26th Meeting 19th November 2018 10.30 – 3pm

This meeting was about 3 topics. Learning about about what happens when parents of young people with multiple and learning impairments listen to the experts, then learn about how to support people with social anxiety and lastly, hear from a lady with a progressive physical impairment and how it has affected her personal and sexual life.

Gill Leno – Sex and relationships educator, writer and activist – Queen Alexandra College, SENSRE, and Supported Loving
Claire de Than, Chair of SHADA – Professor of Law
Helen Dunman, Vice Chair of SHADA – PSHE and sex and relationships education teacher, PMLD/SLD, Chailey Heritage Foundation
Dr Tuppy Owens – SHADA founder, Outsiders, TLC Trust, SHADA International, and the School of Sex for Disabled People
Tim Gilbert – Brain injury case manager with nursing background
Dr Deborah Rafalin – Parent of young adult with complex needs; psychologist at City University
Sue Newsome – Sex and relationship therapist and educator
Lorna Couldrick – OT and counsellor
Chris Watling – Occupational therapist with community team for LD
Julia Bahner, Researcher at Leeds University
Els Payne – SHADA coordinator and massage therapist, organiser of the Sexual Freedom Awards
Martha Lopez – Psychologist working with clients with acquired brain injury
Elliot Lamb – Occupational therapist and case manager for people with brain injury
Claire Lightley – FPA training lead
Emma Buckett – Trustee for Outsiders
Jesse Elvin – Lecturer in Law at City University
Helen Dunman – Workshops for Parents of Young People with Learning Disabilities
Helen told us about the work she has been doing to support parents after she found that she was getting lots of questions about the ‘tricky bits’. As well as running workshops, there’s also a robust Facebook group which is very supportive. She mentioned that she is also getting parents of younger children now who are thinking ahead about what the needs of their child might be.
Helen noted that one of the most upsetting and difficult things that she has to deal with is the dilemma faced by parents and young people when there is a presumption that the young person may ‘never’ be able to consent. She described the continuum of relationships that are discussed at the parents group and her conviction that everyone can enjoy an intimate relationship, that it doesn’t need to be sexual.
Helen invited Claire to come along and led an open workshop for a small group of parents and the parent liaison worker – they discussed sexuality, disability and the law and put things into context. Parents felt it was comforting and reassuring and there was some great feedback about which has been shared on Facebook. It feels like it’s been put on the agenda. Discussions are very frank and anything can be asked freely – very positive.
Deborah asked a question about how we explain gender (including nonbinary etc) – Gill mentioned the Young, Disabled and LGBT project and book (and resources?)
Supported Loving made a lovely film with C4 – click here to watch!

Claire de Than – Legal Update
Claire gave us a quick legal update (slides to follow).
She noted that the new RCN guidelines for older people are mostly great but unfortunately there is slightly wonky case study concerning a client in a care home who wanted to engage sexual services. They have unfortunately got their wires crossed about whether or not there is an offence concerning facilitating sex. She is currently awaiting a response. If there is no timely response Claire will intervene!
Re: the new RSE guidance (and consultation) – again, really discriminatory language, and issues around the explanation of menstruation (only at secondary school!) – lots of issues. Claire has sent in a robust response which they have agreed to publish.
The new Mental Capacity Reform Bill is in parliament (it’s at the House of Lords committee meeting stage at the moment). There are some major omissions which hopefully will be re-added at this stage. The issues are around the deprivation of liberties related legislation, and the fact that their wording doesn’t work for care homes – hopefully one of the committee will be raising this as it goes through parliament. There is also a major issue with wording – substituted decision making only happens when someone has a disability that affects their brain, but unfortunately this is not clear enough.
Claire has agreed to write an article that comes out in December that addresses this – will send us the link for reference. Following this there will be a media campaign to raise the fact that the biggest change that needs to happen has been omitted.

Next up – the P Case. This concerns a 23 year old woman who was supported by her carers to have a sexual life with multiple partners. She has had to move from Manchester because she was going to be exposed. She has autism and other conditions and apparently a history of sexual abuse although this is not confirmed. A judge has found her repeatedly able to make decisions about sex although she has an IQ of 52. She is married, so she was found to have capacity for marriage and sexual relationships, but apparently not for her to meet new partners or to have other relationships. She was also fitted with a coil without her knowledge. The reporting has been really bad and sensationalised – the reporting has said that she’s been pimped out.
Claire is going to do some videos for the SHADA YouTube channel to challenge this reporting and misinformation. (Need a link!!)
Final update – there was an update to the Jersey Sexual Offences Law. Lots of positives, including their definition of consent. However, there was a proposal to criminalise all buying of sex as well as all selling of sex. It’s also now a criminal offence for underage teenage sexual offences – including kissing and hand holding! HOWEVER, they have dropped the criminalisation of buying sex and have adopted the English model of not selling sex in public.

Emma noted that there was an application for Outsiders from a lady with learning disabilities recently and whilst the usual process is to reject people with learning disabilities, as she had put ‘mild’ on the application form, Emma went back to her and asked what the situation was. She is very independent and has capacity, but has problems with reading and writing, and has therefore been welcomed to the group.

At this point we were hoping to welcome a speaker to talk about social anxiety but unfortunately she was unable to join us.
Tuppy did however have some points that were made by a contact who is a wheelchair user and who has social anxiety who contributed the following:

!f I am going to an event where lots of people will be gathered, I get there early so I can get used to my surroundings
Seeing lots of people in the street, I have to brace myself
Discussing this with friends is good and helps me feel less overwhelmed when out.

