Samaritans Radar and Twitter’s Public Problem

Let me preface this by saying that contact from friends through Twitter when I have been at low points has absolutely saved my life. I would be dead if it were not for my friends on Twitter. Now, with that out of the way, read on.

The Samaritans have proudly launched a new app that when activated will alert the user to tweets from people they follow that might betray suicidal thoughts. When you sign up to Samaritans Radar it will watch the tweets of everyone that you follow and will email you as soon as it notices any tweets with key words and phrases related to depression. It is described as working through “a specially designed algorithm that looks for specific keywords and phrases within a Tweet.”

Spotting when a friend is low or suicidal is a laudable aim but this app immediately rings huge alarm bells for me. There are huge implications for privacy and consent. It seems that the Samaritans have considered only the privacy of the person that signs up to use the app, but says nothing about the privacy or consent of the people that the app monitors. In fact the website assures us that “The people you follow won’t know you’ve signed up to it and all alerts will be sent directly to your email address.”

The reaction to this app has been divided. On the one hand there are scores of people who seem very pleased with this and think it is a useful tool and a great idea. On the other hand, nearly everyone who I know who has or has had mental health problems has been immediately shocked, outraged and scared by it. The objections are many, including that people may self-censor if they think that they will trigger this app, that they may trigger it too often, that the app may be used by stalkers to pinpoint when a person is most vulnerable. Or spammers. Or evangelists. It is natural, then, to ask whether someone can reject Radar. Alas, it seems not. The Samaritans director of policy was asked the question and his response was troublesome to say the least: lock your Twitter account.

https://twitter.com/Ferns_Joe/status/527450160214056960

The idea that people should lock their account to avoid something is one that is also frequently used to defend harassment and to defend doing nothing about harassment. It always comes from people who have not experienced the issues that might drive a person to hide in that way and who thinks it acceptable to tell marginalised people to hide themselves if they don’t like society. It is unacceptable to drive people to hide rather than address a problem within society. The same viewpoint says that tweets are public and searchable therefore anything that people chose to do with them is OK. That is also unacceptable.

https://twitter.com/Ferns_Joe/status/527452663185948674

Radar may be limited only to those who follow me but I have over 6,000 followers. I follow only half that number, and I actually, really know only a few hundred at most. Among my followers are people who hate me and people who are my political enemies who are keeping tabs on my activities so limiting something to my followers is not good enough.

https://twitter.com/PaulAshYoung/status/527461305104744448

https://twitter.com/Ferns_Joe/status/527454616024539137

The suggestion that we don’t know how Twitter works is really insulting. People use Twitter in many different ways. For some Twitter is a news stream, for others it is a marketing channel. It is a place to chat with friends, a place to campaign politically, a place to turn for help, a place to commiserate. Twitter is just a place that humans inhabit and do human things in. The trouble is, Twitter doesn’t know this. The terms and conditions allow the whole stream of tweets to be sold to organisations for various purposes with or without consent.

Here’s the thing. We do know that tweeting is broadcasting. But tweeting is also a conversation among friends in a pub that can sometimes be overheard by others. Some of those others may be casual acquaintances, complete strangers, investigators from the DWP, or journalists. We may or may not care if they overhear. Sometimes something said to friends in a public place can be reported in the news worldwide. That doesn’t mean it’s what you expect to happen. Neither do we expect a mental health charity to create a tool that makes it easier to violate people’s boundaries.

Are you the kind of person that sneaks up to people’s private conversations to monitor them just because they’re in a public place? Because that doesn’t tell me I don’t know how things work, that tells me that you don’t know how society works. There’s an awful lot of people who have no idea of boundaries and think lack of technical block is society’s blessing to do something.

https://twitter.com/geeoharee/status/527461872589484033

https://twitter.com/IamMrJ/status/527459149068902401

The thing is, Samaritans almost get how Twitter can be used. On the Radar web page they say:

“Samaritans recognises that social media is increasingly being used as an outlet for people to share their feelings. In addition, there are some who may go online in the hope that someone will reach out and offer support.”

They must realise that the way a person sharing their feelings uses Twitter is different to the way that marketers or organisations use Twitter.

