Minutes of meeting held on 15th April 2014
ATTENDANCE LIST (with email addresses):
Dr Tuppy Owens (convenor and scribe) – Outsiders -
Adam Thomas (chair) – Elfrida Society, works with people with learning disabilities
Els Payne (coordinator) – massage therapist/Outsiders trustee
Tim Gilbert – brain injury case manager / nurse, Independent Living Solutions Ltd –
Eliot Lamb – (minute taker) brain injury case manager / OT, Independent Living Solutions Ltd – looking to raise the profile of sexual issues within his workplace -
Max Gordon – Elfrida Society – Health Facilitation Manager
Senelle – OT student
Ashley Savage – photographer and body image therapist
Alex Cowan – disability consultant
Sue Newsome (speaker) – sex therapist, sexual advocate and educator
Sarah Berry – sex therapist
Ally Richards – trainee clinical psychologist
Ian Jackson – residential manager, Beaumont College (Scope) – looking to draw up guidelines around sexual issues for staff and students
Paul Casey – training manager at Family Planning Association – interested in influencing governing bodies to address sexual issues
Louisa Jennings – works for KIDS – www.kids.org.uk
Juliana Slobodian – independent consultant/trainer, sex & relationships; people with disabilities
Joel Jeffers and Sarah Jones Nash (speakers) – Sarah has professional background supporting adults with learning disabilities – both have cerebral palsy
Lorna Couldrick (speaker) – OT pioneer – former OT and educator –
Maddie Blackburn – Following her semi-retirement from Together for Short lives, Maddie is a full time PhD Student researching the sexuality of young adults with life-limiting conditions in the UK at The Open University. She also chairs the Sexuality Alliance Group at The Open University. Here feedback and details were given at the start, as she had to disappear off for a meeting at the CQC:
Meeting with the CQC - Maddie has been advised to liaise with Cheryl Kavanagh and Lynn Davidson at the CQC. She is awaiting a date to meet them and will update SHADA when she has further information.
Why Maddie attends SHADA
She has known about Tuppy Owens’ work and her ability to make things happen for many years. She also attends SHADA as the Chair and the representative of the Open University and Together for Short Lives Sexuality Alliance for Life- Limited Young People (SALLY)
Johnny My Wheels (speaker) – has Cerebral Palsy (CP) –
Claire de Than (speaker) – human rights lawyer and lecturer
Charlie Willis (speaker) has CP, supports people with employing their own PAs –
Sally Lee – social worker and researcher, doing research on sexual wellbeing of people with physical disabilities
Katie Wiltshier (secretary), Jon Clugston, Amy Parkin, Stephan Baloch
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. Also, Tuppy will produce a Sexual Respect Toolkit Information Sheet that can be taken to conferences. Please ask Tuppy to send them if you are going to any talks, conferences etc – email@example.com
From this meeting:
- All SHADA members to e-mail Tuppy prior to the meetings briefly stating why they will be attending the meeting and what they would like to gain from attending and being part of the group.
- Everyone to e-mail case studies to Claire de Than detailing examples of sexual needs not being met. If individuals can be directly quoted this is more powerful.
- Lorna to contact the Royal College of Nurseing to enquire about the latest position on their sexuality and disability policy.
- Maddie to feedback on the outcome of her meeting with CQC on 15th April 2014.
- Group to form in order to write to governing bodies with a view to policies being developed to address sexuality and disability in standard, every day health and social care services. All interested people to contact Tuppy in the first instance — firstname.lastname@example.org
- Tuppy to consider approaching agricultural engineers to enquire about better design of sex toys and assistive devices. Also to consider 3D printing for this purpose.
- Sarah Jones Nash to ask her contact at Scope for a free room for future SHADA meetings.
The next meeting will be on Friday 14th November 2014 – venue to be confirmed.
Introductions All present introduced themselves and current projects – see above.
Cerebral Palsy and Enablement Presentation and Discussion
Sarah Jones Nash commented that it is “easy for people with disabilities to focus on what they cannot do”, that they “can see their situation preventing them from doing things”. She, her partner Joel, and Sue Newsome have recently met to discuss professional enablement.She said that sexuality is not talked about and confidences are broken because of disapproval.
Sarah commented that there are no clear routes of where to go and who to talk to about sexual issues. Tuppy commented that someone from Scope should lead on this issue and the service should be free.
Sarah stated that people are prudish in the UK, Tuppy added that the whole world is prudish. Sarah felt that staff are scared of what they can do. Jackie Lawrence backed this up stating that she visits a man at a Leonard Cheshire care home where there is a written policy on sexual needs but the staff are not following it.
Sue Newsome commented that all parties involved in enablement need to consent to what happens and that good communication is the key. An agreement needs to be drawn up and reconsidered as things progress. It is important not to be overambitious, and to limit performance anxiety. The couple’s PAs may be needed assist preparations, then leave the room but still be available. They must not be participating. Individual support for each of the individuals may be required.
