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When I Feel Judged for Having an Invisible Disability

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I wanted to take the time to explain how I can be judged because I “don’t look disabled.” How are disabilities different from being “visible” to “invisible?”

Dystonia comes in many forms; some of these forms are more noticeable or visible than others. I consider myself lucky at times, not because I have dystonia but because my symptoms may not be as debilitating as others. My dystonia affects my mouth, making my speech slurred, disoriented and I struggle with eating. My hands are also affected, which causes some of my fingers to involuntarily curl inwards, making it very difficult to do many day-to-day tasks, such as doing buttons or zippers. Sometimes I can be messing about for five to 10 minutes, trying to be patient and do them by myself. Botulinum toxin injections help to ease my symptoms for a short period of time.

I have found with society today, if your disability is not visible, people think surely you can’t be disabled. It’s such a shame that society can be so judgmental and closed-minded. I’ve been told many times, “look at you, you’re too fit to have a disability” or that I am “a fake.” Those comments are sometimes very hard for me to take, and that’s why I had to step up my dystonia awareness and show the vulnerabilities associated with my condition. By posting videos of my speech and hand therapy sessions, I felt it gave a insight into my struggle with dystonia and how I cope.

I occasionally model, and keeping fit is a huge part of managing my dystonia symptoms, both physically and mentally. I train hard and to the best of my abilities, because it makes feel good about myself and in some sense it makes me forget I have dystonia. I look at a photo of myself from the past and I think “look how far I’ve come.” That makes me feel so damn proud of myself.

Whatever I say or do, I know there will always be people who will judge, but unfortunately you have to take the rough with the smooth. We need to remember that disabilities come in all different shapes and sizes, and try to see the bigger picture. Each of us have our personal struggles to deal with, and nobody should ever feel entitled to judge on the basis of appearance.

In my experience, when you go through a life-changing ordeal, your mindset does change. I’m the first to admit that when I was younger, before dystonia, I could be very judgmental. I lacked education and was often swept up by society’s idea of what’s “normal.” It is a shame that it took something like dystonia to change my  thought process, but it did and now I am going to do my best to educate and inspire people to be a little more open-minded before passing judgment. Maybe take a step back and think, do I know this person? Do I know their struggles? Listen to their reasoning or explanations and re-evaluate.

As Buddha said, “If you propose to speak, always ask yourself: is it true, is it necessary, is it kind.”

Follow James on his blog.

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Originally published: December 28, 2016
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