I think that the concept of an app that can alert a trusted friend about bad mental health episodes could have some merit however any such app must obtain full consent from the person being monitored and it must allow the individual to choose who they trust enough to receive the alerts. I might even use such an app in those circumstances.

Try again, Samaritans.

Please sign the petition to get Samaritans Radar shut down

Related Reading 

Former Samaritans volunteer @elphiemcdork: The Samaritans Radar app – the problem is right there in the name.

@YetAnotherLefty: On “Samaritans Radar”

@adrianshort: Samaritans Radar: paved with good intentions

Serious questions raised over whether Radar is compliant with the Data Protection Act:

@bainesy1969: Samaritans Radar – serious privacy concerns raised

@aimscetera: Email to Samaritans about Radar

@susanhalluk: Weary, Stale, Flat, Unprofitable – and in breach of the Data Protection Act

You can reach The Samaritans on 08457 90 90 90.

PIP judicial review: Court rules against us but vindicates our case

We lost. The judge ruled that in the end the consultation process for PIP was not unfair.

However that is not the whole story. You see, the judge found that it was the second consultation that made things right. The first consultation, he had some harsher words for. Words such as:

“Unfortunately mind-bogglingly opaque.” (Paragraph 105 part ii)
“At best ambivalent” (Paragraph 105 part vii)
“Convoluted, inherently unclear, ambiguous and confusing.  No construction allows for full coherence.” (Paragraph 106)

Not exactly a ringing endorsement of the way the government chose to do things, I think you’ll agree.  The government’s legal team also agreed, and in fact they have accepted that they must share a portion of the costs of this judicial review in the face of evidence that it was indeed justified.

Not only that, but the government made it perfectly clear that they know exactly how much their policies will hurt people but want to do it anyway.

“… [T]his was recognised from the outset.  In developing the PIP assessment we were aware that the vast majority of recipients of DLA were individuals with genuine health conditions and disabilities and genuine need, and that removing or reducing that benefit may affect their daily lives.  However, we believe that these impacts can be justified as being a logical result of distributing limited resources in a different and more sustainable way…”.
(Paragraph 80)

Let’s see that again:

we were aware that the vast majority of recipients of DLA were individuals with genuine health conditions and disabilities and genuine need, and that removing or reducing that benefit may affect their daily lives.”

And again:

“genuine need”

So we have the government’s lawyers arguing that the DWP and the government ministers know full well that they are removing vital support from hundreds of thousands of people who have few other options and who will suffer as a result. And they are doing it to save money.

The judge agreed with the DWP that taking money from physically disabled people to allocate to other PIP claimants achieves “substantive equality between physically and non-physically disabled.” I argue that this has reduced the equality of physically disabled people compared to not-yet-disabled people, purely because of budget.

This is Lowest common denominator equality.

This is your government. This is what the society that we live in is prepared to accept.

The court’s findings and what’s next

The judge was persuaded by Dr Bolton’s evidence that the government could have changed their decision had they decided to listen to the overwhelming opposition to the 20m rule in the second consultation, and so it was not unfair. My legal team and I disagree. We still argue that the decision had long since been made and that the secretary of state had a closed mind by this point, and so the second consultation was not at a formative stage.

Although the judgment went against us I feel that the judge’s analysis of the first consultation is vindication for our bringing this case to court. Don’t forget that the second consultation only came about after this case was given permission to proceed and the DWP realised that they could not get away with such a shambles.

I hope that the admission by the government that they know exactly what they are doing will make people wake up to what is happening. Meanwhile, this is not the end. The legal team and I are considering our options to appeal this result.

Press Release from Public Law Solicitors

PIP Consultation Judicial Review Press Release

Read the full judgment

PIP consultation judicial review starts today

Two weeks until PIP Judicial Review – 20 metre limit in the dock

Replacement of disability living allowance headline news for hours

Why I am suing the government

PIP consultation judicial review starts today

Today a judge will consider whether the Department of Work and Pensions carried out a fair consultation when it decided that only people who could walk less than 20 metres would get the full amount of help for mobility.

