I have this great pill box, really useful thing. It holds a whole weeks worth of meds in seven individual day containers. I particularly like that it has sections for four different times of day as well as a PRN section, which was hard to find. I love that when I go out for the day I can just stick that's days container in my bag and go. It's a great pill box and it makes my life so much easier.

So why is it that every time it's time to refill the thing I can only bring myself to fill the next day, all the while telling myself and my partner that I'll refill the whole thing tomorrow? I tell myself that I'm so tired, that I forgot and it's now 11.30pm and it's too late to do the whole thing. Often my partner just does it and I'm so relieved, it feels like a huge weight off. It could be that I have so little energy that this is just the one extra thing that I can't take. It could be that my brain is fogged from those medications and I find it hard to count out all those tablets. It could be that I just don't like doing it. But somehow I think it's more than that.

That handy pill box is a constant reminder than I will still be ill in 7 days time. That I will still need all those tablets just to make it through the day. It is a billboard screaming that I will never recover, just innocently sitting on my bedside table in all it's rainbow coloured plastic glory. When I realise that it is no wonder that the last thing I want to do is refill it for another seven days, today I will allow myself to just fill tomorrow with no guilt.

Nice Driving

I know exactly how wide and long my wheelchair is. I know exactly how much space I take up and I am an excellent judge of where I will fit. I have excellent control of my wheelchair and can stop very abruptly if needed, with no braking distance required.  I am also very aware of my surroundings when I am wheeling myself.

Still people insist on leaping back as if they were in my way, some when they are many metres away from me. People pull their children back and clutch them protectively against their bodies as I pass them, like I will crush their child under my wheels. People also stare constantly; they stare as I weave my way through crowds, they stare as I eat in restaurants and they stare as I look at clothes in my favourite shop.  They stare. These things hurt me, they make me feel like public space is not for me. Like having a disability revoked my right to community spaces. As much as these things hurt me, they are not the thing that bothers me the most. No, they are not the behaviour that makes me wish I could send people to the special level of Hell Shepherd Book talked about. After that build up, this may seem rather petty but it happens all the time and it is infuriating.

I am out in town with my partner, in a big shopping centre. We wait for the lift with a group of other people, usually families with a child in a pushchair or a pram. We allow people to get off the lift, this usually entails me wheeling a way back from the lift and flattening myself against a wall - otherwise people look at me like I am an immovable object in their way and they find overly complicated ways to pass me, that is if they don't freeze up in panic. Anyway this moving back usually means everyone rushes into the lift before me, finding ways to take up as much space as possible. But still there is space for me, even if it'll take a bit of manoeuvring to get into place. I perform that manoeuvring with grace, trying to ignore the pained expressions from the other lift occupants and the occasional panicked gasp - usually men to be honest but sometimes women to. Sometimes people move their hands and I tend to think of that as backseat wheeling. Once I am in place, my partner finds a space and the lift doors close. This is when someone looks around at everyone with a strained smile and cracks "Nice driving!". Sometimes someone follows up with a joke about "That thing needs mirrors!". And that is when I think about the special Hell.

It is condescending and Othering and not at all original. Unless you see me perform a backflip or win the Grand Prix or do something else out of the ordinary, it's an unwelcome reminder that you see me as different. That my presence  makes you uncomfortable. I am not responsible for your feelings, it is not my job to be the butt of your joke. Of course I will smile or try to laugh, but inside I'll be cringing. Sometimes I feel like responding with a joke of my own, "Nice walking" I could say with a smile. But somehow I don't think you'd find that so funny.

Wheelchair on board

He calls my name, I confirm my identity and move towards him. We go through the double doors side by side, then without warning he drops behind me and starts pushing me forward down the corridor. I clench my jaw in anger, wanting desperately to whirl around and give him a piece of my mind. Instead I bite my tongue, lean back in my wheelchair and sit in silence. He has all the power, I am reliant on him to get home.

He pushes me up the ramp into the ambulance and I try to take control of my movement. He ignores my obvious discomfort with him manhandling me and keeps moving me back and forward as he gets my chair into the right position.

"I can move myself, you know, just tell me where I need to be," I say. He misunderstands me, thinking I want to transfer to an ambulance seat. I try to explain but he interrupts me.

"I'll just move you myself!" He says with a laugh. My skin crawls.

My chair is strapped to the floor at the front and I put my brakes on. He takes them off and moves me back a millimetre, to me it is now clear he knows I am uncomfortable and he doesn't care. He moves behind me and attaches more straps to my chair, finally he leans over me pulling a seat belt around me. I grab it and pull it around my front, holding it at my side so he can secure it.

