An Open Letter to the LGBT+ Community

I went to see Pride last week. Yeah, I know it was released a month earlier but my dad was in hospital at the time so I was mostly just seeing the A12 as I drove up and down it.

It was a period of British history that I know very little about: I was only 5 in 1984. I heard mumblings about miners; but what 5 year old actually pays attention to the news? And it was certainly a long, long, time before I realised I was gay.

I went to see the film after 3 nights of no sleep because of a shoulder injury. Due to the sleep deprivation I was just a tad over-emotional. I spent the whole film alternating between laughing and crying, and was in floods of happy tears at the end. The second the house lights came up I had to make a dash for the nearest toilet to hide until my red splotchy face looked less red and splotchy.

The miners were probably the hardest hit during that particular 4 year term of office. And it was deeply heartening to hear a story about another oppressed group the government loathed - the LGBT community - coming to the support of others in solidarity just because it was the right thing to do.

But after the film I couldn't shake the thought "where are the LGBT community now while disabled people are being kicked even harder than the miners were then?"

The Centre for Welfare Reform calculated that severely disabled people will be hit 19 times harder by the cuts than other people. So many cuts that even I probably can't remember to list them all. But here are just the ones I can think of off the top of my head:

• The creation of Personal Independence Payment to replace Disability Living Allowance. The intention was to reduce the budget by 20% by making the criteria stricter. DLA is only paid to meet care needs and mobility needs. It's to be spent on things like wheelchairs and having someone help you out of bed in the morning. Not exactly luxuries that a disabled person can cut back on. Did you know that now if you can walk a mere 21 metres you probably won't get that help to put towards buying a wheelchair? With the DWP and the private firms hired to carry out the medical assessments unable to organise a proverbial in a brewery; people are waiting for up to a year for their application to be processed and there are 145,000 people waiting for support they need to function.
• Employment and Support Allowance is the benefit for people too ill or impaired to work. There are 394,000 people waiting to have their application for that processed. 394,000 waiting to put food on the table. Such an appalling system that we regularly read about people who were so ill that they died of their condition while allegedly "fit for work". Larry Newman and Cecilia Burns are just 2 of those people. The company doing the fitness for work assessments got it so wrong so often that 40% of appeals against their decisions were successful.
• Two thirds of households affected by the bedroom tax contain a disabled person.
• In most parts of the country; working age benefit claimants have had their Council Tax Benefit cut by 10%.
• At the moment there's something called the Severe Disability Premium. It's not a benefit in its own right; it's a top-up premium on top of ESA/Income Support. The clue as to who is eligible is in the name: Severely disabled people. The eligibility criteria are so complex that only 230,000 people in the whole country are eligible. Under Universal Credit; the SDP is being abolished completely. Not made a bit stricter: Abolished.
• The Independent Living Fund, which allows 18,000 disabled people with the highest care needs to live in the community, is being closed next year.
• Social care is being cut to the point that continent people are being told to use incontinence pads because they're no longer allowed help to go to the toilet. Once I caught the local news while at my dad's house. A representative of Norfolk Council actually went on TV and said "we're cutting things like adult social care in order to preserve popular services like libraries." Disabled people are so loathed that council officials can go on TV and say that with their head held high.
• We're all aware how this government made it more expensive to get an education. Did you know that Disabled Students' Allowance, which pays for things like Deaf students to have a BSL interpreter, is being cut? They recently announced these cuts are being postponed. Not cancelled, just postponed.
• Access to Work, a scheme which funds support to allow disabled people to function in the workplace, has been utterly screwed up. Jess and Julie have both written recently about how these cuts are jeopardising their jobs. They are far from alone.

And these are only the cuts so far. Recently we've heard how the Tories want to cut housing benefit for 18-21 year olds, freeze working age benefits (which will affect disability benefits, despite Osborne's claim at the Tory conference), and pay benefits by cards instead of cash. Then IDS wants to charge income tax on support to pay for wheelchairs and for someone to wipe your butt, despite the fact that many disabled people don't see penny of it because it's immediately deducted to pay for support services. And, of course, Freud let it slip that he wants to be able to pay disabled people only £2 an hour.