Where with Disability Living Allowance (DLA) claimants had to be able to walk less than 50 metres to qualify for the higher rate, under Personal Independence Payments (PIP) the cut-off will be just 20 metres. People who fall between those two distances will receive the lower rate of £21.55 a week instead of the higher rate of £56.75. As a result they will no longer qualify to lease a car from the Motability scheme and if they currently have one it will be taken away. Other things that may be affected can include automatic entitlement to bus passes and local taxi or dial-a-ride schemes. The lower rate of £21.55 won’t stretch much beyond one taxi trip to see a doctor or hospital in many areas.

Although three people initially pursued a judicial review, two cases were put on hold and my case was continued as representative of the others. The judicial review will examine the consultation about PIP that took place in early 2012 and the second consultation that focused on just the mobility component which took place in late 2013.

The main case is that the first consultation did not address the change to 20 metres while, by the time it got to the second consultation it was too late because there was no realistic possibility of change. The rest of the scheme had already been put in place and so money had already been allocated elsewhere.

In response to the second consultation the DWP unexpectedly claimed that the budget that in the past helped people with physical disabilities to get out and mobile had been reallocated to help people with learning disabilities and mental health problems. This pitting of one impairment against another is fundamentally unfair.. Rather than address inequality by bringing everyone up to the same mobility level, they have chosen to help one group by seriously disadvantaging another. It would seem that the government has seen the word equality but has not understood what it really means. If they had told us what was in their minds when they were consulting we might have had a chance to put them right.

Equality vs Justice
Equality vs Justice

The judicial review will be heard at the Adminstrative Court in Bull Street, Birmingham starting at 13:00 today and all day tomorrow. We don’t yet know when we will hear the results. There will be a vigil outside the courts in Bull Street, Birmingham today at 13:00 which supporters may wish to attend. Please spread the word and tell your friends to look out for this story in the news.

This news report from Sky News last year includes an interview with me about the impact of the changes.

Related blog posts

PIP 20 metre rule consultation response: “We’re not listening.”

Victory! DWP to launch PIP mobility consultation

PIP Judicial Review given the go ahead

Announcement: legal action against the DWP over the #PIP consultation

Why I am suing the government

If you can only walk twenty metres you’ll get no help

Replacement of disability living allowance headline news for hours

Two weeks until PIP Judicial Review – 20 metre limit in the dock

This blog post was a little less dry but then I ran it past my lawyer.  (Don’t tell her I said that.)

Two weeks until PIP Judicial Review – 20 metre limit in the dock

It seems like forever since our attempt to get a judicial review over PIP and the fraudulent consultation. Well, that attempt has come to fruition at last. The case against the DWP will be heard in Birmingham on the 9th and 10th of July.

20m in the house of commons

This specific case is about the decision to slash support from those who can walk less than fifty metres, to only those who can walk less than twenty. The drastic reduction in the eligible distance means that some 500,000 people will be left without support even though they can walk less than 50m without some kind of assistance. This change has been made purely to cut costs, as was admitted by the DWP in their response when we forced them to re-open their consultation.

It has actually been quite difficult to bring a case against an opponent that can change the rules to suit its own agenda however the court has agreed to hear arguments surrounding the consultation and the fact that the DWP did not mention the slashing of support until after the consultation was complete.

I will provide more details here on the specific arguments we will make as soon as I can clear them with my solicitor.

Related blog posts

PIP 20 metre rule consultation response: “We’re not listening.”

Victory! DWP to launch PIP mobility consultation

PIP Judicial Review given the go ahead

Announcement: legal action against the DWP over the #PIP consultation

Why I am suing the government

If you can only walk twenty metres you’ll get no help

Replacement of disability living allowance headline news for hours

 

DWP demand access at random to your home and documents

In today’s scary news, it has emerged that the DWP are claiming the right to enter the home of people in receipt of a variety of benefits, demand to see their ID and financial documents, and interrogate them for an hour or more. All without prior warning.

While the DWP have always had teams that investigate fraud – including spying on people through their windows from parked cars – the idea that they can select you at random and turn up unannounced appears to be new. What happens if you turn the DWP officer away is not stated.  While the website says “You can reschedule your appointment if you need to” it also says  “You won’t always get a letter in advance telling you about the visit.” Of course this is very likely to be backed up with the usual “you do not have to comply but if you do not then your benefits may be affected.” When confronted with the idea of losing all their income most people will obey against their will.

