Key messages

1. Disabled adults and children experience similar forms of exclusion based on the perception that their dependencies are natural and inevitable due to the presence of impairment or in the case of children, their age.
2. The findings of the research include:
   1. Some participants’ understanding of independence as self-sufficiency differs from the meaning of independence promoted by the independent living movement that emphasises interdependence and choice and control over the support that a person receives rather than self-sufficiency;
   2. Disability is commonly perceived as a negative difference;
   3. Pathologisation of childhood disability incorporates the attachment of negative value to impairment as a bodily difference; and
   4. Children are often sidelined in medical encounters and often do not have enough opportunity to express their views or concerns.
3. The risk associated with the pursuit of a medical ‘fix’ that bears relevance to children’s potential for independent living is embodied in four ways:
   1. 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;
   2. Both children and parents develop an understanding of disability as an individual problem and a negative difference that is best resolved through medical interventions;
   3. The pathologisation of impairment leaves little space for disabled children to imagine a fulfilling life and the ability to flourish without pursuing sometimes risky medical interventions; and
   4. If children are not allowed and encouraged to express their views, they might miss out on learning that their opinions matter and be less likely to grow up as self-determined individuals.
4. Disabled children need to be provided with the opportunities and support to express their views freely even on sensitive and important issues, such as medical treatment decisions.