28th September 2012


Report on 15th Meeting

 

ATTENDANCE LIST

 

Dr Tuppy Owens (convenor, scribe and speaker) Outsiders

 

Adam Thomas (chair) – Elfrida Society

 

Els Payne (Co-ordinator) – Outsiders

 

Becky Adams (Speaker) – Para Doxies

 

Claire de Than (Speaker) – City University/Human Rights and criminal Lawyer

 

Alex Cowan – Disability Consultant

 

Anji Page – Sense

 

Tim Gilbert – Independent Living Solutions

 

Eliot Lamb (minute taker) Independent Living Solutions

 

Sue Newsome – Shakti Tantra, Psychosexual Therapist

 

Denise Banks – Chailey Heritage Foundation

 

Louise Jennings – Kids -

 

Lorraine Stanley -

 

Miguel Tudela de las Fuente

 

Les Sutton – Accessible Sexuality

 

Shirley Peacock – Accessible Sexuality

 

Lorna Couldrick –  Occupational Therapist  and Senior Lecturer (retired)/Researcher

 

Apologies

 

  1. Katie Wiltshier, Jahnet De Light, Helen Dunman, Jon Clugston, Torie Appleyard, Paul Amey, Rebecca Lowrie, Carol Westwood, Gill Leno, Lisa Ferguson

 

 

ACTION (including ongoing from last meeting):

 

 

 

 

 

 

 

 

 

 

 

 

 

The next meeting will be on Friday March 8th in London

Topics to be confirmed when we learn what particular members need to bring to the group.

  1. Introductions All present introduced themselves and their reasons for belonging to SHADA and attending this meeting

 

Adam Thomas: works for Elfrieda Society supporting people with learning difficulties.  He has worked on sexual issues including a free condom scheme.  Will soon be speaking at a conference for doctors.

 

Becky Adams: has worked as a madam running escort agencies and parlours for around 20 years.  She recently published her memoirs, Madam, which won the Erotic Awards written Publication of the Year (beating Alan Bennett!), and this inspired her to come out of retirement and start Para Doxies, an agency           supplying all kinds of sexual services for disabled people. She is liaising with Tuppy (who runs the TLC Trust) with this venture.

 

Tuppy Owens: Founder of Outsiders, a charity for people with disabilities to find relationships.  Outsiders is to become a “virtual” service, which it no longer needs to may rent on an office, enabling Tuppy to stop running the Night of the Senses, an accessible charity ball raising money for Outsiders, as well as another fund-raiser, The Erotic Awards, in order to concentrate on other projects on sex and disability, including writing a book for professionals, just commissioned by Jessica Kingsley.

Denise Banks: is a manager at the Chailey Heritage Foundation for severely disabled children and young adults in Sussex. They have recently been working on a proposal to take to the Trustees to enable their adults to enjoy sexual             expression, and paid for Helen Dunman to research this strategy. Students had been asked what they wanted.  First was to share a room.  Second to look at porn.  Third was to hire a sex worker. Helen was unable to attend this SHADA meeting (busy rehearsing Romeo and Juliet with the students!), so Denise had come.

 

Angie Page: works for Sense, a charity for deaf and blind people. Part of her work is sexuality and relationship advice.

 

Miguel Tudela de la Fuente: works for the Family Planning Association  training people with learning difficulties, their families and carers about sexual issues.  He is interested in resources gained from SHADA.  He is frustrated by attitudes he encounters and feels he wants to be more militant in his approach.

 

Alex Cowan: Alex works as a Disability Consultant.  She is co author of Sexual Respect Toolkit.  She has presented at many conferences at the MS Society, doctors and students.  Feels disabled people get left out of the sexuality debates in medicine.  She is extremely disappointed that Tuppy is   giving up the Night of the Senses and she feels it is an event that has really        encompassed equality, sex and disability.

 

Els Payne: is the co-ordinator of SHADA.  She is a massage therapist (not sexual).  She has worked with disabled clients and became interested in sex   and disability after talking with them about their problems.  She is interested in learning more and helping because she feels it is an important issue.

