I’m actually sat here writing this post to avoid replying to the email just that little bit more. That’s how much I really don’t want to do it.
It’s a response to a previous email about something called Disability Related Expenses, which is essentially extra payments I have to make because of my disability. It’s part of what I and other disabled people have referred to as the disability tax, but it’s a lot more official. And I really have to prove everything I say, in order to get my payments towards my care lowered.
While I abstractly understand why I have to prove these costs, because I simply can’t just claim I pay for something that I don’t. In practice it’s something I hate doing.
Proving my disability just makes me feel very disabled. It makes me feel judged. Like they think I’m lying in some way that I know I’m absolutely not lying. Like they’re waiting for who I am to trip me up. To judge whether I’m disabled enough to not have to pay for care that I obviously need.
And really that’s the hard part, the fact this is all about a payment for something I need but don’t want. And as someone who doesn’t earn, it’s not something I think I should have to pay for in any way. But yet I do.
I need to write this email. I need to get it done. I just really really do not want to.
Society really is the worst part about me being disabled.
There’s lots of different types of grief, and we all have to deal with it at some point in our life.
As well as the obvious and social accepted form of grief, I’m dealing with other kinds right now. I’m trying to deal with it all, as well as all the other parts of adulting.
The more I adult, the less I want to. I’m really relating to this quote right now.
Image Description: A two frame scene from Greys Anatomy, the quote in the frame says “We’re adults. When did that happen? And how did we make it stop?”
Sometimes all you can do is your best, and that just has to be enough. I just wish it felt like it.
As I write this I am at my friend’s. It is about 9pm, and my dad just called me to tell me they think I should go home. He says that it’s other people he’s worried about and not me and my ability, but it honestly doesn’t feel that way.
When I was out the other night with my sister he didn’t have this problem, and I was out a lot later. But then I wasn’t alone, so someone he views as more responsible was there.
I know he worries. But I honestly don’t think this is fair anymore.
I’m an adult. I am not less of an adult because I’m disabled. His worry for me is actually ableism.
So when the person I live with is out, I cancel my care call because the dogs are difficult for me to deal with on there own.
They were out tonight, so I got in bed a lot later than usual, and spent most of the night in my room with my fur babies.
Unfortunately, they knocked off the bed, which I use as a sort of table when I’m not in it, a lot of my things. And as I was home alone I was unable to pick them up, so they were stuck on the floor. This and a combination of me getting caught in some of my charger wires, meant that I was stuck in the same place in my room until they got home.
Now I can’t hold this against the person I live with, they obviously deserve a break. But it highlights to me just how much I need the person I live d with, and how inaccessibile living on my own would be.
Now the easiest answer if I wanted to live on my owm, would be to not live with dogs. But I would rather give up this small form of independence, for my doggies.
Some things are worth giving up independence for. They definitely are.
And it is best for me, and my babies, and also the person I live with funnily enough, that we live together.
Below I have included a picture of my girls that was taken tonight.
Image Description: Bella, a brown Caviler King Charles, lay asleep on a bed next to Immy, a golden labrador who is also asleep. There is a flag on the wall which can partially be seen behind them, and a pink cost next to Immy on the right of the photo.
As I write this I’m sat with my brother in my room waiting for my dad to come and pick him up. This morning he asked me if it was okay if he let himself in to my house when he got here. And of course I said yes because that just makes things easier for me.
But instead of being struck by a sense of independence that he would actually ask my permission to come in the house. I was hit with a sense of playing house. This idea that I will never be an actual adult and I’m always going to be pretending at being a grown up.
Why I do recognise that this is something everyone has to deal with, this imposter syndrome of adulthood. I think it’s harder to believe you’re an adult when you need help a lot of the time.
Not only being an adult but believing you’re an adult is a learning curve, and I’m trying. Today’s just not a great day for believing.
Sometimes I can’t help but think how might life might be better if almost everything I try to do didn’t make me anxious. The part that snnoys me most is that I’m not always anxious about doing things. It’s like I get bouts of confidence in doing something, where I know if I act now, I’ll be able to get it done. But these bouts of confidence never bappen when i can actually do the thing that needs to be done. It’s like my brain, emotions and being adult can never be on the same page.
