One of the ways mainstream media talks about things is in binaries. People are either book readers or they read nothing at all, for example. Women are either sluts or they aren’t having any sex at all.
People are either caregivers or they have disabilities and thus are cared for.
Or so I keep hearing.
So, when we talk about needs relating to children with disabilities, somehow the idea that there may be parents with disabilities who are primary caretakers for these children is missed. When we talk about caring for elderly or disabled parents or extended family members, we don’t talk about how to do that if you are also disabled. Because people with disabilities are cared for, right? You can’t be both cared for and caring for someone, right? Right?
Right now, I’m getting a lot of literature sent my way about “caring for” a spouse with Cancer. That literature will often include the information given by Family Caregiver Network Society: “We understand the common feelings of isolation, helplessness, exhaustion, stress, anger and guilt faced by family caregivers.”
All of that is often true for caregivers. But for some of us, that stuff is unrelated to being a caregiver because it comes from our status as people with disabilities in the first place.
I think this feeds into the ideas of disabled people as passive receptors of whatever, who never act on their own, who can’t act on their own, and whose only stories are those of being a burden. These perceptions feed into how and what support is given to families affected by disabilities that have long-term caring needs, what accommodations are made for meetings with caregivers (I was invited to a meeting in a space that isn’t wheelchair accessible, for example), and basically how society views everything to do with being disabled. Suddenly, your whole life is perceived as a burden to others, with nothing to live for and nothing to look forward to.
I know there are readers of this blog who are disabled and care for others, either in their homes or workplaces. I want to talk about how we are both disabled and carers. 1
- ETA: It is not my intention to imply that if you are not both/and in this case, you are somehow a burden or not worth talking about, or ruining it somehow for everyone else. I am just focusing this particular discussion on that bit of intersectionality. ↩