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.

What I haven’t missed in lockdown

I was struggling a bit with my mood last week. I commented to one of the carers that I had a few things planned – a top up food shop, a trip to podiatry etc and I hoped doing those unremarkable, normal things would help. Certainly in the November lockdown I had a shitty few days and then had a day that was what would have been normal pre-covid (my Dad came to look at my washing machine, I went to the dentist and into coop.) and unexpectedly it really helped.

Well I did my top up food shop yesterday which was only the second time I’d been in a shop this year (the first time was last week). And today I went to podiatry.

I experienced ableism in Sainsburys. On the way to podiatry I got stuck because a car was blocking the path outside a house having building work (not the first this year I’ve got stuck at that point) and I had to ask a lady walking a dog to ask the builders to move it. And then on the way home I had to go in the road briefly to get round an Amazon van.

So I don’t really feel better. But being angry has distracted me from my depression. And sending Sainsburys tweets about what happened did give me something to do I suppose…

Ableism, discrimination and microaggressions have always been part of my normal that disappeared rapidly and almost unnoticed when I started shielding, And I did say I wanted some normality. I’m not naive enough to think it was never going to happen again. But this was definitely a case of back with a vengeance.

I can’t say it was the normality I wanted, or that I missed it,

An update four years in the making

I used to go to The New Theatre in Oxford a lot but I haven’t been there since December 2014. Long story short we tried to go to see Dirty Dancing for my birthday that year and ridiculous access problems and terrible staff attitudes meant we couldn’t – and I didn’t feel safe trying again.

I wrote about that in several posts back then – Attitude is Everything was the first. A few months later I wrote Third time lucky? and Third Time Lucky? Yes.

We’ve not been back and I even travelled to Birmingham and stayed in a hotel to see a show that I was desperate to once. Even though it was coming to Oxford (I often go to shows in Birmingham with a friend but she didn’t want to go to that one). But this year Kinky Boots is touring and when I tried to book for Birmingham I couldn’t get tickets that weren’t restricted view.

So Mum and I discussed it and decided we would try to go to the New Theatre again.

We went and it was OK. The show was great and I got in and out of the auditorium fine. I was worried about that and didn’t think it would happen. And I was pleased once I was back in the foyer at the end.

The only real problem was that the wheelchair spaces are at the back only and there were a couple of drunk girls in front of us causing a nuisance. It ruined the first half of the show with their attention seeking attitude and keeping talking. Plus repeatedly waving their arms around above their heads and standing up blocked my view. I spoke to the ushers at the interval and they dealt with it (they had already noticed and I’d noticed them noticing but I wanted to be sure they were doing more than notice). They were taken out to speak to the manager and didn’t return. But the ushers came and spoke to me and said they had “chosen to leave”. I was pleased with the way they handled it.

Kinky Boots is a show I’d recommend. I’ve been listening to the soundtrack ever since and one of the songs keeps getting stuck in my head. I don’t think we’d go and see it again anytime soon but I wouldn’t rule out ever going again.

I’m not so sure if we’ll go back to the New Theatre again. It’s a bit of a moot point because at the moment everything they have coming up we’ve either seen, don’t fancy or want to do but can’t do the dates.

But it was still the lift I had all the problems with back in 2014; I could see that from the manufactured date in the lift. And when the access usher came to say hello at the start she asked if we’d been to the theatre. We said we had but not for a few years and Mum explained the problems we’d had. Her comment was that the lift is a bit tempermental but she was surprised I’d had to miss the show because they do have a ramp to put on the stairs.

I wish I could say I can’t believe that four and a bit years after all those arguments about the safety of that ramp they’re still using it and claiming it’s safe. But I’d be lying. All I can say is I won’t be using it and I don’t know if I can risk going there again on the off chance it’s that or nothing.

The Future Starts Here

One of the exhibitions we went round at the V&A on Monday was The Future Starts Here – 100 projects shaping the world of tomorrow. Going to that was a spur of the moment decision but definitely a good one.

Some of the things featured where everyday type products – iPhone’s and smart devices (Amazon Echo/Alexa, specifically). Some were products and projects I’d heard of like driverless cars and cryogenics (referred to as “life extension”) – I couldn’t decide if the emergency kit and instructions for what to do when someone who has chosen cryogenics dies were scary creepy or interesting.

Others were things I had heard of used in different ways – crowdfunding had been used to build a bridge and that was featured. And there were things I wouldn’t have thought of.

The whole exhibition was very thought provoking, well laid out (much easier to get round than the Frida Kahlo one) and I was pleased we had chosen to add it to our day. I’ve been collecting pictures and ideas for writing prompts recently and found several interesting ones to add in there. I think my writing might be going to take a very sci-fi twist if I use them.

