A person with abilities

1. A person with abilities The transition to adulthood of a young woman with a severe physical impairment Nikki Wedgwood

2. Study Rationale • Little research on adolesc (10-18 y/o) or emerging adulthood (19-24 y/o) as significant, transformative and distinct life phases. • Despite the fact that, as a group, 15-29 year olds with an impairment have: • signific lower wellbeing than able-bodied peers on 31 of 38 wellbeing indicators • are at greater risk than their peers of various psychosocial problems •  Concerning because this is ‘make or break’ time in terms of what role people will play as adults in society—or on its margins.

3. Conceptual Framework • This case study explores the potential of studying the impact of disablism on the transition to adulthood of PWI by combining: • sociological theories (cultural & structural perspectives on youth) • a psychosocial framework (ie achieving the normative developmental tasks of adolescence and emerging adulthood) • sociological method (life history research)

4. Conceptual Framework Psychosocial Theory • Erikson (1968) psychological wellbeing depends on successful resolution of eight psychosocial phases of development from birth to death. • Phases include: • identity vs identity confusion during adolescence • intimacy vs isolationduring young adulthood • Unsuccessful resolution of one phase = negative implications for next • successful resolution facilitates positive emotional + social adjustment.

5. Conceptual Framework Structural Theory • However, a purely developmental approach focuses primarily on the indiv • De-emphasises critical influences of society eg impact of disablism. • Fails to critique adolesc + emerging adulthood as social constructions • IE, as a group, PWI fair poorly on the traditional markers of adulthood: • such as employment, independent living, marriage and parenthood • These structural transitions are imbued with disablist values and presumptions

6. Conceptual Framework • Cultural Theory • Views the distinctive cultural space between childhood and adulthood as one in which young people shape their generational identities as active participants through diverse youth cultures and identities • Acknowledges the significance of the body as a cultural marker of youth. Youth develop ids and relate to peers through visual styles based on the consumptions of leisure, clothing and other goods. • Peer group membership significant because it provides: • a safe context within which to experiment with new roles and behaviour—a natural part of the identity formation process) • And has a major influence on a teen’s social and emotional development • provides adolescents with a sense of belonging, status and self-esteem.

7. Agency & Structure • This interdisciplinary approach provides a simultaneous focus on both: • the psychosocial development of the person • the sociocultural contexts in which that development occurs Study thereby highlights both agency and structure. ‘both individual action and social order are enacted in specific situational contexts’ (Giddens, 1989: 23) Disabilism is therefore conceptualised in this study as: • Varying across the lifespan and from one personal and social context to another • a dynamic, rather than static, social structure

8. Method – Life History Case Study • Life History method excellent way to explore both structure and agency: • This is crucial because PWI have agency – they are not ‘passive victims of a society that fails to include them’ (Watson, 1998: 150). • although structures like disablism shape people’s practices, people’s practices also constitute (and reproduce) structures (Sewell, 1992). • Therefore, structures must be conceptualised as enabling as well as constraining human agency (Giddens, 1976: 161).

9. The Study • A single LH case study of a woman with a severe physical impairment • From an exploratory study on the role of sport in the lives of young PWI • conducted in an Australian city in 2008 • Participants recruited via two disability sports organizations • Findings organised around following developmental tasks: • identity consolidation; • achieving emotional and economic independence from parents; • And establishing adult relationships outside the family • including sexual relationships and being part of a peer group.

10. Ella • Ella (20) vivacious and personable • Living in a student college on the campus of a regional Australian uni • Born with no limbs aside from a fraction of one lower leg with part of a foot and three toes with which she writes and operates her electric wheelchair. • Deftly uses her mobile with chin & shoulder

11. Ella • Ella never assumes she cannot do things because she has a severe PI: EC:I just usually do it if I want to do it. I’ll work out some way. The only thing I did want to do was play saxaphone but I couldn’t find a way to do that. Too many buttons! That would probably be about it really. Everything else I’ve managed to do somehow. • Unlike some able-bodied women who assume they cannot do certain things (eg play footy, lift heavy objects) because they are women (Young). • Much of Ella’s life can be viewed as lived and embodied resistance to disablist stereotypes of people with severe physical impairments as weak, pitiful, dependent and passive.

