This is where I’m spending my night tonight. It’s not good for me but it’s worth being able to spend time with my siblings. But that’s the way it has to be sometimes, when you live in an inaccessible world. You have to be the one to sacrifice to spend time with the people you care about.
Tag: Family
Nobody puts baby in the corner.
But sometimes it’s best to put me in the corner.
And that’s just the reality of living in a society where 99% of the homes are inaccessible to you. But you still have family, you still have people you wanna spend time with especially unimportant dates, like today was for me. So you allow yourself to be put into the corner to be out of everyone else’s way.
To be fair to them, it was the best place to put me to give me the best view of the room. But it did feel very very much like I’d be in the way if I was anywhere anywhere else. So is it really a choice then, if I feel like like I have no other options?
At least I got to be involved. At least I can get in the house at all. At least I was some consideration when they were looking for a home. Even though I do have to go up and down a very dodgy and frankly scary ramp to get in and out. At least I have some access which is better than none.
I worry that I’m never going to feel as if I belong anywhere. Even in my own home but especially in society as a whole. And being in someone else’s house is just a reminder of that.
I know it’s wrong for me to make their home all about me. But I also feel like I have to think about about me because someone has to think about me and the rest of society has failed to do that. But can I judge the people I care about about, the individuals themselves for the home they choose, when the majority of homes are inaccessible to me to begin with.
The answer is it would not be fair to. And yet I wish I could, I wish it would be fair of me to blame someone sometimes for how inaccessible the world is to me. Not just be mad at the somehow non-existent yet also everywhere “society” that is to blame. People caused the ableism I am forced to live with, and yet in most situations I can not be mad at people for it. I know why but at the same times, it makes absolutely no sense.
But at least I can get in the home of the people who I care about. Despite my the fears and difficulties and only being able to get in one room. At least I was a thought, right? And something is better than nothing.

The struggle of life.
Sometimes it can be really hard to deal with the bad things that happen in life when you are disabled. This is because you are still disabled when the bad things happen.
Over the past few days I have had a family member in hospital, and now that they are home and on the mend I want to write about how that was for me at a disabled person. I’m aware this is selfish but as I’ve said before my blog is my place to be selfish.
It was difficult for me knowing that I wasn’t able to be there for them independently, knowing that I needed help to help them. And trying to be more of a help than a hindrance to there recovering.
Having those around me in hospital is a difficult reminder for me of the perminace of my disability. That regardless of the situation I can’t do a lot of physical things to help. It was difficult to not be able to help as much as I wanted but I did my best and I have to remind myself of that.
I just wish I could do more, because what I can do, never feels like enough.
Why will I not work for free?
To be clear I don’t believe that anyone should ever have to work for free, volunteering or otherwise. If you choose to do so that’s completely okay, but only if this is a free choice, and for most people I believe that this isn’t the case. Most people seem to find themselves unable to get a job where they can be paid for there work, and so end up working for free, these situations are not a choice as far as I’m concerned. They may have no other options, and so this cannot be considered a free choice, if it’s the only choice you have.
Working for free is never something I will choose to do, but I recognise that I am in a privelleged position to be able to refuse to do that. I am able to get by in life from the benefits that I am entitled to, but so long as I am in that position I will not work for free. Beyond my inital statement, that no one should work for free, which of course also applies to me. I have more personal reasons why I will not work for free.
The biggest reasoning besides believing that I should be paid for my worth like anyone else, for me is energy. It will cost me a lot of energy to hold down even a part time job, that my friends is the joys of being disabled and having fatigue, I cannot affrod to waste the limited physical energy that I have, on something which does not benefit me, and I know that may come off as selfish but I honeslty think it’s fair. On top of this I must also consider the way that me working, will impact the benefits I am on, and the bills that I currently have to pay. Without boring anyone reading this, let’s just say it’s an incredible complex system, that means that only working either bellow or above a certain amount will be of actual benefit to me. As such I can’t just take any role for any amount of money that is offered to me, this further limits the already limited work I am able to do. I have to be smart, physically and finacially.
