Do you ever have those days where you feel more disabled than others? A stupid question really, especially for those of you who aren’t disabled. There’s always going to be stuff you can’t do, like opening the fridge because your wheels get in the way. Or putting your shoes on because, for a start, you can’t sit up without instantaneously falling over, and then if and when you’ve mastered that, you find you can’t actually reach your feet anyway. Or not quite making it to the loo because Nature insists on calling at the most inconvenient times. But those situations are hilarious and they’re genuinely what I love about being disabled. You never know what’s going to happen. Putting all the ‘Living My Best Disabled Life’ moments aside though, there are times when it’s hard to strike the balance between knowing what you can’t do and knowing what you’ve never been given the chance to do.
To give you the context, my life revolves around a Personal Budget which consists of the care hours I’m allocated. For me, this is 63 hours which are provided by Social Services and 12 which are given by Continuing Health Care. And for those who don’t know what the latter is, it’s basically a pot of money that helps people with their health needs. When I first came into Independent Living i.e., did what most 18-year-olds do and moved out of my parents’ house, I was deemed to only require 53 hours from Social Services. This posed a bit of a problem for many reasons: Firstly, I only had 53 hours in which to fit my entire life - everything from getting up to going to bed. Secondly, outside of those hours, unless it fell into the realms of night care, there was no way of me going to the loo. And thirdly, due to the nature of what’s known as Adult Services (which has nothing to do with Fifty Shades) there was no appropriate physiotherapist to train my Personal Assistants. In turn, this left me as stiff as a board and increasingly chair-shaped for 4 years.
So, I fought to have my health needs met and I was eventually awarded a Continuing Health Care budget. Social Services also decided to bump my hours up which meant I went from having 53 hours per week to 75. And when you wait for a bus… I found a physiotherapist to train my staff to do my exercises on a daily basis. All was well in the world.
Flash forward to last week and it was time for the long-overdue annual Health Care review. The reassessment which had been overlooked for the past 3 years, was to decide whether I still need the Health hours, to which the short answer, in my mind, is ‘yes’. As far as I’m aware I haven’t become any less of a cripple and I still require daily physio – although sometimes, between the logistics and the chaos of life, it’s hard to cram it in. The long answer is what you have to give in a review, so here it is:
“Yes, I am prone to choking. Yes, I need a hand with chopping food up because my left hand has a severe case of Cerebral Palsy. Yes, I need assistance with meal preparation because a pan of boiling water and I don’t mix. Yes, I need help with showering and getting dressed because my legs and left hand have a severe case of CP. Yes, I am an anorexic in recovery which makes my mental health a managed need. Yes, I need a driver in order for me to access the community. Yes, I can’t go to the loo on my own. And for the last time, yes, I need physio”.
At this point, I can guess what you’re thinking, and the answer is, ‘no’, they haven’t (as of yet) cut my hours. I’m also not writing this because I’m feeling sorry for myself because I had to give them a list of all the things I cannot do, I’m disabled – It’s part of the job to reel off a bunch of worst-case scenarios to anyone who asks for them. But the more I think about it, the more I realise my PA’s spend the majority of their time sitting, waiting for me to need a pee whilst feeding me and making sure I’m clean (in the non-druggie way) in-between times.
What I’m saying is I’m caught in a catch-22 situation. I’m well aware that 80% of the time I don’t need 75 hours’ worth of care in a week; aside from the physical constraints of CP, I am fairly independent. Essentially, for the most part, I would be able to survive with someone popping in a few times a day. If I had to be somewhere for a certain time, I’d either schedule it so that I could be chauffeured or just figure out how to get there on my wheels. Having said that, there are days when I need to pee every half an hour, I’m permanently starving, and I need to be in Timbuktu by 10am. I can’t predict when the chaotic and quieter days are going to be. Even if I could, I’d be shooting myself in the foot to tell anyone.
The problem with the system is that as soon as you so much as utter the fact that “Monday might be a quiet day”, your hours are reduced. In turn, every day becomes a quiet day because there’s only enough time allocated to get up, get dressed, stare at the same 4 walls and get back into bed. Any independence or potential independence you could have is quashed because there’s no time to explore it. Your only other option is to give a rundown of the day when you need to travel to Timbuktu and stop for a pee after every mile. This is results in an abundance of care hours where someone is assigned to be glued to your side. And so, there’s barely enough room to breathe, let alone see what you can do for yourself.
Don’t get me wrong, I appreciate what the care system has done for me because without it, I’d be stuck in bed 24/7. I also totally understand that not everyone has the luxury of independence in any way, shape or form. However, my overriding conclusion is that we, the disabled folk, are trapped between a rock and a hard place which ultimately makes us feel more disabled than we actually are.