Category Archives: Real life stories

Living Costs: My Disability Shopping List

A guest blog by Martyn Sibley

I have been what is known as “disabled” my whole life. Oh, how we love labels! I have a genetic condition called Spinal Muscular Atrophy, which means I’m about as physically useful as a chocolate teapot.

On top of this potentially dire situation, let’s look at my disability shopping list:

  • Accessible housing: Very difficult to find, never cheap and usually requiring ramps and adapted bathrooms/kitchen after moving in.
  • Equipment: Electric bed (for comfort and pressure sores), electric wheelchair (for independent mobility), a hoist (to lift me), shower chair on wheels (to not smell), kitchen gadgets (a Kettle tipper, for example), and much more.
  • Social care: The recruitment, training and salary costs of employing people for my independent living needs. Tasks include; dressing me, personal hygiene, house chores, using the toilet, going to work, seeing friends and turning me at night. Plus their additional costs when on shift (food, accommodation, travel, leisure).
  • Health: Physiotherapy and swimming are very important. Prescriptions for antibiotics are required more than average in winter.
  • Other living costs: Higher utility bills to stop winter colds, charge electric equipment and for higher water usage. Costs of servicing equipment. Accessible transport is often more expensive than inaccessible options (see London’s tube map). Accessible holidays have a higher mark up too.

I could go on and on…

Funding

Fortunately, parts of this are covered by government funds. I get support in certain areas because I’m more “disabled” than average, because I understand my rights, and in some ways because I’m “lucky” with the postcode lottery we play.

If anyone narrow minded goes crazy to you about the costs of disabled people on the government, please tell them this: Unless death or social isolation is your thing, investing in us is not just right, but also better for everyone.

From being independent we are healthier and happier, saving future costs of hospital admissions and GP time. We can work, spend our money in the economy, contribute tax and share our skills/knowledge/experience for others to use. We also employ people with the social care money who also spend in the economy, pay tax and are valuable assets to society.

Despite the government funded support, there is a lot of costs not covered. Granted the Disability Living Allowance is in recognition of our extra costs. Unfortunately the maths still shows that we struggle to break even. And when we do succeed, the system takes it back again.

Other costs

For me there are mental and emotional costs of all the bureaucracy too. The form filling, meetings, reassessments, employment responsibilities, silly rules, threats of budget cuts and actual cuts. All on top of trying to just live a “normal” life.

Finishing on a positive note

Beyond the social stereotypes we face, and partly because of the support I have; I attended mainstream school, had non-disabled and disabled friends, did everything my family did, went to university, got drunk, lost my virginity, learnt to drive, graduated, worked in Human Resources and as a fundraiser for Scope for 6 years, went onto co-run Disability Horizons, travel the world and change it in my own little way.

On the one hand I hope my experience shows what is possible with the rightful funding, resilience, and a positive attitude. Equally I want to show the unnecessarily difficult reality of being disabled in 2014. Furthermore the possible regression we are facing going forward with policy suggestions. Only next year am I given big fears, doubts and worries about my personal finances and disability support package once the Independent Living Fund closes.

I’d love to hear about your life ambitions, hurdles you’ve overcome, your higher costs of disability, and achievements despite the struggle.

Martyn

What are your experiences of extra costs? Let us know in the comments below or find out about the Extra Costs Commission.

The top ten misconceptions about visual impairment

Guest post from  Emily Davison, a writer, fashion blogger, English Literature student  and YouTuber. She also happens to be visually impaired and works with a guide dog.

Emily with her guide dog Unity
Emily with Unity (photo from Guide Dogs)

Do you ever face those moments in your day where something cringe-worthy happens to you? Do you find yourself thinking how wonderful it would be if the ground would swallow you up?

In life I find that there have been many obstacles that I have had to face. But, one thing that never seems to vanish are the questions I get due to my disability. Some of them are the most awkward and frustrating moments I can recollect. Some make me want to recoil in sheer mortification.

Recently I created a video on my YouTube channel after reading an article by a young women in a wheelchair about the top ten sayings and questions that she gets due to her disability. It inspired me to relate my own version about visually impairments. Scope invited me to discuss my views on these misconceptions right here on the Scope blog.

