Disabled people are not always the experts

It has been a general statement of the ‘disability movement’ for many years that people with impairments are automatically the experts in the issues that affects them. This has seen the rise of user-led organisations who are seen as the ‘preferred supplier’ by the local and national governments regarding being the voice of ‘disabled people’.

This statement goes mostly unchallenged but is it always true? It is true that someone who has had a specific impairment for some years is most likely to have a lot of knowledge about that impairment and how it affects them, but it may not apply regarding people with newly acquired impairments. They are likely to be still coming to terms with the physical and emotional effects of their condition, learning how to effectively manage their impairment on a daily basis on top of the standard grieving process they may be experiencing in a manner unique to them.

But impairment, the biological effects, is only half the story as impairment often creates disability in terms of social barriers, discrimination, and prejudices. While most people with impairments who experience disability will understand the concept in terms of how it affects them, disability is a very complex subject once you start exploring it properly.

Now I openly admit as a brash young 20-something I bluffed my way into the disability consultancy and training fields as someone prepared to learn along the way. Over the next two decades, I explored the issues thoroughly to become the undoubted expert I am now. My expertise comes from the ability to listen to individual circumstances and only make judgments as an opinion when I feel I have all the evidence in front of me, avoiding as far as possible, sweeping statements. I am really not interested in the politics but the facts, and how a difficult situation could be made easier.

I am not saying everyone has to be as qualified as myself to have an educated opinion, quite the opposite. I would like to suggest that in terms of making judgments based on evidence and facts, people with or without impairments with other expertises can make a contribution to discussions, and should be able to comfortably challenge people with impairments on their viewpoint in the spirit of coproduction. And here we have the current problem.

For a whole range of reasons I have discussed often, we have entered a period of distrust between people with impairments and professionals, particularly in terms of being ‘fit for work.’ Here, the experts rhetoric has been adopted by people with impairments, including those with newly acquired impairments, to fiercely oppose the Work Capacity Assessment. This has created a battleground where there should be engagement, where all the parties have contributed to the mess that has been created.

People with any impairment can not be automatically assumed to know everything about what they are capable of doing as we often do not know until we have tried. I have always believed in trying everything at least once, especially leisure activities, to see how capable I am as well as how much I enjoy doing it. No impairment or any other label can be a prerequisite to determining individual capability now or in the future, and it does not help when the media often reinforces the experts rhetoric.

I am not suggesting people with impairments are always wrong or indeed lying, as they are likely to be expressing what they believe to be their capacity at that moment. But this does not mean that others, including people without impairments, can make effective challenges to assist them in exploring their capabilities in new ways.

But these personal challenges need to be conducted within a platform of co-production, which the current assessments are not, to be acceptable to those being challenged to explore what is possible, especially if it supported by new information and understanding. It also requires everyone involved to be always willing to learn and take points onboard.

No one should assume the experts role, especially when it comes to discussing individuals, and everyone involved should be willing to learn from each other.