More than one billion people (or approximately 15% of the world’s population) live with some form of disability (Martin Ginis et al., 2021), making it nearly, if not completely impossible for you not to interact with and/or affect a member of this population at some point in your life. In my life, that person’s name is Wyatt – A bright, funny, unfailingly perseverant individual who, through no fault of his own, was born with Cerebral Palsy – or more succinctly: my son.
What do you know about this health promotion topic to date?
In general, persons with disability (PWD) are known to have poorer health, be at greater risk of injury and chronic disease and be subject to the earlier development of age-related health conditions due to factors associated with their impairment (including, but not exclusive to, physical impairments) (Martin Ginis et al., 2021). Of these factors inactivity and its health consequences are particularly notable (Armstrong et al., 2022; Martin Ginis et al., 2021). In high income countries, where most data is currently available, (another issue in its own right), PWD are anywhere from 16-62% less likely to meet physical activity recommendations than their “able” peers, with children meeting guidelines 8.5-40% of the time, and females less active than males (Martin Ginis et al., 2021). Opportunities for and participation in physical recreation of this population declines sharply with age (Block et al., 2013; Folsom-Meek et al., 2007), making action on the increased availability of ongoing recreation opportunities, in my opinion, an important priority.
Disability has historically been (and remains, in my experience) a highly medicalized term (Martin Ginis et al., 2021). This leads to a deficit view of the person - their health, their capabilities, their worth - and results in a failure to promote well-being in this population over goals of simply prolonging or preserving life. Physical recreation programming is particularly limited under this view given an underestimation of ability or fear of participant risk (*guilty*), as well as lack of knowledge on how to adapt programming to meet individual needs (*guilty again*) or how to focus on inclusion over competition (Block et al., 2013; Folsom-Meek et al., 2007; Zhang & Griffin, 2013). Private opportunities are generally more available than those in the publicly-funded realm, but neither are currently sufficient to meet need or demand.
Factors affecting participation in physical recreation programming for persons with disabilities are numerous and varied. These range from intra and interpersonal factors (attitudes - individual and societal, body function, communication challenges, and availability of support) to institutional (lack of knowledge, training, and subsequent availability of programming), and policy-based (including notably, funding) (Armstrong et al., 2022; Block et al., 2013; Folsom-Meek et al., 2007; Martin Ginis et al., 202; Zhang & Griffin, 2013).
The literature, however, consistently recognizes the benefits of physical activity for PWD. These range from improved cardiovascular fitness and muscular strength, to improved functional skills, psychosocial well-being, cognition, and quality of life (Armstrong et al., 2022; Block et al., 2013; Folsom-Meek et al., 2007; Martin Ginis et al., 2021). More importantly, there exists no evidence that physical activity within this population is harmful, with individuals across the disability spectrum able to gain some benefit out of nearly every activity (Folsom-Meek et al., 2007; Martin Ginis et al., 2021).
As a parent of a child with a disability I have, for a decade now, had the opportunity to navigate both the public and private system in search of appropriate recreational opportunities for my son – those that are both suited to his abilities and match his interests, not to mention meet logistical criteria including location, timing, and cost. Often, where opportunities do exist, planning and execution is poor. Namely, under or un-trained staff and volunteers are tasked with running groups at ratios unsupportive of inclusion or at times safety. Activity planning is also often lacking, with group leaders unable (unsure, unsupported) to adapt programming to meet unique participant needs. The result: a 30-minute free-for-all on a Wednesday evening, and in my case, a distraught, noise-sensitive 10-year-old who is overwhelmed by the chaos and just wants to go home.
After a decade of searching, trialing, failing, and trying again, I would like to see change – and who better then to explore that change, than me?
What are my own personal learning goals?
Beyond a greater understanding of disability-specific recreation programming (the hows, the whats, the whys) I am eager to gain a greater grasp on the processes (steps, phases, hurdles) associated with health promotion program planning. I feel that in doing so I cannot only become a better advocate for Wyatt, but maybe also a more meaningful contributor to the disability recreation landscape in my local area and beyond.
What do I most want to learn more about, and why?
I am most excited to learn further about the range of disabled participant needs and how these can be met through physical recreation programming and provide meaningful experiences towards the promotion of a more holistic sense of well-being. Specifically I hope to better understand how these needs change with age, and how new programs can be created, or existing programs adapted, to maintain interest, motivation, and participation across the life course. I will take particular interest in needs of those in adolescence (most pertinent to my current situation) but believe it will be equally interesting to look back (what, as a parent, might I have done differently?) and look forward (what opportunities could there be for my child in years to come?).
Anything make me nervous?
As I begin this journey I am most concerned about roadblocks – both those I may encounter mentally, and in the course of research. Mentally, it may be challenging to maintain interest in and motivation towards a topic and project over a sustained period of time - in this case, three consecutive semesters. In the course of research, I am nervous that there may only exist so much and that what is available may not be sufficient or pertinent. Additionally, roadblocks may appear in the process of solution-making. Specifically, I am concerned that what I may deem an obvious fix might entail not so obvious (to me) limitations, with even less obvious solutions.
But for Wyatt, I am up for the challenge.
References
Armstrong, M., Sharaievska, I., Crowe, B. M., & Gagnon, R. J. (2022). Experiences in outdoor recreation among individuals with developmental disabilities: Benefits, constraints, and facilitators. Journal of Intellectual & Developmental Disability, 48(1), 46–57. https://doi.org/10.3109/13668250.2022.2104449
Block, M., Taliaferro, A., & Moran, T. (2013). Physical activity and youth with disabilities: Barriers and supports. The Prevention Research, 20(2), 18-20.
Folsom-Meek, S., Nearing, R., & Bock, R. (2007). Transitioning children, youths and young adults with disabilities. Journal of Physical Education, Recreation & Dance, 78(3), 38-51.
Martin Ginis, K. A., van der Ploeg, H. P., Foster, C., Lai, B., McBride, C. B., Ng, K., Pratt, M., Shirazipour, C. H., Smith, B., Vásquez, P. M., & Heath, G. W. (2021). Participation of people living with disabilities in physical activity: A global perspective. The Lancet, 398(10298), 443–455. https://doi.org/10.1016/s0140-6736(21)01164-8
Zhang, J., & Griffin, A. J. (2007). Including children with autism in general physical education. Journal of Physical Education, Recreation & Dance, 78(3), 33–50. https://doi.org/10.1080/07303084.2007.10597987
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