This is harder to answer than you might think.

What are you passionate about?

Honestly I’m passionate about a lot of things. If I think freely I think about dancing, music, writing, education, my pets, Inclusion. I could honestly probably keep going.

You’ll have noticed first on this list is dancing. I think it will always hold a special place in my heart. I used to dance as a child, professionally. And the freedom that brought me sometimes feels unmatched to any other freedom I’ve ever felt.

But there’s no career in wheelchair dancing. And try as hard as I wanted I was never going to be able to be a non disabled dancer was I? So there’s no career there for me either.

So I needed to find something else, someone else to be, and for the most part I did.

Sometimes it feels like my disability took my passion from me, other times I feel like it gave it to me.

It’s the reason I write, I think. It’s the reason inclusion matters to me. I even think that it’s the reason my pets matter so much to me. They see me for me, not me disabled, if that makes sense. And well music, I suspect that’s left over from dance isn’t it? But music’s wonderfully freeing so I’m not complaining.

But ultimately my disability took dance from me. Even if I found I way to be a professional wheelchair dancer, which I love and would do in a heartbeat by the way. I would never be able to be the dancer I could have been in my head, you know.

I’m not trying to be depressing. I think it’s important to deal with and accept these kinds of emotions, the disenfranchised grief of the life I was never able to lead. And that I can do so while also living my best at the life I was dealt. It’s a balance.

I think its a problem in the disability community that I’ve seen to force positivity all the time in our situation when it isn’t realistic. I think it comes from trying to prove to non-disabled people that we are happy as we are, and that we deserve to exist without the world trying to change us. Which is of course absolutely true. But we are also allowed to feel bad sometimes as all humans do, to wish life was a little easier or different. I think that’s completely normal. And not allowing ourselves to feel that if we do is trying to hold ourselves to higher standards than anyone else.

All this said, I think for me my passions change, they have to. For me to live my life. Today I’m passionate about having a good day, and I think that’s enough.

What are you passionate about today?

Home Alone

So I’m home alone while the person I live with does some errands. I don’t want to seem like I can’t be home alone, because I can be. That is until something needs doing.

One of my beautiful little doggies loves to cause problems and she might have just been doing so in the other bedroom. The personal lives suggested that I go and check it out, when I told them this. However it’s not that simple for me, simply going into the other room requires both a lot of steps and physical effort on my part. She’s also now also asleep next to me therefore I know she is not causing problems right now, and if I move to go and find out what problems she may have caused it will undoubtedly wake her up and therefore she may cause more problems. Add to this the fact that I am unlikely to be able to deal with any problems that she may have already caused anyway, and due to a broken door I am unable to stop her causing more problems.

Sometimes able bodied people or in this case people that are more able-bodied than me. Will ask things of me without considering or being aware of the steps involved specifically for me in what they are asking. They may not realise that they’re extra steps involved in doing something as a disabled person.

If I were to do what they have asked of me I would have to take care to put the things on my lap on to my bed properly, like my blanket and phone. As there are many steps involved in me trying to pick them up again should they fall on the floor, if I can do it at all. Next I have to struggle to open my own room door followed by the other room door that I need to go in. This will take a good five minutes just to get me into the other room at least, which is longer than it will actually take me to check if there is a mess or not. Like I said earlier even if there is a mess I will probably not be able to do anything about it.

So I guess this one is just a reminder that sometimes when you have disabled people to do simple things for you they aren’t quite as simple as you may think they are. While they may want very much to help you the energy required may not be something they are able to spare for you or to get the task done.

It’s not just that I have less energy than many other non-disabled people come out but the fact that doing something will actually cost me more energy than it would likely cost a non-disabled person to do it.

To any disabled or chronically ill people reading this, it is ok to make the best choice for you to conserve your energy and get the most out of your day Whatever this might look like for you. Remember it makes you smart and pragmatic in dealing with a situation that has components others may not be aware of. Don’t let their judgment of your actions dictate not doing what is best for you.

This post links to the idea of something known as Spoon Theory. Which provides a way of explaining an understanding how much energy disabled and chronically ill people have and maybe able to use or may use doing a certain task. This is definitely something you should look into if you are interested and I’ve never heard of it before. It is likely to be something I write about again as it is very relevant to me.

Explaining My Previous Post.

So my previous post was a bit of a filler. It didn’t actually make a lot of sense a nd I apologise for that.

My carers took it upon themselves to report me for my dogs because of a small amount of mess in one room on occasion. The report stated there was poo in every room. Very untrue.

They did this in realisation to my valid reports of them. I was very angry for obvious reasons.

It takes a lot of courage for me to advocate for the care I need to access the world. And I feel like I’m being penalised for doing that.

The rules are different when you’re disabled. The standard you’re held to is so much higher, simply because you need help. It is part of this that makes the world so inaccessible.

I know this isn’t a lot of detail, and I am sorry about that. I’m trying not to focus to much on something that massively upset me. I hope u put can understand that.

Voice to text

Voice to text is a wonderful tool, that in case you don’t know allows you to produce text from your speech though what ever microphone you have on the device you are using.

