You have to be able to think into the future.

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.

Being left out.

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.

It’s a bit much.

A bad experience at a concert can really through me, and that’s what happened last night.

If you want to know more specifics about the experience you can see the TikTok I made here. A poor inaccessible experience, and that’s putting it lightly, throws the entire image I have of myself as a disabled person into question.

It makes me wonder why I even try, if I’m just going to be treated like that. It makes me wonder why I even try. It makes me feel more disabled. 

It shows me without a doubt that it’s society that makes me disabled, and that makes me sad. It makes me sad because I know there’s nothing I can really do about the way they want to treat me.

I just want to enjoy a concert. I don’t understand why that’s to much to ask.

Access

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.

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.

I wish life had a turn off notifications button.

So I’ve causing a bit of a problem or raising awareness depending on how you look at it, of the wheelchair accessible places on trains. Due to the wonder of the internet, what I have said got a little bit too popular, which means it hit the wrong audience in areas. But when it all got too much, I was easily able to just turn off the notifications for posts, and I’m here to say I love that.

Sometimes when people are being extremely ignorant, wilfully or otherwise. It can be hard not to continue to reply even when you know that you’re not getting through to them. Wilfully ignorant people have to want to learn something new in order for you to get anywhere with them. But this can be hard to remember in practice, especially when the truth is very often don’t want to hear anything other than their own experiences.

So you can end up going round and round in circles very easily. And it can be extremely helpful just to be able to turn the notifications off and have the circle be ended for you. But sometimes I wish possible to do in real life.

It can be hard to let things go even when you know that you definitely should. And I think it would just be nice if someone or something else could do that for you. Not necessarily permanently, but just so you could have a break.

In a world where we carry devices, we can be immediately contacted on with us all the time, I think that a leave me alone future for real life would be extremely helpful.

Maybe I’m the problem though. Maybe I just shouldn’t be drawn into such arguments so easily. But it’s one of the reasons I love social media, I get to argue my argue my points, state publicly whatever I believe is right, and my disability does not get away with me doing this.

Say what you want about social media, but it certainly has its advantages alongside its well known disadvantages. Perhaps so if you’re supposed to have a limited view of the world due to its accessibility.

I haven’t decided yet if I’m going to share more about the accessibility of trains, as has been my focus for the past few days. It’s not that I don’t believe in the importance of what I’m arguing for, I know that I’m right. But I just don’t have the energy to write about it. It really sucks when you never have the energy or motivation to do the things you enjoy, thanks fatigue.

Doctor who💙💙.

Image Description: A photo of a cinema screen showing the BBC Doctor Who logo with “interval 15 minutes, special message commences in” written on it and a timer counting down.

So this is another backdated post. Yesterday turned out to be quite busy day. After I posted a similar post to my recent Train post on this blog, on TikTok. That got a little popular so I mainly spent the day replying to those comments and getting ready to watch Doctor Who.

No, this is not a blog about Doctor Who so I’ll just say it was an experience and I recommend you watch it. I will definitely be watching it again.

And I don’t really have the energy now to write about the backlash I have faced from the Train post. But I wanted to sort summarise some things up.

First of all, children are optional. You choose to have them, or you choose to keep them. if you are in a situation where this is not optional for you this is because the option has been taken from you not because the act of having children isn’t optional. If you disagree with the statement, I don’t think this blog is for you, and that’s okay.

Second of all, wheelchair spaces are not also also buggy spaces. They can be used by people with buggies if no one in a wheelchair needs them, but they are intended for use by people in wheelchairs therefore they should and often do in policy get priority in these spaces. They are certainly not storage spaces. Again, if you disagree with this, this isn’t the blog for you.

If anyone would like me to share more on this issue, let me know. I’m happy to share links to my posts on TikTok if you would like to see them.

Thank you, and remember to watch Doctor Who 💙💙

Dear people who use trains with babies, can you not leave your buggies in the wheelchair spaces. Thank you.

Image Description: An over the shoulder photo of a buggies on the edge of a wheelchair space on a train.

As I write this post I am still on the train. It is worth noting that the buggy was moved so I could get in before the photo was taken. Before this, it was completely in the wheelchair space. The owner of the buggy is nowhere to be seen.

I know that children and buggies have every right to take up space, but please remember your buggies are optional, my wheelchair is not.

It’s one thing to leave your buggy in the wheelchair space with you there. But to leave it there while you go into another area of the train is even more surprising to me. Why would you do it? Why would you leave your belongings unattended like that? Is being in first class really that important to you?

While the buggy has been moved out of the area, it is now blocking the isle and other passengers. It is not as easy for me to move as it is for you to not leave you things in the way in the first place.

Another luxury that’s not a fair question.

What countries do you want to visit?

If the truth be told, I’m struggling a lot with the freedom that others around me have that I do not. Call me selfish or self-centred, but this is my place to tell the truth, is it not?

I feel like every new accomplishment that those around me make, is a stab in the heart, a reminder of what I will never be able to do.

Sometimes it feels like everything is that. Every party I cannot attend, every mess I cannot clean, every drink I cannot make for myself. Sometimes, it’s really hard to exist in the world when it feels like everything I can not do is everywhere.

For that reason, this question is not reasonable or sensible to me. It simply doesn’t bother thinking about it because it will never happen.

That said, I would love to visit America, and perhaps Malta.

I can do some things on my own.

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