4 posts tagged “guest post”

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.

Attending Partnering with Patients…as a Patient

Posted March 14th, 2013 by

Last Friday we heard from PatientsLikeMe Head of Community Liz Morgan about her experiences at the Institute of Medicine’s Partnering with Patients workshop.  Today we hear from multiple sclerosis (MS) patient Laura Phillips, a PatientsLikeMe member who spoke at the event. 

As a speaker at the workshop, Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Director, invited me to speak for the patients of PatientsLikeMe as her co-presenter.

IOM Workshop - LadyMac

I had everything worked out to exactly what I wanted to say and right in front of me so I wouldn’t forget, but I couldn’t tell you what I even said. LOL.  I know I didn’t want to look down and read, it needed to come from the heart and what I could remember.  I thought I’d freeze and not be able to say a word, but after introducing myself I felt really comfortable with looking at the audience and speaking.  Even with Liz Morgan, Head of Community at PatientsLikeMe, taking pictures, I was able to talk.

There was a large, diverse group of people attending and presenting. I wish I could do a better job of portraying the event, but it was large. Healthcare, patients and families were the subjects of the workshop. Lots of ideas were put forth on everything from how to improve the healthcare system to how to make patient records available to the patients electronically, such as recording doctor visits and putting them on a CD for the patient to keep and play for other family or friends who were not at the appointment.

Recording doctor visits is something I’d love to see. How many times have you left the doctor’s office and each person present remembers the visit differently? Or you can’t remember if you discussed a particular test or not?  I did push the importance of the patient keeping hard copies of ALL tests, doctors’ notes, you name it, get a copy.  I would love to see the ability of viewing my records electronically so I could view my results quicker, make notes to ask the doctor, etc. There was also talk of submitting questions for the doctor in advance for the doctor to review and be more prepared for the visit. Also, the staff would print a copy of your submitted questions so you would have it in hand and remember what to talk about.

There was way too much to compress into a brief review of the event, but there were a lot of really good, logical ideas presented.  How many of the things discussed will eventually become a reality? Only time will tell. Privacy will be a major roadblock I fear.  Everyone that I heard talk did agree that collecting data from the patients themselves was important, and PatientsLikeMe was mentioned more than once by others there.

IOM Workshop - Sally and LadyMac Closer

Sally and Liz were a delight to meet and spend time with, as we are all passionate about PatientsLikeMe and how it has helped many of us through the years.   Really had a great time, and I wish I could have spent more time with Sally and Liz, but the time we did spend talking was productive and invaluable.