I am pretty sure that weddings count as normal social occasions, and the one I attended at the weekend seemed such. Yet for me it was not normal. Friday I knew that I was going to struggle, as a stress fracture in my foot was causing me a lot of pain. Also, due tot he fracture, a slight over-reliance on my other foot over previous days was giving me trouble too. Both my feet are painful and afflicted by various problems. Only this was one of the times when it was just worse. Both were injured and both were agonising.
Waking up early Saturday morning I pretty much couldn't walk. By this I mean that the pain meant that I could barely put my feet to the floor. Actual movement was next to impossible. Yet I had a wedding to attend. I am extremely fond of the bride (yet another of my favourite women mystifyingly marrying someone who isn't me) and did not want to miss her special day.
I climbed in the car and set off for the 300 mile drive from where I live to the venue in Scotland. Upon arrival I decided that I would simply try and do what I always do, which is to make it through and just ignore the pain. I tried. I really did, but ended up leaving before the wedding breakfast and driving the 300 miles home.
When I made the decision to leave I made light of it. I wrote the history thus:
"It's fine. I'm just having one of those bad days. I'm oh-so glad that I came. It was a lovely wedding. I'm ever so sorry I can't stay longer..."
As well as the fact that we disabled people tend to live on little enough money that even one night in a very well appointed country hotel is just another unpayable debt; so staying late and therefore staying over was out of the question, it wasn't really fine.
Yes, I was having a particularly bad day: in more pain than usual and less able to ignore it. But this normal social occasion was simply out of my reach. It started with standing around in the bar chatting. What can you do but sit down, and therefore be under the conversation of the other adults and too immobile to to join in with the kids?
After the ceremony, which was delightful, there were the photographs. Two steep flights of stairs were easier than walking a hundred yards to a lift, so I negotiated them. The photographic set up was in the middle of a lawn, accessible by some more steps or a steep grassy bank. Everyone wandered onto the lawn, accepting canapes and drinks from the mingling waiters. I stood, leaning against a low window sill, and watched the guests head across the grass to where the photographer wanted them. I then watched the waiters go by, taking the canapes and drinks to the assembled revellers. They walked by me far enough away that I wasn't in their focus, but too far away for me to hail them without shouting. The photographer walked past me and went back up the steps to a balcony, where he ran through his little script, gathering the guests in groups for their photos. Then he moved people to the other side of the lawn where more groups were photographed on the steps of a summer house.
The waiters took more drinks out onto the lawn. Clearly the photographs were finished but the guests were encouraged to mingle on the grass for almost another hour. After about 10 minutes I headed inside. The party was happening 100 yards from me and I had nowhere to sit down. I shuffled my way to the lift (ironically there were stairs to get to it) and went back upstairs. I decided to wait in the dining room. So I found my place and sat down to wait. After a minute or two a nice hotel staff member informed me that the dining room wasn't yet prepared and would I mind moving next door to the ballroom? So I stood up again and walked to the ballroom to wait. About another half an hour elapsed before the other guests were ushered back indoors. As they arrived, someone started up some music and an emcee began to instruct how everyone to dance a traditional reel. This was a prelude to the post meal entertainment - which was to be a Ceilidh.
It was at this moment that I decided to leave. The flow of social activities for the day involved nothing I was physically capable of joining in with. Nothing that did not, or would not, cause me more pain. The steps and getting to the lift had increased the level to about an eight and a half out of ten. The endorphins were kicking in and I had no appetite.
What actually happened was that I borrowed someone's room key and went to lie down. I knew it wasn't going to work, in terms of getting me physically back in the game, but I didn't want anyone to think I had left impolitely, without appearing to try. I really didn't want there to be a fuss. I have been to enough weddings where some guests try and make the day about themselves rather than the marrying couple and I think it selfish and appalling. I also absolve the bride or groom. Neither was in any way responsible for my position. They had to be attentive to everyone there, and neither of them is my personal assistant, advocate or Mother. I stayed in the room for two hours or more, until the meal and speeches were over.
