Message Book for Disability Services

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Message BookF O R D I S A B I L I T Y S E R V I C E S

A RESOURCE FOR SERVICE PROVIDERS WORKING WITH ABORIGINAL PEOPLE WITH DISABILITIES

2 Message Book for Disability Services A resource for service providers working with Aboriginal people with disabilities

We have written this book to answer some of your questions about working with Aboriginal and Torres Strait Islander families who care for children with disabilities. Every family is different, each with their unique strengths and particular challenges. Because every family is different, the information in this booklet is presented in a general way. When working with Aboriginal families, acknowledge any biases, recognise your expectations and avoid making assumptions. This book consolidates existing resources and shares the stories of families on their empowering journey to knowledge.

Pika Wiya Kuthupa is Wongi for ‘not sick, different one’.

The logo by Aboriginal artist Penny Evans, illustrates the different journeys of families.

The Tjina Maala logo was adapted from the project logo. The Tjina Maala Centre was established in August 2014 to help Aboriginal families caring for people with disabilities along their journeys.

Tjina maala nooda ngarli ninti.(Wongi for ‘going on a journey’ from knowing little to ‘us all knowing’).

Message Book for Disability Services 3 A resource for service providers working with Aboriginal people with disabilities

We would like to thank the families who participated in the Storytelling Circles with special mention of Tjina Maala ‘Community Reference Group’ members Wendy Dimer and Penny Evans.

Acknowledgement to Community Engagement Officer, Margaret Gidgup, who spent a year in Kalgoorlie talking with Aboriginal mothers, fathers, grandparents and young people with a disability and hearing their stories. Names and some details have been changed in the story quotes of this publication to protect privacy.

Appreciation extended to volunteer student, Maira Braga, for her assistance with this resource. Ongoing thanks to Community Engagement Officers

Lenice Forman and Deanne Williams for their invaluable contributions and work at the Tjina Maala Centre in Kalgoorlie.

The portraits used in this booklet have been taken by talented photographer Belinda Mason with consent from each individual. Many thanks to Gayle Rankine, John Baxter, Jake Briggs, Maree Kalkeeyorta and Yami Lester for sharing their images. For more of Belinda’s work visit www.unfinishedbusiness.net.au

Many thanks are extended to Kalgoorlie Aboriginal artist Ashley Fitzgerald for his paintings ‘Kalgoorlie Bush After Fire’ and ‘Hunting Ground’, and his contribution within the disability sector. Gratitude to Aboriginal artist Penny Evans for her work on the original Pika Wika Kuthupa

logo. Acknowledgement of back cover artwork by Wendy Wright, Coordinator of Aboriginal Disability Advocacy Network of WA.

The project team acknowledges Whadjuk Country in Perth, and Wongatha Country in Kalgoorlie, and pays respect to elders past and present. We acknowledge the cultural diversities of Aboriginal and Torres Strait Islander people. The term Aboriginal has mainly been used for brevity.

The development of this resource was funded by the Non-Government Centre Support (NGCS) Scheme and is an initiative of Ability Centre.Readers are warned that some images may include pictures of persons since deceased.

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Acknowledgements

http://www.unfinishedbusiness.net.au

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Contents

Aboriginal views of disability ..................................... 6

Diagnosis and follow up ............................................. 12

Aboriginal ways of parenting ................................... 13

Communication and language ............................... 14

Poverty and disadvantage ......................................... 17

Holistic health ................................................................. 18

Empowering families ................................................... 21

Culturally safe staff and programs .......................... 23

Confidentiality ................................................................ 25

Time .................................................................................... 26

Other cultural considerations ................................... 28

Racism ................................................................................ 30

Strategic workforce ....................................................... 32

References and resources .......................................... 36

Notes ...................................................................................38

Other Tjina Maala Resources .....................................39

4 Message Book for Disbility Services A resource for service providers working with Aboriginal people with disabilities

‘Hunting Ground’ painting by Ashley Fitzgerald


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Being an Aboriginal, I think it gives a great deal of pride and sense of purpose as well. So a lot of the work I do is going out into the community and talking with people, whether it be school groups or senior citizens. Making those connections in the first place and saying, well yes, there are a lot of good strong Aboriginal people around, they have got their head in the right place and they can not only have a good in-depth understanding of the past, but also look forward to the future as well as signal that there are brighter tomorrows, and as a collective group, that we can change the attitude of people to our kids and grandchildren and nephews and nieces to give them better opportunities at life than we had, I suppose … that’s important.

JOHN BAXTER, LATJA LAJA / NARUNGGA MAN

BOARD MEMBER, FIRST PEOPLES DISABILITY NETWORKBOARD MEMBER, RECONCILIATION VICTORIA

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‘ STANDING TALL’ photo by Belinda Mason


Did you know that in many Aboriginal communities:

• a disability is not viewed as being sick, just being different.

• there is no direct or translatable word for disability.

• wellbeing is viewed holistically – having a strong spirit, body and mind.

• children are often cared for and treated in the same way whether or not they have a disability /are ‘different’.

• understandings about the causes of disability can range from pay-back, curses, wrong way marriage, domestic violence, substance abuse, or cultural beliefs (e.g. the mother stepped on a goanna’s back when pregnant) .

• if a disability is seen as pay-back for past wrongdoing, there may be guilt or shame – families might not want to engage with disability specific services.

