It’s important to be aware of social movements and activism happening around the world. The Disability Visibility Project may comprise primarily of people in the United States, but disability rights is in no way a Western or American invention.
On Twitter I became acquainted with Merry Cross, a disabled activist in the UK. Here is my interview with her on the political situation facing disabled people.
Tell me a little about yourself and your involvement with DPAC (Disabled People Against Cuts)
My name is Merry Cross and I have been a disability activist since the late ‘70s, having been subject to disability discrimination from an early age, as I was born with a significant mobility impairment. I founded one of the first activist groups in the UK, with Micheline Mason, called the Liberation Network of People with Disabilities* and then also founded a local group in East London that provided support and eventually, accessible transport, for disabled people. (*At the time we thought it was important to use language that reminded the public that we were first and foremost human beings – hence ‘people with disabilities’ but later agreed with the social model reasoning and used ‘disabled people’).
We produced the first magazine entirely written and edited by disabled people, which was called In From the Cold. I have had many jobs (including teaching, educational psychology, acting with Graeae theatre group and more) but in the ‘90s I worked with others to produce a training manual on prevention of the abuse of disabled children (the ABCD pack) for the Department of Health. I also wrote a book called “Proud Child, Safer Child” for parents and carers, when I realised that everything so far had been aimed at professionals, who only dipped in and out of disabled childrens’ lives. I made my living for 20 years or so as a trainer and consultant on disability issues, with the latter period focused entirely on the prevention of abuse. When I couldn’t manage the travelling any more, I took a job inspecting residential establishments for disabled children.
I have been a member of DPAC almost since its inception. I encountered them at the first major Trades Union demonstration against government cuts in London. I was impressed that they had organised a meeting point and for us to be escorted at the front of the march. After a while I decided to create a local branch where I live and Berkshire DPAC has flourished ever since, with members with a wide variety of impairments:- sensory, physical and mental, and of course combinations of those. We have staged many demos locally against national schemes and also local changes which are particularly damaging to us. This means that the local media do now tend to contact me for comments, rather than me having to contact them.
What’s the latest on United Nations’ investigation over human rights violations with the closure of the Independent Living Fund by the government? Were you involved with getting the complaint with DPAC to the UN?
I was much more involved at the national level until the last 18 months or so, when my back trouble escalated to the point that I can no longer travel to London to take part in either meetings or demos. I did, however, help them compile the evidence to send to the UN to back up our assertion of human rights violations. We each took on certain areas and mine was in relation to housing. Once the bedroom tax came in, people affected by being deemed to have a spare room have either had to pay (if they are not on benefits) or lose money from their benefits, or move to a smaller property. I researched 20 local authorities across the UK as to how many individuals or families were seeking smaller properties, what proportion of those were disabled people and how many smaller properties were available as well as what proportion of those available were adapted for those with mobility impairments. The results were horrendous, with figures (when they kept them) for most authorities in the thousands for those seeking smaller places to live, in the hundreds for disabled people looking and then often 0 or just 1 or 2 wheelchair accessible places available. (Unfortunately I didn’t keep the data once it was sent off, though someone will have, I’m sure). We also learnt that even where people did find smaller properties, their local authorities were very slow in making any necessary adaptations – even refused altogether.
We know that the UN report will (or should) be released this summer, but also that they cannot compel the government to act on it! Our complaint included the ending of the ILF but it was only 1 aspect, and sadly the best we can hope for is that they will be shamed by the report. That, though, relies on the media reporting on it and we only have 2 newspapers which might reliably do that, one being a broadsheet and the other being a tabloid. We now have a BBC which is shamefully cowed by government and broadcasts only what the Tories ‘allow’. Of the other channels, only Channel 4 tends to support us and they have mostly been very slow off the mark and giving very mixed messages when it comes to disability politics.
For disabled people outside of the UK, tell me what’s been happening regarding austerity and cuts in services and benefits and how it’s impacting disabled people in the UK.
