Learning empathy from my CMT experiences is an active choice
Living with a disability doesn't automatically make us kinder people
Written by |
Because of my Charcot-Marie-Tooth disease (CMT), I’ve sat with more neurologists, researchers, orthotists, and physical therapists than many of my peers. I’ve also had to self-advocate when navigating the healthcare system in ways few of my able-bodied peers need to. And I’m familiar with the sense of isolation that disabilities and chronic conditions often bring.
When I wear my ankle-foot orthoses with shorts, there’s a decent chance I’ll catch odd glances from folks who think they’re sneakier than they are. I’ve received odd comments here and there about my gait, as well as unsolicited healthcare advice from strangers. I’m aware that some people feel they should play the role of a good Samaritan or an inspired recipient of enlightenment in the presence of someone disabled. And I, of course, am intimately familiar with my own CMT symptoms — the burdens, pains, and everyday struggles.
I know I’m not alone. Such experiences and feelings are common among many CMTers and members of the broader disability community. These shared experiences unite us and play a central role in advocacy movements.
However, I’ve often wondered: Do these shared experiences make disabled people more empathetic and caring? I’ve certainly heard some people suggest as much.
And yet, I don’t know if I’m bold enough to make such a broad declaration. In fact, I wonder if it would border on dehumanization. People don’t automatically become saints when confronted with disability. Those with health conditions are as capable of great evils and great kindness as anyone else.
Living with a disability or chronic condition can make us more aware of different life challenges, priming us to recognize the profound impact that empathy and care can have. However, the onus is still on each of us to embody the values and take the actions that we know can help build a more accessible and loving world.
I hope I can learn, in time, to take advantage of the teachable moments CMT presents me — to keep my heart tender, and to choose kindness, compassion, balance, and peace whenever possible.
Doing so isn’t a guarantee that I will always be right. I know this is neither a path to enlightenment nor a guarantee that others will view my actions charitably. Still, I actively choose to respond this way to my experiences with disability because I believe it is fulfilling and spiritually enriching.
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
Anneke van der Werff
Wat een krachtig verhaal over o.a empathie.