It’s not what you say

As a wheelchair user there are certain comments, questions, and even jokes about my disability and/or being a wheelchair user that I hear often.  And that’s sort of OK.  I’m used to it and over being bothered by them in most cases.

People (strangers) will ask why I’m in a wheelchair, have I been disabled long, that sort of thing.  Sometimes I answer, sometimes I ask why they want to know.  That usually depends on whether they take me by surprise or not and how feisty and argumentative I’m feeling. And answers to my replying “Why do you want to know?” tend to be interesting too.

But this week I’ve been thinking a lot about how the thing that makes so much of what’s said to me inappropriate isn’t what was said but how and what was said and also when it was said.

Someone I’d just met noticed I have a problem with my feet – which it’s true I have a very noticable problem with my feet and the fact the loan powerchair footplates are in a weird position is probably making it more noticeable.  The comment they made was “that’s a very interesting problem you’ve got with your feet.”  It made me really annoyed.  Now, had that been phrased as a question like “Do you mind if I ask what’s wrong with your feet?” or “my so and so relative has lymphodema is that what you’ve got?” (it is) I would have found it more acceptable.  My condition being described as interesting was not. It’s a judgement and a hint of entertainment (in reality I suspect it was made from a place where the other person was uncomfortable with the situation and trying to make small talk)

And then on another day this week I heard someone else make a comment in a different situation. One I hear variants of all the time.  It’s a jokey one but it’s old and it’s no longer funny (not that it really was in the first place…).

It’s not a comment that’s meant to be ableist but it ends up being so because as a friend pointed out yesterday an able-bodied person would never hear it made to them.

It’s the suggestion (made usually as I reverse my powerchair) that I need to get one of those things that beeps as lorries reverse installed on my chair.

I usually just want to roll my eyes and suggest that said suggestion is a bad idea.  Would they like to be sharing a hotel room with me at two in the morning when I need to get up for a wee and my chair has a reverseing beep? Strangely they always say no.

I’m deliberately not mentioning where I was.  But what I will say was a it was a long, difficult and upsetting day.  And the person who made that comment (complete with actual beep! beep! beep!ing for the first time ever) was there in an official professional capacity and knew that is a situation which everyone finds upsetting.

It really wasn’t the time or place for any form of joke.  It even more so wasn’t the time or place for a disability joke and as I said to another friend I can’t decided if it’s horrific that it happened or if it’s so hideously inappropriate and not funny that it’s become a little bit funny.

A lot of the time I can deal with the comments that people make.  But it would be a lot easier if they realised that they so rarely are new or funny and there really is a time and a place for them.




Last Dance in Havana by Rosanna Ley

I received a free copy of Last Dance in Havana by Rosanna Ley as part of  Quercus Summer.

Cuba, 1958. Elisa is only sixteen years old when she meets Duardo and she knows he’s the love of her life from the moment they first dance the rumba together in downtown Havana. But Duardo is a rebel, determined to fight in Castro’s army, and Elisa is forced to leave behind her homeland and rebuild her life in distant England. But how can she stop longing for the warmth of Havana, when the music of the rumba still calls to her?

England, 2012. Grace has a troubled relationship with her father, whom she blames for her beloved mother’s untimely death. And this year more than ever she could do with a shoulderto cry on – Grace’s career is in flux, she isn’t sure she wants the baby her husband is so desperate to have and, worst of all, she’s begun to develop feelings for their best friend Theo. Theo is a Cuban born magician but even he can’t make Grace’s problems disappear. Is the passion Grace feels for Theo enough to risk her family’s happiness?

From bestselling author Rosanna Ley comes an exotic tale of love, family and friendship set between England and Cuba.

You know when you read a book by a new to you author and you immediately start wondering why you’ve not picked up any of their other books?  Last Dance in Havana was like that for me.  I’ll definitely be picking up some of Rosanna Ley’s earlier books next time I get to a bookshop.

I really enjoyed this book. It was summery and fun and the perfect way to while away a sadly rare hot sunny evening in the garden. I lost track of time reading this and could almost have been in Cuba rather than my weed infested South Oxforshire garden. It definitely made me long to visit Cuba, somewhere I’ve never considered visiting before.

When I review books I don’t often mention who my favourite character in case it’s a spoiler but I usually try and decide that when I’m reading.  I really couldn’t decide if I preferred Grace or Elisa here.  Both strong women with struggles that made them seem real and relatable.

Over the last few weeks I’ve read a couple of beach read chicklit type books.  They’ve been OK.  I’ve liked them but the best I could say real was they were nice.  Last Dance In Havana was the first in a long while I can say I really liked.


As I wrote a few days ago, I’m getting a new powerchair.  I was very upset when I first discovered I needed a new one but then I made a conscious decision to see that as a good thing.

I’m getting a bit sick of telling people this story but it’s important background to something else I want to write so I’ll share it here.

