22: 15th March 2016


Tuesday March 2016 in London

Minutes

ATTENDANCE LIST:

Dr Tuppy Owens (convenor) – Set up Outsiders http://www.outsiders.org.uk/outsidersclub/ – Tuppy started SHADA with Katie Wiltshier after she (Tuppy) felt alone answering calls on the Sex and Disability Helpline. Runs Outsiders, TLC website, Sex & Disability Helpline, SHADA, and the Sexual Respect Tool Kit

Keith Morss – works with Public Health and Clinical Commissioning Groups (CCGs) to improve social outcomes. Has a disability –

Tim Gilbert – Brain injury case manager for Independent Living Solutions Ltd – www.indliv.co.uk – Finds SHADA meetings educational and interesting because of the debates about enabling disabled people to access their sexual/relationships needs –

Eliot Lamb – (minute taker) Brain injury case manager / Occupational Therapist (OT) for Independent Living Solutions Ltd – www.indliv.co.uk – feels that sex and relationships needs are often ignored by professionals, likes learning and networking at SHADA meetings and sharing with his colleagues

Zoe Grace Cozens– trained as a social worker. Freelance trainer since 1996. Was Adult Protection Co-ordinator for Norfolk. Has written policy, procedure and training for sexuality within all adult services. Also self esteem mentor for 25 yrs, using the arts for people with LDs.

Robin Clifford – learning development officer for Hertford County Council, working with Zoe Grace, staff need training on

Miguel Tudela de la Fuente – FPA – project manager for good sexual health project for people with learning disabilities in Westminster – works with clients, their parents, and their carers. Social workers are scared of work related to sex. Enjoys SHADA to share his experiences, to listen to others, and to have the support of others

Ruby Stevenson – Artist who is painting modern sex workers in elegant old fashioned style, now also an education and training practitioner for Brook for people aged under 25 with a learning disability –

Jonathan Mahy – Has Cerebral Palsy (CP) which affects his legs and is severely sight impaired (condition called CVI) – he does campaigning about disability. A sex worker raised an issue with him about not having adequate insurance to work with a person with disability. Looking to expand his knowledge by being involved with SHADA –

Simon – he has a disability – he has found tantric practitioners more sympathetic than sex workers, he is more comfortable with tantric practitioners. He has seen tantric practitioner Katie Sarra and she told him about SHADA. His confidence has improved since he has being seeing a tantric practitioner.

Alex Cowan – Gives talks, presentations, workshops on sex, disability, and intimate relationships to health professionals and to people with disabilities. Co-writer of the Sexual Respect Toolkit http://www.sexualrespect.com. Health professionals rarely discuss sexuality. Alex feels in some ways society is going backwards regarding sexuality i.e. need to look a certain way, be married, etc. Some so called progressive sexual thinkers are thinking in a “tick box” way. Health and social care professionals need to look at their own stance, views, stereotypes. Finds SHADA helpful to share information/resources/ideas. Would like to do more work with health professionals and people with disabilities

Lionel – Alex’s husband and occasional PA.

Gill Leno – sex and relationships educator at Queen Alexandra College, Birmingham for people aged 16 to 25 with disabilities. Works with social workers. Does mental capacity assessments. Does some work with Brook and with British Institute of Learning Disabilities (BILD) –

Helen Dunman – lead for PSHE at Chailey Heritage Foundation for people aged 3 to 19 years, now working with people with profound and multiple learning disabilities, for example someone aged 18 years with the cognitive abilities of a 6 month baby. All the students have physical disability, most have no speech. Helen is interested in mental capacity, how do you find out what people really want? Works with parents: some are really engaged in the process, others are more cautious. Has a Facebook page. Worried about the way the government is making sex a dirty word. When Helen approached the Care Quality Commission (CQC) which regulates care provision in England they said sex was “not within our remit”

Sue Newsome – Sex Therapist, Tantric teacher, sex surrogate, sex coach – she shares the concerns raised above. and commented that trying to take on a big organisation is overwhelming. She has heard that The College of Sexual and Relationship Therapists (COSRT) may consider sexual surrogacy for clients with a disability.

Alice – sociology student – writing a dissertation on alliance and disability.

