In my experience as an individual, a part of society and a consumer of media, many people seem to assume that when you’re sick or disabled, different rules apply to you. They believe that you must be in receipt of help that they, as non-sick able-bodied people, do not get. They believe that excuses and allowances are being made for you that are not being made for them. They believe that you are supported in situations where they have to support themselves. This is not always or often, but only sometimes, true. Obviously it depends on the individual’s circumstances, but for many of us, different rules do not apply.
When I first became ill, I had to take time off work. I didn’t want to, but I had no choice because I couldn’t sit up by myself, never mind walk or drive or actually work. When I was diagnosed with M.E. and all the unpredictability the diagnosis came with, I was honest with my employer and I asked if there was an option to come back to work part time when I was able to. I was told that there wasn’t. I could either work or not work. There was no in between. I have since been told by a lot of people that an employer shouldn’t or can’t do this, but at the time I had no idea as I had never experienced anything like this before and I didn’t know where to turn for help apart from the union I had joined, who were of no use at all for advice or support as apparently I hadn’t been a member for long enough. That’s just the way it was. Deal with it. Rules are rules.
When I look back on this, I catch myself thinking “Why didn’t I fight?” and then I remember that the simple answer is I was already fighting every day. I was fighting to sit up, to get out of bed and crawl to the bathroom before falling asleep again for the rest of the day and waking up in agony.
I left my job because I had to and applied for Disability Living Allowance. My application was turned down. To this day, I have no idea why. I was unable to get an answer from anyone. I went to the Citizen’s Advice Bureau. I actually WENT there and I remember the experience as something like an acid trip with added pain and having to sit down in the street because I couldn’t walk any farther. People glared at me in disgust and passed in a wide circle around me. With the help of the very kind and concerned volunteers at the CAB, I appealed the DLA decision and was refused again. This was before the days of the ConDem government and their friends at ATOS. This was back when New Labour were rewriting the rules about what it meant to be sick or disabled.
When I look back on this, I catch myself thinking “Why didn’t I fight?” and then I remember that the simple answer is I was already fighting every day. I was fighting to sit down in the shower and wash my hair and drive five minutes to the GP surgery and walk the fifty-or-so steps over flat ground to my doctor’s office.
I investigated the possibility of applying for Jobseeker’s Allowance but I was told that I wasn’t eligible because I couldn’t actually work. I remember thinking “I know that”, but I was desperate and I didn’t know where else to turn. The people at the Jobcentre advised me to apply for DLA because there were no other options available to me. The same rules apply to everyone.
Before this, I had never encountered a difficult situation that I couldn’t work my way out of so I decided that I would simply choose not to be sick, decide not to be sick, behave as if I wasn’t sick. This is what we are so often told, after all. If you are still sick, it is because you want to be or you’re not trying hard enough to get better. If you want something enough, you can have it. If you fight hard enough, you can win. Illness is a battle with your own body and your own mind, or so we are told. I have always been stubborn and determined and self-sufficient and I truly believed that I could just not be sick and everything would go back to normal. This was not the case.
I looked for work doing anything that I would be physically able to do, but there were no viable options and money was running out, so I decided to go back into education because I would at least have income in the form of a student loan. My disabled students advisor was amazing and I had one tutor over the course of two years who was genuinely supportive. The rest treated me as though I was making excuses or being dishonest, even though I didn’t ask for extra help or extra time or anything that required any effort or consideration on their part beyond the acceptance that sometimes I wasn’t physically able to attend lectures but would always catch up by myself and turn in assignments on time. There were rules and if you were unable to follow all of them, you became a non-entity, unworthy of even being listened to.
When I look back on this, I catch myself thinking “Why didn’t I fight?” and then I remember that the simple answer is I was already fighting every day. I was fighting to drive across town and attend lectures and tutorials and turn in assignments and stay out of hospital.
