31 Days of SMA: My Disability Is Very Much a Part of Me

Photo courtesy of LaMondré Pough

Day 22 of 31

This is LaMondré Pough’s (lamondre_p) story:

Everyone has a desire to be seen. When I say that, I’m not talking about a gratuitous need for attention, or someone stricken with the “pick me” syndrome. I’m talking about the recognition that you are an individual, the acknowledgment of your own personhood.

So often when referring to disabilities, many of the other characteristics that make you who you are, are ignored. Or when talking about your other traits, the disability is shunned or completely overlooked.

For example, and this happens to me more often than you’d think, after working with someone for a period of time, we’ll typically have a conversation that goes something like this: “LaMondré, you are smart. You’re talented. You bring value. I don’t even see your disability.”

This statement is rooted in ableism. Ableism is discrimination and social prejudice against people with disabilities and/or people who are perceived to be disabled. It characterizes people with disabilities as inferior to people without disabilities.

I completely understand the spirit in which such comments are made. What people mean is they don’t see any deficits. They don’t see anything negative that is synonymous with disability.

I believe you should see my disability. Why? Because it’s a part of who I am. It is not the defining point, but it is certainly a defining point. Just like the fact that I’m a Black man. It is not my only defining characteristic, but it does inform my perspectives.

Disability in itself is neither negative nor positive. It is simply a point of diversity. My SMA, with all its challenges and adventures, is a part of who I am. I did not ask for it, but I own it. And it does not increase or diminish my intrinsic value as a person.

I had to learn how to embrace all of who I am. I also had to learn how not to allow the opinions or expectations of others to determine how I saw myself. Once I did that, I became free. Free to live this big, full, authentic life — not as this “special” dude with SMA, but simply as LaMondré.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.