Do you remember last Wednesday? It was a great day. For one day the entire country cared about how this government wanted to undermine disabled people's right to the same minimum wage as everybody else. He was the top story for most news outlets, he trended on Twitter all day: And for just one day it felt like the entire nation cared about our equal rights.

Then everyone went to bed that night and by the following morning most people had forgotten about us again. This week disabled people have been in court again fighting the Independent Living Fund closure. Where was the outrage this week that the government want to withdraw the funding that pays for severely disabled people to have food put in their mouths and their butts lifted onto the toilet?

I kind of get it. I mean, in 1984 LGBT people were really oppressed. Relationships weren't legally recognised, the age of consent for gay men was 5 years older than for heterosexuals. AIDS was misunderstood, treatments hadn't been developed, and it was far more stigmatised than it is today. There were no anti-discrimination laws protecting us from being fired for being LGBT or protecting us from being discriminated against by B&B owners when we just want a break for a couple of days.

Now we can get married, the age of consent is equal, HIV is a controllable chronic condition. We do have the legal right to sue our employer if they fire us for coming out at work and we can sue B&B owners who refuse us a room.

In 1984 LGBTs could look at miners and see people who were equally oppressed. The same can't be said of LGBTs looking at disabled people today. Except for those of us who are both LGBT and disabled; most LGBTs have the freedom to have a proper meal every day. The same can't be said for disabled people who are physically unable to cook, can't get social care for someone to help them with that, and so end up eating mostly just crisps. Most LGBTs can have a shower every day. The same can't be said of disabled people who were forced out of their accessible home by the bedroom tax, no longer have an accessible shower, and can only get clean by wiping themselves down with a flannel.

You have to remember that the LGBT community and the disabled community have so much in common in so many ways. We both still experience discrimination, even though it's illegal and we have the law on our side. It's a fight we both face. Hate crime affects LGBT people just like it affects disabled people. Some people are even attacked for being both disabled and LGBT. Both disabled people and LGBT people are massively unpopular with the senior party in the coalition: Not only are the Tories stripping away all the support systems that allowed for the equality of disabled people, but more Tories voted against equal marriage than for it. The law only went through because of supporters in the other parties.

The main difference between the 2 communities I belong to, of course, is society's response. When lesbians were thrown out of Sainsbury's, protesters quickly responded. A few days later a blind woman was kicked out of Tesco. Protesters were nowhere to be seen. Disabled people are more likely to be mocked for going shopping than supported if we get discriminated against in store.

In Pride we see Lesbians and Gays Support the Miners (LGSM) helping to fund and distribute food parcels to the striking miners. Where were the food parcels for David Clapson or Mark Wood? I don't mean to suggest that the LGBT community is in any way responsible for such tragedies for not being more supportive: But the handing out of the food parcels had such a resonance with the issues of today.

The film depicts LGSM getting to work before consulting miners about what it is they actually need. If LGBTs started supporting disabled people (LGBTSDP?); I'd beg of you to ask us how you can help. Disabled people's lives have historically been dominated by non-disabled people thinking they know what's best for us. There's a common saying in the disabled community "nothing about us without us," and that applies as much now as ever. A couple of years ago UK Uncut organised a protest specifically about disability benefit cuts. But because they didn't consult with disabled people for the meet-up arrangements: They chose to meet at a tube station that has no access for mobility impaired people.

Disabled people have loads of ideas for creative ways of challenging the cuts; but we need help to pull them off. We've written films about the ILF closure that we can't find anyone to produce. We organise protests and sometimes only 10 people turn up. There are far more LGBT people with social influence than disabled people. When there's a story like this week's court case we need the help of people with prominence to amplify our message because our collective voice amounts to a mere whisper; where potential LGBT allies have the power to really shout about it. Bronski Beat supported the miners; who is going to support us?

