Tolerance

If you could permanently ban a word from general usage, which one would it be? Why?

It’s often a word that is used in place of acceptance, as if it means the same thing when in reality I would argue that it means the opposite.

To tolerate something or someone is to put up with their existence, this comes with a general idea that you do not like or support their existence, but you’ll just deal with it because you have to.

To accept something or someone is to understand and support its right to exist. You want that person in the world.

See how the words are different, very different I believe. They definitely shouldn’t be used to interchangeably.

The rules of needing help:

The rules of needing help are as follows:

  1. Always be grateful. 
  2. It’s on there terms not yours. 
  3. Say please and thank you for every little thing. 
  4. Remember as much as you possibly can about the things you need help with all at once. 
  5. Always be grateful. 

No one talks about the rules of needing help, they only seem to exist when you need a lot of it. That help is almost always given on the condition of those giving it, they’re doing something for you after all. If you’re lucky they’ll ask you specifically about the type of help you want, exactly where or how you want something doing. You basically have to be a god to have a say in when you get it done. You don’t get something done how you want and when you want it for free, being unable to do it yourself doesn’t matter. 

Did you know that bigger tasks are comprised of a lot of smaller tasks? Sure you want that moving, but you also need to know what you going to do with the other thing you need to move out of the way to put it where you want. They’ll have to move that as well, and deal with the rubbish. Get ready to be thankful for each individual step. 

Even if it’s there job, to do the same things they’ve been coming to do daily, watch they don’t randomly want a thank you out of nowhere to make themselves feel good. Give it anyway, just in case. I know this sounds a little extra, but think about needing help for a lot of things and having to thank someone every time, I promise you it gets old fast. It’s not that I’m not grateful, it’s that everything becomes something someone else is doing for me I remind them of it, my existence becomes about others helping me. 

On that note, remembering that others are helping me, means I go out of my way to try and remember all the things I need help with at once. This makes it easier for them to help me, and makes sure I get all the help I need. But if I’m honest with myself it’s more about the first part than the second part. No asking someone for something when they’ve just sat down, even if that’s when you remember. Side note though, don’t ask them for to much, then you’re just being to needy, it’s up to you to find the right balance there. 

And lastly, again, always be grateful. No one wants to help people that are ungrateful, and when you need a lot of help you have to be nice enough so people want to do it. You’re the one that suffers if they don’t, if they just decide to say no. Don’t risk it. 

My last concert

Almost a week I attended what will be my last concert, and it has taken me a week to fund the strength to write about it, due to just how automatic the experience was.

Music is a freeing experience for me, it is one of few places in this world where i do not feel constricted by my disability, where I do not feel disabled. But concerts often have the reverse effect, and they really did this time.

I went to a Dean Lewis concert, and I suppose as final concerts go it was a good way to finish a bad run. I made the mistake of going back to a venue I already knew was inaccessible to me, by this I mean that although the venue was technically wheelchair accessible, I knew the view it would provide me with wasn’t. Contrary to popular belief just because the venue in wheelchair accessible, doesn’t actually mean it will provide an accessible view to wheelchair users.

I was told previously that I would be able to go on the main floor when visiting that venue again, after my first very poor experience of it. However, when I went this time, I was told this was not possible due to there being no risk assessment of a wheelchair user being on the main floor. I found this confusing as I can’t really understand why I would have been previously given permission to do something that I was never going to be able to do due to lack of risk assessment.

I also don’t really understand why I’m more of a risk in a crowd full of people than the drunk people in that crowd are. Of the many concerts I’ve been to at this point, I’ve never once been the person that needed help of any kind. It isn’t about my safety. It is about the venues, fear of being sued. I argue that I in fact more safe to be in that crowd than many other people, once I’m in it, I do not move. And surely the people within the crowd have some responsibility for their own safety, is it not their job to ensure that they are not injured by someone in a still and unmoving wheelchair?

We really need to move past the idea of the accessibility for disabled people is just getting them into the building, that’s it’s just taking a box to say we tried. In some ways this is where the legal requirement for accessibility hold us back. People don’t actually consider the accessibility of a venue as long as it meets these legal requirements and the legal requirements are outdated and basic.

