Tag: Inaccessibility

Stuck in bed.

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My hoist broke today. A necessary piece of equipment I use to get from my bed to my chair. So I spent the day in bed.

There are different types of hoists which enable people that are unable to transfer themselves, to be lifted safely. My hoist is a ceiling hoist, meaning it runs on tracks attached to the ceiling. This is a lot more compact than a portable hoist, which is similar but on a frame with wheels which needs to be pushed around the space.

For those of you that don’t know I have included a picture of my hoist. The first picture shows how it was broken, the second picture shows my thankfully now fixed hoist.

Image Description: A picture of my hoist on  the ceiling with the track visible. The top of the hoist shows exposed wires, and the cover is dangling above the part of the hoist a person is attached.
Image Description: A picture of the same hoist as in the first picture, above my head, with the cover now reattached.

My hoist was fixed very easily with the cover just being reattached by the engineer. It is something that a non-disabled person would likely have been able to do by themselves. However I often need help to do what others might view as a simple fix. And thought it best to get it fixed professionally to ensure it wasn’t accidentally broken more by someone else trying to fix it.

Now I could have gotten up after the hoist was fixed, but I honestly just didn’t see the point. This is why I like to get up and into my chair early every day, even if I go back to sleep because I find it difficult to find the motivation to get up later in the day. I’m very used to napping in my wheelchair or my other chair, which is also I we’ll chair I guess.

It’s important to remember that if a person hasn’t chosen to stay in bed, they’re not being lazy for staying in bed. The choice in there actions matters.

Another reason I make sure I get up and into my chair every morning is so that I don’t become unable to sit in my chair, and so that I am able to have as much freedom as possible to go out during the day. 

When you rely on technology, on accessibility aids, to live your life, them braking is a loss of freedom. And as things almost always brake at some point, you just have to live your life with the potential loss of freedom. With the reality that the world could become inaccessible to you with no warning.

This can be one of the reasons someone may have to cancel plans with others with little or no warning. Just beware that when plans are cancelled at short notice, the person may not want to cancel on you. If it’s completely out of their control, don’t make them feel guilty for it, I promise you they feel guilty enough.

We can all feel like we have a lack of control in life, and there are many situations that we do actually not have control in life. However most people will have at least small elements of conrol, which room of the house they sit in for example. But when you’re disabled, it can feel like this applies to all situations, and sometimes it actually does.

A little compassion can go a long way, this applies to everyone, not just disabled people. I’m just thankful I can get on with the rest of my plans for the week.

Mondays.

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So my family tend to go to a cafe every Monday. My dad picks everyone up, and drives them there. Apart from me and my sister who get the bus.

Now she gets the bus because I get the bus, on the times I haven’t gone, my dad has picked her up.

But the reason I get the bus is because my dad’s car is not accessible to me. This is a choice my dad has made. When I was a child he had accessible vehicles for me, but as soon as I was able to use public transport for myself he got rid of them because he didn’t want them. And I didn’t need him to get around as I good do it myself now. This was his understanding of the situation, not mine.

Being alone

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Sometimes, being alone feels inaccessible to me. And yes, I phrased it like that just to fit the blog, but let me explain.

I’ve only had to be alone for a couple of hours today. But I did have to answer the door to my carers during this time. I somehow managed to get myself caught in my charges. I have a habit of being able to do that, in ways you wouldn’t imagine.

Usually I have the help to get myself out of it, but tonight I did not. I panicked. however, I was able to unstick myself from the mess I had created and therefore let the carers in. But I know for a fact, this will now have made me nervous for the next time I am alone when I’m expecting my Carers to come.

But as I’m sure, whoever decides to read, this will know, being worried about something doesn’t mean you can avoid it. For me, it comes up every week or so at the minute.

The most annoying part of all of this is that I really want to be alone, I think. But because of my disability, I am unable to be alone for very long periods of time. And it’s just my luck that during the times I am alone, something seems to always go wrong, like tonight.

You’d think I would be used to it by now, not be able to be alone. But I don’t think you ever get used to the things in life that aren’t a choice.

I’m supposed to say my wheelchair, right?

On By Katy DalyIn Blog, My Disability Truth, Writing PromptsLeave a comment

The most important invention in your lifetime is…

So I’m going to answer this question in terms of what invention I feel has had the most important impact on me personally. Not necessarily the most important global or social invention of my time. Basically I’m not doing any research, I’m just answering the question based on my life.

If you looked at me now, you’d think this was the most logically answer. And while I am grateful for the invention of the wheelchair, and in my case particularly the electric wheelchair, there are in fact other more important inventions to me.

I don’t think I’d be answering this question properly if I didn’t consider the inventions that undoubtably saved my life when I was born. Like many with my condition I was born extremely prematurely and should’ve died. So a small nod to the inventions that are the reason I’m alive.

Then it’s important to remember the ones you’re more likely to see me in, my electric wheelchair. There’s my electric bed and air mattress that I need to sleep, as well as my electric blanket which has to be the best pain killer for me personally. My comfy chair which just gives me somewhere else to sit and my shower chair, which I hope by the title is self-explanatory. Then you’ve got to remember the hoist, that gets me from a, to b, to c and sometimes d.

But the ones that I feel are the most important thing to me are those like the mobile phone, the internet, the computer. Now I know this sounds very millennial of me, if I’m getting the terminology correct. And someone’s somewhere is going to judge me for my reliance on the internet. But just remember where you’re reading this blog.

The internet, social media and the technology that exists to use them on. Provides me access and inclusion to the world around me in a way my wheelchair cannot do in such an inaccessible world. Steps do not exist on the internet.

