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Me and my mum

As Mother’s Day approaches, Lisa Egan finds herself reflecting on the benefits and joys of time spent with a mum who shared her impairment

As Mother’s Day approaches, Lisa Egan finds herself reflecting on the benefits and joys of time spent with a mum who shared her impairment

I have a habit of snorting derisively at anything prefixed with the word “special” and I should really know better: Without that old favourite, the “special” holiday, I wouldn’t be here today.

In June 1958, twenty-year-old Val set off on the whirlwind adventure of an Essex Physically Handicapped Association trip to Hampshire. At the pick-up point in Chelmsford she was bundled into the back seat of a Morris Minor along with 23-year-old Terry. At a service area en route he offered to buy her a cup of tea and she told him where to shove it.

By the end of the week they’d become friends and remained so for years. Eventually they became a couple and they married in May 1973. They had me in 1979. As I said: I owe my very existence to the historic social segregation of disabled people. It’s a bizarre thing when you find yourself grateful for oppression.

Disabled children are very often raised by parents who have no idea of what they’re going through; I consider myself lucky to have had a mum who knew what it felt like to be me. She knew exactly how much pain I was in when my bones broke. But she also knew how detrimental it was to a brittle child’s emotional development to be overprotected, so she always maintained that it was better for me to live a full life and break a few bones along the way than to spend my childhood fracture-free but without social and emotional stimulation.

I take after my mum rather than my dad; if I hadn’t inherited his left-handedness you could be forgiven for thinking I was cloned directly from her DNA. Both having osteogenesis my mum and I would look somewhat alike even if we weren’t related thanks to the triangular face, short neck and other OI characteristics. But we also both have the same intelligence, wit, sarcasm and stubbornly independent character. In my case it was her impairment that exaggerated the latter trait in me.

Most children with brittle bones will temporarily get lifted between wheelchair and toilet while they’ve got a limb or two in plaster but, with having two mobility-impaired parents, that was never an option for me. Instead my mum and I would go into the bathroom together and we’d brainstorm techniques for me to transfer myself from my chair and onto the throne. The help she couldn’t provide physically she instead provided intellectually and verbally. Having to always do these things for myself amplified the independent streak I would no doubt have gotten from her anyway.

It also resulted in my developing the most outstanding problem-solving skills. OK, I didn’t inherit my mum’s mathematical abilities so I’m rubbish at abstract problems; but give me something real like “I need to move seven minibuses worth of people though I’ve only got six minibus drivers” and I’m your girl.

Having gone to a segregated boarding school miles from home my mum knew she didn’t want the same for me. The integration of disabled pupils which began in the early ‘80s was still in its toddlerhood when I started school in 1984. There were many battles to fight, like my school making me eat in a room on my own or refusing to take me on school trips, but my mother was adamant. My parents had learned so little during their “special” education and they knew mainstreaming provided me with the best chance of making it to university.

Compared to most disabled people I know I seem to have a much happier and healthier perception of my impairment and my impaired body, and I believe that comes down to having had positive disabled role models. I’m human so of course there are things I hate about my body: I have terrible skin, I have a flabby back and I have a Grotbags-esque mole on the end of my bulbous nose. But I have no problem with showing off my deformed bits; I rarely wear long sleeves and actually think the bend of about 80° in the middle of my forearm is quite adorable.

In December 2008 my mum’s heart decided “right, that’s it. I quit.” Two and a half weeks earlier I’d had surgery and she’d come down to London to be with me. With her mobility being rather more impaired than mine my flat wasn’t accessible enough to meet her needs so we had to book her a hotel. With my parents mostly sharing a PA and the PAs remaining in Clacton with my dad we had to find someone to assist her while she was here. It required the same kind of problem solving we’d done my whole life but she did it because she knew I needed her. The operation wasn’t desperately successful but if I had the time over again I’d still have it done because it meant I spent so much time with this wonderful mum in the last weeks of her life.

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