He gets into the front of the ambulance and we are off. I feel sick to my stomach and in my head I rehearse what I will say to him once I am safely by my front door. I picture myself twisting out of his clammy grip and telling him everything he did wrong in our fifteen minute interaction, I see his face as I tell him that I will be calling Patient Transport to complain and I see myself triumphant as I effortlessly roll up the ramp to my front door and let myself into my home with no help needed.

We pull up by my house and I unplug the seatbelt just as the vehicle stops moving. I unclasp the straps at the front of my chair as he does the ones at the back, I will give him no more opportunities to touch me. I push my chair backwards a few centimetres towards the ramp, he jumps to grab me as if I am stupid enough to try to go down a ramp that steep backwards. He pulls me down the ramp and tips me back to go up the curb, both with no warning. As soon as I am securely on the pavement I pull away from him and start moving towards my house. I just want to get inside, there will be no showdown, no triumph.

He says something to the back of my head as I roll up the ramp towards my door. I don't hear what exactly and I don't acknowledge it. Let him think I am rude.

He never introduced himself, never once asked my permission to touch me and never once explained what he was about to do to me. I may as well have been a piece of furniture, just a wheelchair.

Please never say...

There are a lot of phrases that I dread hearing from people, many of them because I have no idea how to respond to them. How exactly should I respond to being told how brave I am? This usually comes from older women and is accompanied by a hand laid on my shoulder or knee. Now does this phrase come after they've just seen me wrestle a tiger to the ground? No of course not, my extreme bravery is being seen in public whilst disabled. This action is the height of bravery according to the older 60s in my town, perhaps I should be awarded a medal. The other phrase along this line is "You are such an inspiration" and I have really no idea what to say in response. I do not feel that braving the town centre on a Saturday afternoon is really that inspirational, neither is being in Tesco doing my weekly shop. This is another case of being seen in public whilst disabled, and yes I do get that for older people it wasn't something they saw much of. But there have been disabled people living independently for the last 20 years, if not more, and they have to get used to seeing us sometime.

The other lot of phrases I hate hearing are more difficult to explain. Lately I've been hearing "You are looking so much better/You are doing so much better" quite a bit, from members of my family especially. Now to those saying it, it is a phrase of joy because to them I am looking/acting healthier. But what I hear is "Clearly you have been faking being sick this whole time" and part of me knows that is my anxiety talking, but it is also a lot about the current attitudes regarding disability. Here in the UK we seem to have two types of disabled people, the inspirational and the fakers. Neither is a group I particularly want to belong to, but being classified as a faker is a lot more terrifying as it can lead to financial penalties. Now I don't think my family or friends are going to report me to the benefits agency, but there are other people on the peripherary of my life who might. So being told I'm looking healthier is really quite scary to me.

I read a really great column a while back by a women talking about how she had found herself 'performing her disability'. What she meant by that was that in public she was often acting less able than she actually was that day in order to avoid being confronted by a complete stranger. To the able bodied that scenario probably sounds preposterous, a stranger would confront you about your disability? It does happen, it's happened to me on more than one occasion. Recently I have noticed that I am doing something similar, I am a wheelchair user due to chronic pain and therefore can walk although not without excruciating pain. When I am out in public I try not to move my legs, because I am sick of people pointing and staring if they see any movement below my waist. Believe me that complete strangers do watch me very closely, I suspect in case I am one of those 'fakers' because obviously the only people who need to use a wheelchair are those with a form of paralysis.

So what was the point of all this? I suppose be more thoughtful about what you say to people and if someone in your life asks you not to say a particular thing to them, then just don't say it. You never know what those words actually mean to them, no matter how kindly you meant them.

Here goes nothing

I've never really understood why people feel the need to make a change around the New Year, like December 2015 will be so completely different than January 2016. But here I am making this blog, a blog I've been thinking about making for a little while now. I keep telling myself that it's too late, if I wanted to do this I should have started four years ago but still the compulsion is there.

So there it is, it's made and I suppose I should explain what it is I think I have to write about. I became a wheelchair user four year ago, I started losing my mobility two years before that. Maybe I should have started writing then, but I was too scared. Then I convinced myself that it was too late, no point starting so long after the beginning. The thing about being disabled though, everything keeps changing so there is a constant stream of new normals to adjust to. Every day is a new beginning, so why not start now?