» my story

Rewind radio: Today; Beyond Disability – Adventures of a Blue Badger; It’s My Story – The Long Walk; The Spirit of Schubert – review

Mark Glasgow — Sat, 31 Mar 2012 23:56:52 +0000

In a Today programme feature on the island of Sark, Sarah Montague teased out a powerful story of mystery and intimidation Today (Radio 4) | iPlayer Beyond Disability: Adventures of a Blue Badger (5 Live) | iPlayer It’s My Story: The Long Walk (Radio 4) | iPlayer Schubert (Radio 3) | iPlayer The Today programme is usually burbling away in the background as the Sawyer family enjoys a relaxed breakfast (baby poking spoons in her ears; six-year-old “doing” spelling while in vital final stages of solo Cornflake-eating race; Mr S checking football scores, managing toast production line; me in never-ending search for missing phone/sock/cup of half-drunk coffee). And the Today programme suits us fine, until it gets to the 8.10am interview

More here:
Rewind radio: Today; Beyond Disability – Adventures of a Blue Badger; It’s My Story – The Long Walk; The Spirit of Schubert – review

At Last; My Own Place.

Mark Glasgow — Mon, 23 Jan 2012 15:26:04 +0000

I’m enjoying ‘faffing’ in my ‘new house’. Doing what I want, when I want – great! I can’t believe it has really happened.

I have SMA Type two; I’m 45 and have just moved out of Mum & Dad’s. I had a great time living with my parents and although many of my friends have been living independently for years, I never really wanted to do it before. Looking back I was apprehensive and worried about not feeling comfortable with other PA’s – I`m a fussy bugger and felt that only my mum could do it ‘right’.

Then a flat became vacant with my local housing association just around the corner from my parents. I knew that I was not going to get anything more suitable and decided to have a look. Strange, but it’s an identical property as my mum and dad’s.

First impressions

I remember the first day I went to see it and how horrified I was. It was filthy, hadn’t been decorated in almost 20 years – just disgusting! I then began to see past the dirt and smells and discovered lots of potential. I knew it could be adapted, although I realised that it was going to be a big project.

I did have a few problems with social work, occupational therapists and direct payments and I started to get quite angry with them. When you know that you’re entitled to these things it makes you fight even harder and you become more determined to win. Perhaps I was just unlucky but I never found social work to be very supportive and they always seemed to display a ‘take it or leave it’ attitude which is sad I think, as they should be the very people pushing you forward into an independent life. Thankfully, I have friends with knowledge about independent living, so I knew what was available and what I am entitled to. I’m frightened to think about how you’d survive the social work department if you didn’t feel so confident. On the other hand, Glasgow Centre for Inclusive Living was fantastic: a wealth of knowledge!

The occupational therapist was also a bit more supportive and keen for me to get all the adaptations I required (wet room, adapted kitchen, ramp, lowered light switches, intercom and bathroom and bedroom ceiling hoists). The housing association were also great; I got a lovely new accessible fitted kitchen and they also worked with social work in fitting my wet room.

Working closely with contractors

I had the added advantage of working with City Building, the contractor for Glasgow Housing. I was able to work closely with them in adapting things specifically for me. Everyone has individual needs, not all wheelchair users are the same, so it’s important that you work closely with all tradesman to work everything out before it actually gets done. I probably drove them all mad. It was hard work but worth it to gain the freedom of having my own home.

I used to have nightmares about using a hoist. I absolutely hated the look of them and never wanted anyone else to see that I used one. Mum has lifted me all my life but I knew that because of the law my new PA couldn’t be expected to do the same. Would you believe that I now love my hoists? They’re so easy to work (I use the control button and my PA’s guide me) and I couldn’t care less who sees me.

I’ve been extremely lucky and found great PA’s which has made things a lot easier. Don’t be persuaded by social work to go along with council domestic care; fight for direct payments and have total control over your staff and the hours you want them to work. Write your own advert, do your own interviewing and along with consultation with GCIL then decide on your own requirements/conditions so that you are always the one in control. I had an initial problem with social work and contribution towards my care. I would have struggled to live had I paid the amount they wanted me to. This delayed things and I had to go to my local councillor who was brilliant. Within a week it had all been sorted out.

Making choices

I then had to start buying everything, arranging tradesman, choosing decor and agreeing adaptations. It was a crazy time and I was also working full time. Thankfully my employer was great and allowed me a bit of time away.

