was it something i said?

So last night I went to the pub with my brother. It's been a while since we\ve been able to meet up - and seeing as I am now fully vaxxed up (COVID and Flu), this seemed like the perfect opportunity.

He came over to where I live and because I was feeling a littlebit 'leggy', I decided that I would drive - we are responsible drivers, ok? Don't drink and drive.

Anyway - another reason that I drove was because my electric scooter (yes, there's a story to be told about that) lives in the back of our car. Not for any reason other than it would fill our house and the chances are, when I use it, I'll probably be in the car.

So we parked up nearby, assembled the scooter, and made our way into the pub (actually not the most accesible venue but we made it work). On arriving I saw an old friend from one of my previous freelance marketing jobs, sitting at a table with two people I ddn't know.

After saying hello, he held up his beer and said that he recommended that I try it. Now I'm a bit of a wimp when it comes to beer - I like a nice, light IPA (Indian Pale Ale). What he was recommending looked black and decidedly "heavy." 

Without thinking, I said "I'd better not, I'm driving." 

And as soon as I said it, I regretted it.

The table exploded as if I'd delivered the punchline to end all punchlines.

Because I was driving! But not in a car! I was driving a mobility scooter! You get it? It's funny 'cos it's true!

One person at the table then said the classic line, "Have you got a license for that?!"

It was all I could do to stop myself telling them all to fuck right off.

Look. I know that I'm possibly a little sensitive about this. A mobility scooter is something that I've fought against for a long time. I've only been out on it locally a handful of times, so I'm building my confidence up slowly.

More to the point, I understand that people get a little awkward around mobility aids and the people using them. So if they get a chance to make a weak joke to 'lighten the mood' they're going to grab it - especially if it's gifted to them by the person using said mobility aid.

But people, please!

adventures with mobility aids (and a fragile ego)

Just before Lockdown 2 came in, we decided to go to a park near where my parents live (and where I grew up). I knew that they had Tramper off-road electric scooters to hire so I called them up. After my previous experiences at National Trust properties, I didn't hold out much hope.

So, imagine my delight when the lady I spoke to told me that, yes, the trampers were available to hire that day. She also expressed dismay when I told her about our previous experiences - "Surely this is a time when everybody should be encouraged to go out?"

I could've hired the scooter on a 'Pay as You Go' basis. But by the time we got there, we'd already decided that I was going to sign up for the annual membership. Especially when we realised that it applied to six different sites across Derbyshire.

After a quick play around with the controls we were off. And no more than 2 minutes along the path I had to manoeuvre through a kissing gate. With a bit of encouragement, I ended up reversing into it and was on my way. It was super-easy to use.

Over the course of 4 hours I covered more ground on that park than I had probably done in over 20 years. And the ground was prett muddy and uneven. 

It was a great day for us all and any concerns I'd had about using an electric scooter were irrelevant.

Long-time visitors to this blog will know that I've struggled ENDLESSLY with the idea of adopting mobility aids - as I've transitioned from one walking stick, to two, to a manual wheelchair. But the idea of electric scooters seemed to loom largest in my mind.

So what changed?

Well, recently on walks with the family, I've felt like a (literal) burden, as family members run themselves into the ground pushing my chair.

This is in no way with regards to how they feel (I hope!). But I keep telling myself that I want to walk as far as I can. And then I find I can't walk very far. So I end up needing someone to push me in my chair, which inevitably reduces our days out. Or - more likely - I'll probably stay home and miss out.

But there's only so much of that I (or those closest to me) can take. And while I might think I'm being thoughtful to Mrs D by not going out with her and Little Ms D, it's really just a bit sad. Plus it's also pretty selfish. Why should Mrs D have sole responsibility for taking our daughter out?

Even so, an electric scooter always seemed like some tragic final stage in my "journey" (ugh). We've talked about it in the abstract and it always seemed too big in my mind.

How it actually felt, though, was totally the opposite. I felt (strangely) less visible on an electric scooter than I have done when I've been pushed around on my regular wheelchair. 

