Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
Everyone.
This is not a debatable topic.
The right to exist isn’t something anyone needs to earn through anything. Especially work.
We have created a world which wrongly seems to only value those who can work, more specifically those who can give money to the economy. Forgetting the value of what it means to be a person, and that this value is something everyone has.
And I just think that’s very sad.
Image if your worked stopped paying you as soon as you earned what someone else decided was enough for you to live on.
You then had to live off your savings until someone else decided that you didn’t have enough money to live on so you should be paid again.
All the while you were still working.
This is the reality for many disabled people.
While if you’re lucky you’re on one of the few disability benefits that aren’t means tested, most are.
Benefits are the only source of income some disabled people have. Even if they are able to work, despite there conditions and the ableism they face in society. They still need the benefits to pay for the disability tax. The increased cost of living in society as a disabled person.
And yet if you what someone else seems is too much money, most if not all of your income is taken from you.
To be clear I don’t believe that anyone should ever have to work for free, volunteering or otherwise. If you choose to do so that’s completely okay, but only if this is a free choice, and for most people I believe that this isn’t the case. Most people seem to find themselves unable to get a job where they can be paid for there work, and so end up working for free, these situations are not a choice as far as I’m concerned. They may have no other options, and so this cannot be considered a free choice, if it’s the only choice you have.
Working for free is never something I will choose to do, but I recognise that I am in a privelleged position to be able to refuse to do that. I am able to get by in life from the benefits that I am entitled to, but so long as I am in that position I will not work for free. Beyond my inital statement, that no one should work for free, which of course also applies to me. I have more personal reasons why I will not work for free.
The biggest reasoning besides believing that I should be paid for my worth like anyone else, for me is energy. It will cost me a lot of energy to hold down even a part time job, that my friends is the joys of being disabled and having fatigue, I cannot affrod to waste the limited physical energy that I have, on something which does not benefit me, and I know that may come off as selfish but I honeslty think it’s fair. On top of this I must also consider the way that me working, will impact the benefits I am on, and the bills that I currently have to pay. Without boring anyone reading this, let’s just say it’s an incredible complex system, that means that only working either bellow or above a certain amount will be of actual benefit to me. As such I can’t just take any role for any amount of money that is offered to me, this further limits the already limited work I am able to do. I have to be smart, physically and finacially.
In a world that doesn’t want me to work, and would be quite happy if I did nothing at all with my life, it’s hard to fight against it at all. I don’t alwayes know if I want to fight against it all, maybe it’s just better not to try, but that’s what they want to me to think, right? And it feels like all I have left is to push against people wanting that.
It’s an uphill battle for everyone to work in the modern world. And lets just say, hills have never been designed for those of us in wheelchairs.
Now, you may be wondering what prompted this post, well let’s just say family pressure. Family pressure without truly understanding what I’m up against. Family pressure without understanding the complex of the situation. Family pressure that has been hypoctical to say the least, from those who had opotunities I never had, and threw them away. It’s fustrating to have people that don’t know your life, believe they do, and try to tell you how to live it. I’m trying and I just wish that was enough.
I have been looking at getting some work, mainly because in all honesty I just want something to do with my time and a little extra income would be nice. But I do not have the ability, the energy, or the opportunity to work a full time job.
So I have to be sure that any work I find must not cost me the benefits I receive, as I need them to ensure all bills are paid. But they don’t make that easy.
Working within the benefits system is just so complicated, that yet again I feel like it isn’t worth what it will cost me, for what I’ll get out. It’s just too much.
It doesn’t make sense really, a system that claims it wants to get people into work, to be so difficult to navigate.
I wish I could just go and work in a shop, that that would be something I would be able to do. That I could just have something to do that would bring me enough income to be self-sufficient. But my disability, society, has to make things so much more complicated for me
I honestly don’t know why I keep trying, and yet I do.
But people who do not know better call me lazy, say I have not tried, when all I have done is try. I’m tired of trying.
I’m tired of not being able to work.
I’m tired of the system being so complicated.
I’m tired of it all being down to me to try, when it is clear others want me to fail, so I will.
I’m just tired.
What jobs have you had?
That’s not strictly true, as I did have a few jobs in university, in situations where they are specifically looking at employing students of the university. There are only things that lasted a day though. I did earn my first and to this day only paycheck which was nice.
But I’ve never really had a job despite trying. Many jobs are inaccessible to me, and people don’t really expect me to work. I tried for awhile to fight against this determine that I would fine something to do. But when your options are already limited, and people are just turning you away because you have no experience as no one will let you try. There’s only so many times you can be told no before you end up listening.
Just remembered that not everybody who doesn’t work doesn’t work because they’ve chosen not to. Whether a person is disabled or not they might want to work they may have tried to work but it is not always that simple.
