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I’m Mum to a Disabled Child – But I’m Still Me

Jane Renton who has three disabled children

“Welcome to Holland”…there is an analogy that inevitably does the rounds when you discover that you are now officially the parent of a child with disabilities. It describes a situation where you have been long anticipating a fantastic trip to Italy, only to discover when you disembark from the plane that you have unaccountably landed in Holland. There is no opportunity to change your flight schedule – you just have to accept this is your lot.  

Written in 1987 by Emily Perl Kingsley, WTH was a well-intentioned attempt to soften the blow for people who struggled to accept that the future they had planned for them and their children was now irrevocably altered.  It encouraged parents not to mourn the loss of what was but embrace the beauty of what is. Who needs the Trevi Fountain when you have quirky windmills? Who needs to wear Missoni when you can wear…clogs?

Well, I don’t wear clogs. Nor do I accept that ‘destination next generation’ means that time spent idling on Duolingo Italiano means the grammar to my family’s life has so fundamentally changed that I have to download Dutch too.  

There’s nothing wrong with Holland – but we’re cool with Italy. To accept a complete change of destination would be to accept the inequality discussed in the Social Model of Disability.  Society needs to shift its parameters to accommodate the difference and continued individuality that our families bring to communal life – not the other way around. A paradigm shift is the only short haul deviation we’re ever gonna do.

The future is as bright as it ever was for us.  When they told me that my daughter had achromatopsia – a condition that means that the cone cells in the retina are not ‘switched on’ – I imagined the cool shades I would buy her to adjust for the glare of the sun.  When they told me she couldn’t see colour, I thought you can never go far wrong with monochrome.

Of course, it gets trickier much than that – and bureaucracy is death to the soul.  There are hospital appointments, sessions with physios, and later endless SEN meetings, but I refuse to become the bleached-out background player in my own life. An infants teacher before I had my family, I did my first stand-up gig while still breastfeeding my daughter – my chest literally swelling with milky pride before I nipped off to feed her in the green room.

Going back into the classroom was always going to be a busman’s holiday, regardless of the visual acuity of my child. I was always going to take time to reflect and refocus – the only difference being, how do I get good childcare when the childcare is scared of disability? The good childminders are gold dust. So…can we create the babysitter’s version of an OBE for those chilled-out heroes who allow a single-parent to stay out dancing just a little too late.  We too like to kiss our babies’ sleeping faces with juniper kisses. Because…when in Rome… 

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