Australian research has found spiritual beliefs about the cause of disability are important for service providers to understand. For example, ‘the cause of a child being born with a physical disability in a rural or remote community may be attributed to the child’s mother doing something accidental or ill-advised when she was pregnant such as treading on the back of a goanna. These causes do not appear to result in discrimination against the family or child’ (Disability Services Commission, 2006, p.5).

Attitudes also differed between mental and physical disabilities, with intellectual or behavioural problems being attributed to supernatural and medical causes.

Aboriginal views of disability


Many Aboriginal communities do not differentiate between ageing, disability and mental illness.

Health for Aboriginal people is viewed within a holistic and community lifestyle framework, which is linked to past and present issues, not necessarily individualised or compartmentalised (Brown, 2001).

Ariotti’s (1999) study on the social construction of disability in Aboriginal communities found that people with impairments were ‘treated and cared for no differently from other members of the group or clan’ (p.218). He reported that there was no word for disability for the Pitjantjatjara people who live in the region where Western Australia (WA), South Australia and the Northern Territory meet. Contemporary Anangu people adapted the word nyumpu, meaning crippled or maimed to understand the term ‘disability’, however some objected its use as they believe it ‘labeled and stigmatized, not about their personal limitations, but about their perceived social standing’ (Ariotti, 1999, p.219).

A research study revealed that there were distinctions made between accidental and congenital disabilities, the latter often being linked to maternal wrongdoing. It also documented that ‘people were often not aware of how much they were limited by their condition. Some people had different expectations of health and different perceptions of what is normal and expected’ (Senior, 2000, p.9).

A summary on Aboriginal culture and disability found that (O’Neill et al. 2004, p.3):

• Aboriginal people with a disability are generally not stigmatised in their communities.

• some disabilities may be seen as a ‘pay-back’ for a past wrongdoing, and others may be seen as something ‘special’.

• independence may not be seen as a major issue in some Aboriginal communities.

• disability may be viewed as a family or community problem, rather than a personal one.

• some people with severe disabilities may be seen as the responsibility of ‘welfare’; and a person may be identified and named after their disability (e.g., a person with an eye injury may be known as ‘one eye’).

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“I think Connor always knew that he was different. And I couldn’t force him to be, you know what I mean that child, I needed to snap out of it myself.”

“I’ve sort of notice it, he is different when he started going to school, because he was like segregated from the little boys, you know, and doing his own, but he was having fun doing his thing.”

“Not sick, but different, yeah.”

“Because when they were children born with disability back in them days, it felt like you got, it felt like well, especially in the Aboriginal way, ‘oh, wonder why they had a disability kid, oh parents must have been related’, you know things like that.”

Aboriginal Mums…



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Message Book for Disbility Services 9 A resource for service providers working with Aboriginal people with disabilities

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“That’s why I wanted to keep Connor to myself, I didn’t want no one to know so no one could talk about him, talk about the family you know. But now I think as you get as you get older and know that there’s more help out there, you just talk now. Because if I were still shame I wouldn’t be sitting here now, I just wouldn’t have came.”

Aboriginal Mum

Different people view disability in a different ways. Some families experience feelings of shame, pity or may over-protect their child. Some families may hide their family members away from services because of fear and mistrust.

Common emotions experienced by parents may be:

• guilt (‘why have I deserved this or what did I do wrong?’)

• shame or fear (‘what will other people think?’)

• anger (‘is this punishment?’)

Many parents of people with a disability may experience confusion and uncertainty especially during the diagnosis stage when they are told how their child is different.


• Low income: Many Aboriginal families live in poverty and often cannot afford to care for more needy members of their family. Added expense in caring for a person with a disability can disadvantage other members of the family.

• Gender: Aboriginal women usually care for older parents, children and grandchildren. Aboriginal women may not be permitted to offer physical aid to men, which poses a difficult situation as caring is not regarded as part of the mens’ role.

• Stigma: Some Aboriginal people feel that there is stigma associated with being registered with a disability services agency and need to know of alternative supports. Others may have a misconception that some services are only available to non-Aboriginal people.

• Shame: Shame was identified as a barrier to accessing hospitals, clinics and rehabilitation, especially in non-Aboriginal settings. Children experienced a sense of shame when being singled out of the class by a non-Aboriginal therapist. When this occurs, group therapy sessions have been effective for reducing the shame experienced by some students. School-based therapy also reduced the shame felt by parents accessing mainstream services.

Some research into Aboriginal cultures has found that a person with a disability is the responsibility of the family (not the community) and that he or she is included within the kinship link of the extended family (Ariotti, 1997; Ariotti, 1999; Disability Services Commission, ‘Getting Services Right’, 2006). However, there are also cases where the breakdown of traditional family structures has led to neglect. Access to health services is also indirectly affected by the following factors (DSC, 2006; Gilroy, 2012, O’Neill, 2004)



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• Intergenerational trauma: Aboriginal communities have experienced intergenerational trauma since colonisation. Many families impacted by forced removal policies experienced symptoms of post-traumatic stress. Since then, generations of Aboriginal people have inherited the pain and trauma, impacting mental health, family structure and parenting.

• Family allegiances: Family allegiances and feuding can make accessing services difficult. Families may choose services in another town due to feuding family or community members.

• Lack of awareness: Carers are disadvantaged if they are unaware of services available. Many Aboriginal families caring for people with disabilities do not have sufficient support.

• Trust: Some Aboriginal people have less trust in the health system and in health care providers than the rest of the community, based on previous experiences of racism with doctors, nurses and so on.

