Abstract

Understandings of disability and impairment among the general public influence how people without disability interact with those with disability. This paper explored how disability and impairment are understood by young people living in six rural communities in southeast Australia, including the perspectives of those with and without a disability. Of the 172 rural young people surveyed, 6% self-identified as having a disability, 7% were categorised as 'at risk' of mental ill-health and almost half reported some type of impairment or health condition. Using various measures, young people's responses reflected key discourses of disability, including dimensions of impairment, social judgement and limited function, and a blending of the medical and social models. These same young people separated the terms impairment and disability, embedding stigma in the latter. The study concluded that these rural communities need to reconstruct understandings of disability so as to support young people with disability and/or impairment.

Introduction

Compared to those without a disability, people with disability have lower rates of participation in employment, higher education and society generally (AIHW, 2008; ABS, 2011; ERC, 2008; McPhedran, 2012; OECD, 2003). For Australia's four million residents with disability or impairment (ABS, 2010a), lower rates of participation may be due to their impairment or limited function, but participation is also impacted by constructions of disability that stigmatise and lead to social exclusion (Edwards, 2005; Susman, 1994; Thomas, 2004). Thus, the ways disability is understood are important because they direct people in how to relate to people with disabilities.

There are many definitions, models and understandings of disability which have been discussed at length by academics, policy-makers and advocates. Different definitions impact who is categorised and who identifies as having a disability, who receives support, and the source of change required to improve the lives of those living with a disability (Edwards, 2005; Munyi, 2012; Thomas, 2004). Consequently, there has been significant debate over meanings and definitions (Barnes, Oliver & Barton, 2002; Edwards, 2005; Putnam, 2005; Thomas, 2004). Research has tended to focus on how people with disability understand and experience their disability/ies (Brown, Hammer, Foley & Woodring, 2009). However, the perspectives of those without disability are also important as they impact on the experiences and social participation of those with disability. This paper explores how disability and impairment are understood by young people living in six rural communities in southeast Australia, including the perspectives of those with and without disability. These young people's understandings of disability and impairment shape how they relate to local residents who identify as having a disability and/or impairment (Brown et al., 2009). Before presenting the perspectives of these young people, how disability is understood and experienced more generally is reviewed.

How are disability and impairment understood and experienced?

Key models providing understanding of disability and impairment

The most deep rooted and pervasive understanding of disability tends to revolve around medicalised understandings of limited function and perceptions of normality consistent with the rise in scientific inquiry during the 20th century (Gronvik, 2007). From this perspective, a disability involves limited activity, not being able "to do things', or having a "medically certifiable condition" preventing fulfilment of normative social roles (Thomas, 2007, p. 12). Further, physical impairments are legitimised by their identification from the medical field. From a medical perspective, impairment is viewed as the singular cause of disability and the ultimate goal is cure through removal of the offending impairment (Edwards, 2005; Thomas, 2007). Impairment is then separated from disability with focus on the former. Thus, the medical model understands disability in terms of individual deviations from social and cultural norms (Edwards, 2005; Oliver 1996; Thomas, 2007).

During the 1960s and 1970s the disability movement became political and people with disabilities challenged traditional biomedical understandings. Known as the social model, this approach placed the social construction of disability at its core: "Disability (is) the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities" (UPIAS 1976 cited in Oliver 1996, p. 22). Where the medical model understood disability as physical impairments emanating from the individual, the social model separated impairment and disability, locating the latter as problems stemming from society. In the social model, disability was understood as social injustices reproduced in all levels of society, structurally embedded in economic, political and cultural institutions (Barnes, Oliver & Barton, 2002; Thomas, 2004). Discourses of disability separated, labelled and discriminated against people with disabilities, ultimately restricting access to the rights and resources of the mainstream (Brittain, 2004; Edwards, 2005; Thomas, 2007).

Hedlund (2000) argued that the development of a disability discourse constructed the medical and social approaches in opposition to each other. Some have critiqued the medical model for its emphasis on individuals and impairment while excluding mitigating social and cultural factors. Others challenged the medicalised assumption that disability was a fixed, dichotomous, non-normative category (Thomas, 2002). Conversely, the social model has been criticised for its determined omission of bodies, impairment and personal experience (Thomas, 2002; Miceli, 2010; Tregaskis, 2002). Many argued that the social model did little to address the actual needs of people with disabilities: "to ignore impairments is to ignore 'reality' of the lived experience of people with a disability" (Mulvany, 2000, p. 588). More recently, both are understood as contributing to understandings of disability and allowing for a more accurate rendering of the needs and experiences of people (Lester & Tritter, 2005; Thomas, 2007). Disability theorists now "seek to combine a focus on structure, agency and meaning" (Mulvaney, 2000, p. 591).

Others have attempted to provide usable definitions incorporating social and contextual factors along with impairment. Notably, the World Health Organisation's International Classification of Impairments, Disability and Handicaps (ICIDH) model conceptualises disability as the "restriction or lack of ability to perform an activity in a normal manner" (Thomas, 2004, p. 575; see also Iezzoni & Freedman, 2008; Llewellyn & Hogan, 2000). While it avoids equating disability with impairment and attempts to incorporate contextual factors, it still conceptualises disability in terms of disadvantage in the fulfilment of a 'normal role' (WHO, 2001). Subsequent versions of the ICIDH model have attempted to address these criticisms, however critics note that the focus on limited function remains (Edwards 2005). An increasingly post-modern focus in disability studies called for an acknowledgement of the fragmented experiences and identities of people with disabilities. The need to adequately capture the diversity of people with disabilities, taking into account not only varying impairments but diverse identities, ethnicities, genders, ages and geographic locations, has been established (Vernon & Swain, 2002).

