Growing up together with young people with disabilities: Co-producing the future

The introduction of the ‘F-words in childhood disability’ in 2012¹ put forward vital concepts regarding the impacts of disability on a child's function with a focus on: function, family, fitness, fun, friends, and future. This framework has been taken up internationally to support a more holistic approach; particularly to the design and access to physical activity and rehabilitation-based interventions involving disabled children and their families.² Recent research also highlights the importance of psychosocial issues when considering quality of life.

Simultaneously, much work has been done to involve young people with disabilities or developmental differences in research and in decision-making about their lives. Increasingly, research has advocated for co-production/co-creation, yet the focus has tended to be on tangible outcomes in the near future (within a year) rather than consider childhood-onset disability across the lifespan.³ As we move from a culture of ‘fixing’ deficits, defined by those without disability, towards one of optimizing participation across contexts, there is little knowledge about how we co-create a future that includes young and older adults whose disabilities extend from childhood. While professionals believe we understand some of the impacts of childhood disability into adulthood, we are hampered by an ignorance of the expectations and recommendations from these individuals themselves. This is especially apparent in the presence of language, intellectual, or communication difficulties.⁴

As such, this editorial is a collaboration with a young man with Down syndrome and his family, to consider how we can co-produce opportunities, services, and support to bypass assumptions and work together for an inclusive future. Concepts of the future are a challenge to visualize, so we reflected together on the process of growing up. Charles used his strengths in drawing and colour to provoke discussion and express his thoughts. In response to images of Charles's schools and further education placements, Charles provided a list of friends and his happiness doing things and learning new information and skills with his friends. Yet, talk about his current life was illustrated by images of a cage (Figures 1 and 2).

At key crossroads transitioning from childhood to adulthood, decisions regarding therapies and placements for further education or ‘adult’ services were made without involving Charles. Yet, Charles had the confidence to approach the manager at a local McDonald's and ask for a job and was then employed by a visionary manager, complete with responsibilities and a pay cheque. With the move of a supportive manager away from the premises and the lockdowns of the recent pandemic, these opportunities to be a productive and valued member of a community disappeared.