norfolk service policy. Training for staff in Hertfordshire linked to their policy. All training is open to the private, voluntary and independent (PVI) sector as well as local authority staff.
Self esteem courses for service users, using the arts
She talked through two of her trainings: Physicality, sensuality & sexuality: supporting the personal and sexual relationships of people with learning disabilities, and Loving yourself and liking life ~ Self esteem using the arts. She described how she used multimedia (music, smell, beautiful sensuous fabrics for the first & added masks, drama, voicework etc for the second) to enable people to be centred and value who they are, both as staff and recipients of services. Zoe Grace highlighted the interrelationship of self esteem, sexuality and safeguarding vulnerable people. Two aspects in particular, she stressed, made people with learning disabilities vulnerable to abuse. The first was the objectification of the body and the second was learned compliance. People with learning disabilities, she said, learn to be compliant. If not, they are often labelled as having challenging behaviour. Compliance involves managing their feelings to present as happy and cooperative. Increasing their self esteem and knowledge about their bodies, their sexuality and their feelings, helps them to be more discerning about relationships and make informed choices. This helps to protect them. Service users’ experience and expectations of relationships are frequently very narrow. Their role models are usually the staff surrounding them. However these people present a sanitized image of relationships due to appropriately professional behaviour at work and a former reluctance to talk about the inherent challenges in relationships.
Zoe Grace also got the SH&DA group to try out a couple of staff exercises. In the first, working in pairs, we discussed one thing about my personality / sexuality which enriches my relationships and one thing about my personality / sexuality which makes my relationships more difficult. It was interesting to see how quickly this could get to the heart of attitudes and emotions on the subject. Another exercise described, was body mapping. Coloured sticky notes were written out and strategically stuck to a paper sheet which had a life sized outline of a person on it. The notes addressed the: –
greatest surprise about my body
greatest mystery about my body
greatest pleasure about my body
greatest disappointment about my body
Zoe Grace also presented a wide range of resource material and is happy to be emailed for copies if you need more information. She is planning to start running Training the Trainers courses and will come to any area where a minimum of 8 staff can participate. Contact her on firstname.lastname@example.org for details.
Report on the Venus Fair in Berlin
This was attended by Tuppy who reported there was nothing astoundingly new in the way of sex toys for disabled people. She returned with a beautiful and handy range for Spokz to sell. She said Spokz are presently getting their website together and this should become a useful resource for finding suitable sex toys for people with physical impairments. She hopes it will encourage more discussion so that new toys can be invented and manufactured.
Report on the: Sexual development and empowerment workshop
This was convened by the Institute of Development Studies (Sussex University). It was held over 3 days in December and involved an invited international group. There was representation from Europe, South America, Africa, and Asia. Delegates included health practitioners; sex workers; feminists; scholars; publishers; etc.
Lorna described her surprise to be involved as her work is not centred on women. It became apparent however that the workshop was applicable across many marginalised groups including disabled people (also LGBT, HIV+ sex workers etc). The focus of the workshop was about challenging the negative approach presently taken to international development and sexual health. This tends to focus on: women as victims; coercion and violence; unwanted pregnancy, sexual transmitted disease etc. The workshop considered the concept of exploring pleasure, well-being and positive sexuality, especially the right to sexual pleasure, as a way of empowering marginalised and minority groups. Beyond the advantages for individuals, this may also help to instigate organisational and political change. For those interested to know more, Lorna will post a fuller report on the SH&DA website.
Review of the SH&DA conference
A conference report is available on the SH&DA website. As Sue Newsome was unable to attend today’s meeting she sent her reflections on the conference: –
“Before the event, it felt a little daunting – the idea of doing a live demonstration in front of a very mixed audience. After the event, it felt like I had been part of a truly amazing achievement that had successfully brought together people with disabilities, professionals and academics all in the prestigious setting of the Royal Society of Medicine. Any event takes a huge amount of organising but to stage this conference with strippers, sex workers, wheelchair users, intellectuals, activists etc etc all on the same stage & to have the audience shocked, excited, challenged, inspired and moved was a phenomenal task that Tuppy pulled off. I hope that we can all draw & build on the experience.”