While these models have been discussed at length, there is little research on public or 'lay' understandings of disability (Brown et al., 2009; Putnam, 2005). Brittain (2004) did research perceptions of disability in society and found that perceptions were often based on the medical model and ranked in terms of 'severity'. He found that perceptions tended to be negative and not only shaped how people with disabilities were viewed by others, but also how people with disabilities viewed themselves, their identities and their disability (Brittain, 2004). Most research has focused on the experiences of those with disabilities (see Green, Davis, Karshmer, Marsh & Straight, 2005; Wedgewood, 2011).

Experiences of Disability and Impairment

Expectations of the perfect body and negative reactions to disabled bodies impact on the self image of a person with disability (Brittain, 2004). People with disabilities are treated differently by their peers and others around them. Their disabilities contribute to shaping relationships and some who have acquired disabilities later in life have noted significant changes in their relationships (Brittain, 2004). People "act toward or interact differently with people with disabilities, even when the individual with a disability is still the same person they have known for many years" (Brittain, 2004, p. 436). People with disabilities have commented how family and friends overcompensate, create dependency, or avoid them because they are unable to understand disability (Brittain, 2004).

Similarly, the experience of impairment can lead to "a fundamental rethinking of a person's biography and self-concept" because it alters perceptions of the body, of long-term health and quality of life, of death and of futures (Lawton, 2003, p. 25). While self images are eroded with the acquisition of impairment, some argue they are not replaced with alternative images of value (Lawton, 2003). Some distinguish between the severity, functionality and/or acceptability of impairments, indicating these impact how people are included and treated (see Barg, Armstrong, Hetz & Latimer, 2010; Wedgewood, 2011). But health and illness are experienced differently across age, social class, cultural groups and families, and are related to individual, contextual and other issues (Lawton, 2003). Thus, people with disabilities and/or impairments are not one homogenous group and negative attitudes endure between those with disabilities and/or impairments (Brittain, 2004).

Using Goffman, many have argued that the functional limitations of a disability are magnified by social perceptions and responses (Frost, 2011; Green et al., 2005; Susman, 1994; Watson & Larson, 2006). The degree of stigma alters with the type of disability or impairment, the level of functionality, choices regarding self-disclosure and the negotiation of identity in public (Green et al., 2005; Olney & Brockelman, 2003; Watson & Larson, 2006). Stigma restricts social networks and opportunities which in turn increase social isolation. Self-esteem, mental health, and social and employment participation are also decreased (Frost, 2011; Lawton, 2003; Watson & Larson, 2006).

One area neglected by disability writers is mental illness (Mulvany, 2000). Indeed, there is confusion as to whether "madness" and mental illness should be included in discussions of disability (Beresford, 2000). Traditionally, disability studies focused on the experience and effects of visible, physical or sensory impairments (Edwards, 2005; Mulvany, 2000). While many make early reference in their work to "impairments of the mind and body", impairments of the mind tend to be neglected. Despite this, restrictions faced by those with a mental illness, for example stigma, can be conceptualised in terms of disability. Socially produced barriers and institutions limiting activity resulting from impairment can also limit those who are mentally ill (Beresford, 2000; Frost, 2011; Mulvany, 2000; Lester & Tritter 2005).

Disability in the Rural Context

Remoteness and rurality magnify and contribute to the disadvantage experienced by people with a disability (Gething, 1997). McPhedran (2012) found that people with disability in regional areas, compared with those residing in major cities, were less likely to have completed Year 12 (secondary school) or be in tertiary education. They were also more likely to be unemployed, not participate in the labour force and to receive income support (McPhedran, 2012). More positively, regional residents with disability were more frequently involved in the local community and experienced support from neighbours while metropolitan residents had more contact with family and friends (McPhedran, 2012). Thus, regional residents with disability experienced greater socioeconomic disadvantage but more community involvement than their metropolitan counterparts (McPhedran, 2012).

Key issues facing rural people with disabilities include geographic, social and cultural isolation. Negative community attitudes, lack of awareness of rights among people with disabilities, less education, employment and vocational opportunities, and issues related to distance, transport and mobility also affect rural people with disability. They also face challenges accessing services, placing the burden of caring on families, particularly women (du Plessis and Bailey 2002; Gething 1997; Kuipers, Kendall & Hancock, 2001; McDonald and Zetlin 2004). In a study of rural parents with a child who has a disability, Foy (1997) found that access to and availability of social and emotional support networks and services were critical for parents. Other issues included confidentiality, travel, family disruption, time as well as the physical, emotional and financial strains involved (Foy, 1997). Aboriginal Australians, who have very high rates of disability, impairment and chronic disease, have identified the lack of culturally secure and appropriate health services as key barriers to accessing services (Kendall & Marshall, 2004). Research has found that isolation associated with living in rural and remote areas compounds feelings of loneliness and marginalisation among those with disability. Confidentiality and privacy issues coupled with the lack of choice of service providers also means people who feel inadequately served are less likely to make formal complaints for fear of retribution or exclusion (Gething 1997). "A multitude of factors lying outside an individual can turn disability into disadvantage… geographical, historical, social, psychological, attitudinal and physical factors all impinge… [on] people with disabilities living in remote and rural areas" (Gething, 2007: 527-8). At the same time, strong social support and assistance have been observed (Kuipers et al., 2001).