The last Bank Holiday weekend my footplate on the powerchair broke.  For as much as I’m always breaking the damn things on the manual chair (see also: “designed to break” and file it under bullshit excuses) I’ve never broken one on the powerchair.  I don’t think I’ve ever broken a footplate on any of my powerchairs.  I had what I thought was a minor knock on a door frame (90 degree turn and tight door) and although I originally thought nothing had broken it seems I was wrong.

It was beyond frustrating because the actual chair was working fine it just wasn’t safe for me to use with only one footplate.  I spoke to the tech and emailed him some photos of what had happened when they reopened on the Tuesday and he came round on the Friday with the bits he thought were needed to fix my chair.

And then when he went over my chair he pointed out that one of the front castors wasn’t on the ground properly (I hadn’t noticed we think because my weight in the chair was forcing it down).  He was concerned that there was something seriously wrong and the wheel could fall off at some point.

So I cried and he took it back to the workshop and stripped it down. At which point he called me to tell me the entire chassis was bent.  The chassis is a bit of a known weak point on the Salsa M and it’s the second time I’ve needed it replaced (it cracked about a year and a half after I got the chair and was replaced under warranty).

I’ve got insurance on my powerchair which covers accidental damage so I made a claim and the tech sent a quote. I started getting very antsy at this point because all of a sudden there was no end in sight.  It didn’t help that the insurer had told me they could usually make a decision same day and the quote went in Friday afternoon and I didn’t hear back until Tuesday midmorning.

And the decision was that the chair was worth less than it was going to cost to repair it so it was a write off. Oh and by the way, the new for old clause in the policy? Doesn’t apply because of how old the chair is (it has an estimated life of 5 years and I’ve had it 4 and a bit).

So I suddenly needed a whole new chair and my ability to cope was rapidly going out of the window because I had no idea when I’d be mobile again or anything (in reality the tech bought me a loan chair the next day although I wasn’t able to use it properly until they replaced the batteries a week after due to a spectacular trip to town via taxi where I wheeled a not very long distance and dropped a third of a charge and then couldn’t find a taxi home).

Here’s the thing:

I’m very very fiercely independent.  I go here, there and everywhere and do everything I can without help.  I go to the supermarket and do all my own shopping (occasional online shops for heavy stuff every few months and small shops on my way home from CAB a couple of times a week). I go out and see friends and I go off for days out and trips away.  And I do it because I’ve got a powerchair.

My ability to wheel my manual is too little and wheelchair accessible taxis are too rare (there is one taxi company who has two in Didcot and last time I checked there are none in any other place in South Oxfordshire) and too expensive for me to be able to go out when I don’t have my powerchair.  I basically didn’t leave the house for nearly three weeks.

So suddenly I had to get all of my shopping online. Which is fine. But then you have the times when all I needed was a loaf of bread or another packet of sandwich stuff. Not enough to do an online shop and not something I’d think twice about popping out for a bit to grab if I had the powerchair. Only it was something I couldn’t do any more and finding someone who would go and do that isn’t always easy. And my prescription? Well I get it sent to a pharmacy I pass all the time. Only someone else had to pick it up and would probably have found one of the supermarkets easier to get it from.  That letter that needs posting? Not going to happen.

I wasn’t really seeing anyone because I wasn’t getting out.  And all of my independence had gone.  Because as independent and out there as I am, it’s all sort of fake.  It works as long as I have the equipment I need to make it possible.  And the minute my powerchair went, that did too.

I’m enjoying having the loan chair (although I’m not a fan of the actual set up it’s got) and being independent again.  But I don’t think I’ll feel calm and confident again until I get a set of wheels that’s actually my own.

Especially given the fact that I managed to accidentally disconnect the control on it today and for thirty terrifying and heart stopping seconds I thought I’d properly broken it and was going to be stranded again.

Any Colour You Want (As Long As It’s Black)

I am, unexpectedly, getting a new powerchair.  The reasons behind that are long and irritating and frankly I’ll get to them in another entry tomorrow.

One of the really good things about getting a new powerchair is something I think some people outside of my immediate family are having trouble understanding.

I got to choose the colour.  I’m excited about that.  My Quickie Salsa M (most recent powerchair) was red with silver swing away footplates because that was the only colour it’s available in. It’s a nice red but I wouldn’t have chosen it.  My Jazzy 1121 (powerchair before that) was technically second hand so I got the green the original owner had chosen (it had, perhaps, been used 5 times by the original owner).  It was a dark green and there wasn’t a huge amount of it so it was OK.

Here’s the thing: if I get to choose a colour for a wheelchair I pretty much always choose the same one. Black.