• Grief: The burden of grief and stress carried in many communities can lead to inconsistencies in care.

‘KALGOORLIE BUSH AFTER FIRE’painting by Ashley Fitzgerald

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Diagnosis and follow up

As with most families, receiving the initial diagnosis might be difficult, and many Aboriginal families may not be familiar with the disability or disorder. In regional areas, access to services and supports are more sparse and transient families may be lost between systems.

• Don’t assume that families know what common therapy and medical terms mean e.g. spina bifida, occupational therapy, respite.

• Some families might experience discomfort or anxiety when with a health professional. This can lead to avoidance of future access.

• If families are not eligible for your service, is there another service to which you are able to refer them?

• Many Aboriginal people have a holistic view of health, so their immediate practical needs might need to be addressed before a complete therapy or medical assessment can be made.

“Thomas might have Autism, so we waiting a year for an Autism test and they came to Kalgoorlie, and they um did the test and were with Thomas, 2 hours at school and 4 hours at home with me, and got up and told me he doesn’t have Autism, he’s got speech delay and sensory disorder and walked out… Just walked in walked out and never saw them again. So we didn’t get any referrals or what do I do now if he doesn’t have Autism, what’s next?”

Aboriginal Mum


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Aboriginal ways of parenting

“She was wetting her pants at school; the last principal up there, thought there was something fishy going on. She has a weak bladder, if she doesn’t take medication she’s very loose down that area… ‘How would you like to be coming to school with no knickers on’, I said, ‘Excuse me, that kid walks out of that house every day with knickers on, the reason why she ends up at the end of the day with no knickers on, is because she pisses her pants, she chucks it in the bin and has a shower at the school’.”

Aboriginal Grandmother

There are differences in parenting styles between Aboriginal and non-Aboriginal people. Sometimes cultural values and practices can be misinterpreted as ‘neglect’. Here are points for consideration:

• There is an emphasis on controlling the environment rather than controlling the behaviour of the child.

• Aboriginal children are expected and encouraged from an early age to be part of decisions and activities that impact on their lives. A hands-off approach does not imply neglect.

• Children are the responsibility of family, community members and sometimes non-biological ‘family’ – therefore they may have many homes and ‘parents’ as well as inconsistent parenting styles.

• There may be mistrust in regard to accessing services, e.g. respite. Parents may also think that no one else can look after their child, especially if they have special needs.

• For some parents, a ‘parenting program’ may represent assimilation. It may seem like having to be a ‘good’ or ‘successful’ parent. It may seem to imply that they are a ‘bad’ or ‘unsuccessful’ parent.

• Sometimes being singled out or taking credit is not considered culturally appropriate. It can be ‘shameful’ to those receiving the praise.

• Family issues and health conditions may account for different behaviours of the child. Parents may feel condemned when services or schools question parenting styles. The fear of having their child removed is a very real and large barrier to access.

Communication and language

For some Aboriginal families, terminology used by health professionals might be new or confusing. English might be a second language and literacy limited. Some people may not speak, read or write English very well.

• When using medical terms, explain in simple terms what it is and if possible demonstrate it; e.g. Asthma (when people can find it hard to breath), Cerebral Palsy (when your muscles don’t work well), Global Development Delay (your child may be slower to learn new things).

• Consider using complementary methods of communication, such as pictures, sign language, or provide an interpreter where necessary.

• Be mindful that your body language will give a message.

• Be aware of your words and terminology used.

• Written information on medicines could include pictures to assist in communication (e.g. picture of sun/moon could indicate day/night).

• Consider acknowledging sensitive questions right from the start. Beginning a question with “Maybe it is a bit awkward to ask you about this...” might make the person feel more comfortable in responding. Using humour where appropriate can be helpful.

• Write and speak in ‘Easy English’ (see References and Resources section for more information).

• Speaking gently and slowly can deepen a listener’s respect and openness. Lowering your pitch and speaking rate is perceived as being more caring and sympathetic.

• Avoid finishing sentences for people as they may just be searching for the right words to express what they are trying to communicate. Give time to do this.

• Train yourself to stay focused on the individual’s words, facial expression and body language.

• Be friendly.

Health professionals need to foster self-efficacy and assist families to believe they have control of over their situation and decisions.

• It is important for Aboriginal families to know that they have control over the situation.

• Families are there to work together with health professionals.

• To trust the system, families need to feel they are entirely capable of making a decision with the provider’s assistance if required.

• Note the emergence of medical authoritarianism (i.e. the belief in hierarchical relationships between providers and patients).

• Non-verbal communication: body language, facial expressions or silence, see http://bit.ly/nonverbcomm

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Aboriginal Mums….

“Not quite sure the word but it’s like um… it was like he was born with like slow development sort of, tiny, premature he was born a bit early he’s had ear trouble with his ears all his life. They said that he wouldn’t be able to walk ‘cause he’s very flexible with his hands and things like that”

“Got about the fourth week and they said… we’ll do a, ultrasound, and so I went across to do the ultrasound… then this little girl was doing [the ultrasound], then she’d disappear then and then she’d come back… another

woman would come back then… I’m thinking what’s going on here, you know I’m lying there, and then the older woman, the last one that came back came and she says ‘oh I think this is hydrocephalus… and I’m lying there thinking, what’s hydrocephalus, then they disappeared again and left me laying at the bed… and I’m thinking ‘goodness, what’s hydrocephalus?’”

