Advocacy, Human Rights and the. Social Model of Disability: A Disabled Advocacy, Human Rights and the Social Model of Disability: A Disabled Peoples Organisation perspective on supporting PLWHA Matthew Bowden Co-Chief Executive Officer People with Disability Australia

Acknowledgement of Country We gather in Melbourne, the traditional meeting place of the Wurundjeri, Boonerwrung, Taungurong, Djajawurrung and the Wathaurung people, the original and enduring custodians of the lands that make up the Kulin Nation People with Disability Australia (PWDA) pay our respects to the traditional owners and elders past, present and future of these nations and we acknowledge that these always have been and always will be their lands

Introduction PWDA regards HIV/AIDS as a chronic health impairment that can lead to people experiencing disability – we address this through individual and systemic advocacy – our members and advocacy clients include people living with HIV/AIDS (PLWHA) PWDA works with people with disability who are in the most marginalised and segregated settings including people incarcerated in prisons, institutions, disability justice centres, juvenile detention centres and immigration detention PWDA regards people with disability as being at specific risk of HIV infection and requiring adjustments in the way that HIV information, treatments and supports are provided Introduce self – background in working with PLWHA and working around the intersection of HIV and other impairments including people with intellectual disability and HIV. Introduce PWDA – formed in 1981, a national Disabled Persons Organisation, cross-disability advocacy and human rights organisation that represents the rights of all people with disability in Australia.

Defining disability The United Nations Convention of the Rights of Persons with Disabilities (CRPD) describes ‘persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’ (Article 1) This inclusive definition of impairment/disability extends to people living with HIV/AIDS

Medical model vs social model of disability The social model contrasts with the medical model of disability. HIV is still very much situated within the medical model and this is problematic for various reasons: In the medical model of disability, ‘disability’ is a health condition dealt with by medical professionals. People with disability are thought to be different to ‘what is normal’ or abnormal ‘Disability’ is seen to be a problem of the individual. From the medical model, a person with disability is in need of being fixed or cured From this point of view, disability is a tragedy of the individual and people with disability are to be pitied The social model of disability contrasts with what is called the medical model of disability. According to the medical model of disability, ‘disability’ is a health condition dealt with by medical professionals. People with disability are thought to be different to 'what is normal'or abnormal. ‘Disability’ is seen 'to be a problem of the individual. From the medical model, a person with disability is in need of being fixed or cured. From this point of view, disability is a tragedy and people with disability are to be pitied. The medical model of disability is all about what a person cannot do and cannot be. The social model sees  ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others. A social model perspective does not deny the reality of impairment nor its impact on the individual.  However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity. The social model seeks to change society in order to accommodate people living with impairment; it does not seek to change persons with impairment to accommodate society.  It supports the view that people with disability have a right to be fully participating citizens on an equal basis with others. The social model of disability is now the internationally recognised way to view and address ‘disability’. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) marks the official paradigm shift in attitudes towards people with disability and approaches to disability concerns. People with disability are not "objects" of charity, medical treatment and social protection but "subjects" with rights, capable of claiming those rights, able to make decisions for their own lives based on their free and informed consent and be active members of society. In this context: Impairment is a medical condition that leads to disability; while Disability is the result of the interaction between people living with impairments and barriers in the physical, attitudinal, communication and social environment.  It is not the inability to walk that keeps a person from entering a building by themselves but the stairs that are inaccessible that keeps a wheelchair-user from entering that building.

Social model of disability The social model sees ‘disability’ as the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others A social model perspective does not deny the reality of impairment nor its impact on the individual.  However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity. The social model seeks to change society in order to accommodate people living with impairment; it does not seek to change persons with impairment to accommodate society.  It supports the view that people with disability have a right to be fully participating citizens on an equal basis with others. The social model of disability is now the internationally recognised way to view and address ‘disability’. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) marks the official paradigm shift in attitudes towards people with disability and approaches to disability concerns. People with disability are not "objects" of charity, medical treatment and social protection but "subjects" with rights, capable of claiming those rights, able to make decisions for their own lives based on their free and informed consent and be active members of society. In this context: Impairment is a medical condition that leads to disability; while Disability is the result of the interaction between people living with impairments and barriers in the physical, attitudinal, communication and social environment.  It is not the inability to walk that keeps a person from entering a building by themselves but the stairs that are inaccessible that keeps a wheelchair-user from entering that building.

