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8. ISSUES OF MARGINALISATION
At Eating Disorders Queensland (EDQ) we use a person-centred approach to tailor our services to ensure we meet the individual’s needs and to reduce marginalisation.
We are committed to intentional health promotion to reach those experiencing marginalisation. We acknowledge the structural and cultural forms of marginalisation present in our society and actively work towards a more equitable social system.
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The first guidelines here are general ones for approaching issues of marginalisation and valuing the intersectional nature of our life experiences. The following guidelines stem from the seven major forms of marginalisation that EDQ has identified and work with.
52. Become aware of relevant social / cultural / political beliefs in society that create marginalisation and the intersectional nature of their impacts.
Intersectionality is a concept first developed by Kimberle Crenshaw 91 to describe the ways in which privilege and disadvantage interrelate to create multiple forms of oppression through race, gender, disability, sexuality, class and other social categories 92 .
The construct of intersectionality is rooted in the scholarship of Black feminists and critical race theorists who recognised that multiple social identities operate both independently and interactively to determine risk of discrimination, disadvantage, and disparity 93 .
While it is true that eating disorders occur in both males and females, in children, adolescents, adults and older adults; across all socio-economic groups; and from all cultural backgrounds 94 the reality is more complex than this.
Access to services, finances, as well as a range of other forms of marginalisation, all impact to make both the eating disorder and the access to treatment more complex. Recent research suggests that there are definite advantages in adopting an intersectional approach to eating disorders and that it appears that the risk of developing an eating disorder is greater with the compounding effect of different identities co-existing 95 .
Workers need to be aware of the many social and structural processes that create marginalisation as we work with clients from a person-centred approach. Workers should be encouraged to undertake training with other specialist services in a range of issues of marginalisation and to develop an awareness of the
social issues that impact on client’s lives. It is inevitable that all workers will carry some biases and at times will find themselves making judgements. A reflective approach to practice should be employed and these issues actively processed with supervisors. As workers, we can all learn a great deal from listening to the stories and experiences of our clients and advocating for their rights.
53. Each client is unique and is the expert of their own life and experiences.
Many clients with an eating disorder have been affected by multiple issues and infringements of their social and human rights and this understanding is crucial to the provision of quality service delivery. Workers must consider all factors that impact on a person’s life and their experience of their eating disorder.
This means acknowledging that each person is the expert over their own lives and we as practitioners, cannot possibly know, or be aware of, the many life experiences that have formed who they are as a person 96 .
Workers require a degree of humility in deferring ‘to the client about the client’. Only the client can know what is best for them and we as workers bring a kind and compassionate curiosity to these interactions. As workers it is our role to develop a collaborative understanding of the meaning and impact of life events on the client’s sense of self and to use this understanding to inform our approach to practice.
While workers acknowledge the different intersections that clients identify as central to their experience, we also carry hope that they will regain a sense of agency and freedom of choice in their lives.
54. Integrate an intersectional approach in practice.
There are several ways in which an intersectional approach to service delivery can be implemented. The diversity reflected in experiences of marginalisation should be evident at all levels of the organisation.
The following strategies are central to this aim:
• Acknowledgement of country is an integral part of the operations of the organisation; all groups, meetings, workshops and public engagements commence with a genuine and informed acknowledgement of country; recognition of country should be included in all signage and email signatures. • Relationships with local Indigenous community and elders are valued; including a knowledge of the cultural importance and significance of this land and the original owners. • Health promotion is specifically targeted to marginalised groups. • Office space reflects the intersectional nature of people’s lives where diversities are reflected and visible throughout the workplace; ideally clients should see aspects of their life experiences visibly reflected in the surroundings through posters and promotional materials inclusive of a range of different groups.
• Attention is paid to the use of language ensuring it is appropriate to all social groups; clients are consulted about the most appropriate language for them. • Staff appreciate the multiple areas of marginalisation and are trained in working with clients from these groups. • Clients are free to choose workers who identify as having life experiences that they relate to. • Staffing in the organisation reflects different social groups (including culture, gender, sexualities, abilities, etc). • Diversity is encouraged in all recruitment and employment. • The various awareness weeks are acknowledged and celebrated.