Another very common saying in the disability community is "rights not charity". In Pride LGSM start out their work with the collecting buckets to raise money. At the moment the disabled community is in a paradoxical position: We need to raise money in order to fight for the rights which are being stripped away. Paypal is the 21st century collecting tin and Disabled People Against Cuts are currently asking people to donate 50p to carry on their excellent campaigning.

Pride was a beautifully told story of the LGBT community rushing to the support of those who really needed it. I can't wait for it to come out on DVD so I can watch it again. But ever since seeing it I haven't been able to shake the slight feeling of sadness. There have been so many wonderful changes in the last 30 years that have benefited both communities I belong to. As a disabled person I first had the Disability Discrimination Act, which then became subsumed by the Equality Act. As a gay person I also have protection under the Equality Act. I can even get married now!

But the passion LGSM had for supporting people whose lives were being utterly destroyed by the government: The film just made me acutely aware that disabled people doesn't have that same support. And as someone with a foot in each community, that awareness is slightly frying my brain.

So, LGBT community. Please help us. Our equality, our independence, our jobs, our education, and even our lives depend on winning this fight.

Not Worth It

You'd have to be away from all means of communication today to have not noticed that Lord Freud thinks that disabled people "aren't worth" the minimum wage. Surprisingly even the mainstream media are outraged; BBC News are leading with it.

I'm not going to go into depth about everything wrong with his initial remarks because it's already been covered extensively. If you're looking for comment pieces on his original remarks, I recommend this from Frances Ryan, or this from Richard Exell.

The only things I have to add on the subject of his initial statement are these:

1. He's not the first Tory to say this during this term of government. Philip Davies said the same thing in 2011. Then there is Cllr David Scott who raised the idea of us being not "worth" it with Freud. It's starting to seem like a common thought in the Conservative party.
2. Disabled people make more reliable employees than non-disabled people. A report by DePaul University in the US found that disabled people stay with an employer for longer, take less time off, and are "loyal, reliable, and hardworking.". That doesn't sound to me like people who are "not worth" even the minimum wage, does it?
3. Disabled people currently in work are having their ability to do their job screwed about with by the hideous mess this coalition have made of Access to Work. Read Julie's and Jess's accounts. These are people worth more than the minimum wage, having their capability undermined by an incompetent government.
4. Over 50,000 disabled people in work may be forced to quit their job by DLA cuts. Again, people who are perfectly good at their jobs being prevented from functioning by a government that aren't good at their jobs.

What interests me more is Freud's piss-take of an apology. He said:

I care passionately about disabled people. I am proud to have played a full part in a government that is fully committed to helping disabled people overcome the many barriers they face in finding employment. That is why through Universal Credit – which I referred to in my response – we have increased overall spending on disabled households by £250m, offered the most generous work allowance ever, and increased the disability addition to £360 per month.

From Spectator Coffeehouse.

We all know that he doesn't give a toss about disabled people. Increased spending on disabled households? Tell that to the 394,000 people waiting for their ESA claim to be processed so they can put food on the table. Or the 145,000 people waiting for their PIP claim to be processed so they can afford to pay for a wheelchair or for someone to get them out of bed in the morning. Or the bedroom tax victims: Three quarters of whom have a disabled person in the family. Or the people who currently get DLA because they're only capable of walking less than 50 metres, but will lose it under PIP because they can walk more than 20 metres. Or all the terminally ill people who've been deemed "fit for work" like Larry Newman or Cecilia Burns.

And as for Universal Credit increasing spending on disabled households: They're abolishing the Severe Disability Premium under UC. Not replacing it with something a bit stricter - like the move from DLA to PIP - they're just abolishing it. The country's 230,000 most severely disabled people will be significantly worse off under Universal Credit.

