So this morning my clothes had a hole in them, and I didn’t realise until after I had them on. Now I couldn’t ask the carers to change my parents, they would have said no anyway for time related reasons. And I know this so I didn’t ask them.
You don’t get to change your clothes if your me, you don’t get to put new pants on, or a different outfit if there’s something wrong with it. There isn’t time when you need help, for choice, for experimenting with outfits. At least not with the care package that I have.
Maybe this is why I mad myself a uniform. To avoid being stuck in clothes that I don’t like wearing. But today that uniform failed, and I just had to put up with it.
This is why tomorrow I am waiting till after my carers to go to the family party, as it’s my only opportunity to be redressed and somewhat presentable for the situation.
But however they dress me, even if it’s wrong or uncomfortable, I am stuck with it. So wish me luck that I’m dressed as comfortably as I can be tomorrow. It’s already awkward for me to be at family events at inaccessible venues, without being dressed uncomfortable.
So today I finalised some plans for upcoming short trip with family. And when I say short trips I mean short the longest one is overnight.
Now going to the majority of places leads to some element for an inaccessibility for me, I actually think that’s being generous. I don’t have the time energy or willpower to write down every instance of an accessibility I face. Honestly I think I would get bored. But the point being whenever I go anywhere I have to make the decision as to whether I’m willing to accept the inaccessibility that that will inevitably involve. There is ultimately something I have to sacrifice, if I didn’t I would never get to do anything. I’ve decided that it is worth it for these trips.
Most of the sacrifices I make surround my incontinence and personal care, for one particular trip it is no different. For the overnight trip I have to go without care for 24 hours, experience unknown inclines and access to properties, sleep in my wheelchair, and tackle the public transport in an area unknown to me.
The final part of this might not sound like much of a difficult thing to do. However growing up and an inaccessible world I know that it is possible that I may not be able to use the public transport that is supposed to form part of the journey I will be taking. In this instance this is actually the backup plan to getting a taxi, which I’m even more concerned about being accessible to me.
Now as I’ve said these are all things I’m willing to do, and to be honest there are things I try not to think about too much. I tried to focus on the fun I will be having, particularly this time, as both of these are for family parties. It is difficult though, and in many ways I am not looking forward to these events as much as I am looking forward to them.
Just remember you can never be sure of how much effort someone has made to attend something. What inaccessibility they might have faced? What they might be giving up? I’m not writing this to spread guilt. They have made the decision fully knowing what it would cost them and they still wanted to come. Consider it a privilege that everyone who can attend has. And don’t blame those that can’t, for not.
Even the most generous person will argue against helping someone do something when they have to help them a lot.
I’m not talking about the necessary things, I’m lucky enough that I’m always supported in those. But often the little things, are an argument. And they’re an argument I lost this morning.
I wanted to walk the dogs first thing in the morning, as I both like to get it out of the way, and also think it is better for the doggies. But as I need someone else to go with me, to help, if they don’t want to go that early in the morning, we don’t go.
Honestly my day got worse from there. Sometimes I just hate not being able to do things for myself. Today is definitely one of those days.
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.
This question has been really upsetting me recently.
I have been invited to a family event that I was happy to sort my own travel and sleeping arrangements to. Namely a train and sleeping in my chair, but there’s nothing new there in the world of inaccessibility. However someone said they would find away for me to travel with other members of my family, and they just haven’t.
I’m so used to not being able to travel with them, that it never crossed my mind that I would be able to, until the idea was suggested to me. Now it feels like my opportunity to be part of the family has been taken from me.
I know that may sound dramatic, but that’s honestly how it feels.
Did I mention that part of the new improved travel plan that my family member wants me to use, involves getting a taxi. When you’re a wheelchair users there’s no garuntee that I’ll be able to get in any taxi. And this just feels like a complication I don’t want to deal with on top of everything else
I thought for once I would get to be part of a family event, without feeling like I’m in the way. I thought that my family were willing to go a little bit out of the way to make me feel this way. I guess I was wrong.
Sometimes I think the world’s only accessible to me if I stay home, and then I realise just how inaccessible the world must be to me for me to think that way.
This is just one of many times people close to me have said they’ll include me like it’s no big deal, and then when it comes to the practicalities of them actually including me, it becomes a big deal. To the point where I’m not sure I even want to go this time.
But this time I don’t really have the option not to go, well I do but it’s a little more complicated. As my sister wants to go, if I didn’t go I would be left home alone, with the dogs. This would mean that I would need to cancel the carers even if I don’t go to the party, as it wouldn’t be fair for me to drop my sister from going to a party she wants to go to. So I would be home with the dogs and stuck in my wheelchair for a long period of time anyway.
So today I spent the day with people who also have disabilities. In many way this is emotionally easier for me to deal with, but it doesn’t mean the physical difficulties of my disability are immediately negated.
They wanted to go somewhere that was inaccessible to me, and despite being a little upset about this, I wasn’t about to say no to them, doing what they wanted to. Though they did ask my opinion on going where they want to, but I felt like I couldn’t voice my true upset with it all.
It may seem sound self centred but I would think that they would get it, and suggest going to a place that I can’t get into. Specifically because they themselves are disabled and they have been in similar situations themselves. Bearing in mind they did know in advance, that I would not be able to go in the place before they decided to go. But it was important to them and I’m not about to stop them as I’ve said.
It’s not that I want a day to revolve around me, may have suggested hearing the situation. it is just that I would like a day to completely be accessible to me.
But unfortunately, in such an accessible world, being with other disabled people does not guarantee accessibility to the world around you. And that is just a reality that you have to learn to live with.
Disclaimer: This person is written using speech to text, let me know if any of it does not makesense.
I spend a lot of time seeing little problems in my life that I want to fix, but I can’t.
Little things, like when a floor needs cleaning, and yes that’s a real example that sparked this post. Little problems that are actually easy to fix, but I just can’t fix on my own.
But the person who I’m often with that could help me fix the problem, doesn’t have the same inspiration of desire to fix the problem that I do. And because there who I need to fix the problem, it doesn’t usually get fixed.
I know I owe a lot to the people in my life that help me. But it gets frustrating when they can’t, or won’t, help me the way that I want to.
I can understand how that makes me seem ungrateful, but there’s only so long you can be grateful for when you need so much help.
Fixing most problems is something that is inaccessible to me.
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.
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.
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.
My Inaccessible Life 