Lilith Black*, 37, feels forgotten by disability support providers, and does not get that support she was promoting as a poster child for a large Victorian disability organisation. She tells me wistfully that she was treated like a rockstar as a child, but now sometimes has to miss out on seeing her favourite rockstars because of unreliable support workers and a lack of income.Lilith has Cerebral Palsy, uses a wheelchair and her speech is affected by her disability. She relies on support workers to shower her, cook for her and take her out. If her support worker doesn’t make their shift, Lilith struggles with accessibility. And last week she had to wait for more than six hours to go to the toilet. “It is a day-to-day exercise in begging and it feels like I need to justify every basic need. I fight hard for privacy, dignity and choices in my lifestyle. And people expect me to look normal.”
She was their poster child – used to tug at donors’ heartstrings – a representation of where their funds were going to. But the funds have been significantly reduced over time, and she’s not leading the independent life she was promised or promoted. Lilith believes disabled peoples’ involvement in charities can be damaging. “It severely disempowers people with disabilities, by framing them as both helpless and- hopeless individuals”, she said. “They are trying to evoke sympathy and blind compassion in the donating public and I think this is wrong.”The charity model of disability can be attributed to Lilith’s lack of independence as an adult, and the need for her to perform like a monkey for fundraising as a child. The charity model of disability suggests that the needy should be helped.
However, advocates believe that this model portrays people with disabilities as a tragedy, for non-disabled people to take pity on to feel better about themselves. Disability Planet, a UK-based advocacy organisation believes many disability charities are focused on fixing medical conditions, rather than enabling independence. The organisation also believes charities “reinforce negative stereotypes of disabled people, particularly through advertising and marketing”.A 1992 article in New Philopsopher uncovers the business of disability charity advertising.”Charity advertising sells fear, while its commercial equivalent sells desire. Charities promote a brand not to buy, but to buy your distance from.”
And this ideology supports the image of despair, need, overcoming, and sometimes confronting aspects of disability that charities use in their campaigns. While Cannes praises advertising companies for inspiration porn, The Gammy Awards highlights the problem with disability charity advertising.
The Gammy Awards website states “Charity ads depict people with disability as victims of circumstance, tragic figures who are deserving of pity. Its often the most common way people without disability learn to define and explain disability. Traditionally used by charities in the competitive business of fund-raising, the application of the Tragedy/Charity Model is graphically illustrated in many Australian television and radio advertisements. Whilst such appeals raise considerable funds for services and equipment which are not provided by the state, many people with disability find the negative victim-image thoroughly offensive.”
Lilith told me the disability organisation no longer needed her when she went to a mainstream school aged 10. It appears it’s not uncommon for disability organisations to no longer need disabled people to represent them when they get “better”.
Merritt is in her mid 40s and lives with the severe skin condition Ichthyosis. She found some skincare products that worked for her in the mid 1990s – changing the appearance and texture of her skin. She realised just how much her skin improved at a dermatology conference she attended in 2000 when she met others with Ichthyosis. Merrit was was presented as a “success story”. She said patients and parents saw “there is a possibility of improvement with time and perseverance.”
Merritt told me that managing her condition with topical retinoids has meant she no longer feels valued by a charity supporting Ichthyosis patients and families. Merritt’s skin has significantly improved since childhood, and now the charity that helped her as a young woman no longer wants her to share her success story with others, despite her advice helping younger patients. “It’s not like I’m the poster child for Ichthyosis anymore. No one will fund research to find a cure if your skin appears normal”, Merritt laments. She is very disappointed, especially given the support she received from them, and the donations her family made.
The Gammy Awards team doesn’t believe all charities are detrimental – they are fundamental to supporting our most vulnerable. But they believe charities need to move from the charity model of disability, to empower disabled people. “We do need to educate charity managers and professionals to review the way they operate and ensure that funds are channeled to promote the empowerment of people with disability and their full integration into our society as equal citizens – requiring our respect and not our pity”, the Gammy Awards’ website states.
The Australian Council for International Development’s (ACFID) code of conduct is helping the charity sector move in this direction, expecting its signatories to respectfully portray people in their campaign material. ACFID’s code states “Signatory organisations will ensure that the use of images and messages portraying women and men, boys and girls in their communications respects the dignity, values, history, religion and culture of the people portrayed.” Signatories of the ACFID code are obliged to depict “images and messages of women and men, boys and girls…in a dignified, respectful manner, portraying them as equal partners in the development process.”
Charity campaigns that are consented to and allow collaboration with people with disability are empowering. Todd Winther, a Youngcare resident, takes control of how he is portrayed in the charity’s campaigns. 31 year old Todd has Cerebral Palsy and has lived in Brisbane’s Youngcare facility for two and a half years. He’s doing a pHD in politics, works part time as a political journalist, and enjoys seeing live music – which he can do more of now he lives in Brisbane. Todd told me: “Youngcare has provided me with supported accommodation that allows me to live independently and autonomously: a very rare occurrence for someone with a severe physical impairment like mine.”
*Lilith Black is a pseudonym. Name has been changed on request.