I recently interviewed filmmaker Celestine Fraser on my podcast. Fraser produced a documentary about chronic illness called “ill, actually.” We touched on some interesting topics, including how people with chronic illnesses use social media.
The documentary interviews three people with disabilities about their use of social media.
The good and the bad of social media
I’ve found social media to be a mixed bag. When I was diagnosed with MS, my doctor told me to “find out what MS is for yourself.” (Yes, I rolled my eyes, too.) But during my research I found so many negative resources that I decided to start a positive group that acknowledges the bad times and accepts them for what they are.
Nowadays, groups exist for everyone. I feel the face of social media also is changing. Once a platform to connect with friends, among other things, the internet has become a vast network where anyone can belong. We have sites such as My MS Team and Shift.ms, where you can connect with other MS patients. Gone are the days of receiving a diagnosis and struggling to find someone your age.
But social media also brings judgment and speculation.
Challenging society’s views
In “ill, actually,” we hear from Thor look-alike Ben Mudge. Mudge, a bodybuilder, has cystic fibrosis. He documents life with CF on his Instagram and often posts pictures and videos of himself lifting weights.
Mudge believes that society puts people in a box: You’re either abled or disabled, he says. If you’re disabled, you shouldn’t lift weights. But disability isn’t always black and white. Disability includes many gray areas, those fluctuating conditions that others may never understand.
Some find it confusing that Mudge can do more than an average person in some ways, yet struggles in other ways. People often say to him, “I thought you were sick?” But you can’t tell how a person is feeling from a photograph or a two-minute video. Just because Mudge can lift weights doesn’t mean he’s lying. It means he’s trying to become the best version of himself. Is that not a good way to live?
People also accuse Mudge of being a fraud and claim that he can’t be sick if he’s “so active and well.” If we are disabled, does that mean we can no longer be active? Does that mean we have to give up on life because society thinks we should?
Why do people judge us for things they think we shouldn’t do, instead of encouraging us to do the things we can?
Educating people about disability
Does social media play a key role in educating people about invisible disabilities?
Online communities that connect you to people your age with your condition are important. They also can educate society. How are people supposed to know about our conditions unless we tell them?
Changing society’s ideas
“Bella” is a camgirl who uses social media in a very different way. She uploads frequent photographs and videos using an automatic webcam, building an online character for herself via social media. The internet lets her be who she wants to be, uninhibited by the common misperceptions surrounding her wheelchair.
Bella stays completely anonymous at all times, showing the world an empowered body image that is separate from her wheelchair. She wants to change society’s ideas about disability by displaying her body in a risqué way.
You can use social media however you want and can adapt it to your needs. It can educate, inspire, create a community, and change societal perceptions of taboo topics.
How do you use social media? Do you think social media is good or bad? Let me know in the comments below!
Note: Multiple Sclerosis News Today 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 Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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