Trigger warning for reference to (primarily institutional) abuse from care agencies, social workers, and carers, Includes some specific examples of incidents with minimal detail. Reference to post traumatic stress response.
Chronic illness doesn’t run to a schedule. My body isn’t going to behave itself at 6,30pm just because you’ve decided that’s when I should have a wash. Similarly, few people will eat all of their meals at precisely the same time every Single day. Don’t get me started on toileting. Take a shit at precisely the same time every morning? Good for you, but do you want to take a bet that you’ll never need to go any other time? You can hold on for 12 hours overnight right? I mean if you can’t, you know there are options other than toilets right? Surely you could just shit yourself and clean it up in the morning?
Care cuts mean that I am the victim of continuous abuse. That’s what the cuts are – abuse, plain and simple. Don’t try to tell me otherwise. The government and councils are using their power to deny me my basic Human rights and dignity. This means that I am always on edge. I am always in ‘fight or flight’.
If you’re a care agency or a social worker, don’t expect me to trust you fully. It shouldn’t take much exposure to either to know the system is fucked. If you can’t see that then as far as im concerned I have very good reason to doubt your intentions – doubly so if you hold this against me. Maybe you are one of the good ones trying to do your best in a bad system – but then you should sympathise with how infuriating and upsetting it is to try to navigate.
Likewise for carers and PAs except that I’m aware you may not know just how messed up the system is. You could just be going about your job as best as you can. Here’s the important thing – I don’t know you. I don’t know whether you are a good person or have good motives or not, so don’t take it personally if I am weary. And if you expect kudos just for the basic fact of not abusing me? Just no. In fact, it’s usually abusive people who expect those gold stars because they believe they are good people. If you’ve just started working for me, remember that I don’t know you fully and am getting to know you and whether or not you are safe. You’re probably doing the same – but the difference is that without a doubt, you have the power in this situation. Sure, I might have some influence over your future employment (not something to be sniffed at) but I am putting your life in my hands. In the case of my current level of disability that means me letting you use keys to get in to my home before I’ve even met you, and meeting me here alone when I cannot move from this bed. Do you really think that just because you hold the title ‘carer’ that means I feel safe?
Carers and PAs work really hard and you deserve to be shown appreciation where it is due, but I also need to get on with my life. At the end of the day, this is a job you are being paid to do. I will show appreciation for your work, but I am not indebted to you. You are not doing me a favour, this is paid labour. Please don’t come in to this job thinking that you are doing good helping people, but feeling resentful if you are not given your own way all the time. I have had carers before tell the agency I’d told them “I don’t need to appreciate you, I pay you to do this” when in reality a carer had threatened to leave me with my basic needs unmet because she had decided I was complaining (I’d asked her to be more gentle) and in response the suggestion of being left without this assistance I had said “But this is part of your job, I pay you to do this.”
Expressing emotion and frustration is not abuse. It is possible for clients to abuse their carers and PAs and any accusation should always be taken seriously – but all too often disabled people are accused of abusing carers and PAs simply for being human beings and not being perfect charicature of a good,worthy disabled person. I’ve been accused of abuse before by carers who were abusing me. As someone who has been abused I took this accusation hard and agonised over it because I couldn’t bear the thought that I might have inflicted on others the same that had been inflicted on me.
You are here in a professional capacity, I am here as a vulnerable person trying to live their life. As a carer you might be in ‘job mode’ and be able to keep that hat on when you are here knowing you can take it off as soon as you leave – but I am in life mode. I can’t keep a professional hat on 24 hours a day when I’m just trying to do basic things like go to the toilet.
Further to my last point, even disabled people with the most challenging behaviour need carers. Hell, even really horrible disabled people need carers. The system at the moment means that rather than carers being given the tools they need to cope with these situations, they find themselves in a position where their only option is to turn the job away. To be brutally honest, I have experienced a lot of carers who refuse to do anything other than the easiest of jobs (they have even worded it as such). There is nothing that obligates care agencies to keep providing care to clients, and if all carers are saying they won’t do the job because it is too hard, then care agencies often just give the disabled person notice meaning many get passed from agency to agency.
‘Complex’ is not a dirty word. Many illnesses are complex. Combine this with the complex post traumatic mental health issues that can happen from sustained abuse from the health and social care system, and people’s care needs are going to be more complex than a quick 5 minute toileting visit. Often, to social workers ‘complex’ traslates as ‘difficult’, and to care agencies it translates as ‘not cost affective’. I’ve had social workers act like I should just stop being difficult, and care agencies tell me that I was losing them too much money – or refuse to work with me unless I was considered ‘complex care’ which pays more money. Of course even if I did qualify as complex care, this is not going to get paid out if the social worker thinks I can just snap out of it.
I am so, so tired – and I don’t just mean because of my condition. Imagine if you had to explain everything you need in your life? Think about how much instruction I just had to give you (carer or PA) in order to get that cup of tea. Think about how long it took me to use the bedpan and how much manhandling was involved. Compare this to what you have to do to get a cup of tea and to go to the toilet. Don’t feel sorry for me, but have compassion. Understand that whilst you may be the one doing a job, I am also working really hard – and whilst you get a pay check, I am working for assistance I have a basic human right to.
If you’ve been used to PAs it can be pretty horrible going back to using a care agency. When I hire people myself I can check (to a degree) that they are competent and that we are compatible as human beings. I can do background checks and I can have a chat with people before they start the job. I would also usually give you training and either do a background check or at the minimum have you vouched for by a mutual friend. When I use a care agency the most I ever know in advance is a carer’s name. Sometimes I don’t even know that. I have to assume that the agency did background checks and that they have given adequate training and checked for competency level. I have no idea if we will get on brilliantly, or if they would have been my arch nemesis in any other given situation. I don’t even know if they will understand the basics of what I am saying. My current agency gets new carers to do quite a lot of shadowing – but even then, it is amazingly easy for a carer to stand and look like they are understanding what is going on when in truth it is going over their head entirely. I don’t usually know how it is going to pan out until they start their first shift without support.
Lastly, if something matters to me, respect it as valid – no matter how small it seems to you, (This one goes for friends and family too). As I was writing this I opened my snack for the night and found that I had been given cashew nuts, and not almonds as I had asked for. It’s not a massive deal, and I probably won’t even mention it to the carers, but it’s just one more thing to signify how little control I have over my life, you know? This will have been one of many, many mistakes like this today. It builds up, and it is so much harder when that lack of choice and control is due to human error – because you know that things would be different if someone had listened, or done their job correctly. So if I seem like I’m making a big deal of something small, maybe I’ve just reached my level of cope for the day – or maybe for some reason that signifies something much bigger for me.