The fact is that the history I wrote when I left was mostly false. The service was pleasant, but every other part of the day was nightmarish for me. I am used to being in pain. That's just a regular thing. But the real reason I left was the absolute feeling of exclusion. There was this party happening and every part of it was predicated on being able bodied. Going up and downstairs, mingling on the lawn, dancing a reel, being turfed out of my seat for not being like the other guests, even getting to a room (had I booked one). I was, by necessity, abandoned on the sidelines. I ended up with my nose pressed against the window, watching life happen inside. I may as well have just not been there. And as far as records show, I wasn't. The photographer simply hadn't thought to change his routine so I could be included, so I was just left out. The world of this normal social occasion could not handle someone abnormal, so I was ignored.
It was only luck that meant as I was leaving he was too. I grabbed him and insisted he took a photo of me with the happy couple. Had our paths not intersected, then I would have been excised as well as excluded, like some disgraced Soviet general being airbrushed, or a mad cousin hidden in an asylum so as not to bring shame on the family.
Waking up early Saturday morning I pretty much couldn't walk. By this I mean that the pain meant that I could barely put my feet to the floor. Actual movement was next to impossible. Yet I had a wedding to attend. I am extremely fond of the bride (yet another of my favourite women mystifyingly marrying someone who isn't me) and did not want to miss her special day.
I climbed in the car and set off for the 300 mile drive from where I live to the venue in Scotland. Upon arrival I decided that I would simply try and do what I always do, which is to make it through and just ignore the pain. I tried. I really did, but ended up leaving before the wedding breakfast and driving the 300 miles home.
When I made the decision to leave I made light of it. I wrote the history thus:
"It's fine. I'm just having one of those bad days. I'm oh-so glad that I came. It was a lovely wedding. I'm ever so sorry I can't stay longer..."
As well as the fact that we disabled people tend to live on little enough money that even one night in a very well appointed country hotel is just another unpayable debt; so staying late and therefore staying over was out of the question, it wasn't really fine.
Yes, I was having a particularly bad day: in more pain than usual and less able to ignore it. But this normal social occasion was simply out of my reach. It started with standing around in the bar chatting. What can you do but sit down, and therefore be under the conversation of the other adults and too immobile to to join in with the kids?
After the ceremony, which was delightful, there were the photographs. Two steep flights of stairs were easier than walking a hundred yards to a lift, so I negotiated them. The photographic set up was in the middle of a lawn, accessible by some more steps or a steep grassy bank. Everyone wandered onto the lawn, accepting canapes and drinks from the mingling waiters. I stood, leaning against a low window sill, and watched the guests head across the grass to where the photographer wanted them. I then watched the waiters go by, taking the canapes and drinks to the assembled revellers. They walked by me far enough away that I wasn't in their focus, but too far away for me to hail them without shouting. The photographer walked past me and went back up the steps to a balcony, where he ran through his little script, gathering the guests in groups for their photos. Then he moved people to the other side of the lawn where more groups were photographed on the steps of a summer house.
The waiters took more drinks out onto the lawn. Clearly the photographs were finished but the guests were encouraged to mingle on the grass for almost another hour. After about 10 minutes I headed inside. The party was happening 100 yards from me and I had nowhere to sit down. I shuffled my way to the lift (ironically there were stairs to get to it) and went back upstairs. I decided to wait in the dining room. So I found my place and sat down to wait. After a minute or two a nice hotel staff member informed me that the dining room wasn't yet prepared and would I mind moving next door to the ballroom? So I stood up again and walked to the ballroom to wait. About another half an hour elapsed before the other guests were ushered back indoors. As they arrived, someone started up some music and an emcee began to instruct how everyone to dance a traditional reel. This was a prelude to the post meal entertainment - which was to be a Ceilidh.
