SUBMISSION TO COMMENT ON THE DISCUSSION PAPER: IMPROVING THE
EMPLOYMENT PARTICIPATION OF PEOPLE WITH DISABILITY IN
AUSTRALIA
Shalene Werth
Lecturer, University of Southern Queensland
This submission is based on my PhD thesis and a separate research project on the experiences
of students with disability at university. Acknowledgement goes to Prof David Peetz and Dr
Kaye Broadbent (supervisors).
1.1: What are the main barriers faced by people with disability in employment?
There are an increasing number of studies which examine the experiences of individuals with
chronic illness1 at work, some focus on discussing stigma (Goffman 1986), or concepts such
as passing and covering (DeJordy 2008; Myers 2004). This research found that the
behaviours2 of women with chronic illness were critical to their ability to remain in the
workplace after diagnosis. These behaviours highlight the unique manner in which
individuals need to behave if they wish to maintain their credibility in their workplace.
Success at work of women with chronic illness depends on the management of their illness,
the attitudes of their supervisors and their labour market power. They do this through
management of their illness, management of their own behaviours in order to access
understanding and accommodations from their supervisors, and sometimes by increasing
their labour market power through undertaking tertiary study (Werth 2012).
The way forward for the continued success for these individuals in their workplaces lies in
the promotion of understanding for chronic illness within organisations. The data from the
study shows that those with illness are expected by their employers to manage their own
illness circumstances separately from their work, they also need to advocate for themselves in
order to manage their illness at work. Australian Network on Disability found that ‘further
initiatives by government and business will be necessary to achieve a significant
improvement in labour market outcomes for people with disability’ (2011, p. 25). The
Australian Network on Disability goes on to say that ‘more needs to be done to address
employer concerns and provide relevant, effective and economical programs to assist people
with disability’ (2011, p. 25). The difficulty with this statement is that it focusses is on the
‘deficit’ of the individual with chronic illness or disability rather than on the ‘deficit’ attitudes
of employers. From the data, it can be seen that those with chronic illness are already putting
considerable effort into managing their working circumstances, some with very little
assistance from their employers, whether or not they have disclosed.
There are a number of factors which influence an individual’s decision to disclose, these
include: severity or variability of impairment, labour market power, stigma associated with
impairment, expected management and peer support, available flexibilities, outside influences
1
The terms chronic illness, disability and impairment are used interchangeably.
‘Behaviours’ here refers to emotional labour, emotion work or aesthetic labour. It also includes the new
concept of adaptive work.
Adaptive work is how individuals with chronic illness engage with others in the workplace in order that others
or the organisation, adapt in some way to meet the needs of women with chronic illness. It may be undertaken
by those who require some adaptation or accommodation from their workplace to assist with managing their
work and their illness. It occurs after disclosure (Werth 2013)
2
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(such as caring or other responsibilities) and the individual’s preference for privacy (Werth
2012). The factors in this list which most commonly play the greatest role in mitigating the
risk associated with disclosure are labour market power of the individual and management
support. The factor which is most likely to force disclosure is severity or variability of
impairment or illness. Where the impairment is such that disclosure is required, high levels
of labour market power or management support may offset any possible disadvantage
associated with disclosure of the impairment. It should be noted that disclosure is not always
a difficult decision with negative outcomes, however, there is an increasing body of research
which shows that this is very often the case for those with an impairment (Vickers 2012).
They are in a position where their personal characteristics may be negatively judged
by peers and supervisors, despite their professional abilities. Explanations about
variability of symptoms can result in a loss of professional credibility. As employees
are assessed according to their knowledge, skills, and abilities when selected for a
position, and their performance is reviewed regularly, they are, in more subtle ways,
under scrutiny to evaluate their continuing conformity with expected norms at work.
The problems encountered by these employees in the workplace might include: limited
career options, disadvantage or discrimination, poor job quality, and lack of
accommodations or understanding (Werth 2012).
2.1: What are the practical and workable approaches to make a real improvement to
employment outcomes and workplace equality for people with disability? How would
they work?
