Report on 2nd Meeting 12th May 2005
* Avril Jones CP Helpline (host)
* Dr Tuppy Owens Outsiders Sex & Disability Helpline (chair, host, speaker)
* Eleni Stephani of Outsiders (minutes)
* Lorna Couldrick MSc, DipCOT, CertEd, MBACP (SnrAccred) researcher (speaker)
* Ilaria Primoni of the Sexual Dysfunction Association (speaker)
* Julia Prince curriculum leader, student entitlement for people with brain injury, Somerset College
* Shital Shah of Aumshanti Counselling
* Wayne Chapman RNIB helpline
* Simon Parritt consultant
* Rosalind Hewitt therapist
* John Horan Disability Law Association, trustee at Different Stroke s
* Jude Kemp from Brook Advisory helpline
* Fiona Parkin of YouthNet
* Debbee Arthur of Respond
* Angela Reynolds of the fpa helpline
Tuppy welcomed everyone and thanked Scope and Avril for the use of the room and hospitality.
Tuppy had brought along some books which people might find useful, (both of which Abe Books www.abebooks.co.uk) have several copies of at very reasonable second hand prices) The Ultimate Guide to Sex and Disability. For all of us who live with disabilities, chronic pain and illness by Miriam Kaufman, Cory Silverberg and Fran Odette, Cleis Books ISBN 1-57344-176-7 and The Sex Book by Suzi Godson and Mel Alace, Cassell, ISBN 0304359912. She also recommended for younger people Guide to Getting it On by Paul Joannides. Vermillion ISBN 0 09 1856981.
2. HELPLINE POLICIES: It was agreed that perhaps most important is having quality staff, supporting them and their decisions, and providing as few restrictions as possible. Most people agreed that any abuse should be reported to the Child Protection Office, and Scope do this. Tuppy reminded them that this was not the policy at Mencap. RNIB policy is to report the their line manager.
Tuppy said that the Lothian Policy on sexuality and people with learning disabilties is both sex negative and sex phobic. It would be good to compile sex positive policies and put them up on the Outsiders website, for health professionals to work from and adapt to suit their needs.
3. ADVICE: Wayne said he would like to be able to refer callers to good books on sex, and we agreed to send the names and ISBN numbers to him, with a view to getting them put into accessible formats.
Brook is an information service only and they do not provide advice, counselling or referrals. Jude gave us an information sheet. Service Level Statement for Brook Young People’s Information Service.
One recommended method of helping people is to have a telephone conversation which is then followed up with a written reply by email.
There are technology issues in nursing homes and the like, with residents not having access to computers so they cannot find out where to get help and advice.
There is a lot of confusion over the legality of helping disabled people access sex workers. Tuppy said there is no law to prevent it so long as you are not making money out of it. Magazines like Disability Now and the media generally keep people ignorant of the law, and portray sex workers as disease-riddled, drug addicted, brainless victims, which is largely far from the truth. She added that The Samaritans ran a Brenda service to help obscene phone callers, and perhaps they still do.
4. SIGNPOSTING: It was agreed that one of the things that should come out of SHADA is professionals becoming better informed of who has what expertise. We should be inviting other members to send in their ideas. We learned of the Agony Bible at YouthNet. Used by their online peer advisors – which SHADA members can share. We won’t have the user rights to amend it, but if we think there are organisations or resources that should be included, please let Fiona know. The url is http://del.icio.us/agony_bible
There needs to be better sex education using symbols, for example on the website www.symbolworld.org.
5. WISH-LIST: As the day progressed, Tuppy added items to the wish-list for the group. Here is the list:-
* Sex-ed should generally become more disability-aware and we should be thinking outside the box, and all singing from the same songsheet.
* There needs to be a common understanding of gay issues, widen the work to include more old people, people with Aspergers and neurodiversity.
* We need to help professionals aware of where to send clients, by better networking.
* We need better publicity to encourage more professionals to join us and grow to become a National Body.
* Need better legal advice on consent
* Need to get our policies right
We need to produce a contact list of helplines that deal with disability and sexuality.
6. PRESENTATION: Lorna Couldrick MSc, DipCOT, CertEd, MBACP (SnrAccred), Training and Development Consultant Diffidence of Disability Professionals – understanding this in order to achieve change. This very interesting talk on Lorna’s research on the professional practice of three community disability teams (occupational therapists, physiotherapists, nurses, speech and language therapists, psychologists, and support staff) toward the sexual health of their service users. She interviewed 30 health professionals to find out whether they talk about sex (most would rather talk about death than sex) see what they are taught during training (sex usually gets pulled off the curriculum) and try to understand why they find it so difficult to discuss the subject. Reasons included socialisation, language, personal moral values and asexualisation of disabled people. Mostly professionals fear they would not be able to deal with sexual issues, and even fear that discussion could cause harm or danger. She said that no single profession takes on the role of dealing with sex, as they are not being “given permission” from their professional bodies. The subject is not therefore brought up in team discussions.
Lorna made the following recommendations:
1. We create a new model for sexual health practice
2. Improve education to prove disabled people are not asexual
3. Improve national and local organisational policy
4. Raise awareness in specialist disability services
5. Get information out into the mainstream rather than put in the Disability & Sexuality Journal.
7. PRESENTATION: Ilaria Primoni on The Sexual Dysfunction Association (formally the Impotence Association). The SDA are currently experiencing financial problems. Ilaria has no job security and may have to start working from home. Most “callers” come by email these days rather than on the phone. They are mostly older gentlemen and younger women and men. One in four women complain of lack of sexual desire. One of the problems is that callers won’t stand up and demand the service because nobody wants to identify as having sexual problems. That is why our services are not getting financial support. Many clinics are closing down, so people have nowhere to go. There was talk of Iiaria going to carry on her work at the fpa. Tuppy pleaded that she find a way to continue, and not to leave her post without sharing her expertise, perhaps putting it up on the website.
Ilaria distributed copies of the SDA newsletter.
8. PRESENTATION: Dr Tuppy Owens of the Outsiders Sex and Disability Helpline Speaking to Disabled Callers about their Sexual Problems. Tuppy explained how she had set up Outsiders 27 years ago. She completed the sex therapy course at St George’s (London University). Her expertise also comes from producing the Sex Maniac’s Diary which listed sex clubs, organisations and self-help groups. When SPOD closed, she took over their helpline which she now runs single-handedly and voluntarily – and absolutely loves it because it involves talking to people who are keen to have better sex, and extremely grateful for her advice. She speaks to everyone in plain language and tries to help disabled people see that their sex lives can start all over again in new and exciting ways. For example, men with MS who cannot reach orgasm by penile stimulation can try prostate stimulation. Being independent, she is not inhibited or restricted, and can enjoy “normal” conversations about sex, being sensitive to those who could be shocked, but unafraid to discuss Masturbation , fantasies experimenting, threesomes, swinging and all those practices which couples enjoy in the UK today. Obviously, some callers are nervous of change, but most call off with optimism in their voices. Calls average at 6 minutes. Outsiders is largely self-financing through our own fund-raising events, avoiding having to rely on grants. Tuppy’s main problem is getting help from other disability agencies and has been struggling for two years to speak to Hip Replacement surgeons and MS neurologists. She spoke about her sorrow that sex workers are not used more as facilitators and teachers – for example, to teach blind deaf people about sexual anatomy, and act as enablers for couples who want to have intercourse but cannot physically manage it without physical assistance.
9. Next meeting will be on Friday 13th October 2006 11 a.m. – 3 p.m. in London.
Posted: 1st August 2006