Was this just my own paranoia that people were looking at me as a helpless person to be pitied?

And, in my head, did driving an electric scooter make me more independent?

PLEASE NOTE: this is purely my experience. There is no judgement implied on anyone else's choices.

But I know that it's something I've struggled with - as I said, it seemed to be a much bigger deal in my head than it was in reality.

It was interesting that, when I was driving the scooter, we passed a young woman who was being pushed in a wheelchair. I didn't hear her, but apparently as I was passing she said "I wish I had one of those".

http://www.accessiblederbyshire.org/

song for a future generation

I am tired, I am afraid
My heart is full of dread
"Soldier" by Richard Dawson 

This was the unnecessarily "on the nose" soundtrack to my last #tysabri infusion which was no fun at all. It was so long ago, I'm almost ready to go back for my next one. 

I started writing a blog post during that infusion but it was so whiny and angsty that I decided to shelve it until the moment passed. 

Obviously I'm still waiting. 

In a sense, life is - for everyone - an endless, perpetual NOW. Things change and they stay the same. Rules change, restrictions are lifted but the results are the same. 

Life seems to have returned to how it was in February / March. My sleep has certainly returned to how it was then - sporadic and unsatisying!

A complete lockdown seems inevitable so we're stealing ourselves. We're trying to stay abreast of the developments but also trying to stay sane. Keeping things light for our daughter but preparing for when everything changes again. 

I can't help feeling that there will be some kind of global outbreak of post-traumatic stress if/when this ever ends. Yes, my flippant response to anyone asking me how it has been for us is, "Well, I don't go out that much so no change there". 

But really, the first lockdown came at a time when I'd got a little braver at taking risks. Longtime visitors will know that my self-confidence has taken a battering over the years, as my mobility has gone south.

(This is not a situation which is unique to me, obviously)

But at the end of 2019 and at the start of this year, I had been getting better. At leaving the house, at taking (small, calculated) chances. And in the last month or so I've been made aware that I've reverted to my past bad behaviours. Staying in whenever possible and having mild panic attacks whenever I do leave the house. And freaking out if things don't go to plan. 

The pandemic is an exhausting situation for everyone but surely it has to be particularly bad for anyone living with some kind of chronic illness. Not least because of the fact we're seen as canon fodder or collateral damage. 

And all this is even without considering the utterly terrifying prospect of Long COVID. 

But at the same time, we've seen that accessibility IS possible. More and more events have been streamed online. Working from home has been normalised. For god's sake, even my mum and dad are doing their grocery shopping online. 

With the emphasis on getting back to normal, going out to work and supporting the economy, are things eventually going to revert to how they were?

Maybe this will be the lasting trauma from COVID for the chronic illness community. The memory that there was a time when events were accessible and remote working was encouraged. A time when the general populace had a little insight into the fears that disabled / chronically ill people have lived with for years.

That your continued good health is not a god given right. That no-one's job is secure. 

After all that, it would be terrible if everything just returned to the way it was before. 

I am tired, I am afraid
My heart is full of hope
"Soldier" by Richard Dawson

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 social model of work

When I started writing this, it was a year to the day that I was chatting with Kathy from FUMS about the fact that she was looking for a new podcast editor. I asked what it might entail, she let me have a go, and the rest is (fairly-uninteresting) history.

However, what is fascinating to me is that at this point last year I didn't really know that a Podcast Editor was even a thing, let alone MY THING.

dignity through work

By the way I make no apologies for talking about work in the majority of my recent posts. I think that work CAN bring a feeling of worth and a sense of dignity.

Personally, when I had my MS diagnosis, I didn't really want to think of myself as being over the hill. And I was lucky enough to be able to work in predominantly full-time positions for over 10 years.

work culture has to change

I know only too well that some people don't have the choice of whether they work or not. But for those that do have a choice, I think that the world of work and employment has to change to accomodate what disabled people and those with chronic health conditions can do.

It goes back a long way to something I learnt a long time ago about the different models of disability. In brief:

The Medical or Individual Model of Disability suggests that the disabled person is the problem

Whereas...

