Pages

Wednesday, 28 June 2023

The burden of disability

This post is a little different from my usual ones, and is a cross-over between HSP and my work.

As part of the staff network for people with disabilities and health conditions, I had the opportunity to visit Heathrow with a few colleagues and experience some of Heathrow's accessibility issues. We were invited to take part in an exercise where each of my colleagues were kitted out with props/tools to simulate a disability or health condition. We were split into groups and set various tasks around the airport.

The tasks were basically to give each person a chance to experience something approaching how people with disabilities experience navigating around airports. Each group was accompanied by someone from Heathrow who was observing what happened to us, both from a safety point of view, and from a note-taking point of view. The group I was in were set various navigation tasks, getting from one place to another, including getting through security.

The tools/props that were used included: a sling, to simulate a broken arm, a pair of gloves to simulate arthritis, foot and neck weights and a knee brace to simulate joint movement difficulties, various glasses to simulate cataracts and other vision impairments, and some earphones playing different sounds to simulate neurodiversity. I went with my AFO and my walking poles being my usual HSP self.

This was the first time that I'd worn/used these in a work context, and I was also seeing if any of my colleagues treated me differently with my aids 'on show'. They didnt, which was good, although one colleague did ask if I wore my AFO all the time whilst I was out of the room.

Going round the airport was a good experience for me. There were no problems getting through security, although my AFO (and shoe) had to through the scanner separately, which was all done very well. I dont usually use my poles, so they were no problem going through the scanner either. I had good conversations with the other people I was going round the airport with. We came unstuck once. Our challenge was to get to one of the gates which the sign said was a 15 minute walk away. We decided to try and get a ride there by visiting the accessibility point, but as we didnt have boarding passes we couldnt access that. There appeared to be quite a few people waiting for that service, so I think that this would have taken quite some time if we had managed to use it.

Once we got back to the Heathrow offices, all of my colleagues who had been using the tools/props said that they had found the experience exhausting. It didnt matter which of the tools/props they had been using, they all had found it hard work. This emphasises for me quite clearly the extra mental and physical burden that disabilities and health conditions can have on mobility.

I realise, of course, that if you've lived with something for a while you get used to it, and that probably makes the impact smaller than if you're immersed fully into the experience for the first time - your brain has done all the learning, and your body is used to the physical differences. I can also see that different conditions, which affect different parts of the body have very different consequences. My colleagues wanted to be able to get round the airport independently, and I think the realisation that this isnt as easy as you might think is a huge learning piece.

I also realise that by comparison my experience was a "walk in the park" - using a potentially able-ist phrase! I was just going about as I normally would. My walking speed is lower, and that meant that I was the person setting the pace around the airport. Having my walking poles out made that feel less unusual, because the poles are a visual cue to others that walking is a problem. Otherwise, there wasnt really any difficulty for me. I realise that actually, my mobility changes do have an effect on me, and I know that it does take me more effort to move and do things than it used to. The challenge with a slowly progressive condition is that its hard to see the change.

I'm not sure when I'll start to use the AFO and poles more often. It might be the poles which come out sooner than the AFO, just for the visual conformation that I'm moving differently from everyone else. I dont yet need them for balance, which is a possible future symptom. I am convinced that the AFO doesnt do much for me, and I put that down to regularly doing my stretches and keeping my flexibility in my leg. I could do an experiment next time I get a new pair of shoes to see if the wear on each were different, but thats an experiment of several months, which I dont feel I have the time for at the moment!

  

Saturday, 17 June 2023

Reflections on dating apps

Here are a few thoughts on my initial encounters on dating apps.

When I first set my profile up I didnt mention HSP or any of its effects directly, although I did mention that I am the chair of a rare disease charity. A few on-line conversations led to meeting up for a 'real' date. After those dates, however, two things happened - I was either ghosted, or the on-line conversations dried up pretty quickly.

Without any supporting evidence, I cannot tell if any of that is to do with my HSP and my 'funny' walk, or if there were some other reason for things not going any further with most of these people.

The conversation I had with the first person I met up with was interesting. They said that I ought to consider being more explicit about things on my profile. This gives people a chance to make up their minds without me having to make such an emotional investment - i.e. there isn't any benefit to me in getting involved with anyone who is going to walk away awkwardly at the first signs of anything unusual.

It took a few months for this thought, and conversations with other people to result in me updating my profile. I chose to make two changes. In one change I went self-deprecating, and declared my walk to be like my sense of humour - both 'a bit funny'. In the other change I chose to reveal my vulnerabilities, by saying that I'm nervous about becoming a disabled person of the future.

This change was good. Conversations have been better, and have not dried up after a first real date. I feel like I'm more able to be myself, and this reminds me that my HSP is only a relatively small part of me (even if it feels like it takes over my life from time to time).

(Readers may not know what ghosting is - it is abruptly ending communication with someone without explanation - Wikipedia says: https://en.wikipedia.org/wiki/Ghosting_(behavior))