Tag: Internalised Ableism

When someone else is in hospital.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

I begun writing this post with the knowledge that someone close to me will be going to the hospital soon, and while it is unlikely to be serious, I’m going to refrain from posting this until I know that to be sure. And yes I am doing this to save myself from more guilt than I already feel in this situation.

I am torn as I write this post, by that little voice in my head telling me not to make this about me. That I already make to many things in life about me. But I still have emotions that I want to express when it is safe to do so, and this is my blog, my safe space to do that. So despite the conflicting feelings about writing this post I am going to do my best to continue.

All that said know by the time this is posted, the situation they are facing will be clear. They will no longer be in hospital, and this is all I will be saying on their health as it is not my place to discuss someone else’s health.

What I really want to focus on is what it’s like as a disabled person to have someone you care about going into hospital.

In truth, this depends largely on why they are going into hospital and particularly how serious the problem is. I’m sure this is the case for everyone. But where I believe this whole situation is different for me as a disabled person, is asking the question, will I cause more problems being involved.

Sometimes largely due to the inaccessibility of the world around me, choosing to involved in a situation is something I must consider carefully. And his applies to hospital visits.

I could end up causing more of a problem than being helping by going to the hospital. I could end up taking the attention from them if they do not appear to be in need of help on face value. This is due to people assuming I am always the person in a situation that needs help. I can never be the person there to provide help.

If I have to go to an inaccessible or even just unfamiliar location like a different hospital. It can quickly feel like I become an obstacle to them receiving care, as my accessibility is something else that needs to be considered as well as providing the correct care.

If a problem occurs in the middle of the night, I cannot simply get up and go to the hospital. This is because I need carers to physically get me out of bed, and for public transport or accessible taxis to be available in order for me to get to the hospital. This means I am unable to be anyone’s emergency contact. While I know that this makes perfect sense because I am unable to be the help. I want to be in the situation. I’m unable to be there for the people I care about when they need me.

Sometimes it is better for the person I care about for me to simply stay away.

When my mum was in hospital the reason she died in hospital and not at home was so that I could be there. If she went home I couldn’t be due to the layout of her house. This is something I am as grateful as it’s possible to be in this situation for. As I got to be there for my mum. I got to do my best to care for her when she needed me. But it is probably always something I am going to have mixed feelings about. I will always wonder if she could have had a better death at home.

I do not want to be the centre of attention, I do not want to take any attention. But I feel lil my disability forces me to be in almost all situations. And I have to deal with the guilt that comes a long with this. Usually silently, so I don’t unnecessarily take more of the attention from the person who is unwell.

I just want to help. And hospital are usually situations where I am no help at all. So I just try my hardest to be there when asked and not to be in the way. To cause the lease problems and not drown in my helplessness caused by the lack of help I can provide.

The reality of being disabled all your life. My health having been the way it is for my whole life, the novelty has warm off with certain parts of my reality. This can leave me feel in like other people’s health problems are taken more seriously than mine. Other people get the novelty, that they deserve, but I don’t qualify any more.

Me being in hospital for certain issues in my life is just the norm now. I think there are some ways that this makes dealing with the problem for me easier. As I don’t have to worry about how everyone else is going to react. But I am also left with the emotional baggage of not having that support.

Tied to this is also the fact that my disability and health problems feel like such a big part of my identity, whether I want it to or not. This means that sometimes in the pat it has felt like people are stealing my identity by being ill. And yes I know how crazy and self dented that sounds.

While I don’t feel this as strongly any more, as I find my identity outside of my disability and the problems I cause. It sort of feels like the feelings are always going to be there.

Ultimately I know if I am not the one in hospital it is not about me. And my emotions should and will take be a second to whoever is in need in that moment. But being in the way, my helplessness in the situation, and feeling a loss of identity. Will likely always be something I find myself dealing with whenever someone I care about is ill.,

I hate the damage my disability can do.

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My sister just drove my chair into my bed which then hit my wall because my bed is also on wheels. A wall that is very poorly painted as I live in a council house. A wall which is damaged again.

It keeps happening.

The price of living in a wheelchair in a flat not properly designed for someone in a wheelchair is constant damage of the building in various ways. I know this. I’ve been a wheelchair user my whole life. And yet it still frustrates me.