Calin Cristea – comes from a technical background. Been depressed before, tried medication which did not work, and found that visiting a massage parlour helped him. Had a friend from early childhood who was severely disabled who had limited life chances. Calin commented that lots of people have difficulty with relationships. He wants to learn from SHADA, is looking for guidance and advice. Wants to help people have fun.

Ella Hayward – doing a research project about people with physical disabilities engaging with commercial sex

Brad English – doing doctorate in clinical psychology attempting to address the question: “How can clinical psychologists best address care staff addressing sexual needs of people with intellectual disability” – care staff report positive attitudes but anecdotal evidence does not match, there are barriers in the way

Maxine Bell – OT at a residential college for people with learning disabilities, autism, physical disability, sensory issues – running the Friendship Relationship Education Sex Health (FRESH) programme – difficulties with some care staff and family members who say “I cannot do that” – come to SHADA to network.

Anne – nurse colleague of Maxine’s (see above) – also runs the FRESH programme – come to SHADA to network.

Romina Puma – comedian – using comedy to raise the topic of sex and disability.

Els Payne – Massage Therapist, Trustee and Coordinator of SHADA.

Claire de Than (vice chair), chairing this meeting) – human rights lawyer and lecturer, now a professor in Jersey – strong believer in everyone’s right to have fun. Written three articles this year including one about mental capacity and supported decision making. She and Tuppy wrote a piece to the government sstating why sex work should not be criminalised. Claire commented that people are scared of the law so do nothing or almost nothing. Within human rights law there is an obligation to create a level playing field i.e. disability makes a strong case for giving resources to create a level playing field –

ACTIONS FROM TODAY:

1. All SHADA members to let Tuppy know of any ideas and suggestions for the SHADA International website.
2. Ruby to help Tuppy develop her idea of a sex education book written by sex workers about sex.
3. Claire to lead a Working Group on reform proposal and setting up a database on useful articles and research.

The next meeting will be on 19th October 2016

Introductions All present introduced themselves – see above.

Projects and News

SHADA International
– Tuppy is setting this up and spoke about it today. Kevin Reel, OT and ethicist based in Canada, is a big supporter of SHADA and says there is no such thing as SHADA in Canada. He is assisting Tuppy with setting up SHADA International. Tuppy outlined the functions of SI as:

To promote pioneers
To create local groups
To encourage health and social care professionals to support their clients with their sexual needs

Today we discussed the following ideas:

Should there be a PIN number for professionals to access SI?
People should say on the SI website what has helped them, not just talk about barriers
Should family members and others be able to access the website?
Alex suggested having the choices of different size fonts on the website.
Possibly have a glossary on the website.
Discussed the possibility of inviting Asger Persson, Sheila Warembourg, women from COSWAS to join the SI board (currently just Tuppy and Kevin).
Lionel suggested having a “soft launch” of SI in summer 2016 to have a trial run and to iron out any issues.
Could include details about organisations such as Touching Base in Australia, COSWAS in Taiwan, and sexual surrogacy services in the USA, etc.
Ideas welcome – please contact Tuppy.

Assisted masturbation article – Tuppy recounted how a man from Leonard Cheshire was open about sexual expression on a Radio 5 programme but has now gone quiet.

Statutory services – Zoe Grace commented that she knows of a local authority which has reduced it’s policy about sexuality from 56 pages down to 8 pages, there is a lack of specificity in the document now. Workers have a high level of concern about what they can and cannot do. She recounted when the Sunday Telegraph ran an article several years ago along the lines “Tax payers’ money spent on pole dancers” and the county council became terrified.

Zoe Grace said that local authorities are repeatedly having their training budgets reduced. Gill added that training around sexuality is not included as standard. There was a group discussion about it being difficult times for statutory services. Claire said that there is likely to be change regarding mental capacity law, and that the UK is about to get into trouble for not living up to UN Standards. Robin commented that local authorities currently focus on mandatory training. Brad said that there is a dearth of research evidence on how to deliver training, adding that people’s values and beliefs need to be addressed.

Alex asked if there was any research on how lack of sexual expression affects behaviour. She met a health professional who worked with a man with a learning disability who recommended he access two hours of pornography each week, this reduced his bad behaviour, and he avoided going to prison. Miguel said he knows of some research papers. Zoe said some people have anal sex to avoid pregnancny, not out of choice, some have a lack of knowledge about how their bodies work. Manuel added that some people with learning disabilities are unaware of sexual pleasure and how body parts can be a source of sexual pleasure.

