We are happy to host this guest post from noted disability activist, author, consultant, and blogger Donna Thomson.
A stranger asks, “What do you do?”. They really mean, ‘do you WORK?’. When you reply that you care for a loved one, they look past your shoulder, scanning the room for an escape route. At the grocery store, someone you used to know walks by, averting their eyes. Conversations with people apart from other caregivers can be difficult and sometimes hurtful.
I am a caregiver who has never had a ‘proper’ job since Nicholas was born twenty-five years ago. I have certain sensitivities and sometimes, I take a chilly greeting personally. During the years when Nicholas was constantly in hospital and often in crisis, I would say this to the doctors: “I really need you to be nice to me. I mean it.” I did not know any other way to express the fact that a small slight, a critical gaze, or an unkind word could shatter what bit of resilience I had left to get through the day.
Eva Kittay recognises this chink in the armor of caregivers because she is one herself (when she is not teaching moral philosophy at SUNY Stony Brook). Eva describes the phenomenon of the ‘transparent self’ of the caregiver – “a self through whom the needs of another are discerned, a self that, when it looks to gauge its own needs, sees first the needs of another”. Kittay argues that the moral requirements of a dependency relationship make the transparent self indispensable. This labor of love is simultaneously responsive to the needs of others, exhibiting care – it cultivates intimacies and trust between humans. Both care and concern contribute to the sustainability and connectedness fundamental in dependency relationships, but it leaves the caregiver vulnerable. Prolonged transparency of the self can lead to clinical depression at the worst and the absence of empowerment to act on one’s own behalf at the least.
My clumsy response to being too transparent for too long was to beg those around to ‘be nice to me’.
Looking a caregiver straight in the eye with real interest (not sympathy) is tonic to the caregiver soul. Asking her (or his) opinion about a shared experience, even if it’s what she thinks about the color of the sky – demonstrates a respect for that part of the person which is not a caregiver.
“What do you do?” is a question that most caregivers despise. Somehow caring for a person you love doesn’t stack up alongside occupations like doctor, lawyer or even office manager. New mothers on maternity leave from high powered jobs very often complain that work comrades avoid them or don’t include them in professional banter. For long-term caregivers, respectful, authentic and engaging conversation is hard to come by. So, if you happen to overhear someone say “I just need you to be nice to me”, make eye contact, elicit a few opinions and share a personal reflection. And by all means, don’t ask “What do you do? Do you work?”
About Donna Thomson:
Donna Thomson is a noted disability activist, author, consultant, and blogger. In 1988 when her son Nicholas was born with severe disabilities, Donna left her career as an actor, director, and teacher, to become his full-time caregiver. Through her book, The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving, and her blog, The Caregivers Living Room, Donna tackles the principles and economics of giving and receiving care as well as discussing the impact that people with disabilities have on our society. Donna Currently Resides in Ottawa, Canada, with her husband and two children.