Tag: Real Life

I’m never going to get to live any sort of life that I want to.

On By Katy DalyIn My Disability Truth2 Comments

The stuff that’s been bothering me lately that I don’t know how to deal with, let alone write about, has got me thinking about this. I know I’m not supposed to focus on that, but it’s the truth, I will never get to live the life I feel like I’m supposed to live. And just right now I don’t know how to get over those feelings.

I know they’re no good to feel, that they won’t get me anywhere. But you can’t really stop yourself feeling things, just because you know that feeling them isn’t going to get you anywhere.

So, for right now I’m a little stuck.

If you say it, you should mean it.

On By Katy DalyIn Blog6 Comments

So floating around on the disability areas of social media today has been a question to the effect of “What is your worst experience of exclusion?”, so I figured for todays post I will answer that again here.

For me my worst experiences of exclusion are failed promises of inclusion. Now I know sometimes this can be more difficult to accomplish, but more than once it’s been easier and they’ve still failed. The part you have to really understand is whether I should or not, I don’t expect to be included in things. The truth is, exclusion is and probably always will be, my norm. I don’t expect an invite to the party. So why dangle the invite in front of me, if you have no intention of putting the work in?

Seriously, why are you doing that to me? To anyone?

If you genionely want to put in the work to include someone with a disability in something, then put in the work. I really don’t think this is to much to ask. And if it genuinely falls through, after you tried, then tell us. Don’t just ignore us, and think we forgot.

From experience, when you’re not used to the invite and you finally get it, it’s not something you’re going to forget. In fact you are probably going to hold on to it more than others, you will not forget. I certainly did not. I really looked forward to going to this party, and they said they’d find a way for me to be included, and then they just didn’t. I don’t even know if the party happened, I presuming that it did, because why wouldn’t it? But the basically just cut me off and stopped mentioning it. I honestly don’t know why.

Just tell disabled people the truth. We deserve that at least.

So go on then, if you find yourself reading this and you feel like answering – What is your worst experience of exclusion?”

Going out

On By Katy DalyIn BlogLeave a comment

So I’ve been invited to a family event and thankfully the place is fairly accessible. I’m quite happy with the gap in the bench at the table, and the ramps, but to be honest that’s about it. I can’t get myself a drink though, which is probably both equally a blessing and a curse.

Its still odd for me to be invited to things, I’m honestly not sure I’ll get used to it. Before coming here I contemplated not coming multiple times, I figured it would just be easier for everyone else and for me. But I’m glad I came, I think.

One day maybe I can go somewhere with people and not feel anxious that I’ll get in the way. Living in an inaccessible society, causes lasting emotional damage. I don’t think I’ll ever get used to being invited anywhere, to being wanted.

Even the friends I see regularly, I’m still surprised they want me around, but somehow they do. That the problems I cause are worth it for them.

Logically I know it’s not my fault that society is so inaccessible, but emotionally? It’s a struggle to remember that I am not the issue. That I deserve to be involved in things even if it’s difficult.

It’s okay to not feel like you belong, it’s not your fault. Just try not to let that stop you from doing something you want to. You deserve to have fun.

Oh the weather outside is… Sunny?

On By Katy DalyIn Blog2 Comments

Okay, so I know it’s not Christmas, but I couldn’t resist titling this post that way. It’s not actually a very positive post, well it sort of is, but this makes me feel even better about it.

So today I went to see some family, and I had to stay in the garden. Surprisingly, for where I live the weather was okay, but that doesn’t mean I was very happy about the whole experience. Obviously would’ve been worse. Had the weather been bad, but either way it’s uncomfortable for me to go to places where all I can do is wait outside.

The reality of most housing not being accessible to you, is more than the fact that you are often limited in the housing you can live in. For me I will likely never leave my current home, it was very difficult for me to find somewhere that’s even partially accessible. But also that you often cannot visit anyone in there, homes because you cannot get into them.

There is almost no one out of all my friends and family that I am able to go and see due to the accessibility of the house that they live in. And if I’m being honest with myself, this is something that I find really upsetting.

Logically I know it’s too much to say that I wish they would only live in accessible housing, but also, I wish they would live in accessible housing. I wish that it wasn’t too much to ask to want to be part of my family.

It gets really frustrating when you are the one that has to make the compromises in order to spend time with family, and I am yet to find a way round it. Having them come to my home is also difficult because it means I have to get my home ready for visitors. This is something that I’m not able to do, and don’t worry about the way that anyone visited my home judge me for that. For this reason, I don’t have a lot of people visiting my home and that is honestly the way I like it.

Another part of the reason that I don’t like having people over in my home is because I have a lot of strangers in my home regularly, in the form of carers. It makes me not like the experience of having other people in my home if I’m honest, whether I know them or not.

For this reason, it was strongly suggested that we meet somewhere else in order to spend time together. Mainly because given where I live there is every chance that it might rain, and I didn’t want to have to get wet, as I can’t easily change. Though in this instance that didn’t happen thankfully, it was still a risk, and not one I was very comfortable in taking but needs must.

From experience if I don’t take risks such as going to people’s inaccessible homes in order to spend time with them. Or going to events at just about accessible venues, which are still inaccessible as far as I’m concerned, then I’m often blamed. In the past it feels as if others believe I have chosen not to participate in the get together. Rather than it being the venue and the lack of planning on the organises part, that are the reason I’m unable to attend.