While rates of young people with a disability are not higher in rural areas (ABS, 2010a), young, rural residents with a disability face a range of additional challenges. In rural communities with fewer people and services, young people have smaller local social networks and live in a 'goldfish bowl', compounding issues of confidentiality and privacy (Bourke, 2003; Glendinning, Nuttall, Hendry, Kloep & Wood, 2003). Local community norms in rural areas can be strong, varying in their support of people with disabilities. Furthermore, the type of disability can impact on isolation and educational development for rural, young people with disabilities, creating further obstacles and disadvantage in accessing education resources and services (du Plessis & Bailey, 2002).

Young people and disability in Australia

Earlier reports found that 9% of 15-24 year old Australians identified as having a disability (9%) and a further 14% (23% in total) reported having an impairment or long-term condition (ABS, 2003). More recently, 6.6% of 15-24 year old Australians indicated having a disability (ABS, 2010a). Younger Australians were more likely to indicate mental disorders than their older counterparts, but reported low use of mental health services (ABS 2010b). Despite significant proportions of young people experiencing disability, their perspectives, particularly rural young people's perspectives, of disability are rarely considered (see Brown et al., 2009). Additionally, there are few studies which target mainstream populations rather than those already categorised 'disabled', often by an external, governmental party. For this reason, this study focused on young people sourced from mainstream secondary schools in six rural communities in Victoria and was not tied to any one definition of disability.

Methods

Consistent with this study's reluctance to impose any one definition of disability, five measures were included to examine the topic of disability and impairment. To begin, a questionnaire was designed and ethics clearances from the university and the state Department of Education were gained. Nine government secondary schools were asked to participate in the research, of which six agreed to assist in recruiting young people. A letter explaining the study along with consent forms were distributed to parents of students in Years 9-12 in each school (aged 14-18). In three schools these were mailed directly to the parents while in other schools these forms were distributed to students to take home to parents. Once consent was gained, students were given a questionnaire and asked to complete it confidentially and on their own. Four schools were surveyed in November 2009 and two schools were surveyed in February-March, 2010.

To increase response, young people in secondary school were also asked to participate through local clubs and groups in the same towns. Students in Years 9-12 were asked to participate but parental consent was only required if the student was under 16 years of age. Participants did not receive incentives, but the clubs were reimbursed for their time in assisting with recruitment. As many forms were handed out by schools and clubs, it is unclear exactly how many students were given forms. It is believed that approximately 900 students were asked to participate of which 172 students completed the questionnaire. An estimate of response is 20%, although this varied in the different communities (see Table 1 for more details). Therefore, the samples cannot be considered representative and, consistent with the trend of survey research, it is expected that students from higher socioeconomic backgrounds were more likely to respond. The questionnaire data were coded, entered into a statistical database and analysed with the assistance of SPSS.

Table 1: Response Rates in each Study Site

 
Town A
Town B
Town C
Town D
Town E
Town F
Overall
Estimated response rate %
42
10
12
25
50
20
20

number of participants

32
26
45
18
22
29
172

The questionnaire included four indicators of disability as well as a range of demographic characteristics. First, students were asked if they had a disability (yes/no). Second, they were asked if they had a chronic health condition from a comprehensive and general list of chronic conditions/impairments, each with yes/no responses. Third, as an indicator of mental health, the Strengths and Difficulties (S&D) Scale was used. This is a 25 item scale designed for young people that has been validated in adolescent mental health (Hawes & Dadds, 2004). It is a brief behavioural screening questionnaire to determine risk of mental health disorders (see Youthinmind, 2007). Fourth, to gain insight into young people's understandings of disability, the questionnaire asked all students two open-ended questions: 'what does the term disability mean to you?' and 'what types of things are part of having a disability?' All answers to these questions were coded.

Demographic questions were also included, specifically sex (male or female), age (in years), year in school (9 to 12), how long they had lived in the region (in years), if they worked for pay or not, and if they participated in a local club, group or organisation or not. Attitudinal statements about themselves, their home life, peer support, privacy and confidentiality, and ability to achieve goals were measured using a five-point likert scale ranging from strongly disagree to strongly agree. These indicators were compared to the disability measures using t-tests if dichotomous or otherwise Pearson's r, but are only reported when a statistically significant difference was found where p<0.5.

In addition, students who had indicated having an impairment were asked on the questionnaire if they would be willing to take part in an interview and to provide a contact detail of their choosing. These students were then contacted and asked to confirm their willingness to participate. Once parental consent was assured, an interview was organised. Interviews were conducted both in and outside of the schools and lasted between 30 and 60 minutes. All seven participants were from three towns. In the interviews, experiences of disability were discussed along with respondents' perspectives on barriers and supports available to young people with a disability or impairment. Interviews were recorded, transcribed and coded. These descriptions by seven young people is the fifth measure.