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“Didn’t really understand what the doctors were talking about with the condition, and stuff so… yeah, it was just too overwhelming.”

“And a lot of people that do come from the community and that you know, they don’t understand what the doctors are telling them and things like that, to have that interpreter and just someone to keep them company is, makes them feel comfortable too you know.”

Aboriginal Mums

Aboriginal cultures often have an indirect style of communication, while Western cultures are more direct. Aboriginal conversations follow a meandering pathway rather than a linear approach. If there is something that needs to be done, try to avoid being too prescriptive about ‘what’, ‘when’ and ‘how’. Ask the client in which ways they could achieve their goals. Make it easy for people to participate in a two-way conversation, giving control to families. Always check that the person understands the information and recommendations you provide.

Communication and language


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Generational poverty refers to people born into poverty. Aboriginal families in generational poverty caring for children with disabilities are disadvantaged two or three-fold. Often there has been generation after generation born into poverty.

• Some families struggle with basic needs such as employment, housing, healthy meals, and providing a safe home. These priorities often override therapy appointments.

• Transport can often be an issue.

• Looking after a child with a disability is costly. Furthermore, some families have only one income earner.

Poverty and disadvantage

“That’s why I’m broke all the time, I got no food, whatever money I can get for food, I can get it, other than that, I got diddly squat, because I got to run my kids to the doctors, run myself to the doctors, I got to go to Perth in November on the 6th, I won’t even have money to do that, I’ve got to put that appointment back.” Aboriginal Grandmother


• Health and wellbeing does not apply only to physical health.

• Overcrowded housing, relationship breakdown, poor diet and deaths in the family all impact a family’s wellbeing.

• There are usually multiple services used and yours may be one of several, (e.g. health, housing, school, legal advice, employment, Aboriginal services).

• The service you provide is one crucial element to a wider tapestry. “Are you in communication with other services involved?” “Is there a key contact person your services can liaise with?” (e.g. Aboriginal Health Worker’ My Way Coordinatior, National Disability Insurance Scheme Planning and Support Coordinator, or advocate).

• Families might not think that it is relevant if you don’t ask (e.g. “Is your child seeing a private therapist?”).

• As Aboriginal people may have a holistic view of health, their immediate practical needs should be addressed before a complete assessment can be made.

• Take an interest in where the client comes from, as this goes a long way to establishing rapport. Share your background too in this cultural exchange.

Holistic health

“And I had to get her off her mother because nobody would get her, because DCP jumped in, and they wouldn’t give her to her mother, they had to give her to someone else to look after, when, when you’re trying to look after the kid… I was going to adopt them all, a couple more kids, but now I’ve got a black mark against my name, because of this one kid, that’s got no ears, that doesn’t listen, ‘take your insulin’, ‘take your medication’, ‘if you don’t do that you are going to get body parts cut off, he going to be beyond dialysis like me.”



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I’ve got my daughter, who was diagnosed with cerebral palsy since birth and my boy, who is 13 years old. He just returned from the boarding school because he was too homesick. He was selected to go Brisbane Boys’ College, but he said “Mum don’t leave me here.” I gotta go back home, so if someone was there to take care of my girl for me, I would have stayed behind for my son to get a better education and to understand what it is like outside of here. There’s a big world out there.

MAREE KALKEEYORTA

APALECHE CLAN, WIK LANDS

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‘ MOTHER’ photo by Belinda Mason


‘Our Indigenous people of Australia are 3 per cent of the total Australian population. But of that 3 per cent the last statistics reveal that at least 50 per cent is affected by some form of disability. So it’s very bad numbers for our people. You must remember there is no word for disability in any Indigenous language. So a lot of our people haven’t connected with agencies, one, because of colonisation and the fact that you have the ‘Stolen Generations’, it’s the fear of having a child removed from them and growing up institutionalised. I am extremely passionate about it, but now I am here, fighting the fight, fighting the fear, fighting the racism. We face a double discrimination. Discrimination because of our disability and because of our race. Racism is based from ignorance I say. But having a disability, you get a double whammy.’

GAYLE RANKINE

CHAIRPERSON FIRST PEOPLES DISABILITY NETWORK

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“

‘NGARRINDJERI WOMAN’ photo by Belinda Mason


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The roll out of the National Disability Insurance Scheme (NDIS) will bring about changes to the way disability services are funded, accessed and delivered in WA. This is intended to give service users greater choice and control in their person centred planning. There are currently two trials underway in WA – NDIS (provided by the Commonwealth in the Hills area) and WA NDIS My Way (provided by the WA State Government in the Lower South West and Cockburn/Kwinana areas). If successful, other areas are likely to be included.

There are often disproportionate balances of power and controls between professionals and families. Being under-informed affects families’ decision-making and therefore the health outcomes of the family. Some families may not feel comfortable accessing mainstream services, speaking up or asking questions. Some people may be naturally shy or have trouble asserting themselves. You can empower families to advocate for themselves by considering the following:

• Let the family know they can bring a support person, like mum, dad, brother, sister or friend.

• Ask families how they want to be informed (e.g. face-to-face or telephone).

• It may be helpful to let families know who will be at the meeting, especially if there are several service providers attending.

• Let the family know it is okay for them to ask questions. Prompt and encourage them to do so.

• Encourage participation, asking family members their opinions and suggestions .

• Suggest to families they write down questions for health workers or keep a checklist.

