Report on 14th Meeting
ATTENDANCE LIST (with email addresses):
Dr Tuppy Owens (convenor, scribe and speaker) Outsiders
Adam Thomas (chair) – Elfrida Society
Katie Wiltshier (secretary) Occupational therapist and psychosexual therapist
Susan Quilliam – relationship psychologist/author (speaker) –
Alex Cowan — disability consultant (speaker)
Rebecca Lowrie – Trustee of Disability Foundation, sex worker/coach –
Sally Lee – Social worker/researcher
Anji Page – Sense
Gill Leno – Brook
Tim Gilbert – Independent Living Solutions
Sue Newsome – Trainee Sex Therapist
Paul Casey – FPA
Shahid Shah – Outsiders
Helen Dunman – Chailey Heritage School
Anna Fillingham – Cheshire and Merseyside Sexual Health Network
Rodney Hedley – Outsiders Trustee
Maud Young – Outsiders
Alison Hopkins – psychologist
Belinda Brooks-Gordon – academic/campaigner
- Miguel Tudela de la Fuente, Jayne Horton, Eleni Stephani, Paul Amey, Helena Barrow, Eliot Lamb, Carolyn Westwood, Louisa Jennings, Jon Clugston, Sarah Robinson, Michelle Donald, Els Payne, Lorna Couldrick, Owen Hughes, Paul Amey, Greg Sams, Mandi Peers, Carol Milne, Roshan Nair,
ACTION (including ongoing from last meeting):
- Sexual Respect Tool kit team to report back on progress at next meeting.
- Alex to report back on her peer support project at next meeting.
- Need volunteers to write up scenarios involving personal assistants supporting disabled people with sexual expression including use of sex workers. Could ask people at Night of the Senses.
- Everyone to promote SHADA, Outsiders and TLC to increase awareness and membership.
Next Meeting Friday 28th September
- Introductions All present introduced themselves and their reasons for attending. These included:
- Cross pollination and networking
- Publicity wording
- Increasing the tool kit
- Inspiration, staying connected
- Learn about struggles and achievements
- Relief after isolation
- Sense has a new policy mentioning SHADA
- Working together to common aim
- Developing practice development project
- 2. Matters arising from the minutes
Tuppy reported back on the ‘Beyond Impairment’ project and progress made following small group discussions at last meeting.
- Aspergers: Tuppy wrote a 4 page document regarding aspergers. She gave it out to people but no-one gave her feedback. However one man with Aspergers has since found a partner and said the document was helpful.
- Deafblind: Issues around touch and what is appropriate were highlighted. Also potential for using different senses such as smell, taste.
- Learning difficulties: Discussion centred around information and appropriateness of information currently available. Seems to be aimed at children rather than adults such as use of cartoons rather than real people. Info also focuses on heterosexual sex and making babies/safer sex rather than wider sexual activities.
No funders interested as yet in developing more appropriate info.
Info from Brook excellent – recently updated in conjunction with Oakfield school in Nottingham. However more of a professional resource so not so helpful for parents.
Some recommendations from members –You, Your Body and Sex (though uses cartoons); Sex and the 3 R’s (professional resource) – has catalogue of explicit pictures at back of folder –£100; Share Special folder has session plans, focused on young people.
3. Presentation by Susan Quilliam – author of the new ‘Joy of Sex’
Part 1 – presentation:
Susan told us about her background as a protected child due to illness. Her family was Catholic however was given a message through her family that sex was a ‘good thing’, but also that sex has a bad press.
She studied a psychology and English degree then started teaching ‘liberal studies’ (now PHSE) at 4pm on a Friday to 16-20 year olds. Discussions about sex were part of these sessions.
From the early 80’s until now, Susan has been promoting sex as a ‘good thing’. She has written a number of books, most recently has rewritten the ‘Joy of Sex’ which was originally written in 1972. She was asked to rewrite it from a personal/social/female perspective (original book written for men). Despite the publishers promising Susan that she could write 2 other books on disability and non-heterosexual sex this has not yet been fulfilled.
Susan wants to leave a legacy in converting all kinds of professionals to realise that sex is a good thing. There has been much improvement in teaching professions but the medical establishment are very resistant.
As well as writing, Susan works with pharmaceutical companies on advisory boards and works with oncologists and cancer trusts. However in her 20 years as an agony aunt has only got 2 letters from disabled people…
Through rewriting the Joy of Sex, Susan discovered that progress has been made:
Sex is talked about in schools and colleges
Sexual decision making is encouraged
More information and knowledge around
More permission to experiment (internally and socially)
More sex means more problematic sex
Focus on body image – need to be young/tanned/slim/beautiful to have sex
Non-heterosexual sex seen as ‘weird’
Pressure for ‘perfect sex’
So what can be done? SHADA members are already done it!
Part 2 – Discussion: Susan asked us to imagine talking to someone in the medical establishment…what would we want them to know? What would we want them to know about SHADA?
- Discussion around language used such as ‘family planning’ – doesn’t cover broad range of services such as sexual pleasure courses run by FPA.
- Need to address personal sexual issues of professionals to reduce barriers, i.e. own view of sexuality. FPA offer training around this to help though some professionals are unwilling to address their issues. In reality this is not going to change – we need to support colleagues who chose not to do so.
