What do you do?

“What do you do?”

The question I dread. The question I cannot answer. Not without losing face, anyway.

“What do you do?”

I sit on Twitter.

That’s what I do. All day. Mostly on a tablet. On a laptop or desktop PC when I am well enough. On a phone in bed when I am not. I’m there when I wake up in the morning. I’m there at 2am. I don’t really leave. I watch the stream of tweets flow past. And believe me, when you follow more than 3,000 people they really flow.

It fills the time between hospital appointments. The endless stream brings me news, jokes, struggles, friendship. It fills my browser with tabs to read. So many that I barely have enough time to look away from the stream to read them.

It’s not like I can do much else since I became too sick to work. Mitochondrial myopathy and a whole catalogue of other problems have robbed me of my concentration, my ability to go to my office, to talk, sit, walk or stand when employment demands it. I can’t do the things that employers are willing to pay for anymore, but I can tweet. And I do. A lot.

I still crave usefulness though.

“What do you do?”

I tell people what I think will make them see me as like them. As a productive member of society. I tell them I am an activist. A welfare and disability rights campaigner. I am, too. Twitter has got me involved in campaign groups, put me in touch with people doing anything they can to get the truth in front of media and MPs. Twitter has found me radio and TV interviews and eventually lead to me being part of a Judicial Review over PIP. Through Twitter I have listened to the despair of many sick friends when they try to get the help they are supposed to get. I advise them, tell them where to find the hidden rules, how to get help to get help. Through my own trivial tweets, I am told, I help others to realise they aren’t alone, that their illness isn’t imaginary. They have done the same for me. I have made people aware of injustice, of the fights against that injustice. I have shown them protests and struggles. I have done more than I ever did when I had a nearly functional body and brain.

But all of this takes a toll. I am not well. I am very much not well. Physically and mentally I struggle through every day, and these days, Twitter is an endless bombardment of despair. For me Twitter suffers from having split purpose. It is a space to meet friends, sure, but it is also a public speaking platform. It is a news stream. Since all my friends care about the horror of the world, even when I want to withdraw from that to recover I still see what they are talking about. Twitter is a place for intimate sharing, for larger social circles, for staying aware of what is happening, and for speaking out. The biggest problem comes when a tweet meant only for one of those purposes crosses over to the others. When a minor personal gripe to a close friend becomes an international phenomenon embedded in news stories everywhere.

Over the last few years my tweets have attracted attention. Not huge by media standards but still enough that I will often get 100 retweets on something I said. I am pretty good at accidental anger that people share and amplify. If I am on a roll I can have several tweets like this on the go at once and that makes my notifications… interesting. My tweets about illness attract replies from friends, of course, but also from more distant acquaintances. They often attract unwanted advice that is irrelevant or I have already tried and discarded years before. My political tweets often receive insults or abuse from right-wing people who have come across me being retweeted. The questions, advice, insults and abuse all make me panic and retreat from Twitter. Well, that’s not quite true. I have started retreating to a private locked twitter account which just a few friends are able to see. I don’t think this is uncommon either. Quite a few people have a locked Twitter account alongside their public one, especially people who aren’t straight white cisgender men.

Admitting to having a locked account will make some of my followers sad and for that I am sorry, but this raises another aspect that I am struggling with. I have been very open about physical and mental illness and as a result I have far more people emotionally invested in me than I could ever keep track of. I feel guilty about this every day because I wish I could return the friendship shown to me. Sometimes even the friendly responses are too much for me to deal with and so I have said less about personal things on my public account and only put a few of them on my locked account instead. When I finally managed to admit and talk about my gender dysphoria I did that almost exclusively on my locked account – which is messed up in itself because I have been unashamed of physical and mental illness yet too ashamed of my gender to talk publicly.

I am not sure if there is any solution to the problems I have mentioned. I am bad at segregating my tweets between accounts and in any case I feel useless when something I said could have helped someone else but stayed hidden away. I have thought about deleting my public twitter account but that would be a waste of something that can do a lot of good. I have considered unfollowing everyone and then adding back only a few people so that I see less awfulness but that would upset many people and not address the replies that I cannot deal with.

I am not asking for advice – as should be obvious if you just read this blog post. I guess I will continue with Twitter, continue to raise my voice about the problems that I see, because that is what I do.

“What do you do?”

I shout.

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.

“If you can tweet, you can work”

Blogging Against Disablism Day 2012Picture the scene: I am lying in bed on my front, with my head turned to the side. My right arm is flat on the bed, a phone propped up by my hand. The only part of me moving is my thumb, pressing the on screen keyboard. Pain is tearing through my body, what I feel in my arms, my legs and my hands is agonising. I don’t have the strength to lift any part of my body from the bed. And yet, I have one, tiny connection to the world  – I can send messages out through twitter, and I can receive replies, 140 characters at a time. This is my often my only interaction with anyone else at this point. Through twitter, I can talk to friends, take my mind off my pain and discuss something – anything else. When the pain is too much, I’ve got a support group of fellow sick people and we can commiserate about the pain.

