Live your potential

Still waters

I've just returned from two days of sailing. I feel as if I've been away for a week. I lose all sense of time when I'm on water. Time stops. It becomes meaningless. Perhaps it's to do with the endless horizon. Or because I feel utterly embraced by the elements.

I was on the Spirit of Scott Bader again, the accessible catamaran owned by the Disabled Sailing Association. We sailed from Portsmouth to the Isle of Wight, the Royal Southampton Yacht Club at the mouth of the Beaulieu river, then back again. Sleeping onboard was pure bliss. Silence, other than the sound of rigging, seagulls, water against the hull. Helming with full sails at ten knots was exhilarating.

There were only four of us: skipper, crew and one other guest who'd had a stroke a year ago. We talked of loss, of dependence, of changing identity. I was reminded to be grateful for a stable condition: one of the side-effects of stroke is epilepsy, unpredictable and shocking.

If I didn't have responsibilities, children, I'd go to sea. It's where I feel most calm. I'm with Tennyson:

Come, my friends,
'Tis not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.

Jazz Warrior

  Last night, another attack of spontaneity. I drove to Marlborough in search of music, knowing that the Jazz Festival was on. No idea about access. No idea about tickets. No idea about the programme. What's to stop me?

When I get to Marlborough, there's no signal for my phone so I can't find any information. A record shop I know is open, and they point me in the direction of the box office. There are 'stroller' tickets available, giving entry to all venues. "We don't have concessions but you'll be given premier treatment". "Are the venues accessible? I don't want to be paying for music I can't get to". "Yes, most are". We agree a compromise price and I set off to discover what's on, noting the statement in the programme: "Most venues present little difficulty for disabled access. Please call the Ticket Office to find out precise details". Er, how? And will the ticket office be open? There are 21 different places I could go. Wouldn't it be easier to have a short summary in the programme?

Oh well. I head off to the nearest venue, down a hill, to find a band in a near empty tent who play a song in celebration of the M4 motorway. Great start! Then off to find the National Youth Jazz Orchestra, down another hill, forced into the road by the very uneven pavement. Past a venue with five steps. I won't be going in there then. The Fire Station is empty of fire engines, full of big band sound. Fab. Drop into another space, navigating cautiously through potholes. Back up the hill, across to the Town Hall. Big step to get over for the Tony Kofi Quartet. Thank you, Mr Steward, for your help. Perhaps that's my premier treatment.

I'm getting weary and glad it's light enough to me to push along the flat road to another venue without being run over. It's easy to get in, but the music is up a flight of fifteen stairs. Enough already. One more attempt. No, it's a pub with steps. Home time.

I'm not surprised to see no other wheelchair users. Marlborough's an old town (it's mentioned in the Domesday Book) and full of old buildings: inevitably, it's going to be hard, if not impossible, to ensure access. But the Festival could take a few simple measures to make the experience less exhausting and perhaps more welcoming: have access details in the programme; have signposting to show alternative (accessible) entrances; train stewards to know when to offer help; offer concessions... Still, I loved my evening of unexpected music and new aural experiences. And I'll enjoy it even more next year if the organisers act on the suggestions I'm going to share with them.

Heart of darkness

I was briefly at Tate Modern last week so went to see Miroslaw Balka's installation in the Turbine Hall, "How It Is". It's the first time I've been to the Tate with wheels so it was an unusual experience. I'd heard about the secret parking round the back so I called with half an hour's notice expecting nothing. But I get put through to security who say that there's a space available, that they'd book it for me, that I should just buzz when I arrive. Perfect. The parking takes you to the staff entrance and after being guided through the maze to Tate itself, you're given a key that will bring you back. I wonder if I'm going to get lost: I'm told the return journey starts from another door and involves long corridors.

I say I'd like to go to see the installation. It's suggested that I catch "the car" since the entrance ramp is steep. Why not? I'm always keen on new experiences and as three staff crowded round, I thought this would certainly be different. One had never driven the vehicle before. Another was a manager. The third was the driver but was going to walk in front to make sure people got out the way. I was loaded on, strapped in then driven slowly through the gallery. I felt as if I was in the PopeMobile - headlights and beeps and stares.