It then starts to take shape and gets very scary. For the six months that I’d had the house before I moved in, I’d seen it as ‘the project’ that someone else was doing. It was only on moving day that I realised this was it! Anyway, I did it and it’s all fantastic! I still sit on my own from time to time and have a good old cry. Strange really: I look around my house with all my nice new things. I love it. I soon got over it and to be honest I realised that there isn’t time to sit around blubbing what with so many things to do. I now love cooking and trying out new things, as well as having friends around. I love just pottering around, doing things at my own pace, when I want to do them.

I do miss Mum and Dad but see them most days (with our two Great Danes). They’re always there for me and I could never have done all this without them. They’ve always given me independence at the same time as making me well aware that they are here to support me which means everything.

Moving out is something I probably should have done many years ago. Now we’re all settled and both Mum and Dad know they don’t need to worry about me. They can see that my care staff are great. It also means less pressure for them as the years go on and they have more freedom.

I’ve got a new life that I love. Please don’t ever feel pressured into independent living but again don’t dismiss it. It is frightening (or maybe that’s just me) but you soon adjust to things. There is no one fussier than me, so trust me anyone can do it.

No disability living allowance for me. Nowhere to turn for many more | Sue Marsh

Mark Glasgow — Tue, 20 Dec 2011 17:12:23 +0000

Millions of us are living in terror of brown envelopes arriving from the Department for Work and Pensions I’m a disability campaigner.

My Story: Driving Ambition

Mark Glasgow — Wed, 06 Jul 2011 10:47:16 +0000

Ever since my father passed away a number of years ago, I have wanted to prove to people that I can learn to drive. I was told by many a professional that I would never have the ability, let alone the courage to get through the barriers that I would have to face.

I was brought up in a family surrounded by cars, bikes and machinery. My father was a driving instructor and also worked in the factories of Oxford’s thriving motor industry. Some of my fondest memories of my father were in the car. He would give me words of advice, talk car models and have great conversations.

When I left school, a neighbour gave me a three wheeled disabled car, a Robin Reliant. Sadly, I suffered a seizure having been free of them for many years. I was unable to take up his offer.

Long standing determination

I live with cerebral palsy, which severely limits the use of the right side of my body. I also have a long standing determination to overcome the odds. Twelve years ago, as well as my cerebral palsy affecting my right side, my left hand side was also badly affected after a neurological episode. I almost fully recovered but now use an outdoor powered wheelchair which I will be using to access my new adapted car once I pass my test.

After a practical test at the Regional Driving Assessment Centre in Eynsham, near Oxford, I completed my paperwork, health checks and a GP report, before the DVLA gave me my provisional licence, some 35 years later than when I first intended to learn.

Lessons from my father

The car I drive with my BSM Driving School instructor, David, who was taught by my father to drive, is incredibly well equipped and filled with gadgetry worthy of the best James Bond cars. The car has a left foot accelerator, automatic gearbox, a foot guard which stops my right leg from wandering and a steering ball on the wheel which allows me to steer one handed. To complete this, there is an infra-red control system which operates the wipers, lights, hazards and horn. I recently visited the driving centre to get advice about suitable cars and how to get in and out of the vehicle. I now have more research to do before deciding on a model of car and method of wheelchair access.

I always told my mother that my next vehicle would not be another wheelchair, but a car. I have photos and models scattered around my home which show my love of classic cars and motoring.

Theory into practise

I have had such good support in getting this far and now having recently passed my theory test, can’t wait for my practical test in April. David has been a very patient instructor and I’ve received strong support from the Oxfordshire Learning Disability NHS Trust. Without all the support, I’m not sure how far I would have got. The OT Assistant from the North Community Team for People with a Learning Disability spent hours with me in the library studying for my theory and I managed to pass without needing extra time.

A lot of the local charities have also been great in supporting me through my lessons with donations and money going towards my adapted car. I have even had my bronze lighter engraved saying: “Drive Forever Chris. First started learning to drive 17-06-10.” I have also arranged with David to go out on the motorway once I’ve passed and have had some experience of driving on my own.

For me driving will be a way of gaining so much more independence and freedom. Not only that, but every time I am out driving on the road it feels like my father is sitting beside me, encouraging me along. It feels wonderful. I only hope I can do my instructor, my family and my health support proud come test day next month! It will have been well worth the 35 year wait.

www.ridgeway.nhs.uk

Martin Amis: Only brain injury could make me write for children

Mark Glasgow — Wed, 23 Feb 2011 16:07:12 +0000

Remarks about children’s books made by Martin Amis on the BBC’s new book programme Faulks on Fiction, broadcast this week, have caused anger and offence among children’s writers.