Fortunately, I am not this incapacitated all of the time. No, much of the last few weeks I have been so energetic that I have been able lie back on a pile of pillows and type on a full keyboard for as much as a few minutes before the searing pain in my hands sets in. Sometimes, gasp, I can even make it to a different room in the house for a while.

And yet, according to some, my usage of twitter means that I can work. I can’t get out of bed most of the time, but apparently I am a scrounger who is defrauding the benefit system.

In September 2010 Nadine Dorries MP made a request on her blog for people to look out for people tweeting too much and report them to her. She also asked people to report anyone who tweeted a lot while on benefits to the Department of Work and Pensions. She went on to pick on someone who was waiting for surgery for arthritis on both feet for their prolific use of twitter.

It gets worse. There are now rumours that ATOS (The company paid to assess people, who have been known to declare people fit for work just before they die from their illness) will be checking twitter and other social networks for activity that indicates ability to use a computer for any length of time. Because, you know, that makes you fit for work. Now this may just be rumours, but it shows a huge problem with public and government attitude to the sick and disabled.

I want to work, I really do. I own a business that my father and I have built up over the last 17 months into something that has the potential to go somewhere. I started my business as a last resort, since both of us are disabled, to try and provide part time work for myself that could be done when I have the strength to do it, not strictly between 9am and 5pm. I have been trying to build up more web hosting and design work, and I even tried to carry on working from my bed when this relapse started nearly three months ago. Unfortunately I have reached the point where brain fog has killed my concentration, and pain and fatigue won’t let me keep going to long enough to finish any work related tasks.

I can write, but I couldn’t tell you when or how much I could write. I can tweet, but that’s because tweets are short, and (mostly) fit in between bouts of brain fog which stops me completing my thoughts. I can set up a website without leaving my bed, but who is going to hire me to do that when it might happen now or it might take me weeks because of my health? I could be brought a customers computer to remove viruses from, but then not have the strength or concentration to do it for days.

The fact is, I can’t work. I am not employable. If I had ANY chance at all of working, I would be desperately trying to save my business into which we have sunk time and money and worked so hard for the last year and a half. I have hurt myself trying to run my business and have had to give up and apply for ESA because I have no other choice. And yet, because I have a variable, invisible disease, I am likely to be deemed “Fit for work” by the Work Capability Assessment. I won’t have the strength to appeal against that and I probably won’t have a Citizens Advice Bureau to help me because they are being cut.

So I am going to carry on tweeting and blogging. I have precious little other contact with the world and I will lose my friends and my support group if I don’t. Someone looking at my online activity and judging me on it cannot see how long each blog post took me, or the pain that I have to endure to even communicate with others online. The portrayal by government and by media of all sick and disabled people as scroungers and cheats is disgusting and yet good people that should know better are taken in by it. Those who think I should just lie here and be miserable while I wait to be denied benefits are the problem, not me.

—————————–

I wrote this blog post in February 2011 and I have posted it again today in support of Blogging Against Disablism Day 2012, partly because I’m not up to writing a full blog post right now. I am pleased to say that since then I have started to receive ESA and DLA, although I suspect that is more down to having a very stressful journey to my Work Capability Assessment which ensured that I collapsed in the Atos building than to anything else.

The negative attitudes to disabled people, though, have got worse. While horrific stories about the incredibly sick people who have been declared fit for work have caught some attention, sick and disabled people continue to be called scroungers in the press just for trying to live their lives. A recent report from the University of Glasgow highlights how bad things are getting.

Bad News for Disabled People: How the newspapers are reporting disability [PDF]

I’ll hand over to Emma Round for her commentary on her report:

There has been a significant increase in the reporting of disability with 713 articles in 2004‐5 compared to 1015 in 2010‐11. There is now increased politicisation of media coverage of disability in 2010‐11 compared to 2004‐5.

There has been a reduction in the proportion of articles which describe disabled people in sympathetic and deserving terms. People with mental health conditions and other ‘hidden’ impairments were more likely to be presented as ‘undeserving’.

Articles focusing on disability benefit and fraud increased from 2.8% in 2005/5 to 6.1% in 2010/11.

When the focus groups werea sked to describe a typical story in the papers on disability benefit fraud was the most popular theme mentioned. The groups all claimed that levels of fraud were much higher than they are, some suggesting that up to 70% of claimants were fraudulent. Participants justified these claims by reference to articles they had read in newspapers.