Sarah is angry that disabled people have to search for the type of assistance that Sue can offer, and that is not readily available. Sarah and Joel attended Treloar College, a residential college and they had a staunchly religious care manager who put barriers in the way of them trying to meet their sexual needs.
Charlie Willis stated that “services should be built around the person”.
Adam Thomas asked if the rules and regulations regarding safeguarding people discriminate people, Sarah said they did.
Adam added that he and Max (Gordon) have been involved in facilitating a client with a learning disability to visit a sex worker and the process is taking months yet he or Max could just pick up the phone and arrange such a service immediately for themselves.
Johnny My Wheels commented that he attended a college in Exeter and they did not have good policies on sex and relationships. He had a girlfriend at college and they were not allowed to spend time alone together. He asked college staff about this and they said they could not help. He said “of course it’s going to happen in the toilet if there’s no policy”.
Johnny believes that sex workers are the only people who can teach sex to disabled people. He said that sex education at school and college was not useful. He added that “things need to be clearer about what is legal and illegal”. He hired a sex worker and when he told his able bodied friends about this they made comments like “you dirty bastard, you’ll get HIV”.
Lorna Couldrick spoke of Graham Jowett, previous principal at Treloar College who instituted a sexual health policy when he worked there. This policy was met with some resistance from some of the staff but he proceeded with it with the view that people with disabilities have the same rights as people without disabilities.
Alex Cowan commented “health professionals have their own problems/barriers/issues about sex that get in the way”.
Sophie Churchill said that she thinks it will be a “bumpy road ahead” for any changes in people’s attitudes and behaviour regarding people with disabilities and their sexual needs. She compared it to people’s changes in attitudes and behaviour regarding gay relationships over recent decades in that now gay couples can marry.
Charlie commented that “we need different attitudes regarding disability, overall” and that “we need people with disabilities in positions of power”. He recounted how a previous partner of his was surprised that he had cheated as if his being disabled made him a “safe bet”!
Diego Soto-Miranda said “if you woo enough people eventually you will score” and “you need to practise confidence over and over again”.
Sarah Nash Jones stated “people with disabilities can have poor self image” and “are treated like asexual beings”.
Alex Cowan commented “sex in the media is body perfect sex”, “disabled people are airbrushed out of the sexual revolution” and that she feels “excluded and angered by this”.
Tuppy said that people being photographed by someone like Ashley builds their confidence. She added that massage and other treatments can also increase confidence with body and self image.
Sarah Berry advised that the College of Sex and Relationship Therapists say that sex and relationship therapists are not allowed to recommend sex workers and that pornography is frowned upon.
Sue Newsome recounted how she had spoken about sexual surrogacy at a College of Sex and Relationship Therapists event. People attending the event said that they were interested in finding out more about this but the legal person at the event said that this sexual surrogacy would not be allowed as it involved touch. Claire de Than today added that consensual touch is legal.
Presentation by Claire de Than on the Law
Claire explained that all people have a human right to a private life (meaning behind a closed door) and a human right to a social life. They must be able to give consent.
She explained that everyone has a right to a sex life and that everyone working with people with disabilities has a responsibility to support those people with their sexual needs.
She said that safeguarding needs to be considered but this is a weaker right. Claire said that people are “bubble wrapped” via safeguarding processes. It is a breach of duty to not enable clients with their sexual needs. Supportive attitudes, education, finances, and support all need to be available.
She pointed out the following four things that make now a good time to launch a campaign for change:
- House of Lords Select Committee report on the Mental Capacity Act has over 1500 pages of evidence showing violation of human rights.
- Supreme Court has pointed out similar violations to the above report.
- Labour Party has stated that sex education will be compulsory if they win the next election. By definition this must include for people with disabilities.
- Criminal Law Commission – Claire has given them advice recently.
As an academic Claire is able to speak freely.
Alex commented that care packages are being reduced by local authorities and social and sexual needs are not being catered for. Claire said that case studies would be useful for the campaign.
Claire feels that sexuality should be a “freedom of expression” right as this is seen as more fundamental than a privacy right.
Claire described how she is 60% deaf and therefore she is presumed not to be consenting to sex in criminal law. She is deemed to have a communication disability and that sex with her is considered rape even if she instigates it. This is clearly ridiculous.
Claire mentioned test cases in the 1990s for group sex and gay sex in which cases were won allowing group sex and gay sex on the basis of human rights.
Claire asked for case studies to be e-mailed to her, address above.
Governing bodies training policies and guidelines
Tuppy had tried to collect ideas from people who were unable to attend the meeting, throwing out some of her own to stimulate them. Only Amyand herself had put forward ideas:-
Tuppy’s ideas: “creating a petition which has the legal obligations listed, to be signed by the relevant professionals; writing a considered document which lists the reasons why we want this done; producing a poster, etc”.
