Tag: Cerebral Palsy

To my phone. 

On By Katy DalyIn BlogLeave a comment

Where would you go on a shopping spree?

I know that online shopping has its criticisms, but for me it’s the most accessible form of shopping.

It’s a type of shopping I am able to do on my own. I can by whatever I want, with in my budget,  and have it delivered to my house.

I can manage in a standard shop, but there are usually some points I’m forced to ask for help. And I’ve worked on that to the point where my anxiety doesn’t stop me doing it anymore. But it doesn’t mean that I like to ask for help. So ways to avoid it are always good.

Names.

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

What is your middle name? Does it carry any special meaning/significance?

My middle names come from other family names. One comes from a grandparent and the othe d from one of my siblings who died before I was born, so yes that they do have a special meaning.

The same applies to my first name. My name is Kathleen, but I went by Katy for years, to the point where I didn’t know this was my birth name until later in life.

But the way Katy is spelt is also significant. Being born with Cerebral Pasly, meant that didn’t know if I would be able to read or write until I reached that age. The joys of the unpredictability of brain damage for you.

This makes the fact that I enjoy writing even more ironic, and I hope shows you can’t judge a book by its cover.

Why do I keep all the lights off?

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Most of the time I keep the lights off in my house. If I don’t all I see is the damage I’ve done to the walls in my chair.

A combination of a house not built for a wheelchair user, and frankly shoddy council work. You can literally wipe the paint off, believe me I have. And because I can’t work a full time job, due to a combination of my disability and the ablesim and inaccessibility of society, I’m unable to do anything about it.

Maybe if I could work, if I could earn money. If I could have more than just enough to live on, things would be different.

But they’re not different.

So I skip the perfect homes, admire the damage and try to feel less alone.

I sometimes wish the things I couldn’t do didn’t bother me, and wonder if I would live a happier or a calmer life if that were true. But they do bother me. The walls in my own home can be difficult for me to look at. The homes that are more than just houses, make it harder. So I don’t look.

In my own house, the lights stay off as much as possible. And I cover what I can, though it’s not all I wish I could, of the walls. And I try to get on with my day and pretend it doesn’t bother me, and hope that one day that’s the truth. Or, you know, I become a millionaire.

Things that are inaccessible to you if you rely on benefits.

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Anyone reading this who thinks that people choose to be on benefits can keep their opinion to yourself.

I will probably always rely on benefits, this has something that has taken me a lot of time to come to terms with, and I’m still working on it honestly. I have tried to get a job, but despite my qualifications my disability seems to be a massive barrier that I’m not sure I will ever overcome. Even if I were to get a job there would be certain benefits I would still receive and rely on. But that’s not the point of this post.

I write this post, with a little shame towards the jealousy I feel that fuels it. As I’m unable to get a job, there are many things in life that will remain inaccessible to me.

I will not be able to buy my home.

I will not be able to decorate the home I do have in a way I actually like.

I am unlikely to be able to go on holiday.

Or have any experiences that cost money.

Essentially being unable to work means I will always be on a low income and then have to live by that income.

Though I don’t like it, I understand the economic motivations behind this. The fear would be that if you gave people a comfortable life that they could enjoy on benefits, that no one would want to work. Therefore working is a motivator for a more enjoyable life.

And while I don’t feel that this is the case, even if it were true, it doesn’t consider those who are unable to work. Therefore those who are unable to improve there life in any way.

Now don’t get me wrong, my life isn’t bad. And I am relatively comfortable. But I am frustrated by the fact I am stuck in this life and unable to improve it because working is inaccessible to me.

International Wheelchair Day 2024

On By Katy DalyIn Disability Pride ♿️, My Disability TruthLeave a comment

So today is International Wheelchair Day 2024.

And funnily enough I’ve just had my wheelchair fixed. My wheels bring me freedom, I’d be stuck without them. They are the reason I get to be a person.

But the truth is the world isn’t built for people like me. It’s difficult using a wheelchair, because of the inaccessibility around me. Being in a wheelchair takes a lot of effort and planning just to get out of the house some days. Memorising routes and hoping nothing is going to block them. Not being able to go to concerts and have the same experiences as everyone else.

But without a wheelchair I wouldn’t even have the freedom I do now. Yet growing up as was told I needed to do as much as possible, to not become “wheelchair shaped”. Despite this being my eventuality and it causing a considerable amount of discomfort to attempt to delay it.

Using a wheelchair isn’t bad. Not walking isn’t bad. Mobility aids and physio need to be given for the best outcome of the individual, and not simply to push someone towards the societal norms that can actually be damaging to them.