However, beeps and headlights don't really fit with the aesthetic of Miroslaw Balka. The installation, an enormous container, is dark inside (though not pitch black, as I was expecting) - and the vehicle headlights sweeping across the interior don't seem in character. Nor do the warning beeps chime with the stated aim of silence. My ramp is lowered and after much clanking and removal of seat belts, I'm eased out to explore. I'm disappointed. Even without headlights, the container is surprisingly light and noisy. Not much of a chance to experience the sensation of darkness with a community of strangers.

I decide to leave without transport and ask for help to guide me down the very steep ramp. As I exit, another staff member is surprised that I was driven. He says I should have insisted I ask to be pushed up the slope. I'm not sure: I feel uneasy at the idea, but on reflection decide that it's just the same as asking any stranger for assistance.

I'm glad I've been inside How It Is (especially with the transport excitement) but unlike some of the other Turbine Hall installations - the Weather Project in particular - I won't be recommending that friends visit. But I will suggest that other wheelchair users have a go at freewheeling down the main entrance slope. It's fantastic!

The Three Guvnors

Despite wind, rain and mud we finished the 3km cross-country run. It was hard work and I wouldn't have made it without the help of my fellow hospital governors. I fell three times as the front casters got caught in mud or holes, but with plenty of soldiers around, getting back up was pretty easy and I don't seem to have broken anything. There was a great turnout and the cheering for us at the finish was wonderful. Lots of press interest and photos (I loved the pre-race publicity in the Gazette and Herald - "Devizes dad will push himself to the limit") - good for the hospital. And if you haven't sponsored me because you weren't sure whether I'd finish, well, now's your chance: http://www.justgiving.com/Andrew-Farrow

The Royal Touch

I wore a double hat of ex-patient and current governor to meet HRH the Earl of Wessex last week at the celebration of the 25th anniversary of the Salisbury Spinal Unit. Given my generally blasé attitude, I was bemused to find myself surprisingly excited to meet a real Prince.

But what really interests me about the Royals is the wider purpose they can serve. They add credibility and publicity to institutions. There were a fair few reporters around and in this age of "choose and book", Salisbury Hospital needs to keep itself in the public eye. Edward's visit will gain a few column inches and perhaps more patients will opt to come to Salisbury rather than another nearby hospital. Every little helps.

And there's always the feel-good factor. People were thrilled to meet the Prince and were delighted he'd come. His presence (and enthusiasm) was recognition for and endorsement of all the extraordinary work staff have done over the past twenty five years to make the Spinal Unit what it is today. I think they deserve every single ounce of such recognition. It's amazing to think that when the Spinal Unit opened 25 years ago, the alternative specialist Units were hundreds of miles away. Even now, Salisbury has a catchment of eleven million for spinal cord injury. Provision is still limited, and the specialisms that Salisbury offers - especially the Wessex Rehab Workshop where you can build things at the same time as healing - are even more rare.

Stupendous Superdrug suffering

A while ago I wrote about my experiences with Superdrug and the impressive changes they have made to their access. Now that I've complained about them, I feel obliged to go there more often. I was shopping there today. It's been a wet and windy day and this seems to have defeated the store: I was disappointed to notice that only one of the double doors was open and the supposedly effective superheaters were not on. Luckily, the closed door was light enough to kick open with my feet (yes I know Ms OT, I know I'm not meant to use my feet but it's so much easier).

I asked about the doors. "The wooden doorstop keeps being stolen. That's Devizes for you". Really? It was a plain block of wood, nothing like as quirky as the one in the picture. For heaven's sake! "And the superheaters don't keep the shop warm enough. Nor do they stop the rain coming in. Everyone gets cold and wet if they're shopping near the entrance". Hmmm. Perhaps not such an impressive solution after all...

Anyone for tennis?

In one of my many previous lives, I worked at the Millennium Commission. I ran the Millennium Awards Fellowship, a network of extraordinary people who undertook community projects. As part of our legacy, we gave an endowment of £100 million to a new organisation called UnLtd to carry on doing the same work.

So I was thrilled to see that my past is catching up with my present. One of the UnLtd Award winners, Gary Marlow - an experienced tennis coach - "wants to make the game more inclusive for people with disabilities. His project will provide tennis coaching opportunities and aims to be one of the first fully accessible tennis programmes within the UK". Fab!

For a summary of Gary's project, visit his project page on the UnLtd website.