- Repressing sex can lead to sexual denial which can result in bad behaviour such as gang rape, etc.
- Denying people’s sexual expression is denying their full humanity.
- Sexual problem may be indicative of an underlying physical/mental health problem.
- Sexual wellbeing impacts on physical/mental wellbeing.
- Previous government had wellbeing agenda however this is being reduced. Meeting wider wellbeing needs will be cost effective in the long run. This includes sexual wellbeing.
- Need to not just focus on sexual problems. Talking about sexual confidence empowers individuals – often education is the only intervention that is needed.
- Sexual energy is healing.
- Touch is important also in regards to wellbeing – doesn’t have to be sexual.
- 3. Sexual Respect Tool Kit progress
The SR toolkit will be accessed via the internet once completed. There will be a number of resources available – 2 minute text booklet for busy people, extended text, film (and audio only), 7 posters with the caption ‘Talking about Sex Works Wonders’, and further information.
Tuppy had very successful meeting with the Department of Health.
Once the Toolkit goes online, need help in promoting it – academic papers, press, grants for posters and diagrams, art director.
We watched the DVD which the Toolkit team had put together (well done to everyone involved).
- Testimonies helpful – voices were powerful. Stamp of authority from experts including a GP was also very good.
- Different sections helpful. Would be useful to be able to dip into different ‘chapters’ – can use prezzy to do this.
- Need bigger print and different colours that are easier to read. Consider subtitles (Belinda will look into this).
- Flowed well.
- Helpful training tool – would be helpful to bring out key themes to reinforce on website.
- If health care professional not confident enough to discuss sexual difficulties in more detail, gives ideas on who to refer to.
- Could use toolkit DVD in waiting rooms.
- 4. Presentation by Alex Cowan – Sex and Disability Peer Support and her proposed training.
Alex gave a very interesting and thought provoking presentation on her idea around disabled people benefiting from peer support. Please see introduction below and powerpoint presentation for more details:
Introduction – I found information on peer support for students, children, schoolchildren, breastfeeding, middle managers, people with mental health issues, people with HIV, people with muscular dystrophy, carers, employment, people with spinal muscular atrophy, blind people, drug addiction, stroke, alcohol, but nothing on sex and relationships let alone on disability and sex and relationships.
Disability sex and relationship peer support is about talking to another disabled person who has experienced similar circumstances and found a positive constructive way of dealing with those situations. These are just some initial ideas about sex and disability peer support and how it might work.
There also needs to be a peer support team leader, a protocol worked out, a training programme devised and several other key factors to be put in place. But I feel that peer support is a really useful and effective tool that could be further utilised by Outsiders, SHADA and other organisations.
Discussion following presentation and small group discussions
One person felt that he only respected advice from other people with a disability when he became disabled. Better is the person has a similar difficulty but does not have to be exactly the same.
Alex said she developed her skills in peer support through an interest in people and what makes them tick. She has developed the ability to put herself to one side and respond/react to what the person is saying. Wants to communicate what is most helpfl to them, which may include giving a personal example.
She will push/challenge people if she feels the other person is avoiding something. Need to feel your way about how far you can push someone. Curiosity and wanting to know, also liking people are good qualities in peer support.
Peer support helps both the person supporting and the person being supported. The term ‘peer support’ might put some people off. May be more willing to go if a consultant refers them to the group. Could combine chatting with other activities such as eating.
Regarding how many to have in peer support, could be one to one, or may need more (up to 6) though this would be a very different dynamic and require peer supporter to have skills in group work.
No notes/agenda – needs to be informal.
Is training a barrier to enthusiasm for running and peer support group? Could use social media to improve access to training.
Training could create a hierarchy – maybe guidelines online on different topics could be used instead, e.g. group dynamics, conflict resolution.
Could share responsibility for running group meetings.
Need a balance between discussing challenges and successes. People are expert in their own unique experiences.
Electronic forums make peer support more accessible but could increase social isolation.
- 5. Any other business
- New book has been published called ‘Sex and Disability’. However does not mention SHADA or Outsiders and is an academic book; thought provoking but hard going.
- BASE conference held recently focussing on sexual confidence. Ideas of how to provide non-challenging ways of talking about sex with different user groups.
Interesting medical developments also – using stents in penis to address erectile dysfunction; prostate cancer operations now damage nerves less so post surgery function still exists.
- Upcoming conferences:
Tuppy to speak at two conferences (please add in details Tuppy)
Inspiration4Ability 2 day conference in Bristol – 2/3August – Katie to look into getting SHADA and Outsiders leaflets displayed.
National Transitions Conference – 24 May – Birmingham Motorcycle Museum – Gill Leno speaking there – first time sex has been on the agenda – good for young people.
- Tuppy has reported that fewer people are joining Outsiders, fewer sex workers on TLC site and fewer disabled people using TLC site.
Some Outsiders members have created a Facebook page and are using this instead. However Tuppy concerned that this means they are more vulnerable.
Also fewer health professionals attending SHADA meetings lately, though Katie still gets lots of interest via email.
à Please promote Outsiders, TLC and SHADA
- Anna to contact Tuppy directly is she is able to get funding, to support Toolkit.
6. Venue, date and focus for next meeting
The next meeting will be on Friday September 28th from 11am to 4pm
Topics for discussion to be decided in near future.