All posts by jpudelekscope

My job at Goldman Sachs is a holiday compared to the pressure of the Paralympics

Five-time gold medallist Sophie Christiansen is competing in her fourth Paralympic Games this summer. The equestrian won three of her gold medals at London 2012 with her horse Janeiro 6 so expectations for Rio are high.

In this guest blog post, Sophie, who has cerebral palsy, talks about witnessing first-hand the growth of the Paralympic movement and how she handles the pressures of competing at a top level.

My family isn’t at all horsey. I don’t think I would ever have ridden if I hadn’t been disabled.

I started riding when I was six with the Riding for the Disabled Association to improve my coordination. When I was about 13 I found out about dressage and I was hooked. When I’m on a horse I can forget about my disability and I can compete on a level playing field with other disabled people.

The riding school where I learnt dressage, South Bucks RDA, had a history of training Paralympians so they were looking out for talent from the start.

Being selected for Athens in 2004, aged 16, was incredible. I was ParalympicGB’s youngest athlete. I learnt such a lot from that first experience of the games.

To be selected for my fourth Paralympics this year is a huge honour. I’m only 28, but I’m seen as a Paralympic veteran!

Changing attitudes

The Games have changed so much since my first time in Athens. The standard is so high and there is a lot more interest.

We’d be used to competing in front of 200 people – that would be a big crowd – but then in London there were 10,000.

In Beijing there was a lot of interest from the public and we attracted a really big audience. But there was so little media coverage. I won my first Paralympic gold medals and it hardly got a mention.

I think attitudes have changed. There was a lot expected of London in terms of changing perceptions and I think it did achieve it, to a certain extent. It showed disabled people achieving some amazing things and I think people who aren’t disabled were inspired by what we could do.

But I know a lot of disabled people felt it did not represent them and I totally understand that. It’s why I make it my mission to talk about my life outside sport, about the barriers that still exist in society, whenever possible.

Road to Rio

I’m really looking forward to Rio and I hope people get behind us. It will be a shame if they don’t manage to sell tickets and the stadiums are empty. But as an athlete, you just have to get on with it and focus on your event.

It would be great to see more coverage of disability sports. At the moment there’s the Paralympics every four years and then nothing in between. I think it would help disabled athletes get more sponsorship and make disabled people more visible. If people can’t see disabled people, they just don’t exist.

Relaxing with maths

I work as an analyst at the investment bank Goldman Sachs in the technology department. This might sounds funny, but I see my job as like a holiday from the highly pressurised atmosphere of Paralympic sport.

I’ve always had a logical brain and I love maths.

They’ve created the perfect role for me, which fits around my impairment and my sport commitments. I know it’ll be hard for me to progress in my career while I’m doing dressage, which is frustrating. But everyone I work with is so understanding. It would help support a lot more disabled people into work if more employers were as creative and flexible with roles as mine.

When training in a Paralympic year, it’s about knowing how to balance training with fatigue. It’s difficult because I’m a workaholic, I’m always working. That’s my biggest challenge, knowing when to stop.

Pushing myself outside my comfort zone is how I’ve always lived my life. I never thought I’d have a job in London. I enjoy the independence it gives me and it enables me to pursue dressage.

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We’ve published the findings of a new poll which asked disabled people whether the Paralympics can change attitudes to disability and asked what life is like if you’re disabled in 2016. Read more about our Parlympics survey

Visit the ParalympicsGB website for more information.

Do the Paralympics have the power to improve attitudes to disability?

With just days before the action kicks off in Rio, we’re publishing the findings of a new poll which asked disabled people whether the Paralympics can change attitudes to disability and asked what life is like if you’re disabled in 2016.

Our new research shows disabled people overwhelmingly believe the Games are an opportunity to change perceptions of disability.

We surveyed over 1000 disabled people and more than three quarters (78%) say the Paralympics improve attitudes and four in five (82%) say the Games change negative assumptions to disability.

We know London 2012 achieved this and more by increasing the visibility of disabled people and celebrating Paralympians as sporting equals.

So it’s been incredibly disappointing to hear reports from Rio that the Paralympics are subject to budget cuts and athletes face competing in near-empty stadiums.

We hope the organisers can address these issues and ensure the Games are a success.

What’s happening in Rio, including suggestions that money intended for the Paralympics was spent on renovations to the Olympic village, shows there’s still a long way to go in changing attitudes to disabled people.

A closer look at the polling

As a closer look at our new polling shows, the long-term positive impact of the Paralympics is far less certain. Four years on from the huge success of London 2012 disabled people continue to face negative attitudes.

