It’s difficult to say whether this is because I’m disabled or because I’m relatively poor. The two are very intertwined for me.
Tonight I had water come through a light at home. It’s been temporarily made safe as an emergency. And while it will be fixed at some point in the future, it will never be made to look as if it didn’t happen. That’s never a priority of the social housing.
Don’t get me wrong I understand why, of course. But just because you understand why something is the way it is, doesn’t mean that you have to like it that way. And because finding income is shall we say more complex for me, in no small part because of my disability, there’s nothing I can do about it off my own back.
I’m stuck with the minimum. Not to sound ungrateful, but the minimum gets tiring.
At least I have four walls, heating, electricity and food. And most importantly my babies are safe, and as well looked after as I can make them. I know I need to be grateful. But watching everyone else have the house they dream of, have a house they feel like is there’s when I can’t, is just hard.
So I found out today that I didn’t get on the course I applied for. The reason I didn’t get on was to do with the ability to support me in the area I wanted to study not because of my own qualifications or ability.
It has made me sad I won’t pretend it hasn’t. But these things do happen, and I’m a firm believer that it will all work out in the end.
That said, when you disabled your options, are already limited by living in such an inaccessible world. So when you go for something and don’t get it. You feel like you don’t have any alternatives available.
I can’t just apply for any job, I can’t just go and work another field. I can’t even seem to get working in my own field.
Right now, I feel like I have no options. Academia is the only place I felt like I had any control and chance of success. And to not be allowed to continue what I wanted to do, and not through any fault of my own. It’s just difficult to accept I think.
I really want to do something with my life. The rest of the world either doesn’t want me to do anything or doesn’t seem to care if I do anything. Except my dad. And it’s nice to have his support. He doesn’t realise how complicated the world is to be a part of when you’re disabled. So sometimes this support can feel like pressure.
I feel like I’m the only one fighting for myself. And I’m not sure how to do that right now.
I’ll pick myself up and I’ll try again. But I just need to be a little bit sad for awhile.
In what ways does hard work make you feel fulfilled?
But working hard at something to me means I do something that matters to me. Something that was difficult for me to do that I pushed through in order to finish it. It doesn’t matter to me what I had to push through of what I was trying to complete. Whether that was writing a really hard essay, or making a coffee. If I had to push myself through it, then it was hardwork and if I complete it I feel fulfilled.
Now this is complicated because its a fine line between pushing through hard times, and as a disabled person trying to overcome my disability.
Overcoming my disability isn’t something that I try to do, or anyone should aspire to do. My disability is part of who I am and I deserve recognition as in individual without overcoming who I am. Yet I take pride in working through a difficult task. And I don’t always get the balance between the two right. Between working hard and trying to overcome who I am.
So, my carers told me this evening that my calls will be changing again. Specifically, they said that someone else will be coming in the morning, but they did not know who. The problem isn’t really that someone different is coming, though that can lead to awkward situations, it is that I don’t know if they will be coming on time.
Often my carers take it upon themselves to decide that my plans can’t be important enough for them to need to come as early as my call is scheduled for. Essentially this comes down to their belief that I as a disabled person can’t have plans that are important enough for them to come on time. There ableism is obvious to me even if they don’t see it.
So anyway, the result of this is I may not be able to do the things I have planned to do tomorrow if my carers are late. Not that they seem to be bothered.
Honestly, call me a hypocrite or whatever you want because I don’t work myself. But I don’t know any other job besides home care where people do not take times seriously. They literally don’t think disabled people have anything to do, it’s beyond frustrating.
My care is specifically provided by a company as it would take a lot of individual carers to ensure the consistency in care that I need, and this would be incredibly difficult to find. However, the downside of this is that they can change my care whenever they want, like they seem to be doing a lot lately, and there is nothing I can do about it.
This is one of the several reasons that I don’t have a job and would find it incredibly difficult to get a job. Namely, due to the inaccessibility of the world around me, which my carers do not help with. Though they are necessary, they make the problem of inaccessibility worse. But the fact they are necessary means there is nothing I can do if they literally will not get me up on time in the morning. Yes, I can complain, but that won’t get them there on time.
Anyway, lets see what happens, and if I get to go out tomorrow.
TV shows mainly. I can’t listen to music as I find it too distracting.
I can’t work in silence, probably years of a busy house. That said music triggers my Maladaptive Daydreaming. So I’m the weird person that takes two screens when working in public, but the other screen isn’t work.
If I want to be productive music is not the way to go as I have said before it triggers my Maladaptive Daydreaming.
TV on the other hand can be quite helpful, as I struggle to work in silence. Though it has to have been something I have seen before or I’m not overly interested in, otherwise I will become too interested in it and not in the work I’m doing.
My current TV shows for this are Bob’s Burgers, Futurama, and Call the Midwife.
Is there anything that you do while working which actually doesn’t help you focus?
There are lots of things that I do day to day that I’m sure some would consider a waste of time.
I spend a lot of time scrolling and posting on different social media apps. I sleep a lot. I watch a lot of TV. On good days I write a lot.
