Tag: This made me wish I wasn’t disabled

Why the time of a call might matter to the person you care for. 

On By Katy DalyIn My Disability TruthLeave a comment

From the perspective of someone who’s had care for more than half there life.

It can seem pedantic like someone is not respecting the carers job, if they get upset when a carer tries to come early for a call. But it’s not that simple.

I want to start this. It’s saying that I respect carers and the job they do. I believe they deserve respect, better pay, and better work environments. But in terms of this post, that’s the last time I’m going to take their side in this situation. This is about what it is like to have carers, not be a carer.

Nobody wants carers. Nobody wants care. Many people are acutely aware of the fact that they are in the minority with what they need help with. And it’s draining. You, as the carer are the one that chooses to be in that situation where you are providing care. This is your job, a job you chose, as much as anyone chooses to work. And if you didn’t have a choice in getting a job as a carer,  that is not the fault of the person or people that you care for. Remember that.

If a person needs care, whether that is part of what they need to get through day to day or getting them independence. It doesn’t mean that accepting the care is going to be easy. Personally, it took me a long time to accept that I needed care, sometimes I still struggle. And I am a person who’s needed the kind of help I now get from carers her whole life. But getting it from carers was still an adjustment, that I’m still adjusting to.

One of the most difficult parts about needing carers for me is the tuning. It’s the fact I can’t just go to bed when I want or get up when I want. That it has to be so regimented to ensure that I get it. Can you imagine for a second if you had to get up and go to bed at the same time every day? And someone came to your house just to make sure that you did as you were told.

If you get your care from a company, and you’re very lucky you might get your care at or near a time that you actually want it. If you’re extremely lucky they might actually stick to that. And if anyone is reading this thinking why don’t you just get a PA (meaning self employed carers over a company) they are a lot more difficult to get than it might seem. Companies provide a level of consistency and security in care, that some people need.

Whether or not you get to choose the time of your call, which most people don’t have the luxury of doing and have to compromise.  The time that they do come can be very important to someone. Knowing what time they come and expecting them to come at that time, can feel like the last part of control you have in an area where you feel powerless.

Like if I have to do something at that time, you will do it at that exact time. And it can be difficult to have that time altered, as you feel like that little bit of control you had over your own care is gone.

I just don’t think you can understand what it’s truly like to have carers until you’re in the situation where you need them. Some seem to view it as a choice we should be grateful for. But honestly, it’s not, and it’s hard, and I think carers need to remember and respect that.

You made the choice. We didn’t.

Concerts and emotions.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

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.