It's been a long, long week. It was always a bit of an ambitious plan - after 6 months of pyjamas and barely venturing out, driving to Birmingham alone to go to Naidex, the UK's biggest disability exhibition was optimistic at best.
Naidex was an interesting experience. It's the first year I've been, and I thought it would be a good opportunity to look at wheelchairs as well as meeting up with friends. The looking at wheelchairs bit was disappointing but meeting up with bloggers and tweeters I've known online for years was absolutely wonderful. I tried to explain how special it is to be in a group of women my own age who are all disabled to my friends that evening, that it was worth all the exhaustion to have that experience once in a while but I'm not sure it translated through the slurring and drooling.
The exhibition itself was really disappointing. It was extremely difficult to navigate around the exhibits, it wasn't laid out like a supermarket where you can follow a logical pattern and know you've been past all the choices, but on a grid pattern that wasn't quite a grid and didn't make any sense. Nor was there any attempt to put signage at wheelchair height, so by the end of the day my spine was traumatised from all the pressure tipping my head back to see things causes. Some of the stands were brilliantly accessible, others not so much. I was really excited to spot a stand displaying hot tubs/spa stuff as like many bendy people I'm a sucker for anything where hot water and bubbles are involved. However, this was my absolute favourite access fail as you had to climb up on a large step and peer over a wall to see what was presumably hot water and bubbles. I can't comment because I couldn't access it. Other stands were elevated slightly from the floor, the better ones had put in a thingummyjig I don't know the name for that means not having to try to get up a 2 inch gap in a wheelchair, but alot had not bothered to do so. Naidex is primarily aimed at professionals working in disability related fields rather than disabled people ourselves...so it was also packed with walkers who appeared never to have encountered one wheelchair user, let alone hundreds and didn't know they were supposed to look where they were going.
Some exhibitors were clearly aiming to interact more with disabled people than professionals and they were very impressive. I was fascinated by the specialist scooter storage sheds, which cost approximately £1600, and the men running the stand who got extra points for pointing out they can be applied for with a disabled facilities grant. The real brownie points came for their honesty in explaining the postcode lottery that goes with DFG's; apparently they go through without an issue in the south of the country, but once you're further north than Oxford not a chance. When I said I would need to apply in Wirral the guy just laughed.
I had a look at some wheelchairs, but ended up heading back to the Midshires stand to say hello to James Barnfield who did my powerchair assessment. Midshires were recommended to me by a friend on twitter as having given her good service without any pressure to buy. This was confirmed at Naidex as they got the issues with the battery on her powerchair sorted immediately, and unlike many companies it's fully covered by the warranty so won't cost her anything extra. The assessment James did surpassed my expectations in its detail and organisation, and although I looked at other powerchairs I have yet to see a model I like more in looks or function than the one he suggested. The nice director of Midshires got me a cup of tea, and after a chat off I went to find the trike stall a twitter follower had recommended. I'd like to apologise to the ever so nice man on the trike stall who didn't bat an eyelid when I tipped a full cup of tea all over his stand. As Stefania from Brandon Trust commented, this tea throwing is becoming such a habit its probably time to get a little sign put on my scooter saying "Do not feed tea" in a gremlin style!
The stall which most confused me was the one run by Disability Now. Disability Now is one of the best known disability magazines, funded by Scope, and I left their stand feeling deeply uncomfortable about the attitudes Scope were reinforcing at Naidex. Unlike other stands which were there to inform and educate, Disability Now had a pile of their magazines and a raffle to raise funds for Scope. That was it. No information about disabled people working as journalists, what the remit for DN is or anything except a confirmation to all the disabled people and professionals attending Naidex that we disableds are to be pitied and fundraised for. If this were a small, local charity I would have found fundraising entirely appropriate but from the UK's biggest and richest disability charity I found it shaming and depressing, especially at a time when promoting disabled people into employment is vital.
This contrasted sharply with many of the other stands and disabled people I met. There was a wheelchair using basketball coach who I got chatting too, his business is going into schools to raise disability awareness and teaching basketball. Empowering and educating. Pool Pods were also really impressive. Invented by a team of charming engineering types the pool pod is a system to enable wheelchair users to access a swimming pool without need for structural work. There were all sorts of blingy off road wheelchairs being displayed to show that those disabled people who can afford it can go anywhere, stands encouraging low cost disabled skiing, pretty walking sticks and all manner of innovative thinking. Except from Scope who gave the distinct impression they were operating in a different century.
One of the most exciting exhibits was the exo-skeleton suit that enables paralysed people to walk again.I stared, well frankly gawped at that...which definitely wasn't related to the relative attractiveness of the guys who'd built and were demonstrating it. Honest it wasn't. Nor was it anything to do with the surreal conversation about feet and penises. It was all down to the suit. Ahem.
After all that tea throwing and penis discussing it was time for the most important part of the day...lunch! It was wonderful to be in a place where a group of young women using mobility aids didn't attract any attention and to experience the understanding and support born of shared experience we're all able to offer each other. It was over all too soon, and conscious of limited spoons we all headed back off to have another quick look at the exhibits before going home.
Although we were only at Naidex for a few hours in a relatively accessible environment everyone paid a high price for their fun. My price was being so exhausted I went into 'marionette mode', jerking, stumbling and unable to move independently. I was collapsing to the point I couldn't speak or even respond to simple instructions and although dinner was brought to me I wasn't able to eat it. Later in the evening I had to literally be fed, complete with a soundtrack of chuffing train noises to lighten the mood! I was so knackered I couldn't even laugh which was probably for the best as I'd just have choked.
It was fantastic to meet up with so many friends and well worth paying such a high price, but it did make me wonder even more about the government's welfare 'reforms' aimed at getting disabled people into work. All of us who got together are educated, articulate, determined young women who would love to work. But we're also all so poorly that we'll need a whole week to recover from a few hours out. As one person astutely commented;
"All I need is to stop relapse/remit, give up A&E addiction (epilepsy), speak/type/think/stay awake properly. Easy. Go on, gizza job. Gizza"