I think it would be interesting to talk about going out as someone in a wheelchair. Although seemingly a simple and ordinary thing, it is not always as easy as people might realise. As with any journey or evening out there is a lot of planning involved, but for someone with a condition like Duchenne even more goes into just getting ready and leaving the house, as well as actually getting into and navigating around your destination. It’s never a case of just getting out of bed, throwing on clothes and heading out for instance. There are many more complexities involved and I think it is useful to explain them so that they can be understood more.
There are a lot of questions to be answered when it comes to going out that most people won’t see as particularly problematic. Is the venue accessible? What is the weather going to be like? How far away can you park? Are there suitable toileting facilities? These are just a few examples which are much more significant to plans for a wheelchair user. A question as simple as ‘can I get in?’ can turn out to be a nightmare, especially if, for example, an entrance isn’t quite accessible so you need to drive around outside in pouring rain and freezing wind to reach a rarely used side door that your chair can get through. The terrain is also something to be considered. Is the place your going too hilly or how uneven is the pavement you’re using? Furthermore, there is some anxiety that comes with going out as well. Will I encounter a situation where I feel embarrassed? Many of these problems can add up to make the entire experience of going out much more daunting.
For me, the main things that are problematic are being able to get in to a place and going to the toilet. Being able to access a venue is certainly one of my foremost concerns but currently, the toilet question is more significant as it’s about how long can I go without needing it because most places still don’t adequately cater to my needs. This has definitely restricted what I have been able to do for the past few years, and affected my participation of events with family, friends and university. This isn’t to say I do not enjoy going out but means that there is much less chance of spontaneity when it comes to doing things. You really have to think about things well in advance to make sure you can have an easy and enjoyable experience.
The above issues make going out difficult enough for disabled people already, without the added pressure of potential mistreatment by some venues. There have been a number of instances in the news recently that demonstrate that certain venues and places still treat disabled people with some disdain, and it is important that this changes as it will give people more confidence to take part and contribute more. I have also spoken before about accessibility, which still remains a significant problem.