A PERSONAL JOURNEY: A COLLECTIVE PURPOSE | WHEN ADVOCACY BECOMES PERSONAL | SHAPED BY EXPERIENCE
Senior Manager North James Glen reflects on how lived experience and fatherhood continue to shape his advocacy for inclusive sport and play.
James Glen has been part of the Halberg whānau for over eight years. His journey began as a Regional Adviser, working directly with young people with disabilities and their whānau, connecting with schools and sports clubs, and playing a hands-on role in supporting events—most notably the Halberg Games, where he has long been known for ‘running around’ ensuring everything’s on track and everyone’s having an enjoyable experience.
Over time and driven by experience and a strong sense of purpose, James has progressed into his current role as Senior Manager North. In this position, he leads a team of advisers across the upper North Island while overseeing several key Halberg programmes.
One of James’ major areas of focus has been the development of Halberg content for the CoachMate app. He is currently heavily involved in creating new resources, including 15 new play-based activities and seven lessons, all due for release soon.
“What I have felt for a long time is that we haven’t been good at capturing the voices of disabled tamariki and rangatahi. Too often, we tell stories about them or on behalf of them, but the authenticity of hearing directly from young people is incredibly powerful. We’ve captured seven interviews with young Kiwis with various disabilities, across different ages, genders, and ethnicities,” James says.
Disability must be central to conversations about diversity and inclusion. Yet too often, the diversity within disability is overlooked, limiting whose voices are heard and represented. At Halberg, the focus is on amplifying the voices of young people with disabilities in ways that genuinely reflect their community and lived experiences—whether positive, challenging, or somewhere in between. Through these lessons, James and the team hope to build knowledge and confidence, but most importantly, to inspire meaningful action and lasting change.
James has been a passionate advocate for disability inclusion for much of his life. His early understanding was shaped by growing up with cousins who had intellectual disabilities and by his father’s leg amputation when he was 18.
While disability had always been part of James’ world, it took on a deeply personal significance more recently. About two years ago, before the birth of his son Jonty, routine scans revealed inconsistencies in his brain. After several stressful weeks and extensive testing, it was determined that Jonty has a rare genetic neurodevelopmental condition called Joubert syndrome.
The reality of a rare condition is the uncertainty it brings. There was little way of determining how Jonty’s condition would present, and some early predictions from specialists were especially confronting. For James, this experience mirrored many of the stories he has heard from parents over the years—where uncertainty, fear, and unanswered questions become part of daily life.
“It really hit home—I went from advocating on behalf of others to advocating for my own child. It has been a journey, especially the worry about how this rare condition will affect him,” James shares.
With ongoing uncertainty about what the future may hold for Jonty, James and his wife Megan have been navigating multiple support systems, including physiotherapists, neurodevelopmental specialists, and speech and language therapists.
James has been incredibly proud of Megan over the past two years. As a mum, she has done an extraordinary job—not only parenting and fiercely advocating for Jonty at every step, but also continually learning, growing, and coming to terms with their family’s new reality.
While there are ongoing challenges, there is also a great deal of joy. “It’s not until you go through it yourself as a parent that you truly understand the complexities of disability. We celebrate the small developmental wins along the way,” James reflects. All predictions aside, Jonty is doing remarkably well. James is constantly reminded of how fortunate they are to have a charismatic young boy who brings joy not only to his parents, but to everyone around him.
These experiences have deepened James’ respect for whānau and strengthened his ability to connect on a meaningful level. They have also reinforced his determination to make sport, physical education, and play more accessible and enjoyable for all. “I can’t wait for Jonty to explore sport and get active,” James says.
