Friday 6th November 2015
Dr Tuppy Owens (convenor and chair for today) – 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. Her recent book is Supporting Disabled People with their Sex Lives: A Clear Guide for Health and Social Care Professionals -
Eliot Lamb – (minute taker) Brain injury case manager / Occupational Therapist (OT), Independent Living Solutions Ltd – looking to raise the profile of sexual issues within his workplace – feels that sex and relationships needs are often ignored by professionals – www.indliv.co.uk
Tim Gilbert – Brain injury case manager. Finds SHADA meetings educational and interesting because of the debates about enabling disabled people to access their sexual/relationships needs .
Lorna Couldrick – Retired OT – worked for many years in physical disability and also forensic mental health, then as an educator and researcher looking at sexual experiences of people with physical disability and the practice of OTs, physiotherapists, nurses, and psychologists (poor practice overall for all professionals). She wants to keep in touch with SHADA, hear what is going on, and offer some support. She recently supported an OT student with her research on sexuality, this student has used Lorna’s model as part of some training she has delivered to colleagues, colleagues then felt better equipped to consider sex and relationship issues. A group of OTs who Lorna met in Australia set up an OT sexuality interest group, they meet monthly online, and presented at the Australian National OT Conference. She will send a summary of her Recognition Model to put on the SHADA website –
Alex Cowan – Gives talks, presentations, workshops on sex, disability, and intimate relationships to health professionals and to people with disabilities. She is looking to expand her practice to include more one to one sessions. At the European Society for Sexual Medicine they made reference to the Recognition Model –
Dawn Corse - OT who would like to attend as she does some volunteer work with a neurological charity who are keen to know more about the work SHADA does and what services are out there. The charity has asked her to develop a sexual relationships policy. At this stage she is really looking to educate herself, hopefully network and seek peer support. Maybe even look at what she can contribute in the future.
Michael Ballard – Director of Sex with a Difference http://sexwithadifference.com/page1.php with Lorraine Stanley (see below) – has an engineering background. Was carer for ex-partner for many years.
Lorraine Stanley – Director of Sex with a Difference, which is a social enterprise company. Exhibited at Naidex in April 2015 where around 300 people spoke to her and Michael, keen to talk about sexual issues. Lots of interest from OTs visiting Naidex. Presented at Bristol University to 50 people including OT students.
Caroline – knows Michael and Lorraine (see above) – interested in the issues raised by SHADA.
Sheila Warembourg (Speaker) – based in France, has degree in sexology, 18 years experience teaching people with disabilities and their parents –
Romina Puma – Stand up comedian who has a disability, been on Channel 4 (television) regarding sex and disability
Jonathan Mahy – Has Cerebral Palsy (CP) – he said that sex is viewed as taboo and people are afraid to discuss the topic. He is involved with SHADA to learn more
Alice – Psychology student at Exeter University.
Mimi, Lyoko Shojima & Peiyu Kuo (speakers) – from Taiwan – see below
Diego Soto-Miranda – Disabled barrister – interested in the law, how to change it, and making accessing sex easier for people with disabilities
Jo – Diego’s PA.
Claire Lightley– works at FPA with young people with learning disabilities in Kingston. Does lots of work with people with autism about pornography. Works at a GUM clinic.
Antony Donegan – He supports people with profound multiple learning disabilities, and it seems resources around supporting people with PMLD with their sexuality are limited, and from what he can see, there seems to be a lack of specific guidance about how to go about supporting people with learning disabilities. He was delighted to read in the last meeting’s minutes that there are people who work with people with learning disabilities – so he is keen to make contact with them so they can share learning on an ongoing basis
Lawrence Shapiro – Has a physical disability, is an author, and has just completed surrogacy training AT IPSA in California
Ruby Stevenson – Young artist who is painting modern sex workers in elegant old fashioned style, coming along because she finds the subject so interesting
Gillian (Gill) Ray – Observer, who will be running the TLC website. Has chronic fatigue syndrome, known Tuppy a long time, here to learn more.
