Tag: Independence

It’s not a lie in if I don’t ask for it.

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My carers were two hours late this morning. This is an improvement on the previous day when they were three hours late. However, when they arrived they said that they let me lie in.

I’m just going to say this again. It’s not a lie in if I don’t ask for it. You’re not doing me a favour for being late.

Luckily today I do not have plans but next Saturday I do. It’s not up to you to decide what I want or what’s best for me.

I don’t understand why it’s so hard for people to do their jobs. And when they don’t they make the life I’ve built around me inaccessible. Most people aren’t going to care that I couldn’t be there because the cares decided to let me lie in. You’re not doing me a favour.

The Disability Tax – Sometimes it feels like everything is inaccessible.

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So today I spent a significant portion of time figuring out how I could do something in the most simplest way possible. The instructions for which would be pretty easy for most non disabled people to follow and complete.

I then decided I couldn’t do it, and so spent an even longer period of time seeing if I could justify paying someone to do it for me.

Exactly what I was trying to do is not important to this post. What I’m trying to explain is the general understanding that I as a disabled person often have to pay for things to be done that non-disabled people are able to do themselves, and can therefore do for free. The cleaners that I have come to the house, as I have written about in a previous post are one such example of this. But there are many of them.

This is known as the disability tax, or the extra cost involved when you live in an inaccessible world as a disabled person. In the UK the disability benefit known as Personal Independence Payments (PIP) is supposed to cover such costs. But unsurprisingly it doesn’t cover it, but it does help, and this is the reason you can still be on this benefit while in employment.

Sometimes it feels like everything falls into this category of “things I need other people to do for me”, whether or not I have to pay for it. And if I’m being honest today was definitely one of those days.

Sometimes the cost of the disability tax, of the Innaccessiblity in society, is emotional as well as monetary.

How dangerous is to dangerous?

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Image Description: This picture shows me in my electric wheelchair from the back on a bike lane. Next to a pavement with a patch of grass. Several vehicles have been blocked out with white pencil and pink love heart emojis.

So I had to deal with this situation yesterday. Due to a car blocking the only flat access off a crossing, resulted in me having to go on the bike lane of a very busy road.

Some of the instances of obstructions and Inaccessibility I have posted on this blog and elsewhere may not seem too bad, they may seem like minor problems. But they are all symptoms of the same behaviour, behaviour like this that can put me and others in real danger.

I just wish that people understood the direct consequences of there behaviour on others, I suppose that’s why I post.

But it gets tiring honestly. I just want to be able to go out and know I’d be safe.

It took a lot of skill to navigate a situation like this. Something I’ve been doing since I was a young child. But something I absolutely shouldn’t have the skills to do. But needs must.

Home Alone

On By Katy DalyIn My Disability TruthLeave a comment

So I’m home alone while the person I live with does some errands. I don’t want to seem like I can’t be home alone, because I can be. That is until something needs doing.

One of my beautiful little doggies loves to cause problems and she might have just been doing so in the other bedroom. The personal lives suggested that I go and check it out, when I told them this. However it’s not that simple for me, simply going into the other room requires both a lot of steps and physical effort on my part. She’s also now also asleep next to me therefore I know she is not causing problems right now, and if I move to go and find out what problems she may have caused it will undoubtedly wake her up and therefore she may cause more problems. Add to this the fact that I am unlikely to be able to deal with any problems that she may have already caused anyway, and due to a broken door I am unable to stop her causing more problems.

Sometimes able bodied people or in this case people that are more able-bodied than me. Will ask things of me without considering or being aware of the steps involved specifically for me in what they are asking. They may not realise that they’re extra steps involved in doing something as a disabled person.

If I were to do what they have asked of me I would have to take care to put the things on my lap on to my bed properly, like my blanket and phone. As there are many steps involved in me trying to pick them up again should they fall on the floor, if I can do it at all. Next I have to struggle to open my own room door followed by the other room door that I need to go in. This will take a good five minutes just to get me into the other room at least, which is longer than it will actually take me to check if there is a mess or not. Like I said earlier even if there is a mess I will probably not be able to do anything about it.

So I guess this one is just a reminder that sometimes when you have disabled people to do simple things for you they aren’t quite as simple as you may think they are. While they may want very much to help you the energy required may not be something they are able to spare for you or to get the task done.

It’s not just that I have less energy than many other non-disabled people come out but the fact that doing something will actually cost me more energy than it would likely cost a non-disabled person to do it.

To any disabled or chronically ill people reading this, it is ok to make the best choice for you to conserve your energy and get the most out of your day Whatever this might look like for you. Remember it makes you smart and pragmatic in dealing with a situation that has components others may not be aware of. Don’t let their judgment of your actions dictate not doing what is best for you.

This post links to the idea of something known as Spoon Theory. Which provides a way of explaining an understanding how much energy disabled and chronically ill people have and maybe able to use or may use doing a certain task. This is definitely something you should look into if you are interested and I’ve never heard of it before. It is likely to be something I write about again as it is very relevant to me.

Cleaners are an accessibility tool.

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Well for me at least.

You see someone close to me referred to the fact that I have cleaners and that is a sign of not having a hard life. From an able normative perspective, I can understand this. It’s easy to jump to thinking I must be in a lucky position to have cleaners do the work for you, or something along those lines. While I understand that I am lucky to be in a position to be able to afford cleaners, for me they are an accessibility need.

They are a service a pay for as contribution to my house. They are necessity. While I’m not doing the work myself. I, through them, am still contributing to the upkeep of the house.

