Tag: Family

I can do some things on my own.

On By Katy DalyIn Blog, My Disability Truth2 Comments

So after being out all day yesterday, the person I live with seemed surprise that I told them I would be okay to handle what we’d being doing today on my own if they wanted to stay home and sleep.

To make it clear I won’t really be on my own for a lot of the day, but because they won’t be with me for all of it, for part of the day I would be on my own. Specifically while we get to the place where we’d be meeting family.

This is a well practiced route that I do almost every Monday, when we go for a family breakfast, so I’d be fine. In some ways it’s actually easier for me to be out of the house on my own than in the house on my own. My house is just that inaccessible in parts to me. But still they seemed surprised that I’d be okay to handle this on my own.

I think it’s easy to forget when you see how much help I need on a regular basis that I don’t need help for everything. That although some things are easier for me to get help with, it doesn’t mean I couldn’t manage them alone.

Interestingly as I write this I had to call for help, but remember what I said about my house not being that accessible to me? Blame the environment for that one.

Anyway, the way they said this was like they expected me not to go if they weren’t going, and honestly that annoyed me maybe more than it should. Like I said this is something we do every week, and a few times I’ve been too tired to go, but I’ve never expected them not to go because I wouldn’t be. It’s like they forget I am an adult that can do things without them. Maybe they do? Maybe everyone does? Maybe I do? I don’t know.

There’s something else I want to add about this weekly get-together. It started years ago, and initially, it wasn’t something I was invited to, which really upset me, and on some level, I think it still does. When I questioned why I wasn’t invited, I was told they just didn’t think I wanted to go. And I don’t know if they genuinely believe that, or if it’s just what they tell themselves to make themselves not feel guilty, or which answer to that is worse.

I personally think they decided that it would be too difficult for me to get there, and so decided just not to invite me. I never questioned it because for a while I didn’t actually know it was happening. But this wouldn’t be the first time my family have done something like that. Made the decision for me about going somewhere or doing something, and so never asked me about it. They once went to a theme park when they knew I wouldn’t be home.

This isn’t something I can bring up with them, as it will definitely start more drama than it is worth. I doubt they even remember what they did. But I do. I remember the exclusion, feeling like I was too much to be included even by my own family. That’s something that I still struggle with now. I often say I don’t want to do things, if I think having me involved will make things more difficult for others. It’s not only my family that have excluded me in this way throughout my life, but it definitely hurts worse when it comes from them.

But back to today, I will be going to the family breakfast, whether or not I have to get there or back to my dad’s on my own. It will be happening. I deserve to be involved in things, I deserve to be involved in this family. And this is how I want to be involved. Plus, I really like being able to have chips for breakfast.

Just remember that if you’re reading this, know that you deserve the same from your own family whether or not they make you feel that way. You deserve to be part of the gathering, part of the memory, part of it all. And if they exclude you, it is always a choice, there could’ve always been a way to include you. That is a decision they made, it is on them not you

A cross.

On By Katy DalyIn Writing PromptsLeave a comment

What’s the oldest things you’re wearing today?

It’s a necklace that belonged to my grandma. I’m not religious at all, I wear it for the family history rather than anything else.

When I was younger, my mum used to give it me on difficult days or days she said I needed luck. I started asking for it on days when I was nervous as I got older, as it made me feel like my mum was there with me.

When she was dying she said I could have the necklace, and I put it on then and haven’t taken it off, apart from when I had to get the chain repaired, since.

I don’t really like holidays anymore

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

What is your favorite holiday? Why is it your favorite?

I used to love holidays.

But as I’ve grown up I’ve realised just how small my world seems to be compared to those around me. How many options they have to spend with other people that aren’t me, and how few options I have.

Holidays are difficult for me, not wanting to get in the way. Feeling like I’m around because people think that they have to have me around, rather than them wanting me around.

Part of me would just rather to be alone on me own for most holidays. But I can’t do that without the person I live with needing to be with me. So I’m kind of stuck going so they can go.

This is before we even get the fact that of the limited family members whose homes are accessible to me, none of them are easy for me to get in.

So I guess this one is a reminder that not everyone likes holidays. Holidays are not easy for everyone. So be kind.

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.