Christmas shopping with my mother as a teenager in the 1980s: a fraught affair, both of us in our default roles. Me, disabled, a wheelchair user and mum, my primary carer. There’s no social care, no support. My mum, a cheerful, seldom sulky woman, always did her best for me but we got stuck. Me feeling the angst of obligation, seamed with guilt, and my mum gritty in her duty to my needs.
Our shopping relationship attained new levels of mutual frustration at Christmas. Especially when, bitten by the punk revolution, I took to presenting myself in a defiance of multicoloured hair extensions, goth makeup and a preponderance of black. At one point, long-suffering mummy insisted on walking behind me rather than with me, as I cruised forward in my mobility scooter.
Christmas at home in the council estate ghetto of the otherwise well-heeled Chalfonts in Buckinghamshire was not exactly one of shiny baubles and carols round the gas fire. As I grew older I retained a sense of missing out on something even though, post-punk, I espoused a hatred of Christmas and all its consumerist horror. Yet, always contrary, this was the time of my love affair with the mail order catalogue – Marshall Ward, Littlewoods, Ace. I indulged my urge to buy and not worry about paying immediately.
At a time when I had no life and lived in a downstairs bedroom, with the mother/daughter; carer/cared-for roles unchanging, the rebel within me was fighting to find a way out. Meanwhile, I assuaged my conscience, buying Christmas gifts from activist groups – CND, Greenpeace, International Fund for Animal Welfare. The latter had an endless range of baby seal offerings – cute festive pressies for my only two friends. Not so cute when my cheques bounced. And mum going into a righteous silence all through the removal of the decorations.
When I managed to move to east London I had a stab at living independently. In those days, this meant literally attempting to do everything for yourself. An approach that broke down rather quickly when you consider I couldn’t wrap myself in warm clothes, let alone wrap any presents. My first serious boyfriend was no real help to the conundrum of Christmas shopping. He avoided it at all costs.
I took to buying the odd gift surreptitiously when we ventured out for food, although the game was up the year I tried to buy five sets of Snoopy stationery along with the cheese and baked beans.
Then a revelation. A change so fundamental to my Christmas shopping that I can never overestimate its impact. The arrival of Independent Living (IL), as an ideology and a new way of receiving “care” support. Started in the US, at Berkeley, University of California, by disabled students, once it crossed the Atlantic disabled activists in the UK realised it was revolutionary – that independence is about choice, control and facilitation, primarily through giving instructions to another person.
IL brought the development of the Independent Living Fund and the concept of direct payments, which enabled disabled people to manage their own needs: “What I want, when I want it.” An effort towards an equality in daily living that non-disabled people can take for granted.
Don’t get me wrong – it’s great having a personal assistant you have chosen to wash your bottom, make you a cuppa, get you out of bed. But in 1995, in my 30s, here was the ultimate. Christmas shopping in Walthamstow market with Debbie, my first true PA, recruited once my direct payment funding came through.
There are men yelling “pound-a-bowl” and “reeeeeeal Christmas trees, only a fiver!”, amid the East End hustle and bustle. And there I was, in a place where I could indulge my too-long frustrated, inner Christmas shopper – the big kid who has never browsed 100 Christmas fairies or flicked through the Christmas jumpers on 10 different stalls; choosing the very best one for mum.
Debbie came from Nottinghamshireand was living in . She was funny, immensely competent, a similar age to me and took it for granted that I would want to have choice in shopping, festive or otherwise.
On shopping trips she was my arms and legs, doing the flicking and packing the goodies into bags. That the only boundaries were ones set by myself – and my bank balance – ignited a lifelong excitement about Christmas shopping. It connected me to a sense of free adulthood, to the simple joy of choosing. When you’ve never had this for most of your developing years, it’s sweet and always will be.