“People ask me if I ever thought of writing a children’s book,” Amis said, in a sideways excursion from a chat about John Self, the antihero of his 1984 novel Money. “I say, ‘If I had a serious brain injury I might well write a children’s book’, but otherwise the idea of being conscious of who you’re directing the story to is anathema to me, because, in my view, fiction is freedom and any restraints on that are intolerable.”

See the article here:

Martin Amis: Only brain injury could make me write for children

The hidden battle of grandparent carers | Helen Collett

frank solomon — Tue, 18 Jan 2011 14:06:31 +0000

The growing number of UK grandparents who, like me, care full-time for children need more support from social services There are many reasons why grandparents might be raising their grandchildren: a relationship breakdown between the child’s parents, illness, addiction or violence. Whatever the reason, it is believed that around 200,000 grandparents in the UK are providing full-time care for their grandchildren. My story started back in 2001.

Read the original:
The hidden battle of grandparent carers | Helen Collett

My Story: Tim Rushby-Smith

editor — Thu, 01 Apr 2010 14:46:41 +0000

Three years ago an accident left Tim Rushby-Smith facing sudden disability – just as he was about to become a father for the first time. He explains how he learned to face the future head on and build a new life – as a man, a husband and a father.

On 1 April (no, really!) 2005, while working as a tree surgeon, I fell from a tree and broke my spine. The resulting spinal cord injury left me paraplegic. At the time of my accident, my wife Penny was five months pregnant. Many people thought this added an extra level of tragedy to our story but, after the initial shock, it gave us extra strength and determination – the clock was ticking.

The first 24 hours were very grim; being told the diagnosis and having to tell family and friends, along with the forced separation of the hospital environment. Penny and I ran a successful garden design and construction business. As well as having been married for eight years, we spent every working day together so the feeling of isolation we both felt was hard to cope with.

Two weeks later I was sent to the National Spinal Injuries Centre at Stoke Mandeville to begin my rehabilitation. After the chaos of a large general hospital, Stoke Mandeville felt calm and well organised. The staff were really supportive from the word go, saying: “Even if we have to push your bed to the maternity unit, we’ll make sure you’re at the birth!”

My rehabilitation was hard work, but I had a deadline. Determined to be completely self-caring, I pushed through the pain and made sure to find out as much information as I could. Learning the physical skills I would need was a good focus for my energy, although the psychological issues around coming to terms with my disability were much more difficult to deal with. To this day, I’m still not sure whether I’ve fully accepted the change in my life.

With the clock ticking, I stuck to my task. I was discharged from hospital on 22 July 2005 – exactly one week before our daughter was born. I was there at the birth and, because I experience almost constant neurological pain, it was a very long night for us both. But I wouldn’t have missed it for the world; the sense of relief and joy I felt when Rosalie was born was utterly overwhelming.

The next challenge was the long journey home. We had to find our way through the maze of bureaucracy that goes with the Disabled Facilities Grant and organise the building work that was needed. We kept a close eye on the details, as I was determined that our home shouldn’t look like a hospital.

We finally returned home 18 months after my accident and, two weeks later, we went to Australia to catch up with Penny’s family and to show off our new addition. The flights were relatively straightforward, especially as we were ushered to the front of every queue in the airports. I think the staff assumed we were ‘secret shoppers’ – after all, who in their right mind would travel with a baby and a wheelchair user?

The trip went a long way in helping me to rebuild my life in my head. I was finding out that all sorts of things could still be done – not just the long-haul flights, but going kayaking, getting on to beaches, feeding our passion for the great outdoors and simply hanging out with friends on the other side of the world.

Back home, I started to put together all my emails and a diary that I kept through my rehabilitation, with the idea of perhaps writing the book that so many friends had told me I should write. I managed to get a few thousand words together and was offered a contract by a publisher, which certainly helped my confidence!

I made a point of writing about all aspects of spinal cord injury, as I think there is a lack of understanding about what is involved, and I could sense a lot of questions around me that were never asked for fear of offending or being seen as insensitive.