Social model of disability A social model perspective does not deny the reality of impairment nor its impact on the individual.  However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity The social model seeks to change society in order to accommodate people living with impairment; it does not seek to change persons with impairment to accommodate society.  It supports the view that people with disability have a right to be fully participating citizens on an equal basis with others

Social model of disability The social model of disability is now the internationally recognised way to view and address ‘disability’. The CRPD marks the official paradigm shift in attitudes towards people with disability and approaches to disability concerns People with disability are not "objects" of charity, medical treatment and social protection but "subjects" with rights, capable of claiming those rights, able to make decisions for their own lives based on their free and informed consent and be active members of society

Social model of disability In this context: Impairment (HIV) is a medical condition that leads to disability; while Disability is the result of the interaction between people living with impairments and barriers in the physical, attitudinal, communication and social environment.  I.e. it is not the inability to walk that keeps a person from entering a building by themselves but the stairs that are inaccessible that keeps a wheelchair-user from entering that building. It isn’t the person’s positive HIV status that stops them from migrating to Australia it is Australia’s migration policy that prevents this

PWDA’s advocacy A social model approach to disability enables PWDA to understand the problem as outside of the person with disability and direct our advocacy towards those barriers disabling the person or group We appreciate that not all PLWHA are continually disabled or identify with the disabled community but this approach enables us to clearly address the impediments to the full exercise of PLWHA’s human rights PLWHA aren’t alone in being an impairment group who may not immediately or don’t identify as being disabled – this is common also in the deaf community and psychosocial impairments Impairments that are ‘treatable’, ‘episodic’, ‘curable’ ‘temporary’ etc are by some considered not be within the definition of disability but we do not view impairment or disability in this way It might be worth contemplating why some people are viewed as disabled and the other and themselves not included in that definition.

Applying a rights framework The disability rights movement has fought long and hard for its wins (antidiscrimination frameworks, service user protections, charters of rights etc) and these can be used to protect the rights of PLWHA Internationally CRPD is a very useful framework for understanding rights CRPD is inclusive of PLWHA and is broadly accepted – 158 countries are signatories, 147 countries have ratified and 92 have signed and 82 ratified the Optional Protocol Advocacy can be employed at the individual, community, national, regional and international levels Signing is an agreement to the convention but isn’t legally binding. Ratification means that the States Party or country becomes legally bound by the treaty or in this case the convention. The Optional Protocol allows for an individual citizen of a country that has ratified the OP to make a direct complaint to the UN CRPD Committee about their treatment/ discrimination and CRPD breach. Australia has ratified both the Convention and the OP.

PWDA’s advocacy as a DPO Systemic advocacy – Civil Society report to CRPD Committee includes advocacy around the discrimination PLWHA face when trying to migrate to Australia (mandatory HIV testing all prospective migrants and applicants for refugee and humanitarian visas – HIV positive applicants largest group who fail health requirement) Concluding observations from the CRPD Committee express concern and recommend that Australia bring its domestic legislation fully in line with CRPD Article 18 (Liberty of movement and nationality) and withdraw its interpretative declaration on Article 18 (its justification of the discrimination) – levers for our advocacy Shadow Report- Mandatory HIV Testing – page 123

PWDA’s advocacy as a DPO Training: Project to train HACC workers on HIV awareness and antidiscrimination in service delivery to PLWHA HIV prevention training projects with people with disability including those with intellectual and psychosocial impairments, people in institutions and those experiencing homelessness

PWDA’s advocacy as a DPO Individual advocacy: Support to people experiencing human rights violations including the intersectionality of HIV and other impairments, HIV and gender and HIV and Aboriginality or multiple intersectionalities Advocacy responding to HIV related hate crimes, violence, discrimination, stigma, poverty, segregation, social controls/behaviour management, incarceration, denial of housing and disability related supports

Conclusion There will be many benefits with a paradigm shift from a medical model to a social model approach to HIV The disabling responses to HIV can be addressed through implementing service user, disability and human rights frameworks, legislation and instruments Uniting with cross-disability disabled peoples organisations has many advantages – together we are stronger!

Thank you www.pwd.org.au