Alex White | 04.09.2008 | 15:43
2.30pm Simon Stevens is an independent disability trainer and consultant, regular columnist in Community Care magazine and has been active in Scope since 1994.
He told the audience that he has employed a personal assistant since 1992, he loves watersports and hates peanut butter.
Simon then went on to tell the conference about his Real Guide to Cerebral Palsy, an idea he had years ago.
He said that nothing like it exists - a user-led guide that offers real information for real people that dispels the myths about cerebral palsy.
The guide, which will be published by Scope next April, would cover:
What is cerebral palsy?
Health and impairment issues
Living and Lifestyle
interesting facts and figures
personal stories
Simon ended by saying that people could contact him to get involved with creating the guide - he was looking for articles and comments!
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1.30pm: Andy Rickell said, “you've had your lunch; now it is time for sex!”
He introduced the liveliest of the session so far with Kath Gillespie-Sells engaging the audience about sex, sexuality and relationships.
Kath Gillespie-Sells has a wide-ranging career in disability equality which has involved being the founder and Chairperson of Regard, Executive member of BCOPD (now UKDPC), Director of Policy Development and Training at Nightingale Healthcare and a member of the Transport for London Independent Disability Advisory Group.
Kath is also a qualified Psychotherapist specialising in person-centred counselling within the disability and lesbian and gay community. She is a writer and speaker and the author of 'She Dances to Different Drums - Research into Disabled Women's Sexuality' and 'The Sexual Politics of Disability - Untold Desires'.
Kath described her work in the area of sexuality as a “ knee-jerk reaction to discrimination”: she found that in the feminist movement that disabled women were not wanted and that in the disability movement lesbian and gay were not wanted!
Sex is still a taboo subject, particularly with service managers, family members and personal assistants, but as Kath says, “Disabled people do it everywhere.”
Sexuality is a basic human right and we are all sexual beings but disabled people are discouraged from asking questions about sex because parents often don't want to talk about “murky, sexual, spermy things”.
Another barrier was to do with access when it is very difficult to “go to a nightclub, have a boogie, have a snog and go home.”
One of Kath's audience described how he had been married for six years but when his partner died the staff in his residential service were not allowed to put their arms around him to comfort him…
Another member of the audience said that she could talk to her personal assistants about sex because they could be objective but it was harder for her to talk to her parents who would be worried about somebody hurting their daughter.
Kath related the story of when she first had a personal assistant who made her late for work because she ran away screaming when she saw Kath’s lesbian partner!
A gay man in the audience described how he was “out” to his family and friends but that he wasn't “out” to his PA, which meant that he had to make sure his partner was out of the flat before they arrived!
Kath said it was important “not to deny who you are”.
Another gay man said that, in job interviews for PAs, “I tell everyone everything on day one.”
Kath said, was often parents who needed more help than their disabled children to come to terms with sex: “I'm an overprotective parent too but I've got to let my children take their own risks.”
She also said that it was important to say, “I want to be touched by this person. I want to be hugged.”
The hottest subject of debate was the issue of assisted sex and whether it was appropriate to ask Pas. Obviously this was an individual matter which needed to be negotiated with sensitivity and care. It was important that nobody was abusing anybody but it was also important to be “a little bit radical and a little bit cheeky to get people to think”.
Kath said there was a tendency to overrate the importance of penetrative sex, when touch and cuddling, friendship and intimacy were also important.
She concluded by saying all disabled people should have the right of sexual citizenship, to be full human beings.
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1pm It’s lunch now but I'm going to forego the delights of the buffet to report on the group discussion: What does it mean to have CP?
The delegates split up into groups so here are just a selection of their comments as I wandered around the conference:
· In comedy terms, it is important to ‘own’ the material, which is why it is not acceptable for a non-disabled comedian to make jokes about cerebral palsy.
· It is difficult for people with cerebral palsy to identify with each other because the condition differs so much person-to-person.
· Scope should help people with cerebral palsy set up their own groups because many are still parent-led.
· It’s easier for people like Laurence because they have had an education. However, even if you have had an education, it is still difficult to find employment because of people's attitudes.
· Cerebral palsy is not an impairment that you can hide. Even if your CV gets you an interview, you may be rejected on the grounds of your impairment.
· This is the first time people with cerebral palsy have had a voice.
· There is a danger of people becoming stuck behind their labels; we’re all disabled people; we are all equal.
· Scope has been quite comfy people who are a bit wobbly like me but they have been less good at dealing with people with more complex needs and speech impairments.
· Scope is the only organisation for people with cerebral palsy so it should concentrate on this.
· There are fewer younger people here today because they have more freedom.
· Having a confident sense of your self-identity often comes from the attitudes of your parents.
Don't forget to leave your comments and join in!
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11.15am It's absolutely heaving down there in the conference suite at Market Road so I’ve probably lost my seat by the time I get back downstairs…
Disability Now’s editor Ian Macrae talked to comedian Laurence Clark “Is CP a laughing matter?”
Laurence Clark is a Liverpool-based comedian and disability activist who joins us fresh from his ‘Spastic Fantastic’ show at the Edinburgh Fringe. The show told the story of how Laurence, as someone with cerebral palsy, earlier this year attempted single-handedly to reclaim the word 'spastic'.
His previous shows include 'The All Star Charity Show' and 'The Jim Davidson Guide to Equality'. As a child Laurence famously appeared on Jim'll Fix It and - more recently - on Radio 4, Newsnight (BBC2) and The London Programme (ITV1) and The Shooting Party (C4).
Ian began by saying that in the past disability comedy was regarded as a contradiction in terms or as Les Dawson might have put it, “about as funny as having a boil lanced”.
This has now changed with the advent of Francesca Martinez and Laurence Clark.