Some if not all of these things that I do can be seen as a waste of time, particularly the sleeping. But they are all things I enjoy doing, therefore I don’t think that they are. The sleeping is the one that can cause me the most problems, it can make those around me think that I am lazy or that I waste time. But I have somewhat explained this in my previous post.
There are other things I do, like looking for work or writing more professional pieces which I’m sure fit the realm of being productive. And as is usually always the way doing these things is distinctly less enjoyable, but as an adult whatever that may mean, I attempt to do them anyway.
But I spend more time doing the things I enjoy. Not least because I have the time, if not the energy, due to my lack of employment. Some would see this as being lucky, to have the free time, I tend to disagree however as I want to work. And I am trying to find work that fits into my life and the control I have of it, even if this means I have less energy to do the things I want.
Anyway, I got a little distracted there, I apologies. This post is really intended to say that as long as you enjoy doing something it is not a waste of time. No matter what you spend your time doing, or what others may tell you about what you spend your time doing.
As a disabled person I often feel like the term ” career plan” is a little bit ignorant of reality, a little bit too optimistic.
I wish that I could have a career plan and simply stick to it. But the continued in accessibility and ableism of society makes this difficult.
If you’ve been following me for a little while you will know that I am trying to look for work. At this point I am trying to look for any work from home, as this is the most accessible work to me at the moment. This is despite my qualifications in other areas.
While qualifications are important to some career plums, experience, may also be considered equally if not this is more important. Well I have the former in my chosen career area, education, I lack the latter.
When even my University struggle to find me experience in this area, it is not surprising that I find it so impossible alone.
It was suggested to me recently, that I complete volunteering work to get the necessary experience in order for me to get a job. As I haven’t got passed the interview stage previously due to this lack of experience. That is if I believe the managers of the job I did manage to make it to the interview stage with, that my only flaw was my lack of experience, and this itself is not ableism. My difficult in getting experience is surely reflective of the ableism of society. This suggestion that I would just be able to get experience in the field is definitely ignorant of the reality I have experienced.
This is all without considering the fact that the physical energy it would cost me to work, makes it only worth it for me if I am paid for the work that I do. I am far to qualified to put in the hard work involved in this job, simply for the sake of volunteering. This might sound harsh, as if a job is just about money. But I think I am just facing the reality that money, proper payment for hard work, is important.
And finally, lets not forget that I deserve to be paid for my hard work, and the fact I’m disabled, as a result of which a job is even harder for me to get. By that I mean that I cannot just take any job that comes, doesn’t mean I should simply volunteeer. I also want to add here that I have a great deal of respect for those that choose to volunteer, but I want paid work, for my own self worth, to prove I can earn my own money.
So you can see my chosen career path is a little complex, and I’ve only told you a very small part in all of this. I haven’t even begun to consider here the difficulties that could be involved in adapting a role so I can then complete were I to get it. It is all just very complex.
So I am looking for any job that I can do from home, just to be doing something, and of course earn a little more money. Though the same issue of lack of experience does also plague me here, at least other issues of access will not, when I hopefully eventually find something.
It might also be worth mentioning here that I am trying to get in to a professional freelance capacity if I can, and maybe eventually an author, in my longer term plans. This way I can at least give some of my dreams a fighting chance.
Do wish me luck with all of that, and I wish you all the best of luck with your career plans, and if necessary your back up career plans. I hope whatever you do works out for you.
Getting a job is something I’ve wanted to do my whole life, but as a disabled person this is hard to do for several reasons. The exact area of my job is almost irrelevant, having a job is something I just want to say I have done, and also some extra money is nice.
But the world we live in makes it difficult for disabled people to get a job. For me specifically, my area of study is education, so the ideal job I would get to take advantage of my qualifications would of course be a teacher. Though I often feel like this is one of the most inaccessible areas for me to gain work in. But it is my passion so I try.
The inaccessibility of the education system (and the rest of the world) honestly explains why I do not have a lot of experience in teaching, (and by extension many things in the world). This leads to a lot of anxiety when I do actively try to do do things in the ‘real world’ including getting a job because I simply have not done it before. I often feel like an adult with the confidence of an child, and yes I’m aware this is self infantisation, but it is also the truth.
So when I had a phone call a few hours a go from someone asking me about teaching roles, my experience and what I was looking for, to say I had mixed feelings about it all is is honestly a bit of an understatement.
I obviously want a job, but the every time the possibility of obe gets closer, I become terrified yet again. And I know that the only way too overcome these feelings it’s for me to actually get a job, as with much in my life I won’t know how I deal with it until I am dealing with it. But unfortunately that doesn’t make the thought any less scary.
Somewhat related to this search for work it might be worth mentioning that I’ve also been looking for online work, while this is in particular what I initially wanted it is work that will definitely be more accessible to me and that does less than some of the anxiety evolved.
All of this is of course without considering the effect on the benefits I receive. I of course need to make sure that I am knocked in a worse position financially simply because I try to work, as odd as the sounds it can and has happened to some people on benefits, so I do have to be careful.
This is to say the least a complex journey as many things are in life, particularly when you are disabled, We will just have to see where it goes. And while I don’t know where I am with this yet, but hopefully it will come to something and before too long I will be earning my own income in one way or another.
My Inaccessible Life 