I haven’t been completely honest. I often take pictures in front of the mirror in the entryway of my house (and believe me, if you’re tired of looking at the nasty rental carpet, imagine how I must feel). However, if I’m wearing an outfit out of the house, I am often using a cane as well at the least, if not my rollator/wheelchair (above). I have complicated feelings about talking about this, mostly because I don’t feel comfortable making chronic illness a major part of my identity in this abridged representation of myself on the internet when it’s only a small part of my multifaceted identity in my real life. It’s boring/not fun to deal with so it’s not super interesting for me to think about or wax poetic on right now. While I may write about my experience with chronic illness and disability in the future through the lens of some larger, universal theme, for now it’s not the main focus of whatever platform I have here. Maybe that will change! I am so grateful to everyone else who does have the stamina to create content that makes conversations around accessibility more, well, accessible. In a recent episode of the Binchtopia podcast about aging Julia Hava and Eliza McLamb (linked to her Substack) discussed the idea that disability is the final frontier of intersectionality, because everyone will experience some form of disability in their lives if they live long enough, and it’s just a shade too close to thinking about mortality to be comfortable for most people. Truer words!
Here are some comments I’ve gotten using a cane in public:
“What happened?”
“Hope you feel better soon!”
“You’re too young to be using that!” (this was outside of a major hospital outpatient clinic)
“You’re too pretty to be using that!”
To be fair, most people are not rude, just curious. It took me a long time (four years) to concede that I needed one in the first place, until I went to the Monterey Bay Aquarium with one of my best friends a few years ago. I was so weak and tired on my own two feet that I could hardly pay attention to or enjoy the aquarium. The major reason I resisted mobility aids for years was the stigma. On the one hand, it’s a visible sign that you can’t do the physical activities everyone else can do without you having to explain something that no one else can see. It’s self-explanatory, which is kind of nice. On the other hand, it’s a visible sign that you can’t do the physical activities everyone else can do — and people feel weird around you, where they didn’t before.
When I discussed my difficulties accepting mobility aids with the same aquarium friend, she had a great point about their stigma. Most of them are ugly! The fact is that if you’re using one, it’s really not by choice, so you are pretty much at the mercy of WalMart or Amazon or whatever else. I’m not talking about a choice of patterns and handles, though many of them have an aesthetic that resembles what I can only describe as “bad mobile games”, because there are plenty of those. I’m talking about mobility aids as a Design Object. I want the Frank Lloyd Wright of mobility aids. Especially if you’re like me and you really enjoy Dressin’, the ugliness of mobility aids perpetuates the reticence to accept that you actually need one.
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There’s certainly demand for cuter mobility aids among disability activists on the internet, but since accessibility is not a conversation we (speaking societally) like to have, it falls far, far down the list of problems. Beggars (people with disabilities) aren’t allowed to be choosers. There is ONE person who has answered the call of providing cuter mobility aids. That person, to my shock and awe, is none other than Martha Stewart. The cane that I have gotten the most compliments on by far is this teal gingham one in Martha Stewart’s “collection” for Medline. Just by virtue of not having the mobile game aesthetic, it is already leaps and bounds above most of what I have seen.
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I once made a TikTok talking about how hard it is to style compression socks, and I got comments saying essentially “if you really need them then it shouldn’t matter what they look like and you shouldn’t be concerned with looks.” Okay… whatever. I’m laughing at myself in the above photo because, ain’t no way in hell I would wear that outfit out of the house — and those are some of my MOST presentable compression socks. I won’t deny that part of the complex feelings I have around mobility aids are my own vanity. That’s fine though. You have to give up a lot when you’re sick already; I’ll let my vanity stick around.
I am also very fortunate to have the Rollz, a Dutch-made mobility aid which interconverts between a rollator and transport wheelchair. I don’t use it every day, but for big days at a zoo, botanical garden, music festival, etc. it is invaluable! The Rollz is, I think, a great example of design that is really functional and sleek-looking, reducing the stigma around mobility aids. Its existence proves that what I’m asking for is possible.
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As I was taking these pictures, I thought more about how I felt looking at myself with my mobility aids in the mirror. I do really think my outfits are cute! As someone who puts together outfits that make me feel good, to see and be seen, it is hard to feel like people look at me and don’t see me, but rather the cane or the wheelchair — and then give me a sad look. It doesn’t make me feel good or like a real person. It makes me feel like I shouldn’t even try because no matter how I present myself, I’m going to be overshadowed by the mobility aid. And honestly, maybe that’s not how people see me and it’s all in my head! But you can understand that it only takes a few comments like the ones I (and any other young disabled person) have gotten to make it feel that way. If it’s a choice between doing normal mid-twentysomething things and leaving the house in a wheelchair or just staying home, though, I have to choose the wheelchair.
What are you up to this week? I am probably going to get behind on posts in the coming weeks because of a work trip but I’ll do my best. I have been enjoying Jenna Phipps’ house renovation vlogs on YouTube, I feel bad about my neck by Nora Ephron, and the mixed uncured charcuterie pack from Good & Gather at Target. Where I live it’s only $5.19!
thank you so, so much for writing this – I feel so seen. I’ve been putting off wearing compression socks for years and years due to self-consciousness (why are so many of them so awful looking?!), but my body is not happy with me and I definitely need to start putting its needs first. I remember going to Tiktok to find cute ways to style them and being thoroughly disappointed by the comments and videos I saw, so I really appreciate seeing someone talk about this while sharing their super cute outfits!
I know so many people in online chronic illness communities are too exhausted to think about fashion (I certainly am more often than I’d like), so it’s something I’ve hesitated to bring up until very recently. It means a lot to see someone else work through their own complicated thoughts around this 🤍
Oh but I love the compression socks! Also yes to talking about this! It's so important (but fully understand being over it) and I wish we were generally more curious about how to redesign our world without folks getting huffy about it. The intro to this piece lives rent free in my head lol https://www.theguardian.com/artanddesign/2021/may/19/why-are-our-cities-built-for-6ft-tall-men-the-female-architects-who-fought-back