While it's great that the mainstream media are - for a change - coming to disabled people's defence over Freud's original remarks: Why are they accepting his apology without delving into the outright lies it contains?

Edit 16/10/14: Yet another Tory thinks the minimum wage is "A barrier to work". She too presumably was complicit in the DLA cuts which will force disabled people to quit work (the Tories were whipped to vote for cuts.)

Anyone who denies that the minimum wage is a barrier to employment for the less able is living in cloud cuckoo land.

— Jackie Doyle-Price (@JackieDP) October 16, 2014

Even Mr Money Saving Expert himself thinks disabled people should be exempt from the minimum wage:

Just read what Lord Freud actually said and mostly agree. We need Labour market flexibility to help the v few whose disability means (contd)

— Martin Lewis (@MartinSLewis) October 16, 2014

... they won't get work at minimum wage. Some with severe mental capacity problems will never gain work on level playing field. Helps needed

— Martin Lewis (@MartinSLewis) October 16, 2014

Remember yesterday when people thought disabled people were worth it? What a great day. Shame it's "shit on those disableds" business as usual again today.

Always the Pall-Bearer, never the Corpse - Lord Freud & The Risk-Taking Poor

This week, Lord Freud, parliamentary Undersecretary for the Department of Work and Pensions, has been talking once again about the lifestyle choices of benefit claimants and the fact that poor people simply don't take enough risks.

In an interview for House Magazine, where he speaks sensibly about the need for better guidance and clarity within the system, Freud continues to reveal his profound naivety about the lives of people on low incomes. 

“You know, the incapacity benefits, the lone parents, the people who are self-employed for year after year and only earn hundreds of pounds or a few thousand pounds, the people waiting for their work ability assessment then not going to it – all kinds of areas where people are able to have a lifestyle off benefits [sic.] and actually off conditionality.”

Clearly, none of these situations are ones of choice.  Nobody chooses to be incapacitated for work, the majority of lone parents are not even single, let alone impoverished, out of choice.  The self-employed example is an interesting one, because it puts such a porky pie to this rhetoric of risk.

Being a creative type, I've known many self-employed people on very low incomes. I've come across three categories of circumstances:

• People who are earning a very small amount, but have other support, such as a decent pension, a high-earning spouse or financial support from other family. Sometimes these people are hobbyists who produce more steampunk tea-cosies than they can give away, some are pursuing a lifelong dream and others are just pleased to earn a few quid commission on tupperwear or sex-toys.

The risks these people take are highly variable, but they're not close to needing benefits.

• People on benefits who are earning such a small amount that they are only able to reduce the amount they claim on benefits, but are working hard with a view to becoming completely free of benefits at some time in the future.
• People who are earning just enough to stay off benefits for now.  I know these people include at least one of the Where's the Benefit? gang and what they have achieved is pretty amazing.

These second two categories of people are all major risk-takers.  Having helped close friends with the paperwork in these circumstances and having done small amounts of paid writing work myself, I can tell you that any unconventional work, including self-employment, does not mix with the benefits system; until you have done the work, been paid and filled in multiple forms, it is sometimes impossible to know

• how much form-filling is necessary (after writing one piece, I endured a six month paper trail with the DWP, taking up far more time and energy than the work itself.)
• whether you're going to inadvertently break a rule and get into trouble.
• whether your capacity for a little work is going to bring you under suspicion for fraud. 
• at what point you'll lose your benefits.
• how difficult it could be to get back on benefits, if you lose them and need them again.

Meanwhile, the benefits system is much stricter - and less sensible - than the tax system when it comes to expenses and overheads. Often, money is counted as earnings if it passes through your hands, even if you have to spend it to keep your business going. Some of this stuff actually looks like it might improve with the new systems, but it's still a mess now and it always has been. 

So why would anyone bother?  Well, only because they can't do conventional work, but they have the skills and just enough energy to do something. These are usually disabled people, or those caring for disabled people, who have much less time or energy, or much less reliable time and energy, than they'd need to work even part time, employed by someone else.

