I don’t know.

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 really struggling today.

Do you ever get the feeling when you’re up in the morning that the day is going to be a long one. As I write this that’s how I feel this morning.

I’m going to struggle today, emotionally.

My carers backed me into a corner this evening. It didn’t feel very nice. Saying the only way they could come later was by me not having a shower this evening and I have a lot to do today so I can’t have them come early.

My life feels like I constant compromise, my life is a constant a compromise. But today for reasons I don’t quite understand. Its really difficult for me to deal with this emotionally. Today’s going to be rough and I’m going to be on edge.

Sometimes the internalised ablesim hits later

So you may recall my post from late last week exploring (all be it briefly) a night out with my family. At the end of the night, one of the people outside of my immediate family that was present helped to get me into bed.

While they were helping me, it did not bother me as I knew that I needed their help at the time. I even let them have a go in my wheelchair and hoist. Any OTs that stumble across my blog, you did not read that last sentence.

In the days which followed, I began to feel guilty about the way they had to help me, even though they were the one to offer to help me.

Sometimes I wonder if the guilt of needing help will ever leave me alone you know. I don’t think needing help is bad of course, but sometimes the reality of just what I need help with is hard.

However I will still take the help which is an improvement from the complete avoidance, which is where I used to be at with needing help from outside my immediate family. In other words, I would just insist that I didn’t need the help, because of who it was coming from. At least now the guilt comes later, and it doesn’t prevent me from getting the help I need.

Remember you deserve the help you need, no matter how you feel about it. Your feelings can lie to you.

It’s okay not to be okay.

Share a lesson you wish you had learned earlier in life.

Image Description: Black text on a blue background in block capital font. The text reads “It’s okay not to be okay #THESADCOLLECTIVE

I know this is something that people say a lot, and while it is definitely true for everyone, I think it hits a little differently when you’re born with a condition or disability.

What I mean by this is that a lot of the time those of us with lifelong conditions, where not being okay is our normal, often forget that its okay to not be okay. This is because this means not be okay with our normal, which is not a way you would be able to live your life daily. But our normal is not normal, and it’d okay to let that get to you sometimes.

At least in my experience, it will eventually get to you anyway. And by ignoring it and not letting it out when you need to, when it hurts it hurts more.

You haven’t got to earn the right not to be okay, I promise you.

Traveling home

Poor planning meant I just had to leave an outing to get back for my carers and honestly I’m pissed off.

My sister should have known better.

And she used my boyfriends phone to ring me for some reason. I don’t know why she didn’t use her own.

And all I can do is go home for my carers.

I’m so angry right now.

This isn’t always an easy question.

What do you enjoy most about writing?

But I feel like it should be. I love writing so much, the freedom it brings me and the worlds I can create are unmatched. But sometimes it’s so difficult.

Why is it so difficult? Why is it so difficult to do the thing I love so much?

How can something that gives me so much life, bring me so much dread?

I’m trying to do the things I love, to write about the things I love and the things that are so important to me. But I feel like I’m battling myself, and the rest of the world, all at the same time.

I just hope one day I make it, one day it gets easier. That said I’m not sure who I’d be without the fight, but I suppose that’s a future me problem.

My sister dented the fridge

This is minor I know. But things like this really bug me. Things I can’t fix, things that are out of my control. They make me feel physically uncomfortable for a while. After a bit I’ll accept that what’s done is done and move on with my life. I do my best to hide just how much things like this bug me, and I think I do a pretty good job for the most part.

But right now I feel physically uncomfortable and on edge because of something that I logically know doesn’t matter. Like I can feel my muscles spasming slightly in frustration and anger at my inability to fix the situation.

So this one’s a reminder not to judge how upset people get over things that seem irrational.

Pride or caution

Image description: screenshot of a tweet by Alice Wong:

Instead of #DisabilityPrideMonth, how about #DisabilityPrecarityMonth where we organize and fight like hell?

Pride is complicated and flattens out a lot of the joy, love, and care that is intertwined with pain, systemic ableism, and trauma

Source: https://twitter.com/SFdirewolf/status/1675588957793550337?t=CjQQtgtlzktDKXAUhOdruQ&s=19

I really like this quote as I think it speaks well to the complex emotions and practicalities of what it means to be disabled in society today.

Pride, while it means well, can be difficult to feel when you live in a world that tells you you’re wrong is so many ways and so many times.

We deserve to recognise these feelings and the hardships of the world we are faced with. To feel our feelings, whatever they may be without any additional guilt.

Choice

I don’t think non-disabled people realise how much choice they get in the world. They get more choice in where they live, work, in almost everything they do than I will ever get.

Now I understand that there are other factors at play here to make choices in life, money and social status, to give two. But being disabled will always make the world inaccessible in one way or another, will always result in less choices being available.

If I had the money to buy a house, the cost of an accessible house or of making a house accessible to me, would be more than it would ever be for a non-disabled person. If I was not disabled, I would certainly have the experience necessary to go alongside the qualifications that I already have in order to get the job I want.

While I face the same barriers as I non-disabled person in the world, I also face the additional barrier of inaccessibility of ableism, that effects everything around me. Sometimes it feels like there is not a single decision I can make in my life that is not impacted by me being disabled. This can be difficult for me to deal with something, it can lead and often does lead me to feeling like I am not in control of my life for short periods of time. Like I don’t have a choice in anything I do.

This can make it difficult for me to watch non-disabled people turn down choices and decisions that they have in the world that I will never get. Choice is often inaccessible to me.

The world is simply more accessible to those who are not disabled.

Logically I know it’s not fair to say that they should take all the opportunities that they have, because many people will never get the opportunity to say no. I know that they deserve to live the life the way they want to, and absolutely should do that, without the position that other people are in hanging over them. This is why I would of course never say anything to anyone in person, it is not up to me to influence the choices they make because of my lack of choice. Especially because they are not responsible for the lack of choice that I have in the world. But emotionally this can be difficult for me to do with.

None of this means that I am not happy for them, the choices they make or where their life is going. It just might mean that I find it hard to express this alongside the other emotions I find myself dealing with. So just keep this in mind if you tell a friend about something new in your life and they don’t react the way you thought they would. Your progression in the world may be difficult for them.

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?