Nothing About Us Without Us

The axiom “Nihil de nobis, sine nobis”—“Nothing About Us Without Us”—has its origins in the politics of 16^th century Poland. And the idea lives on in Poland. Recently, university students used the slogan again when strenuously protesting against high-handed changes that the University of Warsaw imposed without consulting the students who would be seriously disadvantaged as a consequence of the changes. (Read more)

The idea that no policy should be decided without the full and direct participation of the people affected by that policy is as old as Magna Carta—at least. It was the driving idea behind the American War of Independence—no taxation without representation.

In the modern era, you don’t need to look far to find the motto “Nothing About Us Without Us” adopted by a variety of civil rights groups.

Women’s organisations and feminist organisations

Under the title “Nothing about us, without us. Everything about us, with us,” more than 200 women from around the world gathered in Lima, Peru in October 2013 for the World Conference of Indigenous Women.

They demanded greater prominence of Indigenous women at every level of decision-making and called upon governments to dedicate funding to the specific needs of Indigenous women. The delegates also used the platform as a preparatory meeting for the World Conference of Indigenous Peoples, which convened at the United Nations in New York in 2014.

Subsequently, more than 300 women’s organisations from around the globe endorsed a statement which read in part:

“We count on UN Women and member states to stand with us in ensuring our seat at the decision-making table so that we can make sure that nothing is discussed about us without us.” (Read more) 

Disability rights activists

Activists in this field, internationally, have adopted the motto enthusiastically. It encapsulates a fundamental shift towards the principle of participation as a necessary step towards the integration of persons with disabilities in every aspect of political, social, economic and cultural life.

“Nothing About Us Without Us” was the theme for the International Day of Disabled Persons in 2004. The focus was on the active involvement and participation of persons with disabilities in the planning of strategies and policies that affect their lives.

Christine Bryden’s forthcoming book promotes self-advocacy and self-reflection for people with dementia. Her message is that people with dementia should be included in discussions about the condition and how to manage and think about it. The book is to be entitled, Nothing about us, without us! 20 years of dementia advocacy (Jessica Kingsley Publishers, London, September, 2015).

People who use illegal drugs

 People who use illegal drugs suggested the title for the report, “Nothing About Us Without Us”—Greater, Meaningful Involvement of People Who Use Illegal Drugs: A Public Health, Ethical, and Human Rights Imperative, because they wanted to demonstrate that they remain largely unrepresented when decisions are made about how to respond to health and other concerns.

The Australian Injecting & Illicit Drug Users League make the point strongly:

“Most of the responses to drug related overdose, drug related crime, family breakdown, drug treatment, unemployment, etc, have been developed in isolation to people who use illicit drugs. We have been largely left out of responses to these issues because of a mistaken belief that we would be at best, disinterested, and at worst, incapable of participating in a meaningful dialogue on the issues that affect us…

“While we cannot single-handedly address the issues associated with illicit drug use in the community, our involvement in the response is critical. We are the people who use illicit drugs, access drug treatment services and educate and support our peers – we have direct knowledge and experience to offer” (International edition p. ii).

Youth advocacy groups

In 2009, the Youth Express Network, supported by the European Commission and the European Youth Foundation of the Council of Europe, ran a seminar in Scotland using the title “Nothing about us without us”. The seminar theme was participation of young people in health and risks prevention policies. The press release by Advocates for Youth was entitled: “Nothing about us without us!” (here) 

Refugees

A relatively new Australian refugee and asylum seeker welfare and advocacy organisation called RISE (Refugees, Survivors and Ex-Detainees). It is entirely governed by refugees, asylum seekers, and ex-detainees. They view those who seek assistance from RISE as ‘members’, not ‘clients’. Their motto? “Nothing about us without us” (More here)

Indigenous media

Luke Pearson’s recent article in The Guardian (3 August 2015) applies the principle to the media, ‘Nothing about us, without us. That’s why we need Indigenous-owned media’  (here) http://www.theguardian.com/commentisfree/2015/aug/03/nothing-about-us-without-us-thats-why-we-need-indigenous-owned-media

What drives the principle of “Nothing about us without us”?