Claire suggested that we need some interdisciplinary case studies with 5 or 6 people contributing to the case studies, about 2000 words each, of “horror stories” i.e. what happens when sexual needs are not met, to show that we want to stop suffering and to increase pleasure.

Helen suggested we could use campaigning forums such as 38 Degrees. Brad said we need action based research that is large scale and longitudinal (this is too long for his current research). He said that health professionals are reactive not proactive, and that Google hits tend to bring up sexual offending and problems.

Claire suggested that we could opt for reform proposal rather than scientific research and include perspectives from professionals. A House of Lords Select Committee commented three years ago about people in a care home being told they were not allowed to be alone with their boyfriends. The reform proposal could explain why the law needs to change. Zoe Grace thinks such an article could be included within the safeguarding journal. Claire agreed to lead a Working Group on this and setting up a database on useful articles and research.

Sex Education for Disabled People Book ideas – Tuppy thinks a book written by disabled people and those who provide them with sexual services about sex and relationship education would be useful. She needs an editor. Jessica Kingsley not willing to publish (they say would not sell well enough). Someone suggested that Kindle may publish it. Ruby agreed to help Tuppy with this project.

Alex and Lionel previously thought about writing a book called “We garden too” as a follow up to “Secret Garden” (I think this was the title). Alex said that Leonard Cheshire used to have “In Touch” connected to it’s main website.

Freedom of Information request letters – Andy Buckingham was not present to give an update.

Tantric Practice and Sexological Bodywork with disabled clients – talk by Sue Newsome

We started with a brainstorming exercise asking what Tantra is. Responses included (and Sue added some of the following) “don’t ever come”, “goal free sex”, “woo woo (new age)”, “Sting” (the singer), “sex education”, “heart/sex/spirit”, “seen as a bandwagon (not regulated)”, “teaching intimacy and pleasure (need to know ourselves first)”, “very ancient spiritual practice in Asia”, “way to earn money”.

Sue explained that there are many “flavours” of Tantra in the UK places like India. It first came to the UK in the 1950s but did not translate well. It involves connecting to the spirit and can induce altered states of consciousness. We tend to have busy minds in the Western World.

Tantra Schools (www.shaktitantra.co.uk) in the UK offer training or individual events for self awareness and growth. There are a growing number of tantric practitioners in the UK. The website http://www.tantralink.com/ is a good website for tantric practitioners. Some people go on to do professional training.

In the last couple of years the UK has hosted Sexological Bodywork training, this originated in California with Joseph Kramer. This uses therapeutic touch whereas in psychotherapy touch is not allowed.

Psychosexual Somatics Practitioner Training Therapy (PSST www.psychosexualsomatics.com) launched a couple of years ago, developed by Mike Lousada. This is geared to working with sexual trauma. Typically the practitioner is a trained psychotherapist.

Sexological Bodywork is an international organisation, they propose that touch should be one way and the practitioner should wear gloves. PSST and Sexbod are geared to helping clients with problems.

Governing body in the UK for bodyworkers is ASIS (Association of Somatic & Integrative Sexologists – www.the-asis.org), this includes insurance, there are different categories of membership. Sue explained that the terms Tantric massage and erotic massage are essentially sensual full body massage. It is about sensual touch, helping the person to relax, to wake up the whole body, and will may include touching genitals, can include orgasm but this is not the focus. The intent in delivery is to support the client to have a pleasurable experience. There are probably a few hundred Tantric practitioners in the UK.

Lionel commented that he understood that practitioners would wear gloves for hygiene and boundary reasons but he thought these issues could be addressed in different ways.

Sex Education of people with learning difficulties – talk by Gillian Leno

Gill is a full time sex educator at Queen Alexandra College, Birmingham where there are 200 students aged 16 to 25 years old, most of them have a learning disability. Some students are on a vocational path, some go to university. Gill has always worked in sexual health, used to work at Brook and at HIV services. She is really interested in problematic behaviour. Her job allows her to research and observe. All students at the college have sex education every week for the 3 years they spend there.

The basic programme that Gill delivers includes the following:

Friendships and relationships and boundaries
Body
Puberty and menstruation
Masturbation
Consent
What sex is and why people do it
Contraception

Gill teaches three days a week, also does one-to-one sessions, and compulsory staff training. She teaches other colleges and schools around the UK..

