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.

the thing about the heartsick shut-in

This brilliant song by They Might Be Giants was my earworm this morning. It made me laugh, the way that clever, rhythmically precise lyrics can.

And then I really started to pay attention to them.

Renew my subscription
To "Desperate Bellowing Magazine"
It sure does have a familiar ring
You might say I fit the description
Renew my subscription
To "Miserable Freak Show Quarterly"
Every back-number I saw spoke to me
Acknowledging it's my addiction

Although it would be natural to be tired of feeling like a "heartsick-shut-in", nearly five months into the UK's delayed lock-down, in all honestly it hasln't involved massive changes to my everyday life.

• Still working? Yep*
• Too much? Possibly
• Going out regularly? Well, as much as ever (i.e. not so much)

* By the way, the fact that the government has stopped shielding vulnerable people with chronic health conditions and is effectively forcing them back into work makes me sick. I’d hoped that the pandemic would make employers appreciate the value of remote working. I guess I missed a meeting. 

As I mentioned before, I've been getting more regular exercise than I have in years. In fact, I'm still displaying more commitment to the Joe Wicks exercise videos than the man himself. It became part of our home-schooling schedule so we carried on doing weekday mornings even when Joe went part-time. Plus me and Little Ms D did extra sessions on weekends, and we're still going.

Recently there has been a bit of talk about swimming pools reopening. Much as I miss swimming, I can't imagine anything less likely at the moment.

Like a kind of filthy, random stock-pot! Yikes.

On the couple of occasions I've been to the hospital for my Tysabri infusion, when asked the standard question about if I have any alergies, I have said, "Only other people." I really don't have much faith in the British public's much vaunted stock of common sense.

I mean, it's never a good sign when American friends send WhatsApp messages, mocking events such as the terrible scenes at Bournemouth last month. That's right. American people, from AMERICA, think that we're idiots.

A catchphrase of mine and the divine Mrs D's was prompted by a story on our local news programme. This was immediately after the announcement that people could book foreign holidays, a ruling that, in itself, didn't last that long.

I'm sure that, as I write, the official line is that people are being encouraged to book holidays in order to support the tourism industry. However, they should expect not to be able to travel. I'm pretty sure that, had I ever been arsed to finish reading Catch 22, this might make some kind of sense.

Anyway, in the news report that evening, they interviewed a woman who was going towards check-in with her kids. They asked her why she was travelling. She said something along the lines of, "The schools aren't in, and we'd seen that bookings were possible, so we just thought, 'Why not?'"

To which we responded, "Because there's a frigging GLOBAL PANDEMIC!"

So "we just thought, 'Why not?'" has been a recurring joke, whenever another brainfart recommendation has been mooted. Maybe we have a slightly more sensitive attitude towards risk than most people.

I wanna be a much better person
Instead I worsen with every day
But there's a drug whose name I'm not sure of
Which I need more of to feel okay

Read the full lyrics to Renew My Subscription.

remembering live music 4: the missed and the misunderstood

A quick detour from these posts - which could come over as "cooler than thou I WAS THERE" grandstanding - I'm going to talk about a few artists that I either missed or just didn't get at the time.

1. Pavement, Derby Wherehouse, May/June 1992

Yes, this was the band's first ever UK gig. Yes, they were all over the British music press. And yes, this was a hot-shit ticket.

But I only went because a friend of mine from college got a ticket. At the time, I was a right snooty so-and-so who saw them as a complete rip-off of The Fall.

But, y'know, the difference was they wrote HUMMABLE SONGS and seemed to be charming and amusing people.

There was one writer in Melody Maker who at the time called skronk avant-garde guitar manglers Trumans Water the REAL Pavement. Which is a statement I agreed with but which is, in retrospect, so needlessly arsey it's ridiculous.

The gig was packed (ooh look, there's the drummer from The Wedding Present!) plus it was a beautiful sunny evening.

Pavement were ramshackle. And cute. And charming. And their original loose-cannon drummer Gary did handstands and chatted with the crowd.

But I just didn't get it. Even though I can still remember some of the tunes they played that night. Because HUMMABLE SONGS.