 

Louise Jennings: works with disabled children on relationships and sexuality.  She was interested in hearing Becky Adams speak.

 

Lorraine Stanely: runs sex discussion group in her local area, Sutton and is writing a book on sex and disability.  She is also frustrated with lack of resources from local authority and disappointed to hear that Night of the             Senses is stopping.  She was interested in hearing Becky Adams.

 

Sue Newsome: teaches Tantra and is both a sex worker and psychosexual therapist. She feels passionately about people with disability enjoying a sexual life.  She feels that SHADA encourages the sharing of experiences, offering a chance to learn and keep up to date.  She would like to know what more she can do.  She is part of BASRT and has been invited to speak at their conference in a year’s time which will focus on sex and disability.

 

Les Sutton: co-runs an organisation and website called Accessible Sexuality http://www.accessiblesexuality.org.uk/.  It is a new project in the Midlands.  Les is also a social worker and is trying to work on ensuring sexual needs are met by Social Services.  He has learned the importance of speaking the language of “outcomes”.  The website has attracted international interest.  Les wants to create an influence so that  sex and disability becomes a mainstream topic.

 

Shirley Peacock: Les’s partner as well as business partner.  She feels that lack of information results in people shying away from the subject of sexual needs of disabled people.

 

Tom Gilbert: is a Brain Injury Case Manager for Independent Living Solutions.  His job is to help clients become more independent.  He comes to SHADA as it is a good place to network.

 

Eliot Lamb: also a Brain Injury Case Manager for Independent Living Solutions.  He thinks that SHADA is a good arena to network and to learn             about research and ideas.

 

Lorna Couldrick:      Lorna Couldrick: Retired occupational therapist, senior lecturer and researcher.  Early in her career she found that sexuality was not considered part of the OT role. She wrote a model for working with disabled people to replace the PLISSIT model called The Recognition Model.  She values the networking SHADA offers.  She believes that sexuality needs to be part of mainstream training for health and social care professionals.  She and Alex have written a chapter called ’Enabling sexual pleasure for disabled people’ in a book soon to be published, entitled: ‘The power of pleasure: sex, politics and enlightenment’.  A former OT student of hers at the University of Brighton (UoB) has completed a small scale research study with sex workers who have experience of working with disabled people.  A finding was that professionals displayed negative attitudes toward sex workers which were detrimental to disabled people wanting to use their services.  The student hopes to disseminate her research at the College of Occupational Therapists (COT) annual conference next year.  Lorna encouraged others to submit abstracts for the COT conference and agreed to forward details.  She also said other collaborative research studies with the UoB are possible.

 

 

Claire de Than: is a Senior Law Lecturer at City University on Human Rights.  She has researched, written and spoken on the human right to sexual expression.  She had come to bust the myths and is happy to give support or further information on relevant legal issues.  She also does criminal Law work, particularly on the law of consent.

 

Alex Cowan stressed the importance of co-training using both non-disabled and disabled people, which is more effective way (and more empowering) than omitting disabled speakers, to break down barriers.  Tuppy and Miguel agreed.

 

  1. Matters arising from the minutes

 

There were no matters arising from the last minutes.

 

 

      3. Discussion/Presentation: Enabling People to Meet their Sexual Needs

 

Panel: Denise Banks, Tuppy Owens, Adam Thomas, Claire de Than and Becky Adams.

People were anxious to learn more about the law, all about Becky’s plans, and very interested in the work being done at Chailey. Discussions were vibrant and inclusive, The order of the points made has been juggled to create a clear picture.

 

Claire De Than

The UN Convention on the Rights of Persons with Disabilities nearly managed to include sexual rights but two countries (including the Vatican) voted against it. Sexual rights do exist,  hidden in “privacy rights”. Claire feels it should be seen as more of an “expression right”. However, Claire told us “there is a more fundamental right to sexual expression than food or shelter under English Law.”

 

Miguel Tudela de la Fuente expressed frustration that social workers always use the excuse of “safety”. Claire confirmed that the priority should be “Rights, not Risks”.