It is a tool which allows the production of text without the use of hands, and while it can simply be a tool that makes writing easier for some, it can be a necessary tool to enable writing for others.

For me it is a tool I occasionally use, when I want to write but I’m to tired to physically write. That is the main reason I use it. But occasionally I have to use it because I simply cannot reach the keyboard because of my little doggy Bella who has decided to sit in my way and who I don’t want to make move. I’ve included a picture of this below.

Image Description: A picture of the of my dog, the head has been cropped a brown caviler king charles resting on a laptop with a brown blanket underneath.

So voice to text does have it other uses. Like letting your dog sit where they want to.

But occasionally speech to text isn’t very accurate, and for that reason some of my posts or comments may not make total sense. This would depend on whether I find myself able at the time to reread and edit the text produced by voice to text. Most of the times I will, but sometimes I may not.

So please keep this in mind, not only for my blog, but for anything that you might read. Mistakes in texts may be present for a variety of reasons and the author may or may not be aware of them or able to fix them.

My best piece of advice would be if a mistake prevents you from understanding the text it is best to inform the author, but if it doesn’t perhaps think twice if you need to or not.

My family just made my own dog Inacessible to me.

As I write this I’m sat in my parents house. My brother wants to walk one of my dogs with his dog. And I don’t really want him to, as I cannot go with them where they want to go. But I’m not about to stop my dog having fun because I can’t go, that would be selfish.

My brother though seems to be completely oblivious to the fact that me not being able to go might be upsetting for me. I care for this dog. I pay for this dog. And yet my feelings don’t matter here. I guess that’s what being a parent is, your children come first right? But it’s so hard and honestly it hurts. My dogs supposed to be the one area that’s accessible to me. But my family and there ignorance have changed that.

I hope this post makes some kind of sense, it’s a difficult one for me to write.

Just be aware that if you know someone who may miss out on things due to the innaccessiblity of the world due to there disabilities, this can be incredibly difficult for them to deal with.

Tattoos are weirdly accessible

What tattoo do you want and where would you put it?

I got my first tattoo in December just gone, in memory of my mum, and it was a weirdly accessible experience. I say weirdly not because the way it was made accessible was weird, but simply because I wasn’t sure if the experience would be accessible to me at all.

I wasn’t sure how my body would react to a tattoo, and all the accessibility requirements in the world being met, which they were, would not have changed how my body may have reacted to getting a tatto. I worried about this, that my body wouldn’t play ball, and so I wouldn’t be able to get a tattoo that I really wanted.

Sometimes as disabled people are bodies are the reason that something is inacessible to us. And this can be a very difficult reality to for us to accept.

But luckily it went well, very well. And I now want another tattoo.

I’m debating between paw prints for my dogs, with there names in them or something Winnie the Pooh, what do you think?

Sometimes I have to be able to see the future.

I’ve been on my own today. For the most part it hasn’t been bad. It’s been quite nice if I’m honest, just me and the dogs. Until I wanted to take the dogs out for there walk, will my sister let me know that you probably wouldn’t be back in time to do this before my carers get here.

I thought I could manage doing it, it’s a struggle but I’ve done it before. And the truth is maybe I could have done it, if my world was set up in such a way that taking them for a walk today was accessible to me.

But I didn’t know that I would be taking them out alone, I didn’t plan ahead to ensure that it was. I did plan ahead to feed them on my own. I did plan ahead of to make sure I had water on my own. But walking them was not on the agenda.

And while I do feel a little guilty, I know logically that one day without a walk, is it going to hurt them. I also have to remind myself that is not my fault that I did not specifically plan things I did not know what happened. I cannot see the future. But as a disabled person not being able to see the future can often leave me stuck. I have to try and see the future, on days when I’m alone, in order to be independent. Today I failed to do that.

I’m currently trying to remind myself that it’s not my fault but I’m not superhuman.

So I guess this one is actually asking anyone who is reading this to do do those around you a favour. Give them as much information about a situation as you can. Give them this much pre warning. Not only does this help everyone as we all feel more prepared for things we know are going to have them. But if you know someone who happens to need to see the future to live their lives, you may be helping them more than you realise.

If I could be anyone for a day I’d be my dog.

If you could be someone else for a day, who would you be, and why?

A picture of myself stroking my Cavilier King Charles Dog, Bella. I’m wearing a blue top with a small amount of design on it. And the background to this photo is a pride flag and an Asexual Flag.

My initial response to this question was that I would be an able or some description. So that I could gain understanding of what it was really like to be an able. But in reality, I don’t know if finding this out would actually benefit me.

Either I would have a good day being an able which would undoubtedly make the rest of my life difficult. As I would know the alternative life I could leave. And I would never be able to have again. Or I would have a bad day which would mean given the way I feel I would struggle to see my own difficulties and inaccessibilities in life as valid and worth fighting for. This would not be easy either.

So I don’t think I’d actually benefit from being anyone other than me. Maybe someone with a different disability is an option.

Or maybe I’d just rather be my dog.