6 minute read
never I’ll never forget day forget day
had to change plans due to poor accessibility
Powerchair user Euan MacDonald, founder of the guide, said: “Businesses are undervaluing disabled people both in terms of social inclusion and spending power ”
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Euan set up the guide in 2013 with his sister, Kiki, after he was diagnosed with motor neurone disease He said: “We encourage disabled people to review the places they visit on EuansGuide com and use the website to find first-hand experiences of disabled access at venues across the UK and beyond
“Likewise, if you work at a venue, please promote your disabled access information in your own communications and by listing on our guide for free ”
JOHN PAFFATT’s life changed completely at 16 when he was told he had a few months to live or have the whole of his right leg amputated to rid me of cancer
The good news, he says, was he was still alive: The bad, was he now had to readjust to being disabled
GROWING up in the 60s, I loved sports and was in both the school football and cricket teams
Then, when I was 11 and during a football match, I had the most excruciating pain in the right side of my groin
The pain periodically returned and after several visits to our local doctor, I was referred to an orthopaedic consultant, who said the sensation was psychological, and that I was simply trying to get out of school
When I was 15, I had a biopsy on the area It showed nothing untoward, but I knew deep down something was not right I had experienced four years of shooting pains in my groin, and they were getting progressively worse
By the time I reached 16, a sarcoma had been discovered in my thigh All I understood was an operation was necessary to remove it – not the seriousness of it It was a strange feeling to be vindicated, quite irrational knowing I was right and the consultant wrong
So, just five months into my apprenticeship as a gas fitter, doctors operated but failed to remove all the cancer
Despair
Shortly afterwards my parents were told I only had four to six months to live
They shared the brunt of this because I was not told I had the disease
I can only imagine the pain and despair for them now as a parent now myself, because when your child hurts so do you The cancer was eating away at me With no appetite, I weighed only six and half stone (41 kilos) Three weeks later, after being examined by two specialists, my parents were told there was a 50/50 chance I would survive if I had my whole right leg removed
After seeing the family doctor, who said “If it was my son, I would let him die rather than go through the operation”, they initially said no But after a heartwrenching and painful talk with my consultant, they left the decision to me
I will never forget the day they returned from seeing him at the hospital and tearfully told me: “They want to amputate your leg ”
It was like receiving an electric shock I had no idea what to do, but after the initial trauma, I chose the possibility of life over the certainty of death
For me, it was an obvious decision What would be the point of hanging on to something that was killing me?
So, in June 1967, after five months of radiotherapy
I had a hemipelvectomy the removal of the whole leg and part of the pelvis I was 16, my life was just beginning, yet now the pathway forward would be so different than anything I could ever have imagined
Three months later, I had my first fitting for an artificial leg It was made up of what’s known as a bucket socket, with two belts around my waist and a strap over each shoulder I was also handed two walking sticks
Every step was painful, as it is to this day, but after a while my pain threshold rose to meet the needs of independent mobility
Eventually, after a difficult eight months, I managed to get rid of both shoulder straps and walking sticks
But my days as a gas fitter were over Thankfully, the gas board transferred me to a role to the drawing office, and I was able to buy my first car
This gave me a measure of freedom, but I wanted the fun and excitement that I knew I was missing out on
After having a few girlfriends, I met Ann, a beautiful 18-year-old who embraced my disability without a second thought
We fell in love and were married a year later
In our mid-20s, we moved to a new house and Ann gave birth to our daughter, Donna, followed by two boys, Darren and Jamie It was a wonderful time in both our lives
To the children, their dad has always had just one leg To me though, there were times when I wished I could chase them around the garden, play football or simply carry them in my arms
Fortunately, my disability never impacted on my ability to work It was never an issue
And after switching jobs several times, I found one which I really enjoyed in the oil and gas industry, starting as a planning engineer It was an exciting job with some travel home and abroad
My career was moving forward, but when Ann was 36, we had the devastating news of her breast cancer diagnosis A mastectomy was necessary and eight years of operations, chemotherapy and deterioration culminated in her untimely death in November 1995, at 44 – just 12 days short of our silver anniversary
Love again
It left me totally shattered Somehow, I had to be mum and dad to our three now teenage children – and hold down a fulltime job It was hard and painful for all of us
I never thought it would happen, but just over a year after losing Ann, I met Brenda, who had two young boys, Lewis, 14, and Russell, 10 I fell madly in love again We married six years later and recently celebrated our 20th anniversary
I have been truly blessed with her
Looking back on my life, I have learned to manage my disability, limiting my walking where possible, using the shortest routes and finding pain relief options, which worked most of the time but not always Nerve pain is unbearable and if you cannot manage it with medication it is very debilitating and drags you down to a dreadful place But I still have hang ups – like seeing myself walk, for instance
My devastating experience in life has been tough, but I believe I am a better person for it I have more empathy and appreciate such simple things in life, like watching the birds and seeing the wonderful colours in a garden or in the sky
I know the ravages of time on my body will further limit my walking, but I am pushing myself forever onward to enjoy life with Brenda, who encourages me and gives me such a special love
We share and have fun every single day What a wonderful life it has been, and I count myself lucky to this day
And my advice to a 16-yearold faced with amputation from the same terrible disease would be: say goodbye to your old life
Your new life starts now, you cannot go back Embrace your disability and push yourself onwards to a full and rewarding life
ANORTH West hotel is proving that providing good quality accessible accommodation is actually great for business
While the cost of living crisis bites across the industry, Manchester ’s Hotel Brooklyn made £217,000 from its accessible suites and events in 2022 alone
Accessible features extend from bedrooms and bathrooms to conference rooms, restaurant, bar, and mini cinema And it’s all made the hotel a sought-after event venue for groups that include guests with access needs
Owners Bespoke Hotels say the venue proves the business case for embedding accessibility from the outset Its most regular repeat visitors, who have each visited more than 50 times, are both wheelchair users travelling with service dogs
Robin Sheppard, Bespoke president, said: “We have demonstrated how accessibility can be incorporated into a luxury hotel
“We hope tthis will inspire others to help make UK hospitality more accessible for all ”
Inclusive design specialist Motionspot was employed to design and supply the 18 accessible suites and build in attractive access principles and features throughout the hotel’s communal areas
Among accessible features are: n Ceiling track hoists subtly concealed in light fittings and stored within built-in storage n Wall-mounted basins featuring discreet integrated hand grips that can be used from a seated or standing position n Discreet accessible bedroom furniture including safes, mini-bars, wardrobes, desks, and adjustable height robe hooks n Interconnecting rooms for family and carer access n Well planned circulation space throughout the hotel including stylish wheelchair accessible public toilets
Accessible tourism in England is a £15 3 billion a year market, with guests requiring accessible rooms tending to travel with others, take longer trips, and stay loyal to hospitality venues that get it right
DISABILITY AWARENESS DAY: SUNDAY JULY 16
SOMETHING FOR EVERYONE:
Highlights from last year ’s Disability Awareness Day.
This year ’s event is set to be another cracker Make sure you are there . . .