Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
And I had to backdate this post due to having a bad day with my disability yesterday. I literally spent the day crying over something very minor due to my disability. So this seems like a good time to share it.
What bothers you and why?
Take now as I start this post, I am on a bus, and the people I’m with decided to go sit at the back. I know there are supposed to be the better seats on the bus, but I can only sit in one place on the bus, and there were seats near me when we got on, I’d be lying if I said their choice doesn’t bother me. How can it not?
They could have chosen to sit with me, but they didn’t. And every little time someone makes this choice, it reinforces what I think I’ve always known, I’m not more important than the better option.
My disability is an inconvenience to them, to be honest, it is to me as well, but I can’t escape it. They can though, and worse than that, they choose to. I don’t know if it’s made better or worse by the fact I can’t blame them though.
I just wish society made being with me the easier option.
I spend a lot of time just scrolling on various internet platforms, and if there’s one thing I’ve learnt, it’s that wealth is relative.
Seeing people complain about the price of things they’ve inquired about, that I don’t even have the money to look into, is a wild experience. The price of getting a swimming pool in your garden has gone up, oh I feel so bad for you.
Sorry, I know this is a very cynical post. And while I’m a strong believer in people’s right to do whatever they want with their money, sometimes the reality of this is just difficult to witness.
I think it’s because I know that society is going to keep me poor. Don’t get me wrong I live comfortably, but I am never going to have the kind of disposable money needed for a pool. I know those that do have the money have worked hard for it, and they deserve it. But I’m not even getting the chance to work hard to change my situation. And sometimes that just gets to me.
I know compared to some I have a lot of money, but compared to others I know, I have nothing. And I feel like I’m constantly torn between it could be worse and why isn’t it better.
I don’t know where I was really going with this post, as it goes against what I believe to differ that people couldn’t talk about there problems just because it could be worse. I guess I’m just airing my own problems and that’s that.
If it wasn’t obvious, if I win the lottery, which I do not play, I will be getting a pool, or a jacuzzi.
Someone made a comment on how benefits are spent, because they have a job and the person they were talking to does not. You know the classic, you dont work, I do, and thats what you’re spending my money on. I am one of the reasons this person isn’t working, so I feel guilty.
They then said they would like my life, to not have to work, and to sit doing nothing all day. I made the point that they would then have to take my disability from me. And I would rather have their job than my disability, so I could do what I want with my own house.
I’m sure you know by now you might have figured that this person is someone close to me, someone who should have known better. And yet they still think disabled people are playing the system.
I don’t know how many times I need to say it to have someone believe me. But I really want to work, and I don’t want to need to rely on benefits. To suggest otherwise is a harmful assumption, and is just unfair. To judge people on benefits for how they spend their money is cruel, to say the least.
If you want to have the benefits, and the perks, you also have to take the bad stuff, the reality.
You have to take the fact that you will never be able to help people as much as they help you. You will always need them more than they need you. Your control is conditional. Being viewed as an adult is conditional. You’re only a person when they want you to be.
Being disabled or being unable to work, is not a ride to an easy life. In fact the reality is the opposite. And I hope when you have to deal with this yourself, because disability is a when not an if, that no one makes you feel the way I was made to feel.
Please excuse this one, its a little more rant like than thought out. I don’t really have the energy for thought out today.
My sister just drove my chair into my bed which then hit my wall because my bed is also on wheels. A wall that is very poorly painted as I live in a council house. A wall which is damaged again.
It keeps happening.
The price of living in a wheelchair in a flat not properly designed for someone in a wheelchair is constant damage of the building in various ways. I know this. I’ve been a wheelchair user my whole life. And yet it still frustrates me.
I will get over the damage I know I will, I always do. I know that it’s not really important. But right now I’m angry with myself for being disabled. All I can think is this damage wouldn’t be happening if I wasn’t disabled. The internalised ableism is winning.
But I know in reality that the problem is the inaccessibility of housing for people in wheelchairs like myself. That without a lot of money, housing will always be inaccessible to me and I will always end up damaging it in one way or another.
I just wish it didn’t upset me every time. When I know it’s an inevitability I can do nothing about.
Name your top three pet peeves.
1. People that disguise ableism, sexism, racism etc as an “opinion”.
2. People that are continuously late, with no reasoning behind it, for a job they are paid to do.
3. People that lie, particularly about inconsequential lies, where the truth wouldn’t actually be a problem.
These are all based on real experiences I have with my own careers. I probably have more things that annoy me to be honest. However given the conversation I had today with one of my careers, who let’s just say had some very ableist things to say, I thought these fit well.
Just read you audience a bit more please.
As I write this I am at my friend’s. It is about 9pm, and my dad just called me to tell me they think I should go home. He says that it’s other people he’s worried about and not me and my ability, but it honestly doesn’t feel that way.
When I was out the other night with my sister he didn’t have this problem, and I was out a lot later. But then I wasn’t alone, so someone he views as more responsible was there.
I know he worries. But I honestly don’t think this is fair anymore.
I’m an adult. I am not less of an adult because I’m disabled. His worry for me is actually ableism.
Don’t worry I will get myself home.
What’s the first impression you want to give people?
And this is how I know that the internalised ableism is definitely kicking my butt at the minute.
I feel like it’s always there but sometimes it’s stronger than others. Bad news and failing things often makes it stronger, so those who read my last post likely know I am feeling this way.
The truth is I will never be seen as normal, Logically, I know I need to stop trying to be seen that way, because the truth is, I’m always going to fail. But knowing I should think a certain way, and actually thinking that way are two different things.
I know that being normal is overrated, but the world is so ableist, so inaccessible, so hard. That it’s incredibly difficult for me to not wish for this sometimes.
Hoping these feelings pass soon and I can set a new goal and move on to something that I can succeed at. I want my needs to be more than my disability. I want to be able to support myself in someway. And if I’m lucky, maybe make a change that matters in the world.
How often do you walk or run?
Sometimes questions are phrased poorly when you’re disabled. I am a full time wheelchair user, I have never walked and will never walk a day in my life.
Therefore the only way I can answer this question is to look at it from different points of view and that changes the answer I will give.
If you’re asking how often I exercise, which could be what this question means. Then many of the tasks that I have to do on a daily basis, rolling, lifting my bag etc. can be considered exercise. Intentionally exercise I do rarely and if ever, I get tired enough just living.
Another way you could answer this question is by looking at how often I get out of house. And honestly my girls are a massive motivator for that. They are walked daily when the weather permits. When they are not with me, I don’t usually like to go out without having somewhere to go, but I might take a longer journey home if the weather is nice.
I hope this answers the question, but I guess that’s up to whoever is redding this to decide. 2
Describe your life in an alternate universe.
My instant reaction is to describe the non disabled version of myself. As if this is all I would be in an alternative universe. But really other than a few physical attributes which would aid in changing other things when I really think about it. What I would really be different about me is that I would be more confident, more outgoing. Actually achieving the things I want and not being stopped or slowed down by ableism and inaccessibility.
My Inaccessible Life 