Discussion

Brisenden (1986), in his writing on the negative implications of the medical model of disability on independent living of disabled people, warns against medical treatments and hospitalisations that are recommended for the disabled even when they do not necessarily lead to improvements in the quality of life. According to Brisenden, frequent hospitalisations and medical interventions represent a source of disablement. He explains that this is a consequence of how medicine views and defines disability:

This has occurred due to a failure of imagination, the result of the medical profession's participation in the construction of a definition of disability which is partial and limited. This definition has portrayed disability as almost entirely a medical problem, and it has led to a situation where doctors and others are trapped in their responses by a definition of their own making (Brisenden, 1986, p.176).

Without the intention to downplay the benefits of the orthopaedic surgeries that the children and young people in the study experienced, I want to highlight the risk associated with the pursuit of a medical ‘fix’ that bears relevance to children’s potential for independent living.

This risk is embodied in at least four different ways. First, the power of medicine constructs the meaning of independence in terms of self-sufficiency and sets the goals of impairment-related medical interventions in terms of independent functioning. Mladenov (2021, p.10), when writing about the independent living movement’s struggle for the meaning of independence as choice and control over the support one receives and interdependence with others rather than self-sufficiency, explains that “powerful disability policy actors have perpetuated a one-sided interpretation of independence as self-sufficiency - an interpretation whose reproduction has constituted a hermeneutical injustice inflicted on disabled people”.

Second, prompted by the power of medicine, both children and parents develop an understanding of disability as an individual problem and a negative difference which is best resolved through medical interventions. Disabled childhood is often a time of medical interventions. Many young people derive their sense of self from others and gain their first knowledge about disability through narratives of medicine. When I asked study participants to talk about the challenges they face, most young people started with their medical conditions and medical history and were well versed in juggling medical terminology. Griffiths (2018), in his research on disabled young people’s involvement in disability activism, showed that the social model of disability as a ‘big idea’ of the disability movement remains distant to young people, not least because of the narratives constructed by medicine and the preoccupation with fixing impairment during childhood.

Third, the pathologisation of impairment and its denunciation as an ‘abnormal’ state of being leaves little space for disabled children and young people to imagine a fulfilling life and the ability to flourish without pursuing sometimes risky medical interventions that go beyond the aim of stabilising initial conditions and alleviating impairment effects and are imbued with uncertainty. Such pathologisation further leads disabled young people to distance themselves from other disabled people, especially if the outcomes of the medical interventions get the young person closer to the category of ‘normal’. The reward of passing as ‘normal’ in terms of avoiding being stigmatised by others may be very attractive to young people. However, this ‘reward’ means the construction of disability as ‘abnormality’ often goes unchallenged (McLaughlin et al., 2016). This construction can create distance between young people who can ‘pass’ and those who are ‘really disabled’. The independent living philosophy is underpinned by feelings of pride, community belonging and a view of disability as a matter of human diversity (Swain and French, 2000). In the absence of positive role models and peer support, these ideas may seem remote to young disabled people.

Finally, parenting practices that support children to express their views and have a say in important decisions nurture children’s evolving capacities and increase their potential for independent living in adulthood. If children are frequently asked for their opinions, they can learn that their opinions matter and will be more likely to become self-determined individuals.