I will get over the damage I know I will, I always do. I know that it’s not really important. But right now I’m angry with myself for being disabled. All I can think is this damage wouldn’t be happening if I wasn’t disabled. The internalised ableism is winning.

But I know in reality that the problem is the inaccessibility of housing for people in wheelchairs like myself. That without a lot of money, housing will always be inaccessible to me and I will always end up damaging it in one way or another.

I just wish it didn’t upset me every time. When I know it’s an inevitability I can do nothing about.

The middle of the night.

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Everything seems to go wrong at the most inappropriate time to go wrong. I promise what’s happened is now there’s dramatic that opening sentence makes it seem.

As I write this, it is nearly 5 am, I’ve already had to call for help once to get the remote control for my bed off the floor. I dropped it again, but was able to pick it up using a charger wire. Sometimes you have to be inventive when a problem needs solving in the middle of the night.

I dropped the remote for the second time, trying to look for a charger that I don’t even need. But the fact I can’t find it and I know that I had it makes me feel physically more comfortable than I already do, hence why I was trying to look for it.

Now I have help, but I have a rule that in the middle of the night I only ask for help when it is something very important. This much of a problem in the middle of the night. In other words, I didn’t think it was fair to wake someone else up for something that can wait till the morning. There’s only two things that constitute not being able to wait till the morning. One is dropping my control, as without the ability to move my bed in the night, I wake up in a lot of pain or I’m unable to fall asleep to begin with. The other is, if I’m falling out of bed, I would hope that one is self-explanatory.

Using my own rule, I felt comfortable given the time getting help. But angry at myself that I needed it so soon again after I did the first time. my experience of being disabled often seems to come with a lot of being angry at myself for things I can’t control.

I think this is why I get so distressed when I can’t find something, like the charger I was looking for, regardless of the time. I don’t even need the charger right now, I’m just frustrated that I don’t know where it is. The most annoying thing is that I know where it’s likely to be because I can’t find it. That is either on the floor where I can’t reach or caught in my bed, where again I can’t reach. It’s illogical for me to think that it is lost completely. And while I know this, my strong need to find it, seems to overwhelm me. I know this is stupid. I know that logically, I don’t need to find it right now, but still, I feel like I do.

But I think I get so distressed, because losing things, no matter how relevant they are represents the lack of control I have in my life. I’m annoyed that I cannot be the one to look for things when they are lost. Therefore losing something is even more distressing to me. These feelings are often amplified in the night, when I don’t feel able to ask for help, or when I am alone and I can’t ask for help.

I wish it didn’t bother me so much when I can’t find something, but knowing I don’t really need the item doesn’t change the factory I’m distressed by not knowing where it is. I’m trying to avoid the thought that if I was not disabled, I would be able to look for this charging right now on my own, despite the time. Logically, I know I should be thinking more along the lines of the fact that it is not my fault that finding this charger is inaccessible to me. But it’s hard to be logical, where internalised ableism is concerned.

I’m so tired. Despite how much I have slept during the day yesterday, as I mentioned previously. But I can’t sleep. All because of a stupid wire.

I am also now in more pain than I was earlier from trying to look for something I don’t really need. I don’t think this is helping in my lack of ability to sleep at this time of night.

It doesn’t even matter, at 5am this doesn’t matter, and yet. Why can’t I find it.

That I’m normal.

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What’s the first impression you want to give people?

And this is how I know that the internalised ableism is definitely kicking my butt at the minute.

I feel like it’s always there but sometimes it’s stronger than others. Bad news and failing things often makes it stronger, so those who read my last post likely know I am feeling this way.

The truth is I will never be seen as normal, Logically, I know I need to stop trying to be seen that way, because the truth is, I’m always going to fail. But knowing I should think a certain way, and actually thinking that way are two different things.

I know that being normal is overrated, but the world is so ableist, so inaccessible, so hard. That it’s incredibly difficult for me to not wish for this sometimes.

Hoping these feelings pass soon and I can set a new goal and move on to something that I can succeed at. I want my needs to be more than my disability. I want to be able to support myself in someway. And if I’m lucky, maybe make a change that matters in the world.

