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Reflections on Cerebral Palsy Awareness Month

28/03/2016 16:34 | Updated 28 March 2016

First, I've a personal interest to declare. My twin sister Jenny, who died nearly 20 years ago when we were 27, had cerebral palsy. It's been part of the fabric of my life as the non-disabled twin. I certainly wouldn't need an awareness month to bring it to my attention. And yet it's preoccupied me. Perhaps it's something to do with re-appraising Jenny and my memories of her, that's set it off - I keep thinking of what she's have made of today's state of play.

This week has seen the resignation of UK Secretary of State for Work and Pensions, Iain Duncan Smith (IDS) over cuts to disability benefits, with a swipe at the government's motto that 'we're all in it together'. Was this genuine, and if so, what's prompted this sudden change of heart? Perhaps - as widely believed - his real motivation had little to do with benefits and much to do with the EU referendum, or some other political agenda. Who knows? I can imagine Jenny and I trying to tease it out, and getting nowhere in particular. What's harder to imagine is Jenny's response to the build-up to IDS's resignation. For several days, tensions had been simmering in the Conservative Party. I can't think of another instance where a disability issue had been so prominent, let alone scuppering the implementation of the Budget.

The cuts, had the government gone ahead, would of course have been the culmination of a sustained programme. A programme of PIPs (Personal Independence Payments) and the spare room subsidy or 'bedroom tax'. A softer version of the PIPs assessments was around in Jenny's day, but we wouldn't have foreseen the bedroom tax, which would have penalised Jenny for the second room in her specially adapted bungalow. The room where she kept her wheelchairs, and where I stayed that last summer I visited, shortly before her death. What a waste it would have been, pressuring her to move out of a building adapted for her needs, possibly undoing all those adjustments, and then having to install them again at a one-bedroom property somewhere else, to the cost of tens of thousands of pounds. Ironically, two MPs with cerebral palsy helped vote through this programme of cuts. Back in the mid-1990s, I don't think either Jenny or me would have envisaged a House of Commons with disabled MPs - particularly Conservative ones. Jenny would have been dismayed that two of them would add their votes to a programme hurting the disabled. At the start of Cerebral Palsy Awareness Month, on 2 March, they both voted to reject a House of Lords plan for an impact assessment of a £30-a-week cut to Employment and Support Allowance for the disabled.

Jenny and I had first-hand experience of the '90s recession: I graduated straight into it, and had a painful struggle to find work. The 2008 recession, coming as it did, after a sustained period of boom, didn't feel all that unexpected. But back in the '90s, I don't think that either of us would've predicted the hardening of the social mood that would come with it - the lack of concern and at times sheer hostility towards the disabled or the vulnerable. We grew up at a time when Scope was called The Spastics Society. Jenny was proud to be involved in consultations leading to its name change. What would she say about the retrograde attitudes of the past few years?

Another news story this week caught my attention. Twenty-one years on from the Disability Discrimination Act (now subsumed in the Equality Act 2010), a House of Lords Committee chaired by Baroness Deech found that we're getting nowhere fast. People simply aren't making the 'reasonable adjustments' that disabled people are entitled to. Taxi drivers can get away with speeding past a person in a wheelchair only to pick up a non-disabled passenger a few yards on. And Crossrail nearly saw seven of its 40 stations without disabled access! Over 20 years ago, Jenny chained herself to a train in West Yorkshire to protest against a lack of disabled access. She'd have been appalled that it might have been so nearly necessary again, and that in such a flagship London infrastructure project which bills itself: 'A world-class new railway for London and the south east'.

And then there's science - never a strong point for either of us. Who would have thought that today, some parents would be seeking medical help to stunt the growth of their severely disabled children? This weekend's New York Times carries a feature on the ethics of this practice, which over the past ten years has been applied to children with severe combined learning and physical disabilities. The NYT feature tells the story of Ricky Preslar, a nine-year old with cerebral palsy and microcephaly. With hormonal intervention, Ricky's stature has stabilised to that of an average four-year old, so as to allow his parents to continue being able to provide the level of physical care he needs - without a bigger, heavier body to lift. It goes without saying how controversial this practice is. It's certainly complex, both ethically and emotionally. Sometimes I think wistfully of what Jenny may have brought to a conversation about this sort of issue.

All these conversations I haven't been able to have with my twin over the last couple of decades - what, if anything, would they prove? That things are getting better, or worse? Perhaps only one thing: that disabled people have specific struggles, a mix of triumphs and setbacks. Not everyone can be a Paralympian. The majority behind the statistics are just a wide range of ordinary people trying to make the best of their lot.

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