It has to be remembered that disabled people have been affected by every benefit cut, not just the specific disability related ones. So there has been the cap on housing benefit as well as cuts to housing benefit for under 25s, the ‘bedroom tax’, and so on. It has been estimated that disabled people are something like 19 times harder hit by the cuts than non-disabled people because of this.
Disability benefits were devised in the 70s to even the playing field for disabled people because our living expenses are inevitably greater. That concept has been eradicated from the system and from the public’s consciousness completely.
Research has shown that the US insurance company (then Unum Provident, now Unum) has been lobbying UK governments since 1982, with a view to getting disabled people out of the welfare system and dependent on private insurance. We know that they have been banned in several states and branded disability deniers in court, yet our governments seem to have welcomed them with open arms! Although the New Labour party introduced the reforms, the Conservatives (Tories) have made them worse and worse, because their real agenda all along has been the total destruction of the Welfare State. (The gradual destruction of our benefits has been the tip of the iceberg and has been followed by destroying the NHS, local authorities and all public services, like libraries.) It is clear that they seized on the banking crisis of 2008 as the perfect cover for using austerity to do this – as in their repeated chorus “In these times of austerity, we must make difficult choices…”
They prepared the public for it by increasingly describing disabled people as cheats and scroungers, so that a) most people over-estimate fraudulent claims for benefits amongst us to the tune of about 70% – honestly! – and b) disability hate crime has gone through the roof, with people being physically and verbally attacked and even murdered, in the streets.
There has been a revolving door of men being Chief Medical Officer at the department of Health, taking a senior position within Unum (or heading up the Unum funded Centre for Psychosocial and Disability Research at Cardiff University) and heading up ATOS, the first company paid millions to get as many of us off benefits as possible. Essentially, the assessments developed to be used in this vicious attack on our wellbeing have little validity in the real world and are increasingly devoid of humanity.
There seems to be a lot of problems with disability assessments–can you explain to an outsider what the problems are and how these assessments have changed over time?
For example, one so-called test for fitness to work is whether or not you can pick up an empty cardboard box – once. So the task is not relevant to the real world of work and what is more, many disabled people might be able to do this once, but not repeatedly. In relation to the Personal Independence Payment assessment, the Government suddenly (and without consultation) cut the qualifying distance we can walk down from 50 metres to 20 metres. What bearing does this have on real life? Many of us can walk this short distance – but can we do it, then walk round a shop, then carry our shopping home? – even if we were to live within 20 metres of a shop! And while the guidance for assessors says they must take pain and tiredness into account, they don’t. The guidance even says that people who can manoeuvre their own wheelchairs around their house no longer qualify for the higher rate, which allows you to have a car!
And although the endless blurb you get tells you to send in medical evidence, the assessors normally refuse to read it! It is certainly more often ignored than taken any notice of. (Had to stop to weep…)
The more it has been brought to their attention that the companies delivering the assessments are a) taking a long time to get through applicants b) making a huge number of bad decisions and therefore c) wasting vast sums of public money on appeals, the more they tinker with the assessments to make them more crude, tick-box, humiliating and cruel.
You may be aware that around 80% of appeals were successful when people had someone with experience of the system with them to support them; so the DWP have made it harder to appeal in several ways and have now set aside £22m to pay their own employees to sit in on tribunals to make it less likely that the appeal will be granted!
One of the things that freaks me out (to speak as a victim for a moment) is that they write “inviting” you to apply for Employment Support Allowance or for Personal Independence Payment when they mean ‘You are ordered to apply. Failure to do so will result in the immediate ending of your current benefit, if you are already a claimant’. Perhaps it feels like an invitation to those who are applying for the first time – but not for long!
I could go on all day about the specifics of the cruelty of it all, but the hypocrisy is also abominable. They pretend, for example, that they want you to let them know about changes to your condition in case they may need to help you more. In fact it is to give them an excuse to re-assess you and remove your benefits. They pretend that all they are interested in is helping you into work, but in fact they keep removing people’s cars, which they had as part of the Motability scheme linked to the old Disability Living Allowance, even when the result is those people can no longer go to work!
