In Scotland, 2018 has been the Year of Young People – a year-long opportunity to celebrate the young people of Scotland and give them platforms to share their voices on the issues that affect them. It has seen a variety of events and campaigns across Scotland throughout the year that have highlighted the diverse and brilliant achievements of all sorts of young people.

We wanted to ensure that some of the young people we support had a chance to present about the opportunities and challenges they face, in their own words, to those who can work to change the policies and legislation that affects them. So, earlier in the autumn, we hosted an event in the Scottish Parliament to provide a platform for some of the disabled and seriously ill young people, and young people who are siblings, that we have supported through our grants and services.

Kindly sponsored by Bob Doris MSP, our young speakers, Ryan Cuzen, Bryony and Harry Lovett and Greta McMillan, delivered thoughtful, personal and moving presentations.

Creative passions

Greta (14) is an artist and a wheelchair user. Her condition means she has restricted movement, so she uses sophisticated Tobii ‘eye gaze’ technology to communicate. The software tracks the movement of her eyes allowing her to paint digitally. At the event, Greta shared with attendees her creative passions and undoubted talent and showcased how technology had allowed her to express her creativity and engage with the wider community, including public exhibitions of her work. Since the event at Scottish Parliament, Greta has travelled to Sweden to present her work at a symposium.

Cheerleaders

We know from research including our own Do Siblings Matter Too? report that being a brother or sister to a disabled child can make a big difference to the lives of young people. Many siblings can be considered to be young carers due to the support they provide their sibling with, whether it’s with caring duties or emotional support. Family Fund supports siblings through its Siblings Matter Too grant programme.

We were privileged to have siblings Harry (20) and Bryony Lovett (21) present at the event. Bryony, a Society, Politics and Policy student, delivered a moving and passionate speech in which she referred to herself as Harry’s ‘cheerleader’. But Bryony also spoke about how Harry had in turn been her cheerleader as she fought to survive and recover from a near fatal car accident in 2017.

Harry has a number of medical diagnosis including Cerebral Palsy, Epilepsy, Dyslexia, Autism and Hearing Impairment and has deteriorating eyesight which resulted in him being registered as blind aged 15. Despite this and accompanying educational and social challenges, Harry is an accomplished swimmer, judo champion and attends college.

Harry is going to compete in the Special Olympics World Games 2019 in Abu Dhabi. In 2014, he took part in the Commonwealth Games Queen’s Baton Relay, having been nominated by The Royal Blind School. Since the event, both Bryony and Harry’s accomplishments were acknowledged at Renfrewshire’s Positive About Youth Awards.

Growing into an advocate

Ryan Cuzen (22) spoke eloquently about the challenges he had faced due to his Aspergers and services and individuals not responding appropriately to his needs. Discrimination, bullying and anxiety had a significant impact on his mental health in the past and led him to experience social isolation. However, sport and fitness and the support of his family and organisations such as Family Fund to help him access more outdoor activities such as skiing have helped him transform his life. Ryan has numerous impressive achievements such as representing Scotland West at the Special Olympics National Games and advising on the design of the new ILF Scotland Transition Fund. In addition he is developing into a prolific blogger and presenter as an advocate for improved practice and provision, particularly in relation to transitions to adulthood for disabled young people.

Parent carers in attendance at the event spoke persuasively of the difference Family Fund had made by being there for them and their children over the years, not just by supporting them through the provision of grants, but by enabling them to access other opportunities. Grant Macrae, a Family Fund Trustee, also spoke emotively of his experience as a parent carer, and the challenge of meeting both the needs of a disabled child and their siblings.

Maree Todd MSP, Minister for Children and Young People, spoke and emphasised the breadth and reach of Family Fund’s work across Scotland, commenting afterwards: “It was a wonderful event, truly inspiring. The young people spoke very powerfully and it was a privilege to hear their stories. It was also great to hear of the incredible difference that Family Fund makes to families with disabled children. For relatively small sums of money, they make a huge difference - sometimes life changing as we heard tonight.”

Joe Fitzpatrick MSP, Minister for Public Health, Sport and Wellbeing, was also in attendance and likewise took the opportunity to meet the young presenters and their families. We were grateful for the support for the event, as well as the encouragement and response to our young presenters, from many representatives from organisations working with children and young people. The cross-party support which was demonstrated both in and around the event was extremely encouraging with attendance and meetings on the day with MSPs from across the political spectrum, including Michelle Ballantyne MSP, Tom Mason MSP and Alex Cole-Hamilton MSP.

At the event, Family Fund’s Partnership Manager for Scotland, Salena Begley MBE, said “It’s an unfortunate truth that many disabled young people and their siblings still face barriers to participating in and contributing to life in Scotland. These barriers are not inevitable aspects of their lives but stem from inequality and discrimination…It is incumbent on us all to do what we can to be part of the solution, rather than part of the problem for young people when they face difficulties and to support them to realise their rights and enjoy the optimum level of wellbeing. “

Although the Year of Young People is coming to an end, we must make sure that its legacy is to ensure that young people continue to be represented, heard and their needs taken seriously.

It is appropriate that the final word goes to Mary-Jane (18) who was one of the young people who were unable to attend, but shared their stories to be included in the presentations and displays on the day. Mary-Jane has Asperger's Syndrome, dyspraxia, dyslexia, visual stress and sensory processing disorder and said “I have just got a place at university studying software development. I think it is useful for other young people to know not to give up on your dream, to challenge discrimination when it happens.”

If you’re interested in exploring ways in which your organisation could work with Family Fund to support disabled or seriously ill children and young people, please get in touch via [email protected].