“People With Disabiliy Must Be Seen as Experts In Their Own Lives’

When it comes to people with disability, it is an unfortunate fact that “ableism” still thrives within our Society, even though we have seen the most social revolution of our generation- the introduction of the National Disability Insurance Scheme (NDIS).

Even though the NDIS promised “Choice and Control” to its’ Participants, it has not become a magical cure for society’s woes, when it comes to people with disabilities. There are still instances where children with disabilities are not welcomed within our schools, the voices of people with intellectual disabilities still go unheard within the healthcare system and the unemployment rate of people with disabilities remains appallingly low.

Many people with disabilities have little say over their lives and live below the poverty line.

While many people with disabilities are seen to be involved in many governance groups, including advisory boards, committees of Disability Service Providers, are involved in local councils , giving a voice to State/ Government initiatives or are involved in research projects for people with lived experience of disability, the question remains: Is the lived experience of people with disability really valued?

Sometimes the involvement of people witth disabilities within governance groups could be described as “tokenistic”. That is, a person with a disability is only a member of a governance group, because it is mandated within the group’s rule, or it makes the group look good.

Those of us with lived experience are shifted over there, while the ‘real’ experts are central to the ‘real’ discussion. We are crowded out by those who purport to have expertise about our lives, our experiences, the barriers we face, with little acknowledgement of the harm this causes. This means the people without any of this expertise can have cover not to examine or look at the space they are taking up, the power they are holding.

Unlike most others in the board room, who are paid for their time and expertise, people with disabilities are expected to “volunteer” their “expertise and time and in most cases they’re the ones who have the most at stake-how is this fair?

All this, of course, is about power. For disabled people, we bang on about the importance of being in the room, at the table, leading organisations and discussions about us for very good reasons. Disabled people need to have the power to make changes for our community, to act on the priorities of the people we represent, and to be held accountable by that community.

Sometimes the concept of codesign is confused with consultation. While “consultation” is a conversation with people with disabilities, that’s all it is a ‘conversation, people with disabilities telling the Government what they think of a particular service or program and the Government goes off to design or implement it.

Codesign is when the Government goes into partnership with people with disabililties to design a particular service or program, thus, people with disabilities are involved at all stages of the design and implementation process of a service or program.

Consultations with people with disabilities means designing services for people with disabilities, while codesign means designing services with them.

Disabled people in the 1980s and 1990s used the now common phrase ‘Nothing about us, without us’ to signify that disabled people needed to be the ones making decisions about us, at every level. Too many organisations for disabled people were run by non-disabled people, leading to the famous walk out from the Rehabilitation International conference in 1980 in protest, and the formation of Disabled Peoples International.

Many of these fights for disability rights by different groups of disabled people were about this right to decide for ourselves about what happens to us, to be in charge, to be in control. To have control of the levers of power when decisions are made about us.

Including disabled people isn’t because you are nice, or to tick a box. Including us means better decisions will be made because non-disabled people will never understand or know about our lives. But more than that, as long as we are expected to be bystanders, while you, the non-disabled experts, go about the work, there will be no shifts and no changes.

Disabled people, and other marginalised people, are not here for token inclusion because that will never bring us real change for our community. If you are making decisions for marginalised people, and you are not a member of that community, it is time to take a step back. You don’t have the expertise to do the job.

Reference: El Gibbs, Blog- October 20, 2022, “Lived Expertise Means Experts"