 

Claire de Than said there were 3 main points to be clear on:

 

1. Prostitution is not a crime

2. Not intervening can make one liable

3. Human Rights are central to any support or any intervention

 

She said, if people are scared of being sued for acting:

 

The rule of thumb is anything you can do in your own home legally, you can legally help a disabled client to do in private (this would exclude, for example  using a brothel or trafficked sex workers as these are illegal).  If health professionals follow this principle, it is quite difficult for them to break the law when enabling disabled people to meet their sexual needs.

 

On consent: there are at least seven definitions of consent in English law at present depending on disability, communication, capacity etc.  The law is reactive rather than deliberately planned, so it has quirks, gaps, grey areas and overlaps.  The law is reactive. For example, in English law you can give consent before sleeping and then the act can take place whilst the person is asleep.  At the heart of much of the relevant law is duty of care.

 

Becky Adams

Becky has set up Para Doxies, an agency supplying sexual services to disabled people. The Para Doxies website is www.para-doxies.co.uk.  Doxy is an old English word for prostitute.  The agency currently serves London and the Home Counties.  It includes sexy phone calls and webcams, erotic readings, strip tease, massage, helping hand and full sex.  They have a dominatrix who is disabled and one who is able bodied.  They can take people for an outing, for instance to a swinging club, or arrange a cross dressing session.  They will do what the client wants.  She would ideally like to set up accessible premises, which would be a brothel, although Tuppy thought she should make it a house of enablement, and not call it a brothel.

 

Alex Cowan showed concern about raising expectations, i.e., disabled people being able to use the services but then being disappointed because the pleasures are short-lived.

 

This sometimes can be a danger. Becky gave the example of one of her clients with a head injury.  When she realised he was spending all of his compensation money on paying for sex, Becky tried to talk to him about limiting his expenditure.  He did not, spent all his money, and then never came back.  You can only do so much to help and it’s up to the individual to run their lives. It’s patronising to control disabled adults.

Becky has a huge network of sex workers.  They come from nursing and care provision, have good people skills, bedside manners, know about disability and are good at helping people.

 

Becky has received abuse from the media because of her work, but she thrives on controversy and is skilled at utilising the press. After a scandalous piece in the Sun, for example, she gets invited on television, where she eventually says what she wants to say.

 

 

Denise Banks

Chailey Heritage Foundation is for disabled children and youngsters up to 25 years old.  It houses a mixture of students from those who are physically disabled but cognitively intact, to others with both profound physical and learning disabilities.  They find the Mental Capacity Act unhelpful when considering dealing with sexual needs.  Adult students have sexual frustrations, even when they have a mental age of 6 months and many find it difficult to express their needs because of communication  difficulties.

 

Chailey are working on many areas but have, as yet, only developed a policy on the use of porn.  They find the area of sex a “minefield”. They plan to finish their proposals and hope the get them passed by the board and trustees.

 

Lorna Couldrick suggested contact with Treloar College regarding what worked well there. Lorna said that at Treloar, for example, pupils have to identify and manage a project to increase their independence.  This can be for anything they identify as important to them and has included: going to a gay bar, and buying a porn magazine.

 

Tuppy Owens

Tuppy spoke of her visit to Chailey, accompanied by Dolly Mopp, a sex worker on the TLC website and Greg Sams who is the volunteer who makes phone calls to sex workers for disabled people, if their support workers are unwilling or forbidden to do so.  They had been blown out by the Chailey set-up and profound impairments of the students.

 

Tuppy spoke of a meeting she’s had in the Department of Health with Alison Austin, director of Direct Payments, about need for funding for disabled people to meet their sexual needs.  She had told Alison, for instance, a rail could be put next to a bed to steady the client, a hoist or sex toys may be needed.  Alison Austin said she’d only really thought of money being needed to take a disabled person to Amsterdam (typical health professional assumption that British sex workers are inferior, and sex work is illegal in Britain). Alison did acknowledge that sexual expression is part of a person’s wellbeing, and asked for a written page of information.

 

Tuppy suggested that Becky Adams could be a facilitator to discuss sexual needs with the students at Chailey Heritage School. Becky agreed that, in this way the school can be removed from the process. She could learn the symbol languages used by people who don’t use words.

