Cross-cultural learning: An Australian Malaysian partnership in

disability research

Associate Professor Dr LING How Kee Director, Centre of Excellence for Disability Studies, University Malaysia Sarawak, Kota Samarahan, Sarawak, Malaysia. Dr Donna MCDONALD Senior Lecturer, Convenor, Disability Studies School of Human Services and Social Work Griffith University, Queensland, Australia

Compare and contrast . . .

Malaysian and Australian disability histories:

• Differences in each country’s historical, sociopolitical and economic systems and economic environments;

• Their impacts on policy responses to disability, disability rights and disabled people’s movements;

• Similarities in the urban/rural divide in health services in Malaysia and Australia

• Both Malaysia and Australia need culturally diverse approaches to disability: both have multicultural societies and remote Indigenous communities.

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Cross cultural research aims . . .

• to get a better understanding of the similarities and differences in the Malaysian-Australian responses to disability,

and

• to improve our understanding of each other's broader cultures.

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For this workshop, we hope to …

• facilitate further discussion on Asian and Pacific responses to disability

• continue our cultural exchange of experiences

• identify potential joint disability research and policy projects of reciprocal benefit to each other’s country and to the region.

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Malaysia: A country of diversity

• People from different ethnicity, cultures, and religions.

• Located in Southeast Asia, comprises 2 regions, Peninsula Malaysia and Sabah and Sarawak located in the Borneo Island.

• Population of 28.25 million people (www.statistics.gov.my) - Malays, Chinese, Indian, the indigenous groups Iban, Bidayuh & some 26 other groups in Sarawak, the Kadazan-Dusuns & Bajaus and many other smaller groups in Sabah.

• In Peninsula Malaysia, indigenous groups in smaller number collectively referred to as Orang Asli.

Rural-Urban Divide, Different stages of ‘development’

Twin tower – capital city Kuala Lumpur

Remote interior of Sarawak where health care comes in the form of flying doctor services

Diversity reflected in Diverse experiences of disability in Malaysia

Disabilities conceptualized and understood differently

• Who is a disabled person?

• Who (has the power to) define who is disabled?

- follow official definition of disability stated in government policy?

- or disability in the Persons with Disabilities Act (2008)?

Disabilities in Malaysia

• Following global trend of changing the term

Handicapped (cacat) (80s)

• Disabled Persons/Persons with Disability (persons come first) (Orang Kurang Upaya)(90s)

• recently Persons with Different Abilities

(Orang Kelainan Upaya).

Legal and official definitions • Persons with Disabilities Act

2008, Malaysia “…disability is an evolving

concept….”(Preamble) The preamble of the Convention

of the Rights of People with Disabilities 2006(CRPD)

• ‘Persons with disabilities’ include those who have long term physical, mental, intellectual or sensory impairment which in interaction with various barriers may hinders their full and effective participation in society

But how long is long term – not specified.

Social Welfare Department: New categories of PwDs Passed in Parliament on 27

May 2009; Enforce on January 2010

• 1. Visually Impaired • 2. Hearing Impaired • 3. Physically Disabled • 4. Learning Disabilities • 5. Speech Impairment • 6. Mental Disabilities • 7. Multiple Disabilities

Cultural Meanings of Disabilities

Cultural meanings of impairment

• ‘cacat’ (in Malay / Iban)

• chan chiek’残疾人in Chinese

• implied diseased ‘spoilt/broken and lacking’ in Chinese

The meanings of disability varied and diverse

‘ This child is a God’s gift’ (Malay families)

‘Could this be bad feng shui ?’

‘May be something I did wrong in my past lives (Chinese families) (Ling, 2007)

This person is handicapped because her parents had broken certain taboo when her mother is pregnant with her. It is a curse!

(Iban villagers/Terence Mamba, 2010)

‘This is God’s testing for me’ (both Muslim and Christian/Chan, 2011)

•

However, much heterogeneity ;different religions, rural urban backgrounds within and across different groups; Need to be careful about generalisation

Disability History…

From charity • Historically, social services for disabled people in Malaysia

were started by Christian Missionaries in the early 20th Century.

• Provision of residential care based on charity and good will (Kuno, 2007).

• 1940-1960, a charity model : setting up of institutional care services for different groups of people with disabilities.

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To self-help & self advocacy

• 1960-1980 : the emergence of disabled person’s self-help organizations spearheaded by visually impaired people in urban Kuala Lumpur in Peninsula Malaysia.

