Report on 3rd Meeting – 13th October 2006
* Debbee Arthur Respond helpline manager (chair)
* Katie Wiltshier Occupational therapy student – Salford University (secretary)
* Dr Tuppy Owens Outsiders Sex and Disability Helpline (convenor and scribe)
* Wayne Chapman RNIB helpline
* Lorna Couldrick lecturer, Brighton University
* Barry Jones RNIB advocacy service
* Sue Nathan Outsiders membership secretary
* Simon Parritt consultant (speaker)
* Eleni Stephani of Outsiders
* Christine Thomas RNIB helpline manager
* Fran McSweeney RNIB
* Rosalind Hewitt Therapist
* Lynn Herton FPA
* Jo Cumming Arthritis Care
* Helena Barrows Chaseley Trust
* Ilaria Primoni Sexual Dysfunction Association
* Mary Foster Sense
* Shital Shah Counsellor
1. Matters arising from the minutes
Tuppy reported news from Ilaria Primoni of the Sexual Dysfunction Association – her situation has worsened since the last meeting and she is now working from home. However Ilaria says there is nothing that SHADA can do to help.
Those present introduced themselves and their reasons for attending, as well as what they felt they could offer SHADA .
* Sue is membership secretary for Outsiders and had brought a list of issues regarding sex and related issues from vision impaired members.
* Barry works for the RNIB advocacy service and wanted to offer his perspective of someone with a sight problem.
* Eleni works on the Outsiders helpline and wanted to learn from the discussions.
* Wayne works on the RNIB helpline – wanted to offer both a professional perspectivein discussing issues that are ignored on the helpline, and a personal perspective of being a vision impaired gay man.
* Christine is the RNIB helpline manager – wanted to observe what SHADA does and find out what issues around sex were raised.
* Katie is a final year occupational therapy student at Salford University – very interested in the area of sex and disability which seems currently avoided/ignored by many health care professionals.
* Lorna is involved in research regarding healthcare professional (HCP) involvement in sexual issues. She is now working at Brighton University supporting education of (HCP)s and wants SHADA to be better known. Interested in finding ways that (HCP)s can use SHADA to support them in training and development of skills as her research has shown there to be poor education in this area.
* Simon is a Chartered Counselling Psychologist in Independent Practice and used to run SPOD – giving a presentation to the group (covered later in minutes).
* Debbee is helpline manager for Respond – for people with learning difficulties, especially around abuse and trauma. Wants to look at broader area of sexuality within SHADA – positive promotion rather than just sex as a problem.
* Tuppy is founder of Outsiders. Runs V-group (for disabled women), sweet talk (neurodiversity group), TLC (to help disabled men and women find sex workers) and the Sex and Disability Helpline. Recently attended “Different Stroke s” conference as a speaker ~ discussed sexual rights for disabled people (see below); the importance of communicating through touch or with bodies for people who have lost speech after Stroke ; importance of sex workers – a sex worker also addressed the conference. Tuppy was pleased that they had been well received and allowed to discuss these topics.
o Sexual rights for disabled people by Tom Shakespeare.
o To be treated as an adult with dignity.
o To have knowledge.
o To be sexual and take risks.
o To live free from sexual abuse.
3. Discussion about barriers to promotion of sex and disability within the UK
The following issues were raised:
1. General attitude of society – sex for disabled people is often seen as a “luxury”. It is often a difficult issue for people to talk about so it is easier to ignore/avoid it.
2. Lack of funding and low pay within charities – this is a knock-on effect from the general attitude of society. Funding is often only available for three years at a time, offering no job security. It also results in many helpline operators working for free or low pay and not feeling valued.
3. Retention of staff and working conditions for helpline operators – it was acknowledged that working conditions have a big impact on how long someone stays in a job. Issues such as restrictions on what could be said/discussed, a lack of variety in the role and a bland environment may have an impact on workers’ job satisfaction, tolerance and retention.
4. Access of information in the public domain for disabled people – issues include:
* Access of information on sex and related issues can be difficult e.g. no mention of sex under “daily living” section on RNIB website, so helpline callers may not think it appropriate to discuss such issues.
* RNIB to look at including this information on their website – Tuppy is happy for callers wanting to talk about sex to be referred to the Sex and Disability Helpline.
* Need to give disabled people (and helpline operators) permission to talk about sex and related issues.
* Advocacy is essential to help disabled people get what they want
* Moving forwards – the following suggestions were made
• Start more networking so we can find out who has what expertise in different areas e.g. prostitutes with vision impairment – who to ask for advice about this?
• SHADA to become a lobby group to get things changed, as there are currently no specific professionals such as consultants who deal primarily with sexual issues.
4. Sex, Blindness and Visual Impairment
The following points were raised from Outsiders’ members who have Visual Impairments, and from discussion at the meeting:
• Not knowing who to talk to at Outsiders lunch – can’t pick up “signals” of body language etc.
• RNIB can offer training for facilitators who could help introduce visually impaired members.
• Acoustics of room can make a big difference.
