Flip the script
Reframing disability, capability, and possibility.
“What do you want to brag about today?”
This is the first question Dr. Peter Rosenbaum, a beloved doctor with McMaster University’s CanChild Centre for Childhood Disability Research, likes to ask his patients when they visit.
The power of perspective
Mindset plays a significant role in how a family or patient manages their daily life with disability. I don’t mean to suggest that living with limitations is a mind game, yet when a doctor begins their assessment with an invitation to share joy, there is a noticeable positive impact on the rest of the appointment.
In 2011, Dr. Rosenbaum, with his colleague Dr. Gorter, published a paper titled: “The ‘F-words’ in Childhood Disability: I swear this is how we should think!” Based on the World Health Organization’s International Classification of Functioning, Disability and Health, the paper features six F-words that Rosenbaum and Gorter believe to be the focus in childhood disability and development. The words functioning, family, fitness, fun, friends and future form a framework that amplifies the abilities of the child or youth.
Sometime ago, I sat through a compulsory two-part interview with Disability Services Ontario (DSO) alongside my 17-yr-old daughter, Rachel. Unable to use her words to communicate, Rachel relies on others to advocate for her. Hence, I was with her in that interview to speak on her behalf regarding her support needs in preparation for adulthood.
harsh reality
The DSO’s Support Intensity Scale-Adult Version (SIS-A) measures support needs for disabled individuals in six life activity domains: home living, community living, lifelong learning, employment, health & safety, and social. Diagnosed with a rare syndrome shared by less than 10 families in the world, Rachel requires extensive exceptional support in all six domains and can access very limited options within all domains.
When the interview finished, I wept. It is heart-breaking to be reminded over and over what your child cannot do, cannot access, or cannot be. The F-words Framework is a lifeline for families like mine, for Rachel and Janneke who share the same rare diagnosis and similar limitations. It offers hope and the chance to be curious about possibilities related to quality of life, unique milestones and goals. The framework influences how I describe my kids to anyone who provides their care.
Perhaps that is why the DSO meeting was particularly gut-wrenching.
A new way forward
This F-words Framework has now been adopted by many organizations, service providers and families around our world. Here in Ontario, the Ministry of Children, Community and Social Services has helped to fund the use of the framework for the province’s SmartStart Hubs. These places serve as entry points for children to access services they need throughout development. We are thankful there’s momentum growing to reframe disability, capability and possibility, particularly for service providers and for families just beginning to grow. This is something to celebrate.
