Commonwealth Games Visit by Wheelchair User Spoilt

My Dad and I visited Birmingham twice this week to attend the Commonwealth Games. We went to the badminton and then returned a few days later for the artistic gymnastics. I’ve shared about both of those on my insta but will return at some point to write the blog entry those events deserve.

Sadly I experienced discrimination and ableism during my visit to the gymnastics. And in a way that I never had before (which having been disabled since birth is saying something).

West England Bylines gave me an opportunity to write an article for them about it: Commonwealth Games Visit by Wheelchair User Spoilt.

I’d appreciate it if you could read and share.

You Get Proud By Practicing

This month is Disability Pride Month. I have many things I would like to write about disability pride and why it matters to me and what it means to me. But first I want to share something else.

The thing about being disabled however is that society isn’t set up for us as well as it could be. And people often don’t understand that disability isn’t always a tragedy or reason for pity.

Being proud is sometimes difficult for those reasons. And I recently experienced a few things (I’m not in a position where it’s appropriate for me to share details at the moment) that has made it particularly hard to be proud of my disability lately.

I suddenly remembered a line I’d read years ago in a poem “you get proud by practicing” and when I googled it I remembered how much I loved that poem (written by disabled activist Laura Hershey) back when I first heard of it.

I won’t share the whole poem but I will tell you that I’ve read it several times since that day when I refound it. And I keep reminding myself that

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.

The poem You Get Proud By Practicing by Laura Hershey is well worth reading in it’s entirety and can be read here

Burn out

I’ve made a couple of attempts over the last few days at writing a blog post about the nuances of accessibility. And I still might do that at some point but at the moment I can’t make my thoughts on the matter into a coherent post.

Part of the problem, is that I’m a 40 year old life long disabled person. I’ve spent my entire life making do, fighting for accessibility and being the first to do whatever. Admittedly I have seen huge improvements in accessibility in my lifetime but there is still much to do. And I’m tired of it.

I suppose (having taken a break in writing this to think about it) that post about nuances probably was a struggle because there’s a nuance I wasn’t including. The energy it takes to fight for accessibility, the choices I make to fight this one but let that one go (and how I choose). And the energy those around me take up when they get angry on my behalf without understanding, try to find solutions when I’ve already considered them and/or tell me that it’s not right, it should be accessible and I shouldn’t let my disability stop me.

I’m really fucking exhausted of all of it. Burnt out really. But there’s not many people I can tell that too.

In which I want to update…

Updating my blog has been on my to do list for weeks and I actually started to write a post a few days ago. But that turned into a whinge about the reasons I’ve currently lost my love for blogging so I left it in unfinished in drafts and then deleted it this morning.

I mean this blog is for the highs and lows and it is the place to talk about how I currently feel about sharing my life online. And more about how I feel the current ecosystem of the internet is shaping that. But I don’t feel it’s the post for right now, particularly as it seems a lot of my later posts are (or could be taken as) somewhat negative.

For the last couple of months I’ve been at cornerstone writing once a week or so with various people from my writers group. Most weeks I’ve been taking my notebook and working on some journalling.

Basically writing a stream of consciousness about whatever comes to mind. It’s very useful to help work out what I’m thinking about or clear my mind of worries/concerns. It’s very interesting how I’ll start writing about one thing and over the space of twenty minutes or two pages it’ll meander through two or three subjects to end up somewhere completely different.

But today instead of viewing writing as a process and a thing to do, it’s more about writing for a product. It’s time to do something about this blog so I’ve brought my tablet with me and I’m writing this.

The reality is I started what we now call blogging back in November 2000 for a bit of fun. It was all anyone ever expected back in the days when we called them online diaries and the Internet was new and nobody had any idea how big and integrated with our lives it would become. Now everything is all about the so-called side hustle and making money. Meaning it no longer feels acceptable to just do something for the love of it.

I still get a lot from blogging and I still enjoy going back a few years and reading old entries, being reminded of what I forgot (I regret that much of my earliest years of blogging is lost but at the same time I cringe the first few entries which I do have copies of).

I think I need to rediscover blogging for me. Not for the deals, freebies, money and hundreds of followers society would say I need. But because I enjoy it and get stuff from it.

Here’s to a new beginning!

Normal-ish

Life is feeling quite like it’s back to what we considered normal pre-covid. Which is lovely.

But at the same time, several members of my family had covid a couple of weeks ago, masks are still a thing and I had to do a LFT before going out on Fri because I was all sneezy and snotty with probable hayfever but add in being tired and achy (not unusual for me) and it needed checking.

So it’s looking more normal but it’s also not. And add in other people having different boundaries for normal and it gets a bit weird.

But in the last six weeks this new normal has seen:

Meeting up with the writers in person again for the first time in months.

A pub lunch

Two trips to Birmingham to meet up with Rachel. We went to the theatre both times and saw Beauty and The Beast the first time, Joseph the second. I liked both but Joseph was amazing, it had been changed a lot since I last saw it.

A weekend away! Tied into the trip to see Joseph I spent two nights in a Premier Inn. It was so nice to sleep in a bed that wasn’t my own. As well as the show I went to an exhibition (Birmingham City of Empire to City of Diversity) and had a wander round the shops. And drank wine and read my book in the hotel bar. The Sunday I came home early ish because once I was back we were going to…

A show at Cornerstone. I, Elizabeth. A one woman show telling the story of Elizabeth I. Very interesting and thought provoking.

Coffee with a friend.

Afternoon tea with the fam for Mothers Day and a BBQ with the fam on Easter Sunday. Both a lot of

A trip to Reading to buy summer clothes.

