Holidays with help

To make matters worse, whilst I was there, the rest of my family went on holiday. They didn’t want to (well that’s what they tell me) but my rather persuasive consultant reassured them that they deserved some respite, and so off went the Carrs to Weston Super Mare. In hindsight, I realise that I wasn’t really missing all that much - but at the time, I felt very hard done by.

During those heady hospital summers, I would dream of traveling the world or even just going to Ibiza with my gang from school - but couldn’t imagine how this would ever be achieved.

How could someone like me travel the world? I used a wheelchair. What about access? I needed 24/7 personal assistance. Who could come away with me? I was a student. How could I afford it? I had so many questions and with a lack of information and no internet to help me out, very few answers.

I decided to get around the problem of not having my own personal assistants, or funding to pay for them to accompany me, by going away on a ‘special’ group holiday for disabled people.

It turned out that the group had two over eager volunteer helpers and sixteen cripples; mostly wheelchair users. Some had communication needs but all of us required help with our ablutions.

By the time we were all up and dressed in the morning, lunch had arrived. We didn’t get out very much that week but did play a lot of bingo. I decided that I wasn’t a group holiday kinda gal.

Next I tried travelling with a non-disabled friend. We’d known each other for years and had always wanted to go on holiday together. So it was agreed that we’d each pay for ourselves and that my friend would give me a hand where necessary. For the first couple of days, the excitement and adventure of being in a foreign land kept us from noticing the cracks but, by the middle of the week, our personality differences really began to surface.

She was an early riser ... I wanted to lie in. She drank sangria ... I preferred lemonade, she liked the barman ... I was the gooseberry. We were both young and hadn’t learnt the language of compromise.

By the end of the week, I wasn’t asking for what I wanted or needed and both of us were miserable. At least it was sunny.

At university, a team of volunteers provided me with my daily assistance. I took one of them, Anna, with me when I stayed with my relatives in Canada in the summer of 1991. This worked out well; Anna helped me out and, although I had to find the money for both our flights, my cousin was providing bed and board which really helped to keep the costs down.

This was my first taste of traveling further afield and of going on holiday alone, but this time with the help I needed. I loved it. I had the taste for more and yet it also made me realise that finding someone to travel with, and the funding to pay for them, was relatively easy compared with the more difficult task of making that relationship work.

What do you do, for example, when the person who’s meant to be there to help you seems to be having more fun than you are? There were times that summer when Anna would go off for a walk along the beach, for a dip in the pool or for a game of volleyball whilst I sat there on the sidelines going nowhere with my wheels wedged in the sand. When we went to Niagara Falls, Anna wanted to stop to take pictures every few metres and to visit every single souvenir shop. I didn’t. Should I have said something to her or should I have been more tolerant? Would it have made a difference if I’d been paying her? Twenty years on, I still don’t know all the answers.

Since that first enlightening trip to Canada with Anna 19 years ago, I’ve been lucky enough to travel the world with the help of volunteers, paid personal assistants and, more recently, my partner. I’ve paid for my trips through a mixture of monies - if I travel for work then the Access to Work scheme has helped with my PA’s costs. Cash from Social Services, which exists to fund a residential care respite break, has instead paid for a holiday.

Sometimes, the only solution has been to save up, though it is a little bit hard to escape those feelings of resentment when you are forced to pay for a holiday for two because of your access needs. And it's the expense that might explain why this summer, I’ve decided to take a camping holiday in the Lake District .