B. Perception of disability as a negative difference

Oliver (1996, p.5) claimed that disability identity is constituted of three core elements: the presence of impairment, the experience of socially imposed barriers and self-identification as a disabled person. Watson (2002) questioned the existence of disability identity as something that is stable and decontextualised. His study revealed a multiplicity of disabled young people’s constructions of their sense of self. Many of them had rejected disability as identity through actions and narratives that help them to blend into the non-disabled category and minimise their differences (Watson, 2002).

This rejection of disability as identity results from an understanding of disability as an inferior state of being and a demeaning label. The data from my study suggests that medicine plays a role in constructing the narrative of disability as an individual problem which is best resolved through medical interventions.

A mother of a 13-year-old disabled boy from England shared her experience of learning about her son’s impairment:

Mother: And basically, apart from the skeletal problems, he was a normal, healthy, functioning child. It's just his skeleton that is wrong. And as he [a doctor] said to us, you know, he's a healthy baby, he's just got mechanical problems… And to have somebody say, actually, you know what, your baby is healthy. He's just got mechanical problems, is such a helpful mindset to get into, that you don't have an ill child.

Researcher: So that's framed as something that can be sorted out?

Mother: Yeah, and I think that's the thing, isn't it? He’s just got mechanical problems…It sort of reassures you that they're not ill.

This initial construction of an impairment as a ‘mechanical problem’ formed a core part of the strategy that these parents used to later talk with their son about his condition. For them, to be disabled was to be ill, so they invested effort in avoiding this label:

Mother: And then when we had him, I think one of the things with him was, you know, we’ve never sort of mentioned the disabled word with him. We just said, you know, you're just different. And I think that's one of the problems that, you know, with labelling, that people do like to label people. And you know, we're all individuals and you can't, you can't make a sweeping comment. So I think I sort of pulled all that into play with him. And I wanted him to feel normal. I wanted him to feel like his friends. I wanted him to know that, you know, he was the same as everybody else.

Researcher: And when you mentioned labels, do you think disabled as a word brings up some negative connotations and negative perception of identity?

Mother: Yeah, 100 per cent I think it does. Yeah, I was reading an article and it was saying that they shouldn't call people disabled, or they should call them diff/abled, because they are differently abled. Because disabled implies that you're less somehow. And well, in my opinion, it implies that you're less somehow and that's not true. You're just different.

It is evident from this example that these parents associated disability with severe illness and a devalued state of being. That their son’s impairment was a ‘mechanical problem’ which might be sorted out through medical interventions gave them hope and helped them to distance themselves from the category of disabled. Even though the multiple surgeries their son experienced did not eradicate his impairment, they invested efforts to help their son not identify as disabled with an aim for him to blend more easily into the category of non-disabled and not think of himself as less valuable.

A 12-year-old disabled girl from Serbia was talking about the conversation between her mother and a doctor that went on in front of her:

Well, I heard him [a doctor] and my mom talking and he said that simply it cannot be done for me, that simply, like…like I am a hopeless case, something like that.

In this case, the doctor, when explaining to the mother that the surgery would not bring any benefits, objectified the young girl referring to her only in terms of her impairment, which was ‘beyond repair’ in his view. In the witnessed conversation, the girl was not regarded as a human subject but as a passive object or a collection of broken parts that could not be fixed. Such objectification affects children’s sense of self, diminishes their confidence and even leads to internalised ableism. Internalisation may begin at early age spurred by the messages about themselves that young people receive from others (Smith and Traustadóttir, 2015).