Breakfast with Mum and then a visit to Waterstones. I had given her a gift voucher and a list of suggested books for Mothers Day so we went to look at those. But I also bought five books.

It’s not really any wonder I’m exhausted and stiff and my lymphoedema has flared up is it?!

No, no but it’s not funny at the end of the day is it? It’s serious

A couple of weeks ago my TikTok for you page was full of videos using a sound where there’s a room full of laughter. And then someone says “no, no but it’s not funny at the end of the day is it? It’s serious.” I’ve been thinking about that a lot lately.

About ten days ago I had a bad experience with something disability related. The internet would have you believe that this bad experience is something that happens regularly. And I could easily believe that at least one disabled person in the UK will experience that everyday (I have no figures to back that up).

Personally I’ve experienced that before but not for many years. In the past I’ve ended up in a dangerous situation more than once because of it. I’ve had sobbing panic attacks before because of it. It’s only due to a quirk of when it happened that it ended up just being very stressful and worrying this time. That and the kindness of a couple of strangers.

I could write about what happened. I could tell you about the strangers running around trying to find help. The other people who were around who didn’t realise there was a problem. The joking comment one of the other staff made to the staff member who came to my rescue when it was all over.

But every single person I’ve told this story to has laughed. Apparently the way I tell it is funny.

And that’s infuriating. Because it was a stressful, upsetting and potentially dangerous situation. A situation I regularly have to risk finding myself in again.

You Know You’ve Got CP When…

…it takes more than 10 years to find a way of you accessing wheelchair accessible scales.

… four months to get an appt after you hear about the service and start trying to get referred (which only took about three weeks)

…and less than 15 minutes for them to set up the scales, weigh you, weigh your wheelchair without you in it and pack up again.

After all that time and fight and failed attempts, it was a little bit of an anticlimax!

Bingo!

When a new carer joins the agency part of their training is shadowing an existing carer to see the sort of things they will have to do. Not necessarily the people they will be supporting but whoever the carer they are working with is. I recently had someone come shadow.

I find that whenever I get a new carer (shadow or actual carer) we have a lot of the same things happen. And after the call ended and my carer and the shadow left I was quite frustrated by the experience. But also half amused because this shadow had basically ticketed off several of my “new carer cliches” a bit like a bingo game.

Knew nothing about me and assumed I need more help than I do ✅

Shocked by how independent I am ✅

Commented on how big my flat is ✅

Offered to make me a cup of tea ✅

The same person is coming back to shadow later this week. Judging by what I’ve got left on my bingo card we’ll be talking about whether I’m close to my family, do they live nearby and how long have I lived in my flat. Depending on whether or not she’s seen my care plan* by then there’s also the optional “what did you do at uni?” square to fill.

*care plans contain a little bit about your history so the carer has something to chat to you about. Mine says I grew up in East Hagbourne and went to university in Stoke on Trent. It also includes that I volunteer for Citizens Advice and due to covid haven’t been able to do as much with my friends as I would like/have previously.

How are you changing the world? #Bloganuary

Today’s Bloganuary prompt is “How are you changing the world”

This isn’t an easy prompt for me.

Throughout my life I’ve been the first wheelchair user to do a’levels at the college I went to at 16. The “only disabled person” we’ve had do whatever. Or the second. It’s not been an easy place to be as being the first or even the second hasn’t been an easy journey. It’s been full of mistakes and difficulties and fighting. I wrote a post about that on instagram a few years ago; it’s still true now.

I’m not comfortable with claiming that “making things better for the wheelchair users who come next…” as me changing the world as they never felt like real, last changes and in many ways it’s been pretty fucking damaging to me.

I am more comfortable with the idea that some of my work may have improved the world for some people; made their lives better.

I will begrudgingly claim the fact that one of the organisations I occasionally volunteer for added an extra disabled toilet as my playing a role in making the world better for their disabled volunteers. But that wasn’t so much something I set out to do. I just kept turning up for several years and asking staff to escort me to the loo as you needed a building ID to get in the area it was (There were regular toilets in the area we volunteered so everyone else just went). Which eventually made staff start to talk about needing a solution.

I’ve had a carer tell me on her last shift with me that my encouragement as she cared for me had made her much better at her job. I’d like to think that’s true and maybe it’s helped other people she’s cared for. But I felt like a bitch when she told me. Because I encouraged her because I needed her to be more confident in what she was doing for me, to make the care she gave me what I needed. And not because I was a nice person.

I hope that the disability benefit appeals I’ve helped Citizens Advice clients with has changed the lives of those who were successful. Or at least that the extra money has made me things easier for me.

And in a smaller way, I hope seeing me and hearing me say “I get it, I hear you.” has helped all the various other people in my life (friends, family, other volunteers, clients.) at times.

A dream I remember

This was the Bloganuary prompt for 24th January.

I used to have a semi regular dream. It would never be identical but the same thing would be happening. I had it, probably several times a year, for as long as I can remember.

The dream would be that I’d be somewhere, doing something. That varied in each of the dreams. But I’d always be walking around doing whatever it was.

Then suddenly in the dream, I’d remember that I can’t walk. I’d them usually spend the rest of the dream crawling around in a panic looking for one wheelchair. Apart from once when I kept walking (I think this might have been when I was still a bit functional on my feet in the real world) but spent the rest of the dream in a panic that I’d fall before I either found my wheelchair or got where I was going as I knew I’d not get up if I did.

A few years ago I was talking to a friend and told her about the dream. She said “that’s a classic anxiety dream.” And I’ve never had that dream since.