CULTURE
55. Acknowledge the diversity of cultural understandings and treatments for eating disorders and mental health issues.
Eating disorders occur in people from all ethnicities and cultural backgrounds 97 . There are differences in the incidence, nature, coping strategies and treatments in eating disorders across cultural groups and this is particularly the case in relation to the issue of weight stigma 98 .
Most of the research relating to eating disorders to date has been focused on Caucasian populations, but recent research suggests that racial and ethnic groups experience eating disorders at equivalent or higher rates. However, it appears that people from different ethnic backgrounds tend to be diagnosed later and referred to services less than clients from the dominant culture 99 . There is also evidence that migrants are at a higher risk of developing eating disorders 100 .
Pike & Dunne 101 note the increase in eating disorders across Asia and suggest that societal change in the form of industrialisation and urbanisation occurring independently from, or in tandem with, ‘Western’ influence are critical factors contributing to the rise of EDs in Asia. It appears that there has been a general and steady increase in eating disorders in non-Western countries in recent years 102 .
In relationship to First Nations Australians, it appears that the incidence of eating disorders here is higher than the non-Indigenous population with approximately 28% of Indigenous high school students identifying with an eating disorder. The rate for non-Indigenous students is approximately 22% 103 .
In addition, Indigenous young people are more likely to engage in activities to lose weight, increase weight and increase muscles than non-Indigenous peers 104 .
56. Provide culturally sensitive practice.
In recognising the importance of culture and its impacts on understandings of eating disorders, direct practice must be informed by culturally sensitive practice. Practitioners should be curious and allow the client the space to explain their culture and how it has intersected with their experience of an eating disorder. It is crucial to understand the impact of culture and identity on wellbeing and recovery.
In services where meal support programs are running, these programs should include a range of culturally diverse foods.
57. Develop and maintain strong partnerships with culturally specific organisations.
Partnerships with culturally specific organisations are vital to ensuring that service delivery is culturally appropriate. At times, referrals to other practitioners who have specific cultural expertise will be required to meet the client’s needs.
Reciprocal training opportunities can be negotiated where workers receive cultural competency training in exchange for the education and skill development of other workers in the sector.
GENDER
58. Service delivery is inclusive of all genders.
Most people with eating disorders are women, with over 63% of people with eating disorders in Australia identifying as female 105 . The gendered nature of eating disorders has been an issue of considerable concern to many who work in this area 106 .
While some of the core socio-political aspects of causation of eating disorders have reflected women’s experiences, such as loss of power and control, objectification of bodies, weight stigma and fat phobia, these issues also affect men and, as a result, we have seen a recent increase in both gay and straight men reporting eating disorders 107 . It appears that men have increased body image concerns with excessive exercise becoming a more common issue 108 . In fact, 40% of people with binge eating disorder are men 109 .
While women still comprise the largest percentage of people with eating disorders it is worth noting that men with eating disorders are less likely to be diagnosed or identified as having eating problems 110 . This may be partly due to the differing presentations for men with disordered eating behaviours 111 . Nagata et al., 112 suggest that disordered eating might be qualitatively different, rather than markedly less prevalent, in adolescent boys. They suggest that muscularityoriented disordered eating behaviours are more common amongst men and existing assessment tools are not adequate to test for these behaviours.
Research also suggests that transgender people are more likely to develop an eating disorder than cisgender people 113 . It is clear from the relevant research that trans and non-binary clients have a high prevalence of eating disorders and this is often connected to body dysmorphia and stigma 114 . Although there is little research in this area, it appears that transgender people may develop an eating disorder as a form of gender dysphoria and as a means of aligning their body with their gender 115 . Clearly services should be targeted to all genders and any real or perceived barriers to accessing services must be addressed.
