Scope For Change is a unique scheme from Scope to train a new generation of young disabled campaigners. In April 2016, the first recruits attended a training bootcamp to learn the latest campaign s…
This disabled woman has seen her care package cut by two-thirds since 2010. Without that help, she is sometimes unable to undress or get into bed
Today we are opening applications for Scope’s new campaign training programme ‘Scope for Change’.
Between the ages of 18 and 25 and want to learn campaigning skills? Then find out more and apply for the new programme.
Young disabled people who we speak to say there are still too many barriers in society that prevent them from doing the day-to-day things that many people take for granted.
Much of this is down to the physical and attitudinal barriers people face along with the negative attitudes towards disability.
Thankfully we know that young disabled people from across the country are passionate about making a Britain a better place. We want to hear from these people who want to campaign for change, meet new friends and learn new skills.
Rebecca Bunce is a campaigner who’s learnt valuable campaigning skills with Scope and Campaign Bootcamp.
“Scope kindly gave me the opportunity to learn exciting…
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An activist has told a Labour conference fringe meeting how her attempts to secure the support she needed after becoming disabled left her feeling “like a human pinball”.
Catherine Scarlett became disabled four years ago, and has faced an “incredibly steep learning curve” in finding out “what support is available and how to get it”.
She told the fringe event, which was hosted by Scope and the Fabian Society and focused on the extra costs of disability, how it was only receiving disability living allowance (DLA) that allowed her to fund the manual wheelchair with powered wheels that she needed.
Last year, she said, she faced “quite frightening” disability-related costs of more than £10,000.
She said: “If it hadn’t been for DLA payments I would not have had the money in the bank to get the wheelchair; I wouldn’t have been able to carry on working.
“I managed to carry on working for a year after I got it. It gave me back my life. It means I can get around independently.”
But she said that coalition spending cuts to working-age DLA, introduced as part of the move to the new personal independence payment (PIP), needed to be reversed.
She said the PIP process was “designed to stop people getting benefits. It is taking away the money that they need to lead independent lives.”
Scarlett also said the government needed to remove the “disgusting 20-metre rule”, which has slashed the qualifying distance for the higher rate of mobility support from 50 metres under DLA to just 20 metres under PIP.
She said: “I have heard from so many people who have lost their independence because they have lost their ability to have [a Motability vehicle].
“They cannot work because they have lost their ability to get out of their houses. Those people need to be given their independence back. It is totally wrong.”
Scarlett said that having to deal with DLA – and later apply for PIP – employment and support allowance, wheelchair services, hospital departments, social services and the council’s housing department had left her feeling like “a human pinball bounced around by all different departments”.
She is also taking her employer to an employment tribunal, after facing three years of “really severe disability discrimination at work”.
Scarlett, now a town councillor in Driffield, said: “I feel like in the last three years my life has been scripted by Kafka; it’s been going from bizarre to even more bizarre.”
News provided by John Pring at www.disabilitynewsservice.com
- Scope is highlighting the assumptions often made about disability and sex
- A new campaign, End the Awkward, takes lighthearted look at the issue
- Emily Yates, 24, has cerebral palsy and has been dating Rob for three years
- Sam Cleasby, 34, from Sheffield, says inflammatory bowel disease initially ‘rid me of my sexuality’ and ‘it’s really easy to become isolated’
Three disabled women have spoken openly and honestly about their love lives in the hope of tackling some of the prejudices that exist in society.
It’s part of charity Scope’s new campaign End the Awkward which aims to challenge the assumptions often made by able-bodied people about sex and disability.
Scope believes that there is still a long way to go with research showing that only five per cent of Brits have ever asked a disabled person out on a romantic date.
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Richard Lane, head of campaigns at Scope, said: ‘End the Awkward is all about challenging attitudes to disability in an open and lighthearted way.
‘We want people to relax and not let their assumptions about disability and sex get in the way of what could be an amazing connection with another person. The important thing is to focus on the person and the connection, not the impairment.’
Here FEMAIL speaks to three disabled women about their love lives:
EMILY YATES AND ROB HUGHES
Emily Yates, 24, was born with cerebral palsy and has been a wheelchair user since she was nine. She’s been dating her boyfriend Rob Hughes, also 24, for nearly three years.
Rob is able-bodied and works in IT. The couple live together on the border between Chester and North Wales.