Concerts and emotions.

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This was the post I planned to write today, but as it is supposed to do, I suppose today’s daily prompt had me writing about screen time before I started this post. But never mind that let’s get into this one.

If it wasn’t obvious by my opening. Paragraph I am actually avoiding writing about this, due to it, still being emotionally raw and complex for me to deal with. However, I think this is something that I don’t write about now I have the time and space to do so. I probably won’t end up writing about it. And this is something that I think it is important to share and needs to be spoken about, or in my case written about more. All this to say just bear with me on this one.

As I write this, I’m sat alone with my babies because my sister is at a concert. Yesterday I was at the concert well at this concert, I posted the TikTok below.

Video Description: The video shows the view from a balcony at the back of a concert. The text “ Quick question, how would you feel if this was your seat when you arrived 3+ hours to a venue and were literally the first people here?”

This video is shows where I had to sit for the concert I was at yesterday. Despite arriving to it several hours early and before any other noticeable members of the crowd arrived.

I believed for this concert that I would be able to be near the front, as I am able to be in very similar venues. However, this clearly wasn’t the case and to be completely honest I was very upset about this.

It is often the case in venues that I have to go out the back door, accessibility reasons, but I honestly believe this is just because they don’t want to be sued. I really don’t want to be at the back of venue for a concert. This generally makes me very upset and reminds me that I’m disabled. It’s one of the few things that I really hate as a disabled. I would much rather be in the crowd, even if that meant I couldn’t see. I just want to be part of it. But apparently that’s too much to ask in most venues.

I think it should be the disabled person’s choice as to whether they go in a segregated area if there is one available at the venue. I do not think they should be forced to do this. Don’t get me wrong, I understand why this segregated area exists for some people as they probably feel more comfortable than they would if they were in the main crowd. my problem isn’t with its existence, but with its enforcement.

I love music. I love live music. I love concerts. I hate being segregated.

The segregated platform seems to be something that non-disabled people think disabled people need, and I very much doubt they have asked disabled people this. They certainly didn’t ask me.

It is segregation, not necessary treatment, to force people to go into a different area just because of who they are. If I phrase accessibility platforms like this, it doesn’t sound very fair does it? How would you like it if you thought you were going to have a good view and then had to go out the back, simply because of who you are, at every concert.

As I’ve said, I really don’t believe this is for my own safety, I believe it’s to stop venues getting sued by disabled people, and perhaps non-disabled people where they somehow to be injured by the disabled person.

I believe there should be some sort of waiver that the disabled person is able to sign to say they want to go in the general area, and then they should be allowed to go in the general area like everybody else. Perhaps an additional clause in the terms and condition of general sale tickets to prevent suing a venue if a person becomes injured while in a crowd should be added to the general sale tickets. In my opinion, something needs to be done so I and others that want to experience the way they want to.

Making me go out the back leaves me emotionally conflicted throughout the concert and honestly taints, the memories I have of it. That said I am not about to let this stop me going to concerts, I just wish my experience was different. To be honest honest, I just wish I wasn’t disabled when I’m at some concerts. Which when you, think about it is really sad

I apologise if this post isn’t clear or well thought out as I said, I’m still very emotionally triggered by this.

Disclaimer this post was written using voice to text. Please alert me of any mistakes that make the content unclear and I will fix them as soon as possible.

What is a lazy day

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Do lazy days make you feel rested or unproductive?

I’m writing this post at 6am and the reason I’m awake at 6am is because I fell asleep early. I fell asleep early, after sleeping a lot of the day. Thank you fatigue. But I guess I can’t exactly say it’s a lazy day because I did actually get everything done that I needed to do.

So a day that’s spent sleeping a lot can actually be quite a productive day for me at least. Though I usually do have to deal with my sleeping pattern being worse, but there are negatives to everything. Sleeping is often viewed as the ultimate expression of laziness, so I’m guessing from an outside perspective a day I spent sleeping is what you may view as a lazy day.

But the question is do I think a day where I’ve spent sleeping a lot is a day where I’ve been lazy? And the answer is no.

Maybe this is because I’m disabled, maybe it’s because I have to listen to my body more as a disabled person. Maybe it’s because I simply love a good nap. But I don’t think spending the day sleeping is being lazy or being unproductive, it’s doing what I need to do.