59. Language is important.
Language is an important factor in how we gender ourselves and each other. The use of pronouns is central to this. It is important to ask clients their pronouns recognising that these may change over time and may not be an actual reflection of the person’s gender 116 . Using the correct pronouns creates feelings of affirmation and safety. Using incorrect pronouns diminishes a person’s sense of identity, self-esteem and confidence.
Workers may choose to state their own pronouns at the beginning of their work with a client 117 , which then creates the opportunity for clients to state their pronouns if they choose. Workers will benefit from listening to the way that a client refers to themselves and then mirror this. At other times workers may ask directly what pronouns the client uses. This applies in both individual work and group work and at all times workers should avoid using terms such as ‘hey guys’ or ‘ladies and gentlemen’.
60. Staff to be trained in developing their understanding of the various impacts of gender diversity.
Gender is a fluid category that may change for individuals over time. It is important to not make assumptions about gender but rather to ensure the client is supported to share their gender identity and the impacts on their experience of an eating disorder if they choose. Clients should be able to request a worker of a certain gender if they choose. If workers have not had specific training and experience in this area, they should be offered training from specialist organisations.
SEXUALITY
61. Service delivery is inclusive of all sexualities.
There are diverse sexualities and an inclusive space for people of all sexualities, identities and orientations should be provided. It is important for workers to avoid all assumptions and biases and to be curious about how a client’s sexuality might impact on their eating disorder 118 .
This is particularly important given that research suggests that lesbian, gay and bisexual people have greater rates of eating disorders than the general population 119 .
62. Language is important.
Gender inclusive language is important in all interactions with clients including intake and assessment processes and all documentation. This issue should be approached gently, taking into account changes that may happen for the client over time and the importance of providing the client with a safe environment to discuss these issues.
63. Staff require training in developing their understanding of the various impacts of a diverse range of sexualities.
Staff will require a high level of competency in the diverse range of sexualities and their likely impact on eating disorders 120 . It is important to maintain an awareness of the relevant research and knowledge base in this area.
DIFFERING ABILITIES
64. Differing abilities should be acknowledged, and an inclusive space be provided for all clients.
Differing abilities may include a range of physical, intellectual and neurobiological abilities. These varying abilities need to be acknowledged at all stages of support to ensure the client’s experience has been normalised. How these different abilities may impact on the individual’s experience of their eating disorder is important in ensuring their support needs are met.
However, there is very little research on the relationship between disability, body image and eating disorders 121 . It is acknowledged that people with disabilities face disability-specific body image issues that may, in turn, link with the emergence and expression of eating disorders 122 .
65. Language is important.
Again, the language that we use in our work is important for our clients. For people with differing abilities, language should always be person-first language as distinct from language that identifies the disability first. For example, each client is ‘a person with a disability / different ability’ as opposed to ‘a disabled person’.
66. Stay curious and person centred.
All workers must have a person-centred approach to enabling appropriate support and be curious in their communication. This ensures the sessions are focused on what is helpful for the individual and in meeting their recovery goals.
67. Barriers to meeting client needs are minimised.
All aspects of the service must be easily accessible to all clients. This includes access to the building and the layout of various rooms. At times the use of sensory items will be useful in therapy. If the client has a support person and wishes them to be involved, this should be encouraged.
RURAL AND REMOTE
68. Address limitations to accessibility of services in rural and remote areas
Access to high quality service delivery for people with eating disorders must be improved in rural and remote areas and that technology can assist in the provision of these services 123 . There is a limited number of accessible services for clients with an eating disorder in rural and remote areas. This is a priority area for lobbying and advocacy to government.
Where possible, all client services should be offered to people in these regions via Telehealth. This includes individual counselling, coaching, peer support, therapeutic and psycho-educational groups and general information and referral.