• Let the family know what services are available and what they do e.g. “Our social worker can help link you in with other services in the community and provide counselling for your child.”

• Let families know what options are available to them, e.g. “appointments can be at home, at school or at play group.”

• Let families know that setting goals is about family priorities and concerns.

• Discussions can be emotional and this should be acknowledged.

• Sometimes having time-out is good. Let families know this.

• Some families will not tell you what they don’t understand. Some parents may just agree if they don’t understand because they don’t want to embarrass themselves.

• Be mindful of questions that can seem intrusive. Answers of “yes” may not be accurate as the client may be attempting to take the path of least resistance through a situation that is uncomfortable for them.

• Let families know realistic wait times.

• Affirm for families that it is for them to make the final decision.

Empowering families

“And you can’t feel comfortable with Wadjellas, because sometimes they don’t listen, and they don’t understand where you’re coming from or they’re just arrogant.”

Aboriginal Mum

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“I felt so embarrassed, so ashamed [being ignored in the waiting room]…”

Aboriginal Dad

“Because she knows Aboriginal people, and she know what they can get, and diabetes that’s common with um Aboriginal people, and she just knew yeah, she was wonderful.”

Aboriginal Mum

“Even at reception, the ladies at reception are a bit rude. Yeah… the reception ladies are a bit rude.”

Aboriginal Mum

“And um it’s like you don’t know nothing. They look at me like as though I didn’t know nothing.”

Aboriginal Mum


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Many Aboriginal families have had positive experiences with mainstream services when staff members understood Aboriginal ways of working. Currently, Aboriginal advocacy is under-resourced and ad hoc. Advocacy should be independent of service providers, but work in partnership with them to raise awareness about rights, entitlements, referral options and service standards.

• Having Aboriginal specific roles and/or programs can be effective.

• Some people may identify with one worker and may expect to retain this same person as their worker.

• Describe your role in relation to how you can help the family and child. Think about the language you use.

• Clinicians should be aware that when an Aboriginal client is being examined, the client is also likely to be examining the clinician and environment. Having Aboriginal posters or art work, or Aboriginal staff members may assist in creating a more friendly environment.

• Reception staff play a key role in making a service culturally safe for Aboriginal people. Therefore, reception staff should have access to cultural awareness training. First impressions count.

Culturally safe staff and programs

“You know we need people who are passionate about Aboriginal people that respect the culture, and respect other people, you know, not just in the position because it pays well and it’s a cruisy job, and they need to be educated about how; what’s acceptable and what’s not acceptable, how they can speak to us, and how they can’t.”

Aboriginal Aunty

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Deanne Williams getting ready for the Tjina Maala Family Christmas Dinner with help from Wesley Murray and IGA, Boulder.

“Yeah, more training, more social support workers, especially for individual support you know, one-on-one basis.”

Aboriginal Mum

“More education, education, talks, funding.”

Aboriginal Mum


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Some Aboriginal families may not want to access Aboriginal specific services because of existing relationships within the Aboriginal community. Mainstream services may provide the confidentiality that they would prefer.

Confidentiality

Aboriginal Mums…

“But because they local and they know him, he don’t like people knowing his business yeah, because they’re local; to them that’s giving people that he knows to get something to talk about him”

“I won’t use [Aboriginal corporation] services, I won’t see a health worker unless it’s just for my kids and their health, because I don’t trust anyone with the confidentiality, people forget about confidentiality is in the workplace…”

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Time

Aboriginal people may have a different concept of time and a different perception of priorities to non-Aboriginal people. Personal, family or community events may become the most important commitment for a person at a particular time and might therefore take precedence over other arrangements.

• Allow extra time for appointments. This is particularly important during the initial appointment. Allow time to talk, build rapport and learn about the person’s background before trying to address clinical issues.

• Instructions such as “take medicine every five hours” may not be understood but “take one tablet when you get up, one at lunch and another with dinner” may be more likely to be followed.

• Take the time to discover the reason for any missed appointments.

• Make sure enough time is allowed to cover all topics.

Aboriginal time philosophy is tied to obligation“Aboriginal people use or treat time, according to the importance of events. In other words, if they have to go to work at 8am and something more important happens, they will do more important things and forget about work.” Of course, we can relate to this a bit… ”If a child is sick, the parent may stay home from work. But maybe the importance of events in cultural life is relevant, so that anything personal would take priority.” (Janca, 2009, cited in Adams, 2009 p.27)

Aboriginal Australians perceive time as circular“Generally most (Aboriginal) people do not see time like an arrow…that you are heading somewhere, on your way up. There is no notion like that in Aboriginal psychology and thinking. This immediately separates it from Western time in which you orient towards some end.” (Graham, 2009, cited in Adams, 2009 p.21)

Aboriginal circular time is linked to dreamtime, while western linear time is considered to be the reality. This circular time system is spiral, so that in many groups grandfather and grandson is the same word, as is past and future tense.


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•Food•Flags •Festivals

•Fashion •Holidays•Music •Performances

•Dances •Games•Arts & Crafts •Literature

•Language

Communication Styles and Rules:•facial expressions •gestures •eye contact

•personal space •touching•body language •tone of voice

•handling and displaying emotion•conversational patterns in different

social situationsNotions of:

•courtesy and manners •friendship •leadership

•cleanliness •modesty •beautyConcept of:

•self •time •past and future•fairness and justice

•roles related to age, sex, class, family, etc.

