Lived experience is important — and lived experience is not transferable

It’s also important to remember that lived experience of one disability or advocacy space does not necessarily signal expertise in another. A 21-year-old male athlete who had a spinal cord injury while practising a sport and a 50-year-old culturally Deaf woman recently diagnosed with an autoimmune disorder, for example, will have very different lived experiences of disability. And both of them will have experiences different from those of someone like me, who has been in a wheelchair all her life or those of someone with severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). And I haven’t even mentioned psychiatric disabilities yet!

 
Yes, there is definitely cross-disability solidarity — at least sometimes — but don’t assume an advocate for one group has any idea what they are talking about when it comes to another, especially when they are making a direct comparison between them (such as “You wouldn’t blame someone in a wheelchair for not being able to walk.” I assure you, some people would. And they do. Routinely.)

Relatedly, there is no one single disability movement. You can, in fact, interview disabled people who aren’t part of any activist movement at all. Like the majority of the population, the majority of disabled people are not activists or even advocates.

There is no one single experience of disability or representative disabled voice. There are different goals and priorities, depending on a person’s disability (or disabilities), privilege and position in and about disability-related circles.

 
An example is the coverage of the treatment of people using mobility devices on airplanes (see also Framing). Such devices are routinely lost and damaged in ways that can lead to injury and even death. When this has happened, people were told to crawl off the plane when staff weren’t available to get them off safely. This led to a public outcry and the summit held in Ottawa by the federal government.

While this is a real problem that deserves time and attention, it’s generally only more-affluent people who are able to take trips on airplanes; the vast majority of disabled people in Canada live in poverty and would not be able to afford airline tickets even if they could get on the plane. As Gabrielle Peters pointed out, the fact that the media spent a lot of time covering this topic and that the federal Liberal government wanted to signal it was a top concern — while failing to implement the Canada Disability Benefit in any meaningful way — is a telling indication of priorities and the sources who were accessed by journalists.
Considering again a disability lens, people generally cannot afford plane tickets or repairs to their wheelchairs when they are unable to eat or have to choose between medication or rent, or when they are considering assisted dying because there is no place for them to live. As journalists, we need to make sure we’re looking for sources from different socio-economic backgrounds and with different levels of ability and types of disability, because that will influence the lived experiences and priorities of sources. And a varied picture of disability priorities will make our coverage better and more skeptical.