The Social Model of Disability shows that the societal barriers are the problem

And to my mind this applies to the way in which people traditionally view work.

what a way to make a living

The thing is, I don't think traditional work (9 to 5, five days a week, office-based) is physically and/or mentally possible for me anymore. Especially because all my work history has been in the arts where 9 to 5 actually means, "37.5 hours a week, plus weekends, evenings and additional hours are expected, for which no overtime will be payable".

And that's even without the endless flipping meetings! I may even have to hand in my CULTURAL ELITE membership card. #sadface

As I've mentioned before,  this appears to be changing in the US, where some employers have "made [the] hiring of people with disabilities the next front in the effort to diversify workplaces".

Even when I was working freelance on the photography festival earlier this year, any remote working that I did was deemed to not be quite "proper".

Being able to work from home should be more accepted in this day and age, don'tcha think? Especially for those of us with bonus awesome health conditions.
 
Personally I think working from home allows me to get more done. FULL DISCLOSURE: sometimes I'm even in danger of working more hours than I should.

The big thing for the New Year is cracking being able to fit in some proper consistent exercise, to go along with making my first million.

No biggie!

live music and accessibility

Last weekend I had pretty much the perfect disabled-person's gig experience.

A friend spotted that the buzziest of current UK buzz-bands, Black Midi, were playing at a nearby art venue. Along with another friend, we've been listening to them for the past few months and we were lucky enough to get tickets - they don’t publicise their gigs and have a minimal online presence.

I offered to drive because I wanted to take my wheelchair - pretty handy having somewhere to sit and I wanted to make sure that I wasn't too fatigued for the drive home.

The venue's website states that they "have an accessible building with lift access on all floors". But I've been burned before so on the afternoon of the gig I called them up to make sure that it was going to be ok. (Yes, it was last minute but we only found out about the show a few days beforehand - like I said, minimal online presence).

The person I spoke to could not have been more accommodating, telling me which entrance to use and that there would be somebody waiting in the (closed) shop to take me and my friends down in the lift.

Through past experience I wasn't entirely convinced that it would all pass off so painlessly. But I'm pleased to report that everything worked beautifully. There was even another person waiting for us when we got to the bottom, and once we were down there it was all beautifully flat.

I stood for both sets - using my sticks or leaning on the back of my chair - and both bands were brilliant.

The support act were Nottingham's own Rattle and during their set Black Midi's Tour Manager came up to ask if I wanted to go to the side of the stage for the headline set. I was really pleased to be asked but I'm a bit Old Skool (as well as just generally old) and I like being in the middle a bit further back. It turned out that the position he was offering me was directly behind the drum kit and, as Morgan Simpson beats the crap out of his drums, my ears would still be ringing now, a number of days later.

I caught up with the Tour Manager at the end of the night and thanked him for his consideration and for the fact that they had come to a venue which was so insanely accessible. In recent years, I've had to miss a few of my favourite up-and-coming bands because they've played at a venue which is only accessible by stairs (with toilets only accessible by more stairs). Yes, I can get to Arena venues and bigger spaces but sometimes you want to go somewhere up bit more up-close-and-personal, don't you?

He expressed dismay that this was still going on - "Isn't that sort of thing illegal now?"

Well, yes, technically. It should be the norm that live experiences should be accessible to all shapes, sizes and capabilities. But we all know that this don't necessarily make it so.

I love going to gigs and I don't get to do it as often as I like. It's still mildly frustrating that we have to call up in advance to ask questions and lay out the details of our needs to complete strangers. But this goes to show that it can be totally worth it. And an increasing number of places accept the Access card as proof.

By the way, the gent who let us in at the start of the evening was even there to let us out at the end of the gig. Bravo, Nottingham Contemporary. And many thanks to my lovely mates who pushed my wheelchair for me when I needed it.

If you want, you can even hear a lengthy email I sent into the lovely Marc Riley on BBC 6 Music the following day - it's a long email but he read the whole damn thing (with a few interjections of his own) from 09:20 here.