My mornings used to consist of jumping out of bed, brushing my teeth, and getting ready for the day without a single thought as to how to accomplish such simple tasks. That all changed about five years ago.
Growing up, I always wondered why I had such large calves. I was always told they were normal, “beautiful,” with the occasional “That’s what everyone wants” thrown in. Sigh. I believed it, or I made myself believe it at least.
Fast forward to “I wish I was calling with better news…” These words turned my life completely upside down. That was a phone call I received after weeks of waiting for the results of my blood test, and after months of wondering why it was so hard for me to climb stairs, to get up from my chair, or to stand up to pray. I finally got an answer for it all: I’m a carrier of a genetic disease called Duchenne Muscular Dystrophy (DMD).
DMD is a disease that has proven to be fatal for boys. Which means, I have a 25% chance of giving birth to a boy with this painful disease. I thought that was the extent of it. After doing another blood test, I found out that I was a symptomatic carrier. This means that although I don’t have the disease, I have the symptoms of it. The main symptom being muscle weakness. I’ve always thought I struggled with climbing stairs because I simply wasn’t active enough. I always thought my constant falling was because I was simply clumsy. And I always thought my large calves were just that.
The thing about being a symptomatic carrier is the fact that my disability isn’t obvious. Disabilities aren’t always obvious.
You may be wondering, “Well, why can’t you just strengthen your muscles?” It doesn’t work that way. There is absolutely nothing I can do to strengthen my muscles. Or at least, researchers haven’t found anything yet, anyway.
The thing about being a symptomatic carrier is the fact that my disability isn’t obvious. Disabilities aren’t always obvious. There is an extra burden put on those who have disabilities that we somehow have to make others understand. However, that shouldn’t be our burden to carry.
I became fully aware that my disability wasn’t obvious after leaving an elevator and having a woman say, “Wow, an elevator just for one person.” This callous statement was accompanied by an epic rolling of her eyes. That’s when it really hit me. Not knowing that my condition makes it extremely difficult for me to climb stairs, imagine how many other people endure comments like this? And it is all because of a lack of understanding; a lack of compassion.
I shouldn’t have to worry about making others understand disability. Honestly, the reality is that one can’t ever understand unless they, themselves, have a disability.
She doesn’t feel the shame I feel because when I do have to take the stairs, it takes me a lot longer than the “average” person. The shame I feel when someone has to wait to go down the stairs because my husband is helping me climb up. The shame I feel when I hear their uncomfortable giggles as they wait to take the stairs. It isn’t easy, and I shouldn’t have to worry about making others understand disability. Honestly, the reality is that one can’t ever understand unless they, themselves, have a disability.
Recently the hashtag #AbledsAreWeird was created by writer and disability rights activist, Imani Barbarin. Her intention was to highlight a shocking lack of understanding and compassion from those who don’t have a disability, otherwise known as “Ableds.”
I can only speak to my experience as someone with a disability that isn’t physically obvious. According to some, because my disability isn’t obvious to the naked eye, it’s not real. If I’m struggling up the stairs, I need to work out. If I’m walking slow, I need to work out. If my calves are large, I need to work out. I sometimes feel like an imposter hanging my disabled placard in my car because I know as soon as I step out, I’m being judged. There is also a lingering fear of being judged for praying while sitting at the masjid. One day, I may be able to muster up the strength to do it, but I’m not there yet.
It’s easy for a joke to be made or judgement to be passed because there is no clear physically obvious explanation as to why I’m struggling to climb the stairs, why I need a parking placard, why I’m taking the elevator, or why I’m praying in a chair.
I have struggled with accepting myself. I have struggled with accepting this as my new reality. Having these struggles and then having someone make a comment can set me back in that acceptance process. If you’re feeling the same, I’m right there with you. I acknowledge that our pain isn’t the same and I acknowledge that I can’t understand exactly what you’re going through. I acknowledge your strength. You’re here, fighting, when giving up is so easy. Not only fighting through the struggles of living with a disability, but the struggles that come with living in a society that is so quick to judge.
There is an extra burden put on those who have disabilities that we somehow have to make others understand. However, that shouldn’t be our burden to carry. The bottomline is that we need a lot more compassion. We never, ever know what someone is really going through. Every one’s situation is different.
If you want to lend a helping hand, don’t assume you know what we need. Don’t take your lack of understanding out on us. Talk to us, ask us and even more important than that, listen to us.