Project ‘Get out of the house 2017’ #wheelygood

You know those grey February days when you think it should be spring but it just isn’t quite yet? When the deliciousness of summer beach picnics and lounging about in the park has faded just a bit too far round the memory corner and your feet have forgotten what it means to be flip-flop ready?

So, for me, that’s today in a nutshell. Sat under a blanket for the third day running in the inhospitable company of a vile and flu-like thing, I’m going more than a little four-wall-crazy. And when daytime TV becomes intolerable the internet is my friend between naps, nose blows and making irritating requests for water and ‘something spicy and scratchy’ to eat.

So I’m planning some family days out.

This year we promised ourselves we would do better at getting out and about to explore the beautiful part of the country we live in. Nestled in south east Cornwall, we have all of not just Cornwall but also Devon right here on our doorsteps but we have fallen into routines and habits that mean we often visit the same places. Partly because we like them but also because for us they are ‘safe’ options.

We know that the Eden Project has a Changing Places loo with a bench and a hoist so we can change Orange and that the whole place is a wheelchair accessible, sensory paradise where we can always get something delicious, allergy free and mashable for Orange to eat. It’s an easy, enjoyable and inspiring day out for all of us.

And the wine is good. So it’s always a win.

Out late and totally winning at life at the Eden Project

We know that we can get an all-terrain wheelchair onto any of the beaches in St Ives, and that the food options there are top notch but that the disabled parking only lasts three hours and the alternative, the train in and out from Lelant, isn’t wheelchair accessible.

We know we can easily get a wheelchair round the National Maritime Museum in Falmouth then go across the (flat) square and eat lobster at Rick Stein, or visit the National Marine Aquarium in Plymouth and dine like kings at Rockfish afterwards but, while all of these venues have plenty of room to install one, there is no Changing Places loo at, or even near, any of them.

It’s a car boot job or filthy floor of the ‘disabled loo’ (is that mud or poo, water or wee I’m kneeling in today?) to change the boy, risking basic hygiene, spines and dignity as we go.

We know that any beach with a slipway is our friend for a sunny day out with a picnic, and some beautiful wheelchair friendly walks can be found on the moors to either side of us but the same changing challenges abound.

Wet through, attempting a change on the back seat of the car in a public car park

Sometimes, the sheer planning of a day out with Orange means we don’t do it at all. Because family life can be pretty exhausting as it is, and honestly it’s often too much of a bore to try to figure out if a new place we have never been before, a new walk, attraction or picnic spot might be accessible enough for us.

Strangely, access statements don’t seem to contain the information you need if you are going out and about with a disabled child who is 100% reliant on a wheelchair.

We’ve had some pretty dire experiences on days out where the accessibility has not just been an afterthought but where there has been no thought at all.

It was on a ‘challenging’ family day out to Cotehele, a local National Trust property, just before Christmas when I figured that since over half a million tourists visit the south west every summer and 2% of those are likely to be wheelchair users, that’s over 10,000 people a year who  are being poorly catered for.

10,000 people a year. Most of whom are probably here on holiday with their families, because wheelchair users don’t travel alone any more frequently than ambulant folk do.

So that’s actually 30,000-40,000 people a year visiting Devon or Cornwall who need better disability provision, and clear information about that provision, so they can enjoy a family day out.

Even with the distinct advantage of living in the region and knowing where to look, planning a family day out and being confident we will have everything Orange needs is a military exercise.

Just last week, I was planning a walk on Dartmoor and had to visit six or seven different websites just to find an accessible walk, nearby accessible parking, whether there was a Changing Places loo (there wasn’t), and whether there was an accessible child-friendly pub/restaurant/cafe anywhere within wheelchair striking distance that would serve something Orange could eat and that we would all enjoy. That wasn’t booked three weeks in advance.

I’m ashamed to say, I gave up. We stayed at home.

We can’t keep doing that, though. Because venues and owners of public facilities simply won’t be persuaded to install accessible facilities if they don’t see the need. And they won’t see the need if we all stay at home.

I know the National Trust staff had never even thought about the negative impact of keeping their accessible entrance and exit at Cotehele under padlock and key (that you had to go into an inaccessible building and join a queue to request to be unlocked) before we pointed out to them how exclusionary that was.

Guess where reception is? Up some steps, ta da!

I filmed it and everything, because I had total National Trust hives by then and really needed to leave… 

Trying to leave Cotehele in a wheelchair

But fresh in anger we made a promise to ourselves. That we would go out and about with Orange in his wheelchair in a much more intrepid way than we have. Because we need to get out and about for our health and wellbeing. It’s a fundamental need, as well as a nice thing to do.

I also made a promise that I would use this blog to start to build a useful resource for people who might be planning a holiday or a visit to Devon or Cornwall and who are finding it hard, like we do, to find places to go on wheels. With information that’s more user friendly than a tick box access statement. A little mini guide to getting out and about as a family with a wheelchair user in the south west.

It will start small but, since we’re never, ever moving house again (not just because we love it here but also because disabled adaptations will see to it that we can’t, but that’s another tale), I figured that over the years it might build into something really handy for people.

Having sunk to a new flu-based low of watching Parliament Live for two days now, this morning I stumbled across the #disabilityinquiry in which Changing Places loos were a hot topic.

