Tag: Disabled People

Nobody puts baby in the corner.

On By Katy DalyIn Blog1 Comment

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.



Reliance on technology

On By Katy DalyIn My Disability TruthLeave a comment

I am reliant on a lot of technology to live my life. One of the most important pieces of technology and reliant on is my wheelchair, but this can break like any other piece of technology can. At the minute I am dealing with a few different wheelchair related problems including footplates that are the wrong height, alongside cushions that are no longer functional and batteries that do not work properly.

When I went to have a the cushion looked at recently I was told that not only do I need a new cushion but my foot plates were the wrong height. If I’m honest, I was confused by that because I’ve had a foot plates at this height for many years. But although I use these chairs, I don’t know a lot about sitting in them correctly so I believe the professional who saw me at my appointment and allow them to fix what they saw as the issue. They were hired but now my feet no longer stay on the foot plates.

While waiting for the cushions to be replaced, I found it was causing too much of a problem for me that my feet would not stay on the foot plate anymore, so I contacted them for a solution. But as if that wasn’t enough of a problem while waiting for solution to these two issues, I developed a problem with my batteries.

Again in trying to be helpful, I did something I’ve done many times before, I picked up some prescriptions for others and took it to them. By the time I got to the house, which isn’t all that far from mine, I had very little battery left in my wheelchair. I had to get someone to walk me home to make sure I got there okay without my chair stopping like it often does when the batteries are really dead. The only way to tell when the batteries is on my wheelchair are going is when they no longer last the distance that they previously did. There’s no indicator on the chair, or any way to really predict the batteries going before they start to go.

This means I had to call the wheelchair services that provide maintenance to my chair and book an appointment for them to replace my batteries as soon as possible. This was something they were able to do quicker than the other repairs I am waiting on, both because batteries are obviously more important but also because they are standard and more easily replaceable than other parts of the chair. But it means I have to put my life on hold to some extent until the batteries are replaced. I have plans tomorrow for example, but I may not be able to follow through on them depending how well my battery wants to work between now and when it will be changed on Monday.

While some people might understand a little bit about what it is like to be reliant on technology in modern society, as tech technology needed a lot. You can’t really understand what it is like to need technology like those with disabilities often do unless you’re in that situation. Technology doesn’t just make things easier, when you’re disabled, it makes things possible.

It can make life difficult, as I promise you it will usually brake at the most inappropriate time for it to brake. But in reality, there’s no good time for something that you need so much to brake. You just have to learn to get by as best you can, and wait for it to be repaired. But I really wish I didn’t have to rely on technology sometimes, especially when it doesn’t work properly.

Hopefully I’ll get my batteries changed on Monday, and the other problems fixed as soon as possible. Then nothing will go wrong with my chair, and I can get on with my life without having to stop it for broken vital technology, for a good while. 

Shower night.

On By Katy DalyIn My Disability TruthLeave a comment

Showers are supposed to be relaxing apparently, though they don’t feel that way to me.

Tonight I had to shower and unfortunately I ended up getting injured. That’s not really what most people think of when they have a shower. But it happens and worst of all I didn’t come out of there completely clean. I’m difficult to clean and the situation in which I have to shower makes it difficult. So to be honest I don’t like to do it often. You can see why when you understand that it’s usually a painful process. And that’s not counting nights like tonight where I ended up getting injured.

At most I’m able to shower three times a week, this is what my care package allows. But if I’m being honest even that’s too much for me. I generally only shower once a week, sometimes once every two weeks. Now don’t worry I don’t smell, unless my incontinence has been having fun, because the carers wash me daily. Whether they wash me properly is another problem. But generally it’s not so bad only showering once a week. It keeps me clean enough I think.

All this is to say that doing what’s social expected can be draining physically and emotionally, even when you have complete help to do it. So whatever you can manage is enough.

Ignore anyone else that tells you otherwise, they’re not living your life with your situation and you’re doing your best.

And yes I’m reminding myself of this as well.

Learning Routes.

On By Katy DalyIn BlogLeave a comment

Due to a lot of the world around me being massively inaccessible, I almost always learn specific routes when I travel in well known areas. This is something now do without thinking because I’m so used to doing it, and I often don’t realise I’ve done it until I route I take has to change for some reason.

I only have to do a regular route a few times before I find ways that are comfortable to me. These are ways that are often so specific, they include travelling on a specific side of the road. I’ve even missed shops that are on the other side of the road to the route I’m taking, because I’m so focused on the way I have learnt to go.

