Disability is a loaded word. Depending on who you ask, it can have implications as diverse as compassion, sorrow, sympathy, inequality and anger. These implications are highly dependent on the values we hold as a society. There are, unfortunately, still examples where someone’s “disability” is considered their only identity. When this happens, uniquely human concepts, such as quality of life, are not prioritised.
The International Classification of Function attempts to map out the impact of the environment and society on disability. It reflects the change from a “biomedical” to “biopsychosocial” model of care. The biomedical model has been the traditional approach for western medicine. An important biomedical concept is that disease is caused by our own biology, and treatments are discovered by biomedical research. The patient has no part in determining the treatment, but is expected to co-operate fully with the system. This approach could be useful when trying to find a diagnosis (even that’s a bit of a stretch), but it’s clearly deficient when considering long-term management. The biomedical model ignores the social aspects of the patient. In contrast, the biopsychosocial model recognises that the environment and society can have a stabilising or destabilising effect on health. The experience of the patient and family should be allowed to influence the diagnosis and management.
The idea of mass environmental and societal change is difficult to process, but it is possible. Our healthcare institutions should be leading this process by example. Management plans need to be grounded in the family’s normal environment, in the context of their values, culture and aspirations. This will force us to think wider than the individual disease or disability. Strong links are needed between the hospital and community, as well as active engagement with the child and family. Rehabilitation must be directed by individualised and achievable goals. If one goal is play soccer, the child’s soccer coach becomes part of the rehabilitation team. We must look beyond traditional healthcare roles to provide rehabilitation that is effective and relevant. This is where societal change begins.