Making me with others-gendered meanings of youth and youthfulness among young female disabled assistance users

ABSTRACT

The paper explores how disabled girls with Personal Assistants (PA:s) in a Swedish context constitute themselves as subjects in relation to intersecting meanings of age, gender, space, time and disability. The results illuminate the importance of social spaces and social relationships for the girls’ forming their sense of selves. Similar to ablebodied girls, disabled girls’ transition into adulthood can be viewed as a yoyo-transitions, entering and exiting different adult positions several times. Unlike ablebodied girls, they enter adult positions not commonly associated with youths, such as work leadership positions in relation to adult employees, such as the adult PA. This implies that they to some extent manage their own process of becoming an adult. Our findings stress the importance of recognition and awareness of disabled girls transition to adulthood as different not pathological to nondisabled girls’, where consideration is taken both to individual needs and preferences of female assistance users.

Points of interest

• All girls need to develop their sense of themselves to become women

• Disabled girls with personal assistants find it difficult to live ordinary lives as girls without the support of external personal assistants

• With the help of personal assistants disabled girls can participate in the places and with the people they choose themselves

• The relationship with the personal assistant put demands on the disabled girl to become a woman faster than abledbodied girls, in the same time it can hinder the girl’s development into a woman

• It is important for practioners and policymakers to recognize the dual role of personal assistants in disabled girls lives

Keywords:

• Personal assistance
• transition to adulthood
• intersectionality
• identity
• space
• disabled girl

Introduction

In this paper we explore how disabled girls with Personal Assistants (PA:s) in a Swedish context constitute themselves as subjects in relation to intersecting meanings of age, gender, space, time and disability.

Building upon insights from critical developmental psychology, disabled girlhood can be seen as performative, contextual and depending on doing certain expected, normative developmental tasks which are highly gendered (Burman [1994] 2016; Sjöberg and Bertilsdotter Rosqvist 2018). But those normative developmental tasks can also be seen as part of what McRuer (2006) has theorized as the working of ‘compulsory ablebodiedness’, reproducing ablebodied privilege. Research has shown the possibilities of involvement of professionals and services to assists disabled women to increase their self-confidence and independence (see for example Xenakis and Goldberg 2011). However, there are problems with interventions aimed at assisting disabled youths in their transition to adulthood, relying on unproblematized notions of age, development and an ablebodied adulthood.

Background: contextual and intersecting notions of disabled girlhoods

Commonly girls’ adolescent journey is represented as a ‘quest for self-definition’ taking place in ‘a social context that profoundly shapes girls’ experiences’ (Johnson 2014). Developmental tasks of girlhood consist of building up certain resources; such as educational, social and relational (c.f. Bertilsdotter Rosqvist and Brownlow 2017), in a particular pace and space – neither too slow nor too fast (cf. Sjöberg and Bertilsdotter Rosqvist 2018), but also to develop a certain embodiment. Affective labor and emotional management can be seen as a particular central developmental task of girlhood (Bertilsdotter Rosqvist and Brownlow 2017). Disabled girls are commonly expected to do affective labor as ‘happy objects’ (Todd 2016), or present themselves as ‘self-assertive, individualistic and high-spirited persons’ (Limaye 2008) and challenge able-bodied perceptions of disability and disabled identities (Thorn 2016; Limaye 2008; Todd 2018). Research concerning possibilities for disabled girls to overcome and challenge stigma and overcome challenges of disability, stress the importance of context (see ex Wallace, Karangwa, and Bayisenge 2019). For example, disability community spaces may enable challenges to abled-bodied perceptions and formulate alternative body imaginaries which are rarely seen in contexts dominated by ablebodied people (Skinner 2018). Among challenges to the ability/disability divide, disabled girls’ strive for being acknowledged as ‘just a girl’ (Pearce, Paik, and Robles 2016), including strategies to downplay the impact of onés disability and rather accentuate the interweaving of other complementary and contentious discourses (Chappell 2017).

The strive for being acknowledged as ‘just a girl’ (Pearce, Paik, and Robles 2016) illustrate tensions in disabled girlhoods in relation to discourses of femininity and girlhood, where a discourse of disabled girlhood sits uncomfortably between on one hand ‘extraordinariness’ (c.f. Garland Thomson 1997) of disabled girlhoods and disabled girls’ bodies and minds – what Todd (2018) refers to as ‘disabled exceptionalism’, on the other hand ‘ordinariness’ of disabled girlhoods. This means that disabled girls face the same developmental needs and tasks as ablebodied girls, however their development is commonly measured in relation to ideas of ablebodied (gendered) developmental tasks of youth – where disabled youth developmental trajectories are commonly invoked as not a different development but as a pathological development (O’Dell, Brownlow, and Bertilsdotter Rosqvist 2017). For example, Limaye (2008) have argued that ‘the limitations imposed by the impairment, combined with the environment to which they are exposed, may not be conducive to normal development’ (Limaye 2008). Other researchers have either stressed that experiences of disability and disabling environments (including attitudinal barriers) may result in more ‘incomplete’ transitions to womanhood (Bertilsdotter Rosqvist and Lövgren 2013) or a position as eternal girls, never really socially recognized as ‘full adults’ (cf. Starke, Bertilsdotter Rosqvist, and Kuosmanen 2016).