Ideally social change is needed to develop, in managers and supervisors, an understanding of
disability or illness. However, this would be a long term objective. In the interim, measures
which attempt to balance the inequities in power between workers with disability and their
employers need to be undertaken. These are, in some ways, not greatly different to those
currently utilised by workers with lower levels of labour market power in their workplaces.
Labour market power can be enhanced through union membership, improved legislation,
increased human capital.
In the same way that an individual with disability has intelligence which is not diminished by
their disability, nor is the capacity to work or continue working as an individual with chronic
illness is not defined by their illness. For the sake of some understanding and flexibility,
these individuals should not be sidelined in the workplace. The National Mental Health and
Disability Employment Strategy states that:
An important aspect of social inclusion is the opportunity to get a job. Having
employment provides obvious benefits like higher income and greater self-esteem, but
it can also help connect people with society by establishing friendships and support
networks (Australian Government 2009, p. 6)
This may be the case, however the work environment needs to provide the understanding,
flexibility and policies to support individuals with disability or chronic illness in order to
assist with achieving these goals.
2.2: Would introducing disability employment disclosure arrangements improve the
employment of people with disability? What are the likely benefits of such
arrangements? Should they be voluntary or mandatory?
2.3: What are the key risks that would need to be addressed?
The agency displayed by participants was important in the way they managed their work and
their illness. One participant (Mary) undertook the management of information about her
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illness. Her choice was to minimise her illness information and only disclosed that which was
necessary to achieve her work related goals. Working in a managerial position gave her
immense job satisfaction. She also had a personal attitude which formed part of how she
managed her illness.
It’s not what life throws at you, but it’s how you handle it that makes you who you
are.
After her disclosure Mary was subjected to her employer’s pre-existing understandings of
illness for a manager with her responsibility. Munir et al point out that ‘one of the main
problems in creating a responsive and supportive work environment is overcoming barriers to
disclosure and attitudes towards chronic illness by employers’ (2005, p. 1405). Vickers points
out that there are conditions regarding care and concern in the workplace. ‘The
preponderance of efficiency at any cost, has become a guiding truth, that’s business, it’s
capitalism, it’s survival. It seems that humanitarian concern predominates only if it makes
good business sense’ (2001, p. 77). There is research that shows that employer understanding
of the circumstances of those with illness results in improved outcomes where workers have
previously disclosed.
Workplace policies and benefits which support employees suffering with mental
health disorders and provide access to evidenced-based care adhering to best
practice guidelines may improve the quality of life of employees and lead to reduced
absenteeism, disability and lost productivity (Burton et al. 2008, p. 90).
The potential that employers have to contribute to improved outcomes, for those with illness,
is not measured in the many reports that have emerged on the problems associated with work
and chronic illness. Women with chronic illness, as shown in the quantitative analysis are
more likely to experience reduced satisfaction with their employment, are more likely to be in
part-time or casual positions and would prefer to work a greater number of hours. They are
also less likely to be employed in professional or managerial occupations and are at greater
risk of experiencing dissatisfaction with their pay. Disclosure results in individuals being
assessed by the expectations of society, these are such that workers with chronic illness
continue to be marginalised, at times under the guise of care and concern, and at other times
the marginalization is presented because these people, although capable, are not allowed to
‘fit in’ and fully participate in the workplace because they are different. Their difference is
often treated by organisations as poor performance (when it is not) or as an inability to
conform to the social requirements of the workplace.
AIHW (Australian Institute of Health and Welfare) found that there is a ‘very large potential
for economic benefit to be gained if the… impact of chronic disease were reduced’ (2009, p.
30). The impact of chronic illness may be minimised by health initiatives, but it can also be
influenced by improving workplace understanding of the issues associated with illness in the
workplace. The AIHW report went on to comment that:
The chronic conditions that were shown to provide the greatest contribution to loss in
full-time employment were arthritis and depression. Given the diverse nature of these
conditions, workplace responses to accommodate people with these conditions would
necessarily be correspondingly diverse (AIHW 2009, p. 30).
The understanding of what actually happens in the workplace is lacking After disclosure the
data showed that the workers’ response to their employers almost always required some from
of understanding or flexibility.
2.4: How are disclosure issues best resolved? What would better practice look like?
2.5: How are disclosure and privacy issues best addressed?
