One of my favourite instragrammers, Julian Van Horne (@thedisabledhippie) recently started a hashtag that I am loving. It’s #DifferentAidsforDifferentDays and it was created to help explain and celebrate the nuance of disability. The point of the hashtag is to normalize the idea that a lot of disabled people use a variety of different mobility aids and that’s okay and actually a perfectly normal thing for people to do.
I think the reason this hashtag resonates so much with me is because this was definitely one of my biggest hang ups as I became more disabled from EDS. I originally found it hard to accept that I needed a cane back in the days of yore. But I think the thing I found the hardest to grasp was that some days I needed my cane and some days I could skip through town without it. The idea made sense to ME, because it’s my body and I knew this was how my body was moving through the world at this time. But the idea of it making sense to OTHER PEOPLE is what troubled me. I’m someone who will always tell you not to care what other people think, but I promise you every time I say that I am being a ridiculously huge hypocrite because I always have and always will worry about the perception of me. It sucks and I don’t recommend also being this way. But it is who I am and no amount of soul searching or confidence building has really stripped me of that.
So I used to grab my cane when I was leaving the house and then I would stop dead in my tracks and think “oh no, but the guy who works at the convenience store on my street whom I have never had a real conversation with and whom I should not actually worry about saw me yesterday WITHOUT a cane and now he will see me WITH a cane and he will wonder what is wrong with me and if I’m faking it.” Or the opposite of that which was: “Oh no, but the guy who works at the convenience store on my street whom I have never had a real conversation with and whom I should not actually worry about saw me yesterday WITH a cane and here I am out for a casual stroll today without one so he will think I’m cured and or faking it!”
That was my inner monologue for a long time. In a lot of situations. About a lot of different people. It was not fun.
But then there came a time when I really couldn’t walk to the store without my cane, no matter the day. I needed that extra support all the time. So it became easier for me to step out into the world. I still worried about the usual: will a stranger ask me what’s “wrong” with me, will someone say I am too young for this mobility aid, will people stare at me, etc. etc. But those worries about the inconsistency of my mobility aid disappeared.
And then there came a time when I needed to upgrade to another mobility aid and it all came flooding back! The joy of life with an unpredictable disease! So I got crutches. And sometimes I would need to use two crutches. Sometimes I would just need one. Sometimes I would be annoyed by my crutches or they just didn’t match my outfit so I just wanted to use my cane.
Those feelings of dread resurfaced. “What will they think of me now? Using all of these different but equally fun and stylish mobility aids?”
And then I got a rollator. And that rollator can transform into a transport wheelchair. And then I got a manual wheelchair.
OH BOY. So many variations of mobility aids. So many concerns about what people would think of me and hang ups about confusing those around me.
And, while I still care what other people think to an unhealthy degree, it just got to a point where I realized that my mobility needs trump that little voice in the back of my head that stresses about these things. So now I switch back and forth between all of these different mobility aids on a daily, and sometimes even hourly basis. They are tools that help me physically navigate the world. I like navigating the world and not being stuck on my couch. Therefore I use those tools in the way that I need to. It seems pretty simple to me.
But one of the reasons it was such a hang up for so long is because it does not seem like a simple thing for LOTS of people to grasp. It confuses so many people to see a disabled person present their disability in different ways. For many people there is a very narrow box of what disability is and they think anyone who is disabled has to fit into that box. People like me, who are disabled in different ways one hour than the next tend to tip that box on the side and shake it around and really make other people uncomfortable because this isn’t what they thought “disabled” was.
And I’m at a place with my disability and with my confidence level where I often really enjoy being one of the people that can shake up that idea of what disabled has to look like or act like. Because the idea that any large group of people should be the exact same is a bullshit idea. I mean, somedays I would really love to just be someone who is going to the store to buy chocolate who happens to be using a crutch or whatever, and not someone who is out in public with different mobility aids as a teachable moment for non-disabled people and who is making a point about the nuance of disability. But here we are!
And as a teachable moment for all of you out there who may be quick to think “hmmm, she wasn’t using a wheelchair yesterday but she is today and that doesn’t seem normal,” I present to you the following. This is something that you should never ever expect a disabled person to explain to you. Because a disabled person never owes you an explanation about why they need to use the mobility aids they use. But I will take one for the team.
Here are the reasons why I might be using the particular mobility aid that I am using. This isn’t just for the non-disabled people who often ask me this, but also for the disabled people who message me and ask me how I know what mobility aid to use when, probably because they are also filled to the brim with dread about having to justify their choices.
I always use a cane or crutch to get from my house to the car. Even if I will be using a different mobility aid at my destination. I use my crutch more often than my cane but sometimes my cane is closer to the door than my crutch so I just grab it and go. I might not necessarily need it in that moment but I might need it to get back in the house when I return from wherever it is I went.
Sometimes I use my cane when I am going somewhere that involves next to no walking and maybe I will be sitting in a very crowded waiting room and it’s easier to have a small cane than a bigger crutch that I have to keep making sure I don’t knock over onto strangers.
95% of the time I use one crutch to get to the car. I often have a crutch and another type of mobility aid like my rollator or wheelchair with me. If I’m just going into a fairly small store or I’m having a really good leg day, I just use one crutch because it’s easier.
I use two crutches when my leg muscles are really mad at me and not cooperating. They offer more support. But I also have a bad arm so it has to be a day when I can put weight on both arms.
I also use my crutch(es) when I know I’m going somewhere inaccessible. I can still take stairs with crutches. It’s not fun but I can do it and still get into places that suck and don’t have ramps. I am very lucky to have this option. Lots of people don’t, so businesses and the government should really step up and make the world a more accessible place instead of being asshats about it.