12. Ella • Encouraged by her parents, Ella has spent her life opting into activities • From 7 y/o played trumpet (uni)From 11 y/o Ella has competed in disability sailing, national/international • Aiming for Paralympics 2012 • First person with her impairment in Oz to attend uni

13. Ella • Ella has always attended mainstream schools • Ella reported her experiences as primarily inclusive. • Her level of inclusion depended on educational context and life phase. • Attended a catholic primary school in a country town for four years she ‘never had much fun... the girls in my year were just bitchy little girls.’ • In another town, she really enjoyed attending local govt primary school

14. Ella • Got on well with her peers • Was included in physical activities like soccer and track and field events - wheeling while her classmates ran. • In swimming carnivals event called ‘Swim like Ella’, involving ‘a dolphin style kick and wiggle’ • She jokingly recalls winning every year while her friends ‘almost drowned!’

15. Ella • Many people with impairments attending mainstream schools find themselves socially isolated, excluded and/or bullied • Ella only experienced one instance of bullying at school. • ‘Can’t you guys get a whole friend?’ • ‘almost got bashed by half his year.’ Ella recalls: • ‘it wasn’t exactly a fun experience but I got over it and from then on, because I made such good friends with the guys in my year, if anyone would have said anything to me, they would have got pounded!’

16. Ella • Ella ‘tried to blend in’ to all the friendship groups at high school, pointing out: • She was friends with nearly everyone in her year, bar two groups; • The Skaters who ‘hung out at the skate park and did drugs’ • The Barbies, she got along with in primary schl but who shunned her in high school: • I didn’t have time for them and they thought they could get away with anything with teachers by fluttering their eyelids… some of them were nice enough girls but when they were together they were just a bunch of - not going to say it!

17. Ella • The Surfers—Cool guys whose status was such that they had given themselves a collective name and were friends with cool girls (Barbies). • ‘The Music People’ —‘Granted they might have smoked a bit of pot but who cares! They played guitars …and... I did music class with them, which was good and they were nice people.’ • ‘The Nerds’ • ‘and this random little group that I was part of, like a combination of all’. • group comprised mostly of transient members, (varied 4-10 on any day) • no name or defining feature, suggesting the members had little or no cultural standing or were cultural fringe-dwellers.

18. Ella • Ella’s name for - ‘The Barbies’ - suggests made up of young women whose cultural kudos was derived primarily from their physical beauty. • Most likely Ella was excluded from this group because her body defied conventional physical beauty • no matter how anatomically incorrect they are, Barbies always have arms and legs. • As her peers began developing sexual identities in high school—some, like the Barbies, earlier and more overtly and stereotypically than others—Ella began being excluded from some aspects of high school peer culture for not embodying stereotypical heterosexual ideals • Continued and intensified at uni (emerging adulthood)

19. Ella • Uni life has resulted in lower levels of autonomy for Ella, because logistically, living away from home and attending uni is extremely complex. • Her accomm had to be adapted, though after 18 months, still incomplete. • Ella has a facilitator in class to put her glasses on and take notes. • A set carer takes Ella shopping each week and another cleans her unit weekly ‘which is good – means I can do my fair share of the housework’. • Other carers come several times a day to get in/out of bed, toilet and eating. • Catches a taxi to class.

20. Ella • At the start of uni, Ella had many problems with her carers • Eg only taking her to toilet 3 times a day leading to a urinary tract infection. • Being an assertive, confident person, Ella dismissed her care agency. • Ella refers to most as support workers rather than carers because: ‘few actually care’. Some are downright rude. •   So, many practical problems but also many social problems

21. Ella • At uni the majority of social activities revolve around drinking, • Made socialising more difficult for Ella: • I don’t drink or anything so I don’t do as much socializing as most of my other peers and stuff like that, just because it seems that alcohol goes straight to my head! Yeah I had a few bad experiences with that so I don’t do it anymore! • Even campus sports/leisure groups • ‘are just big booze-ups—they appear all innocent but yeah they’re just a reason to get drunk most of the time’.

22. Ella • Tried going out without drinking but ‘does not bother anymore’ because drunks ‘have a habit of trying to grab the [wheelchair] control’ • Physical safety and harassment are not her only concerns. • Went to campus bar with her 6’ 4” brother because she felt safe with him. • Met a few drunks who ‘were funny to start off with but they went downhill after a while.’ • Ella gets treated as a curiosity, amusement or novelty • Would undoubtedlyprefer to be treated like a uni peer, young woman and/or sexual being.

