A teenage singer-songwriter who has one of the rarest conditions in the world has joined forces with the police to launch an access card for disabled people.
Inspirational Gracie Mellalieu, 18, is championing the innovative scheme that’s being unveiled in North Wales at the end of the month by social enterprise PIWS (Welsh for purple) that was set up to campaign to improve access for children and young people with disabilities at different venues.
North Wales Police is the first force in the UK to adopt the card, although others in England and Wales are now also interested in signing up.
The bilingual card includes up to nine symbols that summarise the disabled person’s access requirements, with each one based on their rights under the Equality Act.
It informs venues “quickly and discreetly” about the reasonable adjustments the disabled person needs so they don’t have to go into lengthy detail about their access requirements.
Gracie, who lives in Mynydd Isa, near Mold, is one of just 3,000 people across the world who has Morquio syndrome.
It’s a condition where the body does not produce enough enzymes to break down materials the body cannot use and affects everything including her mobility.
She has a weekly infusion of a manmade enzyme and over the years has had 11 operations to deal with a variety of issues, including straightening her trachea.
Despite it all, Gracie has a vivacious personality and a winning, infectious smile.
When she’s not studying creative media at Coleg Cambria’s Connah’s Quay campus, the talented teenager is writing pop songs and has already released two singles, Breath of Fresh Air and On Hold.
Gracie was originally recruited as an Access Ambassador by PIWS to “road test” venues to make sure they’re up to scratch in meeting the needs of people with disabilities
She said: “I’ve encountered quite a few problems with access over the years, I’ve even struggled opening the doors of disabled toilets because they’re too heavy. It drives me mad. Why?
“I’m really proud that I am an Access Ambassador, and I can finally put my intelligence and lived experience to good use.
“I feel I’m making a difference in changing people’s attitudes – it gives me a real sense of purpose and the fact that it’s a paid role is great.
“The Access Card is another big step forward because it’s a brilliantly simple and effective idea. By showing the card somebody will be able to help you do what you want to do.”
PIWS was established by events and marketing expert Davina Carey-Evans, a mum of three who spent years seeking suitable leisure attractions to visit with her son, Benjamin, now 30, who has autism and a learning disability.
She said: “I’m very grateful to Gracie for agreeing to be the poster girl for the new Access Card. She’s an absolute force of nature and an inspiration to us all.
“The card was developed by Nimbus Disability in Derby as a communication tool that supports disabled people to show what their impairments are so that venues can respond appropriately.
“Every card has a membership number and is configured so that it provides access that meets the specific needs of the individual card holder.
“The police are going to be launching a whole new blue light system onto the card so that all users across North Wales are going to be invited to click to confirm they’re happy for them to access personal data, including who their trusted companion is.
“For example, if there was somebody at a train station and they’re waiting for a train that’s delayed if you are somebody with autism or a learning disability you may not understand why that train has been cancelled and be unable to manage the frustration.
“In situations like this, physical contact can make things worse, as the person is already experiencing sensory overload, and touch may heighten their distress.
“A far more harmful response would be placing them in the back of a police car and taking them to a station, as their reaction is simply a response to their immediate environment, not criminal behaviour.”
After the pilot with North Wales Police, the aim is to roll it out across North Wales with the support of PIWS Access Ambassadors like Gracie.
Chief Inspector Rob Rands is a long-term supporter of what PIWS are doing in improving access for people with disabilities.
He said: “The concept of the Access Card is something that as a force we and as a wider police service as a whole in England and Wales should embrace 100 per cent .
“It makes perfect sense that you should be able to walk into any place, present your accessibility needs, and have reasonable adjustments made accordingly.
“I’m really proud that North Wales Police is the first force in the UK to adopt the Access Cards. Having said that it’s a common sense idea that we should all take on board.
“For too long, we have responded to everybody in the same way but this signposts and supports the appropriate action so that officers can improve their response so that it respects people’s different needs.”
Funding to launch the Access Ambassadors scheme was provided by North Wales Together, a Welsh Government project to transform the lives of young people with disabilities.
The organisation’s Planning and Development Officer, Sioned Williams, said: “It’s a fantastic new initiative and I’m very supportive, particularly because I’m a parent of a young person with a learning disability.
“It’s important that we remember they are the experts, that they go to places to see whether they are accessible..
“It’s very refreshing that North Wales Police are supporting this initiative and showing the way forward for everybody else.”
It was a sentiment endorsed by North Wales Police and Crime Commissioner Andy Dunbobbin who provided funding towards promoting the bilingual Access Card that’s about to be launched.
He said: “I was very pleased to be able to support the scheme because it’s about bringing people together and emphasises the values of North Wales Police.
“It’s about responding differently to people’s different needs – we need to treat everybody as individuals so that we break down barriers.”