1. “Won’t glasses help?”

I get this a lot when first meeting people and after what seems to be an eternal age of hearing it, I feel that it is time to set the record straight:

I am not a martyr. If I can improve my life in any way – I do.

But, alas the problem lies not in the eye but in the optic nerve and for me, as with many people with sight loss, glasses do not help. In short, if glasses did help me I would certainly be wearing them.

2. “Are you training that guide dog?”

There seems to be a misconception surrounding guide dog owners and the way that they mobilise in society.

Having switched from using a long cane to a guide dog, my walking speed and posture has changed an awful lot and I now walk in a confident manner and with purpose.  If a person with a guide dog walks confidently and ‘not like the stereotypical blind person’ this does not mean they must be a guide dog trainer!

3. “How long have you been blind?”

One of the biggest stereotypes around sight loss is that everyone who uses a long cane or a guide dog must have no vision whatsoever. One person with a guide dog may be fully blind, another may have some remaining vision like myself. I would always advise that when you discuss the topic of sight loss with a guide dog owner or long cane user that you use the term ‘visually impaired’ as it a more accurate representation of sight loss.

4. “You’re so normal!”

This comment, in my opinion, appears to imply that people with sight loss or other disabilities are less than ‘normal’.

Everyone is different. There is no such thing as a normal person. Disability is one small part of a person and should not be used to classify their place society.

5. “But you’re looking straight at me?”

Different individuals have different levels of vision, one person may be able to read print, whilst another may be able to see color. Some people with sight loss may be able to give you eye contact, or at least use their hearing to look in the direction of where your voice is coming from. Never presume that sight loss is all in black and white, because there are many different shades in the spectrum!

6. “She’s blind! I’ve got a chance to pull her!”

This is one of the more uncouth sayings I get in social situations such as the pub or a restaurant.

Some people think that my sight loss will increase their chances to ‘pull’. In the past this has shattered my confidence and made me recoil from dating situations. My sight loss should not be used as an advantage for other people to exploit.  Disability as a whole is something that is misunderstood when it comes to dating situations and that is why I praise Scope for including dating as a key aspect of their End The Awkward campaign.

7. “I don’t know how you do it!”

As a writer, my thesis on life is to experience as much of the world and people within it as possible. Meet new people, experience different cultures and live for every second. Time affects us all, disabled people included, and I believe that it is imperative to design your life in the way you wish and to gain autonomy over yourself. The comment of ‘I don’t know how you do it’ suggests that every disabled person is an isolated person afraid to live their life.

Never let any part of yourself hold you back, you are in charge of your disability, it is not in charge of you.

8. “You’re so trendy! You don’t look blind!”

I am still shocked by the amount of people who pass this comment with a look of incredulity on their face about how my dress sense amazes them.

Having sight loss does not have to affect a person’s relationship to fashion or style. Style is a form of expression and it depends on passion and imagination and not on your level of vision. As a visually impaired person I appreciate clothes from the fabrics and embroidery used, to the outline of the garment and how it makes me feel when I wear it. I interact with style based on a number of different senses. There are many different visually impaired people, who appreciate clothes for their shape, quality and attention to detail.

After all, fashion is a creative outlet and is not exclusive to one set of individuals.

9. “How does your guide dog know the bus numbers?”

Whenever I hear this comment I want to laugh until my sides are sore. Instead, I simply bite down hard on my tongue to keep in in place and politely inform the individual that a guide dog can only do certain things. Guide dogs do not have the power to talk or read, they follow instructions from the owner and help them to mobilise and get on and off public transport. The owner has to have full knowledge of the route they intend to take and the dog will act as the car.

10. “She’s so pretty! It’s such a shame she’s disabled!”

This is occasionally followed by the slightly more mumbled comment of “what a waste”. When I hear this my tongue takes on a life of its own and sets the world to right! My appearance is not ruined by the fact that my eyes do not work in the same manner as the majority.

I speak to everyone who reads this and considers themselves disabled. Your disability is not a shame and as so long as you are happy in the skin you are in, never allow anyone to convince you that it is!