It was at this moment that I decided to leave. The flow of social activities for the day involved nothing I was physically capable of joining in with. Nothing that did not, or would not, cause me more pain. The steps and getting to the lift had increased the level to about an eight and a half out of ten. The endorphins were kicking in and I had no appetite.
What actually happened was that I borrowed someone's room key and went to lie down. I knew it wasn't going to work, in terms of getting me physically back in the game, but I didn't want anyone to think I had left impolitely, without appearing to try. I really didn't want there to be a fuss. I have been to enough weddings where some guests try and make the day about themselves rather than the marrying couple and I think it selfish and appalling. I also absolve the bride or groom. Neither was in any way responsible for my position. They had to be attentive to everyone there, and neither of them is my personal assistant, advocate or Mother. I stayed in the room for two hours or more, until the meal and speeches were over.
The fact is that the history I wrote when I left was mostly false. The service was pleasant, but every other part of the day was nightmarish for me. I am used to being in pain. That's just a regular thing. But the real reason I left was the absolute feeling of exclusion. There was this party happening and every part of it was predicated on being able bodied. Going up and downstairs, mingling on the lawn, dancing a reel, being turfed out of my seat for not being like the other guests, even getting to a room (had I booked one). I was, by necessity, abandoned on the sidelines. I ended up with my nose pressed against the window, watching life happen inside. I may as well have just not been there. And as far as records show, I wasn't. The photographer simply hadn't thought to change his routine so I could be included, so I was just left out. The world of this normal social occasion could not handle someone abnormal, so I was ignored.
It was only luck that meant as I was leaving he was too. I grabbed him and insisted he took a photo of me with the happy couple. Had our paths not intersected, then I would have been excised as well as excluded, like some disgraced Soviet general being airbrushed, or a mad cousin hidden in an asylum so as not to bring shame on the family.
Hi Gavin,
ReplyDeleteReading your experience of the wedding I had to add my tuppence about the plight of anyone trying to whield a pushchair on the rail system.
Friday I took Flo to visit a Down's parent support group in Islington and then on to a nutrition clinic. At Letchworth we managed down the steep flight of stairs by the sheer luck of bumping into a friend who helped schlep the pushchair down and onto the train. Of course I had to stand in the train with the pushchair or Flo wouldn't have been able to see me. At Stevenage a man in a wheelchair who also had to sit in the entry area manouevered himself around us so we could get out the right side. Even then the front wheels of the pushchair got caught just under the step and some horrified person who obviously thought I shouldn't be allowed a supervisory role with a child rushed forwards to tell me that was very dangerous. A nice American lady in a suit then came forward and offered to help me down one of the flights of steps. Unfortunately there was another to go which I carried the chair down myself. While this was going on I realised I had no hope of asking directions and getting back to another platform for the train to Drayton Park so I decided to walk to Holloway Road from there. So far so good. I returned to Finsbury park later thinking at least it was big and I'd attract help on the way in. No such luck, as I was grunting and heaving the pushchair back up the second set of steps a woman actually stopped me to ask for advice about her season ticket. She didn't consider offering to help. At the top of the platform a guard told me I was in the wrong place and would have to go down and up again. I asked if someone could in that case help me get the pushchair up and down or show me to a secret lift. The guard looked disgusted and went back to a staff room to see if there were any volunteers, which thank god, eventually there was. Once safely on the platform I waited for the train again and this time while I was in the process of heaving the pushchair through the door an entire family took the opportunity to use us as a doorstop and skip in over Florence! Back in civilization (Letchworth) we walked the the bottom of the big flight of steps with about 60 people and when I finally clanked the pushchair onto the first step a man came and offered to help. But oh dear, how completely helpless we were, even doing the journey without any changes and using big stations. Don't Londoners have kids? Are wheelchair users not supposed to use trains at all? As I walked over the rail bridge, past the lift that has been out of action for the past 12 years I felt I deserved a bit of a refund.
The story dosen't compete with yours of physical pain but the sense of exclusion was definitely there.
Lots of love. Hope you are getting better now.
Sande X