Just one fifth (19%) of disabled people think Britain is a better place to be disabled than four years ago.

The stats show little or no improvement across key areas of disabled people’s everyday lives:

Text reads: 82% of disabled people believe the Paralympics make disabled people more visible in wider society
82% of disabled people believe the Paralympics make disabled people more visible in wider society
Text reads: 78% of disabled people say the Paralympics have a positive impact on attitudes to disability
78% of disabled people say the Paralympics have a positive impact on attitudes to disability
Text reads: Less than a quarter think that the accessibility of pubs, restaurants, clubs and shops has improved (23%), or transport (21%)
Less than a quarter think that the accessibility of pubs, restaurants, clubs and shops has improved (23%), or transport (21%)
Text reads: Nearly 80% of disabled people say there has been no change in the way people act towards them
Nearly 80% of disabled people say there has been no change in the way people act towards them
Text reads: Disabled people continue to face huge barriers to work with just 15% saying employer attitudes have improved since London 2012.
Disabled people continue to face huge barriers to work with just 15% saying employer attitudes have improved since London 2012.
Text reads: Just one fifth (19%) of disabled people think Britain is a better place to be disabled than four years ago
Just one fifth (19%) of disabled people think Britain is a better place to be disabled than four years ago

You can’t change attitudes in a fortnight

Through campaigns like End the Awkward, and by sending disabled role models into schools to talk about their experiences and training the next generation of disabled campaigners, we’re working to improve understanding of disability across society.

We’re working with government to ensure that the support and opportunities are available to enable disabled people to fulfil their aspirations.

To create lasting change, disabled people must be more visible in the media and in public life. Not just every four years, but all of the time. 

Scope celebrates 100 days until the Paralympics with #30towatch

It’s 100 days to go until the Rio 2016 Paralympics Games.

Scope is celebrating by throwing a spotlight on ‘the ones to watch’ – 30 extraordinary disabled people under 30.

These up-and-coming stars are our #30towatch.

With breakout sporting talent, creative entrepreneurs and innovators, actors and rap artists – the list showcases the disabled stars of the future.

London 2012 changed attitudes to disability and celebrated Paralympians as sporting equals.

But four years on, Scope polling shows that a staggering 76% of disabled 18-35 year olds say they are treated differently because they are disabled. The research shows that of those:

  • Just over a third (36%) said people seem uncomfortable and don’t know how to talk to them
  • A third (33%) said people patronise them because they are disabled.

Previous Scope research shows that millennials are twice as likely as older people to feel awkward around disabled people. And one-fifth of 18-34 year olds have actually avoided talking to a disabled person because they weren’t sure how to communicate.

Rio 2016 is an opportunity to talk about disability, challenge attitudes and increase understanding about what life is like for disabled people today.

We’re sharing blogs, films and images from our #30towatch throughout June, and bringing their experiences and expertise into the real world with Twitter takeovers and live Facebook Q&As.

Check out our blog for stories from a whole host of different disabled people from all walks of life who are doing the most extraordinary things. Some of our #30toWatch stories include:

  • Nicholas McCarthy who defied all odds to become the only one-handed pianist to graduate from the Royal College of Music in its 130 year history.
  • Scope supporter, blogger and businesswoman Kelly Perks-Bevington who has just bought a football club. She has plans to turn it into the most accessible club in the country.
  • Holby City star Jules Robertson who has beaten the stigma and attitudes around autism to become a show regular.
  • Natasha Coates, a disabled gymnast who is literally allergic to exercise. She has fought hard to win numerous British titles and is a firm favourite among the gymnastics community.
  • Powerchair footballer Chris Gordon who will be representing England in the World Cup next year.

To stay up to date with these amazing stories, make sure you keep checking out our 30 Under 30 hub page every day throughout June.

“The best way to challenge people’s attitudes by is getting out and doing things” – Gary Clarke

Britain’s Disabled Strongman competition returns this year and promises to be bigger and better than its successful launch in 2015. In this guest blog, organiser and strongman competitor Gary Clarke, who has cerebral palsy and is a support worker, talks about changing attitudes through action.

It’s a great year for disability sport. We’ve had the Invictus Games and the Rio Paralympics are later this summer. In the middle is Britain’s Disabled Strongman competition this Saturday (28 May).

In 2015, I fulfilled a long-time ambition of mine to set up a disabled strongman competition in the UK.  I’ve wanted to organise an event like this since taking part in my first competition back in 2011.