Right now I need to make a phone call to get proof of my disability to renew my bus pass. But I cannot make the phone call until tomorrow. And even though I know that I’ll be fine making the phone call I know waiting until tomorrow is just going to cause me more anxiety. I just want to get it done.
When was the first time you really felt like a grown up (if ever)?
I really wish I had a better for this question, but I just don’t.
I want to say it maybe it’s the first time I made a phone call, and I didn’t even ask my dad if he would do it for me. Phone calls are always something I have struggled with, thank you very much anxiety for that one.
Maybe it was the first night I spent in my own flat, though that just seems like a cliche, and honestly as I write this I can’t even remember it.
Maybe it’s the first time I got lost, and didn’t need to call my parents to get home again. In fact I have to say that didn’t cross my mind.
It’s weird being a disabled adult, having grown up as I disabled person. At least in my experience, you are told one day you’ll be an adult and be able to do what you want whenever you want, while constantly being reminded that you’ll always need help from others.
It’s bizarre to know that there are some people in the world that will never see me as an adult, just because of my disability. To be in situations where people still look to my sister or whoever else I am with, before me.
To know that no one expects me to be a proper adult. That the idea of being seen as one is inaccessible to me. And while you might see the term, a proper adult’ and think it is nothing more than a social construct. You are right, but so is an adult and adulthood, and I promise you the idea of proper adult is just as real as the idea of any adult. Take it from someone who has to fight to be seen as either, who the world still wants to see as a child. Adulthood feels inaccessible.
It’s extremely difficult to know that the only way I’m going go be seen as adult is by believing I can be one and therefore acting like one. While at the same time definitely not feeling like an adult. No one but me is pushing me to be a proper adult, and that makes it hard to be anything close to an adult sometimes. Honestly no one would care if I stopped trying to be seen like an adult. So I have to care.
That said, I don’t know if I’ll ever truly believe I’m an adult. For that matter, does anyone? Do you, whoever you may be reading this, believe you’re an adult? Do you think that you’re own belief in whether or not you’re an adult, effects whether you are treated like an adult? Proving that you yourself are not from a infantilised minority, like those who are disabled, I can’t see how it would, but I would be interested to know.
I don’t know if I’ll ever truly believe I’m an adult. But I know that I owe it myself now and to my younger self to try to believe it. To act like an adult, so I’m treated like an adult. To act like a fully formed person, so others see my value as one.
Was it Shakespeare that said “all the world’s a stage”? That is a genuine question, don’t be mad at me but I really can’t be bothered to look that up right now. But I think what that means is that everything’s an act, that everyone is acting. That everyone is pretending to know what they’re doing in life. When really none of us know anything at all.
So maybe we’re all just secretly children pretending to be adults. I know I feel that way most of the time. But my life has taught me that it’s more important for some of us to be better actors, to perform on stage better, than others. Though maybe if we’re all aware that we’re acting, there might just be a little less stage fright.
I’m disabled. But I live in a world where depending who someone is they will hold me to the standard of a non disabled person or a disabled person, sometimes interchangeably.
When people can’t decide whether you should or shouldn’t be treated as a ‘normal’ person, what they expect from you can often contradict.
On one hand they can expect you to get a job. On the other hand making a phone call can be a step to far for there ideas of your abilities.
All of this while remembering that the world is inaccessibility to me in many ways. So just because I want to do something doesn’t mean I can, and that is not my fault.
It can be hard to figure out what you want to achieve, what you should push yourself to try to achieve, and in all honestly just who you are.
We need to stop seeing disabled people as different, as less than non disabled people. The world is hard enough to navigate, without me having to try to decide if I want to try to prove I’m normal or not.
So as today is day of travel for me, I’m getting a lot of public transport to do today’s errands. As I write this I have just been denied access to what would have been my third bus or the day because there was already someone in a wheelchair on it.
After I wrote this, I lost my bank card and ripped a sling. It turned into one of those days I guess, where everything went wrong. So I apologies for how poor this post is.
My Inaccessible Life 