National Trust and disabled access during COVID-19

This might come across a bit #middleclassproblem but stick with me.

We've been members of the National Trust for years. As parents of a young (and seemingly inexhaustible) child, we're always looking for ways to use up some of her energy. And getting out in the open air is good for us all.  

PLUS there is, at most properties, excellent parking, great toilet facilities and a place to get lunch and a decent cup of tea. Also, in our experience they really seem to "get" accessibility. 

We live pretty much smack bang in the middle of the country so we've got some great places to visit on our doorstep.  

Sudbury Hall can provide a buggy service from the car park to the property. A similar scheme at Calke Abbey can get you right the way across the whole property.

Our nearest National Trust site is Kedleston Hall, which you might recognise from The Duchess. 

On a visit earlier this year they provided an off-road wheelchair (which was like a regular one but with BMX bike tyres) that by all accounts was a lot easier to push on the short circular walk. It was certainly comfier than my own chair.

HOWEVER…

(You knew that was coming, right?)

We went to Kedleston last week. Obviously in the light of the Coronavirus pandemic, the hall isn't open and we had to book our slot to have a trip around the park and gardens. 

So far no biggie. Forward planning and preparation are the norm for us.

But when we asked if the off-road chairs were available, we were told no. We kind of expected it but afterwards we couldn't help wondering why?

Yes, we know about the pandemic and the bloody New Normal and all that. But...

Why is disabled access the first thing to go out the window? 

Is it too difficult to wipe things down between uses? Supermarkets seem able to do it.

We'd even be prepared to provide our own Flash wipes. 

*other antibacterial wipes are available

Like I say, we expected it. And to some extent we accepted it. 

But the edge was taken off our day. And it was exhausting. 

My chair is heavier to push so Mrs D was worn out. Because I knew she was struggling, I forced myself to walk more than I probably should have. Which was severely fatiguing, which in turn made my walking worse, which was distressing for my family to see. 

The worst thing is...

It's not just at Kedleston

The accessibility options at other local sites such as the ones I mentioned above are currently severely curtailed too.

It's enough to make me feel paranoid.

I've already talked about the fact that people with pre-existing conditions during this pandemic are like the red-shirted officers from the original series of Star Trek. We get it, we're disposable. If not a downright annoyance.

This article in today's Guardian by Frances Ryan notes the fact that, during lockdown, with working from home, cultural events and venues being accesible online...

It was frustrating and joyful, obvious and revelatory. The secret was out: the world could be accessible. Inequality was actually a choice.

But now that things are starting to open up, are those of us with access requirements just meant to stay indoors indefinitely? 

Now don't get me wrong. I know this is only the case with regards to our free time and doing things which could benefit our mental health. We should forget about doing THOSE. 

But if it's getting our butts back into work? 

Come out, come out wherever you are!

By the way, I know Judy G had some substance issues (that's putting it mildly), but the description to this clip is, "Dorothy is recognized as a heroin of Munchkin Land".

Dark times.

social responsibility and hygiene

I started writing this post while sat in what should, by rights, be the safest space in the country. The infusion ward at my local hospital.

If basic hygiene isn't being followed in a room where people are receiving treatment for cancer and respiratory conditions, as well as MS, then we're all going to hell in a handcart.

There's no denying that it has been a weird couple of weeks. At present there doesn't seem to be much happening with Coronavirus in the U.K., apart from people washing their hands. I can't help feeling that a more complete shutdown is only around the corner [see last minute edit below].

I've had the dried and cracked hands of the excessive hand-washer ever since I started self-catheterising. Let's be honest, when you're putting a plastic tube up your junk, you definitely want to be sure that you've got clean hands.

If the only thing that comes out of the Coronavirus pandemic is that people finally get it into their heads that hygiene is for the general good... well, that might be a good thing. As Mrs D said earlier today, maybe people will start listening to actual experts. Imagine that!

I'm currently reading The Death of Truth by Michiko Kakutani. It's a couple of years old but one of its key points - that we're living in a time where every opinion or source of news is viewed as equally valid as the next - still holds true. It's like how racist politicians in the U.K. are regularly given a platform on mainstream TV and news to expound their toxic views because "that's just their opinion".

I'm only two chapters in but it's pretty striking how this sort of postmodern blanket validity, far from being some utopian libertarian ideal, actually plays into the hands of autocratic despots and fascists. Expert opinion can be simply ignored - see also climate change deniers, flat-earthers and anti-vaxxers.

Similar to the anti-vaxxers, I've heard some people saying that Coronavirus won't affect them because they're young with no underlying health conditions. I hope they learn before it's too late that these measures - vaccines, hand washing, self-isolation - only work if we all play along.

It's social responsibility. We all look out for each other. We all play our part.

[edit 12/03/2020 5.28pm] Despite saying that "More families, many more families, are going to lose loved ones before their time", the UK Prime Minister has just announced that he's going to do next to nothing. *slow hand clap*

the boy in the bubble

Earlier this week marked the third anniversary since I left my previous job. It's pretty mad that it has been so long!

After only a short time I felt that I wouldn't be returning to full-time traditional employment.
It hasn't been easy - as regular visitors to this blog will know. I had to spend quite a long time navigating the benefits system and applying for jobs, on top of applying for PIP (twice) and having the mother all relapses.

It has been pretty trying - to put it mildly. And not just for me but my wider family, especially Mrs & Little Ms D.

