SMA Awareness or Pride?

Everyone in the SMA community knows that August is our month... well, everyone except for me. I’m ashamed to admit I did not know about SMA Awareness/Pride month until this year. I’m not joking.

SMA Awareness Month

In past years I might have heard whispers or received some kind of email from Cure SMA or another organization and sadly never paid attention. But this year, I’m seeing #SMAAwarenessMonth posted all over Facebook and Instagram.

It’s like not only did I recently discover it but so did the rest of the SMA community.

One of those posts was by a friend of mine who shared an image that documents the history of SMA from discovery in the 1890s to the anticipated release of SMA medication. And in the Facebook post, my friend wrote, “Don’t get me started on the argument whether August should be an awareness or a pride month.”

My friend seemed to imply that there is a correct answer, that there’s only one way to celebrate this month. They didn’t say which side they believe to be correct, but either way, I strongly disagree with the idea that awareness and pride are mutually exclusive when it comes to a disability.

Is August a time for awareness or pride?

To me, it’s not that simple. So, this got me thinking... Is this our time for SMA awareness or pride?

I guess the answer to that question depends on who you ask. A parent with a child who has SMA might be more focused on the awareness of this month. Or, they could feel an immense amount of pride from taking care of their child, advocating for them, and helping them navigate a different life.

An adult with SMA would probably have a similar answer, but more along the lines of health care equality and shaping the world to be more accessible. They may feel some pride in the obstacles they’ve overcome like battling an illness and coming out the other end alive or feats of living independently and accepting their disability.

Educating others about SMA

I feel like every day of my life is SMA awareness. Unfortunately, I’ve found that people don’t understand a situation, or care to understand, unless they live it. Educating others can feel like a full-time job; some days you want to do it and other days you don’t.

But that shouldn’t stop you from speaking up because it’s our voice that can create change for the younger SMA community.

What I’m really trying to say is that if we’re raising awareness every day, then why not spend this month celebrating our achievements and who we are? Just because I have a disability doesn’t mean I shouldn’t be proud of it.

Proud to spread awareness

Honestly, I’m very proud of SMA because it’s shaped who I am and I don’t want to know the me without SMA. I’m sure he’s not nearly as cool or wise.

But I understand my friend’s view that we still have a long way to come regarding mass awareness. However, I truly believe you can’t properly spread awareness unless you have some pride in who you are and what you are trying to say to the world.

So, on that note, I’m officially declaring August the Awareness Month of SMA Pride!