It’s a killer event that culminates with the atlas stone – lifting weights of up to 90kg between oil drums – which is a huge demonstration of strength and courage. I love that it all came from my determination to bring the games to the UK. That makes me very proud.

Disabled strongman preparing to lift the atlas stone
Competitor preparing to lift Atlas stone

Spirit of the Paralympics

I always look forward to watching the Paralympics. The strongman competition is very fresh and raw right now, but I think it’s on par with the Paralympics. The determination these guys have and the willpower to win – it’s the same spirit as the Paralympians. They’re doing it for the sheer enjoyment and thrill of winning.

Setting up the strongman competition is the best thing I’ve ever done to change attitudes and get people to think positively about disability.

People are going to take a step back and think wow; this guy is pulling a four tonne truck and lifting an atlas stone. How many people would think disabled people would be capable of doing that? The best way to challenge people attitudes is by getting out and doing things.

There are no limits, no excuses

I think some disabled people end up believing they can’t do things because that’s what they’ve been told. This competition proves that disabled people can do these very physical challenges and that events can be adapted.

The more people who tell me I can’t do something, the more determined I am to do it. Bringing disabled strongman to the UK was one of those things and I feel really privileged to have done it.

My inspiration is Arnar Már Jónsson, who started the disabled strongman movement in Iceland, where it has been running for 15 years. He was a pioneer and has made all subsequent events possible.

For this year’s competition on Saturday, we have double the number of competitors with 21 disabled athletes taking part in six events, and we’re expecting hundreds of spectators.  Last year we only had a seated class to include wheelchair users. We’ve added a standing class so that people with different impairments can compete on a more level playing field. We’re also lucky to be holding the event at the Strongman Sanctuary in Kent, where the whole team has been hugely supportive.

  • Britain’s Disabled Strongman competition is taking place at the Strongman Sanctuary in Kent on Saturday (23 May) from 10.30. Visit the event Facebook page for more information.

 

X is for X-rated #EndTheAwkward

Spinal cord injuries and other impairments can affect the way people feel aroused and reach orgasm. Broadcaster and journalist Mik Scarlet is unable to get an erection after a spinal injury in his teens. He explains how this has led him to explore alternative erogenous zones, multiple orgasms and no end of X-rated fun…

X for X-rated is part of Scope’s A to Z of sex and disability. This blog contains frank information about sex. It’s meant for people over the age of 16, so please only continue if you are 16 or older.

Sex is so much more than the method for making babies. It should be fun, exciting and a great way of bonding with a partner, whether they are the love of your life, your current squeeze or a one night stand.

It’s this element of their sex life that many spinal injured people feel they have lost, especially early on when they are learning to live with their injury.

But trust me – nothing could be further from the truth.

If you’ve lost the ability to gain erections, but can still feel aroused, then with a little effort you will find that you can achieve multiple orgasms. It transpires that it is the erectile system that prevents men enjoying sex in the way women can, and once you experience this you tend to not miss a ‘hard-on’ in quite the same way.

For those who have lost sensation, there is now a growing group of therapists and disabled people, myself included, that are promoting various ways of turning the erogenous zones on the parts you can feel into orgasmic zones, which opens up a whole new world of sexuality.

There are many differing techniques so it might be worth trying a few to see which suits you. But trust me; it really is possible to orgasm even if you are paralysed from the neck down.

Sure, sex after a spinal injury will be different than it was before, but with the right attitude, support and partner it can be better.

When I incurred my spinal injury I thought my sex life was over, but nothing could beat the sex I have now. A lot of that is due to my injury and how it made me re-examine what it means to have sex.

• Read Mik’s article about sex and spinal injuries in full at Pos’ability magazine.  

In this video, Mik reveals how to create orgasmic erogenous zones anywhere on your body and how to enjoy “thought orgasms” by conjuring up your sexiest, X-rated fantasies.

• This video first appeared on the Wellcome Trust’s blog, Mosaic.

K is for Kama Sutra #EndtheAwkward

No matter the disability. There’ll always be a position that brings that a smile to both your faces.

Many consider the Kama Sutra to be the Bible of sex. But disabled people are bringing these ancient positions into the 20th century. Whether you like to flip upside down, do it doggy-style or reverse like a cow girl – everyone has their favourite. And Romina Puma, a comedian who has muscular dystrophy, is no different. In this video, she reveals the ins and outs on how to get jiggy with it Kama Sutra style.

This blog contains frank information about sex. It’s meant for people over the age of 16, please only continue if you are 16 or older.

K is for Kama Sutra is part of Scope’s A to Z of sex and disability. This blog contains frank information about sex. It’s meant for people over the age of 16, please only continue if you are 16 or older.

