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What does it mean to have cerebral palsy?

By Cadeyrn Gaskin, Deakin University

"What does it mean to have cerebral palsy?" For many, answering this question will conjure up images of awkward gaits and electric wheelchairs, slurred speech, and stiff, jerky, writhing, and otherwise poorly controlled movements. These characteristics would certainly be consistent with the accepted definition of cerebral palsy as a disorder of movement and posture. But how useful is this type of definition when trying to explain other common experiences of people with cerebral palsy, such as being denied access to education, struggling to find work, facing difficulties with forming close relationships, living at home with parents well into adulthood, and so forth? Can thinking of cerebral palsy as purely a medical condition help us to understand these often unfavourable outcomes? I argue that it can't. To develop a broader understanding of what it means to have cerebral palsy, we need to take a step back and look at how society views disability.

Advances in science and medicine over the last two centuries have meant that individual pathology has become the dominant explanation for disability. Researchers and clinicians have made outstanding progress in understanding cerebral palsy from a medical standpoint, generating knowledge that is used in the prevention and management of the condition. There have been some unfortunate consequences of these developments, however. Diagnosis adds weight to the stigma associated with cerebral palsy – it effectively says, “You are different to everyone else, something is wrong with you, and you need to be fixed.” The problem is that cerebral palsy cannot be cured, which leaves open the possibility of people with cerebral palsy believing that they are abnormal and there is nothing that can be done to remedy the situation. With medical people usually held in high esteem, this idea that cerebral palsy is something wrong with individuals is one that typically goes unchallenged. But there are other ways of thinking.

One of the more significant contributions of the disability rights movement, which began over 50 years ago, has been the separation of the idea of disability from that of impairment. Disability no longer referred to a medical diagnosis, such as cerebral palsy; it meant something far greater. Disability was no longer someone's individual impairments, it was something that society had created. Cerebral palsy does not cause disability. Rather, disability is caused by footpaths with no curb cuts, buildings with stairs but no ramps or elevators, and so forth. Disability is caused by the prejudiced attitudes of others, which contain mixtures of fear, pity, and expectations of mediocrity. Disability is caused by education systems in which receiving an inclusive schooling depends too much on the luck of finding schools and teachers who see potential, rather than problems. Disability is caused by a medical system that continues to view cerebral palsy as a paediatric condition, forgetting that most children with cerebral palsy grow up to be adults with cerebral palsy.

From these last few examples, you may have picked up that disability isn't just a medical or social issue, it is also a human rights issue. People with cerebral palsy need to learn to be strong self-advocates (and, in many situations, have people around who can advocate for them) so that they can enjoy the same rights as everybody else.

When focusing on the societal aspects of disability, however, we cannot forget the impairment still exists. Indeed, in developing their understanding of functioning and disability, the World Health Organization have drawn on both medical and social perspectives on disability. Their thinking around disability recognises that cerebral palsy affects people’s bodies, what they are able to do, and the extent to which they are able (or allowed) to participate in society. Both personal and environmental factors influence the extent to which people with cerebral palsy can function in society.

For some people with cerebral palsy, the individual effects of this condition extend far greater than any movement or postural issues. Having to deal with the social effects of disability can be quite damaging. My own work has shown some quite clear links between living in an unaccommodating society and poor mental health. The real danger here is when people with cerebral palsy start taking on board the negative messages they receive from the outside world (e.g., they are unintelligent, unemployable, or unworthy of love) and accept them to be true.

Recognising the different meanings of disability opens the door to the possibility of creating new meanings – ones that are empowering, rather than exclusionary. One approach is to challenge the idea that people can be divided into two camps – people with, and those without, disability. Rather than focusing on labelling people, we could celebrate the differences that exist between us all. Cerebral palsy could be reframed as an example of neuro-diversity, rather than pathology. Cerebral palsy could be seen as one of the millions of possible variations between humans, rather than being considered as opposite, and inferior, to normalcy. Another (somewhat different) approach is to embrace the label of “disability’, but utterly reject the views of disability as being a personal tragedy. Instead, individually and collectively, people with cerebral palsy have the opportunity to create positive identities that incorporate their impairments and disability.

To answer the question I posed at the beginning of this blog, cerebral palsy means having a disorder of movement and posture, but that’s not all. Cerebral palsy means having to negotiate physical worlds that were not built with them in mind. Cerebral palsy means having to interact with people with broad and varying views about disability, from inclusive and accepting to discriminatory and abusive. Cerebral palsy means having to do all of these things while trying to maintain a healthy sense of self-worth. Cerebral palsy means having to do all of these things while trying to pursue the same hopes and dreams that everyone else has.

Dr Cadeyrn Gaskin
Centre for Social and Early Emotional Development & School of Psychology
Deakin University

See our other blogs about cerebral palsy;

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