Emily, who is an accessibility consultant for disability charity Enhance The UK, says she enjoys a healthy intimate relationship with Rob, who she met while on a charity trip with Journey of a Lifetime Trust (JOLT) to Southern Africa when they were both 16 years old.
She told FEMAIL: ‘We’ve got a really good sex life.
‘I’m quite happy to say that he’s the only person that I’ve slept with. We’re best friends and really comfortable with each other. There’s nothing sexually that we can’t do.’
She adds that while her condition doesn’t cause her any pain, it can mean her muscles are tighter than an able-bodied person so different positions can be tricky.
Emily explained: ‘Getting into certain positions at the start was really, really tough but obviously now I’m used to having sex and we know what works.’
‘I’ve got no complaints, it’s great! There’s nothing we can’t do although obviously some things take a bit more getting used to.’
Emily believes that communication is the key to a fulfilling sex life.
‘We met when we were 16 but didn’t get together until we were 20, so we were already very comfortable with each other before anything happened,’ she explained.
‘The way able-bodied people can view the disabled can be a double-sided coin.
‘In one respect, people think disability is undesirable; society has taught us that disability is a negative thing, which, of course, in some ways it is.
‘But there’s this myth that disabled people can’t, won’t or don’t have sex.’
‘For us though, it’s given us more intimacy because we have to communicate so much more.’
‘Men have come up to me in bars and instead of introducing themselves, the first thing they’ll ask is “how can you have sex?”
‘They’ll think: “she’s attractive but I want to know if she can have sex.”‘
Emily’s favourite response? ‘Yes I can but I won’t be having it with you.’
Questions aren’t a bad thing, though. She says she encourages them because: ‘it’s the only way to strip away ignorance.’
Her work for Enhance The UK sees her deliver body image workshops to schools, organisations and workplaces all over the UK.
The charity’s latest campaign, Undressing Disability, shows Emily and a host of other disabled people stripping off for photographs that will form part of an exhibition at the Gherkin in London later this month.
Emily says disrobing for the cause was a no-brainer: ‘It aims to remove this taboo and get the conversation going because dating and having sex are different when you’re disabled.
‘People are often really, really embarrassed [to talk about the issue] and there isn’t always a forum to discuss it.’
KELLY AND JARATH PERKS-BEVINGTON
Kelly Perks-Bevington, 26, from the West Midlands, has genetic disorder spinal muscular dystrophy type three and has been in an electric wheelchair since the age of 11.
Kelly, who works for a lifestyle management company for professional footballers, married graphic designer and artist Jarath – or Jaz – also 26, six months ago. They were friends in college but went their separate ways before reuniting in their early twenties.
Kelly told FEMAIL how strangers have come up to them to ask if and how they have sex, and even assumed her brother is her husband because he also uses a wheelchair.
‘I really don’t know why people assume that,’ she said. ‘When we were younger we’d be shopping together and people would just say “Is that your boyfriend?”‘
‘Even on our wedding day we had it two or three times.
‘One of the hotel staff went up to my brother and said “What’s your room number because your wife’s just bought a cocktail and you’ve got to pay for it”, and my brother said, “That’s my sister and she can pay for her own drink!”
‘Jaz will get a lot of remarks in the pub like, “Oh your girlfriend’s the one in the wheelchair, oh fair play” – as if to say “well done you, you’re doing her a favour”.
‘He’s also had more sexual questions like how we do stuff, can we have sex like a normal couple – and I just think “what’s crossing your mind to make you ask that?”
‘We respond differently depending on the situation and what we feel like at the time.
‘Sometimes if we’re on a night out we’ll make up a story and laugh it off and then other times we’ll just answer their questions and keep it vague – but it depends on how many drinks we’ve had!
‘When I was younger I was a bit overly confident. I used to put on a bit of a front and make out like nothing was a problem even though inside I probably felt a little bit differently.
‘I think that probably put people at ease though, because I seemed so normal about it.
‘There were certain times when I met someone at a club and they’d act a little bit awkward but I treat every situation as it comes and speak to people how I like to be spoken to.
‘I just get it out there because I’d prefer that to someone holding back a question and making their own assumptions about you.
‘I do have to take the lead a bit and talk people through things. It used to be a bit of a pain because with every new relationship you have to go through that again.
