Enable columnist Samantha Renke on the importance of dignity and respect when it comes to bodily autonomy
I have been thinking a lot about my body recently – more specifically, my bodily autonomy.
Bodily autonomy is a fancy way of saying that my body is my own. I have complete power and agency over it. Bodily autonomy is a human right yet, as a Disabled woman, I often feel like my autonomy wavers.
Born with brittle bone condition, the sporadic nature of bone fractures leaves me feeling like my body has a mind of its own. Seldom in the driving seat, I’m just a passenger, struggling to put my seatbelt on, hanging on for dear life and hoping for the best.
DISABLING WORLD
As a manual wheelchair user in a disabling world, this often means others need to push me. I have to hand over my autonomy, trusting that my ‘driver’ has my best interests at heart.
Over the years, I’ve learned to regain my autonomy in these moments by speaking up – telling people how it feels to have someone push my chair, and what works for me and what doesn’t. I also take self-care days and have talking therapy, plus my powerchair means I need less hands-on support.
One area I’m still working on though is bodily autonomy in a medical setting. I recently had leg surgery; a procedure that should’ve happened a few years ago, but I didn’t see eye-to-eye with my then consultant. Were they bad at their job? Absolutely not, but that doesn’t mean they know what’s best for me and my body.
Healthcare professionals are remarkable humans, but we know our bodies best. This can often be forgotten, and Disabled people can lose autonomy in this infantilising infrastructure.
SHOP AROUND
Patient / doctor relations should always take a holistic approach. And I didn’t feel heard or respected, so
I shopped around. I contacted my old specialist and moved hospitals. This took time and paperwork – I appreciate that not everyone has that privilege.
Once I was being seen by a different specialist, I continued to speak up. I challenged in-person appointments that could easily be done over the phone. This meant less time and money spent, and also that I didn’t feel rushed.
The procedure had to respect my own circumstances and not follow the tired narrative that sees Disabled and chronically ill people as individuals with nothing better to do than to wait around for operations.
We have rich, vibrant lives that need to be as undisturbed as possible. We need to feel safe and secure in aftercare and support. We also need our voices to be heard and to have our dignity upheld.