On top of all this, they introduced increasingly long lasting sanctions (withdrawal of benefits) for supposedly failing to comply with the conditions of receipt of benefits. These sanctions can now be from 1 week up to 3 years!!! These are applied to everyone, not just disabled people, but have affected people with mental health problems disproportionately. People have been sanctioned for spelling mistakes; for attending hospital appointments; for attending the funerals of loved ones; for being 5 minutes late for an appointment – and all of these, often, despite the claimant telling the Job Centre (local DWP office) in advance! Whistle blowers have made it clear that this is all due to the DWP setting targets for numbers of people to be sanctioned, though of course they deny it.
The result of ALL of this, in combination with other austerity measures which affect everyone, like the so-called bedroom tax – apart from us all living in a heightened state of anxiety – is that the numbers of people depending on food banks to eat has multiplied exponentially. Worse, thousands have died – from starvation or lack of money to keep medicines refrigerated, or suicide, or simply because they were already terminally ill and should never have been subjected to assessments in the first place…You may have seen the figure of 10,600 who died in 11 months in 2011 within 6 weeks of what the DWP call their ‘end of claim’. This is such a nebulous idea as to be unhelpful, but the statistic caused such horror that the DWP now refuses to publish the figures for deaths! In the last few days, Disability News Service has won a legal battle to force the DWP to release information not linked to particular names, which is part of the reports from 49 secret reviews of the deaths of people denied disability benefits.
Then the Care Act 2014 has further reduced any humanity in the system. In order that Social Services no longer have to give anyone but the nearly dead any help (!) it has introduced logic that defies belief. For example, I have been told that because I can drive my car, I automatically have a social life. In fact there is little I can do outside my own home, because of increasing difficulty with sitting on anything other than my raised bean bag. Equally, the fact that I can use a computer apparently means that I can do all my shopping online! I am quite sure I don’t need to explain the impracticality of that to you for anything other than food, but also it is so ISOLATING. I don’t enjoy shopping – except in as much as I meet people and chat.
I can’t bear to go on! But this item from a report about Foodbanks (April 16th) shows how hard it is for millions of people now and of course those millions include plenty of disabled people. Bear in mind that the Scottish Government has tried to ameliorate some of the worst policies in England, and yet… In its annual report, The Trussell Trust said welfare payment delays and sanctions are the most common reason given by those turning to emergency food aid, with low income closely behind.
The charity network provided three-day supply packs for almost 133,730 people across Scotland in 2015-16, marking a new record. The total includes more than 43,960 children and comes as overall UK referrals broke the 1.1 million barrier. (www.thenationalscot)
What has it been like getting the attention of Parliament and local leaders how these cuts have been so harmful to disabled people?
Exceptionally difficult because democracy is vanishing into the mists of time! Demonstrations and marches are ignored and the Government have such a hold over the main newspapers and TV channels that little is reported. Even sympathetic MPs find it hard to get straight answers out of Ministers. You will probably be aware that when Iain Duncan Smith was Minister for Work and Pensions he frequently spouted completely false statistics both inside and outside of Parliament.
There is a rule that if over 100,000 people sign a petition to Parliament it must be debated. Our so called ‘Pat’s petition’ asking for a comprehensive assessment of the impact of austerity measures on disabled people, finally managed this and most Tory MPs made sure the debate was hopeless by simply not turning up. I seem to remember only 6 Tory MPs turned up! They recently showed how little they understand or care by voting (with a few Lib Dems) to cut £30 a week from the already pitiful amount received by people expected to be fit for work in about 6 months from the start of the benefit (the so-called Work Related Activity Group). The House of Lords threw out this cut 3 times but the Govt used a rule that they could say it was a fiscal necessity, to push it through. Meanwhile several MPs made statements showing that they thought this group of people had already been found to be fit and ready for work.