At the end there was a collection of letters and a sign reading “The future is” with a stage underneath. Instructions encouraged you to use the letters to spell out what the exhibition made you think the future would be. Take a picture to share online.

So I did (or rather my friend organised the letters for me). I couldn’t get my wheelchair on the stage. So there was only one choice of word

Emma in her powerchair wearing a pink top with her hair in plaits. She’s sitting in front of a bright pink stage that has a step to get on it. A sign above reads “the future is” and Emma’s friend arranged letters on the stage to read “inaccessible”
The future is inaccessible

Allegedly Accessible

There’s something of a myth that everywhere has to have wheelchair access now because “the law requires it.” In reality, the law (Equality Act, 2010 which replaced various antidiscrimination laws including the Disability Discrimination Act) requires companies and venues to make “reasonable adjustments”. So they can argue there’s no demand for adaptations or it’s too expensive to do so.

And in practice it often takes someone arguing for improved access or even the threat of court to get it. The reality of my life as a wheelchair user is that things are a lot more accessible and inclusive than they were when I was a child, but no where near as good as a lot of people think.

Lack of awareness and even sheer thoughtlessness also play a part in making things either inaccessible too. There have been many a time when I’ve rung somewhere and explained my needs. Only to arrive and find they forgot to mention the steps or didn’t think they mattered because they were only little.

It’s exhausting, demoralising and upsetting. And I don’t know what to say to change it.

Just that my main memory of a long ago wedding isn’t how lovely the bride looked but of falling out of my wheelchair on a step in an allegedly accessible venue.

That I remember going for a Christmas meal with a group I’m part of and laughing off offers of another drink as me watching my alcohol intake when in reality I knew there disabled loo was not going to fit my wheelchair.

And of spending 20minutes getting somewhere in my powerchair only to spend 15 more sitting outside while the people who hired the venue tried to figure out getting me in as a manual could be bumped up the small step but my powerchair couldn’t. I left without attending that meeting.

All of those places told me they were accessible, but they weren’t to me,

The same bad service

We have a new extension to the shopping centre here. It opened a few months ago and it’s disappointing. It’s rather empty and most of the shops that were talked about haven’t come. But a week or two ago the much hyped Nandos finally opened.

I don’t get the big deal about Nandos but admittedly I’ve only been once or twice and that was years ago. My route to and from CAB takes me past it so I’d been occasionally noticing progress and looking forward to seeing if it’s worth the hype.

Then it began to look more and more like they’d taken their perfectly accessible new building and made it completely impossible to get a wheelchair in there. It’s built into the side of a hill and they’d levelled off the outside and put steps up to it. Or you could go up the hill slightly then turn back to where it was level. Until they set up an outside seating area that filled almost all of that and a tree blocked the small part that was left.

I was furious. Mum was talking about going down on opening day with the press. And a lot of other people had noticed – a friend had spotted it a day or two before I did and complained. When I posted about it on twitter their corporate social media team said all restaurants would be accessible “if possible”. Then when I pushed them and a lot of other people commented how inaccessible it appeared, they said they’d pass it on.

A message to the Nandos Didcot facebook page got the response that the layout was temporary and it would be accessible, it had always been going to change. I don’t really believe them. Experience suggests otherwise.

When I was talking about this with someone they asked if I would actually go. I said probably. Some friends and I go out to eat once every few months and before this came up we’d talked a few times about trying Nandos. But that it wasn’t about going there, it was about having the option to go or not as I choose, the same as everyone else. Rather than having that choice taken away from me by someone’s having forgotten about those of us who come with wheels when making design choices.

Fast forward a month or so and it’s been open about two weeks. We tried to go on Saturday and got turned away. They’d refused to take a booking and when we got there said it would be a 30 minute wait for a table even though there were loads free. They turned several other parties away when we were in there. Not enough staff apparently. The reasons and how long it would be was all a bit vague so we gave up and went to Prezzo. I’ve since heard a friend has been turned away 3 times.

It’s almost a perfect example of equality because it’s bad service and it puts me off going back. But as much as I’d rather good service, all I ever want is equal treatment. And that’s what I got this time – the same, equal, bad service as else.

Not five minutes but five weeks

Today is Blogging Against Disablism Day.

For the last five weeks I’ve been dealing with a somewhat ridiculous access situation.  What I actually need should be incredibly straight-forward. I need to be weighed.  I am not allowed to go sailing until I can confirm my weight to the powers that be. That’s because they’re checking equipment safety. I have no problem with that. 

