Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
What does your ideal home look like?
Honestly, this is this is the reality of being disabled for a lot of people. Most of us want what non-disabled people have and take for granted. A home that I can live in which is completely accessible to me.
An open-planned home, with flexible furniture. And all the accessibility equipment I need through out.
Sometimes you’ve got to do what you can in a situation. Even if that’s sleeping in your chair.
Okay so there were a few times I’ve worn shoes over the last 10 years. But I did stop wearing shoes with any kind of regularity after an operation I had after high school, so that was 11 years ago. There was the odd occasion where I was made to wear shoes in order to appear “professional”.
But I haven’t willingly or consistently worn shoes, for longer than I’ve had Bella, who is 11 thus years. And that’s all about to change if these shoes are able to keep my feet on my footplates tomorrow.
My footplates were recently quite dramatically highered, becauae apparently they were in a very wrong position for me for a few years. However no one decided to tell me or my body that. To avoid going straight to straps I’m starting with just adding some grip in the form of shoes, or shoe like slippers, and seeing if that solves the problem.
Technically I’m starting with slippers because you’ve got to start somewhere, right? And they won’t change the position of my feet, this is particularly scary for me on my right foot an ankle which was wrongly placed in the cast after that surgery and so is now no longer straight.
This feels like a dramatic change to my life, and the way I relate to my disability. But hopefully it works and ends up being good. And at least I won’t go through shoes, or slippers, that quickly, as they won’t touch the floor.
Wish me luck.
Sometimes you’ve got to try different, right?
Check out my brief Tiktok about it here – if you like.
Now I was using this as a point in a tiktok video. And though I decided not to use it I did share the video after.
It got me thinking about how much easier the world would be for me, for a lot of people, if they were just thought about when things were created. How much easier we could make the world now if we thought about people and what they need when things were upgraded.
People don’t want to do that though, and many have convinced themselves it’s impossible to even try. We still have a long way to go to have a truly accessible world, and that’s a little sad sometimes.
It always surprises me, but it probably shouldn’t anymore, that public transport is generally only designed for one person in a wheelchair to use at a time. We don’t in fact all know each other and coordinate when we need to do things together, contrary to popular belief.
As I write this I’m on a bus on the way to pick up some medication for a family member, I like to be useful and it’s not often I can do that without actually being in the way, but today happens to be one of those days.
There was someone else that wanted to get on the bus in a wheelchair, but they couldn’t because I’m already on it. I feel bad as if somewhere it’s my fault, even though logically I know that it isn’t because I didn’t design the buses. But can you imagine if the roles were reversed?
If public transport was only designed to take one non- disabled person at a time? How annoyed would they be at having to wait for a bus with a space on all the time?
But it doesn’t matter that disabled people have to wait. It doesn’t matter that wheelchair users can never go out with other friends in wheelchairs when they need to use public transport. We almost always have to meet them at the place we’re going. We don’t get the full experince.
This is made even worse when you realise that society actually pushes disabled people together. They think it would be easier for us all to be friends at a young age, because no one who isn’t disabled should have to be friends with someone who is. But then don’t create a society where you’re actually able to do things as friends. It’s just weird to me.
It’s a common thing when you’re me. I don’t know what’s worse knowing the cause and not knowing there isn’t a fix or knowing the cause and knowing the fix but not being able to fix it.
It’s got to be knowing there is a way to fix it and not being able to do it yourself.
I’m waiting for the cushion to be fixed on my chair, it can take up to 6 months just for the appointment, who knows how long to actually fix it. So that’s (at least) 6 months of extra discomfort, often and eventual pain, with a solution I’m stuck waiting for.
Don’t get me wrong I know I’m luckier than some, to get this eventually and for free. But its still hard.
Discomfort can be more difficult than pain for me. The pain I am used to, it’s my normal. But the discomfort is new, and I don’t know how to deal with that. It’s going to be rough
If someone stops by briefly it’s not often me they see. They come and see the person I live with and I don’t expect them to even talk to me.
It takes so long for me to get out of the house and so many people are impatient for me to leave the house, it’s not worth me even trying when they are here quickly.
This means I’m often left out, simply because people don’t want to take the time to include me. If I know in advance I can be more prepared for them to come, but just turning up isn’t helpful if you actually want to see me and aren’t willing to take time.
Now I want to say that I will be doing various posts related to Disability Pride over this July which is Disability Pride Month. And I will do my best to share information, but as always I make no promises.
But for now, let’s start with the flag. All of the colours have individual meanings so let’s go through them.
As I’ve said I will try to post more about Disability Pride this month. But plans can sometimes be difficult, so don’t blame me if I fail.
♿️HAPPY DISABILITY PRIDE♿️
As I write this post I am still on the train. It is worth noting that the buggy was moved so I could get in before the photo was taken. Before this, it was completely in the wheelchair space. The owner of the buggy is nowhere to be seen.
I know that children and buggies have every right to take up space, but please remember your buggies are optional, my wheelchair is not.
It’s one thing to leave your buggy in the wheelchair space with you there. But to leave it there while you go into another area of the train is even more surprising to me. Why would you do it? Why would you leave your belongings unattended like that? Is being in first class really that important to you?
While the buggy has been moved out of the area, it is now blocking the isle and other passengers. It is not as easy for me to move as it is for you to not leave you things in the way in the first place.
I’m getting my hair done over the coming days, and I’m worried.
I’m worried because I can’t follow the guidance exactly how I would like to. But I’ve tried my best. I can only wash my hair on certain days in the week and in the evening, due to my carers. But this isn’t something that someone would know about me without me saying. And don’t know how I’m supposed to bring that up to people who don’t me.
When you need help to do things, doing things when you want isn’t always an option. But I do my best.
I have to deal with the anxiety of this alongside the anxiety of having someone new cut my hair. This is the first time I will be paying for someone to come to my home to do it. As the family members that usually do it are unable to do it right now, or ignoring me.
I don’t want to risk going to a standard hairdresser as I’ve done this before and it’s been difficult due to accessibility.
Once I rang a hairdresser to ask if they were accessible, and they assured me that they were. However, when I got there, there was a step outside the building. I questioned this and their answer was that once so was inside the place was accessible. I pointed out that I couldn’t get inside due to the step. Their solution was to give me a free coupon for that Salon, the one I couldn’t get in.
So I don’t want to risk that again. This is why I’m using a mobile hairdresser. But it doesn’t come without concern for me, nothing seems to come without concern.
I have told them I am in a wheelchair, but I worry that they will just forget that. That they will say they can’t do it because I’m in a chair, or for some other reason I haven’t thought of.
Logically I’m sure it’ll be fine, but I’m still worried.
Anxiety sucks.
And I just wish that I was able to go into a regular hairdresser and get it done somewhere where I wouldn’t be a problem.
It’s difficult when dealing with a world that’s so inaccessible to you, to not blame yourself for the reason things are so difficult. Logically I know this is not my fault, but emotionally which is the side that always seems to win, its so much more difficult to deal with.
But getting my hair done seems worth it. After it’s done I just feel like I can breathe, if that even makes sense.
All this said, wish me luck for tomorrow. I honestly feel like I need it.
My Inaccessible Life 