Ian asked Laurence what inappropriate questions he was asked by local radio journalists. Lawrence said that the main one he was asked about was whether he was exploiting his disability in his comedy that he likened it to asking Lenny Henry whether he was exploiting being black…
In his later show, Spastic Fantastic, Laurence is trying to reclaim the word ‘spastic’ from comedians like Brendan Byrne uses this word as punctuation for shock value.
Laurence went to Percy Hedley School for Spastics so has had to cope with the label that some time.
Lawrence then talked about having probably the poorest excuse for doing a PhD in computer science so that he could keep his accessible flat at University. He never really intended to working computers where having a five-minute conversation could be the highlight of his day so he joined North West Disability Arts Forum and tried to do some comedy.
He said to begin with he was quite aggressive but “you learn subtlety as you go along”.
Lawrence talked about his column at BBC Ouch, which he describes as “what’s pissed you off in the last four weeks”. He said last month for the first time he couldn't think of anything to say!
He first dreamt up the name Spastic Fantastic when he was 12 or 13 when he wanted to be a punk rock singer. He set up a boy band with three other people with cerebral palsy who also had speech impairments and they went to the South Bank one Sunday with a hidden camera and performed renditions of You'll Never Walk Alone, She Moves in Her Own Way and These Boots Are Made for Walking!
Watch this space for another update at about 1 p.m.!
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11.00am Scope’s Disability Commissioner Andy Rickell kicks off the convention with a rendition of one the Spice Girls greatest hits.
“Who-oo do you think you are? Some kind of superstar?”
Andy said he wanted to avoid talking about “our impairments, our carers, disablism and the barriers we face” and to start “thinking about who we are, as people with cp”.
Andy described his identity as being made up of: “other facets of who I was as a human being made up most of who I thought I was – a swot who loved learning, a brother, a son, a lover of sport and of pretty girls”.
He talked of “a chance encounter with the Spastics Society that radically changed me, at the age of 23”.
He picked up a leaflet about outdoor sports holidays in the Lake District run by the Spastics Society in the north east.
The leader of this holiday, the organiser, was a disabled women with cp called Sue Smith, who was really positive and assertive about the expectations she had of the people with cp who were taking part, and the people who were there to support us.
“She was very pushy, and made such an impact on me that three years later I married her. She taught me about the social model of disability – that disability arises because society excludes us through attitudes, physical barriers and the way society organises itself.
She also said I had a problem. That I would not embrace my positive identity as a disabled person. I felt I was happy as a disabled person, but I did not like the idea of that being seen as the key aspect of my identity. I wanted to be seen as everything else too – the Cambridge graduate, the successful tax consultant, the husband, the father.”
Andy talked about becoming a Christian:
“I decided I no longer wanted to be an accountant helping the rich to stay rich, but wanted my work to support those who had fewer opportunities or resources.”
He packed in accountancy, and joined an organisation called the National Network of Disabled Youth and Community Development Workers.
“I felt more and more confident about being “out” as a disabled person,“ he said.
In 1997, together with a group of local disabled people, Andy helped set up Disability Action Cheltenham and opened the “Equals” accessible internet café and one-stop shop for disabled people on the High Street in Cheltenham. Within 18 months there were over 300 members, all disabled people.
He then became Chief Executive of what is now the UKDPC, the national voice of the disabled people’s movement, and for the last four years has been an Executive Director at Scope, “ready to stand up for disabled people’s rights in public and in the media – very assertively a disabled person with cp.”
Andy said this hasn’t always been easy as disabled people have to battle the stereotypes imposed by others:
“Certainly the world is more than ready to tell people with cp who we are or should be, particularly those who don’t know us personally at all. Collectively, they want us to match the stereotype they have of us – tragic but brave, a bit weird, a bit slow, a bit stupid, a bit wobbly, “spastic”, a bit frightening, certainly physically incompetent, and probably mentally incompetent too, someone who needs looking after and ideally looking after away from them, someone who needs “special” schooling, being kept separate so we don’t get bullied, objects of pity and charity, socially embarrassing, “billy no mates”, possibly contagious, quite eccentric, sad, someone whom it is perfectly acceptable to ignore or “crips with chips”, people who should not have sex and certainly not babies, people who cannot hack real work, and who should never ever be given a position of authority or any real responsibility. Sound familiar?”
Andy concluded by saying:
“Well I won’t accept being told who I am by others. As a Christian and disability rights activist, I similarly won’t accept that any other person with cp should be obliged to put up with that either.
“We all have a right to be who we want to be, and we have a duty to support each other to stamp our own imprint on the world. Let’s think today about what our identity means to us, and what effort we might be prepared to put in to help other people with cp too.”
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CP Today: A Convention for People who have CP
Welcome to our first-ever CP Convention, ‘a major national conference with a focus on lifestyle, cultural and identity issues and not on the medical aspects of having an impairment’.
We’ll be updating you through the day on what’s being said and we’d welcome your comments, opinions and questions.
Just add comments to the blog or email editor@scope.org.uk and we’ll pass them onto the organisers.
Our regular blogger Rosemary Bolinger will be adding her thoughts after the event but feel free to air your views as we go along…
Here’s what’s in store:
11.00am Scope’s Disability Commissioner Andy Rickell kicks off the day with his thoughts on “Identity and People with CP”
11.15am Disability Now’s editor Ian Macrae comedian Laurence Clark “Is CP a laughing matter?”
12.00pm Group discussion: “What does it mean to have CP?”
12.45pm Lunch
1.30pm Kath Gillespie-Sells talks about sex, sexuality and relationships
2.30pm Independent disability trainer and consultant Simon Stevens presents his “Real Guide to Cerebral Palsy”
3.15pm Group discussion: Reaching out to people with cp
3.45pm Final questions and closing remarks
4pm Refreshments and departure