Attitudes toward:•elders •adolescents

•dependents •rule •expectations•work •authority

•cooperation vs. competition•relationships with animals

•age •sin •deathApproaches to:

•religion •courtship •marriage

•raising children•decision-making •problem-solving

Surface Culture

Deep Culture

The Cultural Iceberg

................................

.......................

The metaphor of culture as an iceberg, by Dr. Bennett, is a starting point for one of the possible metaphors of culture (including the onion, tree, atom). There is no perfect model that encompasses all aspects of culture because it is not a “thing” but a fluid process of learning and adapting. Culture is ‘the process whereby groups of people coordinate meaning and action, yielding both institutional artifacts and patterns of behaviour’. Source: http://www.afs.org/blog/icl/?p=3385

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Like many cultures, there are different considerations with gender, age and marital status.

• In some cases a male health worker with a young female is not appropriate; or a young female health worker with an older male may not be appropriate.

• Consider your dress code especially when entering the family home. In major cities like Perth, women’s dress codes are more lax; while in regional towns, short or revealing clothing may be less appropriate. In some remote Aboriginal communities, women wearing trousers may not be culturally respectful. Each community is different, don’t be afraid to ask.

• Some topics such as children and school may be viewed traditionally as ‘women’s business’, although many men (fathers, grandfathers) are involved and in many cases may be the sole carer for children.

• Avoiding eye contact is polite in some regional or remote communities. Just because a client is not looking at you doesn’t mean that they’re not listening. This is particularly relevant to cross-gender interactions. In some communities it is most often appropriate for men to

maintain eye contact with other men, and women to maintain eye contact with

other women. Take your cue from the client and respectfully mirror movements.

Contributing factors for Aboriginal families’ difficulties in using health services include (Overcoming Indigenous Disadvantage Report, 2011):

• Quality of and access to services.

• Effects of traumatic experiences.

• Family separations.

• Housing and infrastructure.

• Past prejudice and discrimination.

• Psychological factors such as sense of powerlessness over the situation.

Other cultural considerations

Aboriginal Dads…

“She [health professional] came with a short dress all the time and every time she came with a short dress and all that… nah I can’t sit down here with this happening, so I moved to another lounge chair.”

“When he needs a counsellor I prefer an Aboriginal man because talking to another Aboriginal we got the same background, we walk the same streets and talking to a white man… she [counselling service] turns around and calls me a racist and I said it’s got nothing to… it’s not your choice… we want to pick our counsellors, we pick our counsellors.”


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I feel like being an aboriginal with a disability is a tough road on both paths where I’m eternally burning to take the fight and let the world recognize the true meanings of what it is to have a disability, to be indigenous and the combination of both. My Aboriginal heritage comes from the Kamillaroi tribe and comes from the Wonnarua tribe. My Pop went through the assimilation process of the stolen generation. The hardships he went through has helped shape the mould of me as a person. Having an acquired disability of my nature of being a c-5,c-6 incomplete quadriplegic so far has been a tough road not being able to function physically how I used to and the stigmatic ignorant discrimination from people that comes with having a disability but a lot of positive motions and new doors have opened where the old ones have closed with great support from my fiancée, family, friends and work colleagues gives me positive perpetual motion to make a difference and to eradicate discrimination, ignorance and ambiguity.

JAKE BRIGGS

WONNARUA AND KAMILAROI MANCHAIRPERSON, ABORIGINAL DISABILITY NETWORK NSW

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‘SOUL DEEP’, photo by Belinda Mason

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Almost all Aboriginal families have experienced racism – sometimes passive, active or systematic racism.

• Cultural sensitivity training should be encouraged for staff working with Aboriginal families.

• Consider implementing a Reconciliation Action Plan.

• If rigid policies and procedures create barriers for Aboriginal families, change them. Work with Aboriginal families and consultants.

When Aboriginal people believe they are subjected to racism, it is more likely that their relationship with the provider will be worse. Poor rapport and relationships can affect the recall of the medication information, the adherence to recommended treatments and therefore health outcomes.

Racism

“I was just treated like every other black man… like you’re not wanted, so I still get treated that way.”

Aboriginal Dad

“I chuck Matthew [who’s white] up in front of them, it’s a black white thing, because you’re white, you’re right, you can get anything, you get all the answers. I’ve been going up to the hospital for the last week and a half, and not one of the doctors stood there and told me what’s going to go…

… because he’s white they seem to explain to him more than anyone else oh yeah.”

Aboriginal Mum and Dad

“There’s a lot of prejudism in this town, very; it reeks of prejudism in this place. They tar every black fella with the same brush.”



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“You know we don’t start with a clean slate, they see the colour of skin and immediately they just think ‘agh you’re one of them’, and you don’t get off on the right foot, so it can get quite ugly.”

Aboriginal Aunty

“Just trying to find out information about his brother who’s mentally ill, and they just give him a hard time and threaten him with security, um, my dad’s very well spoken, you know, and respectful but it’s just the colour of his skin, so they just treat him like crap.”

Aboriginal Mum

“Oh Aboriginal people are treated disgustingly, I’ve never spent much time in Kalgoorlie because of that fact, I’m just here to see my aunty because I am on a little bit of an R&R, so I’m going to spend a week here but I’ve never had anything to do with it because of the racism and the way that you’re treated in the shops and different places.”

Aboriginal Aunty

“She is a white woman, and married to my brother. She is family but she was treated well because she was white, and because she had a good education and she knew how to work the system. But me with my little education and my understanding of things, I’m starting to realise that I was from the wrong end of the stick.”