This is not to call anyone out who chooses to have cleaners, who may not exactly need them. But just to remind you that not everyone who uses a service that anyone can use, is choosing to use them. This happens with delivery options on systems as well.

What may be the easy option for some, maybe the only option for something to be accessible to others.

Both deserve not to be judged for the way they use the system they use.

Remember needing help and taking that help is not a bad thing. Its okay to need help. Even if you could manage something, rationing you energy in the best way for you is never a bad thing.

Staying anywhere else.

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So I spent the weekend with my boyfriend, with an interim visit home to walk the dogs and to receive personal care. And with his permission, I’m going to explore the Inaccessibility and the Accessibility with adaptations of staying with him, and by extension anywhere that isn’t my home.

It’s honestly difficult to list every adaptation an element of accessibility I implement to stay somewhere other than my home. I’m just so used to do it without thinking. So I’m going to cover a few of the adaptions of the way I adapt while staying out of my home. But the chances are I will miss some, still, I’ll do my best.

In order to stay anywhere other than my own home I have to spend the night in my wheelchair. That’s the first adaptation. While it’s not particularly comfortable, it’s my most comfortable option. My chair tilts which does help comfort wise, and my chair is the second most comfortable position I could be in outside of my bed. So it logically makes sense that I’m somewhat comfortable staying in it.

The second adoptions I make to sleep somewhere other than my home is to go without my personal care. This can make me incredibly uncomfortable or it can be barely noticeable depending on what state I’m in, without being to personal about it. This is something I’ve done on several occasions, and while I can’t say always gladly I can say they’ve been worth it. But just think for a second is this something you would be willing to do to do what was necessary or something you enjoy? It’s become the norm for me. I’m almost used to it.

Another adaptation I make is not changing my clothes. While this would be in someway possible, it would require help and would not be completely possible anyway.

This leads me to another adaptation I have to make, accepting help. This has always been a struggle for me, despite how much of it I need. To accept the help of others when I need it. I accept the help of my family and carers, reluctantly, but as a necessity. I do it. That said I still do struggle even with taking this help. And accepting the help of others in general is still very difficult for me.

Staying with the person I stayed with meant that I needed there help to plug in my chair. And also that I had to remember to bring my chair charger which I thankfully did. Though they were more than willing to do this one small thing for me, it still felt like a big problem. I still worried I would get in the way.

I think this in part my biggest problem with accepting things from others. I get used to my help coming from certain places and certain people. Changing this feels like I’m somehow putting myself in the way.

These are just a few of the small adaptations I had to spend a night or two away from home. To live with some sort of freedom from my care and I suppose my disability. And I can say with confidence that the specific time I stayed away from home that inspired me to write this, was definitely worth the sacrifices I make.

The Grass is still Green

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This entry is an update on my previous post – Green Green Grass. In which I talk about the state of my garden and trying to get on the local scheme in my area to get it sorted.

I had a response today, to my re-inquiry of the issue from several days ago. Which basically gave me no update. Only that my request had been passed on to the relevant team. Which was the same update I received when I first made the enquiry to get on the scheme months ago.

I’m slightly frustrated that they didn’t give me any new information. But at least I have written proof that they have not forgotten about me I suppose.

I’m torn with what to do with my garden in the meantime honestly. I could probably get a few family members to sort out the garden this once, and trust me it needs doing. But I’m worried if I do that, they somehow may not think I need to be on the scheme if that makes sense.

Having others around you that could help you, can be scary when you need government provided help. It feels like a risk to take a one off, that may cost me something I need. This is something that I also have to be careful with the day to day help I receive from my sister. I have to have just the right amount of help from my sister, to ensure that my council provided care isn’t compromised in any way. Or that no one suggests that I need more care from official sources.

The concern that I could one day be placed in a care home, if the amount of care I need to receive officially costs the council to much, is very real to me. That is to say the care I receive and from where I receive it is a balance to say the least.

The help I receive is always a balance, as it seems like it may end up costing me my independence in some way. I hope that makes sense.

Anyway in terms of the garden, I’m no closer really. But I hope I find out where I stand soon with this.

Sometimes I have to be able to see the future.

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I’ve been on my own today. For the most part it hasn’t been bad. It’s been quite nice if I’m honest, just me and the dogs. Until I wanted to take the dogs out for there walk, will my sister let me know that you probably wouldn’t be back in time to do this before my carers get here.

I thought I could manage doing it, it’s a struggle but I’ve done it before. And the truth is maybe I could have done it, if my world was set up in such a way that taking them for a walk today was accessible to me.

But I didn’t know that I would be taking them out alone, I didn’t plan ahead to ensure that it was. I did plan ahead to feed them on my own. I did plan ahead of to make sure I had water on my own. But walking them was not on the agenda.

And while I do feel a little guilty, I know logically that one day without a walk, is it going to hurt them. I also have to remind myself that is not my fault that I did not specifically plan things I did not know what happened. I cannot see the future. But as a disabled person not being able to see the future can often leave me stuck. I have to try and see the future, on days when I’m alone, in order to be independent. Today I failed to do that.

I’m currently trying to remind myself that it’s not my fault but I’m not superhuman.

So I guess this one is actually asking anyone who is reading this to do do those around you a favour. Give them as much information about a situation as you can. Give them this much pre warning. Not only does this help everyone as we all feel more prepared for things we know are going to have them. But if you know someone who happens to need to see the future to live their lives, you may be helping them more than you realise.