Amy Parkin’s ideas: “I like your ideas about persuading governing bodies-it would be great to link up with lots of professional bodies (COT/chartered society for physiotherapy/nursing and midwifery council) and create a unifying charter. A bit like the NICE guidelines for what good practice looks like in this area. Also, does SHADA use social media like facebook and twitter? Maybe you could reach out to professional bodies through social media to share your work/upcoming book?”
At the meeting we began with an introductory discussion as follows:
Paul Casey explained that the FPA provides advice to organisations. He frequently corrects the law in policies, aims will say one thing and practice guidelines say another (he assists organisations with correcting this). He said that people become motivated when an incident occurs. Policies can take a couple of years to develop. He feels that there is a current opportunity for policy development due to the recent change in law permitting same-sex marriage.
Juliana Slobodian reported that there is little communication between the different levels of staff within organisations. She said that frontline staff want clear guidance and can be frightened about what to do. People do not always tell you what they really think and feel. There is pressure to provide quick answers.
General discussion ensued about who do we target? How do we target? Who should do the targeting? Various people stated the following should be targeted: Faculty of Public Health (they advise the NHS), Royal College of Nurses, College of Occupational Therapists, Royal College of GPs, College of Social Workers, Training Body for NHS England, Ed Milliband MP and Yvette Cooper MP (both said sex education should be available for everyone), John Macdonald MP (is keen to protect the rights of sex workers), All Parliamentary Group for Disability, Joint Committee on Human Rights, Human Rights Lawyers Association, Cross Department on Disability Group including Norman Lamb MP, Health & Wellbeing Boards within local authorities.
Claire suggested using Freedom of Information requests as a strategy to persuade people/organisations to take action i.e. “If you do not do this………….could be a risk”.
Alex said that the Ketubah (Jewish prenuptial agreement) states that a man must pleasure his wife.
We then split into the following four groups to discuss further: health professionals, sex and relationship therapists, people with CP, and charities.
Feedback from the four groups:
Health professionals: this group discussed that there are stroke guidelines in the Royal College of Physicians guidelines about sexual health but these are poorly defined and vague. There are NICE guidelines regarding Multiple Sclerosis with some information on sexuality but they do not state who should address this. .
Lorna previously did some research looking at OTs, nurses, physiotherapists, speech & language therapists, and psychologists and whether they addressed sexual needs. At that time the Royal College of Nursing did have a policy on sexuality and disability but it has been withdrawn as it is out of date. The RCN does not currently have a policy mentioning sexuality and disability. Lorna plans to contact the RCN to enquire about this.
The College of Occupational Therapists is not proactive regarding sexuality.
Paul Casey and Maddie Blackburn are developing a pathway for people with life limiting conditions. Ally (trainee psychologist) is developing a pathway for sexuality.
Sally Lee has done some research on sexuality and physical disability and written an article about this for the College of Social Workers. She described this organisation as cautious. Sally is trying to explain that sexual health is part of the whole person. The College does not have a policy on sexuality. Sally would like to increase staff confidence in this area.
This group suggested writing to the College of Occupational Therapists, Royal College of Nursing, Chartered Society of Physiotherapists, Royal College of Speech & Language Therapists, College of Social Work, British Psychological Society, General Medical Council, and Health and Care Professions Council outlining the human rights position regarding sexual health and sexual needs. The letters would then state that SHADA can offer the organisations support/training/information about the law, the perspectives of people with disabilities, details of services that can help, etc. This group was unsure who the letters should be from.
Sex and relationship therapists: this group suggested writing to several organisations including the College of Sexual & Relationship Therapists, pointing out what is missing from the training syllabuses.
Charities: this group suggested targeting specific MPs stating strong concerns about the potential for the criminalisation of sex education to disabled people. It would be good to get this message across around central government election time.
CP group: suggested targeting the Care Quality Commission.
Group formation? Sophie Churchill suggested forming a group from the SHADA group to discuss, plan, and take action on this issue further. Today, Sophie, Sarah Jones Nash, and Sally Lee agreed to be part of this group. This group will need further development.
4. Update from Lorna Couldrick
Introductions: Now a granny, in a previous life Lorna was an OT and educator. She still does occasional training sessions, the last, done jointly with Alex Cowan, for the physiotherapy special interest in neurology group in the south east of England. Based on her experiences she feels passionate about encouraging organisations, professional bodies, etc to develop clear, robust, sexual health policies that support the sexual identity/expression of disabled people.
