Tag: Choice

Being alone

On By Katy DalyIn My Disability TruthLeave a comment

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.

Tonight I decided not to shower.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

Tonight was one of my designated shower nights. This means that the time that my carers are here is extended so that I can have a shower. Tonight I chose not to have a shower.

This is, of course something I’m allowed to do. I’m an adult, therefore allowed certain choices over my own care, within the restraints of the current care system, where I am. Yes, that last sentence was more of a Reminder for me than it was providing information for you.

But anyway, the point is I chose not to have a shower tonight. This means that I lose out on one of my appointed showers for the week. I cannot just have an extra one on a different day because I decided not to have one tonight. And I know this, I don’t like it, but I know it’s my reality.

So before I decided whether to cancel a shower, I look at what I’m doing between now and my next shower. I do this to try and determine how important it is that I have a shower. As I think you can tell, I decided that it wasn’t that important tonight.

Now, I know I’ve said this before, probably more than once. But when you need Carers, when you need other people to help you, the choices you get are limited.

The freedom to do what I want exactly when I want to do it, is again inaccessible to me.

This is one of the forms of an inaccessibility that I understand in the world. I don’t like it I don’t think it should be that way, but I do understand why it is. When care needs to be provided to a great number of people as part of a service, exactly when that Care is provided and how long it takes, and how many people are needed to do it, has to be decided on in advance. To make sure that everyone receives the care that they need. Like with any job, deadlines need to be met.

I hope I’ve said enough on this for that to make sense. I don’t really want anymore, the specifics of Care as a job at the moment, as I’m struggling emotionally, a little bit with this right.

Overall, I have mixed feelings when thinking of myself as a job for the people. Sometimes the formality helps, I feel like of a burden, when I know someone is getting paid to help me. But sometimes I feel like it reduces my life to someone else’s job. Like I don’t matter outside of that role. Like my needs and not important except to provide a paycheck to others.

But as I’ve said while I don’t like it, I understand why the system exists the way that it does. But that does make free choice of in this example, when I shower, inaccessible to me. I’m never going to be able to have a random shower at 4 am just because I fancied it. Or have an hour long shower where I just sit under the spray and feel the water.

And I know not having these decisions seems like a minor problem. Why would I want to do these things anyway? Honestly, I probably never would. But the difficult part is that the choice isn’t mine.

The choice is never going to be mine, not completely. All these little random things that you might choose to on a whim.

Making food in the middle of the night.

The random urge to clean, which frustratingly do you get, but I cannot act on.

Not being able to sleep in the middle of the night, so wanting to go for a walk, again, I get the urge to do this, but can act on it.

These little acts of freedom. The last minute experiences. I’m never going to get.

And in reality, the individual choices don’t mean a lot. But the lack of choice can be very emotionally draining.

I apologise if this post assumed a little little bit repetitive. I got caught in the emotion of its all and lost my way a little.

Additional disclaimer. The majority of this post is written using speech to text. Let me know if there’s any massive errors which have resulted in you not being able to understand any part of this and I will fix them as soon as possible. As I’ve said before please only point out mistakes, that effect understanding

Well this is a question.

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

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.

Image description: aside on view of myself tilted back in my wheelchair, looking towards the camera. I am wearing a completely black jumper with a large front pocket and black pants. There are two dog leads visible across my body. And a Bella a Caviler King Charles is visible under my feet.

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.

My care changed again.

On By Katy DalyIn BlogLeave a comment

So I got moved to a different run with my carers meaning the main carers I have will change. On the positive side the one that it’s changing to are actually able to come early in the morning. On the down side I had a really good relationship with the carers that I’m loosing.

One of the new carers is also someone I know outside of care, which was bound to happen, but is a first for me.

It can be a little disconcerting when my care changes without me knowing about it. Consistency isn’t something you get with care companies. Even when you do it can change at the drop of a hat. And as always, you dont get a say in it.

Choice is often conditional when disabled, if at all you have it.

But hopefully, with the better timings that these carers can do, it’ll all work out in the end. I am hopeful that by getting up earlier doing what I want with my life, will become more accessible to me.

Choice

On By Katy DalyIn BlogLeave a comment

I don’t think non-disabled people realise how much choice they get in the world. They get more choice in where they live, work, in almost everything they do than I will ever get.

Now I understand that there are other factors at play here to make choices in life, money and social status, to give two. But being disabled will always make the world inaccessible in one way or another, will always result in less choices being available.

If I had the money to buy a house, the cost of an accessible house or of making a house accessible to me, would be more than it would ever be for a non-disabled person. If I was not disabled, I would certainly have the experience necessary to go alongside the qualifications that I already have in order to get the job I want.

While I face the same barriers as I non-disabled person in the world, I also face the additional barrier of inaccessibility of ableism, that effects everything around me. Sometimes it feels like there is not a single decision I can make in my life that is not impacted by me being disabled. This can be difficult for me to deal with something, it can lead and often does lead me to feeling like I am not in control of my life for short periods of time. Like I don’t have a choice in anything I do.

This can make it difficult for me to watch non-disabled people turn down choices and decisions that they have in the world that I will never get. Choice is often inaccessible to me.

The world is simply more accessible to those who are not disabled.

Logically I know it’s not fair to say that they should take all the opportunities that they have, because many people will never get the opportunity to say no. I know that they deserve to live the life the way they want to, and absolutely should do that, without the position that other people are in hanging over them. This is why I would of course never say anything to anyone in person, it is not up to me to influence the choices they make because of my lack of choice. Especially because they are not responsible for the lack of choice that I have in the world. But emotionally this can be difficult for me to do with.

None of this means that I am not happy for them, the choices they make or where their life is going. It just might mean that I find it hard to express this alongside the other emotions I find myself dealing with. So just keep this in mind if you tell a friend about something new in your life and they don’t react the way you thought they would. Your progression in the world may be difficult for them.

Children are a choice, disability is not.

On By Katy DalyIn BlogLeave a comment

Social media is full of parents asking for different treaent in so many different situations simply because they are parents. And while not everyone agrees with them, many do.

Many in society, or at least on social media, believe parents are some how special. That the choice to have children comes with a deserved entitlement. So long as I live in a world that refused to grant me equity, this belief will always confuse and frustrate me.

I don’t understand why special treatment for a choice is supported.

I get it, being a parent is hard. But this is a choice you make, for often more selfish reasons than you are willing to admit. My point is parenthood is not selfless. It is a choice and people seem to want special treatment because they made that choice. And I am portrayed as a horrible person for believing they shouldn’t have it. That no one should have special treatment until we all have equity. Equity is more important than special treatment. Especially if you want special treatment for a decision you made.

I’m aware this isn’t specifically accessibility or inacessiblity related. But I think it speaks to the social opinion of accessibility. That we’d give different treatment to people based on the choice they made before we’d give equitable treatment to disabled people.