After I finished my course, with an A as my final grade, I started my own business because it was my only option for work. Having been living on nothing but a student loan for two years (which was better than nothing and better than homelessness) I had no money, but somehow my photography business worked until it didn’t. Until the recovery time I needed between photoshoots became too long to work enough to earn the amount of money I needed. Until I was physically unable to carry my gear and arrange my equipment in my studio. Until I would spend an hour after each shoot shaking and sweating on the bathroom floor, throwing up from the amount of caffeine and questionable internet-purchased ‘energy pills’ I’d consumed to be able to work in the first place. Until I stopped being able to sleep at all, partly due to the pain caused by the physical exertion of working and partly due to the sheer quantity of stimulants that I needed to stay awake during the day. My health was my lowest priority because it had to be but there are rules for self-destruction too and when you realise that you’re following every single one of them, it’s time for something to change.
As luck (or something like it) would have it, I found a job that I could do. It was only part time but was done from a desk in an office and shifts were booked each week, so (in theory) I could work more when I was able to and less when I wasn’t. It didn’t always happen that way as the amount of work that was available didn’t always match up with my needs, so I worked when I could and had no money when I couldn’t. As luck (or something like it) would have it again, my employer started offering the option to work from home. It was still the same job but it was more manageable, although it was still a zero hours contract with no guarantee of work. When there is no work, there is no money. When there is work, everything else must take a back seat, including my health. Even zero hours contracts have rules and if you ‘choose’ to work on a zero hours contract, then following those rules is your ‘choice’. Ignore the fact that sometimes, for some people, choice is an illusion because the only alternative is no money, no food, no home, no anything.
I was, for a short period of time, in receipt of housing benefit which, as most people know, is all about rules. You must provide the following documents in the following format but the following date, even though they will be lost, repeatedly, and you will end up unable to pay your rent because of someone else’s negligence. Sometimes, you have to guess what the rules are because no-one will tell you when you ask, and even though you try to follow them, they will be changed at a moment’s notice. I found myself, on numerous occasions, having to go to the council offices in town to hand in documentation and forms because it was the only way I could be sure that they would be received and processed, and even then it often didn’t happen in the timescale which had been previously stated. It didn’t matter that I had to use public transport because I couldn’t park close enough to the council buildings and I couldn’t afford a taxi and it didn’t matter that I would collapse in the street from exhaustion, because there are rules and exceptions are not made for anyone.
I also received Working Tax Credits for a while, but this was not sustainable as it required me to know, a year in advance, how many hours I would be working each week and how much I would earn over the course of a year. This is basically impossible when you are sick with an illness that has fluctuating symptoms and are self-employed or working on a zero hours contract. There was very little room for error without being assumed to be intentionally committing fraud and potentially having to return money that I had already needed to spent on food and rent and heating. My life did not fit into the small spaces I was permitted to occupy by the rules.
I have been in debt and I have been bankrupt. Not because I was frivolous or irresponsible or bought lots of clothes or went on holidays I couldn’t afford or ignored future consequences in favour of immediate indulgence. It was because I was sick and didn’t have enough money to live on or the ability to make enough money to live on or access to help that I desperately needed and asked for and tried to find. Society says that I should be ashamed of debt and bankruptcy and I was, but I’m not any more and I refuse to be. I have managed to rebuild my self-esteem and stop feeling like I would be better off dead because I was a non-person anyway, treated with suspicion or dismissed as dishonest or useless or stupid or a failure. I wish things hadn’t reached such a low point, but the fact remains that they did, no matter how hard I worked or how much I tried and wanted and needed and believed and fucking FOUGHT.
Many people seem to assume that sick and disabled people are given things because they are sick and disabled. They believe that there is always support for us. This is not the case. There are many of us who have no choice but to live by the same rules as people who are not sick and not disabled.
Talking about this is not an exercise in self-pity. I don’t need to be reminded of all the good in my life because, believe me, I am fully aware of it and I appreciate it every day. I don’t want people to feel sorry for me or tell me how strong I am or how I’m doing so well for a sick person. I don’t believe that my problems are the worst in the world – far from it – and I don’t expect sympathy or even empathy. The truth is, I don’t even expect support any more. I don’t ask for it and I am no longer angry that it doesn’t exist for me. I just want it to be known that there are so many people living in the grey areas between the cracks in the rules because we have no other option.
When you look at us and catch yourself thinking “Why don’t you fight?”, please remember the simple answer is we are already fighting every day.