The most difficult thing about being disabled, in my opinion at least, is not ableism. It’s not the strange looks you get in the street, or having to navigate a world physically not built to accommodate you. It’s not even the symptoms of my condition. No, by far the biggest downside to being disabled is the physical and emotional labour that stems from disability.
Very few things are simple and straightforward when you’re disabled. Visiting anywhere new is a nightmare, with disabled people usually needing to visit special websites or contact businesses directly in order to obtain essential access information, instead of simply being able to turn up and assume they can get in the building. Quite often accessible services require booking in advance, removing the ability to be spontaneous, particularly when it comes to travel.
Even as a pedestrian I experience issues that simply wouldn’t apply to me were I not disabled. I frequently end up back-tracking or taking detours when roaming the streets simply because someone has parked their vehicle badly or roadworks block the path and leave no accessible alternative for me to use.
This was, of course, less of a problem for me when I couldn’t safely and independently leave the house for well over a month because the company responsible for repairing my wheelchair were thoroughly unhelpful. I suspect it would have taken longer had I not been following up with them weekly when I received nothing in return for over £300 spent on replacement parts.
Unfortunately, travel isn’t the only time a disabled person needs to do more work to get the same results as an able-bodied person. Recently I spent almost an entire week going back and forth with the hospital who decided to book my MRI scan in a mobile van with no step-free access and refused to change it, as a wheelchair user needing to access healthcare was apparently an unexpected eventuality. This is the second time I’ve had to wrangle with the hospital about booking scans in venues I could actually access.
On an even more regular basis is the arduous nature of performing the simple task of ordering my monthly prescriptions. The time taken from placing the order to receiving my medication often exceeds a week, and almost every month there is a problem. In fact, I realise that as I write this I cannot actually remember the last time I ordered my prescriptions and received all of them within the “maximum” wait time of four working days, without any issues. Most recently I had to argue with my GP surgery to get them to prescribe the more expensive version of one of my tablets as the cheaper version I usually use was out of stock. They wanted me to have something which I react negatively to, as is recorded in my medical notes, and seemed surprised when I objected.
There are other battles too like trying to get financial support to partially cover the additional costs incurred by being disabled, or getting doctors to take my ill health seriously, that simply add to the burden.
Frankly, I face a battle of some kind almost every day, and not the battles I expected like pain, invasive medical procedures, or being viewed with disdain. Worse still, the battles I’ve described above are completely avoidable. I shouldn’t need to question whether a venue is accessible when the law states it should be. I shouldn’t need to ask for special permission to get on a train. I shouldn’t need to go around extra obstacles that only exist because of someone else’s ignorance. I shouldn’t need to constantly argue with businesses and administrators to be able to access healthcare or mobility aids. What to an outsider probably looks like a minor inconvenience is just one instance in a long chain of negative events. It’s endless.
When all is said and done, I must admit to finding it rather ironic that the icing on the multi-tiered cake of unnecessary labour I’m made to perform is this simple fact; undertaking all of this extra work renders me even more disabled than I already am.
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