Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
What’s your favorite thing to cook?
I love food. But I don’t cook.
I love potato, seasoning and spices. But I can’t cook.
So if you’re asking what my favourite thing to cook is, that’s almost a mute question.
But that doesn’t mean I don’t get to love food.
Remember you don’t have to be able to cook to enjoy food.
What would you do if you won the lottery?
I think it’s something that everyone talks about from time to time. Even when you know it’s never going to happen, it’s good to dream.
But I don’t even play the lottery, I don’t really have the money to waste, so I’m never going to win am I.
But let’s still give the question a go.
I used to say that I would by an accessible camper van. So I could live somewhere that was completely accessible to me, travel where I wanted, and see family. So that I could stay somewhere else without having to be uncomfortable. I even used to say that I would pay for carers to be on call 24/7 and follow me around in there own camper van.
And while this idea is nice, and maybe something I would do if I won a lot of money, I don’t think it’s where I would start if I won the lottery any more.
I would start with doing up the flat I live in now. Making it look nice and a little more lived in than it is.
I would then buy some more up to date tech. A good computer, a good phone things like that.
I would then stock up the house, get some better appliances than I currently have. I would make sure rent and bills are paid well in advance if possible so I wouldn’t need to worry about them.
Then a holiday, abroad. Somewhere hot maybe, or somewhere I’ve always wanted to go, Las Vagas, maybe. Or I’ve always wanted to go on a cruise, that would be fun. Or even just to say somewhere in a posh hotel.
I would also love to try a spa, get a new tattoo, get my hair done professionally. Those types of things. Maybe I could even get a jacuzzi in the garden with a hoist so I could use it.
Maybe then a car, and learn to drive.
What I find interesting about what I would do if I won the lottery, is I would just live a more accessible life. I would just like to explore the world a bit L, and live in little more comfort.
I don’t think that makes me different from many people. It’s just the money might be spent a little differently in order to active it.
It is likely to cost me a lot more to live a comfortably life, because of my disability. Life is more expensive when you’re disabled. Added to this is it is harder to earn money, and when it’s harder to earn money, you have less of it, which makes things altogether more expensive. And the inaccessibility of the world costs money to solve.
Life is just altogether more expensive when you’re disabled. People including the government somewhat recognise this, but no one who doesn’t live this life, truly understands the cost of disability.
I’m someone that likes to spend a lot of time in my house, but it’s different when you don’t have a choice in that.
If you ever look at that too closely at my situation, you might come to the conclusion that that is because the world outside is difficult for me. There is a lot of inaccessibility that I face on a daily basis. Far more than I will ever have the time or energy to process let alone write about.
There is just some stuff you just have to ignore to get on with your life. But it’s impossible to ignore everything, and I don’t think I should have to just make everybody else feel better. This is why I started to write about and share my experiences.
Today is one of those days, where I can’t ignore my experiences of inaccessibility. The inaccessibility I’m facing today, and my lack of choice in this, is obvious today. As the picture below shows, today is a snow day.
While I have cropped this photo to protect my safety and not give too much away about where I live. The original photo also showed how my garden and the pavement and road outside my home were also covered in this amount of snow.
This may not seem like a lot of snow, and I completely understand that depending on where you are in the world it actually isn’t. But when you use a wheelchair it doesn’t take a lot of snow to make going outside incredibly dangerous. So I’m going to be stuck in the house.
Now I had no plans to go outside today, I’m actually waiting for something to be delivered. The only thing I really had to do was walk the dogs, but they’ll be fine for one day.
But now I can’t leave the house, and this isn’t just a choice, things feel a lot different.
Choice matters. And just because someone is doing something that you wish you could do, like staying at home, doesn’t mean they’re doing it by choice.
Today the world is inaccessible to me because of the weather. And that means there’s nothing I can do about it, but wait for it to pass. Maybe tomorrow will be different, but we’ll just have to see.
I hope you get to enjoy the weather wherever you are, and have the best day you can, whatever that looks like for you.
As I write this, I am underneath two blankets, one is heated the other is not, the nonheated one is over my head.