To a large extent it is an expression of the politics of identity—those feeling dispossessed, oppressed, rejected, abandoned or otherwise wronged want to articulate their experience through a process of conscious-raising within the group. They do not want that experience mediated by outsiders, however well-intentioned.

The politics of identity are informed by a consciousness that the only people who can be trusted to speak up for the rights of a group are members of that group. In her 1989 book, Diane Driedger invoked the civil rights movement when writing about people with disability.

“If we have learned one thing from the civil rights movement in the US, it’s that when others speak for us, you lose.” (The Last Civil Rights Movement: Disabled Peoples’ International. New York: St. Martin’s Press 1989, p. 28)

This statement neatly captures the importance of trust. And, crucially, the assertion of agency—that is, generating and exercising to the greatest extent possible the capacity to take charge of the decisions that affect your life. As former Prime Minister Paul Keating was fond of saying: “If self-interest is running, you can back it in to win every time”.

Care Leavers or ‘Forgotten Australians’

Activists and advocates focus upon the interest of the group they represent and are wary of those who have no obvious compelling reason to advance the cause. Many people who grew up in the ‘care’ of orphanages, children’s homes and foster families—dubbed the Forgotten Australians by the Australian Senate report (2004) and the subject of inquiries such as the Victorian Parliament’s Betrayal of Trust (2013) and the Australian Royal Commission into Child Sexual Abuse (2013-17)—developed, and maintain, an enduring mistrust of all authority.

Some academics and professionals have made the ‘Forgotten Australians’—a.k.a. Care leavers, Wardies, Homies, etc.—their new business. The bandwagon is rolling with research grants; it carries ‘specialists’ to conferences in and out of the halls of the academy; and leads them to new topics for the publication of erudite papers. For some, this new business is literally an emerging opportunity for employment and promotion.

In the meantime, Care leavers travel third-class. Some professionals and academics treat Care leavers as clients to be serviced or passive subjects to be surveyed, interviewed, focus-grouped and power-pointed. Their childhood files can be plundered as a treasure trove of victims’ tragedies. The atmosphere in the air is full of condescension. As children ‘these people’ (as they are sometimes referred to) were objects of charity. As adults they are now expected to answer a new generation of questions, but without the courtesy of reciprocity—Care leavers who ask questions or demand participation are regarded as inconvenient.

I hasten to say there are honorable exceptions among professionals and academics who do show respect for, and a willingness to work with, Care leavers or Forgotten Australians on a more equal basis. Here and there, historians, social workers, archivists and Care leavers have started to collaborate to produce more balanced and sensitive discourses in child and family welfare. These narratives combine research skills, analytical powers and lived experience from diverse perspectives. Some of this work is beginning to make its way into the mainstream literature (examples below) or is reflected in inter-disciplinary symposia, where Care leavers participate on an equal footing.

Examples of collaborative works

Ashton, Paul and Wilson, Jacqueline Z. (eds.) (2014). Silent System: Forgotten Australians and the Institutionalisation of Women and Children, North Melbourne: Australian Scholarly Publishing).

Golding, F., O’Neill, C. & Story, N. (2013) ‘Improving Access to Victoria’s Historical Child Welfare Records’, Provenance, on-line Journal of the Public Records Office of Victoria, no. 12.

Horrocks, C. & Goddard, J. (2004) ‘Adults who Grew Up in Care’, Child & Family Social Work 11, no. 3, 264-72.

O’Neill, C., Selakovic, V. & Tropea, R. (2012) ‘Access to Records for People who were in Out-of-Home Care’, Archives and Manuscripts 40, no. 1, 29-41.

Sköld, Johanna & Swain, Shurlee (eds.) (2015) Apologies and the Legacy of Abuse of Children in ‘Care’: International Perspectives, London: Palgrave Macmillan.

Swain, S., Sheedy, L. & O’Neill, C. (2012) ‘Responding to “Forgotten Australians”‘, Journal of Australian Studies 36, no. 1, 17-28.