I think it's pretty obvious that SMA affects a lot of my day-to-day life - it forces me to be creative, and come up with different ways of doing things. And sometimes it's taking things and using them in a way that has an extra benefit to me - like the things I talk about in my Accidentally Adaptive series. So I thought I'd share some of my current favorite "adaptive" products - things that I use to make my life a little bit easier.
I thought that for my first SMA Pride Month for the year, I'd start out general, with some assorted basics about SMA and what it means for me and my life.
This week, I wanted to share some recommendations for good disability representation on screen. When I say good representation, I mean that the stories told aren't cliche stories of disabled people as burdens, or as someone to be pitied, AND that the actors playing these characters are disabled themselves. This list isn't exhaustive, but the full version of that list wouldn't be that long, either. We still have a looong way to go until disabled people really feel represented on screen.
I am not necessarily the most skilled at doing my own makeup, but it is something I enjoy doing. It's fun to play around with new products and shades, and try out different looks. It's one of the few steps of the getting ready process that I can still do mostly independently, but I've had to come up with little hacks and workarounds to make it work for me and my mobility. One of the products I've found that makes it a little easier for me is my Artis foundation brush.
I posted on Instagram at the end of June asking people what disability-related topics they were interested in reading about, and one of them was transportation and getting around. So I thought I'd share a little bit about how accessible (or inaccessible!) different ways of getting around - public transportation, car, plane, ride sharing - are.
I talk a lot about accessibility out in the community, and it society - inaccessibility in the places I go the most, and the things I like to spend my time doing. But I've realized I've shared very little about accessibility in medical situations. I think that because people think of disability as a medical issue (rather than a societal one), they assume that healthcare must be accessible. I'm here to tell you that mostly... it's not.
I think I've share a little bit about my care needs before, but I don't think I've ever written a full post about it exclusively. It's on the top of my mind right now because my PCA (personal care attendant) was out on vacation last week, so my life was a little more chaotic than usual. I typically use the term PCA when I'm referring to someone who is paid to help me with my needs. Some people might use the word caregiver, some people might use the word aide - there are lots of different terms that get used, but they all mean roughly the same thing. Just wanted to get the language out of the way upfront! Personally, I have a mix of PCAs (well, right now, I have one PCA - more on that in a bit) and unpaid caregivers… aka my parents.
I think today's post might be the first real "Accidentally Adaptive" thing I started using in my own life, many many years ago! Really, the concept of accidentally adaptive came around out of necessity - there aren't that many purposefully adaptive things now, and there were even fewer 10 or 20 years ago. So I found products that already existed to fill the hole of a need in my life - like this cup holder.
I (finally!) got my hair cut at the end of May, so it seems like the perfect opportunity to share a little bit about what it's like for me to get my hair cut as someone who uses a wheelchair. This will be kind of similar to my Accidentally Adaptive post about Drybar, at least for part of it. When I want to get my hair cut, I have two major considerations - the salon (for the hair washing part) and the cut itself. Both parts have disability considerations for me.
It is almost Memorial Day, and to me, that's always felt like the sign that summer is on it's way. It might not be summer temperatures yet in Pittsburgh, but it's still always felt like the sign on the calendar that summer sun will be here soon. Which also means it's time for me to be (even more) vigilant about sunscreen application. This summer, I have a new tool to make things a little easier: the SolarBuddies Sunscreen Applicator.