From those present today, the overall sense was that this had been a ground breaking conference that was very well received. Financially costs appear to have broken even meaning that there was neither a loss nor profit made by Outsiders. The analysis of feedback sheets indicated that: 90% said it was good or very good in terms of relevance; and 93% said it was good or very good in meeting the stated aims and objectives. Lorna will write to Lauren Wynn thanking the RSM and offering SH&DA support for any future RSM events. Lorna’s highlight was the chair of the sexual health section of the RSM rushing down the aisle calling to Solitaire “to keep the knickers on!”
It was agreed that there would be no conference this year, and we might hold one every two years. Tuppy is on the look-out for new venues.
Workshops on the future of SH&DA
Working in three smaller groups, thoughts for the future of SH&DA were discussed. Ideas varied and not all groups agreed. The ideas are listed below and it would be useful to return to these and discuss them further in a future meeting.
Membership and meetings
Charging for membership: advantages – being able to pay for some administrative time and increase credibility; disadvantages – may discourage membership of the very people who need our support.
No terms of membership – nice to know you can come when you want, i.e. if something of interest comes up, although if you do come regularly you find something of value each time.
Always valuable for meeting people even in a smaller group. In fact the meeting can be more productive when the group is smaller. Therefore it is not necessary to worry about numbers.
Charging a cancellation fee for non attendees: some people say they are coming along but don’t show up and don’t cancel, which is very disrespectful. (Other organisations provide free meetings but charge for ‘no-shows’).
Monthly mailing or email forum for members.
Supporting each other more, so that members work in partnership.
Future possible ideas / objectives
Funding for a co-ordinator / secretary / website manager.
Developing sponsorship, credibility, funding & membership.
Charging for the policies which are currently free to download from the website. This way SH&DA would gain both funds and credibility.
Continuing to focus on policies, but more on the policies in practice. So more sharing of experiences about the success, failures, challenges of operating the policies in the working environment, e.g. ways of negotiating resistance etc.
Developing / updating leaflets: seeking sponsorship to fund these
Write a leaflet on the right to sexual pleasure empowering disabled people to ask for help when needed e.g. questions they can ask etc.
Developing educators / trainers / training programmes
Convert the information to other formats such as sign-along or spoken.
More campaigning to, and education of, other professionals, politicians and organisations about the right of disabled people to sexual pleasure / wellbeing.
Increase the links between Outsiders, SH&DA, and TLC websites
Creating a website bursting with information for all, e.g. professionals, families and the person with the disability. For instance, guidelines for working with families which schools, colleges and charities could use.
Writing a book based on the presentations made to SH&DA meetings
Date and time of next meeting
Friday 8th October 11 a.m. until 4 p.m. Suggested topics for the next meeting are: fatigue management and DeafBlind sensory impairments
Any other business
The group wanted to record their thanks and praise for all Katie Wiltshier’s hard work undertaken on behalf of SH&DA. This includes running the group in a democratic, straight-forward and friendly way, maintaining the circulation lists, organising the agenda, taking the minutes etc. Her work is undertaken with good humour and great efficiency. Thank you, Katie.
Recent books which may be of interest include:
Doezma Jo (2010) Sex slaves & discourse masters: the construction of trafficking in women. Zed books. (Deals with sex trafficking)
Sense Scotland (2008) Batteries not included, will soon be available as a PDF file to download from Common Knowledge www.ckglasgow.org.uk
Films which may be of interest
Richard Butchers has a film entitled The Last American Freak Show showing at the Brighton Film Festival on Tuesday 23 March 2010. It is a film about disabled people who choose to be part of a Carnivalesque show that travels America.