Jodie Murphy’s elder son, Frazer, now eight, was born with the rare life-limiting muscle condition Congenital Nemaline Rod Myopathy, which is similar to muscular dystrophy.
Although his mum has done everything possible to give him access to everything other youngsters his age enjoy, she admits that it is become more difficult.
Jodie, 27, said: “Since transitioning from a manual wheelchair into a 16 stone powered wheelchair in late 2021 Frazer has already found himself left at many doors unable to gain access.
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“What would have been a simple, albeit undignified solution, in lifting Frazer and his wheelchair is no longer possible with the weight of his chair alone.”
What should have been a great family day out to watch younger brother Robbie, six, sign his football contract with Syngenta Juveniles FC, turned to disappointment as the event was taking place in the upstairs function suite at the Plough Hotel in Stenhousemuir and it was impossible to get Frazer to the first floor room.
However, when Jodie later contacted Plough Hotel owner, Steven Allison, who is also the Syngenta director of football, about their experience and the family missing out, she was delighted when he pulled out all the stops to give Robbie and Frazer a very special day.
He said: “I was in tears reading her email and was delighted to do what I could to make it a special day for the family.”
Mr Allison invited them along for a meal, recreated the signing for young Robbie and first team coach Gordon Wylde also attended to meet both boys.
Jodie, a social work student, said: “Mr Allison was horrified that Frazer had found himself in a position where he had to miss out on the day, so invited Robbie back to the hotel to their wheelchair friendly main restaurant, pulling out every stop possible to create a perfect experience for both boys as Robbie resigned his football contact.”
The mum added: “I’m aware the building is in line with current legislation but it made me more passionate than ever before about highlighting the importance of access not only for Frazer but for an entire community of people who find themselves marginalised from social participation because they simply don’t have the physical capacity to climb stairs.”
Young Frazer, who like his brother attends St Francis Primary School, had previously played with Syngenta’s pan-disability football team but when he transitioned into a powerchair he had to move on and is now proudly playing powerchair football with Clyde Powerchair FC.
Jodie said she has immense gratitude to Syngenta for their support since Robbie joined in 2020.
The Falkirk mum said: “Frazer has always been welcomed, understood, and included - he is invited along to every Christmas, Easter and Halloween party. When Robbie’s team get a new kit with their match numbers on, Frazer gets one with his name on the back, at the club’s expense.
“But accessibility is an issue that lies so far beyond any football club or function suite/venue. What Mr. Allison has done for us is more than I ever expected, his understanding, empathy, and generosity towards us has been unmeasurable - but we can’t expect nor guarantee that every business owner has the same heart.
“We need a long-term fix for access. We live in a world with smart technology, self-driving cars and we are encouraged and supported to be anything we want to be in all aspects of life, but my son and many others are limited further than have to be every single day because of non-level access.
“A step more than an inch in height and we have no hope of getting past it.
"It’s wrong and millions of people every day, everywhere are excluded socially because they cannot walk or climb stairs.”
Jodie added: “Frazer won’t be eight forever. When he is 18 and his level of achievable independence is in everyone’s hands except his own the answer to giving Frazer and millions of others back that control must start with a change of mindset.
“We all need to do more to make this world a much nicer place for every ability and no matter if that is simply highlighting a social barrier or standing in parliament it will one day amount to change and change is what we desperately need.
“I know it’s not comfortable taking up space and I know how hard it is to ask difficult questions but it’s important and we must do so for the generations to come.
“We shouldn’t be living our life as second-class citizens, being turned away at a door.
"Days out shouldn’t be better luck than judgment. If I can get in so should Frazer be able to; it shouldn’t even be a conversation or a question to be had.
"Frazer depending on a wheelchair doesn’t make him disabled - society’s picture of acceptable is what makes him disabled.
“I have already initiated some conversations with friends within the parent/carer community - people who also find themselves in the same situation more often than not and we are all so passionate about change, but without the wider community behind us we are ultimately laughed at.
"The challenges ahead are not impossible when the drive is fuelled by passion and a little bit of upset, but what we do need to make a difference first and foremost is a better understanding of the barriers we face every time we cross our front doors and access is the biggest one.
“I don’t want mountains to be moved, I just want lifts installed upon them and a little hand to get Frazer to the top.”
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