Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
The carers were late for my call this morning even though I told them I had an appointment this morning. Luckily as I was able to rush, I was not late for the appointment.
But I’ve now put in my first complaint with this company. I understand they’re busy, and 7am is a hard call, but they shouldn’t have agreed to take on my call if they couldn’t do the time.
The time is important, for me and for my independence. And they’re making living my life feel impossible by simply b
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.
Was today typical?
The carers were late, and this had now become my norm.
This honestly ruins my day. I’m the type of person that has to be up and out of the day to make anything out of the day. And the carers being late are ruining that.
They’re blaming other clients. Yet they can come on time when they know I have an appointment. So they can come on time, they just apparently don’t want to.
I really don’t understand why it’s so hard for people to do the job they agree to do. But I do know exactly why it surprises them that I need to be somewhere everyday, that I have a life. The answer to that is ableism.
I’m just trying to live my life and they are making it so difficult and so inaccessible.
Having to deal with my life and make something of it, is hard enough without there lies and inability to do there job on top.
I may need to change companies again. Annoy my social worker, by trying to live my life. But I honestly font want to do any of that. Having to do all of that is making me feel even more disabled. I hate it.
My carers were two hours late this morning. This is an improvement on the previous day when they were three hours late. However, when they arrived they said that they let me lie in.
I’m just going to say this again. It’s not a lie in if I don’t ask for it. You’re not doing me a favour for being late.
Luckily today I do not have plans but next Saturday I do. It’s not up to you to decide what I want or what’s best for me.
I don’t understand why it’s so hard for people to do their jobs. And when they don’t they make the life I’ve built around me inaccessible. Most people aren’t going to care that I couldn’t be there because the cares decided to let me lie in. You’re not doing me a favour.
I’m waiting for new carers. This morning after trying to confirm my care for this week, I learnt that I’ve been completely switched over to a new care company starting this evening. Don’t get me started on the fact that they can’t do the times I’ve asked for. I’m so angry about that. But right now I’m literally waiting for people I’ve never met before that don’t know me at all. To come and get me ready for bed, to see me naked and I’m honestly really nervous. I hate this.
When rolling me the morning the carers were not careful enough to ensure both my legs stayed on the bed. A combination of this and the sheets fabric meant that both my legs fell off the bed. They are now hurting me and will probably be sore for a day or two.
I am lucky that most days after my care my pain will almost completely go or at the very least go to my level of normal, if I am positioned correctly in my wheelchair. But after this incident I don’t think that today will be one of those days.
I’m well aware that accidents happen but sometimes they happen because you don’t take enough care. In situations like what happened to me, when they happen you are not the one left suffering, someone else is. So please take extra care when doing something when someone is at risk of becoming hurt if you do it wrong.
Tonight is another shower night that I don’t want but will have to take. In all honesty I don’t want any of my care that I will have tonight.
I’m in one of those moods where I don’t want to be touched, but I know that I’m going to have to be.
Showering when I want is inaccessible to me. Going to bed when I want is inaccessible to me. Being on my own is innaccessible to me.
And while I should be used to all of that, and most days I am. Some days are just hard. Today is one of those days.
You know that saying, the only certainties in life are death and taxes. Well for me it’s death, taxes and carers.
This morning I had a new carer, from what I can tell she’s new to the entire profession. She’s young, and while having carers my age and younger has been an emotional process for me I think it is one that I have gotten used to.
It did however just dawn on me as I watch her learn almost every part of my personal care as if it is new to her, that I will always have new carers. There will always be people in my life for whom my life and my reality is a learning process. Which is just something else I’m going to have to get used to.
No criticism to the new carer this morning. I think given how complex my care needs can be when compared with others that they care for, she did extremely well. I hope I get to see her improve.
What is your career plan?
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.
My Inaccessible Life 