You can read more on my thoughts and opinions on the topic of disability, style and identity by following me on the links below. Everyone is welcome on my social campaign to rid the world of its misconceptions of not just sight loss but disability in general. Come and join me, have your say and let’s make a change for good!

I also appear on RNIB’s Insight radio at 2.15 pm every Friday.

From my wheelchair I’ve seen humanity at its greatest – #100days100stories

Justin Skeesuck was the first person in a wheelchair to complete the entire Camino Frances, a 500 mile trek across northern Spain. Unable to use his legs or arms, the 38-year-old could not have completed the journey without his best friend Patrick, or the help of many strangers. Scope’s Campaigns and Communications Officer met the best friends while walking the Camino. We’re republishing the story here as part of our 100 days, 100 stories campaign

The back of Patrick pushing Justin along a road

The sun was scorching as I trudged up a steep road with vineyards and valleys on either side. Up ahead I could see some fellow pilgrims, who were moving a bit slower than I was. When I reached them I could see why – one man was in a large off-road wheelchair and the other was pushing him.

Pilgrims helping Justin up a rocky path
Getting up a steep path with the help of fellow pilgrims

Patrick and Justin asked if I’d pull one of the wheelchair’s handles to help get them over the hill. Just this little bit of extra help made a big difference to the visible strain Patrick was under. The road turned into an uphill dirt path strewn with large rocks – so the tactics changed.

I strapped myself into a harness to help pull the wheelchair from the front, while Patrick pushed. We moved along like this for the next hour or so, manoeuvring around large rocks and stopping every couple of minutes so Patrick could rest, and drink or eat something to keep going – he was burning around 10,000 calories a day.

The call to adventure

For more than 1,000 years pilgrims have made the journey through the Pyrenees in France and across Spain to reach the Cathedral of Santiago de Compostela in Galicia. In medieval times the Camino was an important Christian pilgrimage. Today, hundreds of thousands of people make the journey each year for a range of reasons.

Justin was inspired to do the Camino after watching a travel show about the route: “Something inside kind of said this is something I should try, and wouldn’t that be crazy to do in my wheelchair?”
Justin taped the programme, and a few weeks later showed it to Patrick, who said “I’ll push you”.

It took a year for the friends to plan the journey. They had a special wheelchair made and sent over from Canada, and Patrick trained intensely in the gym to prepare to push his friend 500 miles.

Justin and Patrick by a 100km road mark
Justin and Patrick with just 100 kilometres of the Camino to go

Justin’s story

Justin has a a rare progressive autoimmune / neuromuscular disease called multifocal acquired motor axonopathy – known as MAMA for short. Justin was an athletic 16-year-old when a car accident triggered the disease, which had been dormant in his body. About eight months after the accident, his left foot started flopping around while playing football.

“It just kept getting worse as months went on; then years went on”, Justin explains. “My foot started flopping around a lot more, (then) I started having weakness in my left leg.”

“By the time I got to college, (the disease) had jumped to my right foot, and I was wearing what are called ‘drop foot braces’ – they helped keep me vertical, so I wore them for many years. And it pretty much stayed to my waist and below, and then I got married and started having children.”

As the disease progressed, Justin added a cane, a walker and eventually needed a manual wheelchair to get around. Four years ago Justin was just getting used to his chair, when the disease jumped to his right shoulder. In just 40 days it spread down his right arm, then down his left: “I lost about 60-70 per cent of my arm strength, and that’s when my life really changed”.

A dark place

Justin, his wife and three kids at the Colosseum in Rome
Justin and his family on holiday in Rome

“I’m really a half glass full guy. I tend to enjoy life as much as possible, but that was the first time in my life where it was not where I wanted to go. Fortunately I didn’t go there.

“I decided that OK, if this is the way my life is going to be, then I’m gonna make the best of it.”

Justin had been a graphic designer for many years, but losing the use of his arms spurred a career change to become a disability travel consultant

He’s travelled extensively with his wife and three kids, even moving the family to Italy for three months last year. But the Camino has been a different kind of challenge.

