8 characteristics of life in a wheelchair

Since losing my legs just over a year ago, one of the most common questions I get asked is “How are you coping?” I have learnt that life as a full-time wheelchair-user with disabilities has its benefits as well as its frustrations. In that way, it is no different from life as an able-bodied person. Here are a few of the pros and cons I experience most often, which I think are common to many other people with disabilities.

1) Most people are super nice to me

Even strangers go out of their way to offer me assistance, whether it’s a push up a hill, mounting a curb or alighting from a bus. It also seems to give me some kind of implicit authority – whenever I have been in a group of people that don’t really know me, they immediately fall silent when I start speaking and don’t interrupt me until I have finished.

2) But some people can be offensive

There are other people though, that seem to think I am also mentally handicapped, simply because I am in a wheelchair and have a physical disability. The first time my mum took me to the mall we went into a sports shop to look for wheelchair gloves for me. As soon as we started approaching the salesgirl she looked nervously at me and backed up slightly, and only looked at my mum while she was talking to us. As Emily Ladau’s post on The Mighty reveals, I know I am not the only disabled person to have this issue.

3) Going anywhere requires strategic planning

Inaccessible MyCiti bus stop in Cape Town

An accessible MyCiti bus stop – preceded by two inaccessible curbs.

Before leaving the house I must find out whether the place I am going to is accessible.

Will there be disabled toilet facilities?

Are the doorways wide enough for my wheelchair?

Is the outdoor terrain manageable for my wheels?

Are there accessible transport links or can I arrange a lift with someone?

Is it likely we’ll go on from there to a different venue (in which case repeat all checks)?

Living spontaneously just got a lot more risky.

4) Using the toilet requires much patience

First of all, 90% of the times I have used public disabled toilet facilities I have had to wait for an able-bodied person to finish up in the cubicle. Out of about fourteen able-bodied people I’ve waited for, so far only one has apologised for using the disabled toilet stall. The funny thing is, most of them look extremely surprised to come out and find an actual disabled person waiting for them. Yes, we really do exist. We are not unicorns or tooth fairies or elves. We are living, breathing people with disabilities who need to pee.

Secondly, when you literally don’t have a leg to stand on, pulling up your pants requires impressive skill.

5) The same goes for disabled parking bays

There is a reason disabled parking bays are wider than the average and closer to the entrance. Try assembling and dismantling a wheelchair next to your car and wheeling yourself across a parking lot where people drive above the speed limit and cannot see your wheelchair in their mirrors or over their bonnets.

6) People find it difficult to be angry with me

Maybe it’s just my winning personality, but there have been times where I have done or said something that would have made me angry if I had been the other person involved and yet they haven’t shown any annoyance or anger towards me. I hope that they are not too scared to criticise someone in a wheelchair.

7) Some months I spend more time with my doctors than my friends

Groote Schuur Hospital | darylhb on Instagram

Groote Schuur Hospital

I am sure this will change as more time goes by, but in my first year as a person with disabilities, I have been to the hospital at least twice a month. Usually it has been for routine check-ups or therapy, but there has also been one surgery (with all the pre- and post-care treatment that goes with it). As my body now has to function slightly differently, my vitals will always need to be monitored and physiotherapy, occupational therapy and medication may often be necessary. I have enjoyed learning about my body and my mind, and I am impressed by the physiological backup systems that the human body uses to compensate for what is missing.

8) I know the staff at the local hospital by name

Most of the doctors, nurses and administrative staff that I’ve met have been remarkably kind, friendly, efficient and supportive. There are of course other staff that should not be in the healthcare profession at all, as they seem to hate their jobs and resent their patients for any requests that might be made. The attitude of nursing staff has a profound effect on the wellbeing of their patients, many of whom are bedridden or dependent on the staff. A good nurse can make a patient feel safe, hopeful and confident that their condition is manageable.

Aah, push it (but don’t touch)

It is remarkable how quickly I became possessive of my wheelchair, especially considering that my brain has still not made peace that some of my original limbs are missing. The wheelchair has become an extension of myself and I get irrationally irritated when people touch it.

The rant

My friends and family usually ask me to move if I’m in the way or let me know that they are going to touch my wheelchair, which is ironic, because they are the ones less prone to annoy me. When it comes to strangers, however, I am always caught between rage and disbelief that they have no qualms about pushing me out of their way like an errant trolley in a supermarket. Not to mention the number of times I find able-bodied strangers taking their time in the disabled toilet, which they prefer because it happens to be more “spacious” … how much space does one need to go to the loo?

The humour

Speaking of toilets, a funny thing happened when I visited the disabled cubicle in Heathrow airport before my flight to South Africa. After finishing up I couldn’t find the button to flush the loo. I looked all around and there, right next to the toilet, was a Big Red Button. Now, everyone knows you should push a Big Red Button when you see it, right? So I pushed it, Sugababes-style (or Salt-n-Pepa-style, depending on your age). It wasn’t the flush.

Wheelchair Button Shows Physical Disability And Immobility

Image courtesy of Stuart Miles / FreeDigitalPhotos.net

An ear-splitting siren screamed my error for all of Heathrow to hear and, as I later found out, a bright red light began flashing above the cubicle’s door. Most disabled toilets I come across have an emergency button in case one gets stuck, and I realised that must be what I’d pushed. As I imagined hordes of burly men in uniforms dashing to my rescue from every corner of the airport (I wish), my search for the flush grew ever more urgent, so that I could dispose of what I’d left in the toilet bowl before any of them could see. Eventually I found it, and the solitary airport cleaner who strolled sedately over to the cubicle long after I had finished, reset the emergency button to stop the alarm that had been ringing for a solid five minutes.

The rest of my voyage passed without incident and, thanks to all the medication I was taking at the time, I slept most of the way.

The moral

Although we have wheels, pushing a wheelchair-user out of your way is just as bad as pushing someone who stands on two feet. Hogging our toilets and parking spaces (that’s a different story for a different blog post) is just as bad as someone else parking in your garage or blocking your driveway. I know it sucks that you can’t get that close to the entrance when it’s raining, but try assembling a wheelchair in that rain. So the moral of the story: Be as courteous and respectful to disabled people as you would want us to be towards you, and we’ll do the same.