9 posts tagged “wheelchair”

From “What happened to you?” to “You’re so inspirational”: 5 ways Anne navigates stigma as a wheelchair user

Posted July 31st, 2017 by

Member Anne Thomas (AnneBT), a civil rights attorney turned professional storyteller, has shared her stories with everyone from elementary schoolers and medical students to corporate leaders and World Bank officials. Anne sustained a spinal cord injury in a car accident at age 18. Her wheelchair is often the first thing people notice about her, so she’s had to find quick and clever ways to navigate stigma. We asked her to share some common questions and comments she faces and how she handles them (hint: humor helps).

stigma as a wheelchair user

In Anne’s own words…

Stigma around disabilities and chronic illness abound in our culture. People often have no idea of the unconscious bias they communicate through their questions or reactions. As someone who has lived with a disability and chronic illness for over 40 years, I’ve seen it all. In the deep discomfort of the 1970s, people would ignore me and talk to the person I’m with (as if I’m not there) or ask me questions to satisfy their curiosity: “What’s wrong with you?”

I’ve also enjoyed the more sophisticated post–Americans with Disabilities Act culture, where people now understand the emphasis is on the person – not the health issue – and have stopped asking rude and intrusive questions of people they don’t know.

Throughout the years, I’ve kept my cool because I feel like I am an ambassador from the disabled and health community and I don’t want to fulfill any stereotypes of the bitter cripple. Instead, I’ve always used humor to amuse myself and help others see the absurd assumptions inherent in their questions.

Here are my top 5 stigma moments and some ways I’ve responded or reacted:

  1. Eyes wide with disbelief, people say to me, “You live alone? Have a job? Drive a car?”

My reply: “Why, yes. I’m a regular superhero!” I calmly dive into the nearest phone booth to do my activities of daily living.

  1. Staring at me – looking a bit dismayed – strangers ask, “What’s wrong with you? What happened? How long ago was it? Was it your fault?”

So I might dodge their obvious curiosity and declare my flaws: “Well, I tend to procrastinate and I peel my finger nails.” Or offer even more perspective, like: “Before I answer your questions, will you tell me about the worst thing that ever happened to you? What did that feel like? Was it your fault?”

  1. Eyes wide with shock, people exclaim, “You were married?”

When they learn that I divorced, they always want to know, “Were you disabled before you got married?” (Yes.) “Well then, he knew what he was getting himself into.” (Like I’m some kind of ‘situation’ that would justify divorce if I’d been able-bodied when we married.) I’m thinking, “So much for the vow of ‘in sickness and in health.’”

  1. The doctor raises his head, looking surprised at my technical answer to his question and asks, “Did you attend med school or grow up in a medical family?”

Me: “Nope.” (I have just learned to use medical vocabulary to ensure my doctor respects me, knows I’m intelligent and treats me like an equal partner in making decisions about my body.) I am passionate about having the best, fullest life I can – and that means my health has to be stable. I want to know everything I need to know to take exquisite care of my body.

  1. And the big granddaddy of social stigmas… “You’re amazing. So inspirational!”

My reaction: “Just for living my life?!” Living with health challenges is not the worst thing that can happen. People cope with all kinds of hardship every day. Some are about health, others are about loss or violence, poverty or abandonment.

Everybody has something – or many things – to overcome in life. People managing chronic illness, disease or disability are no different than the rest of the population. We’re just trying to get through life the best way we can, and a good sense of humor definitely helps!

What sort of stigma have you faced? Join the community to share any anecdotes or tips for managing stereotypes and unwanted comments.

Share this post on Twitter and help spread the word.

Coping with Changes in Physical Appearance

Posted January 24th, 2013 by

When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions.  But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience.  For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes?  Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention?  Most importantly, what can you do to still feel beautiful?

A cute hat can help to cover thinning hair or bald spots.  Image courtesy of Stock Free Images.

Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues:

  • Using attractive scarves or hats to cover thinning hair or bald spots
  • Experimenting with different cosmetics to see what works best
  • Treating yourself to a spa manicure and pedicure as a pick-me-up
  • Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses
  • Soaking in a scented Epsom salt bath to ease pain and relax
  • Consulting with a hair stylist about better styles for thinning hair
  • Using gentle, non-drying facial cleansers and lotions
  • Switching to an electric razor to improve ease and safety
  • Donating your hair to Locks of Love to put a feel-good spin on it

Have you discovered other tricks to help you deal with a changing appearance?  Join this ongoing discussion in our forum or share your experiences in the comments section.