In relation to different kinds of barriers towards a successful transition to adulthood, both individual traits such as self-awareness and personal empowerment (Lindstrom et al. 2019) and self-determination (Doren and Kang 2016) has been stressed as important buffers to negative school-and career-related adjustment, but also different social support initiatives to facilitate disabled girls’ participations in recreation activities (Stride and Fitzgerald 2011). In the same time, as both individual traits and social support has been stressed as enablers in relation to barriers and hinders, the ‘urge’ for normality which is brought to light in narratives of pathological development must be questioned. In particular, individual enablers easily reproduce what has been referred to as ‘overcome-narratives’ of disability (McRuer 2006), which among others stress the possibilities for disabled people not to let their disabilities ‘preclude’ ordinary activities of ablebodied people (see ex, Dantas, Silva, and de Carvalho 2014), rather than questioning the ablebodied-centered basis of normative development. On the same line, disabled girlhood is commonly represented as ‘supplementary’ in depictions of contemporary girlhood (Todd 2018).

Disabled girls are commonly represented in research as ‘hidden voices’ (Whitlow, Cooper, and Couvillon 2019), to be brought ‘out of the shadows’ (Campos Pinto 2016) by the researcher. Stienstra (2015) argue for the importance of use of intersectional approaches to disabled girlhoods. In addition, Hill (2017) stresses the value of scrutinizing disabled girls’ self-representation practices, and thereby challenge dominant (such as the ablebodied) framings of disability and girlhood. Benjamin (2002) explore the ‘identity work’ of a group girls, all of whom had been identified as having ‘special educational needs’ in a mainstream school in the UK, discovering how the girls ‘position themselves in relation to the subject ‘special needs student’’, stressing that both meanings associated with femininity and disability in combination of contemporary schooling practices works ‘to produce a constrained range of subject positions around which the girls have limited room for manoeuvre’. Ferri and Connor (2010) have explored girls’ own perspectives of life in and out of school, understandings and negotiations of their ‘multiple subject positions’ and how they ‘actively and creatively work to resist these constraints’ (Ferri and Connor 2010). Focusing on the association between belonging and identity, Merucci (2014) have noted the importance of sense of belonging to a group of disabled peers, where through ‘sharing emotions and body sensations in the peers group, the young disable person makes the experience of multiple forms of belonging (belonging to a gender, to a generation, to a family)’. Thus the living experience of ‘belonging to a peer group becomes an essential tool in changing bounds with peers and with family members on the way of becoming a dependent adult’ (Merucci 2014).

Gobo (2008) have explored how disability is being produced in the interactions between the disabled person, ablebodied people and in social, organizational and physical environments which are not designed for disabled people, stressing disability as socially and organizationally constructed before it becomes a disability, where disability is slowly and routinely constructed through organizational processes (Gobo 2008). An example of such an organizational process is growing up with personal assistants. In Sweden, personal assistance is included in the Swedish disability legislation, the Act Concerning Support and Services to Persons with Certain Functional Impairments (SFS 1992/93:159). When the LSS act was introduced in 1994, the overall intention of Swedish disability legislation was to ensure disabled people equal opportunities and full participation in society, in which personal assistance is intended to be an individualized support obtained by a limited number of people. Inspired by the independent living movement, PA underline the individual’s right to live independently (Ratzka 2013) by emphasizing core values of self-determination and choice (Larsson 2008). Certain so-called basic needs: practical help with personal hygiene, meals, dressing and undressing, or communicating with others must exist for, personal assistance to be granted at all. In order to obtain personal assistance, the individual applying for support, has to undergo a social needs assessment. If a person has been considered to have basic needs that exceeds 20 h/ week, personal assistance can also be granted for other needs, e.g. to be able to participate in leisure activities, meet friends, etc.

