Where were you?

Today the Guardian published a long article on the late Lucy Glennon, who wrote for the paper, most memorably about her condition (epidermolysis bullosa or EB), but also about food and about the effects of cuts to disability benefits on the people who relied on them. Some friends of mine who knew Lucy have noted that under the online copy of today’s feature there are a number of comments calling her ‘brave’, an ‘inspiration’ and similar things that are often said about disabled people, yet when Lucy was alive and was fighting to stay in London (as she needed to do), the comments were full of complaints that she was demanding special treatment at the taxpayer’s expense, and the people calling her an inspiration today did not stick up for her then.

A section of the front page of the G2 supplement in the Guardian. It has a picture of Lucy Glennon, a young white woman with pale skin and glasses, wearing a pink top. The text reads "Lucy Glennon lived in constant pain. She was a fearless disability campaigner, facing her incurable illness with humour. But life got tougher when her benefits were cut".I looked at the comments under Dave Hill’s article from January 2012, and the first two comments suggested she should just move back to Yorkshire or “she needs to move somewhere cheaper”, and they continue in a similar vein (as well as side-swipes at others on benefits, such as “serial breeders who are given large houses to accommodate their brood when they should have refrained from having more children then they can afford to feed and accommodate”). A few people suggested she should move out to the suburbs or to somewhere south of the river which might be closer to St Thomas’s hospital which is equipped to treat EB. Most of the people defending her were other Guardian writers.

Under today’s article there was a particularly clueless comment suggesting that “you could buy a lovely cottage for that amount” (i.e. the amount that was being spent on the rent for her first flat). Of course, you could buy several houses in some northern towns for the price of a flat anywhere in London, let alone central London, but Lucy did not need several houses, or a cottage in some village out in the sticks. She needed a small flat in London, convenient for the hospital she needed to attend regularly to cope with the complications of her condition, and which had room for her dressings and a place for a carer to sleep. (In the event, she got a one-bedroom flat and the carer had to sleep in the living room, although she liked the area and the development she moved into.)

If Lucy had had a different condition, one that did not regularly require specialist attention, perhaps she would have been content moving back to Rotherham, where her family live. I know of quite a few people with chronic conditions who find they cannot have them, or their complications, treated adequately in their local area (Ehlers-Danlos syndrome being the one I’m most familiar with). The specialists are usually in London, and occasionally in one or two other major cities. There are some operations that simply cannot be performed in every hospital, such as the fitting of gastrojejunostomies which allow food to be pumped into the intestines when the stomach does not work properly. On occasions complications have become life-threatening because they have been treated inappropriately, and on one occasion I am aware of, doctors dug their heels in and refused to refer the patient elsewhere. While it is true that people with EB have lived outside London, it makes no sense to require someone already living close to a hospital that is able to treat them to a place where there is nothing like the same facilities available and where the risk to their health, even their life, is elevated, all just to save “the taxpayer” a few bob.

This attitude that living in London is some sort of luxury and that if you “can’t afford it” you should just move, is common currency in the present political climate. It isn’t only disabled people being forcibly moved out because of housing benefit caps to faraway towns where there are no jobs to speak of, as if you could commute every day from Hull to do a job at minimum wage in London. The rail fare is more than you earn. There is a housing bubble which a major recession has failed to burst, and an artificial scarcity of housing in London. London house owners benefit from high property prices; either the poor people who do low-wage jobs that need doing need to be subsidised to live here, or the flow of money into the London housing market can be stopped by new legislation against foreign buyers, buy-to-let mortgages or something else that inflates prices. And London has leading hospitals that are the only places in the country that can treat certain conditions. If you have one of them, and do not live in or near London, your health is at a major disadvantage. And wealthy consultants want to live in London, or near it, because of the milder climate, easier transport connections (for their international conferences etc) and better pay. If you need their services on a regular basis, you need to live near them. If you’ve got a life-threatening infection, it can do more damage on a journey from Rotherham to St Thomas’s than from Euston.

That the attitude towards Lucy changed as soon as she died shows that disabled people are only acceptable when they are dead, or when they are “making people proud”. When she had needs, people carped about money and special treatment. When she no longer needed anything from anyone, all of a sudden she was an inspiration. People with severe EB don’t live very long, and their whole lives are spent in pain to one extent or another. It shouldn’t be much to ask that someone whose health is that fragile should not be subject to needless stress and worry when they do not have long, to save the cost to the public purse of a flat near to a hospital. If you think Lucy Glennon was an inspiration just for living a difficult life, and you cheered on cuts because you thought they targeted scroungers who spent your money, then know that you helped make her life, and the lives of other disabled and chronically ill people, a lot more difficult. Was the saving worth it?

(Also, while researching this article, I googled “where will lucy live”, the title of Dave Hill’s article. All I got were links to pages about Lucy Beale, the character in the British TV soap EastEnders, whose murderer is set to be revealed tomorrow night in a live episode. None of the articles in question have that title. It’s a shame that when searching for an article about a serious issue that affected a real person, all I get are pages about a trivial TV soap.)

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