Advice for New Ambulatory Wheelchair Users: What I Wish I Knew

Having been an ambulatory wheelchair user for around 8 years now, I honestly cannot believe I have not written a dedicated post on it before.

If I am being completely transparent, the toxic side of the internet has really knocked my confidence over the years when it comes to posting about my own disability. Sure, I will share accessible travel tips, help people shop for folding electric wheelchairs, and write full reviews on my Robooter E60 Pro. But a dedicated post talking about what it actually means to be an ambulatory wheelchair user? I have held back until now.

Thanks to my role at Sociability (where I am actually celebrating my one-year anniversary next month!), we have ended up reaching over a million people with content on ambulatory wheelchair users. Official stats say that around 1/3 of all wheelchair users are ambulatory, but I guarantee that number is heavily underreported. So many people are stuck in deep denial that they actually need, or deserve, to use a chair.

Believe me, I get it. Deciding to use a wheelchair when you can “technically” still walk is one of the hardest mental hurdles I have ever faced. For years, I barely left the house. Because I had some mobility, my internalised ableism constantly whispered that I was not “disabled enough” to use a chair.

It has now been 12 years since my chronic pain started. 12 years since I became Disabled. And you know what? I am disabled enough.

I am disabled enough to be a content creator working on major disability campaigns. I am disabled enough to be sent on press trips for disabled travel companies. I am disabled enough to work for Sociability, an app that helps disabled people find accessible places. I am disabled enough, and I am finally done questioning it.

If you are currently stuck in that exhausting “should I, shouldn’t I?” phase, this post is for you. Here is the advice I wish someone had handed me 8 years ago.

1. A Wheelchair is a Tool for Freedom, Not a Last Resort

I genuinely do not understand how people do not get the concept of being an ambulatory wheelchair user. Before my chair, I would leave the house every 2 to 3 weeks. I think my longest stretch indoors was an entire month. I would spend days in bed preparing for an outing, and then weeks recovering from activities that non-disabled people take completely for granted.

Going for a haircut, a doctor’s appointment, or the food shop left me in absolute agony.

Society sees using a wheelchair as a tragedy, something to be pitied, like you are “giving in”. But what if you are actually choosing to carry on? What if using a wheelchair means you can go to your hospital appointment and then go out for lunch afterwards? Maybe even pop into a shop on the way home too?

Surely everyone can see that is a much better alternative to going to one appointment and then losing two weeks in bed just to recover?

Using a wheelchair is the complete opposite of giving up. It is choosing to keep going, to keep living life, and to do more.

My Advice? Stop thinking about what you are “giving up” and start thinking about what you are gaining back.

My viral video with Sociability explaining what it’s really like to be an ambulatory wheelchair user. This reached nearly 1 million people!

2. You Do Not Owe Anyone an Explanation

I want to make something very clear: no one has actually said anything negative to me in person. Sure, people stare sometimes, but most of the time they are probably just curious.

Even online, it is maybe 5 out of 1,000 people who actually have something nasty to say. Is that worth giving up on the other 995+ people who feel seen and heard by my posts? Absolutely not.

When I was newly disabled, I used to tell every man and his cat my entire medical history, genuinely believing I had to justify my existence to strangers.

I remember getting out of the car once, about to sit in my wheelchair, when a woman stopped and looked right at me. I instantly went on high alert, bracing myself for her to start on me. Do you want to know what she actually said? She just wanted to tell me she liked my cardigan.

On the rare occasions someone has asked why I am in a wheelchair, it has always been children. Every single time, it has been such a sweet, innocent interaction that left me smiling. Children are genuinely curious; they just want to learn.

When it comes to adults, I know plenty of disabled people who handle questions in totally different ways:

– Make up a dramatic story: We do not owe strangers our truth, so why not have fun with it?
– Tell them you do not share your medical history: And you do not have to be overly polite about it either.
– Tell them the truth: If you want to, and if you feel comfortable doing so.

You also do not have to tell everyone who asks to bugger off! It is completely up to you. I still find myself telling people how I became disabled when it naturally comes up in conversation. But usually, I have been talking to them for a little bit first, or they are sharing something about their own health.

No one is saying you are not allowed to tell people. It is entirely your call.

My Advice? You do not have to explain your disability to strangers. Your medical history is private. If someone stares, remind yourself that their lack of understanding is not your responsibility to fix.

3. Listen to Your Body

Internalised ableism is sneaky. You will have one unexpectedly good morning, think, “Hey, I feel great, I do not need the chair today!”, roll up to a venue with zero seating, and end up stranded, crying, and in agony an hour later. I’ve been there, but now? I take my chair most places now and if I’m travelling or away from home, I don’t risk not using it.

It took me a long time to realise that using a wheelchair on a good day isn’t a failure or a waste of the chair. It is actually how you protect that good day so you don’t spend the next three recovering. It is always better to have your wheelchair with you and barely use it than to be miles away from home, stranded and desperately wishing you had brought it.

My Advice? If using a wheelchair can help you manage your pain and fatigue, it is always worth using. Why struggle through the day just to prove a point to a body that is already fighting you?

