I co-wrote an article for HireUp, with Lisa Grech, who is a disabled mother of a disabled child. The article is a letter exchange, debating who should be centred in articles about disability issues.
It was an interesting way to make a Twitter debate to more nuanced and respectful. I stand by my beliefs that disabled people should be centred in stories about disability.
From me: “For too long stories about disability have been told by non-disabled people. These stories are often tragic, pitiful, inspiration porn, littered with disability euphemisms and over-sharing. They often express grief and regret, which not only harm the disabled subjects of the media and art but also the wider disability community. However, I am seeing more and more non-disabled parents look to disabled adults (and young people) as mentors, to help them understand and shift the narrative to centre disabled people, including their children. It’s heartening, because their disabled children will become disabled adults, and are a part of the disability community.”
From Lisa: “For us, then, the experience of the person with a disability and the parent is shared. It is a different experience to parents of children, including those with disabilities, who gain greater capacity and independence with age. I don’t think there is another person with a disability who is a better representative of my daughter’s experience than me. “Nothing about us without us” is true of the parent-child experience for people with severe intellectual or behavioural disabilities. My situation isn’t unique, it is common to the many parents who are dedicated to their children with severe disabilities, who love and gain immense joy (and experience many challenges) from their parental role.”
I’ve written on this topic before – specifically about parents over-sharing about their child’s disability. Read that article on the Sydney Morning Herald website.