A. Understanding of independence

When discussing what had led them to agree to proposed medical interventions the parents, children and young people interviewed spoke about the hoped-for benefits and discussions revolved around participants’ perceptions of the quality of life of disabled people. Parents wanted to provide the best future possible for their children and placed a high value on independence in adult life. However, their understanding of the meaning of independence largely revolved around physical capacity and self-sufficiency.

A mother of an 11-year-old boy with cerebral palsy from England, when I asked her about the outcomes that she is hoping the surgeries would bring said:

A pain-free life? I mean, I can't imagine that anybody sitting in a wheelchair for the most, majority of the day is going to be pain-free. Nobody has said that to me. But I mean, I can't imagine. I want him to be as fit and healthy and active as he can be.

A mother of an 18-year-old young woman with cerebral palsy from Serbia spoke about the attitude of a doctor who felt the urge to do anything possible to prevent her daughter from becoming a wheelchair user. This urge to do something about the young woman’s impairment led to multiple surgeries, some of which resulted in decreased functionality of her body. The mother shared the following:

The doctor absolutely does not like to see children in wheelchairs. She [the doctor] always emphasises it. If a child can, if a child tries hard, she would prefer to prolong it as much as possible, the involvement of the wheelchair, because then a child is static and then there’s no progress…. She’s always insisted saying that she [the daughter] did not need a wheelchair, yet. She doesn’t like to see children in a wheelchair, hence she’d been trying on her [the daughter] everything that’s possible…

The narratives from the interviewed parents revealed beliefs and misconceptions related to the quality of life of disabled people, including those using assistive technologies and other sources of support. Independence, in terms of self-sufficiency, ranked highly among the hoped-for benefits of the surgeries. This is consistent with the findings of McLaughlin (2017, p.247) who also reported that medical interventions were seen as something that could provide greater independence. The understanding of independence as self-sufficiency differs starkly from the meaning of independence promoted by the independent living movement which emphasises interdependence and choice and control over the support that a person receives rather than self-sufficiency (Mladenov, 2021).