I use my rollator when I’m going out for a longer period of time than just dropping by a small store. It’s especially good for shopping because I can put things in the pouch underneath or lay them on the rollator bench and still have my hands free to do things. It also has a cup holder so it is my go to Chapters/Starbucks mobility aid. If I’m going somewhere like Chapters I can sit on the bench when I’m reading the backs of books or trying to talk myself out of buying a puzzle that is 25% off. Also great for perching on when standing in a line because my body is really truly not good at just standing still. My joints basically collapse in on themselves and I fall over.
Sometimes if I REALLLY want to try walking but I’m not totally sure how long I will be able to do it for I also bring the chair attachment of my rollator so it can easily be turned into a chair that someone can push me in. This is for situations where I don’t plan on being out for a long time because I don’t super duper love having to be pushed by someone else.
Probably my biggest rule for knowing when to use my wheelchair is if I am going to a place or going to do a thing that I would otherwise say “nah, I should just stay in bed because I don’t have the leg capacity to do that.” That usually means going to the mall to do some shopping, going to a movie on a bad leg day, going somewhere like The Rec Room that would normally involve a lot of standing in one spot while playing fun video games. When I eventually go to Disney World again it will definitely be with my wheelchair (and probably a crutch so I can still walk around the hotel).
There you have it! Those are my reasons for using the mobility aids that I use when I use them. Everyone else who uses different mobility aids, or even just one mobility aid but also just walks unaided sometimes, also have similar reasons and probably plenty more. We aren’t doing this “just cuz.” We are utilizing the tools we need in the most efficient and helpful way for our bodies, and our bodies work differently all the time.
So if you see someone using a cane one day, a wheelchair the next, and then out for a brisk stroll without a mobility aid in sight the next day, try not to even think inside your head “hmm, that’s weird.” And definitely don’t say it out loud to them. And definitely don’t ask them to explain themselves to you because that’s some gross nonsense right there. If one of your buddies ever makes a comment about this, now you can help educate them too. What a beautiful world we live in.
Also, while I am here offering you etiquette advice, please refrain from using disability or mobility aids as a conversation starter. I would rejoice so much if I never had to spend another awkward elevator ride with a stranger who is trying to guess what part of my body I have injured because I am using a crutch. WHY ARE PEOPLE THE WAY THAT THEY ARE?! If you absolutely have to say “cool crutch, pink is my favourite colour” or something along those lines I will say thank you and then feel good about myself, but 9/10 times that is not what someone wants to say about my mobility aid because they are too occupied by the desire to know the entire medical history of me, a complete stranger.
IMPORTANT TAKEAWAY FROM THIS INCREDIBLY WONDERFUL AND THOUGHT PROVOKING BLOG POST:
I willingly gave you an explanation of why I use different mobility aids to help explain the complexities of this topic, but you definitely are not ever automatically entitled to that from me or any other disabled person.
Disability looks different on everyone, and often looks different each day on the same person.
That’s just how it is. Deal with it.
AlisonSeptember 22, 2019 at 1:49 pm (4 years ago)
Thanks so much for this. I use walking poles but after 2 weeks of down time on vacation going to need the walker tomorrow when I go back to work. There will be states for sure. Sigh.
BillSeptember 25, 2019 at 6:22 pm (4 years ago)
Great post most of us can empathize, it’s a shame so called ” normal” people don’t seem to be able. Im still able to use a cane, but only for 20 mins or so. Rollator added soon.
Gretchen W AutrySeptember 25, 2019 at 6:54 pm (4 years ago)
I. FUCKING. LOVE. THIS. POST.
Theresa AlcazarFebruary 19, 2020 at 2:07 pm (3 years ago)
YOU NAILED IT!! Wonderful post.
KirstenDecember 12, 2021 at 2:35 am (1 year ago)
I’ve been forcing myself to walk without aids for 6 years and no I’m really a mess. I’ve recently started using the scooters at loblaws but everyone who works there is like “there’s nothing wrong with you, you’ve been walking for years here so you’re obviously faking” …. WhaT they don’t see is me taking 15 minutes to stand up from the car seat when I get home and falling while sobbing because the pain is so bad. I can’t bring in groceries or lift a finger to help my mom anymore because I immediately have to get into bed and scream into a pillow until my emergency painkillers kick in.
Sharon DalyMarch 13, 2022 at 5:17 pm (1 year ago)
Great post. Now 14 years disabled by CIDP, I need support to take even one step, so I use a rollator with a tray around the house, a lightweight rollator with a seat on short trips to a restaurant or friend’s house, and my new Rollz for walking in a shopping center in case I get too tired and need the wheelchair attachments and my husband to push me. I would like to rely on the wheelchair service at airports and box up the Rollz as checked baggage, but worry about damage to the Rollz. Any experience with this?
damselinadressMarch 13, 2022 at 8:36 pm (1 year ago)
I’ve never actually travelled with my Rollz so I don’t have any experience with it. But I do have the travel bag for that purpose – do you have that accessory?
Sharon DalyMarch 13, 2022 at 9:34 pm (1 year ago)
Thanks for your reply. I have the case, but it doesn’t cover the wheels. If I figure it out, I’ll post again to share with other Rollz users.
Keep up the good work!
damselinadressMarch 13, 2022 at 9:40 pm (1 year ago)
Ohh I didn’t even realize it doesn’t cover the wheels because of my lack of travel! I’ve also mostly been using my wheelchair these days too. But if I see anyone travelling with it and they have solutions I will let you know!
Sharon DalyMarch 14, 2022 at 12:40 pm (1 year ago)