Els Payne and Tuppy Owens – Pursed Lip Breathing
Els introduced the session – she attended a lecture by Leon Chaitow (Breathing pattern Disorder/Hyperventilation: a mind body vicious cycle, Chaitow 2011) who discussed the issues around breathing pattern disorders and hyperventilation and how this can affect things like social anxiety etc as it makes your body respond in a certain way, leading to problems breathing, which then makes things worse!
She presented these slides outlining the issues posed by breathing pattern disorders:
And then, with Tuppy’s help, she modelled how to establish a correct breathing method. We all practiced getting into the right position – see attached scan of the right positions etc – and then the breathing patterns. The idea is to increase the oxygen into the body – there is a recommendation to do this every morning to ‘retrain’ the body to breathe properly and then it will follow as a more instinctive thing to do when feeling stressed!

Emma, one of the Outsiders trustees who supports both in the clubhouse and in supporting new members to come along, talked about how Outsiders works hard to reduce social anxiety for new (and existing) members who are trying to come along to an event or meetup. This includes making contact beforehand, and might involve offering to meet up to go in together.

Emma Buckett

Emma introduced herself – she is 38 and lives with a genetic disorder called Friedrich’s Ataxia. This is a recessive degenerative disorder which affects the spino-cerebellar system. There is no cure. It presents in a similar way to muscular dystrophy, multiple sclerosis and motor neurone disease. She explained to us that she was diagnosed at the age of 7, which was quite an early diagnosis as many people are not diagnosed til late teens/early 20s.

Emma explained that although there are many complications arising from her complex diagnoses, she has learned to live with it and prefers to concentrate on the positives. Things her disability doesn’t say about her: she loves cross stitch, hanging out with her friends, going to the cinema, hanging out with her family – although all of these things are becoming more difficult.

Emma told us that for her, the most difficult thing to face is mortality; she described how hard this is to come to terms with, and feels that this causes a lot of pressure and relationship breakdowns, as well as being an obstacle to forming and maintaining relationships. However it’s important to think about quality, not quantity! Emma explained that a degenerative condition is like being slapped in the face with your death every time an ability is lost, or declines.

Social life vs medicalisation; Emma described her university years as being positive as she had a couple of boyfriends, and had adapted accommodation etc and was surrounded by a diverse group of people. Unfortunately, as she graduated, her social life dwindled and this has been a real disappointment. Growing up, too, her social life was something which was facilitated to give her parents respite which is very demanding. After university, though, Emma’s physical condition degenerated quite quickly and everything that she did was dictated by her medical needs. She did not see people outside of her family or immediate work colleagues at all.

Social workers performing assessments would ask “do you have a social life/friends/a partner etc”, but unfortunately even if this was acknowledged there wasn’t a lot of movement to make changes. In fact, in the last couple of years, Emma has been told that as her medical needs are so great, there is no provision for her to have any kind of social life. This is devastating and makes people feel like a burden – there is no quality of life factored into this. As Emma says, without a fulfilling life, you’re not living – you exist, but you’re not really living. If people are able to give their opinion then it should be listened to – even if they cannot ‘contribute’ in any other way.

As Emma said, after university, she didn’t have a personal life for 17 years. She felt that she probably didn’t need one, and didn’t feel able to go ahead and pursue one. However in early 2016, after a brief relationship, Emma felt that she wanted to pursue finding a more committed relationship and went on to seek out Outsiders. The comfort of finding other people who experience disability meant that there was more likelihood of acceptance. Emma filled in the form without really knowing what to expect, but was welcomed into the group and has since enjoyed three relationships. She advocates for a healthy sex life, whatever it looks like and regardless of what you need to do to make it work. Despite them not lasting for a long time, they have all taught her new things and boosted her self confidence. She spoke openly about the challenges of having a complex set of medical issues and how that can impact on relationships. She feels strongly that Outsiders supports people to have healthier, happier lives, but it’s also highlighted the lack of support and provision for people to have social lives. So many people are lonely or socially isolated – this really motivates Emma to try her hardest to help them, despite the issues that the degenerative nature of her condition pose.

Lorna commented that there were many issues that Emma’s talk has raised, including the challenges of a condition that might change, rather than something which is static. This is something that professionals often shy away from too, because it’s unpredictable and nobody’s sure about what will come.

Emma also noted that the first and only time that anyone had ever mentioned sex to her – a professional – was during a conversation about incontinence in her twenties. This had never been raised with her before, ever.

Deborah asked if there was any support moving from university life to a working life; Emma responded that there wasn’t any specific support, and that she more or less was just left to get on with it.

Noted that the BBC team came along to film the Outsiders lunch on Saturday 17th November – this will be shown on TV on the 20th November, BBC1.

Julia will have the results of her research ready by the next time we meet – she has offered to present the findings for us next year.

Gill mentioned that she was shortlisted for the National Diversity Awards in the category of Positive Role Model for Gender following being nominated by a former student who she supported through his transition

Outsiders will soon have its own YouTube channel; more details to follow.

Lorna attended the OT Conference in Israel where she spoke about her work and was contacted by Anak Avenstein, an OT who presented the Recognition Model at the same conference. She has asked a couple of questions –

Are there any links to people in similar areas who would like an email contact?
Are there any sexual health policies for an Acquired Brain Injurty Service that can be shared?

Lorna has her email address for things to be passed on.

Date for next meeting – Monday 11th March 2019