You can buy scales in Argos for less than £30. But as a wheelchair user it’s not accessible to me. The accessible scales you can get cost over £1000. You can go to the GP to get weighed. I can’t. There isn’t considered to be a need for accessible scales.

 I’m told I don’t need to be weighed,  I can track weight gain or loss through measurements or how my clothes fit. I’ve been having versions of this conversation for years.  But I do now need to be weighed.  To keep me safe and more importantly to keep those helping me at sailing safe.

This whole situation is ridiculous. No one who might be in a position to help seems to want to help.  Those who offer help can’t do anything. 

People have led me to believe access was available when it wasn’t. People haven’t understood what I need and then got annoyed when I corrected them. I’ve been asked three times in the space of one phone call “you cant stand on the scales?” I sent an email to somewhere that we think can help and their admin person replied that they had passed my query on to the relevant person. This is somewhere that request email is used if possible.  Three weeks later I chased it and got what boils down to “you know we’ve had your email, shut up and wait” in reply.

I don’t usually have “if I wasn’t disabled” on my radar. It’s not healthy and it’s not necessary, as a CPer life on wheels is all I’ve ever known. But there is no escaping the fact that I’m currently five weeks and counting into trying to find a way to do something that were I able-bodied could have been done in five minutes or less. And I don’t know when it will be resolved.  


Earlier this week I was talking to an acquaintance who was saying I handle things very well.  They’d been around when I’d found myself struggling with access woes a while ago and been impressed with how I handled it. It’s not the first time since that this has come up. They mentioned that I’m not the only disabled person they know and the others get angry in ways I don’t. I think it is – or was meant to be – a compliment.

I’m not sure I did handle it well. I’m not sure it’s a situation that can be handled well – life doesn’t come with a handbook for what to do when yet again the wheelchair access you’ve been promised isn’t there.

And these are situations that often seem to end up with victim blaming “oh well we weren’t planning to invite you but we had a spare space” was one line I heard last year “We don’t get many wheelchair users” is another I’ve heard many times before and of course there’s last week’s “you’re using the wrong door“.  “Trying to do something nice for you” “my brother’s best friend’s mum’s sister uses a wheelchair and she can manage” and many other comments along those lines have been said over the years all of which give the idea that it’s not actually the lack of wheelchair access that’s the problem, it’s me that’s the problem.

So sometimes I handle something quietly and with a calm I don’t feel.  Because whilst I’m not worried it’ll cause a scene but the memory of that victim blaming cuts deep and can’t be forgotten. I don’t want people to stop inviting me to things because of that and some reactions have made me worry that might happen. Or because I might start crying if I don’t.

Occasionally experience has taught me that in those particular circumstances things might not be ideal – so I’m prepared for shit access. And nothing helps you handle it well better than a complete and utter lack of surprise.

But there are two other reasons why I may be reacting to an access problem better than you expect.

Because this my normal. And sometimes you’ve paid the money, looked forward to the event and made the journey. You’re there and you can do nothing but make the most of what you’ve got.  Do what I can, enjoy what I can and consider afterwards whether it’s a lesson learned, a don’t go there again, a complaint or an “actually that worked better than hoped.” Because sometimes, rarely, but sometimes nonetheless people are faced with a wheelchair user struggling and access being worse than expected and really come up trumps with help and solutions to improve things.

Or perhaps I’m just exhausted. Tired of having this problem all the time and lacking in the energy to make a fuss once again when it’s unlikely things will change.



An Evening in the Pub

I wasn’t going to blog about this but one of the others on my journalism course suggested I should.

Earlier this week a bunch of us from CAB went to a pub in a nearby town to eat.  It was our post Christmas, Christmas social (we always have it in January).  It’s not a town or pub I know. But based on what I’d heard of the access I didn’t have alarm bells ringing

Then we got to the pub and as my colleague drove past the main entrance and into the car park I could see it had a step. I didn’t know about that step.

Across the dark car park we go. I’m hoping I’m not about to wheel into a pothole I can’t see and tip myself out – the downside of the manual is it tips so much easier than the powerchair. And we try to go along to the back entrance. But the path in the beergarden is narrower than my chair and so my wheels are sinking in the mud where it’s been so wet. I can’t wheel myself through it and nor can anyone else.

Round to the front to look at that door. It’s not happening. Two inch step and a then a tight right angle turn to go through another, narrower door that no one thinks my chair will fit through even if we could get me up the step.

I’m beginning to think I’ll be ringing my Dad to come get me. I don’t know that I’m going to get into this pub.  But then a staff member appears and she suggests getting me in through the kitchen.  It wasn’t level and I needed help to bump up and over the lip and negotiate the tight turns in this old, listed building.

At last, surprisingly, I am in the pub. I greet my colleagues and get a drink.

