My Mum says that she is not disabled because of her loss of limbs, but in fact by the world around her. It is completely inaccessible. Since my Mum suffered the consequences of septic shock, and lost her legs and fingers, not even her unwavering (and fairly awful) humour, can match the pig-headedness of Southern Rail or the intermittent drop curbs (or not dropped curbs as the case may be) in central London.
We used to go to London on a whim. It was our thing, turning my arduous hospital appointments into a fun day out. My Mum and I still try to keep that tradition alive, but navigating the streets and public transport with a wheelchair in tow is now fraught with challenges.
Even if my Mum was in her 30s with the energy and fitness of someone half her age, it wouldn't change the scenario we found ourselves in on our day out.
Don't get me wrong, there are people on every street corner/train carriage willing lend a hand, or should I say awkwardly manoeuvre my Mum and her wheelchair up or down a curb where I have tried and nearly tipped her out. I wish I was joking, but I can only say I was thankful she was strapped in at points.
Usually, if my Mum and I go out, we go to venues that we know are completely accessible for her, and stay there and then go home. We stick with what we know works. This was a different challenge, about getting from A to B to places we don't usually go to. I did my bit, I booked all the trains, got in touch with Southern Rail to arrange assistance onto the train, planned a very detailed itinerary for the day.
But there were a few things that were simply out of our control:
1. Bikes in the wheelchair part of the train, where they are not supposed to be, which fell on us en route to London. The owner of the bike mumbled an apology just about as he lifted the bike off us. Even the friendly train conductor who had helped us on the train, acknowledged that the bikes should not be there, but didn't do anything about it.
2. Despite the fact that Brighton Station said they would call ahead, and I had in fact arranged it a week before, there was no one at the other end to meet us with a ramp, I had to call out from the train to someone to get some assistance (I didn't want to get off for fear the train would leave with my Mum unable to stop it!). According to Mum this is normal.
3. Walking from the gallery to the bar in Soho, started off well. The streets off Oxford Street in central London have some dropped curbs. But just some doesn't really work. We got half way down the street (lulled into a false sense of security) and found a not- dropped curb. That's just plain useless. I had to hoist and lift my Mum and her wheelchair up and down those steep curbs. There is no point going halfway to make somewhere/something accessible as it will still be inaccessible.
4. On the way home, we were kindly couriered onto a train that mirrored a tin of sardines. Our feeling is that despite the fact my Mum's wheelchair does take up more space than one person and their bag, she has a right to get that train as much as the next person. And while I'm sure those clambering on top of my Mum to get on the train probably think they agree, they clearly don't. She was treated as a second-class citizen while people forced their way on and barged past.
As I sit on yet another jam-packed train, this time without my mother, I wonder how she would have handled the sudden platform change and race to get on that I just had to do. Mostly likely, she would have missed the train. This feels like a metaphor for the bigger issue, are we leaving all those living with disabilities behind at the train station?
We don't see the challenges that people with disabilities face on a daily basis. That's probably because those living with disabilities are automatically excluded from so many spaces. It's tantamount to racism, but it's so subtle that we don't even notice it. I want to live in place that is for everyone. Right now I really don't.