Claire de Than Vice Chair human rights lawyer and lecturer, now a professor in Jersey – strong believer in everyone’s right to have fun. Thinks may have assisted with changing the law on BDSM this week
Katie Sarra (Speaker) – Sexological bodyworker AND Tantric practitioner, also works as a sex and relationship therapist, background as an art psychotherapist in mental health services. Works with people with disabilities. Said that people with disabilities can train as sexological bodywork
Kian de la Cour (Speaker) - Sexological bodyworker, works with Katie Sarra, also works as a surrogate
Els Payne (coordinator for SHADA) – massage therapist/Outsiders trustee – became interested in SHADA after massaging people with disabilities –
ACTION (including ongoing from last meeting):
From past meetings:
- Feedback still needed regarding the Sexual Respect Toolkit – www.sexualrespect.com – please check it out and let Tuppy know your feedback.
The next meeting will be on Tuesday 15th March 2016 London
Introductions All present introduced themselves – see above.
Projects and News
Publicity Working Group – Lorraine Stanley, Helena Barrow, and Claire de Than make up this group. Lorraine fed back they have had a small group meeting. They discussed developing SHADA International and social media. They discussed the following at their meeting:
- Quote a week from Tuppy’s book Supporting Disabled People with their Sex Lives: A Clear Guide for Health and Social Care Professionals on Twitter.
- Succession planning for SHADA when Tuppy is unavailable.
- They have spoken with media PR about how to get the message out.
- They will contact the DWP stating that sex and intimacy needs should be included in their claim forms and documents.
Freedom of Information request letters – Andy Buckingham was not present to give an update.
Sexual wellbeing and social work conference –Sally Lee was not present to give an update.
American Association of Sexuality and Therapy conference on sex & disability in St Louis – Tuppy presented at this conference last summer. She prepared lots but could only present the introduction and then conference attendees were split into groups. Tuppy met Kendra Holiday, a sexual surrogate who has written a chapter in the sex education book which Tuppy and Sheila are editing.
International links – YAI in New York work with people with learning disabilities and have sent some videos to Tuppy. YAI want to be part of SHADA International: http://www.yai.org
TLC http://www.tlc-trust.org.uk/ - Gill Ray will be taking over the running of the TLC website which is a popular website
Law – Claire de Than has been speaking at lots of conferences recently including speaking about the need to reform the law on consent. The Law Commission has agreed to look at this. The ruling on the Brown case about BDSM may be overturned. She is also doing some work on sex education for people who are deafblind.
Scope – SHADA plans to discuss working with Scope http://www.scope.org.uk/.
Sexual Freedom Awards – taking place on 9th November 2015. Mimi, Lyoko Shojima & Peiyu Kuo from Taiwan have been nominated, and Claire de Than has been nominated as an ally. Kian de la Cour and Katie are two of the judges.
Katie Sarra and Kian de la Cour gave a presentation on this topic which is also known as somatic education. Katie and Kian are in the final stages of becoming accredited sexological bodywork educators. Katie explained that sexological bodywork has the potential to work alongside other modalities. She commented that everyone has been touched in ways that they do not like. During the fight-flight-freeze response the dura (sheath) around the brain and spine contracts, stops us feeling our bodies and this is not useful in intimacy. A typical explanation for premature ejaculation is people having a history of masturbating quickly and quietly.
The whole group had a group discussion about what “disability” means. Responses included deficit, different functioning, frustration of desires, different perception, society’s reaction, resourceful, learn new ways of meeting needs.
Katie explained that within sexological bodywork the person learns to relax the Dura mater ( a thick membrane that is the outermost of the three layers of the meninges that surround the brain and spinal cord). She spoke of there being “shame in the collective” regarding sex and sexuality.
Katie outlined the Wheel of consent – see http://bettymartin.org/videos/ for more information. She said questions that should be considered include: Who is this for? Who asked for it? Which way is the gift going? The four quadrants of the wheel are give, take, allow, and receive.
Kian used to work with tantric practice. He undertook training at Body Electric in California, amongst other training and studying. He explained that learning happens in the body. There are now 37 sexological bodyworkers in the UK. He outlined some of the work he does with people as follows:
- Orgasmic yoga – this is masturbation. He supports people to get better at this, to feel more, raise body awareness, helps improve communication within the body.