Findings

The six communities were located in the south eastern Australian state of Victoria. All were rural towns, but varied in size, local economy and proximity to larger places. Towns A and E were small farming towns, dependent on cropping and recently impacted by seven years of drought. Town E was smaller and more isolated than Town A. Town B was a farming town with a tourist base. Town C was located very near a regional centre with a culturally and linguistically diverse population and a tendency for lower socioeconomic levels. Town D was a small agricultural and retirement community within commuting distance of a regional centre with larger secondary schools. Town F was small and isolated with a diverse economy based on primary industries, tourism and houses a large P12 school that services the wider district (see Table 2).

Table 2: Demographic characteristics of the study sites

 
Town A
Town B
Town C
Town Da
Town E
Town F

Population of townb

750
2,800
7,200
1,400
500
1,050

Distance from Melb (kms)

250
210
200
230
400
190

Distance from regional centre (km)

100
60
8
40
100
50

Number 14-18 year olds in local townb

55
179
NA
76
22
62

Major industry of employmentb

Agriculture, hospitals
Education, agriculture
Fruit/veg, education
Hospitals, education
Agriculture, hospital,
Agriculture, hospital

% unemployedb

3
4
8
3
7
6

Median HH income/weekb

$663
$743
$784
$617
$571
$629

ICSEAc (approx.)

1050
1050
950
1030
1040
980

Approx. number of enrolments in Years 7-12c

135
460
725
125
70
NA

a  It is important to note that recruitment in Town D lead to more students being recruited through local clubs, particularly sports clubs, than the school. This sample is mostly male students.

b  Information from the Australian census (ABS, 2007); town refers to urban centre/locality while region refers to state suburb, the latter more accurately reflects school catchment.

c  Information from government enrolment records (ACARA, 2010); ICSEA is the Index of Community Socio-Educational Advantage which incorporates data on remoteness, social and economic background of students, and proportion of indigenous students enrolled in school.

Of the 172 students, just over half, 53%, were male (see Table 3). Notably there were very few female participants in Town D. Around eight in 10 respondents were aged 15-17. In terms of year in school, 31% were in Year 9, 28% in Year 10, 26% in Year 11 and 15% in Year 12. Three-quarters of respondents had lived in the same region for the past 10 years and only 10% had lived in the region for less than five years. More than half worked for pay and this was higher in Towns A and B and lower in Town D. Those working for pay were more likely to be the older students. Most (80%) also participated in local groups, clubs and organisations, almost half in more than one group. Students' perceptions of disability and impairment were captured when recruiting the students as well as through five different types of data, each presented below.

Table 3: Characteristics of the samples

 
Town A
Town B
Town C
Town D
Town E
Town F
Total
number of participants
32
26
45
18
22
29
172
% female
56
39
56
  6
45
59
47
median age
15
16
16
17
17
16
16
% work for $
72
73
61
67
41
48
61
% participate in community activity
94
73
84
89
86
68
80

The Stigma of Disability in Recruitment

Researchers from this study believe that the stigma surrounding disability impacted participation and response. For example, while the goal was to give the questionnaire to all students in Years 9-12 in six schools, two separate ethics committees strongly questioned the capability of young people with a disability to complete the questionnaire. In other studies of young people that have included those with and without a disability, this has not been questioned. Another example arose in the next phase of the research. When asking schools for participation, most of the discussions focused on definitions of disability, the numbers of, and issues facing students receiving government disability support, and how students and parents would respond to a questionnaire with 'disability' in the title—did the questionnaire imply that a student has a disability because they were being asked to participate? Once the questionnaires were distributed, a few parents contacted a researcher demanding to know 'how did you know my son/daughter had a disability?' or informing the researcher that their son/daughter did not have a disability and therefore had no reason to participate. Finally, researchers perceived that students were not comfortable disclosing if they had a disability and that the word 'disability' in the title of the questionnaire discouraged participation. In short, we believe that the overall response rate and disclosure of having a disability were lessened because of the stigma associated with the term disability. The response rate was also lessened by requiring parental consent, making it more difficult to engage students in the research, to empower young people to make their own decisions, and to give these rural, secondary students their own voice (see Geldens, 2004).

Self reporting of disability

Students were asked directly if they had a disability. Nine (6%) of the 172 students self-identified as having a disability (see Table 4), describing depression/anxiety/mood disorders, learning disabilities, asthma, ADD, autism and physical disabilities. The students disclosing a disability were more likely to have seen a counsellor and were more concerned about privacy. Otherwise, they were similar in their responses to the students indicating they did not have a disability.

Table 4: Indicators of students with a disability, in percent


Indicator
Town A
Town B
Town C
Town D
Town E
Town F
TOTAL
% self report
  7
  4
  7
  0
  5
  7
  6
% 1 impairment
59
58
47
22
59
48
47
% 2 or more impairments
13
15
22
  0
23
17
16
Mental Health scale
Mean (average)

% normal
% borderline
% abnormal

8.5

100
  0
  0

10.0

100
  0
  0

10.9

75
18
  7

10.8

88
12
  0

12.7

68
14
18

12.7

65
21
14

10.8

82
11
  7

Of these nine students who identified as having a disability, three said that their friends were aware of their disability and six stated that their friends did not know. Of the three whose friends were aware, two said that their friends were supportive and one said his/her friends were not supportive. Five of the nine stated that teachers were aware of their disability and all five said the teachers were supportive. Four of the nine stated that they received support for their disability, including support with school work, career planning, transport and flexible time from the school.