Aboriginal Dad

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Mainstream services may consider establishing Aboriginal specific programs, resources and staffing.

Things to consider when creating an Aboriginal specific role are:

• Choose a job title (program or resource title) that resonates with the community. For example, engage a Cultural Consultant, an Aboriginal Reference Group, and Aboriginal clients.

• Ensure that wage and other remuneration packages are competitive in order to attract individuals with the appropriate skills. When creating new roles, compare Job Description Forms and vacancy advertisements of similar roles.

• You may want to include Aboriginality – under section 50(d) of the Equal Opportunity Act (1984) – as highly desirable or essential depending on the service goals. There are pros and cons both to appointing an Aboriginal person and to appointing a non-Aboriginal person into an Aboriginal program. Consider what would work best for your organisation.

• During the interview process, allow Aboriginal applicants to attend with the support of a family member or friend. Ensure there is at least one Aboriginal person on the interview panel. Choose a venue and room that would make interviewees comfortable. You may consider working together with your local Aboriginal Workforce Development Centre and conduct interviews on site.

• Some applicants may need extra support. Offer assistance with completing forms, explaining plainly the application process.

The National Disability Services (NDS) Report (Aboriginal Resources and Pathways Pilot, Final Report, NDS, NSW 2010) key findings state:

• Disability services that established a reputation in the Aboriginal community found it easier to recruit Aboriginal workers than those that did not.

• Disability services that employed Aboriginal workers on average had nine more Aboriginal people accessing their services than disability services that did not.

Develop the job description with Aboriginal community-managed organisations and promote the vacancy at Aboriginal inter-agencies works best to obtain suitable candidates.

Thie NDS report also provides examples of position advertisements and the success stories.

Strategic workforce


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Recruitment can be a lengthy process. Furthermore, retention of staff can also be difficult. Here are some considerations:

• Indigenous Cultural Awareness Training is a successful strategy to enhance relatedness between non-Aboriginal and Aboriginal workers.

• Disability services found the Australian government’s Aboriginal employment programs to be complementary to their own strategies.

• Aboriginal workers reported three main causes of low retention rates of Aboriginal workers in mainstream community services:

i) Aboriginal workers feel that management prevent them from networking with Aboriginal community services, (e.g. participating in interagency meetings, visiting Elder groups and socialising with Aboriginal community members). As a result, they feel disconnected from the community development work.

ii) Some Aboriginal workers feel resentment from non-Aboriginal staff because of the perception that Aboriginal workers receive a greater level of flexibility in the workplace.

iii) There is a strong expectation from management that Aboriginal workers work exclusively with Aboriginal communities. This is not correct. This expectation leads to:

- high burn-out.

- reduced workplace satisfaction.

- limits career development opportunities.

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Governance

Reconciliation Action Plan

Develop a reconciliation plan. Visit www.reconciliation.org.au for templates and other resources that can facilitate the development of a plan.

Policy Develop policy statements such as ‘Culturally Secure Service for Aboriginal People’ that state the organisation’s commitment to Aboriginal people and culturally secure services.

Aboriginal Board Members or Board Advisory Groups

Aboriginal people could be represented on the Board and/or Advisory Groups.

Key Performance Indicators (KPI)

KPI could be adopted in regard to employing Aboriginal people or providing service reach to Aboriginal people.

Data Collection Data, and trends, regarding Aboriginal service users and employees could be collected and reported to the Board.

Partnerships Work could be undertaken in partnership with local Aboriginal Organisations.

Table 1: Recommendations for Governance

Where an Aboriginal specific role is not available or suitable, there are many ways to improve the provider-client relationship by:

• motivating providers to reduce bias.

• improving understanding of the psychological bases of any biases.

• enhancing confidence in their ability to interact with different cultures.

• assisting staff to regulate emotions.

Below is a list of suggestions that could be considered by your organisation (for full resource see ‘Working with Aboriginal People’, NDS).

Strategic workforce


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In the 1950s there was British Government and the Australian Government made an agreement to have bomb testing in Australia. Not far from here. I was only a little kid. They were working there, testing the bombs. The first one when they let it go was called Totem 1. We heard it here, loud and clear, and felt the ground shake. We seen the radiation fall out over our camp. It was moving very quietly and very deadly. After that I went blind in the right eye straight away and on the left I had some sight left.

YAMI LESTER

ELDER, YANKUNYTIJATJARA COUNTRY

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‘MARALINGA’ photo by Belinda Mason

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Aboriginal People with Disabilities – Getting Services Right, DISABILITY SERVICES COMMISION (2006)

http://bit.ly/ndsassetdoc

Aboriginal Resources and Pathways Pilot, Final Report on the National Disability Services NSW (2010)

http://bit.ly/ndspathpiolot

Aboriginal Cultural Guide, Second Edition, ACT Family Law Pathways Network (2011)

http://bit.ly/cultguide11

Australian Indigenous HealthInfoNet (2014)

http://bit.ly/indighin

Bridges out of Poverty, SOCIAL SOLUTIONS (2014)

http://bit.ly/bridgesocsol

Cultural Protocols – Aboriginal People, Western Adelaide Palliative Care, TQEH (2005)

http://bit.ly/hfpalcare

Easy English Information, SCOPE VICTORIA (2007)

http://bit.ly/easyengres

Easy English – Writing Style Guide, SCOPE VICTORIA (2007)