As many people have pointed out to me, plenty of sick people cannot cope with this intrusion or unpredictability. (Including myself.) Others may not have the ability to find the documents or to think well enough to provide the answers demanded. Carers who know all the details may not be present.

I suspect that the random selection and the entry into the home without warning  may breach the human rights act. I’d appreciate if someone knowledgeable could check this for me.

It is notable that the text claims that the DWP will check you if you are on Housing Benefit. That benefit is implemented by the local authority and not the DWP. This leads me to believe that this update is mostly posturing for the tabloids on the part of the SPADs that churn out propaganda for the DWP Press Office.

A page on the gov.uk website carrying a date of 2 June 2014 sets out what the DWP are threatening. The current contents of that page in full:


Home visit to check your benefits payments

You may get a visit from a Department for Work and Pensions (DWP) officer to check that your benefits payments are correct. A Performance Measurement review officer may visit you if you’re claiming:

  • Employment and Support Allowance
  • Housing Benefit
  • Income Support
  • Jobseeker’s Allowance
  • Pension Credit
Your name is selected at random to be checked. You won’t always get a letter in advance telling you about the visit.

What to expect

The officer will interview you in your home and will want to see 2 forms of identification. They’ll also ask to see documents about money, savings and rent, eg:

  • payslips
  • bank, building society or Post Office accounts
  • rent book or tenancy agreement
  • benefits and tax credit awards

Visits usually last up to an hour but may be longer. You can reschedule your appointment if you need to.

Check their identity

You can check the identity of the Performance Measurement review officer by:

  • asking to see their photo identity card
  • calling the Business Support Team and giving the review officer’s name
Business Support Team Telephone: 0191 216 8050 Monday to Friday, 9am to 5pm

Please vote, even if you only spoil your ballot

I understand completely why lots of people refuse to vote – that has often been how I have thought too over the last few years. There is a catalogue of reasons: the main parties are all the same, they are all in the pay of big business, the smaller parties and independents don’t stand a chance, the party system is broken, no one represents your views, there’s no option for none of the above, voting doesn’t change anything… and the list goes on.

https://twitter.com/auntysarah/status/329737539881664513

If you just can’t bring yourself to vote for any of the candidates, I urge you to spoil your ballot instead. You can even have fun with it, draw a picture or write something witty. Just don’t take a photo while you’re in the voting booth because that is illegal. (So as to protect against any compulsion about who you vote for.) It is true that spoiling your ballot won’t directly lead to change but I believe it would at least counter the idea that people don’t vote out of apathy and they just don’t care about politics. I think it’s worth spoiling your ballot paper just so that the politicians and journalists can’t keep saying that no one cares what happens.

That said, I will be voting this time. Part of the reason for this is that elections for the European Parliament use proportional representation and so the less popular parties can still get an MEP. This does of course mean that far-right parties may also get an MEP.

Obviously the far-right BNP, UKIP and nationalists are not even in the running as far as I’m concerned, nor the right-wing or  neoliberal parties like Conservatives, Labour or LibDems. There are parties that I could vote for though, and maybe you can too. You could consider the Green Party, the Pirate Party (who are in some ways similar to the Greens) and the National Health Action Party who are standing up for the NHS. Of those I only have the Green Party as a choice so they’ll get my vote this time. There are smaller more local parties in some areas too so check who they are and what they promise before you go to vote.

If you don’t want to go and vote on Thursday I’ll understand why. I don’t think voting should be compulsory and I don’t think refusing to vote is an insult to anyone’s ancestors. But if you don’t want to vote for any of the options available I’d be very pleased if you would spoil your ballot instead.

Online Friendships: The Problem of Feedback

Social media is a great enabler of friendships, particularly for people who for whatever reason cannot interact with other people in person. Where social media falls down is that it can lack feedback. When talking in the physical world humans acknowledge each other in various subtle ways. Sometimes it may not be a complex reply but may just be a look or a nod, a facial expression, or perhaps an audible acknowledgement like “mmmm”, “uh huh” or “oh” or some other noise.

The trouble is we mostly don’t do that when it comes to tweets and comments.

