If I tell you that Cyril is the name I use to describe my cerebral palsy, this tagline should make sense.
Naming my cerebral palsy helped me to separate it from myself, and find who I am outside of my disability. But I still often feel trapped by my disability, though I’m trying to make the best of my life.
It’s hard living your life knowing that you will never get to live the life you feel like you should have had, and knowing there’s nothing I can do to get that life.
If I’m being completely honest with myself, I feel like my disability robbed me of a better life. And logically that’s just sad.
Sometimes all you can do in life is the best you can do, and that has to be enough, I guess.
What are the most important things needed to live a good life?
I understand that this can be a complex question, because it depends what you think a good life is, but I guess that’s the point.
Personally I would have to say one of the most important things needed to live a good life, whatever you believe that to be is Freedom. Freedom can look different to everyone. It can be the safety to live independently from others, or the ability to choose what you wear, how you look and where you go when you want.
Essentially I think Freedom is defined as living whatever life you want to live, within the bounds of not causing harm to others obviously.
Everything else I can think of that someone might need to live a good life, all stems from this idea of having the freedom to live the way they want to live.
A good life is a life that makes you happy, a life that doesn’t intentionally hurt others, life doing the things you enjoy.
I know this is a vague answer to the question but I don’t really want to be more specific, as I know that a good life can only really be defined by the person who is living it. The one thing I am clear about is that you do not live a good life if your life involves intentionally hurting others. This is never a good life, just keep to your own good life, and let others live theres.
By my own definitions here I don’t life a good life, I can’t do what I want when I want it because I need help to do it, make of that what you will.
When you need help for a lot of things in life, Freedom is conditional, so in my opinion it’s not really freedom.
I don’t live a bad life, by any stretch. I live the best life I can with the situation that my life has been presented to me. But I struggle sometimes to see it as a good life, by what I truly believe a good life to be.
To be honest I wanted to say my fur babies, and be more positive with answering this question, but then I thought about it.
I thought about the fact that I can’t really be left alone for long. That when I am more than not something happens that I need someone’s help for. And how that means that I often spend a lot of time with the person who carers for me more than anything.
Often I relish the small amount of time I am able to spend on my own, with my own thoughts. As it doesn’t happen often, where I feel completely comfortable, I truly enjoy it.
Sometimes I just really wish that I didn’t need to be with someone all the time. That I could manage the little things in life myself.
That’s not strictly true, as I did have a few jobs in university, in situations where they are specifically looking at employing students of the university. There are only things that lasted a day though. I did earn my first and to this day only paycheck which was nice.
But I’ve never really had a job despite trying. Many jobs are inaccessible to me, and people don’t really expect me to work. I tried for awhile to fight against this determine that I would fine something to do. But when your options are already limited, and people are just turning you away because you have no experience as no one will let you try. There’s only so many times you can be told no before you end up listening.
Just remembered that not everybody who doesn’t work doesn’t work because they’ve chosen not to. Whether a person is disabled or not they might want to work they may have tried to work but it is not always that simple.
I can’t just walk into a shop and get a 9-5 to pay the bills. I’ve actually dreamed through having a job like this. A job where I am able to earn my own money and have a role in society is all I really want. But I don’t think it’s in the cars and that makes me sad. 
It’s a necklace that belonged to my grandma. I’m not religious at all, I wear it for the family history rather than anything else.
When I was younger, my mum used to give it me on difficult days or days she said I needed luck. I started asking for it on days when I was nervous as I got older, as it made me feel like my mum was there with me.
When she was dying she said I could have the necklace, and I put it on then and haven’t taken it off, apart from when I had to get the chain repaired, since.
What is your favorite holiday? Why is it your favorite?
I used to love holidays.
But as I’ve grown up I’ve realised just how small my world seems to be compared to those around me. How many options they have to spend with other people that aren’t me, and how few options I have.
Holidays are difficult for me, not wanting to get in the way. Feeling like I’m around because people think that they have to have me around, rather than them wanting me around.
Part of me would just rather to be alone on me own for most holidays. But I can’t do that without the person I live with needing to be with me. So I’m kind of stuck going so they can go.
This is before we even get the fact that of the limited family members whose homes are accessible to me, none of them are easy for me to get in.
So I guess this one is a reminder that not everyone likes holidays. Holidays are not easy for everyone. So be kind.
I suppose to answer his question it depends on what you mean by camping.
If we’re talking in a tent, I have vague memories of possibly doing so as a child. Definitely in my garden and definitely on the trampoline. But there is also a possibility that we went to a campsite to do it.
If we’re talking in a caravan we definitely did this growing up, I can vividly remember it. We also had an awning that the children would sleep in as we didn’t have the room in the caravan.
So yes. I did go camping as a child. It’s not something I do now as it’s not the most accessible activity when you’re a full time electric wheelchair user.
My Inaccessible Life 