Learning to let go

“When you travel with a disability you end up wanting to control things quite a bit – or at least know your parameters”, says Justin.

“But in this case it’s completely the opposite.”

“Working together with Patrick as a unit, I’ve learned a lot about letting go and seeing where the path takes me, and not being so controlled.

“I don’t even know where I’m staying every night, I’ve got no idea if I’ll fit, and I’ve no idea where I’m going to eat. I have no bathroom commode. I have no extra wheelchair for difficult spaces. It’s just me, my bag, and this off-road wheelchair. So I’ve learned a lot about seeing where life takes you if you’re open to it.

“It’s one thing to see your best friend day after day, inch after inch, mile after mile, just slugging to get you from point A to point B.

“But to meet people from all over the world who are just willing to come in and say ‘yeah I’ll push you for a mile or two’ or whatever they want to do, it’s humbling. Some people just come in like a flash in the pan, they’ll help me get up this (hill), and off they’ll go. And some people will stay with us for a week or two.

“It’s truly amazing to see it from the seat that I’m in, to see humanity at its greatest. If you open your heart and your mind and your soul to letting other people in, even for a brief moment, it’s truly amazing.”

The end of The Way

Patrick hugs Justin outside the Cathedral de Santiago
At the end of the Camino

Justin and Patrick completed the 500 mile Camino in 35 days, and were greeted at the Cathedral de Santiago by their wives and a huge group of pilgrims they’d met along the way.

Justin and Patrick are raising money to fund the production of a documentary about their journey

And check out Justin’s tips for disabled travellers.

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

“I love exploring the world with my son”

Last November, Marie and her husband Dan became proud parents of baby Mark. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging. But the new family are finding inventive ways to enjoy time together.

Mark is now seven months and is developing fast. It has been amazing seeing him flourish and the satisfaction of knowing Dan and I are doing a great job is incredible. He is now onto three solid meals a day, plus his milk of course. He seems to enjoy everything that is put in front of him, but banana and broccoli are definitely his two favourites!

Marie feeding seven-month-old Mark in a park
Marie and Mark enjoying their local park

It is still very difficult that I can no longer physically lift Mark. He is now a third of my body weight and sitting down we are the same height! Even though we always knew this day would come, I sometimes wish he was a tiny baby again so I could relive being able to carry him.

We are, however, getting inventive and starting to see our local area in a whole new light. Our local play park has baby swings, which the designers have accidently put at the perfect height for me to push and play with Mark! He giggles and grins his head off the whole time. It is also really nice to be at eye level with him in such a care free ‘natural’ environment. Needless to say, this is now on our regular walking route!

Milton Keynes was clearly designed with all young families in mind, including ours. We have a comprehensive cycle network, separate from the roads, and you can guess what this means: complete safe level access, city wide.

To make the most of this, I have just got hold of a frankly awesome, new power chair. Provided by the local Wheelchair Service, it took a considerable amount of fighting and battling to get but it was worth it in the end. The new wheelchair can go up to eight miles an hour, which means once Mark is on his feet, and especially on his bike, we can have a brilliant time exploring the area as a family.

My new chair also allows me greater freedom around the home and is enabling me to do things faster, which comes in handy when Mark wants his breakfast! Mark loves the new wheelchair too, using the lights as a homing beacon if I am in it while he’s in his walker.

Dan and I are finding different and amazing ways to play with Mark together as a family. Mark’s favourite game at the moment is for us to sit at opposite ends of our 15 metre laminate hallway, while he runs between us in his walker, laughing his head off. Just that simple act of him running towards me on the floor, mouth agape, giggling like mad is enough to melt anyone’s heart!

We are now planning more adventures, trips away and places to visit, while life goes on in general. We are still completely overwhelmed by the positive attitudes we see and even complete strangers simply adore our little family.

Marie is blogging about being a disabled mum for Scope, and has been raising awareness by talking to Sunday People, That’s Life! magazine and Disability Horizons

Paying extra to live my life – Jean’s story

Jean is 34 and has Ehlers-Danlos syndrome, which means her joints dislocate easily and she is in a lot of pain.