• 1964 The first Society of the Blind in Malaysia

• 1976 Society of the Orthopedically Disabled

• 1977 Society of Chinese Disabled Person, Malaysia

• 1987 Society of the hearing Impaired

• 1991 Dignity and Services (PWLD learning disabilities) Now United Voice (self advocacy by PWLD) (Kuno, 2007; Jayasooria, 2000).

• A token consultation process between government policy makers and PWDs. Disable activist such as Godfrey Ooi, who is visually impaired, has been one of the key spokespersons for people with disabilities in all major dialogues with Government officials.

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Disability rights movement in Malaysia…

Or is there one?

• 1991 a watershed in the development of disabled rights movement in Malaysia.

• Anthony Thanasayan, a physical disabled person led the peaceful protest over the reluctance of the management of the Light Rail Transport System to provide the necessary facilities for wheelchair-users.

• A social model of disability – that it is the society which disabled disabled people.

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Voices against exclusion

• “… the disabled have been excluded from the general development of the country from the construction of the public roads, building and school, to access to supermarkets, public transports and recreational parks, the special needs of the disabled have not been catered for.

• This is due to lack of consultation with the disabled to ascertain their views and need”.

Disabled activist, Kim (1991, cited in Jayasoorian 2000:77)

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Policy and Legislation

• Extension of the Asian Pacific Decade of Disabled Persons (2003 to 2012)

• Adoption of Biwako Millennium Framework for Action in Malaysia. The UNESCAP Biwako Millennium Framework for Action (2003) Proposes policies that governments in the Asian and Pacific regions create barrier-free societies that recognize the rights of PwDs

• Discussion of Millennium Development Goals (MDGs) and the targets relevant to people with disabilities.

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Person with Disabilities Act 2008 (Act 685)

• FINALLY passed in the Parliament on 18th December 2007.

• Modeled on the Convention on the Rights of Persons with Disabilities (CRPD) adopted by United Nations in 2006.

• Under the Act, persons with disabilities shall have equal access to the following:

Public facilities, amenities, services and buildings;

public transport;

education;

employment;

information, communication and technology;

cultural life; recreation, leisure and sport.

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More Lobbying …

• 5 years on… the Act has met much criticism and has been compared to as a ‘toothless tiger’

• the disabled community continued to be ‘imprisoned’ as they are still discriminated and their rights and needs continued to be relegated to the margin (Saari & Mui, 2008)

• 19 July 2010 Malaysia ratified the United Nation Convention on the Rights of Person with Disabilities (CRPD) after constant pressure and lobbying by Disabled Persons Organisations (Wong, 2011).

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• The Persons with Disabilities Working Group (PWDWG) of the Bar Council Human Rights Committee (BCHRC) spearheaded Gerakan Bersama Kebangkitan OKU (BANGKIT) 2012.

• BANGKIT 2012 submitted a Memorandum to the Human Rights Commission of Malaysia (SUHAKAM).

• Concurrently, PWDWG organised a series of forum that served as a platform for persons with disabilities organisations to voice their grievances and hopes for the future.

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Disability rights or ‘wrongs’?

• A human rights advocate was once asked where do human rights begin. She answered: ‘Human rights begin in small places; They begin in shops, in factories and across the kitchen table whenever people talk about right and wrong and justice.

• Disability rights and awareness will be judged by whether it can reach those small places and bring about meaningful change(Nagasi Osamu, 2010).

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Some research experiences…

Parents’ perspective:

When describing their experiences and struggles to get

their children to schools either in special school or integrated settings.

“I am a firm believer in rights; however the perspective of fellow parents is frustrating, because the concept of rights is almost absence in their language. Parents are more comfortable with supporting and facilitating their children become a peaceful member of the groups (school community), and live in harmony with them, instead of demanding school to meet their rights by providing accommodation and adjustment. Parents continued to view that the responsibility to “adjust” to the schools’ community is on them instead of requesting the community to change for them”

(A parent who heads an organisation of PWLD)

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A disability worker’s perspective

• ‘A rights based approach is not always effective in ensuring the individual with disabilities get access to social life, employment, social participation, and others.

We find that an approach of appealing to the goodwill of the potential employers go further than one which directly demand rights’

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Disability research & Disability Studies in Malaysia

• Disability Studies in Malaysia is very much in its infancy, and lag behind Gender Studies and Development studies.

