10 Things I Learnt In My First 20 Months As A Wheelchair User
In March 2015, my genetic condition (Ehlers-Danlos Syndrome) got the better of me and I bought my first manual wheelchair so I could go out more. In June 2016, I acquired a powerchair and I've been zooming around ever since. In this time I've learnt a lot about my own assumptions, public access, and even more about other people's perceptions...
1. Sometimes the thing that helps you can also be the thing that frustrates you.
The manual chair was comfy, collapsible, customisable - and it made me incredibly frustrated, which is something I couldn't have foreseen. I struggled to self-propel even on very easy surfaces, due to injuries and chronic fatigue, and was therefore reliant on other people to get me around. Although going out more was the aim of getting the wheelchair, it still felt a lot like a step backwards to me despite me being frequently housebound without it. Similarly, using my powerchair is how I manage to leave the house most days, but something like one broken lift on the accessible route into London can throw a spanner in the works. When this happens, I get frustrated that I'm using my wheelchair instead of struggling on crutches, but I know that the key there is the "struggle". The wheelchair is what enables me to leave the house more than twice a week and not need so much recovery time. I was becoming a seriously depressed housebound grouch before I got my wheels, and it's the best money I ever spent and the best thing I could have done for both my mental and physical health. Yes this list is going to talk about negatives (or learning curves...) but please read it with that fact in mind.
Now here's a list-within-a-list.
Top 5 Annoyances I Have Found Since Becoming A Wheelchair User:
1. Buggies/suitcases/trolleys on buses in the wheelchair space
2. People leaning on my wheelchair (strangers, even!)
3. Being cigarette-in-hand level to people walking nearby
4. Tired jokes about driving licenses and speeding limits
5. Having to phone up for tickets to everything instead of buying online like everyone else.
2. Being in control is important to me.
I acquired my manual wheelchair a week before my partner and I went on a short break to Oslo. We'd only been going out about 5 months, and he was very excited about being able to spend whole days out with me without pain or fatigue cutting things short, or obligatory "recovery days". After 4 days in Norway (during which we managed to do an awful lot that I wouldn't have been able to do otherwise), he had discovered another side to me, called the Bossy Chariot Bitch. After approximately 28 years of controlling my own movement and direction, it was quite difficult to relinquish that control to someone else. Over the next months I became a little better at not pointing out every bump, tree root and un-dropped kerb that came our way. After all, it's probably not wise to piss off the person who's in charge of your trajectory.
3. Wheelchair user with a carer? Expect to be patronised.
It was quite shocking the first time I was spoken about in the third person, as if my brains or ears didn't work properly, not my legs. "Can she walk at all?" asked the security officer at the airport, to my boyfriend. "Yes, I can" snarled I, reaching for my crutches.
Luckily there haven't been too many moments like that; just the occasional thing like change being given to whoever I'm with, despite me handing over the cash, as if I'm a small child who was allowed to "pay" as a treat - or people automatically looking to my boyfriend or friend when they see me approach them. These are small and unintentional microaggressions, but they still hurt. It's a wheelchair, not an invisibility cloak!
4. Offers of help are not always helpful.
Let me say this once, and once only: DO NOT PUSH PEOPLE'S WHEELCHAIRS WITHOUT EXPRESS PERMISSION.
When I used the manual chair this wasn't a problem because there was usually someone behind it delegated to do the pushing (so no room for strangers to intervene), but since going over to the powerchair I can now go out independently, and unfortunately, the powerchair still has handles... "Can I help you with that step?" is what I hear a lot when I'm waiting for the bus driver to release the ramp. Sometimes my polite "no thanks" doesn't reach the person offering help, and they'll attempt to shove 200kg of fat-chick-plus-machine into the side of a bus. This risks injury to both of us, and especially to the wheelchair which is not meant to be manhandled like that!
5. I had to relearn how to wear clothes.
The fashion plus side of being a wheelchair user is now I can wear pretty much whichever shoes I want because I don't have to try and walk in them. The downside is, most other things fit badly when you're sitting down all the time. Trousers and jeans dig in and leave seam marks, tops ride or curl up, skirts are far shorter, and don't even bother with shorts. When you stumble across a piece of clothing that flatters you AND stays in place, you want to buy it in bulk. I'm quite a big fan of bodysuits for the no-riding-up reason. Also it turns out when you're not using your legs and feet, they get Very Cold Indeed. Leggings under everything half the year is recommended.
I don't like rolling around with my bag on my lap, and it's so painful to twist around to reach behind me, so I decided to bring the bum-bag back for summers, as well as having kids' backpacks on the arms of my chair for "saddle-bags".
6. "Wheelchair Accessible" often means "we tested this with a small transport chair"...
I sometimes wonder who designed certain "wheelchair accessible" toilets. I've encountered them with doors too heavy to open, doors that open inwards (thus vastly reducing the amount of space inside), ones with bins on the side walls (so turning the chair around is impossible), ones which are being used to store anything from cleaning equipment to other patrons' mobility aids (!), and my personal fave - one where the size of the sink made it impossible to get a wheelchair inside in the first place (take a bow, Duke Of York's theatre). I know space can be an issue, but so can getting bladder infections from having to hold it in because no one thought to accommodate your needs...