 

Tuppy Owens described her attempt to find sexual relief for disabled men who couldn’t masturbate.  This is quite separate to prostitution: it is cheaper and more regular and may even be quite impersonal. She refereed to her testimony from such a man, which she had distributed around the meeting. She said women never seem to ask for this help, perhaps because it’s easy to put a vibrators down a pair of panties. In rural areas, she thought students might be best people to approach, because they are not involved in the community and there was less chance of gossip and scandal.  Tuppy has written a set of guidelines. She hopes Becky’s service will be able to take this project on.

 

Advantages of Disabled People being able to meet their sexual needs

 

Sue Newsome has witnessed people gaining confidence and increasing in well being once their sexual needs are met.

 

Lorraine said that she needs far fewer pain killers since starting to enjoy more orgasms.

 

Anji Page said that the mental health of deaf-blind people improves if they have a sexual outlet.

 

Tuppy said there are numerous cases on her helpline where lack of discussion between health and social care professionals and disabled people has led to serious problems.

 

It was agreed that people with learning difficulties have fewer behavioural problems once they can enjoy a sexual outlet.

 

The consensus was that all these can be grouped together and dealt with under duty of care. Some research has already been done on this including some by MENCAP. Sexual expression is already part of the International Classification of Functioning, Disability and Health, also known as ICF, a WHO classification of the health components of functioning and disability.  This can be another useful tool in identifying people’s rights to valued intimate and sexual relationships.

 

 

            5. Afternoon Plans

 

The idea of afternoon small group discussions was changed to a Q&A on the law with Claire, followed by a presentation by Les.

 

            Q and A

 

Q: A mother found her physically disabled daughter’s sex toys and took them away.  Is the mother acting unlawfully?

 

A: It is not lawful to take someone’s property without their permission.  Human rights provide “the peaceful enjoyment of our property” and it may be a crime to take someone else’s property without their consent.

 

Q: If someone has a communication disability how do you get consent that they would like a sexual service? It is necessary to document how consent is being managed?  We fear that risk is there, if informed consent is not evident.

 

A: If a person has an impaired capacity for communication, it is necessary to think how do you gain consent in other areas of their life, such as washing, giving medicine, etc.

 

Miguel suggested a smile is enough.

 

Q: If a client is using the wrong implements with which to masturbate, thereby harming themselves, how do you convince the health professionals that something needs to be done?

 

A: The carers legally have a duty to meet the need of this person a safer way. It is just as much a breach of law to deny someone to do something/access something if this prevents them from harm.  There is a duty of care implicit if anything leads to harm.

 

Q: Will the carer get in trouble for helping to sell sex?

 

A: This is very unlikely unless the carer is making a profit or the client does not consent. There is a duty to educate people.  It is necessary to know a person’s needs and sexual needs should be assessed as part of an overall assessment. You can pass as much as possible over to the sex worker/sex worker agency.

 

[Denise Banks will send an anonymised sexual health care plan to Angie Page]

 

Q: Can anyone deny a hoist being used for sexual purposes?

 

A: : Lorna Couldrick explained that health professionals are no longer able to modify equipment without the manufacturer’s approval as the equipment may no longer meet the stringent testing requirements.  That said, a couple familiar with their hoist for moving and handling, may be able to use their hoist for the moving and handling required during sex, where it is safe to do so.  Many disabled people do modify their own equipment.

 

Claire de Than is to submit an article in the International Journal of Therapy.  It will be about the legal aspects.  If you need contact her you can on clairedethan@me.com.  Claire has written various articles on sexuality.

 

Q: Can a parent who is disabled be a sex worker?

 

A: It is lawful for women to work alone in their own home as a sex worker.  It would be wise for her children to be elsewhere. The risk would need to be demonstrated by authority for a case to be brought against the person.

 

Q: What would the attitude be of a residential home if a resident brought a stranger back from a night club?

 

A Miguel: Residential homes for disabled people have security measures to vet people who are allowed to enter.

