Sarah Korte, Ira Patole, Holly Haoyi Zhang
The Caregivers Network is an initiative for students who provide substantial informal care-giving support to friends or family members who are disabled. If you’d like to get involved in activism, social events, Disability Inclusion Week, and more, get in touch!
Love and solidarity,
the 2021 Office Bearers
Margot Beavon-Collin and Sarah Korte
The UNCRPD definition above was designed with reference to the social model of disability, which emerged in contrast to the medical model of disability. The medical model of disability states that people are disabled because their bodies diverge from an accepted norm. The social model of disability states that people are disabled because society does not accommodate their bodies. For example, under the social model of disability, a wheelchair user is disabled by inaccessible environment rather than by limited physical mobility.
The World Health Organisation writes that:
Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.
Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.
The social model isn’t always a perfect model for interpreting disability, but it is a useful starting point. It’s also important to remember that lots of people who have impairments do not identify as disabled. For example, Deaf people often do not consider themselves to be disabled, but rather consider themselves to be a community defined by culture and language.
20% of people living in Australia are disabled. This figure is higher in marginalised communities, due to factors such as lack of access to healthcare, socioeconomic conditions, minority stress, and intergenerational trauma. In Aboriginal and Torres Strait Islander communities the figure is 50%. LGBTIAQ+ people also experience disproportionate levels of disability.
Many disabled activists use identity first language (“disabled person”), rather than person first language (“person with a disability”), as a matter of identity pride and as a way of invoking the social model of disability. Some communities have a strong preference towards one or the other, for example, Autistic people overwhelmingly prefer to be referred to as an “Autistic person” rather than a “person with autism”, whereas people with intellectual disabilities overwhelmingly prefer to be referred to as just that. For the most part the disability sector (i.e. healthcare and disability services) uses person first language. Phrases such as “differently abled”, “handicapped/handicapable”, and “special needs” are generally advised against.
Who is a caregiver?
Caregivers, or carers, are people who provide substantial informal (unpaid) caregiving support to family members or friends who have a disability, mental illness, chronic illness, terminal illness, alcohol or drug addiction, or who require aged care support. Caregiving support can include physical and personal care and assistance; organisational support such as help making appointments or managing medication; and financial, social, and emotional support.
12% of people living in Australia are informal caregivers. Many caregivers are also disabled; often disabled and elderly people provide caregiving support to each other. Caregivers are also disproportionately likely to experience mental illness.
Currently the system does not provide adequate healthcare or aged care support for disabled or elderly people, which means that the decision to provide caregiving support to friends or relatives is rarely made freely, but rather out of necessity. Not every person who needs caregiving support has someone in their lives willing (or able) to provide that support. Capitalism shifts the responsibility of caring for our communities onto individuals. This puts a great deal of stress on informal caregivers, many of whom are women and/or young people.
You can find a list of supportive resources for caregivers here.
What is ableism?
Ableism is a term used to refer to the sociocultural marginalisation of disabled people. It includes any kind of discrimination and prejudice directed towards people with disabilities. For example, it is a function of ableism that 45% of disabled people in Australia live near or below the poverty line, more than double the OECD average. The National Disability Consultation Strategy report Shut Out: The Experiences of People with Disabilities and their Families in Australia outlines the systemic disadvantages experienced by disabled people in Australia.
“Ableism” is not a recent term, and has been used since 1981, replacing the earlier term “handicapism”. Some people use the term “disableism”.
What is disability justice?
Working towards disability justice and liberation means supporting disabled people to live full and equal lives to everyone else in society. It means recognising that disabled lives are worth living, and that our lives and bodies are not inferior or less important to the lives and bodies of abled people. It means: nothing about us without us! And: no body left behind!
All bodies are unique and essential. All bodies are whole. All bodies have strengths and needs that must be met. We are powerful not despite the complexities of our bodies, but because of them. We move together, with no body left behind. This is disability justice.
