When people stare at me because of my disability
Strangers often misunderstand my Parkinson's symptoms
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Navigating life with Parkinson’s disease comes with many perils and pitfalls. For me, the most prominent challenge is the disconnect between my brain and my body.
The world becomes a much scarier place when my medication wears off. I become powerless, stuck in a paralyzed body, albeit only temporarily. The difficulty is compounded when it happens in public. At home, I am safe, protected from the big, bad world. But when my pesky Parkinson’s is feeling particularly naughty and mischievous, it will make an appearance in public. It loves being the center of attention and making a spectacle of me.
As a disabled person functioning in a society built for nondisabled people, I feel misunderstood and judged. It is hard to hide flailing limbs or slurred speech. People’s interest is often piqued when they see someone shuffling, swaying, or walking in an unusual way.
Their mind goes to the most logical explanation: “Look at her. She must be drunk.” This is a perfectly reasonable conclusion to draw. After all, when you are intoxicated, you do not have control over your body. This is exactly how I feel managing a Parkinson’s diagnosis. I’m not mad when strangers muddle the difference between drunk and disabled. It is ill-informed but easily done.
However, I do get mad when they stare at me because of my disability. It is rude, ignorant, and unnecessary. They can see that I am visibly struggling in my broken body. How does gormlessly gawping at me help my situation? I see the sneaky side glances. I hear them sniggering. My body and limbs may have chosen to catastrophically malfunction, but thankfully, my eyes and ears still work fine.
Unsurprisingly, this affects my confidence and self-worth. Time after time, it feels like my self-esteem has been whacked by an almighty sledgehammer, leaving it shattered to smithereens. In particular, I have found dealing with dyskinesia on a daily basis to be draining and demoralizing. It is not a symptom of Parkinson’s disease but, annoyingly, a side effect of levodopa. How is that for a random piece of mostly useless Parkinson’s trivia?
My overwhelming thought when I am dealing with dyskinesia in public is “I want to disappear,” which is intermittently interspersed with “What the heck are they looking at?” In these moments, I wish to be engulfed in a massive plume of smoke, magically and mystically vanishing. Aha! “Stare at that!” I’d scream.
Note: Parkinson’s 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 another 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 Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
Paul Stolz
A couple of years ago a woman asked me"why does your head move like that?, and then she proceeded to mimic my head movements.
So many of my family and friends were outraged when I told them of this event.
they had so many comebacks most of which I cannot put in print.
I just smiled at her and said OMG my head is doing that I should see a doctor.
she actually shook her head and walked away annoyed.
I have a gallows humor when it comes to my Parkinson's, I find it helps me cope.
Shamsa Hussain
I agree, humour is a key part of being able to cope with the heaviness of a Parkinson's diagnosis.
If you don't laugh, you cry and Lord knows that I've enough crying for an entire lifetime. So now I opt to make jokes and laugh whenever I can.
Anna Maria Gentile
I do understand you as sometimes it happpens to me that my left hand trembles in public. Indeed it is a very annoying side effect but who cares....just think that you are a perfect unkown person to them as much as they are to you and dismss the case..
Shamsa Hussain
Thank you for sharing the personal approach that works for you.
I often think that people “don’t know what they don’t know”. So, while it can be incredibly frustrating, it isn’t necessarily their fault that they don’t understand that your unusual body language and behaviour are the result of a complex neurological disease.
There is a real lack of knowledge and awareness about the myriad ways in which disease and disability can affect people, and how differently those effects can present from one person to another.
Many people simply walk around in a bubble of ignorance because, for them, that is their normative state. I was guilty of it myself before I was diagnosed. It’s part of the human condition. As frustrating as it can be, I’ve begrudgingly come to recognise that ignorance isn’t necessarily malicious. Sometimes, people simply haven’t had any reason to know or understand something until it enters their own world.
Mark Winiarski
A friend told me about a cruise with his wife. One he told others that his wife has Parkinson’s, they relaxed around her. The answer is not to shrink from interactions. The answer is to say, up front, I have Parkinson’s. And move on from there.
Mark E.Ferguson
Kudos to Shamsa. You go girl!