‘But I think you should discuss things as you would with any other person really – disabled people are just the same as anybody else, so any questions you’ve got just ask and the person hopefully shouldn’t have a problem with it.
‘It helps that me and Jez were best friends to start with and so we just talk about everything really openly.
‘When we were first together, though, I used to make him stand outside of the bedroom so I could get undressed and get into the bed myself – just to be independent, which was quite funny really as he’d be waiting there for ages.
‘One day Jez just turned around and said “Wouldn’t it just be easier if I helped you” – and I think I needed to know that he was willing to do that.
‘Now it’s part of our routine that he does everything like that for me.
‘I’ve learnt how to embrace how I am now and just do things how I need to do them.’
SAM CLEASBY AND TIMM CLEASBY
Sam Cleasby, 34, from Sheffield, suffers with inflammatory bowel disease. She had to wear an ostomy bag for a year and admitted that, for a time, it ‘rid me of my sexuality’.
But a sexy pin-up girl shoot with her photographer husband 43-year-old Timm and writing her blog So Bad Ass helped Sam to feel like herself again, despite her chronic condition.
And now the self-employed writer is on a mission to stop ‘poo from being taboo’.
‘I was diagnosed in 2003 – when Timm and I had been together for about five years.
‘It causes diarrhea and bleeding and a lot of pain. But I controlled that with medication for about ten years and then in 2013 I got very poorly.
‘The doctors couldn’t control it with medication anymore and I had to have an operation to remove my colon.
‘I had an ostomy – a lot of people know about a colostomy, which is a different thing – but it looks the same from the outside.
‘I had my ostomy for about a year, so I wore a bag on the outside of my body and that collected my waste. The biggest problem was it really effected my self-esteem and confidence.
‘I think there’s an idea that it’s something that old people have but I was 32 when I had my ostomy bag.
‘Timm and I had been together a long time and in some ways I think I was lucky about that because I didn’t have to figure out how to approach a new partner and how to talk to them about all this, but on the other hand it completely changed our roles in the relationship for a while.
‘He had to be my carer, and I think when you’re in the role of a sick person or a patient, it’s hard to feel like a sexual person.
‘For a time I did feel like the condition and the ostomy bag had rid me of my sexuality, which is a really difficult thing to live with as a woman.
‘In the early days it was very difficult. I told Timm if he wanted to leave me he could. I wanted to give him an out – he didn’t sign up for this.
‘We had to have some quite tough discussions about how I felt.
‘I think I was projecting a lot of my negative thoughts about myself onto Timm – I was assuming that he was not going to find me attractive anymore… I was assuming he would be disgusted by my ostomy bag.
‘When actually he was just concerned about seeing his wife in pain and he didn’t really know how to deal with this completely knew thing.
‘Timm’s a photographer and he suggested we do some photoshoots and that really boosted my confidence.
‘Beforehand I thought I was this huge ostomy bag with a tiny person behind it, and then I saw those pictures and realised it’s such a tiny part of you.
‘It made me realise I’m still the person I was before – I’ve just got a disability that changes things slightly.
‘I’ve had another surgery to reconnect things back inside so I now have what’s called a J pouch, so everything’s internal now – there’s nothing visible anymore.
‘Also I started writing my blog to document my journey but also to be there as a support for other people – I really wanted to stop ‘poo being taboo’ because it’s not something we like to talk about in public.
‘So I wrote things to get it out there because there’s a lot of younger people who live with ostomy bags.
‘I really thought just my friends and family would read it but very quickly I realised there was a huge audience of people looking for answehttp://www.dailymail.co.uk/embed/video/1219370.htmlrs and support and now by blog’s had more than two million viewers.
‘I’m quite honest on the blog and I do allude to the physical side of things but we’ve got three kids and our son’s 15, so I think if he read the ins and outs of our sex life he might kill us!
‘But I do talk about it a bit and I welcome other people to talk about it.
‘The biggest thing I always push with relationships is that when you’ve got something that’s such an embarrassing illness it’s really easy to close yourself off and become isolated, but the only way through that is to speak out and be honest.
‘So I really think people have the bravery to speak out because the more we do that, the more we can end the awkward.’
‘………..By Warwick Davis Actor and television presenter
Life’s been awkward since the moment, I was born.