At the time I preferred the support act, Jacob's Mouse (no, me neither).

I still listen to Trumans Water. But nowhere near as much as I've listened to Pavement in the years since this gig, right up to the present day.

I even wrote huge sections of my University dissertation about their second album, Crooked Rain, Crooked Rain. TRUE STORY.

2. The Strokes, Sheffield Leadmill, 23 August 2001

Another gig that I was dragged to by friends - Simon and Annabel. This was one of their first UK tours but even though all the influences and references were there, again I JUST DIDN'T GET IT.

Was I threatened by how insanely cool and attractive they were? I wouldn't like to say. But probably, yes. Definitely.

They were supported by The Moldy Peaches, who were cute but annoying after a while. I actually listened to them while writing this post and I really enjoyed them.

I think at the time The Strokes didn't even have that many songs so I think they just played tracks from their forthcoming (?) album. Maybe even in the album order?

God, they were cool.

And looking back now, they were everything I want in a band. Locked-in together, no flash, no gimmicks, chops for days.

About 6 months after this gig - so almost exactly 6 months after everyone else in the world - I borrowed the CD of Is This It from Annabel and finally understood. Now I think that if anyone wants to learn how to play alternative/indie-rock guitar they should just play along with this album. It's all there.

As if to prove a point, I've just spent 15 minutes watching live footage of them from around this time. They was great.

I'd completely forgotten that both Moldy Peaches and The Strokes were tainted by the shadow of 9-11: The Strokes first album came out at the end of August 2001 and featured New York City Cops ("...they ain't too smart"); The Moldy Peaches album actually came out on September 11 2001 and featured the song "NYC's Like a Graveyard" - ouch.

3. Bill Hicks, Sheffield University, 26 November 1992

This one hurts but confession is good for the soul. Also, not music although he had a rock-star attitude.

This gig took place during my first year studying at Sheffield Uni. With my brother I'd devoured Bill Hicks' legendary 1991 comedy set Relentless when it was shown on Channel 4. Politically he was light-years ahead and had a great, no-bullshit persona.

Dreadful hair and glasses, however.

His '92 UK tour was around the time he recorded his Revelations set. At the time The Guardian and various left-wing comedians were all hymning his act with its politically edgy material. It turns out Bill didn't want to be idolised. He also didn't like the idea that people felt they had a handle on him.

So for that recording - in front of an audience of paid-up believers and his peers - he launched into an extended, skin-crawlingly appaling bit which saw him adopt the persona of Pan The Randy Goat Boy.

It's truly horrible. But point made.

Two years later Bill died of pancreatic cancer at the age of 32. His legend has only grown in subsequent years. Some of his political material would be entirely relevant now if you could just change the names.

Truth be told his sexually explicit material would have been his downfall had he survived. I dread to think what he would've made of the #MeToo movement or issues of rights for trans people. And some of his material hasn't aged at all well. But that's comedy, right?

So anyway. On his final UK tour (?), he played down the road from me, at the University where I was studying.

And I didn't go. 

Worse than that, I didn't go because I couldn't be arsed.

Nurrrr...

remembering live music no.3

 

LCD Soundsystem, Magna Centre, Rotherham, 13 November 2010

ROAD TRIP!

This gig was at a crazy venue - Magna Science Adventure Centre just outside Rotherham. Thankfully all the interactive exhibits were safely away by the time the gig started.

I loved - and I still love - LCD Soundsystem. I wouldn't say they were strictly dance music per se (Mrs D, who is a bit of dance-music officianado, sometimes dismisses them as 'indie dance'). But they're probably as close as I'll get (chip on my shoulder caused by bad experiences at university combined with my own snobbery).

And the Sound of Silver album is one of my all-time faves - a concept album (kind of?) about careening towards middle-age (hmmm, why would this possibly resonate with me?)

So as soon as the tour with Hot Chip was announced - LCDs FINAL tour, no less - I knew I had to get tickets for me and Mrs D. By the time the gig rolled around, she was pregnant with Little Ms D so my brother was more than happy to tag along.

The tour was a co-headlining-deal with the two bands taking turns to headline - on this night, LCD were on first.

