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There are a lot of challenges that come with being disabled. We all have our ups and downs. And it may seem like because I have the extra burden of experiencing a disability like FSHD Muscular Dystrophy, it would be a challenge too daunting to fathom, let alone one that could be dealt with as anything of a good thing.

Facioscapialhumeral FSH Muscular Dystrophy is a progressive, inherited genetic disease. That means that over time, the disease will get worse. And having FSHD, that means in simple terms, the muscles weaken and atrophy more and more over time, leading to the inability to run, or raise your arms above your head. Eventually you may lose your ability to walk requiring a wheelchair. And then maybe if you don’t succumb to an illness or complication, you become dependent on others for everything as your body weakens as the muscles wither away.

Such a future sounds so bleak when it’s put that way. But it’s only perspective. One that is unfortunate, and is the founding of the stereotype that envelopes us who do suffer of this disease. It’s no wonder why it’s hard for others unfamiliar to see beyond that. But, it’s a view that is just a negative and narrow way of seeing someone with FSHD.

You may not know what I have when you’re just glancing at me in public, or what FSHD is if you asked me. What you do see is a woman in a wheelchair. Don’t let the wheelchair cast a judgement meant to be reflective of how you feel about me or of those with disabilities. I’m going to tell you why my diagnosis and all that it encompasses was the best thing to happen to me.

Even I will admit that I was a different person before my symptoms began to really affect my abilities. I too was a cocky, shallow, image-obsessed person in the mirror fixing my make-up, who was embarrassed by my disabled family members. My mom, all of her siblings, and her mother — my grandmother — all were diagnosed with FSHD.

And even though I knew since a young age that I also had this devastating disease, I didn’t at the time have any symptoms, so I felt like it just wouldn’t happen like that to me. It wasn’t until my disease manifested into my physical appearance over the years that my diagnosis actually sank in for me.

It opened my eyes. It was almost an instant once it hit me.

It tore down my prejudgments, prejudices, my stereotyping, and preconditioned thinking — not only of viewing others, but also of the world around me. My whole mindset completely changed.
I was no longer seeing through the lens of shallow evaluative processes and obsessions over image or privilege, or perhaps the lack thereof that seem to be mainstream thinking these days.

Like the removing of a blindfold, I began to see people and the world around for more than just what the topical view provided. I was brought in touch with my own humanity and mortality. I was given the gift of empathy and compassion for others. I was given the gift of knowledge of our purpose to care for humanity, especially for those of whom might be vulnerable and suffering, and in need of a little help beyond their own ability. I was gifted the vision to see beyond the flaws of the human condition to advocate for an equal life experience for those with disabilities.

Sometimes the only way we are able to change our perspective is because our perspective is changed for us. Too many people have this thought in their head that nothing “bad” will ever happen to them. This is actually just a defense mechanism our minds deploy to protect us from negative thoughts created while contemplating what it would be like if we were to experience something so terrible such as FSHD.

It’s an unpleasant thought, so we avoid them. We do the same thing to people. When we see someone who is disabled, we also avoid them. Unfortunately for us who do happen to be disabled, we do not have the luxury of just avoiding our disabilities. We also do not have the luxury for others to avoid us and our needs.

We need more people to open their eyes. We need more people to advocate for our abilities and our needs to help us gain a foothold into independence and the world we are supposed to share. Promote and support what we can do as people, not a diagnosis, and what we can achieve if given the opportunity and proper tools/equipment, instead of just seeing those with disabilities as their needs and of how much it would take to accommodate us.

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