• Until recently, research related to disability has been more related to issues of rehabilitation and education.

• This reflects the challenges faced by disability rights movement in being able to take roots in Malaysia.

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Australia: a big country of extremes

In the outback

In the city: Brisbane

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Australia: an ancient country with a complex history

First Australians: oldest living culture in the world European settlement: 1788

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Australian disability history: invisible

• Australia’s disability history appears to be dominated by extermination, exploitation, and exclusion.

• Australians with disability were shut out of public debate and public life for more than a century.

• Only since the final quarter of the twentieth century have Australians with disability been gradually admitted to a mainstream society.

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Colonial imperialism & disability

• People with disabilities had no place within the harsh colonial conditions.

• The racist, patriarchal system inherited from England justified the imprisonment of people with mental illness (“lunatics”) and people with intellectual disability (“idiots”).

• Physical infrastructure was limited, and so people with disabilities were initially housed on the hulks (ships which had made the long voyage out from England but were no longer sea-worthy).

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For over a century, Australians with disability were seen to lack worth, were “invalid”, and defective.

They had little opportunity to contribute to the growing economy or to influence the political directions of the emerging nation.

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An Emerging Nation On 1 January 1901, the Commonwealth of Australia was set up with a new Constitution.

BUT

People with disabilities continued to be ignored and devalued, with the widespread embrace of the international Eugenics Movement of the 1930s in Australia.

People judged to have “unsound mind” were not allowed to vote, and people with disability were categorised as either “educatable” or “non educatable”.

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The Great War: “heroes of war”

• The public profile of disability began to change with the return of soldiers from the Great War (1914-1918).

• 156, 000 Australian soldiers were wounded, gassed or taken prisoner, and had physical and emotional disabilities.

• Some short and long term hospice care was provided by the government, but the care of these veterans was largely left to their families.

• Limited income support was offered.

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The polio epidemics The public profile of disability increased again when the major polio epidemics of the late 1930s, early 1940s and the 1950s in Australia resulted in a dramatic rise in the disability population—some 40,000 Australians are estimated to have developed paralytic polio. Medical institutions grew as a primary source of care.

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After the 2nd World War of 1939-45 • Hundreds of thousands more injured war veterans

returned home.

• Alternatives to institutions were sought with a focus on vocational and financial initiatives.

• The Commonwealth Rehabilitation Service (CRS) was founded in 1948 to assist injured men and women from the armed forces as well as people receiving Invalid pensions (introduced in Australia through the Invalid and Old-Age Pensions Act 1908 to relieve pressure on families and charities).

• Australia began to embrace human rights as advocated by the United Nation’s Universal Declaration of Human Rights 1948 during this post-war period.

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1950s & sheltered workshops

• Sheltered workshops were established in Australia as a transition from special education facilities to employment for young people with disabilities.

• These workshops provided a closed employment setting exclusively for people with disabilities who were paid minimal wages in exchange.

• Many continue to operate today.

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1960s: The rise of rights movements

• The Black Civil Rights Movement took off in America, and greatly influenced the struggles of Indigenous Australians.

• The Australian Women’s Liberation Movement and Indigenous Rights Movements began to take root in Australia, winning economic gains, political victories and raising public consciousness around their issues.

• However, Australians with disabilities continued to have a limited political or social influence.

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1970s: a time of reform in Australia

• In 1972, after 23 years of a Liberal-Country coalition government, Australians elected a Labor government led by Prime Minister Gough Whitlam with an ambitious program of social, economic and cultural reform.

• Many “minority” groups benefited from his massive legislative and policy reform agenda. Pa

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Major disability policy milestone

• Henderson Report on the Commission of Inquiry into Poverty (1975) linked disability and poverty.

• Resulted in significant legislative reform such as the introduction of the Handicapped Persons Assistance Act 1974 (Cwlth).

• Other changes in delivery of services to people with a disability and their families such as the shift from “sheltered workshops” to “supported employment.”

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1981: IYDP

• The United Nations’ International Year of Disabled Persons in 1981 resulted in the move towards de-institutionalisation in Australia when the public became more aware of the rights of people with disability.

• The Australian Government grasped the United Nations themes of: • “full participation”

• “access of handicapped people to all aspects of community life”

• “the prevention of disabilities and handicaps” (Cho, 1980, p.10).

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From disability history to ‘rights’

• Most public disability rights protests in Australia are individualised, small-scale and under-reported in the mainstream media.