“I came home from work one day, fell over, was taken to hospital because I couldn’t get back up. I came out of hospital a week later in a wheelchair,” she says.

Jean, who lives in London, wants to get on and live her life – and for the seven years since she was diagnosed she has been trying to do just that. But she faces a huge range of extra costs relating to her condition, leaving her out of pocket.

Many of them aren’t obvious. Things like adapted cutlery and kitchen equipment are vastly more expensive than an ordinary set.

“I am supposed to have specialist knives to help me with preparing veg and things like that – with the handle at a 45 degree angle – but they are about £15 a blade. They are not covered by the NHS, you have to pay for them yourself, and we can’t afford them.”

Jean is a careful budgeter, tracking what she spends down to the penny. But she can’t scrimp on the things she needs or it can take a big toll.

“I have to eat a particular diet because my condition affects my gastric system, and if I am not very careful with what I eat then my gastric system will start going downhill. Our shopping bill comes to about £120 a week.”

“We had a situation a couple of years ago where we were living on essentially £50 a week, so we were buying the really, really cheap basic stuff. We managed to make sure we had enough to fill us but I was really ill. I was bed-bound for a year because I was having so many problems with my stomach and lower back and with pain in my hips and my pelvis. I couldn’t move.”

Jean has all kinds of other costs.

Some are really big. For example, Jean gets a basic wheelchair provided for her – but she really needs an ergonomic one to reduce stress on her joints, which is very expensive.

“You expect that any equipment you need you get from the NHS, you get for free, but you only get the very basics,” she says.

“I will be looking at around £1,200 to £1,500 to be able to get a wheelchair that suits my needs, and we can’t afford that at the moment.”

Others are more everyday costs, but still important. A trip into central London with her fiancé, Mike, via a wheelchair-accessible route costs an extra £6 every time.

“People think that because you are disabled you shouldn’t be allowed to have a normal life – to do the same things that they do. I’m just trying to have a normal life.”

Help us do something about the extra costs facing disabled people – join Scope’s extra costs campaign now.

“So great you’re getting out the house” – Tips for traveling as a disabled person

Guest blog from TV presenter and campaigner, Sophie Morgan.

Sophie skingEarlier this year, I flew to Italy with an organisation called Disability Snowport UK. The plan was for us all to meet at Gatwick airport a few hours ahead of check in time so we would avoid any unnecessary and often unavoidable dramas that could arise when flying with so many different access requirements and special needs.

I arrived at the terminal on time and quickly spotted the group who were huddled by a cafe chatting; given that there were six wheelchair users on the trip it was hard to miss us! I wheeled over and introduced myself to everyone, before turning to go and buy a cup of tea.

“Morning love”, said the chirpy girl who took my order. “Where are you lot off to then?”

“We’re going to Italy,” I explained. “To learn to ski.”

She paused as she poured the hot water, “ahh, isn’t that nice!” She smiled down at me. “So great you’re getting out the house.”

I took my tea and returned the group. Six happy, independent, adventurous and fun loving young disabled people all smiled at me as I took my place amongst them but I didn’t smile back; I was angry.

What was it about a group of disabled people being together that brought out the ignorance in people? Why did that lady presume we didn’t get out the house much? Especially when in the past six months I have been getting out the house a lot! Travelling to New Zealand, Australia (three times), Cambodia, Malaysia, Morocco, Scotland and France to name a few! In fact, I had probably been to Gatwick nearly as many times as she has working there! So why did I suddenly feel I was no longer an individual, I was just a stereotype?

Sophie at the costThe reason I tell this story is because it is not uncommon and it is certainly not acceptable. Whether I travel by plane, train or automobile, it seems there invariably always comes a point when a problem with either attitude or access arises.

The more I travel – and I am actually writing this from seat 44D on Cathay Pacific flight from Hong Kong to London – the more I am noticing that it is often the attitudinal barriers that are making me feel more restricted, not just the physical ones.

So, where do we start?

One of the major inhibitors of change in the UK of course is money. The disability policies of these travel companies don’t seem to think we are worth adapting for, we aren’t valued enough. And it’s this word that I think is key. What is our value?

