Why we need to talk about the “Disability Sector”
On Language and Inclusion: Why we need to talk about the “Disability Sector”
The language we use is influenced by what we know (or think we know) but it also influences how we think. Psychologists use the term “frames” to describe that the way that we think and the language we use influences our beliefs and our behaviours.
Independent Living Movement Ireland recognises that language is a very powerful and evocative tool. Therefore, in all our documentation and our discussions we always use the term “disabled people” to reflect the values of equality and empowerment which at the core of this organisation. The term ‘disabled people’ comes from a specific view of disability developed by disabled activists called “the social model” of disability.
The social model looks at how society is structured and how it disables people. It isn’t based on a person’s impairment, it is about what barriers that exist in terms of attitudes, policy development, access or lack of supports that prevent people from participating in society as equals, with choice and control over their own lives. In this model it is society that disables people from achieving their hopes and dreams, not a person’s impairment.
The social model informs all aspects of the work of ILMI. As a campaigning, national representative organisation that promotes the philosophy of independent living we are working to build an inclusive society. Central to the way we work is to ensure that policy decisions that impact on the lives of disabled people have to be directly influenced by those whose lives are directly affected.ILMI’s work is to develop policies and campaigns based on disabled people’s lived experiences in order to remove barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives. Barriers are not just physical. Attitudes found in society, based on prejudice or stereotypes (also called disablism), also disable people from having equal opportunities to be part of society. Disabled people developed the social model of disability because the traditional medical model did not explain their personal experience of disability or help to develop more inclusive ways of living. The social model of disability informs key International Conventions such as the UN Convention of the Rights of People with Disabilities (UNCRPD) and is in contrast to the “medical / charity model” of disability.
The medical / charity model individualises disability and promotes the idea that people are disabled by their impairments or differences. The medical model always focuses on people’s impairments from a medical perspective. In some ways it still looks at what is ‘wrong’ with the person and not what the person needs. It creates low expectations and leads to people losing independence, choice and control in their own lives. The medical / charity model never recognises the rights of disabled people and assumes that disabled people need to be “looked after” or “cared for”. The medical / charity model has professionals make decisions for disabled people. People informed by the medical / charity model, being focused on disabled people’s impairments, use the term “people with disabilities”.
While it might seem trivial, using the term “people with disability” again reaffirms a model that is not based on rights or changing society to make it more inclusive. Many people do this unwittingly, but until we can as a Movement become clear on why language matters, we can inadvertently reaffirm the very model or view of disability that we are trying to work collectively to challenge and change.One of the best examples of how a frame influences how people think is the use of the term “the disability sector”. Many, many people use that in discussions about policy, resources and discussions with politicians. How does using the term the “disability sector” become a shorthand for talking about disabled people? About disabled people’s rights, about participation of disabled people in their communities, about how to build an inclusive, equal society?
If we look at other campaigns to promote equality, human rights and inclusion, other groups use language that is clear and frames their approach. No one working to promote greater gender equality uses the term “the women’s sector”, they are clear in talking about gender equality, feminism and women’s human rights. If we look at Traveller groups or anti-racism organisations, they don’t use terms like “the Traveller sector” or “the anti-racism sector”. They use language that is clear and talks about challenging inequality and discrimination, promoting people’s rights and how to build a society based on values of equality, participation and inclusion.
In fact, the only time anyone talks about “sectors” almost always relates to industry: the “tourism sector”, “the manufacturing sector” or the “agricultural sector”. That in itself is instructive. Are disabled people being spoken about when politicians and media commentators talk about the “disability sector”? No, they are talking about money being invested into organisations which are not controlled or led by disabled people.
So if we are clear as a Movement that has a vision of an Ireland where disabled persons have freedom, choice and control over all aspects of their lives and can fully participate in an inclusive society as equals then we need to use language that reflects that struggle. The “disability sector” is not about disabled people’s lives and the need to challenge structural inequality. If the “disability sector” is to be spoken about we need to be clear as a Movement that it represents organisations that provide services, often vital services, to disabled people, but that they do not in any way represent or speak on behalf of disabled people.
This is why we need to ensure that we continue to use the language of Universal Human Rights, Equality and Inclusion. We need to be clear about who represents our voice and why ILMI as a DPO (Disabled Person’s Organisation) is different, why that matters and why we need to talk about what representation means. And we need to talk to our politicians and policy makers about what that means and why it matters. It is putting into practice “nothing about us without us”.
Independent Living Movement Ireland