With thanks to Katie at Transport for All who said at the National Parks zoom workshop “it would be so nice to hear about Disabled people getting out and just doing stuff without anything going catastrophically wrong.” You were completely right, and this trying-not-to-rant blog is for you!
So, I’ll talk about what we’ve been up to.
Our Unicorn Tandem
This morning, we cycled to an appointment for one of the kids. We cycle pretty much every day- whether for school runs, getting to shops, clubs, to see friends, or whatever. It wakes us all up, gets the day started and ensures we get a bit of exercise. I ride an e-tandem, usually with our daughter. It’s covered in unicorn stickers because technically it’s her bike: I can’t push, she can’t steer- but together on an e-bike it all works! Having the motor always on max means riding is way less effort than walking, and I can keep going enough to keep moving even when my pain levels go really crazy- so I know we’ll always make it home! It’s good to see some of the local parks and green spaces we help maintain each time we go out- it turns errand-running into leisure.
Last week, we did litter picks in a couple of parks as part of the local green spaces group. I was dreading it: My mobility is so much worse right now than it was a year ago that I couldn’t work out how I was going to get around and was miserable thinking I would end up sitting in a heap for the whole thing- but it turned out I can hook a binbag onto my handlebars and use a litter picker without getting off the bike, which made the whole thing much more fun than I expected! Fortunately, my tandem partner is perfectly capable of getting herself around on foot- litter picking with two on the bike wouldn’t have worked. Litter picking on pneumatic tyres meant getting into bramble patches was not an option- but I have a new pop-up stool which allowed me to sit regally at the top of a bank for the brambly sections, bossing people about –or, more diplomatically, being supportive, supervising the children and handing out binbags.
Going green in Derby
Over the winter, we planted thousands of trees and bulbs in green spaces around Derby. I’m a trustee for Trees for Derby – which started before I got so many issues – and I still sometimes end up as an organiser for sessions. This is realistically not going to work long term since sticky clay soil and back pain are a really bad combination, but it turned out kneeling in waterproofs on a verge sticking in crocuses was still doable. Thanks to a kind member of the council’s grounds maintenance team and some enthusiastic local residents there have been new flowers blossoming in all sorts of places since February. And the local Cubs and school students were not only excellent at planting trees, but they were also remarkably good at fishing the missing feet of my crutches back out of the mud…
Getting further afield is still difficult: Tandems are too big to take on walks, so I’m getting an e-conversion kit for a second-hand folding bike. I’ve also just ordered my first wheelchair and am ridiculously excited about being able to sort the laundry AND make dinner without having to lie down in between! I’m hoping the wheelchair will make walks longer than a couple of hundred metres workable again, even in cycle-unfriendly places. I wonder- does Aldi count as a fun family outing?
I do need to mention a couple of really massive elephants in the accessible green space, though. One is called Money. Another is called Support.
Getting out and about for me needs lots of both. We’re fortunate- we have the finances and the family help that mean we can manage. Many disabled people don’t. It’s completely unfair and means people with impairments end up stuck alone at home when they just need just a bit of help to get out. I suggest having a look at these two websites to check for advice:
- Turn2us that provides practical help to people who are struggling financially
- Inclusion London guide to help with energy costs
Our e-tandem is my main mobility aid and main mode of transport. Accessible cycles aren’t cheap, to say the least. Cycle prices have gone way up in the last few years, so replacing our tandem and all its bits would be hideously expensive. Locking it up on badly designed bike racks is pretty nerve-wracking. Stands that don’t fit our (really big) secure D-lock because some planner thought fat curvy tube designs, or some intricate knot of steel looked nicer than simple Sheffield stands particularly get my goat: I don’t want our tandem stolen because only easily cut cables fit the cycle stands provided! And don’t get me started on the “motorcycle” barriers that block access to many traffic-free trails, meaning I’d need to bring along an able-bodied person to lift our bike onto most of the best cycle paths.
All those winter planting sessions? What people saw was the daft cheery person losing bits of her crutches. They didn’t see that dinner for the next week was either made by the children or was beans on toast every night. They didn’t see that I had to hit the concentration-mangling painkillers pretty hard for quite a while, or that I had to pretty much lie down for days on end after hobbling from the car park to the tree-planting site- and it’s not like I was pushing the wheelbarrows or carrying anything. They didn’t see how tiring the guilt of not knowing how reliable I can be gets. They didn’t see that if you get cold when you can’t move around to get warm, it’s utterly miserable and painful. Which is why I wear enough layers that I look like the Michelin Man for most of the year.
I’m pretty new to this level of impairment: For two decades, doing loads of exercise kept my back pain to manageable levels and meant I was very, very fit and active. For the last two years, that technique has spectacularly failed. Doing the kinds of things we used to do is probably never going to be possible- but I think we’re getting towards a workable new normal.
Of course, our new normal would work a whole lot better if there was a lot more information out there about access to all sorts of places, so we could juggle our family’s combination of autism, learning disabilities, ADHD and arthritis and decide if we can manage going to a particular place… and if new green space and active travel infrastructure was consistently built to design guidance standards. Again, I feel lucky: I can- sort-of- briefly manage most physical things that an able-bodied person can. I’ll just pay for it later. That means I rarely get completely stuck, so I can choose to take risks with outings that a more physically disabled person probably couldn’t.
But that’s enough of that. Following a good session planting flowers in another unloved little space a couple of weeks ago, it’s time for us to go and spring clean a gorgeous old walled garden near one of our local parks. Even if all I can do is sit holding a trowel in a meaningful way and give people cake, helping make this inner-city area greener and nicer for everyone here is something I love being part of.
To the unicorn-mobile!