I was taking a trip to my local shop yesterday when it struck me as a great post subject. Going out is a thing the vast majority of people do with barely a thought – granted, if you were going out for cocktails with friends you might talk about when and where to meet, who is sharing a taxi with who, the merits of the drunken way-home kebab. Let’s face it – it *will* end in shots and Jagerbombs as the sun is rising – five hours after you planned to be snuggled up in bed. I wish my life could be that carefree.
A trip out with me generally begins 2 or 3 weeks before the actual event. This is the planning stage where I decide where I want to go and when. Then you look on the website and read reviews discussing accessibility to make sure it will be worth the journey but, because disabled access doesn’t seem cool enough to put on a public platform, this often means a long and frustrating phone call to ask the staff for access information. When they don’t have a clue or umm and ahh too much over the question this me a pre-visit visit to see if their idea of accessibility bears any resemblance to mine. If I think I can cope with whatever facilities a certain place has then I can work out how long I can stay there and not go one minute over my allotted time because I have booked care for this visit and don’t have the option of saying ‘I’m having fun so I’ll stay a bit longer’. The next stage is to spend some quality time with GoogleMaps working out how long the journeys there and back will take, allowing for traffic, diversions, finding decent parking – issues I somehow need to be able to predict (all disabled people are psychic dont’cha know?) and fit this into the time I have allowed myself. Of course, if I am using an assistant to facilitate my trip, I have to hope I can get somebody to work those times and never be disappointed if it happens to be inconvenient or their ex works in a pub I want to go to and they refuse.
Planning stage over. Preparing for the trip. Now I’m not talking pre-drinking, finding the GHDs and trying on outfits – I wear whatever is practical and comfortable – no functional, stylish clothes for cripples, don’t be ridiculous. First, there’s the anxious wait to find out if your assistant for the day is actually going to turn up on time or at all; more hit and miss with agencies but a concern with everybody when you’re thoroughly reliant on them. Once they have arrived, ten minutes oe so is spent getting ready to leave which involves a quick trip to the toilet to make sure you’re completely empty because you’re still not convinced of the toilet situation. The struggle of getting a coat on when you cannot stand to straighten it, zip it or have it covering anything lower than belly button height. Instead of a cute clutch or elegant handbag I carry a purple, skull-studded rucksack in which to fit all the disabled person’s essential – a towel to clean dirty wheels, RADAR key, blue parking badges, tissues and wet wipes for when the accessible toilet is invariably out of paper, straws so I can actually drink without drowning everyone in Diet Coke, bingo dabber in case of emergency bingo, deck of cards for lulls in the ever-scintillating conversation. Another five minutes or more whilst I get helped into the car and my assistant fumbles my wheelchair (sometimes successfully) into the boot.
Then we’re finally on our way out. Whether the journey or my time out is enjoyable on any level depends largely on who I’m with… my fiancé, Laurence, who’s kind of stuck with me and my crazy, or an assistant who is being paid to take me out but not to make sure I enjoy it. The few friends I have rarely want to accompany me because they are not willing to work to the schedule I have always had to abide by. Some have complicated lives now so I can excuse that but this has been my entire life, and even as a teen or 20-something, nobody wanted to put the effort in if they weren’t getting anything out of it. I mean, they had other friends, I was no loss. But I’m not bitter. After a few hours of keeping one eye on my watch to ensure I don’t do anything foolish like have that extra drink, it’s time to go home. So the preparing to go out stage starts all over again. When I get home, the caring of my paid assistant usually stops immediately and my needs become the responsibility of my partner or family once I have been stripped of my coat and bag. A rare few will stay to see if I want something to eat, help to move, even after their allotted time and these are the ones to keep. But Laurence or my parents, if they weren’t out with me anyway, would then have to make sure I was safe and sorted. All of this gets repeated the next time I want to go somewhere.
It’s much more of an ordeal that the ‘nice time out’ most assistants think they are giving me. I cannot relax or properly enjoy myself with one eye on the clock and wondering if the person with you is regretting taking the job.