I had friends over on Friday night, and it made me think about all the different ways that having SMA affects my social life. Even just a simple night out (or in) with friends comes with a lot of different considerations and logistics! I’ve talked about some of these things over the years in different posts, so I thought I would put it all together for this week’s SMA Awareness Month post.
Hosting at Home
Hosting is my favorite way to spend time with friends. Yes, part of it is because I’m more of an introvert, and it’s much nicer to be hanging out in my own space. But the much larger part of it is how much logistically easier it is for me! I know that the space is accessible, I know that the bathroom is accessible, I don’t need to worry about accessible parking or an accessible table. Assuming that my parents are home, I don’t need to plan out my bathroom time quite so methodically. Everything is just a whole lot easier for me! I’m really happy that my friends are willing to come to me. It does, however, make meeting new people a bit trickier.
Being Heard
Another thing that makes it tricky for me to go out places? Simply being heard! If you’ve ever watched any of my reels on Instagram, you may notice that my voice is pretty quiet and hard to hear. When you don’t have a ton of lung capacity, it’s hard to put a lot of power behind your voice! Restaurants are often LOUD – background music and the ambient noise of other people’s conversations, when mixed together, are often louder than my voice can be. I try to sit outside if at all possible because it’s usually much quieter. And bars? Bar height tables means I can basically rest my chin on them, and the volume is way louder than restaurants! So I mostly listen, smile, nod, and try to gesticulate to get my point across.
Many Places are Inaccessible
This is basically the reverse of my first point. Once you start looking for it, you realize SO many places are still inaccessible. Some are in obvious ways – a flight of stairs to get in – and some are a little more subtle. Maybe the majority of tables are bar height ones. Or maybe they don’t take reservations, which means you have no idea of how long you have to wait for a table. When you have to plan out your bathroom stops before you leave the house, and have to plan a time when you’re going to be dropped off and picked up, no reservations are a lot less appealing. Or maybe the tables are crammed together so tightly that you have to ask other diners to get out of their chairs so you can get to your table. It’s all just a lot! I really do enjoy going out to eat, but I have to really make sure I’m prepared for it, too.
Explaining SMA
When I do happen to meet new people, my wheelchair is always the elephant in the room, too. It’s tricky to know when to explain SMA, and to figure out the right amount of information to share, too. I’m pretty open about my disability! But I like to be seen as a person, too, and not just a wheelchair. So I don’t necessarily want to deep dive into a conversation about SMA in a casual chat with a stranger. It can be tough to toe the line of not ignoring my disability when I’m talking to people, but not making it my whole personality, either. Honestly, this is something I still struggle with, and I think I’ll always be figuring out and adapting to.
Dealing with Stigma
And finally… being out and about means dealing with people’s stigmas and stereotypes about disability. It means having people stare at me as I go through the restaurant, or make comments like “slow down or I’ll give you a speeding ticket!” as I go by. It means seeing expressions of pity on people’s faces, or having them talk about me to the friends I’m with instead of talking directly to me. I’m pretty used to all of this, and normally, it doesn’t bother me at all. But sometimes, I don’t want to deal with all the baggage that can come along with existing in the world with SMA. And that’s why, again, hanging out with friends I know and am comfortable with at my own house is what I often prefer.
