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Disabled single parent: who cares?

by Lucy Sholl

20th June 2005

Lucy ShollOn New Year's Day of this year, I unexpectedly became a disabled single mother. That was according to the Benefits Agency, but then it also took six phone calls to convince them that my father isn't my ex-husband. That was disturbing.
Outside benefit world, the facts were more mundane. My mother had struggled for years to look after my younger siblings despite her chronic illness, and last year she suddenly got worse. She needed constant care, and was in such a bad state that we came to the difficult conclusion that my youngest sister Kate, who was only 11, would be better off living somewhere else. Given the sacrifices the rest of my family were making caring for my mother, I decided to offer to have her live with me.

Until then, my one-bedroom flat had been an oasis of single, boudoir living. My disability means I have to spend most of my time lying down, so I'd arranged my flat around that. It was perfectly organised so that in bad weeks I could camp in bed with my books, videos and laptop within easy reach, and in good ones I could swap my floral bedspread for tiger print, and open up my flat for all night revelry.

I now had to convert this place into a family home for three. Our other sister, who was caring for our mother during the day, would be joining Kate and I in the chaos. Three people living in two small rooms, with no bed sharing, was ambitious. But within two weeks we'd turned my lovely room into a dormitory for two, and made the little room into a dual purpose bedroom for me and an adult sitting-room for the evenings, when Kate would be in bed.

We managed to live like that for nearly ten months, and it was the most intense, extraordinary time I could have imagined. None of us knew how it was going to end, but from the beginning I made the commitment that if my mother didn't get better I would take responsibility for Kate long term. My other sister and I, and often our boyfriends too, sat up together in my little room every night, trying to get to grips with the situation, and discussing parenting techniques.

Suddenly, at the age of 25, to be in the position of mother to an 11 year old child was terrifying, and I had the added complication of my disability. Before I became disabled I'd always wanted to have children young, but as the years went by and I struggled with my pain levels and lack of mobility, I began to wonder if I'd ever be in a position to have children. All my worries were now being tested.

Of course, lots of the difficulties I'd imagined were with a baby or toddler, but if I didn't have to worry about handling Kate on my knee or pulling her back from oncoming traffic, I soon found there were a lot of other issues. If she hugged me too tightly I'd wince with pain, I could never go for walks with her, and sometimes when she got back from school I felt so exhausted that I wasn't able to contribute as energetically as I'd like to in our bitching-about-the-Spanish-teacher sessions.

I spent a lot of time worrying about the effect my disability might have on her, and going to great lengths to make sure I wasn't relying on her in any way. If she offered to go to the corner shop to get milk I'd have a battle in my head - is she offering because she thinks I'm not capable of keeping the milk supply stocked? Does she feel let down? Or does she just like going to the corner shop because it makes her feel grown up and she wants to get out of the house? In the end I accepted it was probably the latter.

I also worried about other peoples' perceptions of Kate and I when we went out. I know how horrible children can be, and the last thing I wanted was for her to be teased about my disability.

I normally use a stick, but once when we went clothes shopping I used my wheelchair. I was determined that she shouldn't push me, but when my other sister was lured off to an inaccessible Diesel store, Kate asked if she could have a go. She evidently didn't see it as an embarrassing thing to do at all, and was pleased to be entrusted with such a responsible task. For her, it was something nice we could do together. Still, I was very sensitive to the looks we were getting, and couldn't work out if their pity was of the standard 'poor wheelchair-ridden woman' type, or directed at Kate for 'having' to push me.

My paranoia wasn't helped when I unintentionally became involved with a 'Young Carers' organisation.

I'd been looking for some counselling for Kate to help her come to terms with her new situation. Her GP helpfully suggested a pizza with our father and a long walk, and as neither of these options seemed practical, or exactly what we were looking for, in desperation I rang the local Carers Centre for advice. I'd spoken to them before about my mother's difficulties, and they'd at least taken the time to listen. But I felt a bit dubious about the whole idea of having a centre devoted to carers for people with disabilities, when there didn't seem to be an equivalent for disabled people themselves.

They immediately told me they had the perfect solution: a Young Carers representative within their organisation. I tried to explain that Kate wasn't my carer, and hadn't been our mother's either, and that her unhappiness came from losing her stable home and relationship with her mother, not my disability. In fact, although my mother had been bedridden for some time, she had felt so guilty about the way this restricted Kate's life that she had managed to look after her far more than a lot of mothers would have - sorting out her books and timetable, making her lunch, even packing her PE kit every night.

But when Kate moved in with me, she didn't know how to make a cup of tea, or organise her own things for school. I encouraged her to learn how to do these things, and she was obviously beginning to enjoy feeling more independent. Annoyingly, at the Carers Centre they seemed to see this as further evidence that Kate acted as my carer. I was evidently banging my head against a brick wall.

As far as they were concerned, any child who lived with a disabled parent or guardian was a carer, and any disabled person a dependent.

I should have stopped there, but as they seemed to be the only people interested in Kate, I made an appointment for the representative to come round, having been assured the label 'young carer' wasn't going to be forced onto her. Of course, the first thing that Joan, the young woman we were sent, said was, "We think you're really special. I know you make cups of tea and things for your sister, and that's not something most children do, is it?"

To my relief, Kate seemed more confused than flattered at this picture of her as a child martyred by sickroom duties. She realised she was being given an inappropriate label ("Yeah, but I'm not really your carer, am I?") and didn't show any interest in seeing Joan again.

I'm not sure that every child would have reacted in that way. Kate was vulnerable and unhappy, and some children might have taken the chance to dump their difficulties onto this label, and gone around saying that their life was hard because they were a 'carer'. Luckily for me, Kate has always seen disability as a part of life, affecting many of the people closest to her. Her relationship with our mother was strongest in the time she was bedridden, and they had hours to sit on her bed talking every day. Kate boasts about my boyfriend's place in the England amputee football team as though it's two-legged football, but a bit cooler because of the novelty value.

My mother died unexpectedly in May. For a few months afterwards, it looked like Kate would be living with me permanently. But last month she went back to live with our father. I've conformed to the worst film cliché (Three Men and a Baby inappropriately comes to mind) and gone from not knowing how to cope with looking after Kate, to having no idea how to cope without her. I'm not sure it will be possible to enjoy feeling free and independent, the way I did before. Perhaps now my home without a child in it will always feel a bit empty.

So far I've resisted the primitive urge to 'forget' to take my pill in the hope of filling the gap left by her absence. But I do feel more optimistic now about having my own children. When I told Kate about this article, she pointed out that if she's always accepted disability and seen it as normal, then so would my children. Out of the mouths of babes ...
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