Impairments

Students were asked to indicate if they had an impairment according to broad categories provided. Nearly half (47%), 83 of the 172 students, reported having one of these conditions and 28 students (16%) had more than one (see Table 4). Students were not asked to specify if their impairment was chronic or episodic. In total, the number of students with each condition was:

  • 32 experienced chest, breathing problems, asthma or bronchitis
  • 26 had skin conditions or allergies
  • 25 had difficulty seeing
  • 16 listed a mental illness, depression or anxiety, mood or personality disorder
  • 6 had problems or disability connected with arms, legs, hands or feet
  • 4 reported dyslexia or other learning problem
  • 3 had difficulty hearing
  • 3 had chronic fatigue, post-viral syndromes or glandular fever
  • 3 had stomach, liver, kidney or digestive problems
  • 2 had heart, blood pressure or blood circulation problems

All who identified as having a disability also identified as having one or more of these conditions. Students with one of these conditions were more likely to indicate that things at home were difficult and their general health was poorer, and were less likely to state they feel close to their families. Students with two or more conditions reported lower levels of happiness and were more likely to agree that 'people did not listen' to them and 'things at home were difficult'.

Mental Health

Experiences of mental illness forms a component of disability (Mulvaney, 2000). Interestingly, 32% of these students indicated they had visited a counsellor, therapist or psychologist in the three months preceding the questionnaire. Overall, 82% of students were categorised as not of a concern, according to the Strengths & Difficulties Screening tool, while 11% were categorised as "borderline" and a further seven percent were categorised as "abnormal". This suggests that 18% were vulnerable to mental ill-health (see Table 4). However, the results of this measure varied across the six study sites. All students in Towns A and B rated normal. In Town D, no student identified as being 'abnormal'. Town F and Town E had more students who were 'borderline' and at risk, indicating more vulnerability to psychological issues. Similarly, mean scores were higher in Towns E and F than the other towns, indicating students were more likely to be vulnerable to mental ill-health in those towns. Town A was the only town to have a mean score lower than the national average for this age-group (9.6) (Youthinmind, 2007).

Those classified as at risk of mental illness were more often female and were more likely to identify lower levels of health and happiness. In addition, those at risk of mental illness were more likely to have indicated that "keeping my life private" and maintaining "privacy and confidentiality" were more problematic than those classified as "normal". Further, they were less confident that they could achieve their goals, less likely to have spoken to a careers teacher, and identified "finding accommodation elsewhere" and "doing things alone" as more likely to be barriers to achieving their goals. This same group were more likely to feel that people "did not listen" to them and that they did not "fit in". They were also more likely to agree that "things at home were difficult" and disagree that "others like me" or they are "close to their families". While the measure was only vulnerability to mental illness, findings suggest that those at risk of mental ill-health face a range of psychosocial barriers restricting social, educational and career opportunities.

Understandings of disability

In order to understand perceptions and attitudes toward disability, all students were asked 'what does the term disability mean to you?' The most common responses were: "can't do particular things" (56 respondents) and physical and/or mental limitations (39 respondents), reflecting limited function. The next most frequent responses focused on social judgements, specifically "not normal" (17), "can't function like normal people" (14), and "disadvantaged" (10). Fewer made comments about being unwell or sick (8), "being dependent on others" (7), having unavoidable problems (7), being "handicapped" or "retarded" (4) and being "different" (3). When asked what type of things were part of having a disability, responses were similar. Respondents referred specifically to physical or mental limitations (79), to a specific type of disability (23), "can't do particular things" (25), being dependent on others (13), it involves frustration, judgement and emotional hardship (9), needing a wheelchair or physical apparatus (6), and a few wrote being "not normal" (3), sick (3) or "different" (2). Consistent with dominant conceptualisations of disability, many respondents equated disability with impairments and limiting function. Several responses also included negative social judgements about being dependent, "handicapped" or "retarded", being "different", "abnormal" or sick.

Talking about disability and impairment

Students with impairments were asked for a face-to-face interview. Only seven agreed and participated in an interview, including six females. One interviewee was in Year 9, two in Year 10 and four were in Year 11. Each reported an impairment, including hearing difficulties, asthma, mental illness, attention deficit disorder, stomach/liver disease, difficulties seeing and skin conditions, although two indicated that their impairment had not been formally diagnosed by a health professional. Only one of the seven, Peter (pseudonym), identified as having a disability. However, Peter was hesitant to identify as having a disability and his perspective of disability appeared confused. During the interview, he described his disability in medicalised terms, emphasising impairment and distancing himself from a disability label. Interestingly, he indicated that while his teachers were aware of his disability, his friends were not. Other interviewees also distanced themselves from the term disability. For example, Felicity stated "it's not really a disability or anything" while Sarah indicated that she was "normal… like everybody else, everybody is affected by something". The concept of 'disability' did not seem included in Sarah's understanding of her conditions or her sense of self.

All seven stated that their impairments had not impacted their current or future choices in any way. Sarah suggested that: "I don't see how my health could possibly prevent me from achieving any of my goals". Anita indicated that she had a depressive mental illness and was unsupported by her family, but when talking about her future stated "I don't think it will really affect me" Peter, who suffered from a chronic health condition which required immediate hospitalisation for acute episodes and regular checks with specialist health professionals in Melbourne, also indicated that the impact on his life was insignificant. He noted that not being able to play sports was a limitation but reiterated that his disability did not influence the decisions he made about his future. Overall, all seven were positive, did not view their impairments as limiting, and implied that disability was associated with some kind of stigma.