Disabled people have sex and do it in different positions just like everyone else. One day it dawned on me that I’d never seen a Kama Sutra for disabled people – and why not?

Luckily, Google had the answer. I found a Kama Sutra poster for disabled people anDSCF1376-edit_halfd took it to the stage – well the softcore version anyway!

Don’t get me wrong there are some limitations with the poster – it’s designed for male wheelchair-users for a start. A few times in my set I’ve loved inviting male audience members up on stage, to sit in my wheelchair and try out a few of the positions with me. It can be fun but it depends on what kind of an audience you have!

Initially, it was just something fun to put in the act but after experimenting with it on stage, I thought it would be great to try out some of the positions… But I soon realised it was much easier just to go to bed – I guess I’m just a creature of comfort!

Know what you like

For me personally, I know what kind of positions I like and which ones I can perform in for longer with my impairment. Just because you’re disabled it doesn’t mean that part of your life is over. I can have sex normally. Obviously, I don’t have the strength to do certain positions for a long time – but who does?

Sex is awkward for everyone – so it’s important to be open with your partner. If they understand how to pleasure you, it will help avoid people feeling awkward.

I’ve done research to understand how other disabled people with different impairments have sex to get some tips about positions and aids, such as using pillows to make things more comfortable.

But it’s not only your partner who needs to be open-minded. It’s so important to know your own body– and your limits too. Once you know this, then you can play around. It’s always nice to be able to explore and try.

It’s the same for people who aren’t disabled – there may be certain things they like and other things they don’t like. There has to be a connection with someone, where you can talk freely – like “do this”, “go there”, “do that” – give some directions here and there.

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Changing perceptions

In my shows I try and change people’s perceptions on sex and disability as much as I can. I’m still waiting for someone to help me try all the positions in the Kama Sutra. But can you believe it – I haven’t had any takers yet!

Please share Romina’s blog using the buttons below. And check out the next letter in our A to Z of sex and disability – L is for Lips.

You can watch Romina’s saucy set at the Backyard Club in Bethnal Green, East London, on Sunday 8 November at 3.30pm.

“We searched the world for a miracle, but we found the answer at home”

Guest post from Reza Ataie, a volunteer befriender who runs our Face 2 Face dads’ group in Brighton. He’s sharing his story for Fathers’ Day in support of our Brighton fundraising appeal – we need to raise £120,000 to keep the service running for another three years.

My twins Nikki and Sara, who turned 18 recently, have severe autism and learning difficulties, they also have sleep problems and seizures.

Our children are a handful and a joy. Our life revolves around them, and we can’t imagine not having them for a minute. For our family the glass is always half full, and we’re always happy for the small things.

But when Nikki and Sara were very young, we went through a difficult time.  Even a lot of professionals didn’t know much about autism, and we felt very isolated.

We had a different style of living when the twins were born. I was chief executive of an international company; I travelled a lot and I had a teaching post. I now work in a different role, and I’m very lucky because I can work reduced hours and from home, but my earnings have reduced considerably as a result.

Searching the world for answers

We have videos of Nikki and Sara from their first birthday and they were talking, communicating. But then suddenly, almost overnight, their development turned back.

With the realisation of what was happening to the twins, my wife had to give up her job and eventually I had to stop too. It came to the point where I realised I couldn’t carry on – the sleep deprivation was tremendous.

When they were diagnosed, my wife and I started looking for a miracle. We started doing a lot of research into autism ‘treatment’, and this took hold of our lives.

As a parent, the most difficult thing is to accept and come to terms with your child’s condition. You hope it’s temporary. Autism is a lifelong condition, but we were fighting with every ounce of energy not to accept that.

We travelled a lot – from Russia to America, we went anywhere research was being done.

Finally, when the twins were nearly seven, our fantastic GP called us – he was the only person who knew everything we had been doing. He asked, “Are you tired out? Have you done enough?”

We looked at each other and said “Yes. We’re ready to accept it.”

Getting our lives back together

The first step was to start getting a routine back. We found the right school for the girls, and that was a major turning point. They started settling down and learning in their own ways.

We’ve always done charity work, and I got introduced to a local support group for parents of disabled children. When I started working with them, I realised what a difficult time we’d gone through and what it must still be like for younger parents.

I met Amanda Mortensen, whose daughter Livvy has autism and severe learning difficulties, and she told me about Scope’s Face 2 Face befriending service in Brighton, which she manages.

I did the befriender training course with Scope, and it was fantastic. There were 12 of us, but I was the only dad!