 

Q Anji: those in charge of policies at Sense are too afraid to entertain any changes in favour of clients being taught how to masturbate or express their sexual needs. She feel paralysed.

A: Tuppy noted that the person at Sense who was liaising with Claire to influence change, Mary Foster, has retired, and suggested that Claire resume work with Anji. Claire agreed and is happy to help.

 

 

            Fair Access to Care Services: talk by Les Sutton

 

There is a written criterion (called FACS) used by every local authority in the UK to assess a disabled person’s level of need, and this is scored as Critical, Substantial, Moderate or Low.

 

For example, the level of help you need to wash yourself will be scored at the appropriate FACS level depending on the outcome of the social worker’s assessment.

 

Six broad categories which must be covered within an assessment are:-

• Personal/social care

• healthcare

• accommodation

• finance

• education/employment/leisure

• transport/access.

 

Assessing disabled people eligibility for services using the FACS criteria is a legal requirement for Social Services.

 

Local authorities (LA’s) are now also using a new scoring system called the RAS, which uses a point scoring system to calculate an award for social care.

 

Les says that if a LA makes a decision on the award based on the RAS score, but does not also ensure the outcome of the RAS assessment means the recipient’s care is appropriate to their level of need (from the FACS criteria), this means the LA is acting illegally as they are not providing adequate care for that individual.

 

The RAS system works on the basis that ‘Points mean pounds’ to pay for services. Each Local Authority decides individually on how many pounds is equivalent to a point, which means not everyone in the UK who is awarded, for example, 20 points, will receive the same amount of money or care provision as each other.

 

However, regardless of the amount of points awarded, it is the money being provided and what that money is able to buy that is important – if the money awarded is not enough to provide the level of care legally required for that person under FACS criteria, that LA is not meeting it’s legal requirements.

 

Each disabled person needs to ask their Social Services whether their assessment has taken into account FACS criteria, which can be seen online at:

 

http://www.scie.org.uk/publications/guides/guide33/files/guide33.pdf

 

It has been reported that some Local Authorities have, for instance, said they will only meet personal care, not domestic care or social care. However, if a person is identified as having an eligible need within any of the areas of assessment, they must then provide it in whatever area this falls.

 

Having knowledge of FACS will empower individuals to fight against an unfair assessment outcome, which is not meeting assessed needs.

 

It is important to note that local authorities should be including a person’s sexual needs within their assessment of physical and mental well being.  They can’t use blanket policies and need to be addressing this individually within their assessments. If an eligible need is identified for some form of sexual support, the LA has a duty of care to provide it as long as the method of doing so falls within the law.

 

Alex Cowan said her direct payments are at risk of being reduced.  Les said her Local Authority should be challenged. Challenging could be done either personally, or with advocate support, by using the FACS information to demonstrate where eligible needs would not be met if the proposed reduction takes place.  This information should be presented to the LA and a request for a new assessment, and a new social worker if this is felt appropriate, may be requested if needed.

 

Les also said that individual social workers are always responsible for their decisions personally even if directed by higher management.

 

Les’s organisation; ‘Accessible Sexuality’, along with many other services and sources of information on sex and disability, can also provide more individual support with making applications and challenging decisions regarding care provisions from social services – specifically with relation to sexual needs but also encompassing all areas of need.

 

More information can be found by clicking on the tab: ‘Services – Independent Living Advice’ of the website:  http://www.accessiblesexuality.org.uk

 

  1. 6.      Any Other Business

 

The Family Planning Association is now selling sex toys online at the Pleasure Shop.

http://www.desireandpleasure.co.uk/

 

Another website that Tuppy found called Fuck the Disabled which has a brilliant list of sex toy recommendations for disabled people, created by Babes in Toyland: http://fuckthedisabled.tumblr.com/

 

Tuppy has been invited to write two articles: one on sex and disability for disabled teenagers and another about Outsiders on VoiceBox, a new online resource for disabled people (not yet launched) based in Preston.

 

 

            7. Venue, date and focus for next meeting

 

The next meeting will be on Friday March 8th

 

Topics for discussion to be decided in near future, dependent on what the current developments or needs of members are.