Wheelchairs are not bad.
Mine is a life saver

Image Description: This picture shows myself facing the camera in my wheelchair with Imogen Ava Daly sat on my right and Bella sat on my left. Both dogs are looking at the camera.
Image Description: This picture is art by @Colourblind_Zebr. It’s shows a purple manual wheelchair with the text “My wheelchair is my FREEDOM not my PRISON”, with freedom and prison written in rainbow.
Image Description: This picture shows a picture of me slightly in the distance, on an angle facing left but looking towards the camera. Bella is stood in front of me, and Imogen is stood behind me with her front paws on my knee. We are all looking at the camera.

Independence can surprise others.

On By Katy DalyIn My Disability TruthLeave a comment

And I’m not sure that will ever stop surprising me.

Tonight I let the carers in myself, as I do periodically. These were carers that hadn’t been before when I had been in on my own. and so they were very surprised.

They kept saying that it was good for my independence. But I honestly don’t like them judging my independence, and praising me for what they think is a positive step.

To me a big part of my independence is relying on others, it is being able to ask for the help that I need when I need it. As this is something I have always struggled with.

It’s important to remember that independence is different to everyone, and that despite what the word may mean, it doesn’t just mean doing things on your own.

Additionally it’s not helpful to praise disabled people for doing things that non disabled people do all the time, like opening their front door independently. This is how inspiration porn starts.

It honestly gets old that people are so impressed with me living my life. I didn’t ask for their input and I really wish they wouldn’t give it me. You would think that carers in particular would know better.

Just keep your comments about people living their lives to yourself.

Why the time of a call might matter to the person you care for. 

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From the perspective of someone who’s had care for more than half there life.

It can seem pedantic like someone is not respecting the carers job, if they get upset when a carer tries to come early for a call. But it’s not that simple.

I want to start this. It’s saying that I respect carers and the job they do. I believe they deserve respect, better pay, and better work environments. But in terms of this post, that’s the last time I’m going to take their side in this situation. This is about what it is like to have carers, not be a carer.

Nobody wants carers. Nobody wants care. Many people are acutely aware of the fact that they are in the minority with what they need help with. And it’s draining. You, as the carer are the one that chooses to be in that situation where you are providing care. This is your job, a job you chose, as much as anyone chooses to work. And if you didn’t have a choice in getting a job as a carer,  that is not the fault of the person or people that you care for. Remember that.

If a person needs care, whether that is part of what they need to get through day to day or getting them independence. It doesn’t mean that accepting the care is going to be easy. Personally, it took me a long time to accept that I needed care, sometimes I still struggle. And I am a person who’s needed the kind of help I now get from carers her whole life. But getting it from carers was still an adjustment, that I’m still adjusting to.

One of the most difficult parts about needing carers for me is the tuning. It’s the fact I can’t just go to bed when I want or get up when I want. That it has to be so regimented to ensure that I get it. Can you imagine for a second if you had to get up and go to bed at the same time every day? And someone came to your house just to make sure that you did as you were told.

If you get your care from a company, and you’re very lucky you might get your care at or near a time that you actually want it. If you’re extremely lucky they might actually stick to that. And if anyone is reading this thinking why don’t you just get a PA (meaning self employed carers over a company) they are a lot more difficult to get than it might seem. Companies provide a level of consistency and security in care, that some people need.

Whether or not you get to choose the time of your call, which most people don’t have the luxury of doing and have to compromise.  The time that they do come can be very important to someone. Knowing what time they come and expecting them to come at that time, can feel like the last part of control you have in an area where you feel powerless.

Like if I have to do something at that time, you will do it at that exact time. And it can be difficult to have that time altered, as you feel like that little bit of control you had over your own care is gone.

I just don’t think you can understand what it’s truly like to have carers until you’re in the situation where you need them. Some seem to view it as a choice we should be grateful for. But honestly, it’s not, and it’s hard, and I think carers need to remember and respect that.

You made the choice. We didn’t.

It always feels like that’s why 

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So I just found out that certain members of my family are going on a hig trip abroad. Neither I nor my loose family were invited this trip.

I feel like I’m the reason none of the family got invited to this. I know that’s a jump logically. But I feel like if I wasn’t disabled maybe they would have been invited.

Sometimes my disability feels like it causes the problem even when I can’t be sure that it does.

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 hate dropping things.

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I often drop lotto things on the floor that I can’t pick up myself. It bugs me and there’s nothing I can do about it. The person I live with doesn’t notice little things on the floor, so asking them if they can see anything on the floor isn’t a completely fool proof way to find out if there’s anything on the floor.

Relying on people is emotionally draining. Even when you know they’re trying their best. In fact I think when they’re trying their best it makes it worse, as you know you logically it’s not fair to be annoyed at them.

So I become annoyed at myself for being unable to solve my own problems and therefore relying on them.