Previous studied has demonstrated that personal assistance has led to an increased quality of life and previous studies with both children and adults (Skär and Tam 2001; Hultman, Forinder, and Pergert 2015; Egard 2011) show that the availability of individually adapted support, where there is a well-functioning relationship between assistance user and assistant, is a prerequisite for self-determination. Even when assistants are considered as replaceble it is important that there is a good and functional relationship between assistant and assistance user (Skär and Tam 2001; Hultman, Forinder, and Pergert 2015). This includes to manage an ambivalent power relationship, perhaps in particular ambivalent when it comes to an adult assistant and a young assistance user. The assistant is on one hand expected by the disabled youth to pay attention to their opinions and act in accordance with what they want, not make decisions on their behalf, acting as parents (Skär and Tam 2001), on the other hand, being an ‘extended me’, both physically and mentally (Egard 2011). The presence of assistants acting as parents may also become barriers in relation to interacting with friends (Skär and Tam 2001; Hultman, Forinder, and Pergert 2015). In contrast to many other countries, many parents in Sweden are employed as paid PAs for their disabled children (Olin and Dunér 2016), which may pose challenges to some developmental tasks of youth, such as development of autonomy from parents, including the timing of attainment of markers of adulthood (Leiter and Waugh 2009).

Method and material

Given the scope of the article and the complexity of the topic, we chose to limit the number of participants to four young women. The intention of the interviews is to provide nuanced and in-depth accounts of different aspects of the interviewee’s life world (Kvale and Brinkmann 2009). The participants were selected by virtue of their capacity to provide richly textured information, relevant to the phenomenon under investigation (Morse 2000).

This article is based on analysis of 11 individual interviews with four young women. The interviews are part of a larger study (first author), which included 33 individual interviews, with 10 young men and 6 young women, between the ages of 16-21 years. The interviews with the four young women were selected from the whole data set because the content of these interviews were more extensive, detailed and self-reflective, than the other interviews.

Three upper secondary schools were selected for recruitment of participants. Apart from providing mainstream education in regular classes, the schools have separate classes for students with physical impairment. Two of the schools were located in the outskirts of urban areas and the third school which was located in the center of a small town. Contact persons at both schools and user organizations either spread information about the study or invited (the first author) to provide oral information about the study. Overall, it was difficult to recruit young people to participate in the study. A representative from one of the major disability organization explained that many of their members were reluctant to participate since they feared that it would have adverse consequences for their right to obtain personal assistance. Despite the fact, that both schools and disability organizations were approached in the recruitment process, only ethnic Swedish women wanted to participate.

The study has been approved by the regional ethical review board in Stockholm (2012-671/31-5). Written informed consent was obtained from all participants. Consent was treated as an ongoing process, with particular emphasis placed on sensitivity to possible negative reactions. To ensure anonymity, the names of the participants are pseudonyms. The participants met the interviewer (first author) at a place which they choose, in this case, either at school or at a coffee shop. Each interview lasted between 30-80 min and was recorded and transcribed verbatim. The participants met the interviewer at least at two separate occasions, but two of them, Maya and Hedvig met with the interviewer for three and four separate occasions. This allowed for both interviewer and participants to bring forth additional questions or follow up discussions based on the previous interview.

Participants

The selected young women have different types of physical impairments, such as cerebral palsy (CP) or chronic muscle weakness, which has entitled them access to personal assistance in varying degrees. Some of their personal assistants (PAs) are external, which means they are not family members of the assistant user. Some are family members (mostly parents).

Hedvig is 19 years. She attends the second year in a class for students with physical disabilities. She lives in an urban area with her parents and two sisters in a house. Her parents work as assistants during the weekends but in school she has external assistants. If her personal assistants are unable to come to school, she is not able to go to school either.

Sofia is 16 years. She attends the first year in a regular class with non-disabled students, but she gets assistance from student aids that help students that attends a class for students with physical disabilities. Sofia lives with her parents and her twin sister in a house which is in the outskirts of an urban area.

Helena is 16 years. She attends the first year in a class for students with physical disabilities. Helena is an only child. She has access to student accommodation where there is staff available around the clock. At the student accommodation both female and male staff attend to the different needs of the young people living there. At school she has access to student aides. At home Helena only has external female PAs.

Maya is 18 years. She attends the second year in a class for students with physical disabilities. She is an only child and lives in a flat together with her mother and her mother’s male partner. She lives in a small town which is located approximately, an hour car ride from school. She has both external female PAs and her mother as PA. She brings her external PAs to school, but if they are absent, she gets help from student aids.

Analysis

A qualitative thematic analysis was employed, in which codes, subthemes and themes were driven by data (Smith 2004), in which the starting point was an inductive coding with an intersectional lens (Braun and Clarke 2006). The interview transcripts were read through several times by all authors and preliminary themes related to interview extracts were noted in a common document. The analysis is focused in on two broad themes; social spaces and relationships.