Discussion

During the planning stages of this study, researchers were anxious to avoid imposing a rigid definition of disability. We were concerned with capturing wide-ranging understanding and experiences of disability, not confined to externally imposed classifications. However, we faced an implied understanding that a study of disability must necessarily target 'disabled' populations, which necessarily entails some sort of definition and measure of exclusion. One reason behind the preoccupation with encompassing definitions is adequate provision of services. Without guidelines on exactly what constitutes 'disability' and 'impairment', government and other services have no consistent basis on which to provide services. However, criticism of the use of statistics is sharp, revolving around categorisation and the emphasis on impairment to the exclusion of social elements (Oliver, 1991; Zola, 1993). As found here, rates of disability differ according to each definition and methodology used (Zola, 1993).

This research found, as in previous studies, that disability is a concept that is difficult to define and measure (Llewellyn & Hogan, 2000; Shakespeare, 2007) and different measures yielded very different rates of disability and impairment. Of the 172 secondary students, 6% self-identified as having disability, 47% reported at least one health condition or impairment, and 7% were categorised as 'at risk' according to the mental health screening tool. National rates indicated a similar proportion (6.6%) of 15-24 year old Australians reported a disability (ABS, 2010a). Earlier data found that 14% had an impairment/long term condition (ABS, 2003), suggesting the rate of impairment found here was high.

When asked about impairments and screened for mental ill-health, it was clear that a significant proportion of these young people experience health conditions and impairments, both physically and mentally. These same young people clearly separated the terms impairment and disability. Reporting a health condition or impairment is more common and acceptable to these young people than having a disability. As Green at al. (2005, p. 203) stated, "people tend to feel that a person with impairment is 'still one of us' as long as the impairment is perceived to be minor and/or temporary. This distinction can be especially troubling for individuals whose progressive conditions result in movement from one category of disability to another". Our respondents implied that the type of impairment is important along with its impact on functionality (see also Barg et al., 2010; Green et al., 2005). Similarly, interviewees described their impairments as minor and not limiting function, and distanced themselves from a disability label. Together, these findings imply that, unlike impairment, disability "places people in a social category that does have social significance to others" (Green et al., 2005,p. 202).

Within young people's responses was an understanding that disability is a complex term which describes people who have differing impairments and embodiments, differing levels of social in/exclusion and differing experiences (see Mulvaney, 2000; Shakespeare, 2005; Thomas, 2007). Limited function and impairment were frequent dimensions along with being different and "not normal". Young people understood the notion of severity, impact and long-term as related to a disability identity (see Barg et al., 2010; Green et al., 2005). But young people also indicated that disability was difficult to define and categories were not clear. Most listed more than one response when asked about understanding disability and the interviewees struggled to clearly and consistently distinguish impairment and disability. Embedded in young people's understandings of disability and impairment was a blending of medical and social models. Responses referenced integrating function, acknowledged the need for specific support or adjustment, assigned a judgement or label (in reference to the 'norm') and recognised diversity (Mulvaney, 2000; Shakespeare, 2005; Thomas, 2007; Wedgwood, 2011). Young people have learned key discourses about disability and while their language was not fluid, their understandings reflected a component of impairment, a component of social judgement and a component about limited function, which are key aspects in discussions of disability (see Hedlund, 2000). This suggests that discussion of disability in policy, service delivery, academia and education have filtered through to young people's understandings (Taylor, 2000; Zola, 1993).

Further, these findings inferred that stigma was associated with disability. The focus on function and normality in participants' understandings of disability and interviewees rejection of a disability label reflected a negative dimension embedded in the term (see also Brown et al., 2009). Stigma was not only embedded in young people's definitions of the term, but among parents', teachers' and students' responses during data collection as well as implied by the reluctance of those with a disability to identify to peers (see Thomas, 2004). This suggests that young people with a disability in these communities experience stigma, which Green et al. (2005) report to manifest as altered and awkward interactions, in discrimination and social exclusion, and, less frequently but more detrimentally, in violent or overt acts of separation. Stigma has "increased social isolation, decreased employment opportunities, reduced incomes…[and resulted] in self-esteem and self-efficacy decrements" (Watson & Larson, 2006, p. 235). The stigmas, negative labels, social exclusion and poor treatment of people with a disability have also lead to poorer mental health (Frost, 2011; McPhedran, 2012). Social support for people with disabilities and networks with others who have disabilities can assist in coping and addressing stigma (Watson & Larson, 2006) but such networks are more difficult to form for rural people with disabilities (Foy, 1997).

The study was limited by its poor response rate. Further, measures of impairment did not identify the severity of condition or length of time with the condition. That 47% of students reported a health condition or impairment may be due to a sampling bias, the disability-related purposes of the research, or the inclusion of short-term health conditions in this measure. It may also reflect the sensitivity of rural residents in maintaining privacy and confidentiality for fear of stigma across their entire community (see Bourke, Sheridan, Russell, Jones, DeWitt & Liaw 2004). Furthermore, the use of questionnaires for most measures did not capture the experience, context or complexity of disability (Zola, 1993). "Understanding of the collective biography of young people with impairments requires cultural as well as structural explanations, along with acknowledgement of the significance of the body as a cultural marker of youth" (Wedgewood, 2011, p. 437; see also Priestly, 2003).