69. Build relationships with rural and remote services to increase accessibility.
Telehealth is the primary service option for people living in rural and remote areas. These services have greatly increased accessibility for people living outside metropolitan areas. The National Eating Disorders Collaboration (NEDC) national standards for eating disorders note that:
There is evidence that video conferencing provides an effective vehicle for the provision of psychotherapy for people with eating disorders. A number of studies (e.g. Simpson, Knox, Mitchell, Ferguson, Brebner & Brebner, 2003; Mitchell, Myers, Swan-Kremeier, & Wonderlich, 2003; Mitchell, et al., 2004; Simpson, Bell, Britton, Mitchell, & Johnston, 2006;) have found video therapy (telepsychology) to be as effective as face-to-face therapy in terms of patient outcomes for people with bulimia nervosa. Video therapy has also been identified as a cost effective approach, particularly for people living in remote areas 124 .
In addition to these services, accessibility can be increased by providing support and information to workers in other services in rural and remote locations.
MARGINALISED BODIES
70. Recognise the impacts of weight stigma and fat phobia.
Negative attitudes to weight gain and ‘fat-negative’ attitudes are now a common part of our society and of women’s lives as fear of fatness and disdain toward fat bodies pervades attitudes about bodies and body size 125 . Research suggests that women experience fat stigma far more than men given that women are expected to be physically attractive and desirable 126 .
The impacts of weight bias are widespread in the lives of women 127 including issues such as discrimination in employment, reduction in income, being less likely to have a partner, and the more insidious and dangerous issues where individuals are disliked and ridiculed 128 . Unfortunately, the common suggestions for addressing weight stigma relate more to self-discipline and control rather than the broader social, cultural, and political context of weight stigma 129 .
The pervasive impact of weight stigma and fat phobia can affect accessibility of services for a variety of reasons. Clients often report that they do not feel they deserve support because they blame themselves for their eating disorder. It is important to challenge weight stigma in society and to positively contribute to the ongoing discourse about thinness and health.
71. Eating disorders come in all shapes and sizes.
Eating disorders are not about weight 130 . Eating disorders come in all bodies with a range of different shapes and sizes. There is also a range of physical body differences that can cause self-consciousness and restrict access to relevant services. This stresses the importance of psychoeducation for clients and community awareness campaigns more generally.
It is also important to challenge the notion that to access specialist eating disorder services, a client must have a diagnosis of an eating disorder. This includes the way in which some diagnoses are seen as more or less serious. For example, separating atypical anorexia nervosa from anorexia nervosa downplays the significance of the person’s experience of their eating disorder 131 . If a person feels their relationship with food is causing them distress, they deserve access to quality services and practitioners who can assist them.
72. Proactively challenge body stigma through advocacy and education.
Challenges to body stigma are required at individual, service sector and structural levels in recognition that eating disorders affect all body types. It is important to reiterate that eating disorders are most commonly a response to some other problem in a person’s life rather than solely being about eating and bodies. A variety of effective strategies can address these issues such as social media campaigns, public awareness campaigns, and community engagement activities including contact with schools and GPs.
FINANCIAL CAPACITY
73. Provide a diversity of service options according to financial capacity.
While there is no evidence to suggest that eating disorders occur more or less commonly in different socio-economic groups, there is no doubt that accessibility of services is limited with limited financial capacity 132 .
Therefore it is important to provide a range of low- or no-cost services to ensure those most in need can access quality services 133 . These services may be provided through state government funded programs or through Commonwealth funded programs such as Medicare or NDIS funding. Organisations should advocate for a bipartisan approach to funding allocations across both state and Commonwealth funded programs.
Many low- or no-cost services are limited by high demand and long waiting lists and therefore it is difficult to offer long-term support where it is needed. This is partly due to a lack of available alternatives such as bulk billing practitioners.
74. Advocate to government for increased access to low or no cost options for clients with eating disorders.
Advocacy efforts to increase accessibility of services for those with limited financial capacity is essential. Increased funding for community-based and health services, in addition to ongoing review of the Medicare program for eating disorder specific services will ensure equitable access to specialist services for all people with eating disorders. This seems particularly relevant given the huge cost to the community that eating disorders create 134 . A greater investment in the provision of lowor no-cost services to people with eating disorders would greatly lessen the overall costs to society.
