Throughout Disability Pride Month, I’ve been trying to share different parts of my experience as a disabled woman. I think this will probably be the last post about it (where did July go?!). Since I share a lot about style and what I’m wearing, I thought that I’d talk a little bit about what it’s like to care about fashion when you’re disabled – why I love it, and when it can be a struggle.

Open Style Lab (follow them on Instagram!) does some really cool work around inventive, adaptive style for people with disabilities. They posed a really great question the other day that made me stop at think, and I wanted to share it here.
How is your identity impacted by fashion and how does your disability overlap with that? Do they conflict or compliment each other?
For me – it’s a little bit of both! Sometimes my fashion compliments my disability (those are the best times!) and sometimes they’re in conflict with each other, and those are the times I have to be creative.
Trying on clothes in store for me is really, really hard – I basically do all of my shopping online. Not to brag, but I’ve become somewhat of an expert online shopper – I have a really good sense of exactly what styles work for me, and which ones won’t. There are so many things that I have to think about – what looks good sitting, what styles hit me (very) petite frame in the right places, what won’t irritate my feeding tube. It’s really all about knowing my body really, really well. For example – a midi dress turns into a maxi on me; if I buy a maxi, it often looks like I’m just swimming in extra material! Things like smocking, on the other hand, are ideal – it has built in adjustability so I don’t have to worry as much about it fitting just right.
And that’s just the actual logistical part of it all! Style is so much more than that – it’s about your identity and being able to express yourself through your clothing. And so often, when people see me, they just see the wheelchair – and that’s it. That’s what they notice, more than anything else. I can’t control that – it’s always there, wherever I am, and there’s nothing that I can do about it. But what I can control is what else they see, if they do decide to keep looking once they notice my wheelchair. What I wear can give them a little hint to who I am. It can help me feel less different.
That’s why I get so excited when style trends work for me. When the Nap Dress came out in XXS, I ran to buy it. It was in my size, it was a style that works perfectly for me in my chair, AND it let me be part of the Nap Dress “community,” as silly as that might sound at first. It’s nice to feel like you’re a part of something when so often, people only notice the thing about you that’s different.
SMA (my disability) is progressive. That means that over time, things get harder for me – I lose strength that I used to have. That even affects things like what I wear. Over the last few years, it’s gotten more and more difficult for me to wear pants – they’re much harder to get on and adjusted and comfortable… so I’ve basically just stopped wearing them. So I’ve had to adapt and adjust my style and what I wear (honestly… this coinciding with being home a LOT more really worked out well for me, ha!). I had to find new ways to show off my style with less leather leggings (which I loved). It’s a challenge… but a fun one, usually.
This is all why I get so excited when I see a new brand dipping a toe into the adaptive space, or using models with visible disabilities and being inclusive in their designs. It’s a way to seen, and to be seen, the way that you see yourself. It might sound inconsequential, but it means a lot.