As I believe I have said on here before, social media is one of the ways that I had been able to make the world accessible to me. For this reason I hate when people start making blanket complaints about social media being bad, when in my experience it can do so much good. I truly believe that the problem lies in the way social media is used, by others. not in the social media platforms themselves.
Right now however I am locked out of my Facebook, which in a way feels like I am locked out of the part of the world, part of my world. Facebook safety security or something like that, as denied me access to an account I have had my whole life.
I’m a currently hoping my account can be recovered. But right now I feel like some of the most important people in my life, are no longer within my reach.
So I guess this is just a message to say, don’t judge what people use social media for, don’t judge how someone accesses the world, don’t judge a life you don’t understand. And don’t judge a technology, just because some of the people using it are bad.
I swear there’s no other job that you can lie so much and it somehow be expected. It makes no sense.
I really dont understand why my carers can’t just tell me the truth.
All they would have to do is be honest with me about doing the job they agreed to. And yet they don’t, they’re late and they about it. And I feel like I’m the horrible person for being so upset about it, for simply expecting them to allow me to live my life.
I’m trying to think that they’ll be one day that my carers won’t limit what I’m trying to do. But sometimes it feels like living any sort of independent, accessible life is impossible.
I’m just tired.
Tired of trying.
Tired of my trying not working.
Tired of it being so hard to try.
I don’t feel as disabled as my carers often remind me that I am. I don’t think they’re used to that. Someone that wants and believes they can live the life they want, or at least as much of it as possible, that is as physically disabled as me.
I don’t know when my carers are not going to be a problem. I need them. But I also want so badly to be free of them.
For now though all I really want is for tell me the truth.
I’m struggling with this today. Not particularly with not being disabled, but with how much of the world seems open to those who are not disabled.
I watch my friends succeed in doing things I will never be able to do. Get that job that pays them well enough to get that house, that I wouldn’t even be able to consider with the job. As you know even if I had the money to get the house it wouldn’t be accessible to me, or I would have to pay to make it so.
I have to check every level of life for its accessibility and it often fails. And I guess today that’s just draining me.
I just want to be able to live my life.
So if I’m off with you when you give me good news. I apologise. I tried not to be. I am incredibly happy for you and the success you have found. I’m just still stuck arguing for my basic rights on a day-to-day basis. Some days it feels like I will never get anywhere near what you have and I am envious.
I access my community through social media. It makes the world so much accessible to me.
I get annoyed when people say social media is blanketly bad because I get so much good from it.
Technology, this blog, Facebook, Tiktok all give me a freedom.
My community doesn’t know me. They think they know me. They know me socially without ableism. With freedom to at least try to be who I want to be in the world.
One day I will be able to go to a concert and not have an access problem, but it seems Friday was not that day.
We arrived half an hour before the start of our concert to learn that our group of three had been split into areas, despite clarifying on the phone that we would only purchase the tickets if our group could sit together. We were told that the three of us would be able to sit together, if we were happy to squeeze into an accessible space for two, and this in itself would not have been a problem, if it was the only problem.
The space we were shown to had a camera placed in it, as the event was been live streamed, a picture of this is shown below. It seems this space was double booked as accessible seating and press.
Image Description: A picture showing a camera placed on a tripod on a platform.
It took more than 20 minutes for the staff to find somewhere else for us to move into, which resulted in us missing the first songs of the supporting act, who I was specifically looking forward to seeing.
I don’t think this would have happened for the non-accessible seating, as able paying guest would be unlikely to loose there seating to camera equipment. Our treatment at the event was there fore ableist and I am in the process of putting in a complaint.
Disabled show goers, already do not get to choose where we want to sit, we already have to compromise by sitting in the accessible seating area, that is usually near the back. We are told this is for our safety. But I personally believe it is to stop the event organising being sued. I personally wish that I could sign some sort of waver that would allow me to sit nearer the stage.
This specific event had seating near the stage, so I don’t really understand any of the logic as to why I had to sit near the back anyway. But at the very least I deserve to sit in the space I have booked.
What are 5 everyday things that bring you happiness?
1. My dogs. My little girls mean the world to me. Caring for them can be a lot of work and would likely be something I would struggle to do alone. But they are worth it and I have help.
Image Description: A picture of both my dogs. A yellow Labrador and a Cavilier King Charles.
2. My electric blanket. I use this daily. Even on the hottest day of the year. It’s also one of my main sources of pain control. However this can be Innaccesssible for me to do independently due to the fact that I can struggle to put the blanket on.
Image Description: A stock photo of a white blanket.
3. A good cup of coffee ☕. Does anything beat a good cup of coffee? I don’t think so. And even though I often struggle to find the energy to make it myself. I really appreciate having a good cup made for me.
Image Description: A stock photo of a cup of coffee on a wooden tray with a small biscuit and a long silver spoon.
4. A good nap. Sometimes the world gets to much. Life is hard for all of us. And some days it’s just to hard. You can’t be a good nap to get away from this. You could perhaps say napping was inacessible to me, before I figured out a way to somewhat comfortably do so in my chair.
Image Description: A stock photo of someone on a grey sofa under a blue blanket.
5. A good hug. I do love a good hug from someone I love. Someone that cars a great deal for me. And someone I gave a close relationship with.
Image Description: A stock photo of two young children on a green chair wearing white and yellow clothes with green sandles. The children are hugging.
Update on my life and the future of the blog, not necessary to read if you don’t want to.
