NATURALEZA Y HECHO IMPONIBLE Artículo 2

The interviews conducted provided an abundance of rich data, but it is important that I focus on presenting responses to these key points of concern. The theme of ‘belonging’ can illuminate important responses to the first two of the research questions especially: how does the neoliberal ableist agenda impact upon the psycho-emotional well-being of disabled students? By focusing on the ‘I’ voice in the participant’s responses, we can glean some significant insights into this central question.

Belonging is a term that academics in the field of social sciences often take for granted (Antonsich, 2010). Belonging is a poignant word, and one that is not commonly associated with literature around disability. It is the antonym, exclusion that is more commonly associated with being or feeling disabled, but the term ‘exclusion’ has many forms and therefore I feared I may lose the focus of this theme by stretching it to incorporate the gradations of this term. I want to focus more closely here on the sensations of not belonging – the disassociation, disconnect, break, the isolation and severance, the longing to be part of something that is not quite within your grasp that my participants recalled in their dialogues. Here I follow Antonsich (2010) in examining the concept of belongingness more closely, extolling a more nuanced conceptualisation of the notion of belonging. Antonsich (2010) recommends separating the emotional, visceral and personal feelings of being ‘at home’ in a place or situation (what he refers to as ‘place-belongingness’) and the ‘politics of belonging’; a ‘discursive resource that constructs, claims, justifies or resists forms of socio-spatial inclusion/exclusion’ (Antonsich, 2010:644). The consideration of both dimensions of this concept provides a socially contextualised analysis of my participant’s experiences in this realm. Place-belongingness evokes a sense of comfort, of acceptance. It refers here to a ‘symbolic space of familiarity, comfort, safety and emotional attachment’ (hooks, 2009:213). Being able to claim it, or not, has a colossal effect on a person’s self-esteem (Sanders, 2006). My participant’s testimonies lead me to concentrate more on the former of these two conceptualisations of belonging, as this

96 more appropriately addresses the second research objective. Some of my respondents expressed feelings of comfort and security in their daily lives. However the consequences of feeling excluded – intimately, personally, spatially and intellectually – are explored in relation to my participant’s data. It is not surprising, then, that this was one of the key themes in my participant’s stories.

5.2a High expectations

Kate’s testimony reflects a real sense of emotional attachment and rootedness to her home life. On reading her account, we are provided with a groundedness and feeling of safety that comes from her family’s firm support. She has a strong sense of self-conviction, fostered partly by her family’s belief in her. She states,

I’m very close to my siblings, they all played a huge part in who I am... [My sister] helped care for me when we didn’t live in an adapted home…without her I certainly wouldn’t have achieved as much as I have in my life.

Kate, p1

Kate immediately identifies as disabled, and appears to hold this identity as a significant part of who she is (‘I’m 29 years old with CP, I use a wheelchair 24/7 to mobilise, other dx’s include OCD,GAD, JIA,TRAPS and Keratoconus’). At age two she was diagnosed with severe spastic diplegia, causing her doctors to report to her parents that ‘she wouldn’t amount to much’. However she seems to have internalised the message that she should ‘prove’ her worth, as otherwise she would be letting her family down.

So through determination and sheer hard work and with the help of my family I learnt to write and speak English, Italian and French. I attended mainstream school from the age of 4 and obtained levels of education others around me doubted I’d ever do. Kate, p5

When I didn’t get high grades I felt like I’d failed anything less to me made it feel pointless… From a young age I measured my success by high grades and if I didn’t achieve these high expectations of myself I would be very upset with myself. I felt being disabled I had to be the best if I didn’t achieve top grades it meant I wasn’t meant to be there.

Kate, p8

Djodjo also protests that he was treated as a ‘superhero’ by some of his peers when first became disabled. Another of my participants, Anton, had similarly high expectations of himself caused in part by his family’s belief that his disability should not be an ‘excuse’ not to achieve. Anton

97 comes from a small village in Eastern Europe, and he states that the fact that he’s doing a PhD means that he’s heralded as ‘inspiration porn’ for others around him. He muses,

My father was quite a driving force in my trying to emulate or surpass the able-bodied people around me…I almost feel compelled to (sighs) live up to those expectations…which ultimately is probably detrimental because it’s not a very healthy motivation is it?

This indicates that for some of my participants, family and peer support caused feelings of anxiety and pressure to over-achieve. Heather reveals,

My family didn’t fall apart just because their first child had cerebral palsy…My parents just had this expectation that I would do everything that everyone else did… it was quite funny because I don’t think my parents ever realised that I had a disability…they didn’t articulate my disability as negative.

There was this kind of thing, though, even though it was never articulated by anybody in my family at all, there was this kind of thing that if I didn’t perform incredibly well I’d always get sent back to special school…. You have to justify, you have to really over-perform to be seen as a credible person in that respect.

