Tag: Family

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.

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.

I don’t like questions like this.

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What were your parents doing at your age?

My parents were doing a lot more than me at my age. They were doing a lot more than I probably every will, depending on what you class a lot as.

By saying they were doing a lot, it makes it sound like I’ve been doing nothin, and honestly, that’s not true. But it is fair to say that my parents have done things by my age that I will never do.

Times have changed and situations are different. Comparing generations and people is unfair, as it doesn’t recognise this.

I may not have achieved as much as my parents, but I believe I have worked harder for what I’ve achieved than they ever have.

My disability doesn’t care that I have things going on.

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Tonight I’m going to a family party, I have mixed feelings about this for a varsity of reasons.

It’s going to involve me spending the night in my wheelchair and I’m honestly not looking forward to that. But I swear it feels like my body knows I’ll be doing that. My legs are hurting already, and I’m not even in my chair yet.

I’m also hoping that I can poo within the next hour, because if I don’t anything I do after that I’ll be stuck in for more than 24 hours. The joys of incontinence.

The next 24 hours of my life, are going to be as uncomfortable and rough as they are fun.

I’ve got to use ramps that scare me, sleep in my wheelchair, where the same clothes. And I know I’m going to be in my pain.

Just because something will be worth it, doesn’t mean its going to be easy.

Part of me can’t wait to come home to my girls honestly, and I haven’t even left yet.

I don’t like needing help.

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Given how much help I need on a day to day basis, you would think I’d be okay with asking for help. But in all honesty, I still struggle, even when I pay for it.

I have a cleaner come semi regularly, which I pay for. And I still don’t like needing their help, even though they agreed to it, and I pay them.

The only help I get that I’ve become somewhat comfortable with is that from my family or carers. And I think the only reason I’ve become okay with it is because I don’t have any other choice. That said there has been times I’ve injured and burnt myself, rather than ask my help

So this is your reminder that even even people have a lot of help, they may not be comfortable needing it. Regardless of how much help someone has or how long they’ve had it for. Asking for help can be big step for others.

When your clothes are wrong

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So this morning my clothes had a hole in them, and I didn’t realise until after I had them on. Now I couldn’t ask the carers to change my parents, they would have said no anyway for time related reasons. And I know this so I didn’t ask them.

You don’t get to change your clothes if your me, you don’t get to put new pants on, or a different outfit if there’s something wrong with it. There isn’t time when you need help, for choice, for experimenting with outfits. At least not with the care package that I have.

Maybe this is why I mad myself a uniform. To avoid being stuck in clothes that I don’t like wearing. But today that uniform failed, and I just had to put up with it.

This is why tomorrow I am waiting till after my carers to go to the family party, as it’s my only opportunity to be redressed and somewhat presentable for the situation.

But however they dress me, even if it’s wrong or uncomfortable, I am stuck with it. So wish me luck that I’m dressed as comfortably as I can be tomorrow. It’s already awkward for me to be at family events at inaccessible venues, without being dressed uncomfortable.

Trips

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So today I finalised some plans for upcoming short trip with family. And when I say short trips I mean short the longest one is overnight.

Now going to the majority of places leads to some element for an inaccessibility for me, I actually think that’s being generous. I don’t have the time energy or willpower to write down every instance of an accessibility I face. Honestly I think I would get bored. But the point being whenever I go anywhere I have to make the decision as to whether I’m willing to accept the inaccessibility that that will inevitably involve. There is ultimately something I have to sacrifice, if I didn’t I would never get to do anything. I’ve decided that it is worth it for these trips.

Most of the sacrifices I make surround my incontinence and personal care, for one particular trip it is no different. For the overnight trip I have to go without care for 24 hours, experience unknown inclines and access to properties, sleep in my wheelchair, and tackle the public transport in an area unknown to me.

The final part of this might not sound like much of a difficult thing to do. However growing up and an inaccessible world I know that it is possible that I may not be able to use the public transport that is supposed to form part of the journey I will be taking. In this instance this is actually the backup plan to getting a taxi, which I’m even more concerned about being accessible to me.

Now as I’ve said these are all things I’m willing to do, and to be honest there are things I try not to think about too much. I tried to focus on the fun I will be having, particularly this time, as both of these are for family parties. It is difficult though, and in many ways I am not looking forward to these events as much as I am looking forward to them.

Just remember you can never be sure of how much effort someone has made to attend something. What inaccessibility they might have faced? What they might be giving up? I’m not writing this to spread guilt. They have made the decision fully knowing what it would cost them and they still wanted to come. Consider it a privilege that everyone who can attend has. And don’t blame those that can’t, for not.

Christmas evening

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I want to say that I spent it alone, but that’s not true because I spent it with my girls, enjoying a curry.

And while this was my choice it doesn’t always feel like it was my choice to make, more like a choice that happened to me. Not that that makes sense from the outside.

In order for me to stay with my family I would have had to sleep in my wheelchair, and that is just something I did not want to do.

So you could say I chose not to spend the night with my family, or you could say I chose to be comfortable. It just frustrates me that I had to choose one over the other.

It seems my choice will always be my own comfort or the comfort of those around me. It feels like I will never be in a situation where it will be possible for all of us to be comfortable. And I’m always the one expected to make the sacrifice. I chose not to make that sacrifice tonight and my reward for holding to my word is being away from my family.

It’s not that I blame my family for this just that I wish the world was more accessible to me so that these choices didn’t have to be made. Or maybe it is that I blame my family and I just don’t want to recognize it. I honestly don’t know.

Why do people say they’ll do something that they won’t?

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This question has been really upsetting me recently.

I have been invited to a family event that I was happy to sort my own travel and sleeping arrangements to. Namely a train and sleeping in my chair, but there’s nothing new there in the world of inaccessibility. However someone said they would find away for me to travel with other members of my family, and they just haven’t.

I’m so used to not being able to travel with them, that it never crossed my mind that I would be able to, until the idea was suggested to me. Now it feels like my opportunity to be part of the family has been taken from me.

I know that may sound dramatic, but that’s honestly how it feels.

Did I mention that part of the new improved travel plan that my family member wants me to use, involves getting a taxi. When you’re a wheelchair users there’s no garuntee that I’ll be able to get in any taxi. And this just feels like a complication I don’t want to deal with on top of everything else

I thought for once I would get to be part of a family event, without feeling like I’m in the way. I thought that my family were willing to go a little bit out of the way to make me feel this way. I guess I was wrong.

Sometimes I think the world’s only accessible to me if I stay home, and then I realise just how inaccessible the world must be to me for me to think that way.

This is just one of many times people close to me have said they’ll include me like it’s no big deal, and then when it comes to the practicalities of them actually including me, it becomes a big deal. To the point where I’m not sure I even want to go this time.

But this time I don’t really have the option not to go, well I do but it’s a little more complicated. As my sister wants to go, if I didn’t go I would be left home alone, with the dogs. This would mean that I would need to cancel the carers even if I don’t go to the party, as it wouldn’t be fair for me to drop my sister from going to a party she wants to go to. So I would be home with the dogs and stuck in my wheelchair for a long period of time anyway.

I am an adult.

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As I write this I am at my friend’s. It is about 9pm, and my dad just called me to tell me they think I should go home. He says that it’s other people he’s worried about and not me and my ability, but it honestly doesn’t feel that way.

When I was out the other night with my sister he didn’t have this problem, and I was out a lot later. But then I wasn’t alone, so someone he views as more responsible was there.

I know he worries. But I honestly don’t think this is fair anymore.

I’m an adult. I am not less of an adult because I’m disabled. His worry for me is actually ableism.

Don’t worry I will get myself home.