As a teenager I went to wheelchair services and they said “this is a new wheelchair on the market and it’s only going to be available in black” and I said “well, that’s the colour I’d choose anyway.”  We went back several weeks later to have it fitted and the manufacturer had decided it would be available in a range of colours. As wheelchair services hadn’t specified a colour they’d sent blue. A hideous, bright, horrible blue.  It didn’t help that the seat and backrest slings on this chair were highly patterned with coloured splashed in pink and purple (and maybe another colour?) on black and it really clashed with the blue of the frame. The OT went out of the room for something and I told mum that I hated it. I remember that at my school they had some old falling apart spare wheelchairs, heavy and uncomfortable and ugly as anything. I told her I wasn’t going to use the new chair, I’d rather use one of those.  I left the hospital without my new chair that day and the OT arranged for me to get one in the black I’d been promised.  I felt comfortable in that black wheelchair when it came and that allowed me to get the most out of it I could.

One of my friend’s parents told me point blank she didn’t understand why I’d not been happy with that blue wheelchair and why my mum had pushed for it to be changed. As a young teenager I didn’t have the words to explain it beyond “I didn’t like it.”

When I was at uni I went to wheelchair services at Stoke. As it was the first time they’d seen me it was a long assessment and involved more professionals than any wheelchair assessment I remember having before or since.  At the end when we were wrapping up they confirmed which of the wheelchairs I’d chosen (there were two which would work for me).  They asked if I had any questions “Yes, what colour does it come in?”  They weren’t sure and could probably find out “I want it in black.” I told them.

Not long after I got that wheelchair I was asked to speak to an engineering student – a friend of a friend – who was doing a project about disability equipment. I forget what it was he designing.  He proudly told me one of the features of his product would be a choice of colours. I wouldn’t have to have black, I could have any colour I wanted – just like a bike or a pair of glasses.  I told him I already could have a choice of colour and I’d chosen black.  He didn’t get it.   I tried to explain that a wheelchair isn’t like a bike or a pair of glasses and black was my choice. To him, it was like a bike and you want it to stand out in your favourite colour.  At the time I had 24 hour care and one of my carers was there and seeing me failing to get through told him she also cared for two other students “One with a blue wheelchair and one with a purple one.”  I’m not sure he got what he wanted from our conversation.

I want a black wheelchair because I like black. And because I like bright colours and I like to wear them and have them stand out.  I don’t want to be worrying about whether my clothes will clash with my chair.  I don’t want to be wheeling round in a chair that’s a colour I hate.

And I want people to see me more than they see the chair I’m sat in.  Don’t ignore my chair, you can admire it and ask questions and acknowledge it. This new one is pretty awesome and I think I’m going to be very happy with it. But I’m more than my wheels and having a black one helps with that.  It’s a part of my body and it needs to work for me.

When the wheelchair tech was here with new chairs for me to trial he suggested we tell him what the maximum I wanted to spend was. Less than 36 hours before that I hadn’t even known my existing chair was unrepairable and I was like “uh…”  Mum told him we wanted me to have the right chair for me and she didn’t want to get into a budget.

I’m confident the chair I’ve ordered (Quickie Jive M Hybrid) is that best  chair for me.  And a part of what will make it work for me IS the fact it’s coming in black.

Challenger Oxford Regatta 2016

The last weekend in May was the Challenger Class Association Oxford Regatta. And this year the Oxford regatta was also the English National Championships.

For various reasons I stopped attending any of the regattas other than the Oxford one a few years ago. Part of me would like to go to more of them but it was definitely the right decision.  This year I very nearly didn’t take part in the Oxford regatta either but I’m so glad I did, I had a brilliant time.

I’ve written in previous years about the difficulties I face with regattas – I’ve struggled a lot first with being able to sail so many times in a short period (usually the fleet goes out four times over two days) and then when I could manage that many sails, with being able to tolerate being in the boat for the long periods of time required.

Those problems are the main reason (although with my anxiety and spatial awareness issues which are linked in this case) that I still sail in the bronze fleet rather than moving into the silver as I’ve previously been encouraged to.

This year it felt like for the first time everything came together at once and worked.  The weather was good (I even did one of my sails with just a t shirt under my lifejacket), the wind although flukey with occasional gusts was at a managable level. I had no problems getting a buddy to sail with and we had such a great time sailing together. I managed to get out on the water every time the fleet went out.  I didn’t get freaked out.  And I didn’t get too sore being in the boat for long periods. It was uncomfortable, especially towards the end of the sails and I was achy after but it was tolerable in a way it hasn’t been before.

There were three of us sailing in the bronze fleet this year.  Out of six races, we were jockeying for position and our ranking varied.  We even had a couple of “photo finishes” But I won four of the six races (for the Bronze fleet). And I won the Bronze fleet – coming 9/12 overall.

Which means that I am the Challenger Class Association Bronze Fleet English National Champion 2016.

It’s the second time I’ve been champion.  The last time, several years ago, I beat one other person by 1 point and I didn’t really feel like I deserved it.  This time I beat two other people and was 5 points in front of the person who came second.  It was more of a challenge to achieve that this time so it really feels like more of a real thing than it did before.

I’m so glad I changed my mind about taking part!