- Anal and genital mapping (can also do this with other body parts) – to build a mental map. He touches body parts and asks for the person’s response. Orgasm happens in the brain. He aims to create new neural pathways.
- He also spoke about the value of the wheel of consent.
- Scar tissue remediation using castor oil and massage softens the collagen and creates new neural pathways.
- Bodyworkers wear gloves, are fully clothed, and have insurance in place.
The Association of Somatic and Integrative Sexologists (ASIS): http://www.the-asis.org
http://www.seaschoolofembodiment.com/ – umbrella organisation
Training Sexual Assistants in Europe
Sheila Warembourg gave a presentation on this topic. She does professional training in France and has worked in other parts of Europe and in Africa. She runs discussion groups for professionals, parent and family discussion groups, and individual consultations.
Regarding sexual assistance she has been involved in French speaking countries.
Switzerland 2008-9: sexual assistant training for 6 women and 6 men.
Switzerland 2015: sexual assistant training for 5 women.
The sexual assistants should do other work so they are not doing sexual assistant work all the time. Two people with disability (one amputee, one blind) were certified from this training.
2007 in France things took off. Marcel Nuss who has muscular dystrophy attended a conference at the European Parliament and raised the issue of sexuality, this attracted lots of media attention. Two organisations on disability came together. Marcel Nuss’s wife used to be a prostitute. Not much political movement since 2007.
In France prostitution is not illegal, sexual assistant activity is not illegal, the intermediary is classed as the “pimp” and this latter role is illegal, but no-one has been convicted.
Called sexual assistant (SA) as no word for surrogate in French. Sheila is part of the SA training team for Corps Solidaires corps-solidaires.ch. 160 candidates applied for the training and 8 were chosen (2 men, 5 women finished the training), aged range 35 to 70. Fifteen month training programme included meeting with the group five times for three days each time (fifteen days of meetings/trainings in total), and there were one or two Skype calls in between meetings. Seven SAs were certified on 21st February 2015. The common strand of those chosen for the training is that they have something to give.
A typical SA session with a client lasts around 1.5 hours and costs 100 to 130 Euros. The time and fee is fixed and cannot be renegotiated during the session (unlike sex work). Some SAs says penetration can be included, some say it cannot be included, and some say it may be allowed.
The group had a discussion around women clients being disappointed if the male SA is not sexually aroused.
European Platform Sexual Assistance (EPSEAS) http://www.epseas.eu/en has other partners such as http://www.appas-asso.fr/ (Marcel Nuss involved, offer SA training) and http://aditivzw.be/nl/ (Belgian initiative, militant actions, and short SA training). In the French speaking area of Belgium people are less open to Aditi, and in the Dutch speaking area of Belgium people are more open to Aditi. EPSA aims to unite all the European partners i.e. associations, researchers, SAs, professionals, etc. EPSEAS has objectives such as public debate and development of political policies. Seven countries are involved with the Daphne Project including Belgium, France, Estonia, Holland, UK .
“Love is the heart of mankind’s emancipation” Jacques Warnberg
Collective of Sex Workers and Supporter (COSWAS)
Presentation by Mimi, Lyoko Shojima & Peiyu Kuo. In the 1950s lots of Chinese men came to Taiwan so prostitution was licensed. In 1997 the mayor of Taiwan abolished licensed prostitution. Bailan had been an underage sex worker since aged 13, became a licensed prostitute, then when licensed prostitution was abolished she began drinking a lot of alcohol, went into a coma and became disabled. COSWAS set up 24 hour care for her.
COSWAS made a film of a man with cerebral palsy aged 38 who went to Seoul (South Korea) to find a sex worker.
The main speaker Peiyu used to be a social worker and she stressed the importance of seeing the human being.
The sex worker Mimi spoke and explained that sex work remains illegal, the sex worker and the client are fined if caught. Sex workers are stigmatised and threatened by the police all the time. Police will take all action to criminalise sex work. Sex workers are not getting the respect they deserve. Sex workers are marginalised in Taiwan. She cannot rest and sleep well, is diagnosed with depression, and takes sleeping tablets.
