Lesbian Couple Together Indoors Concept

I’ve spent the past decade and a half feeling afraid of where I might end up living when I get older and need more care than my chosen family can provide. These fears first took root when I was a graduate student in my mid-twenties researching home care (supports and services intended to help people remain in the community where they live). My research opened my eyes to a system of home- and facility-based care that left me disillusioned and frustrated by how it persistently devalues the work of caregivers and gives care recipients—predominantly older adults, many of whom are disabled and chronically ill, and younger disabled people—the bare minimum of care.

It’s a system reliant on gendered, hetero- and cisnormative assumptions about family members filling the gaps in care it can’t provide. The more I learned, the more vulnerable I felt as a queer person without siblings, adult children or other close biological family members.

Although I was studying other people’s experiences, I came away from my graduate research convinced I would someday be left to the mercy of a system not set up to meet my needs, let alone honour my desires as a queer person.

Read more in Xtra.

This is an external article from our library

Everyone is talking about caregiving, but it can still be difficult to find meaningful information and real stories that go deep. We read (and listen to and watch and look at) the best content about caregiving and bring you a curated selection.

Have a great story about care work? Use our contact form to submit it to us so we can share it with the community!

Related Articles

manic pixie dream world

manic pixie dream world

Rayne: Eliza, do you consider yourself mentally ill? Eliza: Rayne, at one time, I would have said I am extremely mentally ill. I no longer say that....

Popular categories

After Caregiving
Finding Meaning
Finding Support

Don't see what you're looking for? Search the library

Share your thoughts

1 Comment

  1. I’m so happy to see a post like this! Caregivers are absolutely devalued and society does not discuss the amount of work it takes to be a caregiver. Caregiving is a life changing event and most of us will experience it at some point in our lives.

    This is a topic that I feel extremely passionate about and having worked with caregivers over the past year, I’ve encountered so many caregivers who are feeling truly overwhelmed.

    I’d like to take an opportunity to invite any caregivers to those with dementia to participate in a study me and my lab at UC, Berkeley are recruiting for testing in-home assistive technology. This study uses aims to reduce the stress of caregivers and increase the safety of persons with dementia by using in-home monitoring sensors. The study is funded by the NIH and is completely free to participate. If you’d like to learn more, please visit our site at https://research.presencefamily.com/


Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.