Heather, p12

This attitude suppresses the emotional labour in trying to ‘emulate or surpass’ able-bodied people in a world that is often ignorant of the needs of disabled students (Bunbury, 2018; Morina, 2016; Goode, 2007; Sanders, 2006). It discounts the extra emotional energy needed to battle everyday disablism (stares, tuts, inappropriate questions etc.) and still endeavour to ‘try your best’. Kelly also reported similar feelings of having to perform, often causing her to do ‘all-nighters’ where she worked tirelessly through the night to ensure that she met the grades that she was expected to achieve in order to stay in mainstream education. Here we can see the effect of compulsory able-bodiedness (McRuer, 2006) on my participants, coupled with the internalisation of neoliberal values. Combined together these can have a profound effect on the emotional, psychological and physical health of a student.

This attitude is noticeable across wider public arenas too. Crazy Chorister mentions her annoyance at the reaction from the public to the Paralympic Games. She states that there is a fallacy amongst the non-disabled that the games

…dramatically improved the perception of disability in the UK – it couldn’t be further from the truth.

98 It denotes that prior expectations of disabled people were that we were all inherently inferior, and now we are held up against the talents of disabled athletes and again judged as sub-standard (Kearney et al., 2019). ‘They can do that, and their impairment is much worse than yours; why can’t you?’

5.2b Poor prospects

Lilly felt a high level of support from her family, but this translated to her as feeling mollycoddled by them. According to her testimony there was little infrastructure to support disabled adolescents in Iran at the time that she lived there, and she was not encouraged to participate in social activities by her family. This points to a negative effect of being or feeling supported. The lowered expectations of disabled students, coupled with the often over- protective reactions of family and friends, often result in low self-esteem for the disabled student (Sanders, 2006) and a subsequent ‘life time of under achievement and a failure to reach their full potential’ (Sanders, 2006:181). Lilly, as you may recall from her pen portrait, was injured in a car accident at age thirteen, right at the cusp of her adolescence. Being prevented from socialising with friends and developing her sense of self at this monumental time must have been problematic, and potentially affected her sense of belonging in a world that was no longer accessible to her. My own family reacted in a similar way to my disability, wanting to protect me as much as possible and I felt like I had to prove to them that I could be trusted to venture out alone again. I recently applied for my doctor’s notes from the years following the accident, and it said in them, ‘Julia holds unrealistic expectations for the future with regard to resuming her studies; at present she has difficulty dressing herself and she will need psychological support when she realises the extent of her difficulties’. This could be seen as a form of ableist violence (Campbell, 2001), however benign the intentions were. The subject of benign ontological violence is echoed in Abdu’s story. He is the first son in his family, and following Eritrean tradition he is greatly respected and valued by them, and they have high expectations of him. He was brought up with a lot of confidence and felt very much part of the society he was in. He states that up until he attended boarding school he was never aware that his blindness was an issue. Whilst at boarding school Abdu became aware of his blindness as an identity, and formulated strong bonds with others in his school. He is now a lecturer in India, and has had many accomplishments. However, his mother seems to have absorbed the medical imperative to ‘restore’ her son’s eyes:

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I mean, I do not know why, I mean I feel like I have done my best with my life and she knows that I am better than her other children and even better than most other people my age…she really understands this but she still wants to restore my eyes.

Abdu, p4

We can see here the conflation of belonging and exclusion, and the imposition of societal values on the feeling of place-belongingness. We can hear the hurt in Abdu’s tale, and have a sense of the frustration he must feel at still being seen by his mother as less than perfect. He is torn between wanting to be a good son and respect his mother’s wishes, and wanting to rally against this display of ableist behaviour. The politics of belonging, as Antonsich (2010) refers to it, is complex and can have a poignant effect on the psycho-emotional well-being of a person. I do belong (within my supportive network of family/peers), and yet in many important ways I do not. The reminder that society is often blatantly hostile towards disabled people impinges on any place-belongingness my participants felt. The personal, existential sense of being ‘at home’ is thwarted by society’s negative depictions of disabled people.

Crazy Chorister reports experiencing acts of external violence by local youths in her village, where they called her names, imitated the way she walked and threw stones at her. Kelly too felt ostracised at school because of her disability. She says in her email testimony,

The kids in Ms. Russel’s class didn’t like me, and the only person that spoke to me was Mrs. Allard. She had to. She was the paraprofessional.

Kelly, p1

When I conducted a Skype interview with her to clarify some of the information in her story, she elaborated on this point. She wanted to read what she refers to as a ‘cerebral palsy speech’ to her classmates in an effort to educate them, but she was prevented from doing so by her teacher on the grounds that it would ‘disrupt the class’.

It was only when I was in the sphere of the regular Ed that [my CP] became a negative. It became a stigma. When you’ve got like thirty kids and they’re like noticeably afraid and kids are very honest and they’re like physically moving away from you, how else are you going to try to entice them or engage them to be your friend or even just interact with you if you don’t explain, you know, ‘I have CP, you can’t catch it, it’s caused by lack of oxygen in the birth canal and from being premature…’

Kelly, p64

The notion of feeling like it is the disabled person’s responsibility themselves to educate people about their disability can be seen as an element of emotional work (Hochschild, 1983) and impression management (Goffman, 1963) and can be seen as a consequence of wanting

100 desperately to belong. The notion that Kelly is a ‘discredited’ person (Goffman, 1963) impedes her sense of belonging to and in a class of reportedly non-disabled others. By reading her speech about the causes of cerebral palsy Kelly is attempting to ‘break through’ (Goffman, 1963:69) – where she is ‘attempt[ting] to move on to a more personal plane where [her] defect will cease to be a crucial factor’. Clearly she wanted to tell the class as a whole not to be afraid of making a personal connection with her. Her teacher should have been the one to do that. Kelly also recounted literally being ousted by her family when she didn’t get funding to pursue her PhD.