The process of writing the book about our experiences – Looking Up – was cathartic for me. Some of it was very difficult to revisit, but it also enabled me to see how far I’d come in such a short time. Penny has been incredibly supportive throughout, and having her and Rosalie in my life makes me feel lucky every day. Now I hope that I can take my writing forward as a new career. Between that and being a dad, I’m pretty busy.

Fatherhood from a wheelchair has been a challenge, but as Rosalie has only ever known me in a wheelchair, we are learning together. It can be difficult watching her running around sometimes as I feel unable to move fast enough to catch her if she falls. But she’s pretty cautious, and I think every new parent has to go through something similar.

I spend a lot of time on the floor playing on her level, which is really rewarding and makes me practice getting back into my wheelchair regularly – something I worked hard on in hospital. My attitude is: “Figure out a way to do it and then decide if it’s worth the effort.” Most things can be achieved with enough practice. I have remained very active since my accident, playing wheelchair basketball and more recently tennis, as well as going to the Ability gym in Bow which is fully wheelchair accessible.

Having come this far, I would describe myself as “mostly happy”, and that’s a good thing to be able to say.

Looking Up: A Humorous and Unflinching Account of Learning to Live Again with Sudden Disability is published by Virgin Books at £7.99. ISBN-13: 978-0753513866

My Story: If You Fall…

editor — Thu, 01 Apr 2010 14:45:39 +0000

Back in 1993, a rock-climbing accident left Karen Darke paralysed from the chest down. Though the life she’d previously known had come to an end, time and the inspiration of friends and family – plus a lot of trial and error on her part – has led to a new meaningful and fulfilling life, as she continues to explain to audiences around the UK.

Adventure comes in many shapes and sizes. Once upon a time, learning to sit up in bed seemed to me the hardest challenge ever and, soon after, pushing myself along the street felt like a huge expedition. 15 years ago, with my body broken, hospitalised, I couldn’t have imagined the life of adventure that lay ahead. I lay there surrounded by insipid hospital walls, thinking of all the things I couldn’t do anymore, dreaming of the mountains I could no longer visit.

Nine months later, though, I was surrounded by breath-taking Alpine summits, their black and white slopes rising to jagged skylines. Thanks to spinal injury charity the Back-Up Trust, 14 wheelchair users were learning to ski – a slow, painful but exhilarating process. During that week I realised that I could never swap mountains for concrete, or the outdoors for indoors. Despite all the bruises, I came home thankful for the opportunity, and thirsty for more!

Like a child discovering the world again, I began exploring the options, from horse riding and gliding to canoeing and hand-cycling, gathering a collection of scuffs and bruises along the way. Little did I know then, that I would soon be cycling over the Himalayas, kayaking to Alaska, or considering scaling mountains once more.

“THE CRAZIEST IDEA…”

The most challenging physical adventure, though, lay 10 years ahead – sparked by a disastrous holiday in Lapland where I’d tried to cross-country ski. I’d struggled to push myself more than a few metres in the special sit ski, propelled with poles and brute force, and spent more time with my face in the snow than my skis. Unable to thermo-regulate, I had turned blue with cold while skiing, and shivered the evenings away hugging a hot water bottle.

Afterwards, my friend suggested: “Why don’t we try and ski across Greenland together?” It seemed the craziest idea ever, but the seed of the idea had been planted. In 2006, after two year’s preparation, six of us set out to ski a 600km traverse of the Greenland ice cap. This is a place ravaged by hurricane force winds, arctic temperatures, roving polar bears, and crevasses hundreds of metres deep. It still seemed a place too remote and too wild to contemplate; after all, in the spring of that year, the first three teams to attempt a crossing had all needed to be rescued, thanks to either injury, frostbite or the demoralisation that comes when you’re hit by temperatures as low as –36˚C, 200mph winds and the sheer magnitude of the distance to the other side! So, what chance did we have?

To make a successful crossing would require a team with the upmost strength, stamina and courage. I was fearful that we lacked this, and was worried about the cold and exposure, of the demands the challenge would place on my arms and shoulders – and the possibility of meeting a polar bear! I wondered about the sense in our efforts, and our team – a random mix of people including a 60 year old Polish car salesman, a climber who’d never been on skis, and myself, unable to walk or stay warm. Our team had never even met before we’d head into the icy desert, to share the highs and lows of seeing nothing but a white expanse for a month. Despite all my concerns, though, the attraction of an adventure – a journey with an unknown outcome – was just too compelling. It would be an escape from a world on wheels.

