Tag: Help

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

On By Katy DalyIn BlogLeave a comment

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.

I don’t want a shower.

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Im sat here waiting for the carers to come. It’s my shower night. The designated night at which I’m alloted a longer call to be able to shower. I had to fight to get it back because they took it off me certain days a week. And now I have it back I have to use it to keep it.

But the truth is as I’m sat here all I can think about is the fact that I do not want to shower tonight.

Control over your own life is inaccessible when you need help for a lot of things. You have to be greatful and take what others feel they are so gratuitously giving to you whether you want it or not.

It’s okay to need help.

On By Katy DalyIn My Disability TruthLeave a comment

I think for the most part this is an advantage I have over non-disabled people. That is that, for the most part, it is easier for me to admit that I can’t do. The shame I feel is not the same as that which non-disabled people feel, it seems.

I’m writing this post specifically because I’m currently watching some people close to me struggle with accepting what they can’t do, and what they need or could do with some help with. I honestly don’t know if they’ll ever get there, before it becomes a situation where they have no other options. But watching them struggle with accepting things that are almost the norm for me, makes me look at the help I need a little differently.

For the most part, I accepted a long while ago that I will always need help. that there will always be things I cannot do, and that this does not make me less of a person. But watching others struggle with that, makes me wonder if they do not see me the same way. In other words, if they see themselves as less for needing the help that they do, does that mean they see me as less as well? Logically I doubt it, but part of me still wonders.

Though it took me as someone who was born with their difficulties and has needed help all of their life, time to accept the reality that I need help. Some people do not realise this, as they think if nothing has changed for me, there is in essence nothing to accept. Understanding that this is not the case, and that acceptance of a reality you do not want is difficult for anyone whether or not it is true, is important. But I imagine that it would be specifically difficult for anyone who is experiencing this as a big change in their life. Needing help is difficult to accept especially for those who are not used to needing it. I have to remind myself of this, and that they are not in fact judging me for the help that I need, when they are struggling with their new reality.

So, to anyone that is reading this, while facing the reality that they need help, or may soon find themselves in need of help, I say this. Needing help for anything does not make you less of a person. It is okay to ask for help. It is okay to need help. There is no shame in it. And from experience it is easier to have that help in place if you can, before it becomes completely necessary to your life, and as such something you have no choice in.

Something else to remember is that it’s okay to struggle emotionally with needing help, with things changing for you in whatever way they change. Your emotions are okay, and they are valid. Just try not to let them prevent you from needing the help that you need, try not to let your own feelings make you suffer. I say try specifically because I recognise that this is difficult to do. That even I, despite knowing my reality made decisions to avoid needing help and though I’m not proud to admit, to look less disabled, which ultimate resulted in me needing more surgery.

I hope excepting the help you need becomes easier for you, it certainly has for the most part for me. And that you are able to live your best life possible.

Lies

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I’m pretty sure my carers lied to me again. They told me that I was their last call and wanted to come early because of that and then proceeded to be half an hour late when I said they had to come on time. And while I admit that I have no way of knowing whether the carers were lying in tbis instance. I have caught them in a lie before.

Honesty is important for everyone. But it is especially important when you find yourself relying on others, like I as disabled do. If you lie to me I often have no way to verify what you’re saying. I have to take your word for it. This applies to carers or anyone else. The world can literally be more inaccessible to me if you lie to me about it. This issue extends far beyond my actual carers, though I’m pretty sure it’s in their job description (or it should be) not to lie to their clients.

There’s a long list of places I have investigated the accessibility of, only to get there and find the place itself is not accessible. Sometimes this is very obvious access issues like say a step, which I didn’t think you could misidentify as an access problem but apparently you can. Other times it can be a more complex issue that I wouldn’t expect someone to be aware of, like the size of my wheelchair or the turning circle that it needs.

Back to the step for a second, because that was an interesting story, to say the least. I was told on more than one occasion that a place was accessible to me, despite one place having a step at the door, and the main part of the other place being on a whole other floor, with only steps to access it. On both occasions, they gave the reasons that they thought they would be accessible because the space in the business was big enough for a wheelchair user, once they get over the step. That’s a pretty big barrier to accessibility. To make things worse on both occasions I asked directly about step-free access. On one I only found out once I got the business, on the other I thankfully discovered it after a closer look on Google Maps so didn’t waste as much time.

The point of this post is to say please just be honest. Be honest too everyone, but especially those who rely on that honesty. Even if the truth is annoying it’s less annoying and to be frank less hurtful than a lie.

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.

Internalised Ablesim

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So here’s something I’ve just realised as I sit in bed. I wanted my earphones.

But there were inacessible to me, in other words I couldn’t reach them. But instead of shouting my sister to get my earphones for me. I finished my drink and asked her for another, and when she came in to bring it to me, I asked her for my earphones.

I often do things like this without thinking. Think of something else I need, or sometimes create something else I need, in order to justify asking for the thing I actually want by asking for something I feel is more valid to ask for.

In doing this it has just occurred to me that I’m hierarching my own needs, deciding what’s important for me to need to help with and what isn’t. So I don’t waste the time of those looking after me with something unesssary.

This is obviously now, it occurs to me, internalised ablesim on my part. Convincing myself that I some things I need or want don’t matrer.

I’m going to think on this so I may come back to it.

Why do I ask for help with things I can do.

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A lot of things feel inaccessibile simply because of how long they take me to do. Even if it’s possible for me to do something, therefore the task is accessible, sometimes the amount of time (and energy) something takes make me not want to do it that often.

It just took 40mins for me to pick the washing basket and the washing up off the floor. It would have probably taken my sister a minute and a lot less energy.

You see this is why I sometimes ask for help with things I can do.

It might seem lazy to people who don’t know, and for a while I felt like I was being lazy in doing it. But really it is energy and time saving to get help.

So what does this have to do with accessibility?

It’s hard to determine whether a task is accessible sometimes. If I know I can do it, but I choose not to, sometimes I feel bad about it.

But in reality when I need help the task is not accessible to me and when I don’t need help the task is accessible to me.

Therefore the accessibility of a task can change, dependent on many different things, not least my energy. But also the tools I have available to help me.