I've always been the sort of gig-goer who doesn't like to be too near the front. The only times I've been in the "pit" are Galaxie 500 (which was never going to be too raucous!), Fugazi (politest, most respectful mosh-pit EVER) and this gig.

Now I have pretty short hair. But when the beat kicked in after the intro of Dance Yrself Clean, it was so LOUD that it moved my hair. I remember my brother and I danced our butts off throughout their set.

Yet again, as a live band they were ferociously tight. Even when one of Nancy Whang's antique synths went haywire near the start of the set they kept it going.

And I don't think there's anything better than watching a brilliant drummer. And Pat Mahoney was - if you'll excuse the language - fucking amazing. He was like a frigging machine, just holding it down throughout the set. Evan when James Murphy wandered over to play bits of his kit in a way which must have been off-putting. If not bloody annoying.

I can't argue with SetList.fm this time - it certainly tallies with my memory, anyway. But I can't believe they turfed out All My Friends so early in the set.

Long time visitors to this blog will know that I'm a massively soppy bugger. One of the things which can set me off are songs about home.

Talking Heads' This Must Be the Place (Naive Melody) is a particular killer. Even Crosby, Stills, Nash & Young's Our House can set me off if I'm in the right mood.

So when LCD ended their set with Home - the last track from their final album at one of their final ever UK gigs - it was just perfect.

I mean, I wasn't anywhere near as bad as this guy from the DVD of their FINAL EVER gig at Madison Square Garden in 2011 but it was pretty powerful nonetheless.

It was so good that we didn't stay for all of Hot Chip's set. It just wasn't able to come anywhere near the majesty of LCD Soundsytem going out at the top of their game.

Except they didn't. Because a few short years later they reformed.

And I couldn't even be mad at them, especially not when I saw them perform Call the Police on SNL.

But imagine being by this guy!

At least he was at the MSG gig.

remembering live music no.2

Pixies, Rock City Nottingham, April 25 1989

Picture young Steve, aged 15, attending only his second ever gig, going to see what was at that time his favourite band. Live music after this point was basically ruined for me.

My (older) brother had seen them play the previous year and we'd got tapes of Come on Pilgrim and Surfer Rosa. Obsessed.

Excitement was only increased by their second Peel session (which I taped, obviously) and this awesome appearance on SNUB TV (which we kept on video until the tape wore out) - I remember telling people at school to watch it.



How can people who look so ordinary - square, even - make a sound so wild? Look at their little faces, they look almost embarrassed to be on TV. Kim had only just stopped going by the nom de disque Mrs John Murphy. Couldn't Black Francis get a clean top?

In advance of the release of Doolittle, John Peel was playing a different song every night on his Radio 1 show. I'd even managed to get hold of a one-sided promo record with four songs on it. I was primed and ready to go.

Which is why it's so disappointing that I can remember so little about the gig!

• They started with "Into The White" which hadn't been released at that point. It had a very literal (and blinding) light show.
• Early in the set they played the (similarly unreleased) UK Surf version of "Wave of Mutilation" - I was convinced they were playing it so slowly because they were f*cked off - too many cries of "You fat bastard" from the more *excitable* and *refreshed* members of the audience?
• "No. 13 Baby" was the only song from Doolittle I'd not heard before I got the album the week before this gig. It's still my favourite track on the album. The light show was awesome for the long instrumental coda.
• And regardless of what Setlist.fm says, I have a vivid memory of them playing "Vamos". Joey Santiago playing much of the solo with a beer can as a slide - and I've just remembered he had a teeny tiny guitar amp!

Kim was pretty much the only Pixie to speak to the audience ("Thanks!" and not much else).
Regardless, I do know that they were bloody brilliant. So loud, so incredibly tight and just completely on it.

A few short years later they were hanging out with Bowie and U2, barely speaking to each other and having band promo pictures taken in their sunglasses.

remembering live music no.1

Do people really need another blog about living with MS in the times of COVID-19? Thought not!

Kind-of inspired by those Facebook posts about "10 books / albums / *delete as necessary that made me", I'm going to be posting about the best gigs I ever saw.