Starting a dads’ group

After the training, Amanda had difficulty finding a dad for me to work with. They tended to be a bit more reserved, and found it difficult to open up.

So I suggested we start a group just for dads. My reasoning was that if it’s difficult to get fathers talking one to one, maybe going to the pub as a group and having a drink would help.

Eight dads showed up for our first meeting in January 2014, and then word spread – we have 32 dads on our contact list now, and we’ve had up to 22 people come to each meeting. A running group has started on Saturdays, and people meet up socially with their families. I’m still amazed about how easy we have found it to talk to each other.

Fathers can feel very isolated – often they feel they can’t talk as freely about their problems. The group gives us a sense of belonging.

Can you support our appeal to keep Brighton’s vital Face 2 Face service running? Find out more about the service and the parents it supports. 

I was fighting to stay in work – #100days100stories

Jacqueline picGuest post by Jacqueline, who turned to her entrepreneurial skills after being forced to leave her job due to a fluctuating condition. But she’s still fighting for the support she needs to fulfil her work ambitions. She shares her story as part of our 100 days, 100 stories campaign.

I have always been interested in reducing inequalities. It surfaces at times when I see something that just isn’t right and suddenly I find myself challenging what is happening and developing ways to improve it.

This impulse led me to my first experience of being an entrepreneur. Actually it was the second – my first was selling old toys at the end of the path when I was little.

I had seen how disabled children were being denied equal access to play and childcare. So I developed and managed an inclusive play and childcare scheme for Bolton. It was built on the principle of the social model of disability so that disabled children had the same access to play and childcare as other children.

A dream role

This all led to what was a dream role for me – working as access and inclusion manager for Bolton Council. It involved rolling the model I’d developed out across the borough and eventually around the country. It involved speaking at conferences, sitting on national advisory boards and developing national policy guidelines.

I was at the height of my career and enjoying every moment of bringing significant and long-term change to this area. But my world came tumbling down when I started to experience some frightening changes in my health, which was later diagnosed as Fibromyalgia.

Fibromyalgia is a fluctuating condition that affects around one in 20 people in the UK. There’s no cure and it affects everyone differently.

My mobility is affected which means it takes me a while to get going in the mornings. I find my mind is ready but my body isn’t. It’s as if someone has pulled my plug out – my energy levels just drop and I have to stop what I am doing.  I experience chronic pain and fatigue, IBS and disturbed sleep. I didn’t realise at first that not managing the symptoms results in cognitive dysfunction – the harder I pushed back against them, the worse it became.

Fighting to stay in work

I was also fighting to stay in work. My employers were refusing to meet the recommendations made through Access to Work, a scheme that provides funding for workplace adaptations, specialist equipment and transport. After an 18 month battle that ended in a tribunal, the process was taking its toll on my health and I felt there was no option but to resign.

I suddenly found myself moving from a secure job and a good salary to incapacity benefit.

During this time I set up a local support group for people who were in similar circumstances. I also tried to get back into mainstream employment. But the interviews were a disaster. It seemed understood that you might need reasonable adjustments once you had the job, but not in the process itself.

Like me, other members of the support group were having problems staying in work and finding other positions when they lost their jobs. I turned my efforts to developing a workforce retention programme to support our members to stay in work. I had quite a lot of success particularly with Sainsbury’s and the NHS.

Access to Work for entrepreneurs

I decided the only way forward for me was to become self-employed. I found gaining support through Access to Work involved substantially more assessments and questioning about my condition. The scheme didn’t seem to understand entrepreneurship, or chronic and fluctuating conditions.

However, I was eventually awarded the support I needed and was able to enjoy a successful working life once more. I developed an inclusive entrepreneur programme aimed at introducing people who face barriers to mainstream employment, to the possibilities of starting their own businesses. I also launched a social enterprise called the Inclusive Entrepreneur Foundation.

Unfortunately my health deteriorated due to complications following a routine operation. After further battling, I was able to get the support I needed to continue working through Access to Work. But the recent restructure of the scheme has now led to the total loss of my award.

The fight continues

I’ve appealed the decision and have been an active campaigner in highlighting the impact changes to the scheme are having on disabled people. If I’m not successful in the appeal, I will be forced to close my business and return to what I believe is now termed Employment and Support Allowance.

For too many disabled people there are barriers to entering, staying in, and progressing in work. Scope’s new report out today shows the economic impact of enabling one million more disabled people to enter work by 2030. 

Find out more about our 100 days, 100 stories campaign and read the rest of the stories so far.