Recently a group of people with various disabilities and chronic illnesses (some of them in very precarious health, two of them having been admitted to hospital in the last few days and two others narrowly avoiding it) compiled a report, Responsible Reform (or the “Spartacus Report”) which presented the real views of disabled people and the organisations which represent them on the proposed changes to Disability Living Allowance, which compensates people for the additional costs of being disabled and, unlike most other British state benefits, does not depend on whether the recipient is in work or not (in fact, it often helps people stay in work by paying for wheelchairs, adapted vehicles, computers and software and so on). This is to be replaced with a so-called Personal Independence Payment, the criteria for which are likely to be much stricter and will exclude a lot of people who presently receive DLA. The government’s excuse is that the current situation results in overpayments, to supposedly enormous cost to the taxpayer; the disability community contends that (according to the Department of Work and Pensions’ own statistics) the fraud rate is tiny and that much of the benefit goes unclaimed.
I saw two developments which sadly got more significance attached to them than they deserved, in my opinion. One was that the Daily Mail published an article on their RightMinds blog by Sonia Poulton, which was wholly supportive of the report. Many of those on Twitter thought this was a leader column by the Mail itself, or an article which had been published or was going to be; in fact, RightMinds is their version of the Guardian’s Comment is Free site and very little of what appears there also appears in the paper. I looked through the paper today and did not find that article. The same was true of the Mail’s coverage of Boris Johnson’s declaration against the DLA reforms: it wasn’t news enough for the Mail to put it in the paper.
The second was the statement by Dr Clare Gerada, the chair of the Royal College of GPs, on Twitter which was reproduced on Sue Marsh’s blog here. Gerada is married to Prof Simon Wessely, and some have pointed out he has links to various insurance companies and to the DWP itself and may have been involved in drawing up these reforms in the first place. Another concern is that Wessely’s theories are instrumental in fostering disbelief among doctors in certain chronic illnesses, notably ME (myalgic encephalomyelitis), and if it is impossible to get a diagnosis of anything other than a minor psychological problem or “Joe/Josie Bloggs syndrome”, getting DLA will be extremely difficult even if these reforms do not pass. For that matter, other conditions have led to presumptions that the patient is mentally ill despite pathology that can be identified by someone who knows what they are doing (this happened to Kaliya Franklin, one of the major authors of this report). It is not sufficient to support people’s theoretical rights to benefits; doctors themselves need to stop disbelieving clearly ill patients and fobbing them off with psychobabble and referring them for treatments that are proven to be ineffective or harmful.
My main reason for writing this, though, is to explain why disability benefits are not something we can just do away with by saying “the cupboard is bare” or “we can’t afford it”. While Disability Living Allowance was brought in in the early 1990s (the government are saying it is based on an “outdated” understanding of disability, being as it is 15 years old!), the need for such benefits arose as more people with disabilities physical and intellectual and those with mental illnesses were released from long-stay institutions into the community in the 1980s. DLA helps keep people independent, allowing them to live a dignified life in their homes, or with their families, allowing to earn a living (and pay taxes), and to contribute to society in one way or another. It means we do not have to maintain institutions for most of them, which means we save on catering and cleaning, and heating vast buildings, and hiring large numbers of orderlies and nurses. People (or close family members or friends) will clean their own homes, and cook their own food, at their own expense, probably better than a contractor will as they are not trying to drive down costs. Not being in a medical environment (with others who are prone to infections) means less risk of infection, which saves the NHS money. And so on.
Perhaps many people are not aware of the old institutions, maybe because they were often out in the country in secluded grounds, so the only people who really knew about them were those who worked there, or who visited relatives there. Many of the present government are of a younger generation and even they entered politics when the institutions were mostly closed or closing. Many people remember the shenanigans of “care in the community” in the 1990s, which became a euphemism for “not all there” (it’s something we used to say to each other when working at Woolworth’s in the mid-1990s, whenever we had just served a weird customer), but they forget why the places they had come from were shut down (because they kept people out of society for too long, for no good reason). If you have ever been to a poorer country than the UK, you may well have seen a lot of people begging, many of them with limbs missing or deformed. That doesn’t happen in the UK, because people with disabilities get the benefits they need to work, or at least survive without begging.
So, next time you hear a Tory (or Lib Dem) politician tell you “there is no alternative”, remember that there in fact is — wholesale re-institutionalisation. Only, the buildings have been either demolished or sold off, and building new ones will cost an awful lot of money. Caring for people with disabilities or the chronically ill in nursing homes or long-stay hospitals costs more than supporting them to live at home, and is less satisfactory for them as it imposes an institutional lifestyle, even if it does not lead to outright abuse (which it sometimes does). There is, in fact, no way to reduce the disability budget without imposing a lot of extra bureaucracy, a huge institutional care burden, or a lot of suffering (and manifestations such as public beggary) which would prove politically intolerable.
Possibly Related Posts:
- Jail for poor taste, and May and ‘autism’
- Protect your rights — vote the Tories out
- Before you trust the Tories on mental health …
- BADD 2017: On dignity
- On the problem of proving hate