In a world that doesn’t want me to work, and would be quite happy if I did nothing at all with my life, it’s hard to fight against it at all. I don’t alwayes know if I want to fight against it all, maybe it’s just better not to try, but that’s what they want to me to think, right? And it feels like all I have left is to push against people wanting that.
It’s an uphill battle for everyone to work in the modern world. And lets just say, hills have never been designed for those of us in wheelchairs.
Now, you may be wondering what prompted this post, well let’s just say family pressure. Family pressure without truly understanding what I’m up against. Family pressure without understanding the complex of the situation. Family pressure that has been hypoctical to say the least, from those who had opotunities I never had, and threw them away. It’s fustrating to have people that don’t know your life, believe they do, and try to tell you how to live it. I’m trying and I just wish that was enough.
Stopping by
If someone stops by briefly it’s not often me they see. They come and see the person I live with and I don’t expect them to even talk to me.
It takes so long for me to get out of the house and so many people are impatient for me to leave the house, it’s not worth me even trying when they are here quickly.
This means I’m often left out, simply because people don’t want to take the time to include me. If I know in advance I can be more prepared for them to come, but just turning up isn’t helpful if you actually want to see me and aren’t willing to take time.
Going out
So I’ve been invited to a family event and thankfully the place is fairly accessible. I’m quite happy with the gap in the bench at the table, and the ramps, but to be honest that’s about it. I can’t get myself a drink though, which is probably both equally a blessing and a curse.
Its still odd for me to be invited to things, I’m honestly not sure I’ll get used to it. Before coming here I contemplated not coming multiple times, I figured it would just be easier for everyone else and for me. But I’m glad I came, I think.
One day maybe I can go somewhere with people and not feel anxious that I’ll get in the way. Living in an inaccessible society, causes lasting emotional damage. I don’t think I’ll ever get used to being invited anywhere, to being wanted.
Even the friends I see regularly, I’m still surprised they want me around, but somehow they do. That the problems I cause are worth it for them.
Logically I know it’s not my fault that society is so inaccessible, but emotionally? It’s a struggle to remember that I am not the issue. That I deserve to be involved in things even if it’s difficult.
It’s okay to not feel like you belong, it’s not your fault. Just try not to let that stop you from doing something you want to. You deserve to have fun.
Oh the weather outside is… Sunny?
Okay, so I know it’s not Christmas, but I couldn’t resist titling this post that way. It’s not actually a very positive post, well it sort of is, but this makes me feel even better about it.
So today I went to see some family, and I had to stay in the garden. Surprisingly, for where I live the weather was okay, but that doesn’t mean I was very happy about the whole experience. Obviously would’ve been worse. Had the weather been bad, but either way it’s uncomfortable for me to go to places where all I can do is wait outside.
The reality of most housing not being accessible to you, is more than the fact that you are often limited in the housing you can live in. For me I will likely never leave my current home, it was very difficult for me to find somewhere that’s even partially accessible. But also that you often cannot visit anyone in there, homes because you cannot get into them.
There is almost no one out of all my friends and family that I am able to go and see due to the accessibility of the house that they live in. And if I’m being honest with myself, this is something that I find really upsetting.
Logically I know it’s too much to say that I wish they would only live in accessible housing, but also, I wish they would live in accessible housing. I wish that it wasn’t too much to ask to want to be part of my family.
It gets really frustrating when you are the one that has to make the compromises in order to spend time with family, and I am yet to find a way round it. Having them come to my home is also difficult because it means I have to get my home ready for visitors. This is something that I’m not able to do, and don’t worry about the way that anyone visited my home judge me for that. For this reason, I don’t have a lot of people visiting my home and that is honestly the way I like it.
Another part of the reason that I don’t like having people over in my home is because I have a lot of strangers in my home regularly, in the form of carers. It makes me not like the experience of having other people in my home if I’m honest, whether I know them or not.
For this reason, it was strongly suggested that we meet somewhere else in order to spend time together. Mainly because given where I live there is every chance that it might rain, and I didn’t want to have to get wet, as I can’t easily change. Though in this instance that didn’t happen thankfully, it was still a risk, and not one I was very comfortable in taking but needs must.