It has been a while since I posted I know please forgive me. The fatigue and depression like feelings I’ve been having lately have made everything but the bare minimum of existing lately seem impossible. I have a deadline coming up in the next two weeks so won’t be posting much until after then. But I then hope to get back into writing more regularly on this blog again and hopefully daily.
Thank you for your patience. And as ever leave me any requests for pictures, questions or topics you want me to talk about or just general feedback as always welcome.
I think I would enjoy my job. I certainly enjoy my area of study that I hope and had planned would lead to a job. I am qualified enough for the job I want, but lack the experience.
When you have no experience in an area and are more complex for people to take on, in other words disabled.
They often find excuses not to take you. A small problem that was easily explained in my birth certificate, was given as the reason I didn’t get a job with an agency highering as students a few years ago. Later I realised this reasoning made no sense, and that they probably didn’t want to take me on because realistically it would be very difficult for them to find me any work.
I want to be able to work, and despite being overqualified for many jobs in my area those I have gone for often seem to critique me for this lack of experience. Jobs in other areas are still often reluctant to higher me, due to my general lack of work experience.
It is so important that as I disabled individuals I have to make sure that any work I would actually get would not put my benefits at risk, or increase my contribution to my own care. As these elements are important for now I live in my day to day lives.
If I were able to find work that I could do, whether the actual setting of the job and the work I would conduct, would only be the first level of inacessiblity that I need to consider. I would also have to consider how different jobs world impact me. For example, part time work for example may be inaccessible to me depending on how many hours I work, due to the effect it has on my overall income. But full time work may be to much for me to physically handle.
What is clear is the inacessiblity of work, and living on benefits as a disabled person in society, makes the task of finding work a lot more complex for me as a disabled person; as already part of a very complex system. This is all before I have even discussed the social value and status that is awarded to those who work, and often denied to those who are on benefits, particularly disabled individuals.
A lot of ignorant opinions view disabled people as looking for not having to work, when the reality is for various reasons they are not able. This makes up what can be seen as two very different sides of the same coin.
The truth is I really just want my own income, I want to be able to earn my own money, be responsible for my own income, and at least somewhat support myself.
Though I’m not sure if this will ever happen, I try to have hope, and on the good days it’s easy to believe that it will be true.
What is the biggest challenge you will face in the next six months?
I lost my mum last year. Like everyone who looses a parent, I never thought I would have to say that sentence.
My mum has always been a big part of the work I do. She spell checked everything, she let me explain it to her 100 times. She was always behind me.
You may have noticed there was a spelling mistake in the web address for this blog, I fixed it now. But if I had my mum that would have never been there.
So my mum was a big help with the start of my masters dissertation, but I’m really struggling to get it finished without her. In all honesty I’m struggling to find the motivation to even try.
But what does this have to do with inacessiblity? I wouldn’t be writing about this here if it was unrelated.
As a physically disabled person, who is academically capable there is a lot of pressure for me to do well in academia. I’ve had this pressure from able people who say I shouldn’t let my disability hold me back. And from disabled people who say I owe it to the disabled people who can’t succeed in academia, to succeed in academia.
Both sides of my life, both halves of the whole, mean well and they just want me to succeed. I want to succeed.
But sometimes that’s a lot of pressure.
One of the reasons I was initially pushed away from active activism for disabled people when I was young, was because of the pressure.
But without my mum sometimes it feels like I’ll never be able to navigate the pressure again.
I used to pride myself on never having missed a deadline. But when mum got sick I obviously took a break. And that break meant that I missed the initial deadline. I missed a deadline and the world did not end. And honestly sometimes that feels a little rude. The world should have ended when I failed as a disabled academic, when I missed a deadline. The world should have ended when my mum died, right?
But it didn’t, and this deadline still looms over me. I don’t want to fail when I’m so close to succeeding. I really hope I won’t but I’m honestly not sure right now.
If the world were more accessible to me I wouldn’t be forced to put all my eggs in one basket like this.
My deadline is the end of April, wish me luck please. I feel like I need it.
The other day I repeated the treacherous journey that I made a week ago, which are discussed in in several tiktoks and on the earlier posts in this blog. I was fine thankfully. But I did run into a repeat problem, something that was there last week and was still in my way yesterday morning.
A white van with orange images and white and black text blocking a pavement on a corner next to a pole.
I ran into this van.
The same van that had meant that I had to go into the middle of the road on a corner in the dark last week.
After posting this again to my Facebook group it was suggested that I contact the email address on the van and explain my access problems because of this van.
I did this and received a reply shortly after. To my surprise on the return home this van was no longer there and therefore I was able to take this corner on the pavement. Which is a much safer option I think you will agree.
I did not expect such a response or action when I raised concerns of this with with the Facebook group and then the company. I was very pleasantly surprised.
It felt nice to know that I was actually able to make a difference to my own accessibility and no doubt the accessibility of others.
Perhaps this blog, and my social media posts will become more then just raising awareness and a tool for catharsis. Maybe they, or I, can actually lead to some real change in the world.
Somewhere it seems some are listening to me, and you know what that makes it worth the hate.
When I arrived at my puppy training class today with my little girl there was no car blocking the pavement, there were however bins that I could get round.
However even I returned this car had parked near the bins, meaning I was no longer able to get around.
Technically this car didn’t block the pavement, however because of what was already already on the pavement where this car had parked made the pavement in passable and inacessible to me independently.
Though my sister was able to help me in this situation. Alone with the dog this would have been a lot more difficult if not impossible for me to deal with.
My Inaccessible Life 