The heated blanket under the quilt helps to warm me faster. It gets pretty hot under here. But the heat helps enormously with pain, after being out in the cold.
I have not long gotten back after an over night trip, which has required me both to sleep in my wheelchair and to not get changed for more than 24 hours. Rail replacement buses and the joys of travelling on a Sunday, were also part of the, adventure.
I plan to write more about this in a future post, because it’s been an experience, as it usually is. But right now, I need to try to chill for an hour or so until the carers come and I can get into bed and properly relax. I just don’t have the energy, unsurprisingly, to go into detail about all this right now.
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.
If you pay that much attention to this blog and what I write, you may notice that occasionally backdate posts. Who says I don’t get to play a little bit with time.
I had to do it with it my last post, because I’ve just slept almost 12 hours, apart from being awake briefly when my carers came. This occasionally happens to me, and is more likely to happen when I haven’t been sleeping properly. It’s like my body needs to shut down physically for a while.
This time I was woken up by a not nice dream that I’m trying not to remember.
Occasionally I wake up well rested from these crashes. This is not one of those times. I feel a lot less fatigued but I still feel tired, like I could still do with a nap. But I always feel that way.
This time I’ve also woken up cold and uncomfortable. But there isn’t a lot I’m able to do about it. I kind of wish I was still asleep.
It’s a lie that you ever get used to the pain. I think sometimes you just forget it’s there. But sometimes it feels different, as I write this my arms are aching. And while it doesn’t hurt more, different pain throws you more than the pain that happens all the time.
But the electric blanket is helping. And I’ll be getting up in about half an hour, and getting on with my day. I hope you’re able to get on with yours and that you have a good one.
What is the greatest gift someone could give you?
I don’t think many people do.
I just wish people would look at me and see a person, not someone in capable of various things.
Just see me as a person who’s trying to live my life just like you.
Years of people seeing me as a disabled person, has had a bigger impact on me than I think I sometimes realise. I struggle to see myself as anything more than my disability. And I struggle with other people, having issues that are shown a lot more respect and understanding that my own issues are shown.
If people just saw me as a normal person with issues, just like everybody else. And not as consumingly, magical species of disabled person, that’s supposed to have eased living differently. I think I would do a lot better emotionally in my day-to-day life.
I’m not perfect, no one is. Things are difficult for everyone. Just because I haven’t known anything different doesn’t make this easy. You expecting it to be easy makes it more difficult. I’m trying the way everybody else is.
I’m sorry, if this post is a bit all over the place, I think I’ve got a bit emotional with it.
What colleges have you attended?
In all honesty I don’t really like this question very much. It seems like to answer this question I would be giving away information that might give a way where I am, and I don’t want to do that. But I can and want to give a little bit of information about the two colleges I have attended.
So depending on where you are in the world, you might use the word college differently to how I do. College where I am from, refers to a school you attend between the ages of 16-18 at least, but potentially up to 25 depending on exactly what you study. While in College the intent is to gain qualifications which will enable you to go on to work, apprenticeships or further education.
For me specifically I attended college so I could get the required qualifications to go to university. I think university is what some refer to as college. I spent the 4 years after college at university, and I’m going to avoid mentioning what I’m doing with all that now, but back to college.
I attended two colleges, as I had to repeat a year, and the first college I was at wouldn’t allow me to do this. The first college I attended was reportedly one of the greatest colleges in the area. But from experience, they only cared if you were exceptionally clever or were going to fail whatever course you were doing. I was neither of these things.
While at this college, I found myself continually discriminated against by one particular teacher who was surprised not to find me on the life skills course, as this was the course they believed most of the disabled students in the college took. They looked at me, saw my disability, and used that to assume my academic intellect. Anyway while there I had to have an operation and as a result of this I fIled my second year in that college. One of the teachers didn’t believe that I was in hospital, and refused to send me work as she was instructed, she ended up getting in trouble as a result. I don’t think this was the reason I failed, but I don’t think it helped.