It has broken my family apart because I lost my PhD funding, and then I was forced out of my home…. I come from a family of entirely non-disabled, and my twin and older sister were long gone and successful and having jobs and going here there and everywhere and I was stagnant because I was trying to work within the confines of a system that wasn’t set up for me.

Kelly, p20

We can see that Kelly recognises that she is locked into a system that does not cater for her needs, and this, not her CP, is what is impeding her progress towards the life that she wants for herself. This sentiment is reflected in the United Nations Convention on the Rights of Persons with Disabilities (CRPD) preamble:

Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.

Kelly is rejected by her family, was rejected by her peers and, as we will see when we continue with her story, was rejected by her university. The thread of rejection runs sorely through her account.

Patrice reportedly often felt that she didn’t belong at school, due mostly to the failure of her teachers to recognise that she had additional needs that were not being supported. Patrice chose to tell her story via email, and it was littered with spelling and grammatical mistakes that could easily have been diagnosed as dyslexia. Had this been noticed she may have been supported to achieve in the standardised grading system favoured by schools rather than being forced to struggle alone. Reading her story ignites a profound sadness in me, and I get the sense of her feeling forgotten and left behind. She says,

I always felt a shamed of my poor reading, writing, spelling and math skills. Most of my life I struggled in school got bad grades could not figure out why. Nobody tried to

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understand me. in school I felt like an outsider it’s a scary thing when you can’t explain the help you need to people in a place that is suppose to be a resource of learning for a child I just felt nothing but judgement. Not one school staff member ever brought up the subject of dyslexia to the table.

Patrice, p2

Patrice’s story is a poignant indicator of how ableist imperatives can do myriad harm to disabled students, shattering their sometimes fragile self-worth with the weight of meaningless obligations. This theme merges with others that I have identified such as lack of resources and internalised ableism, illustrating the precariousness of separating the threads of intricate stories. I feel the theme of belonging encompasses this tale well as it clearly affected her sense of security in the school setting.

Ben also reports that he never felt like he properly ‘belonged’, calling himself the ‘black sheep’ (which is an interesting racialized term) of his family. In his email testimony he reveals that he never felt part of social groups; that he was always ‘falling out’ with his peers and regrets not maintaining long-standing friendships. He attributes this to his late diagnoses as having ADHD. Just after he was diagnosed, he also felt troubled by a sense that was not welcomed into the ADHD clique either;

Suddenly there was an odd ADHD snobbery, and they explained that I didn’t have a diagnosis, if I wanted one, I needed to attend the clinic and be diagnosed there. It felt like all my new understanding of myself, my new identity had been ripped out and it felt like I didn’t belong. It was very odd to feel rejected by the very people who were acting and being exactly like me, in the room before they questioned my diagnosis I have never felt so comfortable in a room.

Ben, p6

This relates well to the hierarchy of impairment (Deal, 2003; Reeve, 2006) and the phenomenon of disability disavowal which we shall discuss later.

5.2c Other Others

Here we can evoke Antonsich’s politics of belonging, and consider how the barometer sways towards exclusion with alarming regularity for students from minority backgrounds (Conron & Wilson, 2019; Meyer, 2003; Pal, 2011). The experiences of other Others (people from ethnic minorities; ‘queer’ students; and adopted children) will be highlighted in this brief section of the study as three of my participants indicated that their membership of these stigmatised social groups had a significant effect on their feeling of belonging.

102 Shunuli was ‘transracially and transnationally adopted’ (Shunuli, p31) by white, middle-class, heterosexual American parents. She was raised, along with her (also adopted, Chinese) sister in an area that was predominantly white. Her parents are evangelical Christians and politically conservative. This suggests that she has felt a level of exclusion from a very young age. She is consistently scathing of her privileged background, whilst recognising the advantages that this gave her. She talks about her upbringing in a politicised way, and seems to take strength from her membership of marginalised groups. Shunuli discloses that she had been severely bullied at school by friends and teachers, but she was prevented from leaving by her parents because of the reputation of the school. Additionally, when she was first diagnosed as autistic she was told not ‘to tell anybody about this because it will just be another excuse for them to bully you’. (Shunuli, p38). Prior to diagnosis, the only narratives of disability she had access to were of shame, concealment and restoration.

The only other acceptable way to be disabled is to be somebody’s inspo porn…overcomer, overachiever… then you have to hide disability and not talk about it which is not possible because it only increases the shame. Incredibly pathologising. Shunuli, p38