OT in Australia and beyond: Lorna prefaced this section by explaining that in 2007 she had completed a substantive research project entitled Sexual Expression, Physical Disability and Professional Practice. However she had withdrawn from the PhD process rather than complete the changes requested by the examiners which, she felt, compromised the ethical integrity of the research. Thus the only part to be presented for publication was the recommendation for a new model of practice to support health and social practitioners: the Recognition Model. Otherwise her dissertation had remained languishing on the shelf. Yet she still receives emails from around the world seeking more information.
Through these contacts Lorna met four Australian Occupational Therapists whilst she was visiting Australia in January 2014. Each is working or researching in the area of sexuality and disability. She has also recently been contacted by a Swedish Social Worker. These people are:
Narelle Higson: she has put together an excellent resource catalogue for people with MS. She has done a number of workshops both in Australia and New Zealand where the Recognition Model, she says, is taking off. She has also been approached by the editor of the New Zealand Journal of Occupational Therapy and asked to write on the subject. The editor had attended a workshop and emailed Narelle to say “As you pointed out there is very little literature on the subject of sexual activity and yet it is an intrinsic human occupation”.
Claire Lynch: is an Irish OT working in Australia. She is researching OT’s reasoning and practices associated with addressing sexuality with clients. So she is investigating OTs who are working positively and confidently in the area of sex with different client groups.
Bronwyn Russo is currently conducting a PhD study titled “Occupational therapy, pedagogy and practice in relation to client sexuality”. As part of the study she has put together a unit for undergraduate occupational therapy students around occupational therapy and client sexuality. She was contacting people who may have taught, or are teaching, workshops or university units of study to allied health professionals, particularly OT’s. So SH&DA members, if you do training, you may want to contact her. Her aim is to deliver the workshop and then follow up participants to see how this informs their practice.
Natalie Hamam: Is researching disabled peoples strategies to achieving a good sex life. So she is working directly with disabled people who feel their sex life is satisfactory/good to learn from them how they have adapted. Again SH&DA members if this is relevant to you do contact her.
Julia Bahner is a Swedish social worker doing her PhD. She had read Alex Cowan’s and Lorna’s chapter, Enabling disabled people to have and enjoy the kind of sexuality they want, and found it very useful to her research, which concerns the (im)possibilities for sexual facilitation in personal assistance services for mobility disabled people. Apparently this is a very taboo subject in Sweden. References for her two publications related to the use of Personal Assistants are:
Bahner J 2013 The power of discretion and the discretion of power: personal assistants and sexual facilitation in disability services. Vulnerable groups & Inclusion http://dx.doi.org/10.3402/vgi.v4i0.20673
Bahner J 2012 Legal Rights or Simply Wishes? The Struggle for Sexual Recognition of People with Physical Disabilities Using Personal Assistance in Sweden Sexuality & Disability 30:337–356 DOI 10.1007/s11195-012-9268-2
The Australian OTs told Lorna about: i) a new OT book (2012 Sexuality & OT, edited by Bernadette Halljar, Australian Occupational Therapy Association Press ISBN 9781 56900 3094 90000). They were not impressed and together they are writing a review for the British Journal of Occupational Therapy, ii) a Face book group called – OT4intimacy an OT network started by a UK OT (Alice Hortop) iii) Together they are trying to develop a special interest group.
All five people here have, or will be, joining SH&DA. If other SH&DA members wish to make contact please email Lorna to request email addresses.
Lorna reported that the consequence of all these contacts was that she had dusted off her dissertation, has turned it into an electronic version which is being posted on the SH&DA website. It is hugely long but bookmarks allow readers to skip to sections relevant for them and there is a description of the contents (Section 1.2: Orientation to the thesis) in the first chapter. She will also be sending out a summary to the many people who have contacted her in the past. This summary is attached and also posted on the SH&DA site.
- Sue Newsome’s visit to Malta
Sue recently visited Malta to provide some training on sexuality and disability. All of the residential care homes there are owned and run by the Catholic Church and Sue noted that being governed by one organisation helps with decision making. The care staff are nuns. Of note, one client at the meeting said “we will find a way to meet our sexual needs no matter what you say or do”.
- Any other business
Sex toys: Tuppy needs information about sex toys for an article. Sarah Berry suggested a pillow with a hole in the middle and Fleshlight (male masturbator). Discussed how some people with disabilities have difficulty getting a sex toy into and out of position or keeping it in position. Lorna suggested approaching agricultural engineers regarding designing better devices as they have been able to design and develop efficient devices for milking cows and the like.
Charlie Willis suggested using 3D printing for people to design and make bespoke sex toys.
Lorna mentioned Nick Dickman from Silver Sex, his company sell sex aids and sex furniture. He has attended a SHADA meeting in the past. Please see http://www.silversex.net/home.html for more information.
7. Venue, date and focus for next meeting
The next meeting will be on Friday 14th November 2014 – venue to be confirmed. Sarah Jones Nash will ask her contact regarding a free venue for future meetings.