I did something amazing today. I showered by myself. I walked into town for 20 minutes. I got into my car by myself and I drove. A typical day for Diane, who suffers from back problems, arthritis and chronic hypermobility, couldn’t be more different. Her carer gets her up in the morning and helps her shower. She gets back into bed and looks at her computer which has to be on a special desk so that the weight isn’t on her lap. She has breakfast and returns to bed. “If there is anything I need to do, I do it in bed,” she tells me. “If I’m well enough I’ll sit up and read or do scrapbooking, but I need to be well enough and if I’m not, I can’t.” Diane tries to visit her daughters regularly, but sitting in a chair for long periods is so painful it takes her days to recover from a single outing.
Life has been like this for Diane since 1984, but she has struggled with her illness since 1976. Initially she was on crutches and managed to cope with bringing up two children. But eventually her condition deteriorated and she needed a wheelchair. She has had multiple surgeries, including a knee replacement, but doctors are unable to do anything else for her besides managing her chronic pain. She is on slow release morphine and visits a pain clinic which monitors her condition and medication. Initially her ex-husband cared for her but now she has a paid 24-hour live-in carer funded by the council. “I’m really lucky to have her,” she admits. “There are lots of disabled people who suffer because they have different carers coming and going throughout the day. Sometimes they don’t turn up on time and you’re waiting for hours for your food.”
Despite the pain she’s in, Diane is staunchly positive. “I have no choice [but to be upbeat].” she says. “I can’t change anything and there are people worse off than me. I’ve got nothing to moan about. I’m just so lucky to have my two lovely daughters and grandchildren. That makes me happy.”
But just how different is daily life as a disabled person? “You lose a bit of choice when you’re disabled,” Diane explains. “Before you do anything, you have to think about it. Will I be able to sit at that table to eat or will my wheelchair be in the way? Will they have steps to the front door? Can I get into that theatre? Can I get into that shop? It’s not like somebody who can go to work and jump on the Tube without thinking. It’s hard sometimes. We went to the seaside recently and every restaurant along the seafront had steps to the entrance. We couldn’t get into any of them with a wheelchair.” She also points out that most council housing isn’t purpose built for the disabled but simply adapted and that many listed buildings can’t be modified to allow wheelchair access.
Besides the practical obstacles, other people can be ignorant. “Often people’s attitudes towards disabled people are wrong,” says Diane. “They’re frightened of what they see or they don’t want to see it. Sometimes people look over me when I’m in the wheelchair and ask my carer, ‘How is Diane?’”
I ask her what she makes of David Cameron and the Conservatives’ plans to cut incapacity benefit and target fraudsters. “He’s right in certain respects,” she admits. “There are certain people [who work the system]. But I’ve been on IB since 1984 and it’s changed a lot since then. They are very strict. There are [fraudsters] but there are a lot of genuine people who need these benefits. It’s not easy at all.”
Diane believes that rather than cutting their benefits the government should be doing more for the disabled. “[They] need a kick up the arse,” she says. “We are so backward in this country for disabled people. Housing is atrocious. They say we get enough money to pay for winter fuel but we don’t (IB claimants don’t qualify for the winter fuel allowance which is only available to pensioners). Many disabled people stay in bed during the winter with a blanket and coat on because they can’t afford to pay their bills. Come on government, get it right for us! [MPs] have all this money and buy this and buy that, yet people are paying their taxes and suffering every day. What I’d say [to David Cameron and the government] is just spend a day doing what I’m doing. It’s not all hunky-dory.”
Should the government be doing more for disabled people? What changes would you make if you were in power? Leave a message and let me know.
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