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The United Nations (2012) list a number of ways that intolerance can be countered, these
include: appropriate legislation, education, access to information, individual awareness and,
local solutions. In order to improve the attitudes of employers to towards illness, regulatory
bodies need to implement and enforce legislation, improve education and availability of
information in order to raise awareness of issues relating to chronic illness. However, these
strategies are counteracted by ‘widespread evidence of barriers’ (World Health Organisation
2011, p. 9) which restrict participation for people with disabilities. These include, among
other things, inadequate policies and standards, and negative attitudes. More positively Anstis
(2010) in her research on managing chronic illness in the workplace, identified a number of
policies and practices which could be implemented. These include: awareness raising
campaign, workplace flexibility, accommodation of return to work for those with chronic
illness and, training and professional development. The evidence is available regarding the
importance of changing the workplace attitudes toward chronic illness, however
recommended strategies need to be enforced to ensure improved outcomes.
2.6: What are the barriers to a person disclosing that they have a disability to their
employer?
A broader approach is needed to address the problem of improved participation and
workforce outcomes. The problem may have reached the point where there is a stagnation in
the improvements currently achievable for women with chronic illness.
From 2003 to 2009, there was no significant change in the national labour force
participation rate or the national employment to population ratio for people with
disability – rates remain significantly lower than for people without disability (COAG
Reform Council 2012, p. ix).
The variety and number of reports, commissioned by government and disability support
bodies, which examine working outcomes is also evidence that there is concern about these
problems.
Women sought to avoid disclosure because they feared the possible reactions of others at
work. Those who had disclosed attempted to access understanding and accommodations.
They also needed to manage the reactions of others when their symptoms became obvious.
There was often insufficient understanding and accommodations available for women with
chronic illness in their places of work. Support for those with illness needs to come from
within organisations, and at this point in time there is little obligation for workplaces to do so.
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List of References
Anstis, H 2010, Managing chronic illness in the workplace, Municipal Association of Victoria.
Australian Government, National Mental Health and Disability Employment Strategy, 2009, DEEWR,
Canberra.
Australian Institute of Health and Welfare, Chronic disease and participation in work, 2009, Canberrra.
Australian Network on Disability 2011, The economic benefits of increasing employment for people with
disability, Deloitte Access Economics.
Burton, WN, Schultz, AB, Chen, C-Y & Edington, DW 2008, 'The association of worker productivity and
mental health: a review of the literature', International Journal of Workplace Health Management, vol. 1, no. 2,
pp. 78-94,
COAG Reform Council, Disability 2010-11: Comparing performance across Australia, 2012, Sydney.
DeJordy, R 2008, 'Just passing through: stigma, passing and identity decoupling in the workplace', Group &
Organization Management, vol. 33, no. 5, pp. 504-31,
Goffman, E 1986, Stigma: notes on the management of spoiled identity, Simon & Schuster Inc, New York.
Munir, F, Leka, S & Griffiths, A 2005, 'Dealing with self-management of chronic illness at work: predictors for
self disclosure', Social Science & Medicine, vol. 60, pp. 1397-407,
Myers, KR 2004, 'Coming Out: Considering the Closet of Illness', Journal of Medical Humanities, vol. 25, no.
4, pp. 255-70,
United Nations 2012, International Day for Tolerance, viewed 29 November 2012,
<http://www.un.org/en/events/toleranceday/background.shtml>.
Vickers, M 2001, Work and Unseen Chronic Illness: Silent Voices, Routledge, London.
---- 2012, ''For the crime of being different...': Multiple Sclerosis, teams and stigmatisation at work - lessons
from a case study', Employee Responsibilities and Rights Journal, vol. 24, pp. 177-95,
Werth, S 2012, 'Negative Events, Positive Outcomes: Improving Labour Force Outcomes via Tertiary Study for
Individuals with Disability and Chronic Illness', Australian Bulletin of Labour, vol. 38, no. 4, pp. 345-66,
---- 2013, Working with chronic illness: a new perspective, 27th AIRAANZ Conference, Perth, 6-8 February
2013.
World Health Organisation, 2011, World Report on Disability, Geneva.
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