I cannot put myself through this again, I’m scared if I keep trying it’ll ruin music for me. Music saved my life. I’ll take a lot of it that’s freeing, over a little more of it that’s debilitating.

Disabled people deserve fun. And I’m tired of that being an argument. I’m tired of nice excuses, and lovely people not be able to do anything about it, and feeling bad. But nothing changes because no one sees that it should.

I just want to dance.

The venue was – The Victoria Warehouse,

First night.

Tonight is my first night in my home alone.

My sister, who I’ve written about here before but tried to be vague with, has moved out. She was my carer but is now pregnant and therefore can no longer do that. In order for the flat to be accessible to me it is also cannot be made safe for a baby, so she had to leave.

It’s been complicated, but I would be lying if I said I wasn’t relived that I am alone now. Which is weird because I didn’t expect this level of relief, if I’m honest. I thought I would be more anxious. But instead I feel good. And the house isn’t even completely mine yet. I’m looking forward to how I’ll feel when it is.

My dog.

I haven’t decided yet whether I’ll post this one do you know or it’ll stay in my drafts. I guess if you’re reading this I’ve made my decision.

I love my dogs. I love dogs in general. But as I’m sure every dog parent will tell you, and they would be right, my dogs are special. But the thing is I can’t do everything that my doggy needs me to do for them because of my disability, and sometimes I feel guilty. Guilty that I can’t be the parent they deserve.

But the thing about dogs is they love you anyway, you do the best for them and that’s always enough for them.

Thank you girls. For making me a mum. For making me enough. I love you.

Chocolate

What snack would you eat right now?

At least that’s what I said even though it wasn’t really what I wanted. What I actually wanted wasn’t even food, but a lot of the time I don’t feel like the things I want are important enough for me to ask for. \

What I really wanted was for my little girls polar bear teddy to be moved so that it sits over her urn correctly. I don’t think really that’s too much for me to ask for, but I know that the person helping me will think that it is. So I felt I had to make up something more acceptable that I needed there help with, like the fact I wanted some chocolate.

That is one thing I’ve learnt after having a lifetime of help from others, people will judge you for the things you need help with. They might still do the things you ask them to do but they will be very strange about it, and if you ask for to many things that fall into the category, they will simply choose not to help you anymore.

When you need a lot of help from others, you have to have your life run by them. It all ultimately comes down to what they will actually do for you, if they say no, then you are stuck.

I don’t think people really understand what that is like until it happens to them. It is really hard to grasp what it is really like to have everything in your life controlled, and as a result at least in some way judged by other people.

It’s difficult to believe I have a right to have a say in anything in my life, when I know anything ultimately comes down to others. That is why I struggle when people ask me what I want in any situations, because it just feels like that ultimately doesn’t matter.

Anyway, as for now I have the chocolate, so I’m going to eat some now at least.

When you don’t like being around people but you have to be.

One part of being disabled that people don’t talk about is the fact you have to be around people that you really don’t want to be around.

There’s no, I don’t want people like that in my life, when you need that person in your life. Cutting them off puts me in danger.

I’m not really a people person, but I’m forced to be a person that is always around people. I’m always waiting on people, waiting on them to do everything for me. To get me up in the morning, someone to make me food, to get me a drink.

And I’m supposed to be grateful. Always. It can never be to much that they’re helping me, while something I need at the same time. That just doesn’t make sense to people, when I’m getting the help I should be grateful, always.

The minute I’m questioning how they do it, asking for something some a specific way, or just having a bad and seem off when being helped. I’m not being grateful.

Did she shut the door to keep me quiet?

I hate being disabled sometimes. I categorically hate it. It’s a visceral anger that I don’t know what to do with.

I realise recently that it mostly correlates with when I am placed in situations where I feel like a burden for reliant on others. Like I can’t change anything else, but I can be mad at myself for being in that situation. And at least that’s something, even if I know it’s not healthy. And unfortunately the person who I am heavily reliant on has an annoying habit of making me feel this way.

This leads to me feeling so broken for ever needing help, like I’m the worst person in this persons world, there biggest inconvenience. And they’re treating me like I forced them into a situation that they agreed to live in.

It’s not my disability that makes me feel like a burden. It’s always others.