GREENLAND

We were met with a white horizon that seemed to stretch to infinity; it was so flat and expansive that we imagined we could see the curvature of the earth. We skied one behind the other, unable to converse, heads down, working hard, skiing in a straight line for nine hours each day. My fingers felt dizzy with exhaustion, every tendon pushed to its limit.

Initially we felt bored by the nothingness, but as the kilometres passed, it became more beautiful, more enchanting and you noticed how ice crystals changed shape and colour as the sun moved across the sky. Then the storm hit; a crazy wind, snow and ice hurtling at our tent – and our world was suddenly a panic of spades, frantic digging and other emergency measures. We had enough food and fuel with us to survive 35 days, but there were times when I wondered if we would make it across in that time!

A STATE OF MIND

Greenland was the journey of a lifetime, one which emphasised to me what is possible if we set our minds to it. I am constantly amazed by what becomes possible if we are prepared to challenge ourselves, to get out of our comfort zone and to believe that things are possible. Success is all the more likely if we can create a positive, supportive environment – one where we’re hearing Yes instead of No and, “You Can Do It,” rather than: “You’re Deluded!”

I’ve been lucky enough to have some great experiences, thanks to a lot of support, a big measure of belief, and possessing an “adventurous gene”, but my mind has been the thing that has nearly stopped me so many times. Someone once told me: “Disability is a state of mind, not a state of body.” I firmly believe that’s a notion that relates to us all, regardless of whether we have a physical disability or not; our own mind can be our biggest obstacle to living and achieving our wildest aspirations.

IF YOU FALL…

These days, people regularly ask Karen about her outdoor adventures, and how to get around some of the challenges of using a wheelchair. Between February and May, she’s taking to the stage with a UK tour. Her show – called “If You Fall…” – focuses on skiing across the Greenland icecap, and the enormous mental challenge of climbing the kilometre high overhanging rock face of El Capitan in the USA. She told us: “I hope the show will fire up my audiences’ own adventurous gene, and inspire them towards some of their own aspirations.”

At the time of writing, Karen’s tour includes the following venues. Check her website for additional dates as they’re added.

FEBRUARY

24: Halifax: Victoria Theatre:

01422 351 158

25: Salford: The Lowry Theatre:

0870 787 5780

26: Cardigan: Theatr Mwldan:

01239 621 200

28: Inverness: Eden Court Theatre:

01463 234 234

MARCH

03: Oban: H20 Centre:

01631 566 800

11: Poole: Lighthouse Theatre:

0844 406 8666

12: London: Imperial College: TBA

16: Kinlochleven: Kinlochleven Ice Centre: 01855 831 100

17: Drumnadrochit: Craigmonie Centre: 01456 459 224

19: Black Isle: Leisure Centre:

01381 621 252

26: Derby: Assembly Rooms:

01332 255 800

APRIL

23: Dunkeld: Birnam Arts Centre:

01350 727 674

MAY

07: Caernarfon: Galeri Caernarfon:

01286 685 250

FURTHER INFORMATION

www.karendarke.com

My Story: ‘I Knew I Had The Ability’

editor — Thu, 01 Apr 2010 14:44:37 +0000

Back in 1994, Michael Caines lost his right arm in a car accident. Two weeks later, the up and coming chef was back in the kitchen, as he explains to Laura Dunlop.

Michael Caines is a success. He may not be as “big” a name as Gordon Ramsay or Jamie Oliver, but the 39-year-old Executive Chef now stands on the cusp of a third Michelin star and has just opened the fourth of his stylish ABode hotels. He’s also the force behind the successful Michael Caines restaurants, the most famous of which is part of the prestigious Gidleigh Park country house hotel on the edge of Dartmoor – the sort of place where you’ll spend between £480 and £1,200 a night for a room!

Of course he’s pleased with all the awards and accolades that have come his way – including an MBE in 2006, an Honorary Doctorate and becoming AA Chef’s Chef of the Year in 2007 – but you do get the sense when talking to him that – apart from becoming a father – it’s his long love affair with food that continues to motivate him.

Michael’s paid his dues, of course. He initially learned his trade while growing up in a large family in Devon, where he would help bring the vegetables from the garden and help his mother prepare them. He then attended Exeter Catering College, where his natural talent in the kitchen earned him the accolade ‘Student of the Year’ in 1987. He subsequently spent 18 months at the Grosvenor House Hotel, Park Lane in London, before embarking on three influential years under the mentorship of Raymond Blanc. Michael went on to spend time in France, working under the guidance of such superstar chefs as the late Bernard Loiseau and Joël Robuchon. Today, despite his commitments to his hotel and restaurants, you’ll still find him in the kitchen whenever possible. “The kitchen is, without a doubt, the most grounding place to be,” he explains. “My motivation of creating great food, restaurants and businesses is my trade, which is dear to me.”

