One of the most confusing things about being disabled is the lack of expectations. This world is full of expectations, things we’re supposed to have done by a certain point in our lives that will honestly make no sense to me ever.
But as someone who is visibly disabled, no one expects anything of me, and that would be nice if it wasn’t so humilating. And honestly the fact that I find it humiliating is even more confusing.
I know these stereotypes and pressures are wrong, but it’s a slap in the face when you think I don’t qualify for that wrongness. Which is weird in itself because logically I know wanting to be mistreated in this way doesn’t make sense.
That means everything I do has to come from me and my desire to do it, and I get zero recognition for the extra effort involved in that. As all the recognition I do get is tired up in whatever inspiration porn others decide to create from my existence.
Image Description: Myself tilted back in my electric wheelchair under a brown electric blanket facing the camera. My dog, Bella a small brown-haired caviler King Charles dog is sitting on my knee, looking at the camera with her tounge sticking out. In my left hand I am holding my catheter, which is emptying into a bottle you can also see on my knee. My left hand is holding my phone.
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.
Image Description: Myself laying in bed hugging my dog Bella, she is curled on my shoulder. My pad is visible slightly below my arm in-between the blanket over me and the pillow behind me.
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.
So today I experienced one of the most annoying elements of accessibility and one of the best I’ve seen at least where I live, in a very short space of time.
The bus I tried to get this morning already had a wheelchair user on it, which meant I couldn’t get on it. This needs to change. We need to create buses with space for multiple wheelchair users at the same time. This is particularly true when society tends to push disabled people together, by segregating and excluding us from the rest of the word. I’m thinking of Special Educational Needs (SEND) Schools specifically here. It doesn’t make sense to force disabled children into the same social spaces then deny them the social space to go out together as they become teenagers and adults.
Then a newer bus, while still only with one space, did not involve the awkward turn other buses have apparently deemed necessary for wheelchair users to have to make. So it’s an improvement, in a way. Not as big of an improvement as having multiple spaces on a bus for those in wheelchairs, but it’s something.
Can you imagine if buses only let one person on at a time? How ineffective they would be at their job? But we’ve deemed that an okay place for disabled people to be in. That is something that will never make sense to me.
How would you describe yourself to someone who can’t see you?
And what could it relieve about me.
My instant reaction is a disabled wheelchair user, but I can’t help but wonder if I only default to that description of myself because it feels like that’s the way the rest of society sees me.
Isn’t it funny how physical descriptions of ourselves are the ones we default to?
That’s not to say it’s wrong, in fact I know it would be a factually accurate description that I’m not ashamed of using. But that’s not all there is to that, and maybe including everything else in such a description of myself is a good thing.
But I find myself so reliant, perhaps controlled, by the physical description of myself. That I’m not entirely sure of how I would describe myself without it.
The carers were late for my call this morning even though I told them I had an appointment this morning. Luckily as I was able to rush, I was not late for the appointment.
But I’ve now put in my first complaint with this company. I understand they’re busy, and 7am is a hard call, but they shouldn’t have agreed to take on my call if they couldn’t do the time.
The time is important, for me and for my independence. And they’re making living my life feel impossible by simply b
I swear there’s no other job that you can lie so much and it somehow be expected. It makes no sense.
I really dont understand why my carers can’t just tell me the truth.
All they would have to do is be honest with me about doing the job they agreed to. And yet they don’t, they’re late and they about it. And I feel like I’m the horrible person for being so upset about it, for simply expecting them to allow me to live my life.
I’m trying to think that they’ll be one day that my carers won’t limit what I’m trying to do. But sometimes it feels like living any sort of independent, accessible life is impossible.
I’m just tired.
Tired of trying.
Tired of my trying not working.
Tired of it being so hard to try.
I don’t feel as disabled as my carers often remind me that I am. I don’t think they’re used to that. Someone that wants and believes they can live the life they want, or at least as much of it as possible, that is as physically disabled as me.
I don’t know when my carers are not going to be a problem. I need them. But I also want so badly to be free of them.
For now though all I really want is for tell me the truth.
The carers were late, and this had now become my norm.
This honestly ruins my day. I’m the type of person that has to be up and out of the day to make anything out of the day. And the carers being late are ruining that.
They’re blaming other clients. Yet they can come on time when they know I have an appointment. So they can come on time, they just apparently don’t want to.
I really don’t understand why it’s so hard for people to do the job they agree to do. But I do know exactly why it surprises them that I need to be somewhere everyday, that I have a life. The answer to that is ableism.
I’m just trying to live my life and they are making it so difficult and so inaccessible.
Having to deal with my life and make something of it, is hard enough without there lies and inability to do there job on top.
I may need to change companies again. Annoy my social worker, by trying to live my life. But I honestly font want to do any of that. Having to do all of that is making me feel even more disabled. I hate it.
My carers were two hours late this morning. This is an improvement on the previous day when they were three hours late. However, when they arrived they said that they let me lie in.
I’m just going to say this again. It’s not a lie in if I don’t ask for it. You’re not doing me a favour for being late.
Luckily today I do not have plans but next Saturday I do. It’s not up to you to decide what I want or what’s best for me.
I don’t understand why it’s so hard for people to do their jobs. And when they don’t they make the life I’ve built around me inaccessible. Most people aren’t going to care that I couldn’t be there because the cares decided to let me lie in. You’re not doing me a favour.
My Inaccessible Life 