Anyway, I still needed the qualifications in ordered to get into university, so I had to go to another college. Now this college was a lot less favoured, it was generally believed to be the college that people went to if they didn’t get into the better colleges. They provided a much broader range of subjects to gain qualifications in, and covered a lot more of the more practical subjects. But the support they provided was so much better than the reportedly better college I had attends previously. So much so the I wished I had only gone to that college and not the ‘better one’.
So I guess the moral of this story is, just because a place has a great public opinion, doesn’t mean it’s the best place for you.
Incontinence can be a real treat if you know what I mean. And sometimes I can be incredible unlucky and have issue multiple days in a row, which unfortunately creates a lot of washing, for obvious reasons.
Now I’m not the one that does my washing. In theory I could do some of it, with our current set up. But I would not be able to do a full load of washing, this is currently completely impossible for me to do, due to inaccessibility in my house.
However, even if my house is more accessible in this area, it doesn’t mean that I would be able to complete a full load of washing. I don’t have a physical energy and strength required to do so on a regular basis. And unfortunately, I definitely do not have the strength and energy to keep up with the washing that I produce.
What I’m saying, is that regardless of my set up, I would always be relying on someone else to do my washing. Which leads me to the same problem, I have with needing to be reliant on others to do things for me. I’m relying on them doing it the way they’re going to do it. And I can’t really complain about it.
This is a common occurrence for anyone that is regularly relying on others for help. If you get lucky, you are sometimes able to ask people to do things a certain way for you. But the chances of this happening with regular everyday tasks is unlikely and definitely not possible for me. It actually risks me having any help at all. If I argued every time something wasn’t done the way I wanted to.
Sometimes you have to pick your battles. When you need a lot of help you have to pick your battles a lot of the time.
To anyone that doesn’t need a lot help, this might sound horrible and ungrateful. And in all honesty, I understand where you’re coming from with this opinion. But I have to say you’re wrong.
When you need a lot of help the only way you can get any say or control in your life is by specifying questioning how that help is done. Can you imagine if you didn’t get to say anything that goes on in your life? How difficult that would be to deal with emotionally. That’s what people need help a lot of the time, myself included, are stuck dealing with.
It’s a balance of control, and gratefulness. And the gratefulness gets old.
It’s not that I’m not grateful, it’s the being grateful all the time it gets old quickly. h
I hope you understand where I’m coming from and it doesn’t sound too horrible.
I’m incontinent,
If I had to pick a part of my disability that makes me the most uncomfortable, I would say this is it. So for that reason I try to be as open as possible about it, to not let it win.
Now having grown up disabled, this lovely part of our soecity called exclusion, pushes me to be in the same circles as many other disabled people. A lot of people think that this is actually inclusion, but from experience they don’t actually care what disabled children have in common, the fact there disabled is enough. And pushing is together is easier than creating more accessible inclusive spaces where we just get to be, but now I’m getting a little disstracted here.
As a result of this exclusion, I happen to know a lot of disabled people, simply because they are disabled. Now while this can sometimes be useful, as we have a lot of shared experiences, not everything about us or what we believe is the same, simply because we are disabled. So this can make for some interesting friendships to say to least.
Some of these friends are also incontinent, and this is something that I personally am thankful for that we have in common, due to how I still emotionally struggle with my incontience. Anyway, I was with one of my friends the other day, who pointed out that as a result of incontinece there was a certain smell in the area. Now where she this could have come from many people, but I’m pretty sure it was me. Lets just say she wasn’t very nice about it,
I hope the way I’ve explained this makes sense as I’m still pretty upset by it so I may have been vague, let me know if it doesn’t.
What I don’t understand is no matter who was responsible for the smell, why they had to make a big deal about it.
It’s not like anyone is incontinent by choice, or making a smell by choice, and it could just so easily be them. I think that’s the part that really gets me, I’ve known it to be them before and I have never said anything. Normally I don’t care about things like this, but given who they are and the specifics of the issue, there reaction is really bothering me.
I guess just because you have a certain issue, doesn’t mean you will have respect and understanding for people who also have that issue.
My Inaccessible Life 