Findings

Making room for me

The first of the two interrelated themes, making room for me, shows the spaces and places in which different types of youth identity is displayed and re-enacted. This is discussed in the subthemes; Teen places and spaces and Interdependency with or without others. Having access to external female assistants enable the young women access to some of youth places in which they can experiment with and perform different kinds of ‘making- me’ processes. Being a youth and to become an adult is also associated with certain age-adequate locations of development (c.f. Burman [1994] 2016). This includes separation in time and space from one’s parents and parental home and the ability to locate oneself as an independent youth within spaces associated with youth such as the school. In the case of the interviewees, spaces dominated by ablebodied youth, such as the school, and spaces dominated by disabled people, such as spaces associated with the disability movement, are brought forward as central to the positioning of oneself as a youth, which enables claiming an independent youth identity. The access to those spaces is conditioned by access to, in particular, an external PA.

Teen places and spaces

Access to external PA enable the girls to become more independent from their parents and make it possible for them to do things separate from their parents and the rest of the family. Many of the girls express a need to be in their own private sphere. The expressed need of a private space concerns both physical and emotional integrity.

I get a little more freedom, I get more independence, because without my personal assistant I am dependent on my mom and dad and that makes me very restricted when they [the assistants] go home for the day. It’s that I can be myself, it’s independence I want. I wouldn’t do without a personal assistant (Sofia)

Helena says that there is a difference in being a teenager and child. Today as a teen, there are more situations in which she does not want to bring her parents. When she goes to the shopping mall she prefers to go with her external assistant since the PA let her have her privacy,

Then we get help with what we [me and my friends] need help with and then she or I have our phones, so usually the [assistants] leave us. If we are in a shopping center, then they usually go for a walk around the stores … And then we get in touch with them, when we have finished talking or are done with what we are doing (Helena)

For Hedvig it is important to find places where she can be on her own and have fun and with her friends. School is that kind of place - a well-known environment in which she has friends and is able to do things on her own that she likes. At the same time participation in school activities is not self-evident for Hedvig, but is more described as special events, which reflect school as a physical environment which is not designed for disabled people (c.f. Gobo 2008).

I like a lot to be here at school. I do not want to miss any class or if they do something. I miss all the fun in school, if I am at home from school. So it feels boring, or if they are going on a fun visit then I try to avoid having a sleep-in, in the morning. I will be here at school, I will arrive at. 8.15. I feel like I want to be at school all day, until I leave (Hedvig)

The ‘making me’ process (as the active subject in charge) becomes harder with her mom present as an assistant in school and it becomes more difficult to find the ‘right Hedvig’. Hedvig explains:

When my mom works [in school], /---/ … then I am very unsecure, if I can’t find the right self, the right Hedvig, then I find only ‘the scared Hedvig’, so then it feels unusual.

In Hedvig’s case school is a place of youth autonomy, where fun and school activities are described as special events that she does not want to miss. It is even a place of potentially autonomy without parental interference. Even if Hedvig under specific circumstances at school, such as when her mother is acting as her PA, becomes the ‘insecure Hedvig’, being in school is important for her. School as a place for making me-process can be both limiting and enabling depending on who is with her. However, the interrelational aspect of PA does not change the function of the space as much as the function of making me-processes.

Hedvig also likes to go to a youth recreation center at her leisure time which offer both structured activities such as; music production in a studio, playing instruments and gaming, as well as providing spaces where teenagers can sit down and talk, have a snack or a light meal. She goes there on a regular basis, but which days she goes there depends on the type of activities that are available as well as access to external PAs.

My everyday personal assistant only works on weekdays and sometimes in the evenings, if I’m going to the youth recreation center or being with a friend. On Mondays there is theater [class] that I usually go to. Then, the man [at the youth recreation center] is theater leader and has theater group with us. So now, when we do that play, it’s a lot of fun with theater. Then one can get into the theater world. So, I like to hang out there on Mondays (Hedvig).

The PA can be understood as an entrance ticket to different places and spaces with a special availability regarding days and times. For Hedvig the PA does not just make it possible for her to participate in an activity, the PA regulates the entrance to a whole new world – the youth world of theater.

For Sofia it is important to have a private space of autonomy – a place of her own, where she can go and do her business without anyone interfering. In Sofia’s case, her commitment to the disability movement has added a valued dimension to her self-identity. Being part of the disability movement has made her proud of her disabled identity, which enables her to consolidate her identity of being a young, active, caring and self-reliant girl, with her identification of having CP and struggling for the rights of disabled people. This proud me-position is contrasted in the citation with being ‘this silent girl’.

I got involved when I was asked if I wanted to join the board. I was definitely not engaged before, because then I didn’t care about anything, kind of… Then I was this silent girl who didn’t say what I thought was right and what I thought was wrong. It is not wrong to have Cerebral palsy. There is nothing wrong with having a disability. I’m kind of proud of it, or how should I say… If I had not had my CP injury, I would not have been me, it’s as simple as that (Sofia).