Very few Tory MPs have dared to oppose the leaders and nor have Lib Dems been on our side. But John McDonnell (shadow Chancellor) has always been a massive supporter of DPAC and has, as it were, brought Jeremy Corbyn along with him. In fact quite a few Labour MPs are ‘with us’ and so are many in the Green party and SNP (Scotland’s main party).
Do you know what Alice, this is also a terribly painful question because the truth is the general public have shown time and again that they neither understand nor care.
How serious of a problem is disablism in the UK in your opinion?
Increasingly serious. It began to get so much better during the 70s and progressed – until the Coalition and then the Tories, started on us. They have relaxed things like building regulations to ensure access and, of course, are sweeping away more and more employment rights for everyone. (They will be trying to get an abominable bill aimed at destroying Trades Unions through Parliament next week, I think). As a result of this and the shortage of jobs for anyone, it is much, much harder for even the most talented disabled people to get jobs. Attitudes, as exemplified by the rise in disability hate crime, have also hardened.
Then there is the massive reduction in a fund (and staff) called Access to Work. It used to support employers to make ‘reasonable adjustments’ to enable disabled people to take up jobs. It was never great (I made use of it) but now it is dire. For example, deaf people can now not have paid BSL interpreters for nearly as many hours as they used to and even back then it wasn’t enough to work full time! So once again, they are actually preventing us from working, not helping at all! This just encourages employers not to take us on.
Iain Duncan Smith has stepped down as work and pensions secretary in protest at the government’s planned cuts to disability benefits. What was your reaction when that happened? Do you feel optimistic or hopeful?
The idea that he resigned for the reasons he stated is pure fantasy. He hasn’t got a shred of compassion nor of honesty. He did it to align himself with Boris Johnson (the Donald Trump of the UK!) because they agree that we should leave the EU and because he hopes that Boris will be the next Prime Minister! So I was delighted to see the creep go, just because he is vile. Did it give me hope that things would improve? Not at all. No-one would have been given the job of replacing him if they weren’t enthusiastic about the ending of the Welfare State.
Is there anything else you’d like to share about being disabled in the UK?
I haven’t yet said anything about the ending of the ILF. This abominable decision has perhaps sent the biggest shockwaves through the disabled people’s community, because it can only end in pushing people back into poorly resourced institutions. The Govt claims local authorities will have the money sent to them, but a) it won’t be as much and b) the overall amount LAs receive has been severely cut already and c) they don’t have to ring-fence this money.
I think that if this is not reversed, there will be more suicides and once in institutions again, more premature deaths. You can’t under-estimate the fear it is causing.
Source: Image at the top of the post is from a Tweet on April 9, 2016 taken by Pete Riches (2012): https://twitter.com/Dis_PPL_Protest/status/718756426286542848
Merry Cross is the mother of twins and a retired professional in the field of protecting disabled children from abuse. (She has also been a teacher, a psychologist, one of the first Disability Equality trainers and has acted with Graeae Theatre Company.) Merry has been a disability activist since the early 1970s, campaigning at a national level for things like accessible transport and at a local level too. She formed a group of disabled people in the London Borough of Tower Hamlets, which supported local people but also attempted to get better treatment from the council and offered Disability Equality Training courses. This group also set up the country’s second Dial-a-Ride, a scheme that rapidly expanded.
Today Merry runs Berkshire Disabled People Against Cuts, having joined DPAC in 2010 when disabled people were the very first to be targeted by government for vicious cuts to our social security. These days, apart from campaigning on the streets, we have to raise money and sometimes donate money and even food, to disable people who are struggling to survive. We also help people fill in the horrendous application form for benefits and support them at the so called assessments.
DPAC is Disabled People Against Cuts, fighting for justice and human rights for all disabled people at a time of austerity and welfare cuts.
Berkshire Disabled People Against Cuts