Instead of airlines, train companies and taxi firms thinking of meeting our needs purely from a corporate responsibility perspective, being morally and politically correct, what if they thought of our demographic’s spending power, or so-called Purple Pound, which is an estimated £80 billion. Yes, eighty. Billion. If they built it, we would come!

We have to show the travel industries that a change in their attitude will make a change to our lives.  It is up to us to be the change we want to see!

On that note, I want to recommend a few things which have helped me over the past decade of traveling as a disabled person.

Get advice. Thankfully websites like Euan’s Guide (which Professor Stephen Hawking endorses) and the brilliant Blue Badge Style offer some invaluable advice, and there are always people online to ask for tips and pointers like myself and others.

Plan for the worst and hope for the best. I often expect to be treated poorly at airports for example, as then when I’m not, it’s a bonus! I was once poked in the legs continuously by a group of curious Indian security women because they didn’t believe I was paralysed, accordingly I missed my flight. I also had to be fireman’s lifted onto a flight in Nairobi once as there was no ambi-lift.

Don’t settle for anything less. I really think this is where we can make waves. We MUST complain, speak up or express ourselves when we have experienced discrimination. Be it to your local taxi firm, council, MP, media outlet or friend, if we don’t talk about the problems we are all facing on a day to day basis then nothing will be done. The Equality Advisory and Support Service (EASS) will also advise you on your rights via their helpline: 0808 800 0082

The world is yours. Everyone has the right to travel, to see the world and follow their hearts, and where there is a will there is a way, or as my mum says, ‘where there is a wheel there is a way!’ Please don’t let fear get in the way; all of these horror stories can be overcome with enough planning, guidance and a good sense of humour.

And if anyone ever needs any advice or just someone to rant to please get in touch via my website . I would love to help if I can, that is of course if I’m not too busy yelling at a poor unsuspecting taxi man or confused looking air stewardess about my rights!

Happy travels and good luck.

Sophie shares some of her experiences in our End The Awkward films.

“With music there is no barrier” #100Days100Stories

We first shared the story of Truth, a young rapper with cerebral palsy, in July 2014.  We’re republishing it here as part of our 100 Days, 100 Stories project.

Truth is a 23 year old rapper, songwriter and producer from New Jersey. He moved to the UK at the age of 12. By the age of 14, he had began writing and recording his own music. His debut album is released on 10 August and tells the story of his life not only as a struggling rapper but as a disabled man.

Hi guys, I’m Truth and I have cerebral palsy, however, that isn’t what defines me. There’s more to me than that. I make music and by this I don’t mean I’m in a marching band. My weapon of choice is the microphone and I try to use it to tell stories, to entertain and to evoke emotion. Some of the songs I make can be seen as controversial but that depends on how you listen to them.

The majority of my songs are about what happens to me and people like myself on a daily basis. Things which, in my opinion, seem to be glossed over. Shop and club owners using health and safety law to take away our sense of humanity and equality. People asking how we have sex and people refusing to give us job opportunities.

Young disabled people don’t really have a voice in popular music and society doesn’t really know how to accommodate us. Where do you send a 21 year old that just wants to get out and do something with their life?

Music is my escape. With music there is no barrier. There is only one requirement: can you bring it?

My album entitled ‘Don’t Diss my Ability’ comes out 10 August and will be independently produced and released by myself. I want to ask people to buy it because I think the message needs to be heard and I will use any proceeds from it to fund a UK live music tour where I can really allow society to see things from our perspective.

If you’d like to know more about me and the music please visit:

Find out more about 100 Days, 100 Stories and read the rest of the stories so far.

The disabled footballing icon who won two World Cups

Guest post by Amit Sharma, Associate Director of Graeae.

I’m a massive football fan. I’ve been in love with the beautiful game since I was about seven years old. I’ve played for my primary school in competitions, with my mates in the park, and support the greatest team in the world – Liverpool Football Club (although I’m yet to play on the hallowed Anfield turf!). I was also quite fond of Argentina as a national team, not least because of Maradona, and the ever growing battle between him and Pele to be named the greatest ever footballer. However, there’s always been a player who gets missed off the list when it comes to discussing the best. A man who played alongside Pele and when both played in the same team neither ever lost a game. A two time World Cup winner who almost single-handedly won Brazil the title in 1962. Nominated in FIFA’s Team of the 20th Century, and whose name sits above the home dressing room in The Maracana, the most famous stadium in the world: Manuel Francisco dos Santos – better known as Garrincha.

