Almost a year ago my physiotherapist suggested I get a wheelchair. I was mortified. Just as I had been the year before that when I first used crutches and when I had to use a walking stick before that. She suggested I purchase one if I could afford it as the NHS would likely provide a manual one and the wait was long and I had a holiday coming up where I would definitely need it. I reluctantly agreed and began the search for a wheelchair. At first, I thought I might hire one, after all, it was only for a couple of weeks but right from the start of my reluctant agreement to use one, I knew what I wanted or should I say what I didn’t want and the wheelchairs available to hire did not suit.
I knew I didn’t want to lose my independence. I didn’t want to be pushed around. I knew I needed power for days when my collarbone was playing up, yet I needed self-propelled wheels in order to still be able to move if for some reason the power went. It needed to be relatively slimline so it could be folded and lifted into the car and used indoors/disabled toilets etc on days when walking was out of the question and above all else it needed to be in good condition for when I sold it on. You see I had no intention of using the wheelchair permanently or even regularly. It was temporary stop-gap assistance so I wouldn’t have to be a burden to my family on holiday, always needing to rest and unable to accompany them around the attractions etc.
After trawling the internet I found the perfect chair on eBay that ticked all the boxes and was delivered to my door by a very kind man. We thought it might be fun to name my new wheels, in order to feel more attached to them I guess (excuse the pun). We put it to the public to vote with a few ideas and ‘Wilma’ was born! Wilma was everything I needed. Old and tired but still full of life. That 10-day holiday would have been impossible without her; I realised soon after we left home. When we returned I refused to use her and was all set for selling her but every time I left the house full of great intentions of walking with crutches I would end up crying in pain, dosed up to the eyeballs and wiped out for days.
Being housebound was depressing me, literally. I knew I had the answer right there in Wilma. It was hard at first, heck it’s hard now! I live in the least accessible house, on the least accessible road (a hill) and I don’t drive. If the weather is bad I can’t go out. If I am fatigued I can’t go out. If I can’t find someone to come with me ‘just in case’ I can’t go out. If someone offers me a lift I usually have to decline because either Wilma won’t fit or they can’t lift her (she still weighs 18kg as a ‘lightweight’ chair with motorised wheels) When my husband is not at work he will drive and sometimes I sit in the car, arms folded like a toddler, refusing to use Wilma, insisting I’ll be fine even though I know I won’t. Anxiety kicking in that there won’t be accessibility, it will be too busy, I won’t have the energy it takes to navigate a public place in a wheelchair and the biggest one, dealing with those that don’t understand why I need a wheelchair.
I don’t have the time to explain to everyone I meet that whilst I can actually stand and walk, standing still even as little as a few seconds on bad days can cause my spine/hips/knees to react in ways they shouldn’t, causing pain for days or weeks. I can walk for a short distance only, somedays further than others, before pain shoots through my body causing me to shake, cry and eventually collapse. On better days, I can use crutches to get me from a to b as long as there is seating somewhere at both points a and b. At home, I don’t use the wheelchair. I sometimes need my walking stick but there are places to sit at every turn and lots of ways to steady myself. When it comes to stairs, I can actually handle them quite well. Which is a good job as I have so many of them! The complicated bit is that I can’t sit for long periods either. I mean I can sit for longer than I can stand but sitting for too long can have an equally damning effect on my spine/hips/knees. The answer to this when in the wheelchair is to have standing breaks. Getting out of the chair regularly is imperative to avoid pain and damage to joints. But imagine the surprise of people who presumed the lady in the wheelchair couldn’t walk as the said lady stands up and moves around.
Reactions differ from shock to disgust and everything in between. Some withdraw any sympathy they had for me immediately, others just look confused, some get angry as though they have been duped in some way. I have seen terrible attitudes of people towards the chronically ill community online. All the things that people want to say in person, they freely say online. I’ve seen comments claiming people using powerchairs/scooters are lazy, fat, job dodgers, benefit scammers, attention seekers and worse. A lot of this appears to stem from the fact that many of us are overweight (because we are unable to exercise due to chronic pain) as well as the fact that we are actually physically capable of standing and that our conditions vary day to day in how much we can actually achieve by way of mobility.
The price to pay for having a condition that makes you a ‘part-time’ powerchair/scooter’ user is that people don’t believe you. This is so much the case that when Wilma and I are out and about I will regularly find a disabled toilet to get up and stretch rather than in public just to avoid the stares, glares and whispers. I fear this is worse for those with mobility scooters than wheelchairs. I saw a post on social media this week about lack of access at a retail park and the comments from the general public made me want to never leave the house again. Comments laughing at scooter users, accusing them of being fraudulent about their needs. Some suggested that if they were truly disabled they would be in a wheelchair. Scooters are cheaper than electric wheelchairs sometimes by thousands of pounds and scooter users often choose them as an alternative to a wheelchair which they see as a more permanent solution to mobility needs or because they can be used where the owner does not drive. Personally, I think it is highly commendable to want to maintain as much of your physical mobility for as long as possible by only using a scooter for long distances, parking up outside and walking into buildings.
I am not saying that there has never been a fraudulent benefit case or that everyone who has ever used a scooter needed one but I just can’t imagine anyone wanting to. I know how hard it is to be reliant on a powered wheelchair to leave the house. I know first hand how energy sapping it is just having to forward think my every move, constantly assessing access, hazard perception and spatial awareness. Having to strain to hear people because they are facing away from you and won’t bend to your level or are talking over you, having to stop to change speed but being in a flow of pedestrians means you have to pull in to stop to change your speed and not being able to enter some shops/bars/restaurants or reach countertops or shelves. Having people literally, walk into you because no one ever looks down. Having to constantly apologise…I’m sorry…can I just…excuse me…sorry can I just get through…so sorry…no don’t worry it’s not your fault…no I can move by my self if there is space…thank you but I’m fine, sorry, sorry, sorry, sorry, sorry. It is truly exhausting. I am planning my first night out in Wilma this weekend and I am incredibly anxious. All of the above is bound to be even more difficult in an environment that is crowded with people drinking. I’ll let you know how it goes. It may be Wilma and I’s first AND last evening out together.
In conclusion, in my opinion, anyone suggesting that users are lazy really should spend a day reliant on wheels in a busy crowd. You’ll soon realise how exhausting it actually is. In the meantime can I suggest that we don’t judge people on issues we know nothing about? We don’t know how hard it was for that person to get out of bed today let alone out of the house. We should be applauding people for making the effort not booing them for being lazy. We should be nice, people. It’s so much more pleasant than hating!
Thanks for reading.
As you were…