Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
What was the last thing you did for play or fun?
It might sound boring to you, but as someone with fatigue, I love a good restful nap.
Unfortunately, I don’t wake up from all of the naps I take feeling well rested, but the ones I do are the best. Even though a few hours later I know the fatigue will kick back in again. The short time I have the energy to do more than just about function is nice.
This is your reminder to not let anyone tell you what counts as fun. And to nap whenever you can.
What cities do you want to visit?
I’m going to be brutally honest here and and say that travel is difficult when you’re disabled and poor.
Don’t get me wrong being disabled makes it difficult to travel. But the hardest part of travelling, or in my case not travelling to another country, is being poor.
There is some truth when they say that money can buy happiness. I don’t think it’s that simple, money doesn’t solve all the problems of the world, but I think it can buy you freedom.
You can definitely buy the freedom to travel, anyone with money can attest to that. So while I would love to travel, it’s just not possible.
But the question is what city would I travel to, if I could.
If I could travel, I would love to go to Vegas. I’d love to try my luck as it were.
I would love to go on a plane, or a boat. I’d just love to travel differently, to go somewhere different.
What are your favorite physical activities or exercises?
I love a good nap, and to be honest I think most people feel the same.
The perk of having a physical disability is that you don’t put the same pressure of physicality on yourself that able bodied people do.
Often I see people push themselves into over exertion, doing something to keep themselves fit, because they think they need to.
I’m not talking about being healthy or doing what you love. Both of these things good things to do and can both involve physical activities. But it’s important to remember that these things mean different things to different people. That physical activity looks different for everyone.
Picking up a cup to drink a coffee it’s still physical act, and yes I’m saying that as a reminder to myself to drink the coffee next to me now. But don’t let anyone make you feel bad if this is all physical activity you can manage or even that you want to do.
It’s your life you’re living, not anyone else’s.
What’s your favorite cartoon?
Actually doing what you want to is hard. Any person in the arts will tell you that.
As much as I have to write, as much as I love to express myself. a lot of the time what I want to say, never leaves my mind. The only person I can really be annoyed with about this is me.
As I write this, it is almost 5 am. And I’m actually using voice to text, it took me longer than it should’ve done not think of doing this, as cheating in someway.
Hello again, internalised ableism. I wish it was longer between our meetings.
There’s I really important post I want to share. But I’m annoyed with myself at not having the emotional energy to share it at 5am on a Saturday morning. How bad is that?
Does anyone remember watching cartoons on a Saturday morning? I think we need to bring that back.
Anyway, I can’t sleep because I fell asleep to early, so really, it’s my own fault. I knew it was a bad idea to go to sleep when I did, but sometimes fatigue just wins.
I had a world wind of a day yesterday, and I want to share some parts of it, well one particular part. But I can’t bring myself to write that post, for, well reasons. But obviously I can write because I’m writing this post, about wishing I could write that post.
Maybe it’s because the post I want to write feels so important, that I’m worried I’ll never be able to do myself justice with it. I just don’t know really.
But anyway, my favourite cartoon is Bob‘s Burgers. I wish I could explain why but I don’t really know. I love the way it’s written, the stories it tells, the inclusion, the escapism, the nonsense, all of it.
If you haven’t watched it, you definitely should. I know it’s shown randomly on some channels, but if you have Disney+, it’s mostly on there, apart from the season, which unfortunately I’m still still waiting to see.
I posted today in a fan group for the show, asking for similar shows to watch, as I’m almost always watching Bob burgers on repeat and I just wanted to see what else was out there. I got some lovely responses and some new shows to try. But if you have any recommendations, do let me know.
I should try to get some sleep, there is a possibility that I have a long day today, last-minute plans and all that. I don’t make them often as being disabled requires a lot of planning and last-minute plans are kind of the opposite of that. But I have options, so I’ll see how the day goes.
Either way, I have to be up in less than two hours.
Are you more of a night or morning person?
After a fun, busy, but very cold day, I got home and took a nap. At the time of writing this, I’ve not been awake long. I was awake briefly for my care call, but I went almost straight back to sleep, so I don’t tend to count that.
I will probably be awake for several hours, which will annoying leave me feeling tired tomorrow, despite having slept fairly well.
