Disabled children and carers need more than pity
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Version 0 of 1. Many will be aware of the harrowing story from New Malden of the death of three young children, all of whom suffered from spinal muscular atrophy. One cannot comment on the specifics of this case for legal reasons. However, it seems as urgent as ever to pay attention to the plight of disabled children and their all-important carers, especially those without money – how are they coping? My partner is a spinal surgeon who often deals with severely disabled children, suffering a wide range of conditions, and he sees first hand how their parents (often lone) cope with unimaginable levels of stress and exhaustion. He sees how what they do is quite literally a full-time job. And that is just in a hospital setting. In everyday life, increasingly, it seems almost to be a given that whatever else is happening in government, whatever services are cut, whatever is fudged, forgotten or lost, the disabled and those who care for them get hit first and hardest. Even with a growing voice, with sprawling petitions such as the recent War on Welfare campaign (established by comedian Francesca Martinez), and visits to Westminster, it seems that the disabled are still considered to be the easiest group to bully in the shadows. This extends to disabled children, and those who care for them, all too frequently around the clock. Only recently, during the Easter holiday, there were reports that many children with disabilities were having difficulty getting away for short breaks, because of cuts to services. These breaks are supposed to provide much-needed respite for the children and those who care for them. However, with only a certain amount of respite hours at their disposal, carers find themselves having to choose what to "spend" them on. Others find that the services offered in their area are too inflexible for their children's extremely specific needs. Or that the money allocated to help people like them is no longer there – it has been reduced or redirected into other areas, by local authorities, leaving families with no break at all. Sickeningly, this kind of thing is happening to people who are not only broke but also exhausted just from dealing with everyday life. When you hear from them, the tone is usually less of anger than it is of terror. Hideous stories about ageing parents who are worried sick about their disabled child's future; parents having repeatedly to prove their worthiness for necessary allowances and help, trying to keep track of their benefits status. There are now routine stories of parents growing extra-sharp elbows to navigate the minefield of social services, trying to establish what their child may or may not be entitled to. Indeed, recent days have brought forth yet more first-hand accounts about people's ongoing struggle to cope with their disabled children, the black hole they felt themselves falling into. The worst thing is that, increasingly, all this seems to have become normalised. Even a few years ago, cutting help for the disabled would have seemed shocking, would have stopped people in their tracks. However, as with anything, the more it happens, the more routine it becomes to see and hear about disabled people, even disabled children, struggling, often with precious few resources. Perhaps what disabled children and their carers need is not the expected reservoir of genuine but toothless public sympathy; rather, it is the return of shock and anger – a shock and anger that they are allowed to be treated this way, and an anger they themselves may often be too exhausted to express. Miriam, word in your ear. Shut up and save yourself Let's hope that Miriam González realises what that "cojones" outburst means for her. No more Miriam González, international lawyer, she will now be Missus Clegg for the foreseeable future. She's been lured into the political wife's cheerleader-in-chief slot and must now accept a period of wailing into microphones about how noble, human, fallible, "snorey" (did she mention noble?) her husband is, disagreeing with him just enough to make it cute. She must become Americanised, Michelle Obama-ed to within an inch of her husband's political life. It happens to the best of them, but did González jump too soon? Perhaps it's unreasonable to expect political wives not to get involved. They could hardly say: "I have no interest in the man or his ridiculous job." However, it speaks volumes that González "spontaneously" appears when her husband has been floundering. The result smacks of Clegg's desperation, as if to say: "I can't be all bad if I have such a clever, opinionated wife." While the consensus seems to be that González has outshone the other party leader wives, I'd say that Justine Thornton and Samantha Cameron have thus far been much stronger by calmly holding back. Kids, we don't want your cast-offs Interesting to hear of hand-me-up electronics. A survey revealed that a third of British mothers are using their kids' old mobiles, while six in 10 parents have hand-me-up tablets. While younger generations felt that mobiles under a year old could already be classed as outdated, mothers in particular would gratefully accept these gadgets and only dispense with them when they broke. This sounds depressingly familiar. I reserve special scorn for people who sleep outside shops when new technology comes out (go home to your warm beds, you spoilt, impatient idiots). I have little interest in updating my phone and only do so when given new ones as presents. Left to my own devices, I'd probably still be prodding laboriously at my old grey Nokia and answering it with my signature "charm" – similar to when people receive ransom calls from kidnappers in films, only more tense, suspicious and accusatory. On the hand-me-up front, it's good that British parents are up for a bit of techno-recycling. However, there is the issue of the relentless patronisation and infantilisation of parents by their grown-up children. What says "This is my world now, you past-it old duffer" more than being tossed your child's defunct smartphone? This is the beginning of the slow, sad march that ends with the cheapest possible care home and being pathetically grateful for a visit twice a year and a plate of garibaldis. Basically, it's demeaning for parents to be bunged their children's mobile cast-offs. If this happens to you, throw said phone back at your offspring, demand to see their new one and valiantly pretend to know how to work it. The hand-me-up fightback starts right here. • Comments are turned off on this article for legal reasons |