4. Invest in the Practical Comforts

As an ambulatory user, you might spend hours sitting in your chair, or you might alternate between sitting and short bursts of standing or walking. Either way, when you are using your chair, you need to be both comfortable and safe. What works for looking after your health will be different for someone else, I have my chronic pain essentials here. Give yourself full permission to trial things and make your setup work for you:

• Invest in a proper cushion: Do not settle for the basic, paper-thin cushion or sling seat that comes with standard wheelchairs. Your skin and your spine deserve so much better. When I was at Naidex (of all places!), I spent the whole day in my old wheelchair working and actually ended up with a pressure sore. It was a massive wake-up call. I now have a proper pressure-relieving cushion on my new Robooter E60 Pro, and the difference to my comfort and skin is night and day.
• Find what works for you: Trying to balance a tote or shoulder bag while using a chair is a nightmare. It slips off, gets tangled in wheels, or gets in the way when you stand up. I strictly wear a cross-body bag now. It keeps my phone, purse, and essentials right on my lap where they are safe, secure, and easy to reach whether I am seated or on my feet. Just remember to zip your bag up before standing or it’s very annoying when everything falls out!
• Be practical with clothing (when it matters): I know that is laughable coming from me with my love of maxi dresses, but I plan my outfits around where I am going. If I am working and going to be busy, I cannot be thinking about lifting my dress every time I turn (which was a huge issue in my old standing folding electric chair, even if my new one handles it better). So for busy work days, I will wear something that will not touch my wheels, or something sensible if I know I will be tackling steep ramps with my hands full.
  
  However, if I’m on a cruise and it’s celebration evening, I’m putting on whatever length dress I want, tucking it in, picking it up, and fighting with it all night, if that’s what I want to do.

My Advice? Comfort and safety are not luxuries, and adapting your style or gear does not mean compromising your identity. Figure out what makes your day run smoothly so you can focus on living your life.

5. Being Plus Size and an Ambulatory Wheelchair User

We need to talk about something really important here: the nasty overlap between fatphobia and ableism. As a plus-size person, the mental hurdle of getting a wheelchair was twice as high for me.

Society constantly feeds us the vile, toxic narrative that if you are fat and using a mobility aid, you are just “lazy” or “doing it to yourself.” The fear of those comments kept me trapped in my own house, locked in severe pain, forcing myself to walk when I physically couldn’t, just to prove I wasn’t the stereotype people wanted to project onto me.

I want to be crystal clear: you are allowed to use a mobility aid at any size.

I actually have a dedicated post on shopping for wheelchairs as a plus-size person because, honestly, that process is not fun at all. I wrote it specifically so I could make it easier for the next person coming after me.

Using a wheelchair when you are plus size is not a moral failure. It is not “giving up on exercise.” It is accessible healthcare. Choosing to protect your body from agony and exhaustion is an act of self-love, regardless of what clothes size you wear or what internet trolls might say.

And logically? If you cannot move easily because of severe pain, you are naturally going to put on weight. It is completely common sense. But as we have already established, logic and common sense go completely out of the window with the kind of people who cannot grasp the concept of ambulatory wheelchair users in the first place!

A viral post on my own Facebook page, She Might Be Loved, on being an ambulatory wheelchair user. It has over 10,000 likes.

My Advice? Do not let fatphobia steal your mobility. People who leave disgusting comments are projecting their own ignorance and prejudice onto you. Your body deserves comfort, ease, and freedom at the size it is right now.

6. Accessibility Is Still a Nightmare

I do not want to sit here and sugarcoat life as a wheelchair user, or pretend that getting a chair magically fixes every obstacle.

Yes, my chair means I do not have to miss out on life anymore. I can travel, get on trains, head into the London office for work, go to events, and actually enjoy myself without collapsing from pain. But let us be so real for a second: the world is still ridiculously inaccessible, and navigating it in a chair can be exhausting.

Nobody uses a wheelchair because they love being thrown into traffic by terrible pavement cambers. Nobody gets a chair because they enjoy going on a ten-minute detour just to find one bloody drop kerb, or because they love being stuck outside a venue waiting for someone to find the key to a platform lift!

Using a wheelchair stops your body from crashing, but you are still going to run into useless buildings, broken lifts, and crap pavements. It takes planning, patience, and a lot of trial and error.

My Advice? Be prepared for a bit of a learning curve, and give yourself grace when an inaccessible space pisses you off. When you run into a broken lift or a missing ramp, remember that the venue is the problem, not you or your wheelchair.

7. Find Your Community

Being an ambulatory wheelchair user can feel lonely as hell at first. You sit in this strange “in-between” space where you might feel too disabled for the non-disabled world, but worry you are “not disabled enough” to take up space in disabled spaces.

Years ago, following online communities completely changed my life when it came to finding my confidence as a plus-size woman. Seeing people who looked like me living unapologetic, stylish, full lives was transformative. But when I first became disabled? I honestly did not know enough ambulatory wheelchair users. I felt isolated and confused about where I fitted in.

Thankfully, there is now a thriving, brilliant community of ambulatory wheelchair users on Instagram, TikTok, and blogs sharing their everyday lives, outfit ideas, gear reviews, and tips on #AmbulatoryWheelchairUser. We’re louder and easier than ever to find.

Watching other people navigate the world in their chairs, stand up when they need to, and own their space without shame was the exact thing I’ve needed to heal my own internalised ableism.

My Advice? Seek out people who make you feel seen. Surrounding yourself with creators and friends who genuinely “get it” will remind you every single day that you are not alone, and that you deserve to take up space exactly as you are.

I actually loved writing this and I really hope it helps new ambulatory wheelchair users.

I realised I didn’t actually say what an ambulatory wheelchair user is, but you can read that over on the Sociability blog.

Remember, you are disabled enough, and you deserve to take up space.