Having a disability can mean that simply going outside your home is more taxing than for non disabled people.
There are different things which take their toll for visible and invisible disabilities but for this blog post I am going to focus on my experience as an electric wheelchair user.
I don’t want this post to put anyone off using a wheelchair, they are great for enabling freedom and independence. Rather I just want people to think about how they treat friends, family and strangers they pass in the street.
It starts before you even leave the house…
There is the planning required before you leave. You have to ensure your chair is charged. I can’t unplug my charger so I have to make sure that it’s unplugged when a carer is here.
You have to think about how you are getting to wherever you’re going. If you want to go by taxi or train you have to book that in advance. You can’t be a spontaneous wheelchair user unless you have a car…
You have to check access in advance and often this isn’t information available online which means you have to contact the venue which can take it’s own toll.
You have to get into your chair and in my case, most of the year get into my wheelchair cosy, which is considerably more involved than just grabbing a coat and walking out. I also have a blanket which gets tucked in around me under the wheelchair cosy as I get so cold.
If you know the area, you have to mentally run through what you know about drop kerbs, pedestrain crossings, shop entrances etc.
If you don’t know the area you have to just wait and see which can be exhausting. You’re constantly looking for drop kerbs and half waiting to get stuck on a pavement and have to retrace your route.
And then there’s illegally parked vehicles blocking pavements or drop kerbs. Wheely bins and recycling boxes left in the way. Yesterday (whilst I was running late for my art class) I had the triple whammy of a blocked dropkerb, a lorry unloading onto the pavement and scaffolding. And I was made to feel shit because I wanted to get past.
You have to make sure other people do not walk into you as they stare at their phone because then they get pissed at you. I have had someone get annoyed with me because my chair was quiet and she didn’t hear me coming. I wonder if she’d like me to wear a bell round my neck?
You get stuck behind people who are weaving all over the path and ignoring your polite excuse mes. As a wheelchair user, you can’t possibly be in a hurry.
And once you’re where you’re going, you have to ask shops to get out the ramp, if they have one, or strangers to reach things off the higher shelves. If you try and go for a coffee, you often have to get help moving chairs or carrying drinks.
If there isn’t an appropriate toilet, you mentally have to pace your fluid intake. If there is an appropriate toilet, you have to go through the process of getting out of your wheelchair and accessories and back in again after.
You have to deal with all the comments from strangers. “Witty” jokes, inapprioriate prying questions, being told how brave you are etc. You have to deal with the “Does s/he take sugar” approach*. You get stared at and pitied. You get utterly unhelpful suggestions to cure your disability. And offers of prayer.
You are crotch and bag height and have to avoid getting hit.
You have the perfect opportuntity to take all your belongings out with you – just load up the back of the chair – but unless you can easily get in and out of your chair, you can’t actually reach any of your stuff.
Obviously you get cold because you are sitting still and you get wet when it rains if, like me, you can’t put on your own wheelchair waterproof. And the rain drips down the chair and down your back and onto your seat…
None of this is to say I don’t like my electric wheelchair, I love it, just be aware of all the mental and emotional energy it takes for me to leave the house. If I say I’d rather meet you for coffee at mine than go out, it’s not because I don’t want to do that interesting thing you suggested, it’s just that sometime the task feels too great.
And this is just the wheelchair related aspects of leaving the house with a disability. And I’ve not even touched on the coming to terms with needing a wheelchair side of things…
*People talking to the person with the wheelchair user about the wheelchair user instead the wheelchair user themselves.