http://bit.ly/scenglish

Hear Our Voices, Aboriginal Empowerment, Healing and Leadership Program in the Kimberley (2012)

http://bit.ly/hovae

Indigenous Parenting Project – Main Report, SECRETARIAT OF NATIONAL ABORIGINAL AND ISLANDER CHILD CARE INC. (2004)

http://bit.ly/indparpro

Institutional Racism in Australian Healthcare, Medical Journal of Australia (2004)

http://bit.ly/iriahmj

italk Library – Disability Stories, ITALK LIBRARY (2014)

http://bit.ly/italkdisability

http://bit.ly/italkautism

NDCO Aware, Collaboration between NDCO and FPDN

http://www.ndcoaware.net/

Overcoming Indigenous Disadvantage: Key Indicators 2011, PRODUCTIVITY COMMISSION (2011)

http://bit.ly/overcomingid

Practical Considerations for Health Professionals – Working with Aboriginal Clients, Greater Green Triangle University Department of Rural Health (2014)

http://bit.ly/prachealthpro

References and resources

http://www.ndcoaware.net/


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School readiness program for Aboriginal children with additional needs: working with children, families, communities and service providers, Northcott Disability Services NSW, Social Policy Research Centre (2013)

http://bit.ly/NorthcottReport

Supporting Your Mob in a Disability Market: an Aboriginal sector development resource produced by Aboriginal Child, Family and Community Care State Secretariat, NSW (2015)

http://bit.ly/supporturmob

The Perseverance of Aboriginal Australian Time Philosophy and its Impact on Integration Into the Mainstream Labor Force, KELLY ADAMS (2009)

http://bit.ly/intergmain

Working with Aboriginal People: a resource to promote culturally responsive disability services in Western Australia, NDS

http://bit.ly/wwapresponsive

White Privilege and Male Privilege, PEGGY McINTOSH (1998)

http://bit.ly/wpmp1998

Research citationsAriotti, L. (1997). “The newly planted tree”: An exploration of Anangu perceptions of disability. Unpublished Degree of Master of Science (Primary Health Care), Flinders University, Adelaide

Ariotti, L. (1999). Social construction of Anangu disability. Australian Journal of Rural Health, 7(4), 216-222.

Brown, R. (2001). Australian Indigenous mental health. Australian and New Zealand Journal of Mental Health Nursing, 10(1), 33-41.

Gilroy, J. (2012). The Participation of Aboriginal People with Disability in Disability Services in NSW, Australia.

O’Neill, M., Kirov, E., & Thomson, N. (2004). A review of the literature on disability services for Aboriginal and Torres Strait Islander peoples. Australian Indigenous Health Bulletin, 4(4), Reviews 2. Retrieved from http://bit.ly/resourcesoneill

Senior, K. (2000). Testing the ICIDH-2 with Indigenous Australians: Results of field work in two Aboriginal communities in the Northern Territory. Australian Institute of Health and Welfare.



Notes


Other Tjina Maala Resources by Ability Centre

CENTRE

TjinaMaalaCENTRE

TjinaMaala

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Going to Hospital

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TjinaMaalaCENTRE

TjinaMaala

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Colours:85%M 100%Y100%C 5%M 14%Y 17%K

11%M 14%Y85%M 100%Y16%C 5%M 100%Y41%C 79%M 93%Y 60%K


Remembering My Family

CENTRE

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TjinaMaala

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Message BookF O R FA M I L I E SSTORIES AND SUPPOR T FOR CARERS OF PEOPLE WITH A DISABILIT Y

CENTRE Tjina

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Wall�ower

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Going to HospitalThis colouring booklet has been developed to help support Aboriginal youths living with chronic health problems and disability during their visits to hospital. The font OpenDyslexic has been used to increase readability for people with dyslexia. This resource can be used by teachers and health professionals to support Aboriginal youths in an age and culturally appropriate way.

http://bit.ly/goingtohospital

Remembering My FamilyThis colouring booklet has been developed to help support Aboriginal children and young people dealing with grief and loss. The font OpenDyslexic has been used to increase readability for people with dyslexia. This narrative will not represent all Aboriginal people as each person is unique with their own background, culture and experiences.

http://bit.ly/rememberingmyfamily

Message Book For FamiliesWe have written this book to answer some of your questions. Every person is different, each with his or her own unique strengths and particular challenges. Because each person is different, the information in this book is presented in a general way. If you have any queries about a particular person with a disability, please discuss these with a health professional.

http://bit.ly/messagebookforfamilies

‘Pika Wiya Kuthupa’ Project(Wongi for ‘Not Sick, Different One’)

Funded by the Non-Government Centre Support Scheme

Leaders in Disability.Specialists inCerebral Palsy

Lenice FormanCommunity Engagement Officer

E: [email protected]

Deanne Williams Community Engagement Officer

E: [email protected]

Tjina Maala Centre (Part of Ability Centre)Lotteries House,

42 Wilson Street, Kalgoorlie WA 6430T: (08) 9021 1333 M: 0439 596 125

Jillian Pearsall-JonesProject LeaderT: (08) 9443 0249E: [email protected]

Caris JallaProject OfficerT: (08) 9443 0294E: [email protected]

Abililty Centre 106 Bradford Street, COOLBINIA WA 6050PO Box 61, MT LAWLEY WA 6929

Message Book for Disability Services

Documents

Transcript of Message Book for Disability Services