Providing that there is work available, it would surely be far easier and far less of a risk to do conventional work, if one has the capacity to do so. The idea even benefits claimants who are actively working, thus reducing the amount of benefits they claim and contributing to the economy, can be described as lazy or cautious, is completely ludicrous.

Freud said,

"...people who are poorer should be prepared to take the biggest risks, they’ve got least to lose."

This is nonsense. This is like saying we should recruit soldiers from people who are sick and have shortened life expectancies, because they have less to lose - what's a limb here or there if you're heart's going to give out any minute?  We need our soldiers to be healthy because, as well as being better equipped for the job, they are unlikely to lose as much - they are much less likely to be killed than someone with pre-existing ill health. Similarly, in terms of major financial risk-taking, that's entirely for the likes of Freud and his peers, who have a soft plump pillow of inherited cash and savings beneath them.

When people on benefits are afraid of taking work, it is because they are afraid of being left with literally no income or savings. Of being left homeless and hungry, with absolutely nothing. Sometimes even nothing minus debt.

And finally, on the subject of terrible analogies, Freud defends his massive personal privilege that some  consider disqualifies a person to pontificate about the behaviour of those so very much less fortunate than themselves.

"I think you don’t have to be the corpse to go to a funeral, which is the implied criticism there."

This is true, but you're more likely to be welcome if your understanding of the world hasn't filled you with complete contempt for the deceased and his loved ones.

It helps if you have some understanding of mortality.

To Their Lordships on #SpartacusReport

Lord Freud has today sent a letter to the Lords claiming that the Spartacus Report is not representative of the views of disabled people and that the DWP do indeed research the attitudes of disabled people. Sue Marsh and Kaliya Franklin have already written a response on behalf of the Spartacus Report team, available here, but I thought that I would tackle Freud's assertion from another angle, and look at the actual quality of that supposed DWP research. This is pulled together from a piece I wrote last year, and structured as a letter to the Lords, if you want to personalize it and send it off to any of the Lords in advance of tomorrow's vote, then please feel free:

Dear Lord/Lady <>,

Lord Freud wrote to you on Monday 16th January in relation to the Welfare Reform Bill, challenging the assertions of the Spartacus Report, which exposed the weaknesses and distortions in the government case to justify terminating Disability Living Allowance and replace it with Personal Independence Payments, slashing the budget by 20 to 25% along the way. As a disabled person I feel compelled to write and register my opposition to the assertions made by Lord Freud.

Lord Freud's assertions can essentially be reduced to three points, an insistence that the consultation over the changes to DLA was adequate, that the Spartacus Report analysis is selective, and a claim that the DWP has indeed researched the opinions of disabled people. Sue Marsh and Kaliya Franklin have already responded to Lord Freud's letter on behalf of the Spartacus Report team, pointing out that while government standards call for a 12 week consultation period, the Welfare Reform Bill consultation lasted 10 weeks, over a Christmas period. Other disabled people have reported that disability accessible material did not become available until nearly a month into the review period and in some cases an utter failure by DWP to provide accessible formats at all. The Spartacus Report is based on all material that was made available to the team via their Freedom Of Information request and is in no way selective. As the information provided was the group responses, including those of large disability charities, it therefore represents the views of far more disabled people than the 10% of responses Lord Freud has alleged to you that it represents. Equally, as has been shown over the past year of campaigning, the views of individual disabled people are overwhelmingly opposed to the changes to DLA, so the claim by Lord Freud that the individual responses not seen by the Spartacus Report team are overwhelmingly in favour of his proposals is received by the disability community with surprise, and a large pinch of salt.