The doctor came in and said to my dad, “Would you mind standing up?” My dad stood up. And he looked at him and he said, “You’re not unusually short, are you?” And my dad went, “No, why?” And the doctor just nodded and left. And as the doctor was leaving, my dad said, “Have I had a son or a daughter?” And he said, “Oh, I don’t know,” and he left the room.
Since then I’ve had my fair share of awkward moments.
At school, for example, my run up to the long jump was textbook. I took off, didn’t even make it as far as the sand. Then we’ve got the high jump – I couldn’t even get onto the crash mat. We also did the hurdles – or as I like to call it, the limbo! Then there was football, and I liked football, but the only problem was our football kit was black and white, so I was always mistaken for the ball and I’d spend most of my time running away from the other players.
As I got older, the awkwardness continued – especially in social situations. At a party, being only three foot six, I’m at everyone’s waist height. If you’re in a crowded room and everyone’s having drinks, all the conversations are taking place two or three feet above me. It’s very difficult for me to just walk into a group and become part of that conversation, because I’m just looking at hands and bums.
New video released by the disability charity Scope with Warwick Davis, reveals real life awkward moments that disabled people have experienced when out socialising, dating or at work. The film also features: Bad Education star Jack Binstead, Nic Hamilton, racing driver and brother of Formula 1 champion Lewis Hamilton, and many others.
In trying to do the right thing, people often crouch down to chat to me. I then crouch down as well, which is quite funny. Some people just sit on the floor and chat, and that is quite nice if you’re having a long conversation – it saves me looking up all the time and getting neck ache, and it’s nice to talk face to face.
Trying to do the right thing can get people tongue tied too.
I had somebody come round to measure up for a new patio. I said, “I wouldn’t mind a wall around the perimeter of the patio.” And he said “Oh, you mean a dwarf wall… I mean a short wall… I mean, er, a wall with just a few bricks.” He was trying to avoid saying anything to do with my height. I said, “Yeah, yeah, it is technically called a dwarf wall…”
Even for me, sometimes I don’t know what to say. I met somebody in hospital in a waiting room who had difficulty controlling his limbs. I started to chat to the guy, and I was a little bit anxious at first – I said, “I hope you don’t mind me asking but what condition do you have?”
He said, “I’ve got Parkinson’s.” Then he said, “What’s terrible is that a lot of people think I’m an alcoholic, they think I’m drunk.” People even questioned his mental capability. I had a fascinating conversation with him, and it really did make me think – he liked talking about it, and he’d rather talk about it because then nobody’s judging him through ignorance.
The more people try not to speak about someone’s disability or difference, the more they’ll end up stumbling – and it’s very obvious to that person what’s going on. And they won’t be offended! I don’t mind somebody acknowledging my height or talking about dwarfism. To be honest, if they’re curious or inquisitive, I’d rather we did chat about it.
Children are naturally very curious about the world, and often a child will spot me and be like, “Mummy, look, there’s a little person over there!” What I don’t like seeing is if the parent then chastises the child, because I think that gives the child a bad impression of that experience and they’ll grow up with that awkwardness. So I’ll try and quickly strike up a conversation with the child and the parent by going, “Hi, how’s it going? Are you shopping?” and talk about what they’re doing. I’ll say, “I’m Warwick” and give myself an identity to them – so I’m not just some ‘thing’, I’m a person, and I sound just like their parents do, and it’s okay.
I was in America just last week and this little girl came up and she went, “Are you real?” I went, “Yeah, yeah, I think so.” And then I heard her go off, “Mummy, mummy! He is real! I don’t know what she thought I might have been. She was at Disney World, so maybe she thought I was one of the animatronic characters, put in the pool for her amusement. Those sort of moments – I enjoy them, I don’t ever feel offended by them.
Without campaigns like End the Awkward, we will end up being unable to socialise with each other because nobody will want to offend anybody else and we’ll just stop talking. I’d rather people be really open and said what they feel as long as they’re not being offensive on purpose. Let’s talk about it!
I don’t mind if people ask questions about my height, so long as they’re polite. Again, more often than not it’s kids going, “Why is he short?”. I’ll say, “It’s genetics – the instructions that created me aren’t quite the same as the ones that created you, but the world is a diverse place”.