23. Ella • Ella expresses gender-traditional expectations/hopes for her future: • Well, boyfriend, degree, marriage, kids. No! Who cares about marrying?! No, I want to have a wedding—that would be fun and I’d get to wear a white gown. That would be fun! Spend lots of money on myself—I don’t do that often. I’m getting a bit ahead of myself!... I think the first step would be getting a boyfriend, that would help. I think that’s always a good first step! • Other women with Ella’s type and level of impairment have married and/or had active sex lives and had children • Greater obstacle more likely to be social:‘the problem of disabled sexuality is not how to do it, but who to do it with’ (Shakespeare 2006)

24. Ella • Has friends – is socially included at uni – to a degree • Other limitations on socialising • Occasionally Ella goes to movies etc with uni pals but a major deterrent to socialising off-campus is not wanting to taint her friendships with the burden of care: • ‘there’s no way that I would ask some of these girls [flatmates] to do things I would ask [Dan] to do because every now and then he takes me to the toilet and stuff. Like my toileting involves nothing touchy, yuk or urgh, you know, but there is no way I would ask some of the girls in here just because I try and keep that barrier between – like there’s a difference between like family that are doing care work and friends – you do not get your friends to do care work. Like if I drop something, I will get them to come pick it up but I won’t get them to feed me or anything like that.

25. Ella • Ella reports ‘mostly I just go out with my sister because she doesn’t drink that much,’ they ‘get on really well’. Ella says ‘she’s my sanity.’ • Her able-bodied uni peers, relishing newfound freedoms/indep from family • Ella’s levels of independence and social circles have diminished, rather than increased, upon moving out of home. • NW: And your self-esteem seems pretty good too. • EC: ‘It’s probably taken a hit the last 18 months. I’m a lot quieter than what I used to be. You wouldn’t guess it! But out in public I am a lot shier than what I was just because I haven’t had as much socialising, not going to school every day, being with people every day.’

26. Ella • Ella’s struggles to live independently of her family, along with her limited social inclusion at uni, mean that Ella is not enjoying being apart from her family • Her mental health has suffered as a result: • I don’t think I discovered depression until I came here, being away from home and stuff. Feeling homesick is probably the only depression I’ve felt in a very long time... I probably see my parents a lot more than some of the other people that live [on campus].’ Ella is experiencing an increased desire to be with her family: • So yeah I actually kind of went in reverse. I was a lot more mature when I was younger but when I came to uni I became a lot less mature! … I’m just going back to childhood. I think because like the home sickness feeling and stuff brings out the child in you anyway ‘I want my mummy!’

27. Findings • Ella’s Herculean efforts to participate in and be socially included in all facets of life/society have become an important part of her identity. • She is understandably proud that she participated in all the physical activities at school, that she ‘had a go’ and this is part of the story she tells about herself/about who she is: • I actually did a fair amount [of physical education] because some people [with impairments] would be just sitting on the sidelines going ‘I can’t compete.’ But I tried. I think I made an idiot of myself a few times but I don’t care. • Yet she only has so much ‘agency’ to define herself in a disablist society.

28. Findings • Ella is seen first and foremost by others as a person with a severe physical impairment: • Like, no-one knows [the name of my condition]. People just go, ‘Isn’t that that girl that doesn’t have any arms or legs?’ I don’t have a problem with that. It’s the best way of describing me. • Able-bodied people often view Ella in disablist ways by awarding her for, or marvelling at, her many impairment-defying feats (ie supercrip). • On her second day at uni one of Ella’s lecturers announced to her class, • ‘Now this lady here is one of the bravest people I know’.

29. Findings • Ella does not mind being viewed in this patronising way: • I’m actually kind of used to it. It doesn’t faze me. Like every now and then like if it’s in front of people my age I get embarrassed because like I just see myself as one of the other people but in front of older people I’m not really fussed any more, I’m just used to it. • Ella faces the dilemma of trying to develop an identity as a person with abilities despite her physical impairment, in a world where she is viewed primarily as a person with a physical impairment, despite her abilities.

30. Conclusions • Ella may have the power to define and present herself to the world as a person with abilities and to think of herself ‘as one of the other people,’ • Yet she only has limited agency to influence how she is viewed by most able-bods and her subsequent levels of sexual and social inclusion. • Ella’s case study also shows that the impact of disabilism was not constant from one context to another nor from one life phase to the next. • In this way, the life history case study allowed the relationship between Ella (as an embodied, agentic individual) and disabilism (as a powerful social structure) to be conceptualised as interwoven and dynamic, rather than distinct and static.

31. Implications • So…where to from here? • Whilst it is one thing to say disablism negatively impacts the lives and well-being of PWI it is another to tease out how this happens in everyday life. • Life history method, combined with a structural, cultural and developmental understanding of transition can help tease this out. • Funding for 3 year longitudinal life history study of the Transitional experiences of 100 young PWI • WATCH THIS SPACE!!!