Conclusion

The emerging findings presented in this paper do not imply that all impairment-related medical interventions are oppressive or that they are not warranted. In fact, throughout the interviews I conducted with disabled children and young people and their parents, it became clear that in many instances the children and young people experienced alleviation of their impairment effects that, in their view, significantly improved their quality of life.

However, the testimonies of the young people and their parents revealed that there are unintended consequences of frequent hospitalizations and exposure to medical interventions. In the pursuit of a medical ‘fix’, disabled children and their parents develop an understanding of disability that corresponds to the individual model of disability and may lead to repudiation of disability identity. The ideas of the social model of disability and disability pride, which are central to the independent living movement, may be remote for them. Disabled children need to be provided with opportunities and support to express their views freely, even on sensitive and important issues such as medical treatment decisions. Adults' preoccupation with children’s impairments may leave little space for children to take a meaningful part in discussions on their best interests and quality of life. Ignoring children’s views on these important matters downplays the importance of nurturing their increasing maturity and autonomy. It is only through ongoing negotiations of their daily lives, including on important matters such as healthcare, that disabled children’s capacities evolve.

The independent living philosophy rests on the notions of self-determination and autonomy. It also fosters positive disability identity and a sense of belonging to the disability community. If disabled children are to grow up to be adults in a position to retain choice and control in their lives, then their evolving capacities need to be recognised and nurtured today by the people involved in their care. Pathologisation of children’s impairment may convey the message of impairment as a negative difference. However, this need not be the case as medical interventions can be focused on alleviating impairment effects without attaching negative value to life with impairment and speculating what it means to live independently.