Campaigners, creatives and entrepreneurs all made the Dimensions Learning Disability and Autism Leaders List, writes Duncan Bell
Rising athletes and successful dancers, political campaigners and passionate self-advocates, published authors, experts by experience and dating agency managers – all can be found on the 2019 Dimensions Learning Disability and Autism Leaders’ List. These are individuals with mild, moderate, profound and multiple learning disabilities or those whose autism manifests in many ways. They have a wide variety of health needs. And all of them have had to work harder than others to get where they are. Although society has come a long way, it still is not shaped with disability in mind. The Leaders’ List celebrates their achievements in advocacy, sports, work and education, arts and entertainment, nationally and locally. More than 400 people were nominated for the 42 places on the list. Winners were selected by a panel of expert judges, two thirds of whom have a learning disability or are autistic themselves. One winner from each of the four categories is profiled here.
David Gill: work and education The learning disability and autism adviser for the children and young people’s team at NHS England, David Gill is passionate about sharing his story of succeeding with autism to inspire others. He wants to make sure every child and young person with a learning disability or autism enjoys the same opportunities that he has. “It really matters to me to make a difference to the lives of others,” he says. He made the A Future with Autism (https://tinyurl.com/sxhxleu) video for the NHS Patient Voices website about his journey growing up with autism. Featuring his own artwork, illustrations and narration, it inspires young autistic people to know that they can have a future in work. It also inspires employers to see people with autism in a positive light and to take the plunge and hire them. However, when Gill was young, his parents were told he did not really have a future and he struggled at mainstream school. He turned a corner when he attended a school for autistic children then a learning disability and autism residential college. At college, he gained qualifications and learned to live independently. His job helped him redefine how he is perceived and taught him to start believing in himself. This led to volunteering at the Speakup Self Advocacy charity, of which he became a trustee before gaining full-time paid employment at NHS England in 2015. Gill still lives and works with the challenges of being autistic. Crowded places, large meetings, teleconferences, travelling, staying away from home and meeting new people are difficulties he faces with courage and determination at work every day. Sarah Jackson, autism clinical lead at NHS England, says: “We support David with as much practical stuff as we can to help make this easier, but it’s David who rises to the occasion every time – he is now a confident and a brilliant public speaker.” Steel Squid Collective: sports, arts and entertainment “My daughter came home yesterday and all she could talk about was the Steel Squid Collective’s visit to her college. She said she loves it and now wants to join the group as a dancer,” said a Leader’s List judge. “I think you might have an emerging fan!” The Steel Squid Collective is a group of musicians from Burley who all have learning disabilities and associated difficulties. Their music has one purpose: to help young adults transitioning from full-time education into adult services. For young people with learning disabilities, moving from full-time education, where they have structure, routine and purpose, into adult 
support services can be a daunting prospect. The Steel Squid Collective are here to help. Their debut EP and supporting tour will help show teens across the country that they are not alone and inspire them to think about their own dreams. They have overcome hurdles to be where they are; at times, all have been frustrated or felt like giving up. The collective members illustrate just how people with learning disabilities can achieve amazing things, with dedication and hard work. They show people that the right, person-centred approach to support can change lives. Such serious issues sometimes need a light-hearted approach. At such a scary time, some humour can help make a situation seem less intimidating. Who knew that one of their songs – Cider with my Greggs – could have such a positive message?
Jessie Carter-Kay: local communities Jessie Carter-Kay is the driving force behind Pulp Friction, a social enterprise that supports people with learning disabilities and/or autism. Carter-Kay has learning disabilities and autism. She wants to help people and make new friends but, sometimes, her speech can be difficult to understand. As a result, she has been patronised, infantilised and ignored. She will not accept discrimination, against herself or others. This is why she worked with her mum, Jill, to set up the Pulp Friction smoothie bar project. Pulp Friction is a social enterprise that helps people with learning disabilities and/or autism to be more independent and develop their work and social skills. It runs a range of hospitality and catering activities, including pedalpowered smoothie bikes, an ice-cream tricycle, a cafe and two canteens. What started as a hobby has grown into a business that employs 13 people. As an ambassador for Pulp Friction, Carter-Kay volunteers in all aspects of it. She uses the profits from the catering side of the business to fund social and leisure activities, including an inclusive choir and a dance group led by people with disabilities. Carter-Kay spends most weekends volunteering at community events. She raises the profile of those with disabilities and autism by changing the perceptions of individuals, groups and organisations. Although Carter-Kay can be quiet and timid, she has a strong sense of right and wrong and always wants to challenge what she sees as social injustice. She works hard to make sure all people are treated equally. “I have always appreciated Jessie as my daughter. But, when I step back and look at what she does, how she does it and what others say about her, I can really see the difference she is making,” says Jill. “I’ve had parents and young people who are struggling with a range of additional needs tell me that Jessie gives them hope for the future.”
Francesca Dunn and Samir El-Ziftawy: advocacy, policy and the media category
People with severe disabilities cannot use regular accessible toilets and need somewhere to be changed when they go to the toilet. Without a public place to change, they simply cannot stay out for long. Samir El-Ziftawy and Francesca Dunn feel this is really unfair. Having profound and multiple learning disabilities, they cannot use words so communicate in other ways. For example, Dunn blinks once to say “yes” and stares to say “no”. El-Ziftawy shows that he agrees by smiling widely and making a “happy” sound. Both have a great sense of humour and living a life Campaign 4 Change laugh at funny jokes. They talk to each other and people around them through eye contact and facial expressions. El-Ziftawy is the centre of attention with his radiant personality, and Dunn knows exactly what she wants and she gets it. “Samir and Francesca work together as a team… they come as a duo and support each other… I am extremely proud of their achievements over this past year,” says Katie Reid, healthcare facilitator at disability support organisation Achieve Together. Through self-advocacy group Campaign 4 Change, El-Ziftawy and Dunn encourage those managing places such as shopping centres, cinemas, restaurants and parks to install Changing Places toilets to make going out and staying out possible for people with severe disabilities. They also raise awareness of their campaign by meeting the public on Changing Places Awareness Day, sporting Changing Places T-shirts and signs, and through photoshoots. Their achievements prove that people with profound and multiple learning disabilities can make their own choices, be involved and be dedicated to a cause. They demonstrate that having very severe disabilities does not stop one making a real difference and having a meaningful life and goals.
Read all the winners’ stories at https://www.dimensions-uk.org/leaderslist2019