Some examples of disability justice activism include:
- De-institutionalisation (devolution)
- Accessibility in physical environment and in communication and interaction (e.g. Auslan interpretation, wheelchair accessible spaces, fragrance-free spaces, accessible transport)
- Independent living strategies (including access to mobility aids and attendant care)
- Equal access to education and employment
- Freedom from abuse and neglect (in medicolegal, familial, interpersonal, workplace, and intimate partner contexts)
- Fair wages for disabled workers/opposition to sheltered workshops
- Equal marriage rights, and the right to have and raise children
- Working to dismantle the criminalisation of disabled people, especially black disabled people and people who experience psychosis
- Working to dismantle ableist language and societal prejudice around disability
- Working to dismantle ableism in the media, including inspiration porn
- Supporting disabled actors being employed to play disabled characters/opposition to disability mimicry
- Working to dismantle white supremacy, colonialism, capitalism, sexism, heterosexism, cissexism, intersexism, antisemitism, Islamophobia, and other marginalising structures that intersect with ableism
USyd Disability Services
Disability Services is the main point of contact for accessing disability accommodations during your study. Some of the accommodations they can arrange include:
- assessment and exam adjustments, including extra time, smaller exam rooms, use of a computer
- timetable adjustments, including making sure that your lectures are close together, close to bus stops, or held in buildings that are wheelchair accessible or have hearing loop equipment
- alternative formatting
- access to assistive technology
- lecture support
- library services
Contact Disability Services:
Phone: +61 2 8627 5067
Fax: + 61 2 8627 8482
Address: Level 5 Jane Foss Russell Building G02 (lift access)
Opening hours: 9am to 4.30pm Mon-Fri
Your rights as a disabled student
The Disability Discrimination Act (1992) and the Disability Standards for Education (2005) enshrine in law the right of disabled students to access education and training “on the same basis” as non-disabled students. You have the right to:
- use an assistive device or mobility aid
- be accompanied by a carer, interpreter, reader, or assistant
- be accompanied by a guide or hearing dog or other trained assistant animal
- access reasonable adjustments for lectures, tutorials, and assessments so that you are not disadvantaged by your disability
- access lecture materials in a format that you can understand
- seek redress for abuse or harassment on the basis of disability
Unfortunately, many people are unaware of the DDA, and violations of the DDA are difficult to prosecute. Unlike other anti-discrimination legislation, the DDA has a clause for “unjustifiable hardship”, meaning that people and companies can be given an exception to discriminate in cases where not discriminating would result in “unjustifiable hardship”, such as high expense. Heritage-listed buildings are not exempt from the law, but heritage listing may be taken as supporting evidence for an argument of unjustifiable hardship.
If you experience ableist discrimination at the University of Sydney, you may find it useful to consult with the SRC legal service, which provides students with free legal advice, representation in court where relevant, and a referral service.
SRC Legal Service contact details
Call the SRC Legal Service to make a booking at 02 9660 5222.
If you have a hearing or speech impairment, you can call them via the National Relay Service: https://relayservice.gov.au/
Level 1, Wentworth Building (G01), Darlington/Camperdown campus. No appointment required. Tuesdays & Thursdays, 1pm–3pm
NOTE: The SRC is located down a flight of stairs and may be difficult for students with mobility issues to access. If you prefer a face to face appointment you may be able to use a (narrow) back entrance via the loading dock, or they may be able to book a meeting space in another venue. Alternatively they can arrange contact via telephone or Skype.
Other useful links and resources
Sydney access maps – sydneyforall.com/AccessMaps.html
Master Locksmiths Access Key (MLAK) – masterlocksmiths.com.au/mlak.php
The National Public Toilet Map – toiletmap.gov.au/
Accessible event checklist – and.org.au/pages/event-checklist.html
Centre for Universal Design Australia – universaldesignaustralia.net.au/
The Web Content Accessibility Guidelines (WCAG) 2.0 – w3.org/TR/WCAG20/
Easy English guide – scopeaust.org.au/service/accessible-information/
Dragon speech recognition software – australia.nuance.com/dragon/index.htm
JAWS (Job Access With Speech) screenreader – freedomscientific.com/Products/Blindness/JAWS
NVDA, a free open source screenreader – nvaccess.org/
Downloadable disability access symbols – graphicartistsguild.org/tools_resources/downloadable-disability-access-symbols
The Accessible Icon Project – accessibleicon.org/
Translating, captioning, interpreting
The National Relay Service – relayservice.gov.au/
Translation and Interpreter Service – tisnational.gov.au/
Auslan Signbank – auslan.org.au/dictionary/
CADET (Caption And Description Editing Tool) – a free, downloadable caption-authoring software – http://ncamftp.wgbh.org/cadet/
Audio description services:
Centrelink and the NDIS
National Disability Insurance Scheme (NDIS) – ndis.gov.au/
The Disability Support Pension – humanservices.gov.au/individuals/services/centrelink/disability-support-pension
Australian disability legislation
Commonwealth Disability Services Standards (Eligible Service Standards) (FAHCSIA) Determination 2010 – comlaw.gov.au/Details/F2010L00847
Disability and Human Rights – wwda.org.au/humright.htm
Disability Discrimination Act (DDA) 1992 – austlii.edu.au/au/legis/cth/consol_act/dda1992264/
Disability Services Act 1986 (Commonwealth) – austlii.edu.au/au/legis/cth/num_act/dsa1986213/
Disability Services Act 1993 (NSW) – austlii.edu.au/au/legis/nsw/consol_act/dsa1993213/
Guide to the Disability Discrimination Act (DDA) 1992 – humanrights.gov.au/disability_rights/dda_guide/dda_guide.htm
NSW Disability Services Standards 2007 – austlii.edu.au/au/legis/nsw/consol_act/dsa1993213/
NT Disability Services Standards – health.nt.gov.au/Aged_and_Disability/Publications/index.aspx
QLD Disability Services Standards – http://tiny.cc/df3i2
SA Disability Services Standards – http://www.dcsi.sa.gov.au/services/disability-sa/disability-sa-policies-and-guidelines
TAS Disability Services Standards – http://www.dhhs.tas.gov.au/service_information/disability/disability_services
UN Convention on the Rights of Persons with Disabilities (CRPD) – un.org/disabilities/default.asp?id=150
UN Convention on the Rights of Persons with Disabilities (CRPD) – Plain English ratifynow.org/un-convention/crpd-in-plain-language/
VIC Disability Services Standards – dhs.vic.gov.au/ds/kci/