I do a bit of End the Awkward naturally myself in life! In the sense of just approaching my difference with humour, and hopefully making people feel at ease with it. I understand what it is like to feel awkward in situations and around people who are different, and I don’t want people feeling that way when they’re with me, so I just kind of approach it head-on.
Warwick Davis stars in Scope’s End the Awkward video, which aims to get people thinking differently about disability. For more information about Scope and the campaign, please visit http://www.scope.org.uk/awkward
Follow Warwick Davis on Twitter: www.twitter.com/WarwickADavis ……….’
The report The Other Care Crisis is published by Scope, Mencap, The National Autistic Society, Sense and Leonard Cheshire Disability. The leading disability charities are concerned that the debate about social care reform has focused on the needs of an ageing population and sidelined the thousands of disabled people under the age of 65 who rely on care in everyday life.
All persons should be able to expect a reasonable standard of living and a social life, while for most of us, this will be reliant on ourselves to fund all of this by gaining employment and then organising our spending budget accordingly.
But there are persons within all communities for whom this is impossible or extremely difficult. Here I am referring to persons with a disability for whom the prospects of employment are not possible, or can only be gained by some considerable effort. For many persons, their only or main knowledge or involvement with people with a disability, will be academics who are disabled like Stephen Hawkins or the athletes who are disabled like in the Para-Olympics.
But, I am afraid these people are in the minority, there are many disabled persons for whom, none of the above is possible, even some basic employment may not be possible. The only income these people with disabilities will have, come from State Benefits, provided they are lucky to live in a country which provides these benefits. I say lucky and perhaps, this is not the correct word, because no matter how it is reported in local and national media regarding benefit fraud, State Disability Benefits are not easy to obtain, especially in the current financial climate. Please also bear in mind that these benefits are only to provide a reasonable standard of living, what ever reasonable means. Is reasonable another way of saying standard or average?
The report mentioned above ‘The Other Care Crisis’ is focused on the situation in the UK, where the provision of these benefits are from Central Government agencies, mainly connected to the Department of Work and Pensions (DWP).
The current benefits are:
Disability Living Allowance (DLA) is a tax-free benefit for disabled children and adults – what you’ll get, eligibility, applying, Personal Independence Payment
Disability Living Allowance (DLA) is paid at different rates depending on how your disability affects you
Carer’s Allowance is money to help you look after someone who needs to be cared for – eligibility, apply, claim for DS700
Employment and Support Allowance (ESA) money if you can’t work because of illness or disability – rates, eligibility, apply, assessment
Access to Work is money to help you do your job if you have a disability or health condition – eligibility, how to apply
Attendance Allowance helps pay for your personal care if you’re older or disabled – rates, eligibility, apply, claim form AA1A
Apply to become an appointee for someone claiming benefits – how to apply, stop being an appointee
But DLA is for 16-64 years olds, to be replaced by Personal Independence Payment (PIP) from April 2013 for new claimants, with existing DLA claimants being contacted over the next 2-3 years.
But as stated above, if your only income is State Benefits and these are cut, this is bound to affect your standard of living. If, this was only reasonable to start with, then what will it be called. If reasonable is standard or average, then is this bringing the funding down to provide a sub-standard of living or below average?
If you feel this is unreasonable you can contact your MP by following the link
In addition to the State Benefits, a person with a disability may be entitled or may be in receipt of a care package from their Local Authority from funding provided by Central Government. This will be in the form of Direct Payments from a Personal Individualised Budget. An individual will be expected to make a contribution from their own income towards their budget. These Direct Payments are not additional general income, but are there to pay for the costs of care, which have been shown to be required from the Assessment of Need and the resulting Support Plan. The Assessment of Need will be undertaken by an assigned Social Worker and the Support Plan from information in the Assessment will be prepared by either the assigned Social Worker or an assigned Support Planner. The Support Planner could be either employed by the Local Authority or from an independent organisation.
But due to the current financial crisis in the World and especially the UK, all Local Authorities have been directed by Central Government to make savings from their spending. This is not only for this year, but from the last few years and also for some years to come. All persons in receipt of a service from a Local Authority are effected, not only those receiving benefits. So, not only could your sole income of State Benefits be cut, but Local Authorities will also be tightening their own eligibility criteria for entitlement to Direct Payments. This will further affect your standard of living.
Should this essential spending, even be subject to cuts?