When I became Associate Director of Graeae I wanted to look into creating a show that would be cross- culturally specific to Rio and the UK as they are hosting the Olympics and Paralympics after London in 2016. Graeae haven’t done a sporty type of show before and I was trying to rack my brain to see who might fit the bill. I then had my eureka moment and thought of Garrincha.

Garrincha
Garrincha

I’d come across Garrincha a long time ago when watching a documentary. The pictures were black and white, grainy, and the clips of him on the football field didn’t last long. There was mention of him having ‘funny legs’ but nothing more than that. What I didn’t realise was how complex a character Garrincha was.

Born in the outskirts of Rio, Garrincha had a right leg that turned inwards and a left leg that turned outwards and when given a football he became a genius. Off the field, his life was turbulent. Garrincha’s relationship with Elza Soares, a famous samba singer, proved captivating and he was an alcoholic which eventually took his life at the age of 49.

Garrincha playing football
Garrincha (left) during the World Cup 1962

I’ve never known of any disabled footballing icons. I’ve never known of any disabled icons who have won World Cups. I’ve never known of any disabled icons that are revered as he is in Brazil where he is affectionately known as ‘The Angel With Bent Legs’. I had the privilege of going to Rio last year and whenever I mentioned that I was planning to do a theatrical performance of his life people were excited and wowed. The goodwill was overwhelming. The highlight of the trip was having the opportunity to meet two of his daughters and to get their approval to do the show.

What I want to do is to open the door for the world to know a little more about this charismatic character. Knowing what I do now about Garrincha I would have loved to have said his name whilst dribbling passed my friends. A footballer with a similar mobility impairment to mine who won two world cups. How cool would it have been to imagine you were Garrincha alongside Pele and Maradona?

Hopefully with this show it’ll inspire the next generation to become their own Garrinchas.

Graeae is a disabled-led theatre company which breaks down barriers, challenges preconceptions and boldly places Deaf and disabled artists centre stage.

“He was so keen to help, he ended up breaking the wheelchair ramp at 2am…”

Guest post by Martyn Sibley, blogger, campaigner and co-founder of Disability Horizons magazine. Martyn has spinal muscular atrophy and uses a motorised wheelchair. He spends much of his time travelling the globe and is currently spending three months in Spain.

I find awkwardness comes in a few different forms. Some people are very wary around disabled people, and often people don’t engage with you at all because they’re afraid they might do or saMartyn next to the seay the wrong thing.

In social settings, however – especially where there’s a bit of alcohol involved – people tend to become over-helpful, and you get a lot of unwanted attention. One (rather drunk) guy was so keen to help me onto the bus at the end of a night that he ended up breaking the wheelchair ramp at 2am. Everyone on the bus had to get off and wait half an hour for the next bus, which was very awkward for everyone, and me especially.

Or people will accidentally be patronising, saying things like ‘It’s great to see you out…’ I’ve had a few nights out where someone has tried to take me under their wing as a kind of Good Samaritan, even though I don’t need help and am clearly enjoying myself with friends.

Process barriers

Some of the awkwardness comes from what you might call ‘process barriers’. If I can’t get onto a bus or train because the ramp isn’t working, or there aren’t enough staff to operate it, that’s not the fault of my impairment – it’s the fault of the process that’s been put in place.

I travel a lot, and normally when I’m taking a plane, I’ll get on before the other passengers. However, often the airline doesn’t pull its finger out, and I’ll end up being carried onto the plane andMartyn on a train wheeled down the aisle with everyone watching. Because I can’t hold my head up without support, I look different from when I’m settled in my chair, and it gives completely the wrong impression of me. It’s embarrassing for me – and what’s more, it reinforces the impression that disabled people are ‘different’ in some way. And that means people will keep feeling awkward.