It reminded me of our promise to get out and about with Orange, to go to new places and to start to build a place online where families can find genuinely useful accessibility info about our beautiful part of the country.

So I suppose this is the distinctly low key launch of what I am going to call #wheelygood. Or not. Watch this space for our first trip out, once this flu-vile thing-bug interloper buggers off.

Orange This Way will be taking part in Disabled Access Day, 10th-12th March 2017

 

A very public (in)convenience

This post first appeared as a guest post on the Cardew Physio & Performance blog as part of a series of blog posts promoting awareness of continence issues during National Continence Week.

I don’t know about you, but one of the reasons I’m not at Glastonbury this weekend with all the other mud-coated revellers is because I can’t quite get my head around the festival loo situation. Queuing up in the rain to use a long drop with no toilet paper is enough to put me right off going to Glastonbury, even with the most star-studded of line ups or luxury boutique camping on offer.

But can you imagine if there were no toilets at Glastonbury at all? Or if there were toilets that were only accessible to people over the height of 6ft 5? Or that would collapse if anyone over 10 stone entered the cubicle? There would be uproar among the hundreds of thousands of Glasto fans.

Or, quite simply, people wouldn’t go.

We have become used to toilet facilities being available to us pretty much wherever we go in the UK. Public toilets began being introduced in London in 1851 and since then have become a familiar feature of cities, towns, villages, attractions, public buildings and restaurants across the country.

It would be unthinkable to go for a day out in a public place or to a major event and there not be a toilet available, right? Wouldn’t it?

Unfortunately for some of the most vulnerable people in our society this is not the case. Until the advent of the Changing Places campaign in 2006 there were no toilets available in the whole of the UK for the ¼ million people who cannot use standard or typical accessible/disabled toilets.

According to Changing Places, this includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, severe physical disabilities as well as some older people. A quarter of a million people.

This quarter of a million includes my son, Lawrence, who is five years old and wears a pad because his disabilities mean he does not have adequate control over his own toileting, or the ability to transfer to a toilet, even a ‘disabled’ one. He needs to be changed by a carer, regularly, throughout the day.

When he was tiny, we used the baby changing facilities like every other parent. Luckily, these have been installed in most public places and restaurants across the country because managers have recognised that families with young children are an important and valuable part of their customer base who have money to spend.

Unfortunately the same is not yet true for severely disabled people. A quarter of a million people. And their families.

In the vast majority of public places in the UK, the place where severely disabled people get changed by their carer is the toilet floor of the disabled loo. The filthy, often urine-soaked and dirty, toilet floor. A place that most people would only want the soles of their shoes to touch.

This is the now the reality we face with our little boy. The same reality faced by vulnerable, severely disabled people and their carers across the country. It is not safe. It is not dignified. It is not kind. It is often the reason why severely disabled people and their families are limited to local short trips out only, or why they very rarely leave the house at all. For many carers, lifting a disabled teenager or adult from a wheelchair onto the floor of a toilet and back again would quite simply be impossible, never mind the filth.

What people like our little boy need is a toilet that can be used in safety and comfort for both him and for us as his carers, which has more space than a conventional disabled loo and the right equipment – including an adult sized height adjustable changing bench and a hoist.

Changing Places have made great progress on campaigning for suitable toilet facilities for severely disabled people over the last 10 years, but there are still less than 1,000 across the whole of the UK. In Cornwall, where we live, there are only 10 Changing Places toilets in the whole of the county.

I am delighted to say that this will soon become 11, as a result of a local parent the new (and fabulous) Cornwall Services on the A30 has understood the need for these facilities and is fitting one as I type.

I am, though, sorely disappointed to see that in all the £17.6 million revamp of the Hall for Cornwall, there are currently no plans to install a Changing Places toilet, despite vocal campaigning from parent carer and disability groups.

John Lewis (a favourite retailer of mine until last week) responded to Changing Places a few days ago to say that they ‘didn’t have space’ to fit a Changing Places toilet in one of their flagship stores that has over 70,000 square footage of retail space. Imagine if they said they ‘didn’t have space’ to fit regular toilets, or if they said they didn’t have space for a café, or a shoe department? Unthinkable.

Already, even with Lawrence being quite small, we are finding ourselves planning family days out and long journeys around where there is a Changing Places toilet. We love the Eden Project, because they have a fabulous Changing Places loo, as do the Life Centre and Drakes Circus shopping centre in Plymouth. But beyond that, it’s pretty sparse. What will we do when we can no longer lift him ourselves and when we get sick of carrying around a mat soaked in urine from the toilet floor?

We will be isolated.

You see, it’s not just the person with disabilities who suffers when there is no toilet they can use. The lack of Changing Places facilities isolates entire families too. Families who have money to spend at your restaurant, shop, theme park, hotel or festival, just like everybody else.

So please, if you are a restaurant owner, a hotel, shopping centre or theme park manager, or a local authority public convenience planning officer (do they even exist?) then please, please fit a Changing Places toilet. Not only will you see the investment repay itself with new loyal customers but you will be changing lives.

Oh, and by the way? If you’re heading to Glastonbury this weekend and one of your party is severely disabled, you’ll be thrilled to hear that the festival has a Changing Places toilet in the Spring Ground Accessible Campsite. For everyone else, if you’re not keen on the long drops, you might want to check out the compost loos… Good luck 😉