Why? Because reasons. But mostly as a reminder of something which none of us will be doing for some while.

---

Lemonheads, Trent Polytechnic, Nottingham, May 23 1990

The Lemonheads in 1992. Photograph: Ebet Roberts/Redferns

Starting off with a gig which I still maintain is the best I have ever seen. This was in a tiny room just next to the student bar at the old Trent Polytechnic, like a glorified recreation room. It was a glorious summer night and I went with my brother and my first actual girlfriend.

The Lemonheads (or as my gig ticket had it, The Lemon Heads) had recently trimmed down from a fractious five-piece line up to the classic power trio which would go on to record Lovey. At this gig they played stuff that would show up on that album, along with loads of songs from Lick (in my - unreliable - memory they started their set with Mallo Cup). 

They played so long that after a handful of encores Evan Dando said they didn't have any more songs. But the audience wouldn't let them off the stage (the room was so small that they had to push through the front rows to get on and off the stage).

Eventually Evan Dando said (and please remember that I'm paraphrasing based on my aged fading memory so I may have totally misremembered / embellished it all), "I wrote this song today, and after this we've got nothing". He then played a solo version of Ride With Me, still one of my favourite Lemonheads songs.



Like I mentioned earlier, if I ever had to say what was the best gig I ever saw, this was it. It was just a great example of the "simple" pleasure of great songs played well, and the unmistakeable heft of classic power trio. Plus the feeling when you're at a gig where everyone is loving it, and you're all there before a band goes supernova.

"I was there", indeed.

FUN FACT: Lemonheads are also responsible for the worst gig I ever saw. This was in Sheffield on the Car Button Cloth tour with Murph from Dinosaur Jr on drums. This was (I *think*) 1996-7 and Evan was deep into his crack years. Not pretty.

He encored by turning his back on the audience and feeding his guitar back for what seemed like 15 minutes.

Challenging. And more than a little sad.

my superpower is resilience

Recently, there has been a lot of talk about how people with chronic illnesses are uniquely made for life during times such as these.

• Self-isolation? All over it.
• Living with medical and health uncertainty? Only for the past 15 years.
• Dealing with precarious times, when you're unsure how long the status quo is going to last? Well, duh. Where've you been?

Sometimes these posts have been subtitled Welcome to our world. And it's hard not to take some pleasure from this idea. Especially when 'people with underlying health conditions' are viewed (and described) as being only slightly above 'red-shirt-wearing Star Trek characters' in terms of current expected lifespan.

- Don't worry, men. I'll make sure you get a decent funeral
- Which one of us are you talking to?
- Erm...

However, there are better reasons than our wonky genes as to why we might be prepared for living through a pandemic. And I prefer to focus on the fact that we're resilient.

We've had the shit kicked out of us. We've been forced to face up, not only to health challenges but also to being seen as disposable benefit-scrounging wastes of space. And we're still here.

We're used to adapting to whatever is thrown at us. Whatever new indignities our conditions bless us with.

In short order, my own trials include (but are not limited to) increasing reliance on a range of mobility aids and intermittent self-catheterisation (relax girls, I'm married).

We're old masters at getting to our feet when life thinks it has knocked us out.

And we're more than used to coming up with new ways of achieving our goals and dreams when the 'normal' route is no longer open to us.

Our adaptability and hard-won stoicism means we can be bloody tenacious. We know that (as I've quoted before):

We may be powerless to alter certain events, but we remain free to choose our attitude towards them

Other reasons we're ahead of the curve.

• We loved the NHS even before it was cool and / or mandatory.
• We've always appreciated delivery drivers, service workers, helpful shop assistants, the kindness of strangers.
• Online shopping is my only kind of shopping

In other news, I don't know about you but on the whole, everything seems really, weirdly normal.

Me and Mrs D tend to get through the days, trying to make sure Little Miss D is happy, fed, entertained. But even with everything we're doing (or not doing) it all just seems totally normal.

It's only when we sit down at the end of the day to watch our self-prescribed limited news coverage that it hits us that we're living through the scariest, strangest times.

Take it easy out there indoors.