Sofia wants to keep her involvement in the disability movement separate from other parts in her everyday life. Being involved in a disability youth organization and elected as a board member makes her an important person, since she acts as a representative for other disabled youths. The disability youth organization becomes an important place for developing a positive identity, where the otherwise dominant role of the PA can move into the background.

It is mine! I do not want people to be involved and know what I am doing. It’s my place, it’s my meetings, and it’s my mission. I want to keep it for myself. I just tell the assistants when to write something [take notes during meetings] or when I need to go to the toilet. I also have my privacy, which is my thing… It is fun, you get so much out of it. It’s the best I’ve done - gone there. You can have an influence, so that society gets better too. I meet politicians, write in the media, pursue issues and act as an influencer (Sofia, age 16)

But claiming a positive identity as an active and self-reliant girl, as a ‘influencer’, can also be a struggle, especially with, the more or less, constant presence of a personal assistant. For Hedvig it took time to feel comfortable with having personal assistants around. When she was younger, she did not fully understand the concept of personal assistance and their presence made her feel different from other children. Today, as a teenager, she understands why she has assistants, she is comfortable with having access to assistance and it is part of her being ‘just myself’.

Now, when I have my personal assistant, I look forward, and I’m just myself. I think forward all the time. I feel companionship with my personal assistant. When I was a kid, I felt it was a little unusual to have a personal assistant. I think I was scared and worried about having a personal assistant. But now when I am older and seen life, then I realize what I want to do, I do not wonder why, and now I can be more outgoing (Hedvig)

Now when Hedvig is a teenager, it’s easier for her to position herself as an active subject in charge of the relationship with the PA.

Interdependency with or without others

Unlike their ablebodied peers, the girls need assistants in order to get access to certain spaces, which make access to those spaces conditioned by time. This illustrate how an impairment play out differently in different ‘crip times’ (Samuels 2017). As Samuels puts it, crip time ‘is time travel’ and ‘broken time’. As time travel, disability ‘have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings.’ Where to ‘occupy the bodies of crip time’ is to know that one is ‘never linear’, never can live in a ‘calm straightforwardness of those who live in the sheltered space of normative time’. As broken time, ‘it requires us to break in our bodies and minds to new rhythms, new patterns of thinking and feeling and moving through the world. It forces us to take breaks, even when we don’t want to, even when we want to keep going, to move ahead’. In line with Samuels’ conceptualization, sometimes the girls don’t have enough external personal assistants to cover for all of the time they have been granted personal assistance. For Sofia – it creates a broken time-situation in which she feels that she loses her freedom. Her ability to self-determination and autonomy becomes limited since she has to consider the needs of her family members. Lack of external assistants makes negotiating time frames become important both in relation to external assistants as well as in relation to parents. If Sofia could decide, she wish that she only had external assistants, so she did not have to compromise with her needs.

Now I don’t want my mom and dad, I’d rather have an external assistant around the clock. When I have a personal assistant I can decide fully how I want it. When I have my mother or father, it is more that we do it like this - I can’t do it now, you have to wait a bit … It will be a bit more on their terms too (Sofia).

Negotiating time can also be about getting an external assistant to work at a particular occasion, for example, being at a party or hanging with friends, the young women want their external assistants to be flexible with their work hours. Nevertheless, absence of preferred assistants, can also imply being forced to either cancel an activity or accept being accompanied by a non-preferred assistant, such as a parent. For example, Hedvig does not have external assistants during weekends or holidays, instead her mother or father work as a PA. When the interviewer and Hedvig talked about this subject she seemed a bit uncomfortable and is careful not to blame her parents for the situation at hand. When they wish to go to places that she does not like, in this case, a museum, she is willing to come along and try to find alternative things to do while her parents watch the exhibition.

If it is nice weather, then we are outside. We usually go to our country house or we are at home, it doesn’t matter much. Either we go out to the countryside or we are at home and find something [to do] - go to a museum. I am not so fond of [it] but [swallows] I like to take a coffee at the museum. I usually play with my mobile or play a game when they look at the exhibition, so that, so it depends (Hedvig)

However, due to difficulties in recruiting external assistants, Hedvig is living a more family-oriented lifestyle. Unlike Sofia, her activities often include her parents. She does not mind going to the gym with her father. The only time Hedvig feels uncomfortable is when her mother accompanies her to school as PA, forcing her to time travel backwards, from a position of independent youth to a position as dependent child. In school she wants to be by herself- socializing with her friends, stressing that if she would have the opportunity, she would spend more time with her friends, and do activities without her parents being around.