I know social media gets a bad reputation and I understand why. But I always say it’s the way people use technology, not the technology that it is bad. While this doesn’t apply to things like guns which don’t have a good use. It applies to things like knives which clearly do, and in the case of this post, social media.

Social media lets me be the me I wish I could be in the real world. It lets me meet new people near and far, and learn all about them. It lets me keep in touch with people, that would be even more difficult to do without social media due to my lack of mobility. The internet truly is a wonder. And phones can do so much, provide so much access beyond what I use them for.

Inventions truly are a wonder. They can often be used by people in ways the person who invented them likely never imaged. They are never to be underestimated.

I’ve talked a lot about this recently.

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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.

It’s rarely just once.

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So I shared, as I occasionally do, a pavement obstruction in my local Facebook group. It’s not the first obstruction or obstacle I’ve faced today, in fact it’s one of many, but it’s the first one I had the confidence to share publicly.

My confidence with sharing these issues can be fragile. It fluctuates, and it’s difficult, even though I know I’m right to share these problems.

This issue is the inadvertently the cause of some of the people I share it to. So pointing it out is easier. But other issues aren’t as black and white. It can be harder to pin point who exactly causes the issue, so it can be harder to share.

Who’s fault is it that a lift is broken? Machinery brakes. It takes time to fix. It wouldn’t be fair to blame a specific person for this issue, when it’s a system. But does that mean I’m not allowed to share it? I don’t always know to be honest.

I definitely couldn’t share all the issue inaccessibility issues I face on a daily basis. It would be too difficult to share, and would mean I’d be focusing unfairly focusing on the negative for me.

So just remember when someone gets the confidence to share an issue with you, it’s rarely all that they are dealing with. They’re sparing you the full picture. Be kind.

Pretty isn’t accessible

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It’s difficult to say whether this is because I’m disabled or because I’m relatively poor. The two are very intertwined for me.

Tonight I had water come through a light at home. It’s been temporarily made safe as an emergency. And while it will be fixed at some point in the future, it will never be made to look as if it didn’t happen. That’s never a priority of the social housing.

Don’t get me wrong I understand why, of course. But just because you understand why something is the way it is, doesn’t mean that you have to like it that way. And because finding income is shall we say more complex for me, in no small part because of my disability, there’s nothing I can do about it off my own back.

I’m stuck with the minimum. Not to sound ungrateful, but the minimum gets tiring.

At least I have four walls, heating, electricity and food. And most importantly my babies are safe, and as well looked after as I can make them. I know I need to be grateful. But watching everyone else have the house they dream of, have a house they feel like is there’s when I can’t, is just hard.

Snow Day

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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.

Image Caption: The ramp outside my home covered in a thin layer of snow.

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.

I hate the damage my disability can do.

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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.

The middle of the night.

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Everything seems to go wrong at the most inappropriate time to go wrong. I promise what’s happened is now there’s dramatic that opening sentence makes it seem.

As I write this, it is nearly 5 am, I’ve already had to call for help once to get the remote control for my bed off the floor. I dropped it again, but was able to pick it up using a charger wire. Sometimes you have to be inventive when a problem needs solving in the middle of the night.

I dropped the remote for the second time, trying to look for a charger that I don’t even need. But the fact I can’t find it and I know that I had it makes me feel physically more comfortable than I already do, hence why I was trying to look for it.

Now I have help, but I have a rule that in the middle of the night I only ask for help when it is something very important. This much of a problem in the middle of the night. In other words, I didn’t think it was fair to wake someone else up for something that can wait till the morning. There’s only two things that constitute not being able to wait till the morning. One is dropping my control, as without the ability to move my bed in the night, I wake up in a lot of pain or I’m unable to fall asleep to begin with. The other is, if I’m falling out of bed, I would hope that one is self-explanatory.

Using my own rule, I felt comfortable given the time getting help. But angry at myself that I needed it so soon again after I did the first time. my experience of being disabled often seems to come with a lot of being angry at myself for things I can’t control.

I think this is why I get so distressed when I can’t find something, like the charger I was looking for, regardless of the time. I don’t even need the charger right now, I’m just frustrated that I don’t know where it is. The most annoying thing is that I know where it’s likely to be because I can’t find it. That is either on the floor where I can’t reach or caught in my bed, where again I can’t reach. It’s illogical for me to think that it is lost completely. And while I know this, my strong need to find it, seems to overwhelm me. I know this is stupid. I know that logically, I don’t need to find it right now, but still, I feel like I do.

But I think I get so distressed, because losing things, no matter how relevant they are represents the lack of control I have in my life. I’m annoyed that I cannot be the one to look for things when they are lost. Therefore losing something is even more distressing to me. These feelings are often amplified in the night, when I don’t feel able to ask for help, or when I am alone and I can’t ask for help.

I wish it didn’t bother me so much when I can’t find something, but knowing I don’t really need the item doesn’t change the factory I’m distressed by not knowing where it is. I’m trying to avoid the thought that if I was not disabled, I would be able to look for this charging right now on my own, despite the time. Logically, I know I should be thinking more along the lines of the fact that it is not my fault that finding this charger is inaccessible to me. But it’s hard to be logical, where internalised ableism is concerned.

I’m so tired. Despite how much I have slept during the day yesterday, as I mentioned previously. But I can’t sleep. All because of a stupid wire.

I am also now in more pain than I was earlier from trying to look for something I don’t really need. I don’t think this is helping in my lack of ability to sleep at this time of night.

It doesn’t even matter, at 5am this doesn’t matter, and yet. Why can’t I find it.