I can’t just walk into a shop and get a 9-5 to pay the bills. I’ve actually dreamed through having a job like this. A job where I am able to earn my own money and have a role in society is all I really want. But I don’t think it’s in the cars and that makes me sad. 
So money is tight but I have got in very good at making it work by now.
Many people would say that as I am on benefits this is how it should be. Benefits are supposed to buy you the essentials and not keep you comfortable. Those in charge of the benefits system will tell you that this is an intentional setup to motivate people to get into work. But this doesn’t consider people who can’t just go out and look for work to improve their situation.
To prove a point to those who could get a job to provide their income, those of us who can’t are made to suffer.
I would love to work. I have tried to get into work. But an ableist society, or my disabilty, depending on how I’m feeling about myself in the moment, have made this incredibly difficult if not impossible for me to do.
Society doesn’t want disabled people to be included. An how we are judged for being on benefits is a prime example of this. If we are able to brake free from the box that they want us in, to get a job and make money. Most of our benefits are taken from us at a rate that isn’t really proportionate to the cost of living in the world.
The UK does allow us to keep one benefits as disabled people, even if we find employment. But this doesn’t cover the deficit of disability, the disability tax, the reality of being disabled.
Though I started writing this post a few days ago, in relates to the topic I choose to write about when fulfilling yesterdays writing prompt. You can read that here.
It focuses on a specific area of the disability tax, food. Food often costs more money when you’re disabled because of the type of food that is accessible to a disabled.
Often ready-made food is needed over the cheaper ingredients that can be bought by some to make the meal for yourself. For me, this plays out in a reliance on microwave meals and takeaways.
Money is more of a balancing act when you’re disabled. You’re only allowed a small amount of it before you’ll be penalised for having it. Yet the things you need, the help you need; a cleaner, ready-made food, taxis, to name a few that apply to me, cost more money.
It doesn’t really make sense when you think about it that way. But I’m sure many people will tell you that things cost more when you have less money. But it definitely has a different impact, and sometimes a bigger impact when you’re disabled.
I hate that my independence isn’t always affordable.
When you were five, what did you want to be when you grew up?
I’ll be honest I can’t completely remember, but at that age I probably wanted to dance, if I’m honest I still do. For awhile I did wheelchair dancing, but I’ve been unable to find a competitive group for adults, so I haven’t done it in years, and that makes me sad honest.
I love dance.
It’s just my luck that I’d enjoy something so much that doesn’t work in the way people expect when you’re in a wheelchair. Even when I’ve found dancers in wheelchairs, they’ve almost always been in manual wheelchairs and had a lot more movement than me.
Moral of that story is dancing doesn’t really work for me.
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.
Most of the time I keep the lights off in my house. If I don’t all I see is the damage I’ve done to the walls in my chair.
A combination of a house not built for a wheelchair user, and frankly shoddy council work. You can literally wipe the paint off, believe me I have. And because I can’t work a full time job, due to a combination of my disability and the ablesim and inaccessibility of society, I’m unable to do anything about it.
Maybe if I could work, if I could earn money. If I could have more than just enough to live on, things would be different.
But they’re not different.
So I skip the perfect homes, admire the damage and try to feel less alone.
I sometimes wish the things I couldn’t do didn’t bother me, and wonder if I would live a happier or a calmer life if that were true. But they do bother me. The walls in my own home can be difficult for me to look at. The homes that are more than just houses, make it harder. So I don’t look.
In my own house, the lights stay off as much as possible. And I cover what I can, though it’s not all I wish I could, of the walls. And I try to get on with my day and pretend it doesn’t bother me, and hope that one day that’s the truth. Or, you know, I become a millionaire.
Anyone reading this who thinks that people choose to be on benefits can keep their opinion to yourself.
I will probably always rely on benefits, this has something that has taken me a lot of time to come to terms with, and I’m still working on it honestly. I have tried to get a job, but despite my qualifications my disability seems to be a massive barrier that I’m not sure I will ever overcome. Even if I were to get a job there would be certain benefits I would still receive and rely on. But that’s not the point of this post.
I write this post, with a little shame towards the jealousy I feel that fuels it. As I’m unable to get a job, there are many things in life that will remain inaccessible to me.
I will not be able to buy my home.
I will not be able to decorate the home I do have in a way I actually like.
I am unlikely to be able to go on holiday.
Or have any experiences that cost money.
Essentially being unable to work means I will always be on a low income and then have to live by that income.
Though I don’t like it, I understand the economic motivations behind this. The fear would be that if you gave people a comfortable life that they could enjoy on benefits, that no one would want to work. Therefore working is a motivator for a more enjoyable life.
And while I don’t feel that this is the case, even if it were true, it doesn’t consider those who are unable to work. Therefore those who are unable to improve there life in any way.
Now don’t get me wrong, my life isn’t bad. And I am relatively comfortable. But I am frustrated by the fact I am stuck in this life and unable to improve it because working is inaccessible to me.
My Inaccessible Life 