• Depends on if person introvert/extrovert.
• Up to visually impaired person to make an effort also – making a checklist of “ways in” to a conversation may help.
• Lack of confidence
• This is a universal issue, not just a problem for visually impaired people.
• Outsiders run workshops on increasing confidence, writing letters, behaviour on a date.
• Presentation/knowing what to wear
• RNIB can help with this e.g. ways of organising things in wardrobe, different shape buttons, etc.).
• Help is out there but many people don’t access it ~ could be due to lack of confidence, lack of knowledge or knowing who/where to ask.
• Although many people will get around this with help of friends, people who come to Outsiders are often very lonely and don’t have friends to help them
• Different issues depending on if born disabled or become disabled due to illness/accident etc.
• Services seem to be lacking for latter category – people’s physical needs addressed but their other needs are ignored.
• Appearance of visually impaired people is often seen as a low priority – similar issues for those with learning disabilities and other people in disabled community.
• Tuppy has found that many callers have bombastic voices and don’t seem sensitive to intonation and subtlety of vocal expression.
• Some young men learn to overcompensate for their disability, becoming “pushy” and so put people off.
• This overcompensation may partly be due to poor integration of young people with Visual Impairment s into society e.g. attendance at “blind school”, “blind college” etc.
• RNIB could offer workshops for visually impaired adults e.g. voice projection to help this.
* Difficulties with overprotective family (same for many disabled people).
o Need a way of supporting these families.
o Parents treat children with disabilities differently – this gets compounded by society.
o Cultural/religious reasons can be a factor e.g. arranged marriages.
o Protection from disappointment – implies “no-one will want to date you anyway”.
o Overprotection by family/care workers can mean not taking risks that may help someone move on.
* People don’t want to be defined by their blindness, so how can we move forwards?
• Tuppy will forward best books about sex so that RNIB can have them put into accessible format to go up on websites – RNIB will help with this (MSWord format is best for adaptation).
• Wayne will organise workshop at RNIB to include: listening skills, voice projection, looking at who you’re speaking to, intonation and tone of voice for different results, when do you know if it’s OK to kiss someone, how to touch someone without being threatening, reading non-verbal signals such as touch, how can you tell where someone’s “intimate space” is. It will be called “i2i”.
• Supporting families: Outsiders members to be encouraged to become more assertive with families; could also work with carers and families to let go (especially if someone is not assertive); Catherine Jones – RNIB family support officer for South East and London may be able to help?
• Supporting carers Influencing National Vocational Qualification curriculum for carers to include sex may be difficult as sex is low priority on agenda. Some organisations such as Chaseley include sexuality and sexual function in their policies. It is vital that carers have support from management for any change to occur.
5. Education and Access to Information/Knowledge
This seems to be the core of many problems.
* Problems getting factual information regarding aspects of sex and the law. Tuppy to forward the TLC Law section to Debbee and Lorna.
* Mary Foster said (via email) that Sense have a good policy on sexuality but the Sexual Offences Act has had an impact on what they are able to do.
* It is difficult to get any clear guidelines regarding what is/is not legal.
* Problems accessing websites – difficulty accessing websites regarding sex in public places affects many disabled people and those in residential care, as well as workers in this field who cannot access valuable information at work.
* Sex education in schools – this presently does not include sex and disability and is unlikely to as teachers do not have expertise in this area.
* On a more positive note – there are resources at RNIB specifically aimed at young people:
• SP – for young men (monthly magazine)
• APHRA – for young women (monthly magazine)
• GEMMA – magazine catering for lesbians
• BENT VOICES (not produced by RNIB) is journal for the “crip-gay” community http://www.bentvoices.org
6. Presentation by Simon Parritt – his experience of working in the field
Simon outlined his work history as a psychosexual counsellor that included working in SPOD as a counsellor/advocate role, working with healthcare professionals and helping disabled people have a “voice”. However he found if difficult to alter disabled people’s environments e.g. overprotective carers/family. He also did more general counselling work and worked in geriatrics. Although he dealt with clients’ sexual issues/problems (which eventually surfaced), Simon felt this role was not taken seriously by other (HCP)s. His view is that within the NHS, sexuality is not seen as an acceptable issue to address. During his work at the “Hammersmith and Fulham Action for Disability”, Simon experienced a low take-up of free counselling regarding sex and disability. He felt this possibly reflected disabled people internalising society’s view that sex is not an important issue. However, in order to move “sex and disability. up the politica” agenda, support is needed from both charities and the disabled community. SPOD used to offer (HCP)s training around sex but eventually closed due to lack of membership voice at the political level.
7. Discussion about disabled people and those who work with them
The following points were then raised:
* Disabled people
• It’s OK for someone to accept their disability ~ it’s part of them but does not define them.
• Having a disability is about both the individual learning to overcome it, seeing “negatives” as “positives”, and other people learning to deal with disabled people.
