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
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
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.