Transgressing disabled youth paths

The final main theme, transgressing disabled youth paths, deals with the limitations of being young and disabled, underlining differences in experiences between being an ablebodied young woman and a disabled young woman with PA. This is exemplified in Making friends, limits of friendliness and friendships, Negotiating emotional space in making-me processes and Transgressing ablebodied youth path into disabled adulthood.

Making friends, limits of friendliness and friendships

Another central process is forming onés sense of identity as a youth; finding and making ‘myself’ as a girl and an emerging young woman in different relationships and contexts, as part of this is the assistance user’s ability to be similar to other girls and girlfriends, based on the categorization one chooses to compare with. Thus, it concerns an identity creation that is going on in a social context and where the personal assistant may contribute and help in different ways; such as in performing oneself in relation to certain expressions of young femininity; as an active and self-reliant girl, or ‘just a girl’ (Pearce, Paik, and Robles 2016). The young women want to have access both to family members as assistants as well as external assistants, when one is considered a better option than the other depends on the situation at hand. However, Sofia prefers her external female PAs who are in their twenties.

Assistants as friends is considered as an option to peer relations although the girls prefer to socialize with their disabled and ablebodied peers. The development of dyadic, intimate relationships which are caring to a certain limit, seems to be an important task and when the girls socialize with their ablebodied peers it is important for them to not taint the friendships by being perceived as a burden of care. This illustrates how different assumptions about normative youth, among them the need of ‘independent’ peer-friendships without interference of others (like parents or PAs) in order to be socially recognized as an ‘real teen’, but also the ambivalence of an ideal of a caring friendship is conditioned by certain limits of care and therefore assumptions of able bodiedness, informs the narrative of the interviewees.

As they have grown older, the interviewees have begun to reflect on the type of relationship they want to have with their personal assistants. As a young assistance user, it can be difficult to find the emotional balance when assistants replace other close relationships. At the same time, it can be difficult for the girls to renounce the friendship as they grow older, as they often lack close relationships with peers. When the young women have girlfriends, many of them prefer not to have their assistants as close friends, stressing friendliness or that PA’s can be ‘a bit like friends’.

They are a bit like friends, but not at all as much as before. We may as well talk, but it is not at all as much as it is before. It is more if you need to talk something through that you think of. Now we have a more professional relationship. I wanted to protect myself a little so that it does not become a ‘buddy relationship’ too much. When I got older I felt, why should I have them as my friends? It felt a bit like… No… (Sofia).

For Sofia, the relations with her personal assistants’ have changed character as she has gained more ‘real’ friends (rather than PA’s acting as ‘a bit like friends’) as she grows older through her involvement in the disability movement. When she is at meetings with her youth disability organization and socializing with her friends, she wants the assistants to stay in the background, but when she is at home, she does not mind having friendly interactions with her assistants. Specific places both require and enable different roll-taking and for Sofia it is necessary to negotiate her independency in the presence of the PA through strategies that regulates the level of the PAs interference.

Because I have become more involved in the board [of the disability organization] and I have my friends and so, they [the assistants] are not with them. It’s more professional, but at home and so we [the assistants and I] can talk and joke (Sofia).

When Helena is with her (‘real’/similarly aged) friends at school, it is important that her friends do not go in and replace her assistants in terms of providing practical help and support. For Helena’s part, it is okay to ask for help with things that a friend can be expected to help with, but not in terms of personal hygiene or other more intimate situations that friends are not assumed to help each other with. ‘Real’ friends may be caring; supportive and ‘look after’ each other, which include being attentive to friends’ needs and wishes, as well as commit emotionally and be intimate with a close friend to a certain limit (c.f. Bertilsdotter Rosqvist and Brownlow 2017). For example, Helena says:

The first year was quite strange [laughter]. For the school I attended did not have enough assistants. It was only me who had a personal assistant, and that assistant was sick quite often and when it happened they could not find a substitute. Then my parents had to step in and help me in the school, and that was strange. When they couldn’t do it, my friends helped me. Friends, it was friends! Friends can’t do much. They can fetch food and drink for me, but they cannot do it all. I am not helped in the same way as I am by having an assistant (Helena).

This quote illustrates how structural problems and shortcomings in the welfare system, here in form of a lack of assistance, become an individualized problem, a specific challenge for disabled youth. Simultaneously, it underlines the ambivalent relationship with friends, where the availability of ‘real support’ is conditioning ‘real friendships’, which may also depend on context. Helena is confronted with the task of managing relationships on the border between private and professional relationships. This is a recurrent topic in the interviews. Both parents and friends need to switch roles and become assistants to some extent. For Helena this is improper, not just because it feels strange and does not give her the required help, but also because it can influence her friendships in a negative way, for example when friends need to serve her food.