Each student has a needs assessment. Students have made comments such as “you can’t have sex until you’re married”, and “you can’t kiss someone unless you love them”.

At a training event Gill was giving to Year 11 pupils (aged 15 and 16 years) at a school in Birmingham three years ago a female wheelchair user student (with a physical disability) was not invited to the event by her teacher. The teacher said to Gill that she did not think it fair for her to attend something about a topic that she would not be able to engage in. Gill enlightened the teacher about the flaws in her thinking and behaviour!

Gill worked with one young man who was prosecuted for downloading child porn, he had been groomed since he was 13 years old. He now works and has a long standing partner. Gill said “good sex education gives people a voice”. Gill said a big focus for her is rights.

Zoe Grace commented that if a person is disconnected from their body it means that they are not in touch with their physical instincts.

70% to 80% of the students at Queen Alexandra College have visual impairment. Gill uses tactile resources such as anatomical bodies, sex toys, teaches how to insert a tampon and how to put on a condom. One student was totally blind, Gill gave her a silicone model and she found the clitoris on it.

Gill said sex education for people with learning disabilities needs to be taken seriously and must include family members and other professionals.

Gill runs workshops for adults with learning disabilities in the community. People are able to disclose when they feel they have been at risk.

Gill acknowledged that there have been funding cuts in services but stressed that sex education must be delivered. Sex education is seen as a burden in some places but it has become imbedded in the culture at QAC. Helen added that sex education is also embedded in the culture at Chailey.

When asked if she is always given permission from parents to give sex education to their learning disabled children / teenagers, Gillian said yes, because she assures theparents that the sex education she gives them will keep them safe.

Attitudes social care professionals

Zoe Grace commented that many social workers come from dysfunctional families, some have experienced sexual abuse, and some find dealing with sex difficult. Miguel added that one social worker said to him “who goes to court when it all goes wrong?”

Tuppy shared the following e-mails she received recently:

“Dear Outsiders

I’m a retired social worker, who spent most of my 40+ year career working with people with disabilities, in hospitals and in the community. Tonight talking with two friends also in their 60′s, I reminisced about working in a ‘Young Disabled Unit’ near Bath in the 80′s, with a couple, both of whom had severe disabilities and wished to have a sexual relationship. They needed practical advice, so I rang SPOD, who were very helpful.

I was amazed tonight when my two (non-social worker) friends – whom I regarded as very liberal, reacted in a very unsympathetic way. I’m shocked, to be honest. I looked up SPOD and from there found your contact.

I just wanted to say that I’m relieved to find that help and advice is still available for people like my former clients and I wish you well in your work. I’m very angry about the current government’s attitude towards people with disabilities. It’8s heartening to hear that Tuppy’s work is continuing in what sometimes now feels like a very uncaring society.

I will make sure that my friends still in social work are aware of your existence. Thanks for some good news, when today the outlook for social care in the UK is rather gloomy!

All the best

RESPONSE FROM (a Social Work Teacher) TO MY EMAIL FORWARDING BARBARA’S

Hi Tuppy,
I couldn’t agree more with her negative outlook on the future of social care, I feel very angry about the way things are going.
I have missed coming the last couple of meetings and will be missing it again this March – but will be back in Autumn!
I resigned from social work at Christmas. It was impacting on my health and I was expected to reapply for my job(!) also I have needed time out to write up my thesis. I am now working at Bournemouth Uni one day a week while I write up. I aim to submit at the end end of March so am effectively hibernating until then. My conference is still happening, agency reorganisation got in the way so it will be a post doctoral project instead.
I’ve been rereading your book, will be referring to it in my thesis too. Kirsty Liddiard (who I suspect you know?) has agreed to be one of my viva reviewers, I’m really pleased.
Looking forward ot catching up in the Autumn”.

How to help Robin Clifford who is looking to develop a training programme for front line care workers to enable them to better support people with learning disabilities to discuss and engage in personal and sexual relationships

Robin explained that workers attended some training but it was too broad. Robin wants the workers to feel more knowledgeable and empowered. Discussed the following:

Need for clear boundaries
Include learning objectives on the course programme
Bring in some service users to the training events to “hear from the horse’s mouth”
Zoe used to do this type of training in the 1990s but there is less money available now
Could use Skype for some of the training

Venue and date of next meeting: Wednesday 19th October