Brown et al. (2009) argued that disability identities are made and re-made as the individual interacts with their social environment (see Taylor, 2000). The young participants of this study are constructing and re-constructing their identities and meanings through ongoing interactions with their environments. That young people with disabilities are reluctant to identify to peers coupled to the stigma embedded in understandings of disability suggests that these rural social environments are not supportive of a disability identity. Not only do these rural communities need to increase access to services and support (Gething, 1997), but they also need to reconstruct understandings of disability so as to support young people with disability and/or impairment.

Funded by the Australian Government Department of Education, Employment and Workplace Relations under the National Disability Coordination Officer Program. The researchers would like to thank all the participants in this study who gave their time and responded to our questions thoughtfully and honestly. We also thank the six schools who kindly gave their permission for us to conduct the research and assisted us in distributing information statements and consent forms and also recruiting participants. And we thank the many community clubs who also assisted in recruitment. The authors would further like to thank the Goulburn Valley NDCO for contribution to the project, specifically Mathew Brett and Cressida Metcalf, and also Anne McKenzie for assistance with data entry.

References

  • Australian Bureau of Statistics (ABS). (2003). Disability, Ageing and Carers, Australia: Summary of Findings, 2003: 4430.0.55.001. Retrieved from http://www.abs.gov.au/AUSSTATS/abs@.nsf/allprimarymainfeatures/3319EC785921CFFCCA2577FA0011C3C8?opendocument.
  • Australian Bureau of Statistics (ABS). (2007). Census of the Australian population 2006, Basic Community Profiles. Canberra: Australian Bureau of Statistics.
  • Australian Bureau of Statistics (ABS). (2010a). Disability, aging and carers, Australia: Summary of findings 2009, 4430.0. Retrieved from http://www.abs.gov.au/ausstats/abs@.nsf/mf/4430.0
  • Australian Bureau of Statistics (ABS). (2010b). Mental health of young people, 2007 4840.0.55. Retrieved from http://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/4840.0.55.001Main%20Features22007?opendocument&tabname=Summary&prodno=4840.0.55.001&issue=2007&num=&view
  • Australian Bureau of Statistics (ABS). (2011). Disability, Vocation and Education Training, 2009.  Retrieved from http://www.abs.gov.au/ausstats/abs@.nsf/Products/4438.0~2009~Main+Features~People+aged+15%E2%80%9324+years?OpenDocument
  • Australian Institute of Health and Welfare (AIHW). (2008). Disability in Australia: Trends in Prevalence, Education, Employment and Community Living (Bulletin 61). Canberra: Australian Institute of Health and Welfare.
  • Barg, C.J., Armstrong, B.D., Hetz, S.P. & Latimer, A.E. (2010). Physical disability, stigma, and physical activity in children. International Journal of Disability, Development and Education, 57(4), 371-382.
  • Barnes, C., M. Oliver, & L. Barton, (Eds.). (2002). Disability Studies Today. Cambridge: Polity Press.
  • Beresford, P. (2000). What have madness and psychiatric system survivors got to do with disability and disability studies? Disability & Society 15(1), 137-172.
  • Bourke, L. 2003. Toward understanding youth suicide in an Australian rural community, Social Science & Medicine 57(12): 2355-2365
  • Bourke, L., C. Sheridan, U. Russell, G. Jones, D. DeWitt, & S. T Liaw. (2004). Developing a conceptual understanding of rural health practice. Australian Journal of Rural Health 12, 181-186.
  • Brittain, I. (2004). Perceptions of disability and their impact upon involvement in sport for people with disabilities at all levels. Journal of Sport & Social Issues 28(4), 429-452.
  • Brown, K., D.Hammer, S. Foley, & J. Woodring. (2009). Doing disability: Disability formations in the search for work. Sociological Inquiry 79(1), 3-24.
  • du Plessis, D. & J. Bailey J. (2002). Isolated parents' perception of the education of their children with disabilities. Education in Rural Australia 10(2), 2-26.
  • Edwards, S.D. 2005. Disability: Definitions, value and identity. Oxford: Radcliffe.
  • Equity Research Centre (ERC). (2008). Leading from the front? Research on disability employment in the Victorian disability sector (Summary). Report to Australians for Disability and Diversity Employment (ADDE) and Action for Community Living (ACL), Equity Research Centre.
  • Foy, E. (1997). Parental grieving of childhood disability: A rural perspective. Australian Social Work 50(1), 39-44.
  • Frost, D.M. (2011). Social stigma and its consequences for the socially stigmatized. Social and Personality Compass 5(11), 824-839.
  • Geldens, P.M. (2004). 'I just can't see myself doing it': Occupational aspirations and identities: Young people from family farms, Victoria (Unpublished Ph.d. thesis). School of Resource Management/School of Rural Health, University of Melbourne, Australia.
  • Gething, L. (1997). Sources of double disadvantage for people with disabilities living in remote and rural areas of New South Wales, Australia. Disability & Society 12(4), 513-531.
  • Glendinning, A., Nuttall, M., Hendry, L., Kloep, M. & Wood, S. (2003). Rural communities and well-being: A good place to grow up? The Sociological Review 51(1), 129-156.