Similarly, access on transport frequently seems to have been tested using a manual chair (sans chair user). I tried to get on a tube at London Bridge station in the summer, now proudly proclaiming itself to be level-access. What I was confronted with was a 4 inch gap leading to a 4 inch high step onto the train, which I was not willing to risk. "Sorry, we don't have ramps" said the station attendant, "level-access stations don't need them". That would have been fine, if the station had actually had level access. I'm not a huge wuss- my local accessible station has a small gap then a 3 inch step to get the chair onto the train - but I know when something isn't worth the risk to myself or my powerchair!
7. ...and that's if access was ever taken into account in the first place!
Next time you go to a shop (which isn't a supermarket - those have their own "most of the stuff I want is out of reach and I forgot my grabber" issues), check the space between the rows of clothing, or the display tables. My powerchair is just under 21 inches wide, and that's the narrowest adult chair I could find. A lot of the time when I'm out shopping I end up giving up due to the obstacle course, or the looks I'm getting for attempting it from from the staff (because it's easier to stare stonily than to help, right?). Restaurants and cafés can be just as bad, with no provision made for wheelchair suitable spaces, or even independent access - for example my local McDonalds recently invested in a whole bunch of built-in iPads for kids to play on while they ate, but still doesn't have automatic doors or any seating suitable for a wheelchair.
And if you want to shop outside of chain stores? Often you're out of luck there as the required "reasonable adjustments" for disabled customers under the Equality Act haven't been made. No independent coffee shop in my area has wheelchair access, many independents shops, too, have steps up with no ramp, and even my beloved Moomin shop in Covent Garden is up a flight of stairs with no lift!
And don't get me started on trying to find an NHS dentist with wheelchair access...
8. So many people are firm believers in the disability binary.
If you're not familiar with it, the disability binary is the concept that disabled people (particularly those who use wheelchairs) must be unable to walk. It's this kind of thinking that leads to "hilarious" memes involving intrusive photographs of wheelchair users standing up at concerts, to reach things in shops etc. It's also what keeps me, and many other wheelchair users from doing those things, even though we are physically able to. Misunderstanding of the complexity of disability is undoubtedly what leads to a lot of the calls made to the "shop a scrounger" benefits hotlines - and even if the DWP have on record that someone can walk a small distance unaided, the report will trigger a reassessment thus causing major stress and disruption for the wheelchair user who couldn't reach the doorbell without standing up. It's little wonder we stay seated.
On the flip side, it can be quite hilarious when people's perceptions are challenged, and very illuminating into how deep the binary concept goes. The stares garnered when moving from wheelchair to armchair in a coffee shop are enough to make one want to cry out "It's a miracle!". A few months ago I was waiting for my bus, and without thinking I stretched a leg out to alleviate knee cramp (which will happen when you sit down for long periods of time). This was apparently so astounding to a driver on the other side of the road that not only did he gawp at me, but he did for so long that he accidentally rear-ended the car in front of him! Remember folks, be roadsafe and only stretch away from traffic.
9. There is nothing worse than watching someone handle your wheelchair badly.
Because I'd been housebound for so long, when I got my powerchair I suddenly got very itchy feet/wheels. One of the first things I did was take myself to Madrid for four days, which was a nice crash course (without crashes!) in how to use a powerchair, how to do slightly-too-high kerbs, how cobblestones mean holding onto my boobs with my free arm etc.
It also taught me that there is nothing scarier than turning your very expensive piece of mobility equipment over to some strangers to put on a plane. At the airport in London the ground crew explained what they would do (open the powerchair up, disconnect a wire). Fine. In Madrid however, I was dumped back in Baggage Reclaim with a non-reconnected wheelchair that I couldn't open myself and the only thing the "assistance crew" member did was to remove the manual chair I was sitting in! (My thanks to the three police officers who helped me to reconnect my wheelchair and start my holiday!)
The romantic getaway to Vienna was even scarier, because I could see out of the window where they were loading my chair (my legs, my life, my irreplaceable freedom!) onto the plane! A few minutes before that I'd been helped out of the chair at the boarding gate, and immediately a ground crew member had tried to push it away in drive mode, forcing the wheels. That prompted me, for my final flight this year, to make an "unmissable" sign to hang on the powerchair, explaining how to put the chair into freewheel mode, and that this must be done before attempting to manually push it. Upon arrival back home I was once again looking out the window, as three people lifted/pulled my chair off a raised platform (Scream!) then tried for two whole minutes to get it to move (before one of them finally read the bright red laminated sign in 50pt characters.
Also after the episode in Madrid, I invested in an Airsafe Plug. Essential for not having strangers open up your powerchair and yank out random wires. (It goes in the charging slot and means that the controls won't activate.)