Ending the awkward

I’ve been on a bit of a journey over the course of my life in how I feel about awkwardness. When I was younger, I hated any kind of special attention – now, I’ve realised that sometimes it can lead to genuinely interesting conversations, and new connections.

Disabled people have a part to play too in ending the awkward. It’s about accepting that sometimes some people feel awkward, and being confident enough in your own skin to defuse their embarrassment. I try never to take offence where offence isn’t intended, and humour is a great coMartyn looking out to seaping strategy.

And I’ve found that just being out there and living life to the full is the best way of educating people about disability. Going out, getting drunk, having fun, pulling doughnuts on the dance floor in my wheelchair – it’s a good way of breaking down those barriers without even trying.

Find out more about Martyn on his website.

No limits, and no excuses – World’s Strongest Disabled Man Competitor

Gary Clarke, who has cerebral palsy and is a support worker for people with learning difficulties, is competing in the World’s Strongest Disabled Man Competition.

In 2011 I was euphoric to hear from a friend on Facebook that there was a World’s Strongest Disabled Man competition. Having been a fan of strongman since the days of Geoff Capes and Jón Páll Sigmarsson. I can still hear cries of “I am a Viking” to this day.

I remember saying to my grandmother at the time “one day I’ll be doing this”.

I heard there was a local strongman training camp and trained there for a few years until it closed in 2014. Under the watchful eye of Phil Diamond, I entered various strongman competitions. My first demonstration was in 2011 where I took part in the Chase Charity Competition in Guildford, where I pulled a six ton truck, hand over hand, and lifted a car axle for repetitions.

I took part in another charity truck pull event along Paighton sea front, this event was truly spectacular. There were two choices of which truck to pull – a five ton tracker unit (the cab of a truck)or an 18 ton truck, I pulled the tracker unit twice with ease, the guy running the event said “I think that’s enough for you today.” To which I replied “you’re having a laugh mate I have come all this way I want to have a go at the 18 ton.”

I pulled the truck from start to finish, at the end of the pull the organizer said to me he’d never seen anything like that before in 20 years of Strongman. Bearing in mind I had never before attempted a truck pull of this sort I didn’t think it was a bad effort, also I was the only person to finish, and the only person there with a physical impairment. The crowd went wild and the atmosphere was electric, people were even stopping me in the street afterwards and congratulating me on the achievement.

I then flew out to Iceland to compete for the first time in the Worlds Strongest Disabled Man competition. The event consists of six events over two days:

  • The truck pull – stationed at the top of a hill in a harnessed down wheelchair I had to pull a 4×4 up the hill, this was by far the toughest event of the competition.
  • The log lift – 75kg on an incline bench for repetitions
  • The Hercules hold – 80kg each hand on a pulley system, holding on for time , this felt like true torture !
  • The loading race
  • The crucifix hold – 10kg swords in each hand for maximum time
  • The atlas stones ranging from 30-90kg in weight!

I was reasonably satisfied with my debut performance, considering I had not had much chance to practice specifically for the events at the time. I also got the opportunity to meet Magnus ver Magnusson the four time winner of the World’s Strongest Man competition, co-organizer of the event and Strongman icon. This experience was quite surreal as Magnus was somebody I had admired for years and suddenly I was being collected from the airport by him, brilliant!

2014 is my fourth time competing in the World’s Strongest Disabled Man competition

The build up this year has been unique because I have had the privilege to be coached by Laurence Shailai who has won Britain’s Strongest Man twice and competed in the World’s Strongest Man competitions. Laurence pushes me hard and gives me good solid advice on all the events and aspects and training, thanks Loz!

I am fortunate to be sponsored for the Iceland event by Impey Showers. Big thanks to them for their ongoing support.

I have high ambitions to start up a Britain’s Strongest Disabled Man competition next year.

I am living my dream, living proof that regardless of any impairment or disability you may have you can achieve anything you put your mind to. Who would have thought I would be able to pull an 18 ton truck 25 meters?

Watch this space for updates on how I do in Iceland, I will continue to push the boundaries on what I can achieve.