Now last night I last quite well, so despite going out for a few hours, shouldn’t have been as tired as I was. But that’s fatigue for you. You don’t get to choose when you’re tired, it has almost no relation to whether you have slept or not.
It might be worth remembering that I’m always a little tired, I often say to people I was born tired. Occasionally I am so tired that I’m not able to function without a nap which usually lasts a few hours first. That was the position I found myself in tonight.
This is my best guess at what fatigue is for me, I refer to this as CP Tired, as I know this is tiredness that for me comes from my Cerebral Pasly. But as I’ve suffered from both Cerebral Pasly and this tiredness my whole life, there’s nothing I can pinpoint as a change and a distinctive development of fatigue. It’s just the way my life has always been, and will always be.
So I find this question hard to answer, given the fact I’m always tired in some way. I do have an early care call in the morning, but that is so I can be up and have the most choice and control over what I do with my day. It’s not actually because I like to be up early in the morning. I often end up going back to sleep for a few hours in my chair, depending on my plans for the day.
Based on what I’ve told you, I think I’m going to leave you to determine the answer to this one for me.
Do you think I’m more of a morning or a nice person?
The truth is I honestly don’t know.
What are your feelings about eating meat?
I honestly don’t find anything wrong with it. I know that many practices in order to get the demand required are inhumane and this is obviously wrong. But the actual practice of simply eating meat I have no problem with.
You with me so far?
I don’t thihk this is an usual take, but the next part might be.
So I actually don’t eat a lot of meat simply because I find it physically difficult to eat because of my disability. I think when I was younger I associated this difficulty in eating with certain typed of meats not tasting good, when in fact they were just difficult to eat.
In many ways you could say that big chunks of meat are simply inaccessible to me. They don’t feel worth the physical effort required to eat them.
So my personal opinions on eating meat, are not strictly reflective of whether or not I eat meat.
What are your two favorite things to wear?
I actually wear the same jumper almost every day, so much so that I have five of them to make sure that I have a clean one. So even if you see me wearing the same outfit just know that it is clean.
Please excuse the bizarre look on my face in this photo, Imogen, my other dog had just jumped off my knee and surprise me. But this is the best picture I could find my jumper. Most of my pictures are perhaps unsurprisingly of my dogs.
I started off wearing these jumpers two years ago give or take. I bought one while I was out somewhere cold and I really liked it. I found myself favouring wearing it daily and being upset if I couldn’t. It was just so comfortable. To solve this problem I bought multiple of the same jumper.
Honestly not only was wearing this jumper the most comfortable thing I’d found, but I also feel like it took the pressure off me having to decide what to wear daily and how to look a certain way that would be considered presentable.
I honestly hated the question, of what did I want to wear today, almost as much as I hated other people and answering it for me. I want to control but the choice was just too much. So I got rid of the choice maintaining the control. And as such what I suppose could be considered my own uniform was born.
I’m not sure how long I will continue to wear these jumpers for, probably as long as I feel comfortable in them. And I don’t really want to analyse exactly why I’ve made the decision to wear them. it doesn’t hurt anyone to wear these jumpers, and so I don’t think it’s something that needs to be looked at in a lot of detail.
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.
If you could live anywhere in the world, where would it be?
If I could live anywhere I wanted I would probably stay where I am, but probably in a better house.
I like where I live. I think.
Maybe I just like the known better than the unknown.
At least I know what inaccessibility problems I have to deal with staying here. The unknown is worse.
What’s your favorite month of the year? Why?
It’s hard to put it down to a month. Time is kind of weird to me.
I can tell you things I’ve done, places I’ve been, but when I’ve been there is hard to pinpoint. But one thing I can tell you is what the weather was like.
In some places in the world being able to remember what the weather was like would tell you what time of year it was. But it England, it’s more complicated than that.
The weather changes so quick, but it can be hard to pinpoint a to a certain weather. But perhaps unsurprisingly I can tell you that my favourite time of year at this times.
I wish it was the cold colder times. But like much of my life I love the idea of a lot of things I don’t actually like. I love the idea of winter and snow, but my disability, my reality, doesn’t
I’m sorry because I know that this post doesn’t answer the question.
This one’s slightly unhinged and might not make sense. Sorry.
My Inaccessible Life 