• Genni Batterham’s documentary film, “Pins and Needles” (1980) features one such rare protest in 1979 at the opening of the new – but inaccessible - Eastern Suburbs Railway by the then New South Wales Premier, Neville Wran.

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1980s: Rise of Australian disability rights movement

In the 1980s and early 1990s—some twenty years after the rise of the independent living and community-based movements in North America and Europe—Australians finally saw the rise of the disability rights movement:

• closure of large, congregate care institutions housing people with disability, and

• their movement into preferred community-based living arrangements.

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1980s: a ‘high’ for disability rights in Australia Considerable disability policy reform, eg:

• review of the Handicapped Persons Assistance Act 1974;

• Commonwealth Disability Services Act 1986 establishment of the Human Rights Commission in 1986, and

• Guardianship Tribunals in each Australian state to safeguard the interests of people with impaired decision making capacity.

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1990s-2000s: New problems

Instead of liberating people with disabilities into the broader Australian society, economy and culture, community based service provision continued to congregate, segregate and isolate people with disability: • hopelessly-supported mass exodus of people with

disabilities from large institutions into community based services,

• lack of choice and involvement in meaningful decision-making,

• Social services struggled with the volume of people and depth of their need for housing and support.

• promotion of group care.

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Australia in the 21st Century: The Coming of Age for Disability Rights? In late 2008, the Australian Government released a discussion paper inviting the community to describe their lived experience of disability.

In 2011, Productivity Commission’s 18-month Inquiry into the Care and Support of People with Disabilities was released.

• Found an underfunded, inequitable, fragmented, and inefficient system emerged as driving the experience of disability.

• Attracted significant national media, academic, advocacy and industry attention.

• Led to national campaigns such as Every Australian Counts, a popular social media campaign demanding the introduction of a National Disability Insurance Scheme.

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2013: DisabilityCare Australia

DCA is a “national” disability funding scheme based on separate agreements between the Commonwealth Government and each State and Territory.

BUT, some States – Queensland and Western Australia – are refusing to sign up.

So . . . there is still much more to do in Australia to ensure the rights and quality of life for people

with disability.

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Disability history & rights: some discussion points • What do we know about Australian, Asian or Pacific

cultures' responses to issues about, and rights for, people with disabilities?’

• What are the similarities and differences in the ways disabilities are experienced in your context/culture compared to what was presented?

• Is the concept of rights well understood among the disabled community in your country?

• Do your communities have a unanimous view of disability?

• Is there a rural/urban divide in the provision of disability support and services?

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Acknowledgements

• How Kee Ling would like to acknowledge the support of Universiti Malaysia

Sarawak for the ‘Special Research Grant’ to research project Disability Studies in Malaysia: Issues, Challenges and Future Direction. The discussion in this paper is a based on a part of the study.

• Thanks also to Faizah Mas’ud for reading and giving constructive comments on the paper.

• Donna McDonald would like to acknowledge the support of Griffith University in funding her participation in the 2013 Pacific Rim International Conference on Disability and Diversity.

• Donna McDonald researched and wrote her contribution to this paper with the

assistance of Rachel Carling-Jenkins, Research Fellow, Living with Disability, School of Allied Health, LaTrobe University (Australia), and Courtney Wright, a PhD scholar at the Griffith Health Institute, Griffith University (Australia), as a contributing book chapter on disability history to be edited by Associate Professor Roy Hanes, School of Social Work, Carleton University, Canada.

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References for Disability Rights Movement in Malaysia • ASEAN CHARTER (2007). Charter of the Association of Southeast Asian • Nations, 1-39. • BANGKIT (2012). Memorandum OKU Bangkit 2012. Accessed on 19 March from

http://www.malaysianbar.org.my/index.php?option=com_docman&task=doc_view&gid=3655 • ESCAP (2002) Review of national level progress in the implementation of the Agenda • for Action for the Asian and Pacific Decade of Disabled Persons, 1993-2002, prepared for

presentation at the High level Intergovernmental Meeting to Conclude the Asian and Pacific Decade of Disabled Persons, 1993-2002, held at Otsu, Shiga, Japan 25-28 October 2002.

• Disabled Peoples’ International Asia-Pacific (DPIAP), (2010): Term of Reference: ASEAN Disability Forum, 1-8.

