I’ve always wondered what life would have been like if I had been raised as Deaf rather than mainstreamed with occasional accommodations for my “hearing loss” that were often more an afterthought than an actual accommodation.
More recently, as I’ve struggled so much with my health getting the right label has been of the utmost importance. Without a label at all, everything was a great deal harder. “Breathing difficulties’ sounds so innocuous.
Unfortunately what seems to be the right label, that of Reactive Airways Dysfunction Syndrome (RADS) and Hypersensitivity seem to be very much misunderstood.
However, knowing that that is what’s wrong with me personally has allowed me to push myself in respiratory rehab. much more than I would have done before I knew for sure. Until we’d ruled out a lot of other possibilities I was always scared to do much of anything just in case I made anything worse.
Fighting to breathe for over 6 months before gaining any relief was hard enough. I wasn’t willing to do anything that could make that come back or get any worse. I was already past the point at which I should have been hospitalised months ago. Thankfully, I did get relief with the help of an outstanding speech language pathologist and the continued support of my medical team of specialists and my GP.
However, today I read the best description I’ve ever read on why, as a disabled person, being labelled matters to me.
I don’t know if it’s true for all disabled people, but for some of we often do identify by our disability rather than as a person with a disability. I’m not a woman who happens to be deaf. I am a deaf woman. Being deaf permeates every aspect of my life. It is core to my identity.
So like “Candidly Autistic” I’m proud to be a penguin. I might be a different kind of penguin than “Candidly Autistic” but there is relief in no longer trying to be a sparrow.