  • Green, S., Davis, C., Karshmer, E., Marsh, P. & Straight, B. (2005). Living stigma: The impact of labelling, stereotyping, separation, status loss, and discrimination in the lives of individuals with disabilities and their families. Sociological Inquiry 75(2), 197-215.
  • Gronvik, L. (2007). The fuzzy buzz word: Conceptualisations of disability in disability research classics. Sociology of Health & Illness 29(5), 750-766.
  • Hawes, D.J., & M.R. Dadds. (2004). Australian data and psychometric properties of the Strengths and Difficulties Questionnaire. Australian & New Zealand Journal of Psychiatry 38(8), 644-651.
  • Hedlund, M. (2000). Disability as a phenomenon: A discourse of social and biological understanding. Disability & Society 15(5), 765-780.
  • Iezzoni, L.I., & V.A. Freedman. (2008). Turning the disability tide - The importance of definitions. JAMA-Journal of the American Medical Association 299(3), 332-334.
  • Kendall, E. & Marshall, C.A. (2004). Factors that prevent equitable access to rehabilitation for Aboriginal Australians with disabilities: The need for culturally safe rehabilitation. Rehabilitation Psychology 49(1), 5-13.
  • Kuipers, P, Kendall, E. & Hancock, T. (2001). Developing a rural community-based disability service: (I) Service framework and implementation strategy. Australian Journal of Rural Health 9, 22-28.
  • Lawton, J. (2003). Lay experiences of health and illness: Past research and future agendas. Sociology of Health & Illness 25(Silver anniversary Issue), 23-40.
  • Lester, H. & Tritter, J.Q. (2005). 'Listen to my madness': Understanding the experiences of people with serious mental illness. Sociology of Health & Illness 27(5), 649-669.
  • Llewellyn, A., & K. Hogan. (2000). The use and abuse of models. Disability & Society 15(1), 157-165.
  • McDonald, C., & D. Zetlin. (2004). The promotion and disruption of community service delivery systems. Australian Journal of Social Issues 39(3), 267-282.
  • McPhedran, S. (2012). Disability and community life: Does regional living enhance social participation? Journal of Disability Policy Studies 22(1), 40-54.
  • Miceli, M.G. (2010). The disavowal of the body as a source of inquiry in critical disability studies: The return of impairment? Critical Disability Discourse 2, 1-14.
  • Mulvany, J. (2000). Disability, impairment or illness? The relevance of the social model of disability to the study of mental disorder. Sociology of Health & Illness 22(5), 582-601.
  • Munyi, C.W. (2012). Past and present perceptions towards disability: A historical perspective. Disability Studies Quarterly 32(2), http://dsq-sds.org/article/view/3197/3068
  • Oliver, M. (1996). Understanding Disability. London: Macmillan.
  • Olney, M. F. & Brockelman, K. F. (2003). Out of the disability closet: Strategic use of perception management by select university students with disabilities. Disability & Society 18(1), 35-50.
  • Organisation for Economic Co-operation and Development (OECD). (2003). Transforming disability into ability: Policies to promote work and income security for disabled people. OECD: Paris.
  • Putnam, M. (2005). Conceptualizing disability: Developing a framework for political disability identity. Journal of Disability Policy Studies 16(5), 188-199.
  • Priestley, M. (2003). Disability—A life course approach. Polity Press: Cambridge.
  • Shakespeare, T. (2007). Debating disability. Journal of Medical Ethics 34, 11-14.
  • Shakespeare, T. (2005). Disability studies today and tomorrow. Sociology of Health & Illness 27(1), 138-148.
  • Susman, J. (1994). Disability, stigma and deviance. Social Science & Medicine 38(1), 15-22.
  • Taylor, S. (2000). 'You're not a retard, you're just wise': Disability, social identity, and family networks. Journal of Contemporary Ethnography 29(1), 58-92.
  • Thomas, C. (2002). Disability theory: Key ideas, issues and thinkers. In C. Barnes, L. Barton, & M. Oliver (Eds.), Disability Studies Today (pp. 39-57).
  • Thomas, C. (2004). How is disability understood? An examination of sociological approaches. Disability & Society 19(6), 569-583.
  • Thomas, C. (2007). Sociologies of Disability and Illness. Contested Ideas in Disability Studies and Medical Sociology. Palgrave Macmillan: Basingstoke.
  • Tregaskis, C. (2002). Social model theory: The story so far .... Disability & Society 17(4), 457-470.
  • Vernon, A., & Swain, J. (2002). Theorizing divisions and hierarchies: Towards commonality or diversity.In C. Barnes, L. Barton, & M. Oliver (Eds.), Disability Studies Today (pp. 77-98). Polity: Cambridge.
  • Watson, A.C. & Larson, J.E. (2006). Personal responses to disability stigma: From self-stigma to empowerment. Rehabilitation Education 20(4), 235-246.
  • Wedgwood, N. (2011). A person with abilities: The transition to adulthood of a young woman with severe physical impairment. Young 19(4), 435-454.
  • World Health Organization (WHO). (2001). International Classification of Functioning, Disability and Health. World Health Organization: Geneva, Switzerland.
  • Youthinmind. (2007). Strengths and difficulties questionnaire. Retrieved from http://www.sdqinfo.com
  • Zola, I.K. (1993). Disability statistics, what we count and what it tells us: A personal and political analysis. Journal of Disability Policy Studies 4(2), 10-39.
Return to Top of Page


Copyright (c) 2013 Lisa Bourke, Catherine Waite



Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact the web manager, Maureen Walsh. Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

ISSN: 2159-8371