Negotiating emotional space in making-me processes

Like other teens girl’s path into adulthood it is formed by their interests and conditions, but unlike other teens, they are also supervisors for the PA, which also illustrates crip time as time travel but in this case going too fast forward in time. This implies that they also, to some extent, manage their own process of becoming an adult and become experts in handling and reflecting on different kind of relationships. Maya describes how she withholds her own negative feelings because she doesn’t want the PÁs to feel uncomfortable or take the risk that they would leave her.

It is like you do not want to … Some [assistants] that we have had, can almost be like they are about to quit then. /---/ So usually, I get an internal aggression that I do not show the outside world. I can feel a little, when I went to low and middle school, at the school I attended at that time had a theater and what you learned a bit at the theater, was to keep the mask, and so, I have had quite good use [of that technique] sometimes with my assistance. (Maya)

The quote with Maya illustrates a challenge to assumptions of youth behavior; rather than acting out, Maya self-consciously self-manage her behavior, so it fits into the relationship with the PA. Although most friendships entail some kinds of emotional regulation, being friends with their assistants is complicated by the fact that the girls need physical/practical support. The risk of being neglected, ignored or even refused help, put the girls in a much more vulnerable position than their ablebodied peers. Similarly, Hedvig says that it is not possible to get angry with the PA:

Interviewer: Do you feel that you can quarrel with your assistant?

H: No, I can’t. No, not when I feel angry at my assistant. For example, when she gets angry with me or my personal assistants gives me a warning, or when I’m out and about, then I don’t get angry or anything, no, oh, no, you can feel angry but not quarrel, you cannot.

Making me with others becomes complicated when the girls have to actively manage both other persons emotions and their own. Negotiating emotional space, such as in managing both onés own and other’s emotions, is something that distinguish the young women’s experiences from their ablebodied peers. In order to maintain a good working alliance with their assistants they have to manage the dual role of being a supervisor/friend which implies making the assistant comfortable with acting as a friend and employee. In line with maintaining a good and partly professional relationship, they have to control their own emotions and learn and practice ‘anger management’. Emotional management in the relation with the PA includes to navigate in relation to the PÀs temper, for example keeping a low profile if a PA is sad or low, or not showing aggression as illustrated in the quote. Even if the PÀs is supposed to be the girl’s extended me, both physically and mentally, they are conditioning the girl’s possibilities to act out her emotions in line with an expected teen behavior.

Negotiating privacy can be perceived as a sensitive issue. Having parents as PA’s and/ or wanting to maintain a professional friendship with external PA’s make the girls attentive to the assistants’ feelings. If possible, the girls try to arrange for a certain PA to work at a specific time and place, a strategy that allow them to avoid expressing their need for privacy, and risk having a conflict or hurting someone’s feelings. For Hedvig it is difficult to express her need for independence when her mother is present at school or when lack of external assistants makes her go to the museum with her parents. At other occasions, where there a clearly defined roles, such as when Sofia goes to meetings with other young disabled people, it is easier to express the need for privacy.

Transgressing ablebodied youth path into disabled adulthood

In their everyday life, the girls have to instruct the personal assistants, which include; providing them with information about the daily routines as well as how they want to be supported in different situations. Supervision can also include, scheduling working hours and recruiting personal assistants. Maya is knowledgeable about the assistants working conditions and explains their schedule.

We have a four-week schedule, usually they work maybe a couple of three consecutive nights, before someone else comes and then maybe they have free for four / five days before the next pass, then it is a little different week to week and from person to person (Maya).

To what extent the teenage girls act as supervisors vary depending on personal choice and perceived competence which is affected both by context and situation. If it has to do with their everyday routines, the girls often provide assistants with instructions but if it has to do with overall planning; to schedule work hours, or to recruit new assistants, many choose to receive support from parents or representatives from the assistance companies. Maya has mostly been involved in the entire process of recruiting and supervising assistants. For her there is a recurring need for recruiting and introducing new assistants into the existing work group. She finds the introduction of new assistants demanding since it requires adaptations both on behalf of herself and her mother who has the main responsibility for supervising and ‘fostering’ the new assistants. Hedvig, Sofia and Helena are not as involved in the overall planning as Maya is. Nevertheless, the girls think that it is important to participate at the interview with new potential assistants.

