Many things in this world irritate me. At the moment, not just at this moment in time, but in limited life, my biggest irritant is the public perception of my disability and the concessions they do not make for it. Right now*, I know that I am particularly angered by it because I opened the WordPress app to tell you about many things that do not involve how I walked into a hospital waiting area to find no seats free and nobody willing to give up a seat to me.
I am now looking at the many faces in this room having disregarded half of them as poor people whose bodies are riddled with cancer like me and thus are entitled to a seat, imagining the quick deterioration of the days of the rest of them with expensive burst water pipes resulting in days of cold showers, broken favourite dishes, accidentally soiling themselves in front of their colleagues, lost heirlooms and cheating spouses. That is what the healthy visitors deserve for not giving up a seat to a cancer patient with a walking stick. Actually, in my mind, that is the absolute minimum of what they deserve for not giving up their seat.
Perhaps if the room I was in had windows to the outside world, rather than to a white corridor, I would feel more tranquil right now. I would have no desire at all to take people’s legs out with my walking NHS issue walking stick. Of course, if I did give in to that particular impulse, they may then have a genuine need of a seat and that would do me no good at all.
Just an update for you, I am now in a seat. Not because somebody who did not need it gave up their seat, but because I was assertive and stormed towards a seat the minute it became vacated. The next thing I knew, the seat next to me had a new occupant and I had to listen to a gentleman drop several hits about why his wife needed the seat more than me for five minutes. I responded to this by removing my earphones and telling the gentleman and his wife that I too had cancer, and moved my walking stick into plain sight. I then really showed them, by moving to an empty seat when one became available so the gentleman’s healthy wife could sit down next to her husband. Fools.
Fat and young does not make me less worthy of assistance, especially when I accidentally missed last night’s MST dose.
If it is this difficult to get the public to show sympathy or is it empathy, in a cancer centre, how the hell am I expected to survive in public? In the public I see signs for priority seats, but does anybody else? I am not elderly, I do not need a wheelchair and I do not visibly have a part of my body missing. Myeloma can be invisible. Just like, it would seem, as invisible as many people’s manners.
For the first time since my relapse, I found myself on the tube last Saturday Within five minutes, I knew it would be an experience that I would not be repeating for a while. It was an experience where people push and shove and hold onto a seat like it is the their only child. Of the three trains I had to get for a 30 minute journey, none of the stations had stair free access, and only on one of the trains did somebody give up a seat for me. On the first train, I had to contend with somebody who would not move to allow me to disembark, which resulted in my twisting my back and suffering for doing so for the rest of the day. The next day, I got on the 38 bus where somebody had just sat down in one of two free priority seats, before I sat down on the other. The person in question was in her twenties, and audibly tutted as my bum touched the patterned upholstery next to her. She then got up, and moved to another seat behind us with her boyfriend who I did not see behind me. I felt evil. Should I have explained why it was difficult for me to climb up a step to access these seats on a moving vehicle? Should I have to?
I know people manage this type of aggressive travel everyday, but I, to put it simply, cannot do it anymore and I hate everybody who makes it impossible for me to do it. It makes me feel so sick. Sick of this stupid myeloma.
Having an invisible disability is the pits. It is just the pits. Pits. Pits. Pits. I am convinced that a number of people who see me with my walking stick think it is related to my girth and just deserved. I am also convinced that there is a much larger majority, especially in London, who just do not see the stick at all. It all makes stepping outside my front door unpredictable. I have had 26 months to get used to it, but I am still scared by the dangers that lurk behind people not knowing that I have myeloma, let alone the dangers of people not knowing what the dangers of myeloma are (e.g. drunken fool at wedding).
I think I am as strong as I can be. I do not live solely in my flat and I try not to shut myself away, despite home being far safer and more comfortable for me than anywhere else. People, and I do use that term generally, do not see the struggle I face when I leave my flat. I get taxis to make it just that little bit easier, but I am on benefits now, so they have to be limited. Do I give up going out or do I brave the outside?
Travelling and my entitlement to a seat over a healthier person, an entitlement that I am aware some might not agree with, is not the only prejudice I face as a Disabled. I call myself that now. A Disabled; it’s worth it for the cheap cinema tickets. You might have read all of this thinking I just need to be a little bit stronger, a little bit more assertive, have thicker skin and maybe drop a few more Diazapams to chill out before I venture into the outside world. If that is indeed what you do think, I have one more story for you…
Two weeks ago, I found myself walking with my stick at my usual slow pace, alone through Leicester Square. If you are not familiar with said square, it is not the safest place if one needs to avoid crowds and people stopping unexpectedly to take photographs of the M&M store. Anyway, necessity made me go there, and I was managing that, the way I manage most things, by pretending I was not scared of it. As I made my way from one end of the square to another, I walked past a badly dressed, but seemingly popular street performer. As I walked past him, he interrupted his performance to draw attention to me, and said into his microphone, “see that woman, she’s faking, she does not need that walking stick”. The crowd laughed and I felt humiliated. My humiliation resulted in cowardice and I just continued walking pretending that I did not hear what he said, nor the laughter of the crowd. Two days later he and I were there again, but this time, instead of taking the shortcut by him, me and my walking stick took a long detour, to save any more potential embarrassment. I was a chicken.
Since the incident, I have obviously rehearsed what I should have said to the man on that day. I should have explained why I had a walking stick and explain all the reasons why I was not faking. I could have just lifted up my shirt to reveal my radiotherapy scar. Of course, the opportunity has long gone, and boy oh boy does that make me angry or so very angry. On a very personal level I am punishing myself for my cowardice. I fight something very difficult everyday and I could not stand up to a bully who makes his money in an upside down hat.
More broadly, what does it say about people that the man thought it was okay to say what he said and the crowd of people thought it was acceptable to laugh at me? I suppose it says much the same thing as people who sit in a Priority Seat when they do not need to, and the same as people occupying seats in a cancer centre and not giving them up to somebody who has cancer. I just do not quite know what that is.
I will finish with this thought… The priority of My Myeloma should be my treatment, but more and more with this relapse, I am finding so many other things that cause more unnecessary stress and anxiety. They are things that not unlike treatment are out of my control, but could be remedied if People (that general term again) were more aware of our rights. If People did not want to give their time to consider our rights, then the least they could do is show some manners, or on a more basic level, know right from wrong.
P.S. My newfound concerned for the rights of disabled people, is in no way, selfish. Mamma Jones just installed me with manners, that is all. I’m speaking out to all 46 of you for the benefit of others.
* To be clear, the ‘right now’ in question was yesterday… I got a wee bit side tracked with medical information, being impressed with the installation of my cannula, getting a dose of Zometa, getting a train (which highlighted the issues raised in this blog) and going to a seven year old’s swimming lesson.