C. Pathologisation of impairment

To consider the effects of pathologisation of children’s impairments it is helpful to briefly discuss a distinction that Sholl draws between medicalisation and pathologisation (Sholl, 2017). In his view, there are overlaps between the two concepts but they are not necessarily the same. He claims that a distinction can be drawn between diagnosing and defining conditions as pathological and treating them through medical interventions. The two processes can be decoupled:

If pathologization involves the ways in which certain conditions come to be labelled as pathological by medical institutions (definitions), in the clinic (diagnoses), or by self-labeling, then medicalization could be seen as involving various types of medical responses and interventions or treatments that are justified in relation to health concerns (Sholl, 2017, p.268).

Sholl further asserts that medicalisation can occur without pathologising the conditions which are to be medically treated. It follows that a child’s impairments do not have to be labelled as ‘abnormal’ or be assumed to lead to a diminished state of being or suboptimal functioning that deviates from the typical norm to still warrant medical attention to alleviate impairment effects and improve the child’s quality of life. Avoiding pathologisation does not imply a rejection of medical treatments but involves rejection of the attachment of negative value to impairment as a bodily difference. Sholl argues that “that some conditions can be depathologized while still being medicalized” (Sholl, 2017, p.269).

In practice, a move away from pathologisation requires healthcare professionals to avoid regarding a disabled child as a collection of broken parts that need to be treated by all means because of the underlying pathology but as a child whose conditions may require consideration of the viability and appropriateness of medical interventions and social interventions, such as the provision of aids, personal assistance or an accessible environment. The move would also require posing difficult questions to parents and helping them to consider their attitudes toward disability and understand the limits to the effectiveness of medical interventions, especially when they are imbued with risk and uncertainty (Parens, 2009).

Most of the parents and disabled young people interviewed were able to pinpoint benefits and quality of life improvements that resulted from the chosen surgeries, which implies that medicalisation of impairments may at times be appropriate but should not be conflated with pathologisation. Some of the examples of alleviated impairment effects included improvements in the child’s gait and posture, reduced spasticity, alleviated pain, improved ability to stand or walk with or without the support of mobility aids, and more effective participation in favourite activities.

In some cases, the stated motivations to pursue surgical treatments stemmed not only from considerations of quality of life and alleviated impairment effects but from a desire to get closer to an ideal of normalcy. The idea of normalcy was so seductive that in some cases families pursued high risk treatments with uncertain outcomes. Young people placed a high value on the aesthetics of their bodies and favoured surgeries that helped to pass as ‘normal’. In a move away from pathologisation, this type of judgement of what the typical norm is should be avoided.

An 18-year-old young disabled man from Serbia with cerebral palsy talked about his experience with his consultant who ignored the symptoms that the young man described but rather insisted on a pathology that in the young man’s view was not there at all:

He didn’t seem really familiar with the problem I have or maybe he did but he didn’t offer a good solution as doctor B [pseudonymized]…something like that. He said he wants to replace my ankle on the right foot or to do surgery on my right arm because he thought that my right arm is also poorly because my right leg was worse than my left one…as my right leg was more affected by cerebral palsy so he assumed that’s the case with my right arm as well but it wasn’t like that. And then he wanted to perform surgery anyway.

The young man resisted and managed to get a second opinion and get the appropriate treatment at another hospital. He explained the reasons why he thought surgery he received at the second hospital was a good option for him. Although he experienced tangible benefits, he also attached high value to an ideal of ‘normalcy’:

Well, I was hoping that I could walk normally, as I’m walking now more or less. I mean, people almost can’t tell the difference between me and others so I am totally happy. Although that’s the least of my problems, whether people can notice the difference or not, what’s important for me is that I can move without pain and go swimming without any difficulties so I’m perfectly satisfied with the surgery.

Another disabled boy with cerebral palsy from Serbia who is 17 shared his experiences of being stigmatised and labelled by his peers throughout his adolescence. The social stigma he experienced led him to develop feelings of shame:

Surely, I’d love to walk like everyone else and all of that. It’s not easy for me in some situations, and honestly, sometimes I don’t like to see myself in the mirror. But ok, that feeling passes quickly. I am aware that I have to fight and that at the end of the day, I don’t have any other choice.

Surgery represents a form of work on the body that young people undertake to minimise their difference (Mclaughlin and Coleman-Fountain, 2014; McLaughlin, 2017). Of those interviewed, those whose impairments were such to allow them to get very close to an ideal of normalcy through surgery appreciated the possibility of passing as ‘normal’. This passing distanced those children and young people further from the category of disabled as they considered themselves different from ‘really’ disabled people with more severe impairments. The stories collected show that the discourse of ‘normalcy’ originates from both the interactions of young disabled people with wider society and the medical encounters in which impairments are diagnosed and labelled as ‘abnormalities’.