C-Words at the Arnolfini

A friend is curating an exhibition at the Arnolfini, a wonderful gallery in Bristol. I've known the space for years, one particularly fond memory being a room of musical sculptures that you could touch or blow or move to create beautiful sounds. The new exhibition is a brave departure for the Arnolfini: several spaces have given over to PLATFORM. And PLATFORM is not your average, safe, arts organisation: "PLATFORM works across disciplines for social and ecological justice. It combines the transformatory power of art with the tangible goals of campaigning, the rigour of in-depth research with the vision to promote alternative futures". Run with collaborators, PLATFORM's show is called "C Words: Carbon, Climate, Capital, Culture, a major exhibition and season of 50 events in the run-up to COP 15" - the UN Climate Change Conference in Copenhagen.

I went to the opening day of talks and discussions, with participants explaining their ideas and beliefs and what they intended to do at the Arnolfini. It was fabulous. By the end my brain was humming with thoughts and insights. The day made me realise how I miss being stretched - how I've not been intellectually stretched for years now - and has got me thinking about how I can change that (Open University anyone?).

The other excitement of the day was the space itself. It's right beside the river and its new lottery-funded facilities boded well for access. I called ahead - unusually for me - to find out about parking and was told that I could park directly outside the gallery, all day, for free. I just had to ring when I reached the locked barrier and someone would let me in. Wow! Access was as good as I'd hoped and the staff took things to another level. I duly arrived at the gate, called, was shown in and offered help across the beautiful but awkward (and no doubt listed) cobbles. The shop offered me bags to carry my new purchases on the back of my chair. The cafe carried my delicious lunch outside for me so I could sit outside. They were exceptional. The building itself was easy to get through, level floors, lifts, low bar... Bliss.

Two moments stand out. One was meeting someone who I've not seen for over twenty years. His first words were "you've not changed at all". Hug-worthy. The other was exploring what I thought was the skeleton of a yurt but turned out to be a geo-dome made of wooden branches no more than several inches thick. "Is it accessible?", asked the maker? Now that's a first...

Overstaying my welcome

I get very tired when driving. I generally don't have enough sleep and the driving itself can weary me. I often pull over to lay-bys and lie over the passenger seat for a doze. The car's well equipped for its many roles as bedroom, dining room and meeting space: in the former, I have a pillow and card that says "I'm paralysed and sleeping. Please do not wake me". This card has been added to the facilities because of the number of people who anxiously tap on the window to make sure I'm not dead. Touching but tedious.

Driving back from the Lakes was no exception. After a week of intense exercise (it obviously made a difference to my physique: a number of people have commented on how much bigger my arms are. Really? After a week? Is that possible?) - after such a week I was especially tired when I pulled into Tamworth services. I must have slept for well over an hour, got out for a meal and then carried on. Refreshed and re-invigorated: a happy driver once more. So the happy driver was confused when a few weeks later he received an official brown envelope with "fixed penalty notice" printed in bold letters on the back. Have I been speeding (er, yes, but not this time). Did I park illegally in Sheffield? (no). It turns out I was being fined for oversleeping. I'd failed to read the small print at the Tamworth services that said you're allowed to park for free for up to two hours but after that, an £8 charge had to be paid. I'd not paid it, so was being served with an £80 fine (reduced to £50 if paid within ten days). Oh dear. There were the times I had arrived and departed. And there was even "photographic evidence". Could be interesting. Me, asleep, on camera.

I thought it would make a good story in the local news: "paralysed man shocked by parking fine outrage". But before writing to the media, I thought I'd fall on the mercy of the operator, CP Plus. I explained the situation and asked them to consider waiving the fine. And to their credit, they did: "in the circumstances, we have decided not to proceed with this claim". Let's hear it for a flexible company (and a £50 saving)!

The Leopold Hotel, Sheffield

It's about 350 miles from Keswick to Devizes and I didn't fancy driving a long way at night. So on my way back from sailing, I stopped off in Sheffield. It gave me a chance to wander about in the Peak District, a tamer version of the Lakes but still somewhere I've had some great walks and good memories. And I stayed at the Leopold Hotel, "Sheffield's first boutique hotel". It opened in 2007 after several years of renovations. It's built on the former site of a Grade II listed Boys Grammar School and still has some of the original touches. It's individual, central, about the same price as a Holiday Inn and wonderfully accessible. There are fold-down shower seats, bathrobes, masses of space, good height beds, wonderful room service. Fabulous. I'm tempted to go back to Sheffield and explore the city just for an excuse to stay there again.