Discussion

Two broad themes emerged in the analysis, which illuminate the importance of social spaces and social relationships for the girls’ forming their sense of selves. In the first theme, Making room for me, identity formation is interpreted in relation to different times and spaces; stressing the importance of location of disabled girlhood (c.f Burman [1994] 2016). Important disability spaces identified are youth disability organizations and sport and youth recreation centers; spaces and places which are specifically for allegiance and support for disabled people, where disabled people are insiders (Morrison et al. 2020) and offered a place-based collective identity (Worth 2013). For Sofia the involvement in a disability organization for physically disabled youth and being a representative of this specific organization has provided her with a voice and a sense of pride and dignity which has strengthened her identity as a young physically disabled woman. For Sofia it is both a space of belonging and a community of resistance to ableist norms, relations and structures, providing her with an alternative to spaces dominated by ablebodied people. Being trusted with being appointed a board member in a youth disability organization also requires the ability to take responsibility and being responsible, which is often connected with being or becoming a female adult (Sjöberg and Bertilsdotter Rosqvist 2018), but also notions of young femininity and popularity (c.f. Bertilsdotter Rosqvist and Brownlow 2017). For Hedvig the sport center offers an accessible environment, in which the space and equipment is adapted for people with physical disabilities which enables her to use all exercise equipment and conduct training based on her conditions and needs, in a place where, Hedvig and her assistant fit in. While disability spaces can create feelings of belonging, they may also – simultaneously, reinforce normative identities beyond disability spaces. Another important space is school, a space which is shared with ablebodied youth. For the disabled girls school illustrates a counter narrative to some images of youth; consisting of generation conflicts, revolt and disinterest in school (Owens and Duncan 2009).

Spending more time with family is represented as normal in younger children (up to 12 years old) (Zeijl et al. 2000) but due to difficulties in recruiting external assistants, the disabled girls in our study are forced to time travel (Samuels 2017), back into living a more family-oriented lifestyle than they would have preferred if they had been able to choose freely. When the young women have girlfriends, many of them prefer not to have their assistants as close friends, while still stressing friendliness (c.f. Egard 2011) or having the assistant as a professional friend (Skär and Tam 2001; Hultman, Forinder, and Pergert 2015). Egard (2011) believes that the relationship between the user and personal assistant is not static, but involves constant negotiations on who should take initiative, distance and nearness. In this sense, the article shows that the relationship with external female PA’s demand an active ‘boundary work’ (Gieryn 1983) producing a distinction between a ‘professional’ relationship and a ‘real’ friendship.

Our second theme, Transgressing disabled youth paths, implies that living with personal assistance signifies having a responsibility that transgress expectations of ‘youth responsibility’, to time travel forward (c.f. Samuels 2017). In relation to the girls’ role as supervisors, they are expected to be able to manage their emotions in ways commonly associated with female adulthood rather than female youth. This includes the ability to both self-reflect and to claim a female adult position in certain ways ‘too fast’ (c.f. Sjöberg and Bertilsdotter Rosqvist 2018). It therefore can be seen, similar to the notion of limits of friendliness and friendships as illustrative of limits of ablebodied youth tasks, comparable with tensions regarding children performing tasks considered as adult in a too early adult way, such as children who works (O’Dell, Crafter, et al. 2017).

Invoking a developmental difference-perspective rather than a developmental pathological perspective (c.f. O’Dell, Brownlow, and Bertilsdotter Rosqvist 2017), have several implications for practice. It illustrate the importance of contextual pace not only in terms of the individual girl’s developmental pace, but also how this pace is conditioned by the pace of the PA; in terms of the ability of PA:s to both recognize and follow this pace. Similar to ablebodied youth, disabled youth’s transition into adulthood is characterized by yoyo-transitions, where youth enter and exit different adult positions several times (Biggart and Walther 2006), but in this case in line with Samuel’s discussion of different crip times as time travel and broken time, what adult or youth position the girls enter and exit is different. Recognizing alternative yoyo-transitions points towards the importance of awareness regarding what yoyo-transitions are being acknowledged as normal, and what are being othered (Engwall and Hultman 2020) and acknowledged as pathological, as failures, stress the importance of a broader perspective of both meanings of ‘youth’ and ‘development’, acknowledging different developmental trajectories (cf. O’Dell, Brownlow, and Bertilsdotter Rosqvist 2017).

The demands for financial restrictions have created incentives to limit the target group for personal assistance by redefining the meaning of the basic needs, which must be met, to be eligible for PA (Brennan et al. 2016; Dir.2016:40). This has resulted in personal assistance being governed by an increasingly medical definition of disability where the occurrence of obstacles is explained on basis of the individual’s injury or illness (Egard and Hedvall 2021) that has resulted in fewer people having access to PA. In light of this adverse development, it becomes necessary to safeguard the social and relational aspects of personal assistance and highlight how it enables young women to become adults.

Acknowledgment

We thank the young female assistance users who participated in the interviews and who generously gave of their time and shared their experiences.

Disclosure statement

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Norrbacka-Eugenia [PhD student grant], Allmäna Barnhuset [grant number 4-166].