However I really do feel that I've turned a corner. I'm working a lot at present and I hope it'll continue!

---

 

Obviously there's a really important election taking place today. The last ten years of democracy have been hugely disappointing for me. The Conservative and Lib Dem coalition. A narrow general election win for the Tories. Ten years of austerity. Brexit. Trump.

This might be the most important one yet. For the future of the NHS in particular.

Previously I've been suckered in by what I have seen on social media. I am well aware of the fact that we live in our own echo chambers.

My feeds are filled with people who think the same as me, the same as your own. But I'm trying not to let myself be tricked again.

A friend of mine from university has worked as a corporate lawyer and is a successful businesswoman. She has been clear about her intentions for this election which has been incredibly heartening to see. Just because you are well off doesn't mean you have to stop thinking about other people. And left-of-centre values are not necessarily anti-wealth.

She has been trying to engage with the opinions of others and recently asked the Tory voters on her feed if they could explain to her why they would be voting that way this time. It was a noble idea but people questioned her intention to understand the other sides' motives and got pretty defensive. And people started on about benefit scroungers, magic money trees and the like.

So after biting my tongue for a while I done wrote a thing:

Soapbox alert. I've been following various parts of this thread with great interest and increasing respect for Suzanne in trying to raise the level of debate on this issue.

I'm not interested in niceties or understanding the other side's point of view. I'm a supporter of the policies and values which are aligned with the Labour Party. I'll be voting for them.

I'm a self employed person with a disability. Being disabled is not a lifestyle choice, it's expensive. I've got first hand experience of negotiating the labyrinthine Kafka-esque nightmare of the austerity-era benefit system.

Ever tried applying for PIP? It's demoralising and utterly depressing. Being questioned and doubted in my own home, and being turned down for this benefit after previously having a lifetime award for DLA (SPOILER ALERT: It's a chronic illness, I'm not getting better) almost drove me to suicide.

And I'm one of the lucky ones who has a support network and whose first language is English. People who vote for the Conservative party are effectively saying that they do not care about me or the security of my family, or for anyone else in a similar position.

It's inhuman to assume that Labour policies will encourage people to sponge off the state. And it's arrogant beyond belief.

I was not born disabled, I was diagnosed with MS at the age of 32. This could happen to any of us.

I have continued to work and pay into the system which benefits us all. There but for the grace of god and all that. Look outside your window sometime.

My preference is clear but I don't really care who you vote for. This version of democracy is the only one we've got and I stand by it.

And party allegiances aside, I hope that whoever gets in can do something to stop the UK being so utterly divided.

See you on the other side!

scenes from the waiting room

Or "What is up with people?"

I wrote this a while ago but I'm publishing it here because I have a couple of hospital appointments coming up over the next week. I hope posting it will mean I can avoid the sort of person I talk about below!

At the hospital for a Tysabri infusion earlier this year there was a guy sitting next to me who was having a loud phone conversation about how shit his life is. About how progressive his MS is and how few options there were for managing his condition.

But he didn't do it in a self-pityingly morose way. It was like he was bragging about how hard he had it. Like the chronic illness version of Monty Python's Four Yorkshiremen sketch.

I get that this might have been some kind of coping mechanism. But surely that kind of chat should be reserved for home. Or the pub. Not in a room full of people, presumably with the same condition, who are battling those same persistent thoughts about progression and increasing disability and decreasing life options.

Maybe it's just me.

But there were a couple of young people on the ward that day. Maybe they were recently diagnosed? And they looked shit scared.

Bet that didn't help.

Shortly afterwards I saw an older guy giving himself an ulcer by stressing about how the busy nurses were ignoring him and seeing other patients before him. Which obviously didn't make them see him any quicker.

I mentioned this kind of thing to a nurse when I was getting a blood test recently. I said that surely this kind of thing never happened to her.

She said you'd be surprised how much mouth she gets from patients - about waiting times or the environment in the clinic - immediately before she sticks a needle into their arm. You would think they would check their attitude before confronting a nurse who has the power to make them very uncomfortable indeed.

I try to be a nice patient - especially when having a blood test - so the worst I get is a nurse who jokes that it's her first day on the job. This happens pretty regularly.

I always think it's pretty obvious that those who are disrespectful towards the people who are there to help them - nurses, hospitality staff, shop workers - have never worked in the service industry.

Talking about this with some box office staff at the Arts Centre where I was based earlier this year, one of them proposed a new type of National Service. One where people have to do 6 months to a year working in the service industry. Or what is sometimes called a McJob.

I think that overall levels of empathy would only be increased if this was brought in.

seems legit

shame of our nation

Speaking to an MS Nurse at my Tysabri infusion she surprised me when she said she'd had some good news that day. Because she had just found out that her application had been successful and she would be allowed to stay in the UK.

Call me naive but this totally blew my mind. That there was even a possibility that this qualified and endlessly experienced and empathetic nursing professional might be forced to leave the country she and her family call home.

Who's next? The MS Specialist Neurologists, who are all EU citizens? Who exactly is lining up to replace them? 

At the same time, a friend shared a video from the Home Office Facebook page publicising the EU Settlement Scheme. Over some jolly muzak, a series of diverse and smiling family and social groups, presumably talking about how much they're relishing the opportunity of applying to live in the communities they have enriched.

See how happy they are!

 

To say we should be ashamed of what our nation has become is something of an understatement.