In the end, the conflict of opinions is balanced on who holds the most accurate assessment of the opinion of disabled people: Lord Freud and DWP, or a team of disabled people who have been working on engaging with the disabled community for the past year and are held in high regard by all disabled people who have dealt with them. An examination of the quality of DWP research may throw some light on the matter,

Last August the DWP released a research paper 'Attitudes to health and work amongst the working-age population' on the public's perception of work as 'good for us'. David Gillon, a disabled blogger and campaigner writing for the disability website 'Where's the Benefit', set out to analyse the paper for inherent bias and the following section summarizes his findings looking at just two of the questions within the survey:

"Problems start even before we get to the questions, the executive summary explicitly references boosting support for Dame Carol Black's report that being out of work is bad for you as part of the survey's aims.

Um... Which part of Anthropology 101 and the danger of predetermining your findings did the author miss? Anthropological/Sociological survey design is science in a minefield; just the difference between one word and another of similar meaning can completely change the answers that are given. I therefore want to look at the two most important questions asked by the survey in some depth:

The first asks “Doing paid work can affect physical or mental health both positively and negatively. Taking everything into account, do you think that paid work is generally good or bad for physical or mental health?” This is so wide a question as to be almost meaningless. If it had been asked in conjuction with “do you think that paid work is _always_ good for physical or mental health?” then we might have had a useful comparison for understanding how the public actually view long-term health issues and whether they understand that disability really can interfere with the ability to work. But it doesn't ask that, and we have to ask why that might be. And disturbingly, buried in the data tables, three appendices after the final conclusions, is the innocuous statement “‘Don’t know’ responses to questions were removed for this analysis.”

A large part of probing people's understanding is recognising whether they have a good enough grasp on the subject to validate their opinion. How many people understand what that negatively might represent? My own spinal condition means that working left me feeling like I had a second degree burn over most of my lower body, frequently in so much pain that I could barely string two thoughts together. What proportion of the survey population considered the possibility of negative effects on that level when answering the question? And if they didn't consider it, then doesn't that specifically mean we have to throw out any conclusions based on the question, particularly any attempt to use the results in relation to disability and long-term illness?

With the second question we progress from bad to worse. The author sets out to compare attitudes to short and long term conditions, but her two scenarios are back pain that is particularly sore and depression making you feel particularly down. Back pain and depression, the two disabilities which everyone is convinced they understand, and almost no one does. I have already described what my experience of back pain feels like, is sore really an adequate descriptor for the possible extent of disability we are discussing here? And down? Where understanding is bad for back pain, it is far, far worse for depression. In fact the report itself acknowledges this limitation, but again buries it in the appendices.

There are more questions, but almost all face similar questions of applicability and balance. The conclusions state: “The findings are broadly positive and show that the health benefits of work are widely recognised among the working-age population.” That something is believed is not the same as it being positive. Much of the population once believed that the world was flat, that was a workable approximation if you never got more than five miles from the place you were born, but not exactly one we would now call positive. We now have the subtlety of understanding that tells us that the world can be considered flat over short distances, but over longer ones we must recognise that it is round. Similarly, the population may believe work is good for you, but disability benefit design requires a subtler distinction that work is good for most people, but for a significant number of people with disabilities, is actually bad for them. Only that subtler understanding may genuinely be labelled positive, and that is not what the survey has measured.

There appears to have been no independent review of the questions from outside of government, most particularly from Disabled People's Organistions or disability specialists in academia, and yet, as I have hopefully demonstrated, it is all too easy to raise major questions over the entire structure of the survey. The author may genuinely not have recognised the weakness of her questions, but that excuses her, not the findings of her report and raises the question of whether the DWP has any understanding of the scientific concept of independent peer review and why it is an absolute necessity?”

Lord Freud has told you that the DWP has conducted research into the views of disabled people, disabled people tell you his conclusions do not accurately reflect their beliefs, and an analysis of DWP research reveals troubling questions of balance. The choice of who to believe is yours, all I can do is tell you that I, and every disabled person I know, is genuinely scared of the consequences for us if you allow Lord Freud’s proposals to proceed. 

Yours

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