• Different issues around relationships are involved depending on whether the person has been disabled from birth/as a young person compared with those who have become disabled later in life, having had experience of relationships.
o Need to learn to deal with prejudices of others to have a relationships.
o Many disabled people seem to sort themselves out with regard to sex once 30 years+. However this can be problematic as their emotional needs tend to be “younger” than others of the same physical age.
* Those who work with them
• Need to remember that someone’s personality may not the result of their disability – find out what they were like beforehand.
• Two schools of thought among (HCP)s – ignore the disability, treat as everyone else vs total focus on the disability. Need to bridge the gap between these two extremes. (HCP)s need a broader view of sex so they can help people with disabilities, rather than just focusing on erections and orgasms. From a broader perspective, there are very few people who are totally unable to have a sexual relationship. It is encouraging that trainee doctors that Simon has been working with seem more open to sex and disability.
• Needs to be more (HCP)s that are willing to deal with these issues – seems to be less activity to help people through problems of sex and disability.
• Disability Now – Simon has a column but emails get edited e.g. has not received any of Tuppy’s emails regarding Outsiders. Part of problem is that Scope owns this magazine. Simon will try and push SHADA through this column
On a positive note, there has been more inclusion of disabled people in art e.g. Dominic Davis did an art exhibition that included sex and disability, Alison Lapper’s statue in Trafalgar Square, TV and plays are more inclusive of disability.
8. Role of SHADA in training health care professionals
Think about ways that SHADA can help educate (HCP)s. Need user-involvement of disabled people in this training.
9. How can SHADA help Outsiders
Tuppy explained that SHADA came out of wanting to make alliance with other disability-related organisations. Outsiders currently have a poor image in some disability agencies e.g. MS Society due to past misunderstandings, and Tuppy asked for support in promoting a more positive view of Outsiders so that more disabled people can find out about the services they offer.
* Need to sell other organisations something they want.
- Approaching celebrities who have shown a public interest in sex such as Graham Norton and Peter White.
10. Future of SHADA
In order to share the workload, it was agreed that the following positions would be held for 2 years – chair (currently Debbee Arthur), meetings convenor (currently Tuppy Owens), minutes secretary (currently Katie Wiltshier) and publicity officer (Tuppy has asked Jo from Arthritis Care to do this)
* It is the responsibility of those assigned to each position to ask someone else to take their place if they are unable to attend the meeting.
* Other positions that may be used on an informal basis (allocated each meeting) are timekeeper, scribe and advocate.
It was agreed that the group is evolving and membership/meeting attendance will probably be frequently changing. Passing on the contact details of another person in the organisation when someone leaves (as is already being done) will allow continuity.
* Agreeing an identity for the group and a mission statement would be necessary in order to promote SHADA more widely.
Wish-list/things to aim for ~ the following were identified.
* Gain knowledge
* Make people more aware
* Get reputation for talking about sex
* Enable health professionals
* Become better known
* Provide resources
* Advise and develop skills within existing organisations
* Positive promotion of disabled people’s sexuality
* Let heads of disability agencies know about SHADA
Katie outlined a playshop that she has been running – “Unleashing the Sensual Goddess Within”. She is hoping to run this with the V-group from Outsiders next year. The aim of the playshop is to enable women to give themselves permission to play, be sensual and feel more comfortable with their own bodies as well as have lots of fun!
Good sex and disability book – “Sexual Function in people with disability and chronic illness – health professional’s guide” by Sipski and Alexander. ISPN 0-8342-0886-5 Price around £50 Can order via Amazon.co.uk market place through Livrenoir.
Lorna offered to host the meeting in Eastbourne if people were prepared to travel.
Date of next meeting – Friday March 30th in London (time and venue to be confirmed) Discussions will include a focus on learning disability and some people with learning disabilities will be invited to contribute.
Additional information re. Sex workers and the current law:
The new govt strategy on prostitution appears to have replaced pimping offences with the new ‘control and gain’ offence. If a website is hosted in England or Wales we would therefore expect that it might be prosecuted for ‘contol and gain’ if both could be demonstrated. Although we have a new ‘strategy’ the Home Office (and Scottish Executive) are reluctant/slow/refusing to give us straight answers as to how sex workers might operate without falling fowl of legislation. We do not know for example whether two people working at the same address constitute a brothel. We do not know how street sex workers and their clients can operate without causing the ‘nuisance, offence or alarm’ ‘associated with prostitution’ that comprise this new offence. Will they, for example be held to cause nuisance, offence or alarm merely by being a client or a prostitute and if so, how will this status be established?
UKNSWP are asking these questions but we are not getting answers. In my view the government is thereby preventing us from knowing about the law in a system where ignorance of the law is no defence for breaching it.
Finally, a sex worker would need to be nuts to think that the police, local services and govt departments have not gathered data on sex workers from the internet. We can be confident that these details have been followed up to obtain our addresses and subsequently our names. You are being watched. You may want to write to your MP to ask why and how the new law will affect you. Naturally, you will want your MP to leave his/her response for you to collect at their constituency office. I’ll get back to you if/when I get a reply from my own MP.
Posted: 10th November 2006