Now I do think laziness exists, or more accurately at least I can be lazy. To me laziness is when I have the full mental and physical energy, the spoons, to do something and I just can’t be bothered to do it. Not to be confused with when I don’t want to do something because I don’t have the spoons to do something.

I think a day spent sleeping is a good day. But this is only the case when I manage to get the things done that I need to do. As I did yesterday.

You could call this my own internalised ableism, but if I sleep instead of getting things done I do end up feeling guilty about it. But I don’t feel like I need to spend every day doing something to be productive.

So I guess this one is just to say that you should listen to your body, which I know is easier said than done. And do better than me, don’t feel guilty when listening to your body means you’re unable to do something that you were supposed to do.

It is 6am, and just my luck the fatigue is picking up again, when I need to be up in an hour, frustratingly. So I apologies if this post doesn’t make a lot of sense.

To be normal.

On By Katy DalyIn My Disability Truth, Writing PromptsLeave a comment

What was the hardest personal goal you’ve set for yourself?

And how sad is that, when you really think about it.

I think the hardest goal I’ve set for myself is one I set accidentally, and one I will never reach.

For me, though I don’t like to admit it, being normal is synonymous with being non-disabled. And while I am aware that I can’t be non disabled, sometimes I try to be as close to that as a can be.

Sometimes I think this is why I push myself so hard in day to day life. As I’m trying my best to be the most normal, non disabled me, I can be.

And it’s not that I want to be able to walk or really not to be disabled. It’s everything else that comes along with that normality. It’s accessibility and inclusion. It’s a place to belong in the world.

And the ableism and exclusion in the world around me, mean that I have translated this into being non disabled.

So while I know that I’m going to fail in this unreachable goal of mine. Whether I like it or not I think I’m going to spend the rest of my life trying to get as close to it as possible. And I know logically that this is bad, that it’s letting the internalised ableism win. But unfortunately for me it’s also productive, which makes it hard to resist doing.

I just want to succeed, which I don’t think is a bad thing. But how I get there might end up being bed for me in the long run. But as what I’m doing now works, I guess future me will just have to figure all that out when it happens.

Sometimes the internalised ablesim hits later

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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.

What happens when my chair doesn’t charge?

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This is almost my worse nightmare, second only to my chair being broken I suppose, and unfortunately this is what happened today. It always seems to happen on a day when I have something to do. Then again I have something to do more often than not, so I suppose that’s not really a surprise.

As I write this I am sat in the library waiting for my sister to come and meet me. I had several errands to complete today, and although they could have waited for another day. I had it in my head that they were going to be completed today, and so that is what I am trying my best to do.

If I had realised before I left the house this morning that my chair didn’t charge, I probably wouldn’t have gone out, though I have to admit I am stubborn so depending on what I had to do I may have risked the charge in my chair. But as I was already out by the time I realised I thought I might as well try to get things done.

Life doesn’t stop just because my chair hasn’t been charged.

If I had waited until tomorrow I would not have been able to come to the library to do part of what I needed to do. This means that getting things done would have taken at least two days, instead of one if I could do it all today.

With my sisters help I will definitely be able to get home. having completed most of the things I wanted to do today. One thing she is able to do without me if needed, take some things to our dad. The other she can’t be involved in as it is for her birthday, so it will have to wait until tomorrow.

In all honesty I am hoping my sister simply forgot to plug my chair charger into the wall last night. As having to get a new charger altogether if this one is broken is a bigger headache, but we will see.

I pride myself, for better or worse, in not letting anything stop me from doing what I want to do. This I know is internalised ableism, so please don’t read this thinking it makes me some sort of inspiration. However, though I know it will do me more harm than good, getting over my internalised ableism, brought about by the inaccessibility and pressure of society, is easier said than done. In other words, it is hard for me not to push myself to much, no matter the harm, especially when I know it gets things done. This makes instances like my chair not charging more difficult as I struggle just to let it go and accept that it isn’t my fault that I can’t get on with my day.

This outlook, though motivational in appearance, can be harmful. I may actually get stuck at some point today, when I could be safe at home. This is partially why I am meeting my sister.