If you wear glasses you are Disabled.

The Definition of a Disability is: a physical or mental condition that limits a person’s movements, senses, or activities.

Those who wear glasses have some form of limitation to there sight, they are technically disabled. It’s simply that society has accepted the mobility aid that they use, glasses.

This is interesting as it shows the way society has accepted some disabilities, in a way that doesn’t continue to exclude them. It is completely normal for someone to wear glasses. I wonder how people would react to disability if it was normalised this way.

One day I hope that all disabilities and disability aids are accepted the way that wearing glasses is. This will be the true inclusion of those with disabilities in society 

I have more I want to say on this. I might but as always I make no promises. This might help though if I don’t end up saying more.

If you say it, you should mean it.

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

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?

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.

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.

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.

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

I didn’t think you’d want to go

So the person I live with got invited to a party by a neighbour. I was also invited, apparently, but they told them I wouldn’t want to go. And I guess, it got me thinking.

I don’t know if I would actually want to go. I don’t know if that’s a fair question to be asked of me, when it feels like I definitely don’t get to make that decision.

Where the party would be I wouldn’t easily be able to get to. So I shouldn’t want to go anyway. I can’t actually work out if I want to go or I want to want to go. Decisions aren’t fair when they’re already made for you.

I’m angry that this one was made for me, but it was already made for me, before it was made. So I shouldn’t be angry, and yet.

When do I get to make a fair decision that isn’t controlled by the world around me or by my brain?

I’ll be in my room if you need me.