Then I go to wash my hands because they’re muddy from the attempts at crossing the garden. I come back out of the disabled toilet with clean hands but the knowledge that I won’t be buying the “next round” I’d said I would. Because for some reason there’s only one grab rail in there. By the sink. So I’m making my drink last and putting up with my thirst and hoping I don’t need a wee.

I did enjoy the food and it was really nice to see everyone and have a proper chance to chat. I saw several people I’d not seen for ages (possibly not since the last social in the summer in one case) and met someone new who volunteers on different days to me. It was good.

Then it came time to leave. As they were getting me out, a different staff member was helping. He made some comments, I forget what, and I said “I was told you were more accessible than this.” And he told me the problem was that I was using the wrong door. Wheelchairs always use the front door. “But that’s got a two inch step.” says I. He didn’t reply to that but as he moved out of my way and I wheeled towards the car I heard him tell one of the others that they might look into getting a ramp.

The person who organised our meal emailed me a couple of days later to say she’d sent the pub a message to thank them for our lovely evening. She copied part of the managers reply (who might have been the person who helped my out, I’m not sure) and he apologised for the difficulty in getting “the wheelchair” in and said they are going to look into what they can do to make the front door better accessible within the limits of how old the building is and it’s listed status.

That’s brilliant. I’m pleased that they saw my difficulties and say they are going to try to resolve them.  I’m even more pleased that it didn’t take me writing a letter or making a complaint afterwards to do that.  I won’t go back but it’s nice to think that maybe, just maybe, another wheelchair user who comes after me won’t have so much faff and struggle.

But I really would love for someone to explain to me just how people forget to mention (or don’t even notice) the bloody great step to go in.  Because sadly places do that all the time. And I just don’t get it.


I’m a professional cynic but my heart’s not in it

Ages and ages and ages ago someone got really annoyed with me because I reminded them that I have access needs. They knew it and more importantly the person doing the organising of that event knew it and as they put it I needed to trust they both because I knew both they and the other person wouldn’t forget. They even went so far as to suggest that my asking was insulting to the third party doing the organising.

Which frankly is bollocks but was just another example of this particular person thinking they understood disability and saying ridiculous stuff, much of which was well meaning but inappropriate.

The hilarious thing about that is that if the third party they were so insulted on behalf of had been part of the conversation with the reminder they wouldn’t have been insulted and would have got why I worry and always have to check. Because the third party has a disability that means they have had periods of needing a chair.

I was thinking of that long ago conversation recently when events dredged it up from where it was lost to the depths of my memory and the years past since then.

I was invited to an event. Asked the person inviting me does it have wheelchair access? They didn’t know. I located details of the venue and sent an email, started looking at train times and the like while I waited for a reply. There is access to all but the loos at the venue. If it were local ish to me I might have risked it but it would have meant a few hours on the train so I decided against.

A couple of weeks later I was invited to another event. Decided I definitely wanted to go to that and was very excited. I’ve been to places near there before and knew it should be straightforward. Had a quick look at train times because it was a CAB day – way after my CAB time but I wasn’t sure if I’d fit before in with travel time. Had a quick look at hotels because if I could find a cheap one it would be cheaper than travelling home late at night (would need a taxi from Reading probably). Then I looked at the venue website. It looked great. But I can never quite bring myself to trust on access – experience has taught me otherwise. So I looked for the contact details. I never made it that far. Right above the phone number “sorry we don’t have wheelchair access.,”

Excited to really upset in one quick movement.

And then yesterday I was booking to go to a meeting. I looked at dates for London and for Birmingham sussed out travel for both and decided which was best. Put my name down and got an email back quickly saying I had a place but they needed a phone number in case of last minute problems. So I winged one back with my mobile number and mentioned I use a chair. I didn’t expect it to be a problem because of the type of  event and the venue website screamed “new building that’s going to be accessible.”

But the email I got back said they couldn’t guarantee there was wheelchair access.  Ugh, stress. I suspected I wasn’t going to get there and I was thinking what a waste of time all the logistics I looked into were. They have since confirmed to me that there is, in fact, access. So all is good.

In all three cases it seems that the person doing the organising either didn’t look into access, possibly because they didn’t think to or assumed no one with access needs would want to, or were unaware of the accessibility (it turns out with the meeting that the organiser and the replying to emails admin person weren’t the same and one knew the other didn’t)

This is why I’m cynical about access.  This is why I’m uncomfortable allowing anyone but me to be the one to make arrangements. This is why I always have to ask and I find it hard to trust.  It’s not how I want to be but it’s how life and bitter experience have taught me I have to be.

As Blur sang “I’m a professional cynic but my heart’s not in it…”