When I have to change a route it can actually be quite scary and sometimes disorienting. One reason for this can be because I don’t know the condition of the pavements I will be on, or where drop curbs are. Sometimes I have to just change curbs that are new to me, because I can’t always tell how big a drop is going to be when I’m on the pavement. And as I can’t always see exactly where my wheels are, sometimes I hit pot holes, that I was unaware of previously.

To put it simply, I have to pay a lot more attention and take more risks when I travel on routes that are unfamiliar to me, so I obviously don’t like to do this.

Now I am able to manage better than some, when changing routes, despite my difficulties. For some being able to follow specific routes that they have learnt is more important than it is for me.

The point of this post is to hopefully remind anyone reading it that sometimes people have learnt routes for specific reasons, and they can’t just change them. Some obstructions like road works are unavoidable, what I mean by that is they require the say of the council not individuals to prevent. But individual pavement obstructions, such as where you park your car, is a different story.

It is worth remembering that people can’t just change routes. They can’t always just cross over to the other side of the road, to pass the obstruction you create.

So have a little consideration for where you park or leave things on the pavement. Just remember you may be blocking a path that is someone’s only way of travelling somewhere independently.

I am aware that this post may be considered slightly ironic given my current situation which makes travel difficult. But as I’ve had to explain this recently to others, after sharing pavement obstructions by hedges and vehicles, I thought it was worth also going over here as well.

The heat is really messing with me.

On By Katy DalyIn My Disability Truth3 Comments

So at the minute where I am it’s very hot. And the biggest pain killer I use is heat, specifically a heated blanket. But due to the heat I am unable to use it as I would, without sweating so much.

This means that I’m in more pain than I’m used to. And when you have chronic pain a change in your pain can be really difficult to deal with.

It’s really throwing me off honestly. On top of the not being able to sit in my wheelchair issue due to the cushion. I really feel like my condition is controlling me lately, rather than the other way around. It’s very frustrating.

I can’t really travel.

On By Katy DalyIn Blog, My Disability Truth6 Comments

What are your future travel plans?

Yes for the reasons you’re thinking of, but also not really for those reasons.

Let’s just say that money can solve most problems and if you really don’t believe that then you’re not paying attention to how privileged financially you are. Money could definitely solve the problem with travel for me. While much of the world is inaccessible, many of those inaccessibilities can be overcome with money.

Money the world does not want me to have because it does not want me to make a living for myself and have to see people like me in the real world. Money the world does not want me to have because I would not confirm to the useless disabled person they believe I should be. Money they’re able to keep from me.

Society wants me to be poor, and so I cannot travel. It is that simple.

That said, I would love to go to Vegas.

I know I said I was going to write much and I think I’m still going to keep this short and sweet but this one was to good not to answer

If you say it, you should mean it.

On By Katy DalyIn Blog6 Comments

So floating around on the disability areas of social media today has been a question to the effect of “What is your worst experience of exclusion?”, so I figured for todays post I will answer that again here.

For me my worst experiences of exclusion are failed promises of inclusion. Now I know sometimes this can be more difficult to accomplish, but more than once it’s been easier and they’ve still failed. The part you have to really understand is whether I should or not, I don’t expect to be included in things. The truth is, exclusion is and probably always will be, my norm. I don’t expect an invite to the party. So why dangle the invite in front of me, if you have no intention of putting the work in?

Seriously, why are you doing that to me? To anyone?

If you genionely want to put in the work to include someone with a disability in something, then put in the work. I really don’t think this is to much to ask. And if it genuinely falls through, after you tried, then tell us. Don’t just ignore us, and think we forgot.

From experience, when you’re not used to the invite and you finally get it, it’s not something you’re going to forget. In fact you are probably going to hold on to it more than others, you will not forget. I certainly did not. I really looked forward to going to this party, and they said they’d find a way for me to be included, and then they just didn’t. I don’t even know if the party happened, I presuming that it did, because why wouldn’t it? But the basically just cut me off and stopped mentioning it. I honestly don’t know why.

Just tell disabled people the truth. We deserve that at least.

So go on then, if you find yourself reading this and you feel like answering – What is your worst experience of exclusion?”

Why will I not work for free?

On By Katy DalyIn BlogLeave a comment

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.

Going out

On By Katy DalyIn BlogLeave a comment

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?

On By Katy DalyIn Blog2 Comments

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.