From experience if I don’t take risks such as going to people’s inaccessible homes in order to spend time with them. Or going to events at just about accessible venues, which are still inaccessible as far as I’m concerned, then I’m often blamed. In the past it feels as if others believe I have chosen not to participate in the get together. Rather than it being the venue and the lack of planning on the organises part, that are the reason I’m unable to attend.
As a result of this happening repeatedly, I haven’t internalised this as being something wrong with me. As if it is my fault, I am not able to spend time with friends and family and therefore I must compromise when I can in order to do so.
Today, as I have said, it went well but it doesn’t always. And I have to admit I’m left wondering when others will compromise to spend time with me? Honestly I know the answer is never, as non-disabled don’t find themselves in a position where there need to compromise in the way that disabled people do.
But it would be even better if more homes could be accessible and I would I simply be able to go and see those that I care about in their homes.
More homes need to be accessible to disable people. So that we get to be part of society and our families properly.
Please forgive me if this one doesn’t make a lot of sense I can’t really figure out why but I don’t feel like it does. I hope you get the gist of it anyway.
I can do some things on my own.
So after being out all day yesterday, the person I live with seemed surprise that I told them I would be okay to handle what we’d being doing today on my own if they wanted to stay home and sleep.
To make it clear I won’t really be on my own for a lot of the day, but because they won’t be with me for all of it, for part of the day I would be on my own. Specifically while we get to the place where we’d be meeting family.
This is a well practiced route that I do almost every Monday, when we go for a family breakfast, so I’d be fine. In some ways it’s actually easier for me to be out of the house on my own than in the house on my own. My house is just that inaccessible in parts to me. But still they seemed surprised that I’d be okay to handle this on my own.
I think it’s easy to forget when you see how much help I need on a regular basis that I don’t need help for everything. That although some things are easier for me to get help with, it doesn’t mean I couldn’t manage them alone.
Interestingly as I write this I had to call for help, but remember what I said about my house not being that accessible to me? Blame the environment for that one.
Anyway, the way they said this was like they expected me not to go if they weren’t going, and honestly that annoyed me maybe more than it should. Like I said this is something we do every week, and a few times I’ve been too tired to go, but I’ve never expected them not to go because I wouldn’t be. It’s like they forget I am an adult that can do things without them. Maybe they do? Maybe everyone does? Maybe I do? I don’t know.
There’s something else I want to add about this weekly get-together. It started years ago, and initially, it wasn’t something I was invited to, which really upset me, and on some level, I think it still does. When I questioned why I wasn’t invited, I was told they just didn’t think I wanted to go. And I don’t know if they genuinely believe that, or if it’s just what they tell themselves to make themselves not feel guilty, or which answer to that is worse.
I personally think they decided that it would be too difficult for me to get there, and so decided just not to invite me. I never questioned it because for a while I didn’t actually know it was happening. But this wouldn’t be the first time my family have done something like that. Made the decision for me about going somewhere or doing something, and so never asked me about it. They once went to a theme park when they knew I wouldn’t be home.
This isn’t something I can bring up with them, as it will definitely start more drama than it is worth. I doubt they even remember what they did. But I do. I remember the exclusion, feeling like I was too much to be included even by my own family. That’s something that I still struggle with now. I often say I don’t want to do things, if I think having me involved will make things more difficult for others. It’s not only my family that have excluded me in this way throughout my life, but it definitely hurts worse when it comes from them.
But back to today, I will be going to the family breakfast, whether or not I have to get there or back to my dad’s on my own. It will be happening. I deserve to be involved in things, I deserve to be involved in this family. And this is how I want to be involved. Plus, I really like being able to have chips for breakfast.
Just remember that if you’re reading this, know that you deserve the same from your own family whether or not they make you feel that way. You deserve to be part of the gathering, part of the memory, part of it all. And if they exclude you, it is always a choice, there could’ve always been a way to include you. That is a decision they made, it is on them not you
A cross.
What’s the oldest things you’re wearing today?
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.
I don’t really like holidays anymore
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.
My Inaccessible Life 