• Denison Jayasooria (2000), Disabled People: Citizenship and Social Work, The Malaysian Experiences, United Kingdom: ASEAN.

• Jabatan Kebajikan Masyarakat (2009), Buletin PDK; Program Pemulihan dalam Komuniti, Edisi Tahunan 2009, Kuala Lumpur: Jabatan Pembangunan Orang Kurang Upaya.

• Goodley, D (2011), Global Disability Studies, London: Sage. • Kenji Kuno 2007, Community Based Rehabilitation: Does Community Based Rehabilitation Really

Work? Community Based Rehabilitation (CBR) and Participation of Disabled People, Kuala Lumpur. Institut Sosial Malaysia, Kementerian Pembangunan Wanita, Keluarga dan Masyarakat.

• Nagasi Osamu 2010, Disability & Development with reference to Biwako Millennium Framework for Action and CRPD, Paper presented at Conference Perspective on Inclusive Development: Embracing Diversity and Creating Disability Sensitive Communities, Kuching, Sarawak, Malaysia, 28 -29 July 2010.

• Person with Disabilities Act 2008 (Act 685 Malaysia) • Wong Nam Sang (2011). Review on Suhakam and rights of person with disabilities in • 10 years, Southeast Asia Human Rights Watch. Accessed on 19th March 2013 from:

http://www.seahrw.org/v1/index.php?option=com_content&view=article&id=55:review-on-suhakam-and-rights-of-person-with-disabilities-in-10-years&catid=39:malaysia&Itemid=67

References for Disability Rights in Australia

Adams, P. (1998, Nov 7). ‘The Battle of Hastings’. The Australian. Cited in an unpublished, undated paper by Christopher Newell. Batterham, G. (1980). Pins and Needles [Documentary]. Chobocky, B. (Director): Australian Film Commission (Producer). Sydney, Australia. Carling-Jenkins, R. (2007). Footprints, wheel tracks, and stirrings of a movement: positioning people with a disability and the Disability Rights Movement within Australia (Unpublished doctoral dissertation). James Cook University: Queensland, Australia. Cho, K. (1980). 1981 International Year of Disabled Persons. Melbourne, Australia: Royal Melbourne Institute of Technology. Clear, M. (Ed.). (2000). Promises, Promises: disability and terms of inclusion. Sydney, NSW: Federation Press. Clemens, E., & Hughes, M. (2002). Recovering past protest: Historical research on social movements. In B. Klandermans & S. Staggenborg (Eds.), Methods of social movement research (pp. 201 - 230). Minneapolis: University of Minneapolis Press. Crossley, R., & McDonald, A. (1985) Annie’s Coming Out. Victoria, Australia: Penguin Books Australia. CRS Australia. (2006). How CRS Australia Began. Retrieved from http://www.crsrehab.gov.au Henderson, R. F. (1975). Poverty in Australia: Australian Government Commission of Inquiry into Poverty [Volume 1]. Canberra, Australia: Australian Government Publishing Service. Hume, J. (1980, April 7-11). ‘An Angry Woman Speaks Out’. Quad Wrangle. •

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References cont’d King, A. (2000). From institutionalisation to community: How far have we come? Journal of Leisurability, 27(1), 1-9. Goggin, G., & Newell, C. (2005). Disability in Australia: Exposing a Social Apartheid. Sydney, Australia: UNSW Press. National People with Disabilities and Carer Council. (2009). Shut out: The experience of people with disabilities and their families in Australia. National Disability Strategy Consultation Report. Australia: Commonwealth of Australia. Quick, P. (2005). Disability Specific Services: Barriers to Social Justice? Retrieved from www.aasw.asn.au/adobe/papers/paper_pam_quick.pdf Richardson, J. (1995). Foreword. In R. B. Scotton, & C. R. Macdonald (Eds.), Medibank Sources: unpublished documents relating to the establishment of national health insurance in Australia. Australia: Centre for Health Program Evaluation. State Records NSW. (2006). Archives Investigator: Agency Detail. State Records NSW. Retrieved February 6, 2006, from http://investigator.records.nsw.gov.au/Details/Agency_Detail Summers, A. (1975). Damned Whores and God’s Police: The Colonization of Women in Australia. Victoria, Australia: Penguin Books Australia. Young, L., & Ashman, A. F. (2004). Deinstitutionalisation in Australia Part I: Historical perspective. The British Journal of Developmental Disabilities, 50(Part 1, 58), 21-28.

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