The main speaker outlined that around 85% of people with disabilities in Taiwan live with their family, 10% live in institutions (lots of people together, 6 to 8 people share a room with no door). It is hard to masturbate in such circumstances. Hands are tied together by a caregiver if person masturbates a lot. 5% of people with disabilities live alone, families are responsible for them. In recent months a father strangled his son with cerebral palsy as he could not cope.
The speaker outlined the major parties involved, and how they interact. in connecting clients with disabilities with sex workers as (i) Disabled client (ii) Sex workers (iii) COSWAS (iv) Social workers and others.
Lyoko lived in Japan for a long time, she was bullied a lot at school, experienced isolation and exclusion. She stressed the importance of building an environment where the marginalised can speak for themselves. She has also been bullied in Taiwan as the Taiwanese do not like the Japanese. She came into close contact with sex workers then into close contact with people with disabilities. She helps to link the two groups of people and is not paid for doing this. Access to sex is linked to how much money you have. COSWAS has some funds from the lottery. She does not have any problems from the police as she is not paid. Not many sex workers willing to take clients with disabilities, they have dilemmas such as “If the police break in should I help the client or run?” COSWAS can discuss clients’ needs with sex workers and have discussions with sex workers and clients after sex work sessions to make sure all involved are ok. She may liaise with the social worker. Important for the client to speak about what they want and why regarding their sexuality.
Examples of COSWAS work:
- Worked with a 35 year old man with cerebral palsy who was afraid of getting a STI as his uncle got a STI at a massage parlour.
- Man with schizophrenia did not masturbate until aged 28. He went to church for many years, people there said he should get married then have sex. COSWAS discussed sex with him.
- Man with cerebral palsy aged 35 years married for five years, his wife never had penetrative sex with him, and this depressed him. He spent two to three months talking to COSWAS before visiting sex worker Mimi. He was worried that he would fall in love with Mimi. After seeing Mimi he wanted to have penetrative sex with his wife and COSWAS discussed this with him.
- COSWAS discuss with social workers or keyworkers how to discuss sexuality, help them to feel more comfortable with the topic.
- Worked with a learning disability institution where staff had removed a vibrator and the woman (who owned the vibrator) began using bottles instead.
- Man with schizophrenia shares a bed with his father so can only masturbate quickly in the toilet. He finds masturbation tiring but finds sex with Mimi energising.
Sex is not discussed openly in Taiwan, it is considered immoral to discuss it. Common theme in Taiwan is that people with disabilities are considered lower people. Often people are more relaxed about sex as a topic after working with COSWAS. COSWAS do not currently work with women as women with disabilities are even more repressed than men with disabilities.
COSWAS would like to work with others such as homeless people and older people. There is also a sex volunteer group in Taiwan, this is also marginalised like COSWAS. There is no such thing as a sex assistant or sexual surrogate in Taiwan currently. COSWAS would like to see sex work decriminalised. They feel it is important to note and address sexual needs and that marriage is not the only route to a sex life. Most sex workers in Taiwan do not want to speak out or be recognised.
Striptease for people with disabilities
Stacey Clare, who is a stripper, set up the East London Strippers Collective www.ethicalstripper.com last year. The members shared grievances about not having employment contracts, payments, terms and conditions, etc. Stacey was primary carer for a relative with schizophrenia, worked as a care assistant for a woman with cerebral palsy, has done mental health advocacy work, and last year did live-in care work.
She said that strip clubs often do not have wheelchair access, and often there is a lack of respect. On one occasion the mates of a disabled man made a “human wall” so she could perform a private dance for the man. She added that strippers provide a sexual experience for people. Katie Sarra added that neural pathways are activated with such activity. Stacey commented that the East London Strippers Collective is missing the voice of someone with disability.
The KitKatClub in Berlin has the motto “Do what you want but stay in communication”.
Role of carer/support worker/PA
There is a table in Supporting Disabled People with their Sex Lives: A Clear Guide for Health and Social Care Professionals about what a carer can and cannot do connected with their client’s sexual expression. Claire de Than commented that a test case is needed with someone as a figurehead saying “Am I at risk of criminalisation?”
Claire de Than said that Mr Justice Baker, a Judge at the Court of Protection has commented that the law for people with disabilities should not be more repressive than for anybody else.
Date of next meeting:
Tuesday 15th March 2016 in London