LOSING AN ARM

In 1994, he was in a car accident. “I fell asleep at the wheel, crashed and lost my right arm,” recalls Michael. “Initially, it was pretty bad and you go through days of thinking ‘Why me?’ and ‘If only…’. You mourn the loss of the arm, you grieve and you question your ability to go on at that point. But I was back part time at Gidleigh Park after two weeks and full time after four.

At least for Michael, the reason for this was simple enough. “I had no big insurance policy to fall back on and I thought that I was only going to find out how I could cope by getting straight back into the environment,” he says. “It was slow the first year but I regained 99.9% of what I was doing before.

“I had to rehabilitate myself into my surroundings using my new prosthetic arm,” he adds. “If I came up against a barrier, I just found a new route. I took small steps that made a big difference.”

LIFE’S PRETTY GOOD

Michael’s accident seemed to spur him on. “It never stopped my career,” he says. “I had never wanted it to hinder me or use my accident as an excuse or for people to feel sorry for me. I knew I had the ability and my pedigree was brilliant and that would shine through. You have to concentrate on surviving and slowly you regain your confidence. Persevere in life because you’ll look back and think – yeah, life’s pretty good. There are always people worse off than you.”

If he hadn’t become a chef, Michael believes he would’ve ended up either in the Army or – at the other end of the career spectrum – working in interior design or architecture. Indeed, he’s been able to explore his design ideas in his kitchens and restaurants.

So what does he think now of losing his arm? “I remember looking back thinking: This time last year I was able bodied, but I am coping so well now – look at my progress!” he explained. “As the years go by, your initial small steps turn into huge steps and you see how far you’ve come. It never stopped my career; I knew I had the ability.”

MORE: www.michaelcaines.com

MICHAEL CAINES: TIMELINE

1969: Born in Exeter.

1987: Voted “Student of the Year” at Exeter Catering College.

1988: Trains under Raymond Blanc, before moving to France for three years.

1994: Becomes Head Chef at Gidleigh Park. Two months into the job he loses his right arm in a car accident.

1999: Earns second Michelin star.

2000: Opens first Michael Caines Restaurant. Takes on food and beverage operations at Britain’s oldest hotel, The Royal Clarence in Exeter..

2001: Voted Chef of the Year at prestigious Cateys Awards.

2003: With Andrew Brownsword, Michael buys the Royal Clarence – the first ABode Hotel.

2006: Awarded MBE for services to the hospitality industry; takes part in BBC Two’s Great British Menu chef competition for the honour of cooking for the Queen’s 80th birthday.

2007: AA Chef’s Chef of the Year.

My Story: Belinda Hollowood

editor — Thu, 01 Apr 2010 14:41:10 +0000

Belinda Hollowood hasn’t let Turner Syndrome – a chromosome condition that affects only women and invariably leads to short stature and infertility – stop her from enjoying life.

I was born on Boxing Day, 1962 in a small nursing home in Bilston, near Wolverhampton. I was diagnosed with Turner Syndrome at birth, but did not find out myself until I was 18. I’ve been lucky in that, other than a loss of hearing, weak bones (I have plates on all four bones in my forearms after four breaks), short stature and being unable to have children, I am fit and healthy. There are many other complications that I have escaped.

There was some bullying at school, as children soon picked up on the fact that I was “different”, but that is true for many children. At work I have been lucky and find ways of getting things done rather than letting it stop me from doing them. In the main, I am reticent to request extra support or privileges, but my employers at Openreach – part of BT – are very understanding when approached. I have a telephone that is compatible with my hearing aid’s loop system, and it’s never a problem when I take time for hospital visits to check up on my ears, the regular blood tests to check my liver & hormone levels or my yearly visit to the consultant who specialises in Turner’s Syndrome. I really appreciate this and try to deal with whatever comes up without ducking out.

Because my parents divorced, I lived with my paternal grandparents from the age of two. I suppose I did realise that was unusual but, as I was happy and had all the support and love I could want, I never saw it as an issue. I don’t now have any real need to see my other relations – my biological mother, her other children – because I have always been happy and content. I am quite introverted and would need to be confident that the approach would be welcomed before I would attempt it.