Social media can be used in lots of different ways but what many people post is a mix of news and links alongside personal updates of situations and feelings. People who are reading will see both and will often share what interests them or comment on it. When it comes to more personal updates though, they won’t necessarily reply but they would miss those things if they were not there. The personal updates shape our perception of a person and can increase feelings of connection to that person. Very often though, there is no suitable way to reply. There’s nothing that can easily be said, or we don’t feel the need for a full sentence in reply but have no way to nod our acknowledgement. We read and absorb but say nothing in return.

This leads to a big problem: we can feel ignored because people only interact when we post something funny / awful / outrageous and they seem to skip over the personal stuff. Friendships through social media are real and meaningful, frequently more so than acquaintances in the physical world, and yet they lack a huge chunk of feedback that makes us feel validated as a person.

The “Like” or “Favourite” button has become a proxy for acknowledgement in some cases but that doesn’t work when the situation is negative. A button for “I’ve seen this” or “Dislike” might help but even that wouldn’t solve the problem because social media is more broadcast than one-to-one conversation. It’s like saying something aloud to no-one in particular in a room with hundreds of people in. There’s no telling how many people would see an update and how many of those can stop to acknowledge each one. It would be impossible for someone following more than a few hundred people on Twitter, for example.

There doesn’t seem to be an easy solution to this problem but it is something that we need to work out as more and more of our lives take place through the abstraction of screen and keyboard.

The complex issue of looking like a fake when I get up and walk

“Perhaps. Not yet but in the future. When I’m ready to face the complex issue of looking like a fake when I get up and walk.”

This was an answer given when I suggested to someone with chronic illness that a mobility scooter would help overcome some of the problems with walking. It’s a sad indication of the judgement by society that affects so many people who could benefit from mobility aids.

Unfortunately what other people think of us is something that keeps many people from accepting that they need help. I myself delayed using a wheelchair for a year or more after I really needed one because I was scared of looking different, scared of being accused of using it only to get sympathy or benefits. In delaying my use of it I no doubt subjected myself more pain and more time stuck in bed recovering than I would otherwise have endured, and prevented myself from doing as much as I might have done.

The problem of being thought of as a fake when standing up from a scooter or wheelchair is a particularly pervasive one. The common assumption amongst the general public is that people are “wheelchair bound” or “confined” to a wheelchair because they cannot walk. Full stop. Of course there are people who cannot walk at all but it is usually not the case. Much of the fuss around the introduction of PIP to replace DLA is that the maximum distance you can walk before help is withdrawn has been reduced from 50 metres to just 20. For those that haven’t thought that through, it should be obvious that you could therefore see someone walk 20 metres or even 50 metres who still gets help to move around. If that seems unfair, think about how you would get through your day if you could only walk 50 metres in one go. For those who are chronically sick they often could walk if they had to but are rewarded with pain, exhaustion and eventual collapse. Because of the stigma around mobility aids they often put up with this until such a time as trying to keep walking ends up confining them to bed in perpetual recovery. In fact, when they finally give in and accept their need for help, far from being “confined” to a wheelchair they are actually freed up by it to go further and to do more. As a result of not wasting energy on trying to walk most of the time they have more energy to stay out and interact with people.

My use of a wheelchair actually means that when I do need to walk I can do so relatively easily as long as I don’t overdo it. The problem is that to an ignorant observer it looks like I was faking my need for help in the first place when instead I can only get up at all because I was using the wheelchair. (Although one of my symptoms is that after prolonged sitting my muscles feel like they seize up and I end up quite wobbly when I try to stand, at least for a few minutes.)

The same judgement affects people who have a Blue Badge entitling them to use a disabled parking space. (I hate that name. Mobility parking space maybe?) The use of a car and a parking space near to their destination may well mean that they can walk the short distance from car to destination without apparent signs of struggling and so passers-by jump on them and accuse them of faking it. If they did not have the car and the parking space they would probably have visibly struggled to walk the greater distances between public transport options and their destination.

If you have read this far then you are probably already convinced but the message I would like people to take away is that you don’t see everything about a sick or disabled person. You don’t see the pain and the recovery time after they have done something without apparent struggle and you don’t see what they would be like if they did not have the use of mobility aids or help from others. Don’t judge, not least because one day it may well happen to you, and if you see someone else judging, set them straight.