As a result of this happening repeatedly, I haven’t internalised this as being something wrong with me. As if it is my fault, I am not able to spend time with friends and family and therefore I must compromise when I can in order to do so.

Today, as I have said, it went well but it doesn’t always. And I have to admit I’m left wondering when others will compromise to spend time with me? Honestly I know the answer is never, as non-disabled don’t find themselves in a position where there need to compromise in the way that disabled people do.

But it would be even better if more homes could be accessible and I would I simply be able to go and see those that I care about in their homes.

More homes need to be accessible to disable people. So that we get to be part of society and our families properly.

Please forgive me if this one doesn’t make a lot of sense I can’t really figure out why but I don’t feel like it does. I hope you get the gist of it anyway.

I swear my incontinence and disability are just spiteful.

On By Katy DalyIn My Disability TruthLeave a comment

Minutes after my carers left this morning I did something I have never done before, which accidentally caused my catheter to become unclamped soaking me in pee. But this had to happen on a day where I am going out tonight so have cancelled my evening call. This means that even though I have Febrezed my clothes, thank you mum for that little trick, I will technically have to be wearing damp clothes for something close to 18 hours.

It had to happen today didn’t it?

I just feel like what could already turn out to be a rubbish day, I’ve got concert tickets but not accessible ones, so they may just turn me away. Has had the worst start that it possible could.

This is why I almost always wear black. It’s not a fashion choice really, but something that hides the fact that things like this happen.

I hate it. All of this. It makes me feel like a child, and I kind of just want to cry about it and go back to bed. But I can’t do that as nothing can really be done about any of this. So if I decide to give up I’ll just be ruining the day for everyone else. So I’ve just got to pretend this didn’t happen, smile and move on.

Today already feels like to much, and I’ve not even been awake an hour.

You have to be able to think into the future.

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When you’re disabled, you have to be able to think not only about everything you currently need, but about everything you might need being left alone.

As I write this, I am sat at home hungry because I didn’t think about the fact that I would want food when earlier I wasn’t hungry. And because I am home alone, I’m not able to get food until the person I live with comes home. Therefore I’m just hungry, and essentially waiting for someone to come feed me.

If I had thought about it more, I would’ve had something to eat before they left or been left with something like crisps that I could eat on my own, but I didn’t. I just spoke to the person with her basically blamed me for not asking for something to eat before they left. But then I wasn’t hungry, and I wasn’t thinking. It’s hard to ask for things that you might need when you don’t need them. And the only person that suffers when I don’t do this, it’s me.

I don’t think anyone who isn’t disabled has to think like this. Sure there are sometimes when we all have to think and plan for the future, but when you disabled you have to do it nearly all the time. And that doesn’t make me any better at it just because it’s more important to me. You would think it would, but no.

I hate that even the basic things in life aren’t accessible to me if I haven’t thought ahead. And I hate that if I don’t think about this, I’m the only one that suffers for it.

I’m hungry.

Send food.

There’s no nice way for me to say this.

On By Katy DalyIn My Disability TruthLeave a comment

Sometimes I wish what I could do was the line for whatever everybody else is able to do.

I’m very aware of how selfish this is, but sometimes it just gets really old to watch people do what I never will be able to. It’s hard to always be the one that’s okay with being left out.

It’s hard to always have to be the bigger person. And if I am honest I don’t think I am as much as I want to be. I don’t really want to stop people doing things. I just don’t want to know that they are doing them.

It’s just hard to see every day.

Being left out.

On By Katy DalyIn Blog1 Comment

This weekend my neighbours are having a party. Everyone was invited apart from me. It was just assumed I wouldn’t want to go.

Attending things with other people can be so difficult that I don’t actually know if it’s just better to not be invited sometimes. I don’t think I’m able to make a fair decision about whether I would or wouldn’t want to go to these kinds of events. Simply because of how awkward it would be for me to attend. It’s not a fair decision if it’s bias.

I just wish I’d be able to do things with those around me without it being an issue. Without the idea that maybe it’s better that I wasn’t invited, maybe being right.

Access

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When the wheelchair accessibility of a venue is so rubbish but they won’t let me leave without making my carer leave to who likes who we were supposed to see as well so you end up sitting in the corner watching How I Met Your Mother. This is why I go everywhere prepared to sit alone in the corner 😂😢

Image Description: picture of a clip from How I Met Your Mother on a phone, showing Lily and Marshall the captions read “there occurred a game-changing emergency.”

Make of this what you will. May or may not explain more later.

Concert fears.

On By Katy DalyIn Blog4 Comments

So tonight I’m going to another concert, and when you do this as a wheelchair user it always comes with a level of anxiety, especially when I go to a new venue.

Concerts are an odd experience for me, the music can help me feel free and part of a group, while the environment can make me feel more disabled than any other environment. It’s always hit and miss.

This is a concert I’ve been to before, and last time it was amazing, but my experience was helped massively by the venue. By the fact I could go in the crowd with everyone else, and be near the front.

The last thing I want is to be at the back, I’d rather be in the crowd and unable to see, rather than in some special area. In the past I’ve been in this area and unable to see anyway. The area isn’t really about me being safe, it’s about protecting the venue from being sued in anyway and I hate being in it.

But this time I know in advance that I will have to be in it, which I’ll admit it is better than not knowing. However it’s still causing me a great deal of anxiety. I’m hoping the experience will be worth the stress that venues place on me because of my disability. But this isn’t something I will know until I get there, but I can live in hope for a good experience right.

Wish me look.