Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
This morning my carers were late and so it left me alone with my girls. Waiting for my sister to come back something happened with them that I was unable to deal with alone.
Don’t worry they’re completely safe and my sister will be back soon.
But it got me thinking about all the things I can’t do for the girls. About how much of a better life they might have if they could be looked after by someone who was able to do more for them.
I love them. But I feel like I let them down by just existing.
What brings a tear of joy to your eye?
I started to answer this question, before realising I misread it in a negative context, and honestly I think that says a lot about where I am emotionally right now. But never mind lets try to answer it.
When I read the question properly, I find that it’s actually quite easy to answer. My girls. My dogs.
I love them so much.
They sometimes seem to be the only beings on the planet to see me properly.
I’ve added a picture of us all below so you can see how cute they are.
This is a photo taken of my me and one of my little girls (my dogs) the other day. I find it such a cute photo the way she is looking at the camera and her tounge is sticking out, melts my heart.
I did not realise until after the photo was taken thar you could see me quite clearly emptying my catheter into a bottle in the photo. No comments on the colour of my urine please, hydration has been a life long issue for me, mainly due to my own issues with excepting my incontinence.
My incontinence is a part of my disability that I have always struggled with. I have no doubt that this is due to societies view of incontinence. I struggled so much with this that I had several minor procedures years ago in order to avoid avoid having any type of permanent catheter in. Eventually I had to put my medical needs over my own social anxiety and have one though, and it was the best decision.
But photos like this still make me nervous. Being open about my incontinence still makes me nervous. This may come as a shock to those who know me, and to those I am open about my incontinence with. When I talk about my incontinence I do so abstractly, as if I’m not even a part of my own experiences with it.
I’m trying to get better at it though because I believe incontinence is nothing to be ashamed of. But sometimes it’s hard to live by the things we believe. But I’m trying to do better, this photo is a way of me trying to do better.
Here’s another photo from about a year or so ago, again with my little girl. In this photo my pad is visible. I actually didn’t realise that anything I might not want the world to see was showing in this photo until after I shared it. While I ended up leaving the photo up, it did cause me a great deal of anxiety at the time. If this was a photo of just me and not me and her I would have certainly removed it.
Describe one habit that brings you joy.
But there always seems to be my dogs. Like they see who I really am, who I’m meant to be. We don’t deserve dogs.
So how exactly is this a habit?
Like any dog mummy, I talk to my girls. My baby bell. My ImJim. I love them so much. Sometimes it feels like they’re the only ones who listens to me.
Dogs or cats?
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?
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 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.
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.
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.
My Inaccessible Life 