Related blog posts:

Embarrassed to be me

Fear and mobility

Blue Badge Blues

Why I am suing the government

Atos to be replaced for WCA but nothing will change

The Department for Work and Pensions has announced that they are looking for a new contractor to replace Atos to carry out Work Capability Assessments.

https://twitter.com/dwppressoffice/status/449121245163180032

This isn’t unexpected given the recent announcement from Atos. However it is clear that the DWP have no interest in making the process any less traumatic. In fact the DWP press office has said that they intend there to be even more assessments but will not stop inflicting punishment by regularly reassessing people who are unlikely to recover.

https://twitter.com/dwppressoffice/status/449122486521970688

The government is of course taking the opportunity to blame the previous government for the whole debacle while glossing over the fact that the coalition took a trial of Employment Support Allowance that was going badly, rolled it out across the country and ramped up assessments against the advice of their own experts. Labour may have hired Atos but the Conservatives and LibDems inflicted this travesty on far more people. In a written ministerial statement Mike Penning talked about “the process we inherited from the previous Government” and claimed that they had listened to experts when in fact they had repeatedly ignored experts.

The fact is that while Atos are complicit in inflicting suffering on sick and disabled people, they were following orders from the DWP. When Atos are replaced by another company the contract will still hold the replacement to “statistical norms” that allow only a tiny number of people to actually receive the help that we expect the government should provide. In reality the replacement of Atos by another brand name is unlikely to change even the staff carrying out the assessments or the buildings in which they take place. (Most of which are rented from the DWP anyway.) In his written statement Mike Penning said

“It is expected that the Transfer of Undertakings Protection of Employment regulations will apply and most of the Atos employees will transfer to the new provider.”

The replacement for Atos will include the same staff, the same buildings, the same descriptors, the same statistical norms. Nothing will change. Same shit different scapegoat.

It is important to note that Atos will carry on under a separate contract in Northern Ireland and that Atos will still carry out WCAs until a replacement is found, though most repeat assessments will not take place. Do not assume that your WCA is cancelled! 

Written Ministerial Statement: Early exit of Atos from WCA contract (PDF)

Doc Hackenbush sums it up well:

How will you differ from Atos? My tie has stripes! Cartoon by @DocHackenbush
How will you differ from Atos? My tie has stripes! Cartoon by @DocHackenbush

The Atos name is toxic – Atos spins off OH Assist

Keen eyes have spotted that Atos Healthcare has re-branded as OH Assist. However this isn’t quite all of the story. Atos Healthcare – a trading name of Atos IT Services UK Limited – had two main areas of business. One is the notorious DWP contract to carry out Work Capability Assessments and more recently assessments for Personal Independence Payments. The other is providing Occupational Health services to large companies. This led to contradictions such as Atos Healthcare telling someone’s employer that they are not fit for work and then Atos Healthcare telling the DWP that they actually are fit for work.

Since they are at the frontline of implementing savage Tory cuts, the name Atos Healthcare has become toxic. Business customers of Atos Healthcare have been pressured by campaigners to take their business elsewhere, and no doubt Atos has struggled to employ staff for that service.

It appears then, that Atos Healthcare has spun off those occupational health services under a new name, OH Assist. OH Assist has a new website and their customers have been informed of the change. (As noted on the Southern Health Website for example.)

Atos Healthcare is still operating and their DWP contracts are still being carried out under that name.

An Atos customer notifies staff of name change to OH Health
An Atos customer notifies staff of name change to OH Health

Atos Healthcare remains only to carry out the contracts for the WCA and for PIP assessments and that is all that is referenced on their website. I am fairly sure that Atos will not be part of any bidding to take on other social security related contracts. I suspect that once Atos can extract themselves from the contract for the WCA (Which seems to be happening fairly quickly) and if they can get out of the PIP contract too (Which they may as they have huge delays and are struggling to employ doctors) then the company will shut down and the Atos Healthcare name will disappear leaving Atos IT Services and OH Assist.

While I celebrate the downfall of Atos Healthcare it is important to remember that the problems they perpetuated are rooted in the Work Capability Assessment and that won’t be fixed just because Atos are no longer involved.