The death of my grandmother was a very difficult challenge as we had always been so close. I decided that to sit and feel sorry for myself was not the way I had been brought up, but I should find ways of keeping busy. I have three cousins with small children who I see regularly and derive a great deal of pleasure from, seeing them grow up. I also visit my aunt – my Nan’s daughter – and uncle on their farm a lot. We were both with her when Nan died and have a great bond.

I like to feel useful and helpful and don’t give up on things just because they are difficult. For example it took me years and many driving tests in order to pass, but I kept battling on. I see challenges like that as goals and the feeling when you achieve them makes it all worthwhile.

I work full time at Openreach, where I enjoy the camaraderie and making a difference for people. I’m an assistant Beaver Leader, spend time in my garden and greenhouse, and attend aqua-aerobics. I also attend a cookery class and go on organized short local walks. I own a dog named Tess who demands as much attention as I can give her. Plus, I visit family and friends. I recently completed my BA Hons in Business Studies and am working through my scout training at the moment.

I like to think that I will always try new things or develop my skills, such as taking a photography course to make the most of my new digital camera! At work I would like to take on new challenges, particularly in the exciting area of new technology. For the future, I would also like to visit new places, successfully finish my Scout training and take a more active part in the movement.

My Story: Ems Coombes

editor — Thu, 01 Apr 2010 14:40:02 +0000

Plymouth-based Ems Coombes was hoping for a special birthday present in June – the launch of her new multi-ability theatre company, Strictly Collaborative.

I had a stroke when I was 17 and, as a teenager, found I was given little support; when I came out of hospital, there wasn’t anything. I didn’t know what was happening to me and for six or seven years, even though I used a walking stick, I denied that I was disabled.

Having always been interested in drama, I was determined to work in the sector, but it was only when I got involved with the Priory in Totnes and saw them using drama to help integrate 19 people with physical or learning disabilities back into the community, that I began to understand what I was meant to be doing. That’s when I realised there was a niche for me; before that I didn’t really know what it was to be disabled, or even if it was possible to be a disabled person in the arts world. I spent the last part of my time at Dartington College of Arts researching what it was to be a disabled person in the arts world, and to see what there was out there.

There is little provision for disabled people in Plymouth to express themselves creatively, which is certainly frustrating for people like me. It’s difficult particularly for young disabled people and it’s a shame that non-disabled people aren’t benefiting from working with disabled people too. By the nature of their experiences, disabled people have something different to offer which sadly is being overlooked.

I went to the Barbican Theatre in Plymouth with my CV to see what I could do with them. They said that I needed to have one really good, really strong idea, and then they could possibly help me. So I went away and came up with Strictly Collaborative, and they really liked it. I’ve been working on this for a year and a half to two years and I’ve done most of it on my own. We’ve had problems with funding – thankfully, the Big Lottery Fund has awarded us some cash – and it didn’t help that I had to go into hospital, but the aim is to launch it officially on 29 June – one day after my 30th birthday. I’m quite excited by that!

The idea of Strictly Collaborative is made obvious in the name; I’m not so much in charge of a theatre group as a facilitator for those taking part. The aim is to work with young people aged 13 to 19 through a workshop programme on various themes. The first will be themed ‘a Place for Belonging’; it’s about, basically, what makes you feel warm and fuzzy inside – the things, places or people that you treasure. Members of the group will create and perform a play stemming from their autobiographical experiences. Individuals will be encouraged to come up with the ideas and are involved in the project each step of the way, from its conception to a final performance at the end of each series of weekly workshops. All of us collaboratively decide where the workshops will go.

The hardest thing about setting Strictly Collaborative up is that I’m working mainly on my own; because I have no funding, I can’t get an administrator in, which would be fantastic, to be honest. I’m doing this on my own, which is really difficult when I’m – for lack of a better word – “floopy”.

Nevertheless, I believe this is an amazing possibility to do some fantastic work, to show non-disabled – and also disabled people who don’t know about disability art – what they’re capable off. I believe that if people can see that disabled people are not just there to be pitied, it’ll give some ‘Oomph!’ to our lives!

For more information on Strictly Collaborative, call Ems Coombes on 07917 276 254, email ems@strictlycollaborative.co.uk This e-mail address is being protected from spambots. You need JavaScript enabled to view it or visit www.strictlycollaborative.co.uk.