There has been an rise in the number of articles documenting the claimed ‘burden’ that disabled people are alleged to place on the economy with some articles even blaming the recession itself on incapacity benefit claimants.
A particularly awful example of these negative attitudes is seen in professional loudmouth and troll Katie Hopkins. She frequently appears on Radio 5 Live discussions advocating that all sick and disabled people should be denied support and abandoned to fend for themselves. Even worse are some of her tweets:
“If people’s disability benefit was handed out from the top rung of a ladder I reckon most would climb the ladder to get it.”
We can’t let people like this get away with spreading such nonsense and hate. We must talk about disability, about the reality of illness, and educate people on what these things really mean. Sick and disabled people are still people, still part of society, still bring joy to friends and family, and often still work. Indeed, if they are not included, then that is the fault of the people around them.

Broken Tweetdeck

I’m more than a little baffled by the new version of Tweetdeck. It has lost significant functionality compared to the previous versions. The new version:

  • Can’t delete tweets.
  • Can’t see the twitter @ name responsible for retweets because only the real name is shown.
  • Can’t see from a profile whether that person is following me.
  • Can’t reply to or retweet tweets when browsing another person’s timeline.
  • Can’t send a tweet to Facebook as well as twitter when retweeting.
  • Doesn’t show all of my tweets that have been favourited or retweeted, especially after a restart.
  • Insists on quoting tweets instead of the traditional RT @name: tweet.
  • Doesn’t copy hashtags into replies.
It also has changes that I dislike but can live with. It:
  • Requires extra clicks to see conversations attached to a tweet.
  • Won’t let me click in a column to select what scrolls with the mouse wheel as it loads the details for the tweet clicked on.
  • Doesn’t reply to tweets within the columns any more, which means can’t reply to one tweet while composing another.
  • Loses a tweet in progress if it is closed.
  • The colour scheme includes significant white parts. The dark colour scheme of Tweetdeck helped me to communicate when migraines made white web pages hurt.

I’m baffled as to why they would break Tweetdeck like this. The cynical view is that Twitter want to break Tweetdeck so that people return to using the Twitter website directly, but that doesn’t entirely make sense. Tweetdeck provides abilities that Twitter just does not, like the ability to see tweets streamed in real time instead of periodic updates, and can show replies, messages and lists all at the same time alongside the timeline. If I were twitter I would brand Tweetdeck as Twitter Pro and call it a premium service. Instead they seem to be deliberately making it like the Twitter website and breaking it. Unfortunately there is still nothing better to move to.

The fragility of social networks

What would happen if we suddenly lost access to Twitter? This could happen for any number of reasons, either with activists accounts being shut down, or with Twitter itself going offline or being blocked by government.

A friend of mine is worried that if she lost her Twitter account then she would lose contact with the few thousand people that follow her and she has enquired about backing up the names of those followers. There are tools that are able to download and save the names of contacts from Twitter but there is a problem; if the only identifier that you have for someone is their Twitter name, that may not be enough to find them in a post-twitter world. They could easily have used a different name everywhere else even if you knew what service they had moved to.

So how would the anti-cuts movement cope with the loss of Twitter? I suspect that while many people could still stay in touch, whole networks would become fragmented and information would not flow nearly as quickly. Many people that do not use Facebook and perhaps do not use the relevant web pages would be unable to get information from their usual contacts through twitter. They may well eventually find out what they need to know, but it would take much longer.

I do not think that there has been a problem so far with Twitter accounts; I am only aware of spammers being evicted from Twitter, although inevitably there will be some other examples. I think that this will change and it is quite likely to follow the example set by Facebook.

Facebook is not your friend. Facebook is a privately owned business which encourages you to post updates and share information so that it can profit from you. As a private business, Facebook has no obligation to honour the principles of free speech or to provide a service. Facebook can remove pages for any reason it likes. Sometimes it removes pages because they contain discussion of illegal actions or if enough people report the page for containing spam or offensive content. Pages have been removed in the past because of fake copyright claims. The default action in this situation is to remove pages now and ask questions later. Pages could also be removed purely because staff at Facebook don’t like them and being a private company, they don’t have to have a reason. Last week Facebook removed more than fifty anti-cuts and protest related pages without warning. The removal of these pages meant that these groups of people were suddenly fractured and the lists of members and interested people were lost. This is not the first time that protest-related pages have been removed and previous removals have caused massive inconvenience to both organisers and followers. A partial list of affected pages is available here.  http://anticutsspace.wordpress.com/2011/04/29/political-facebook-groups-deleted-on-royal-wedding-day/

Clearly, then, we cannot trust Facebook when organising events, especially if the event might make them nervous or if they fear legal action for facilitating it. I think the same applies or will soon apply to Twitter, and to services such as Livejournal, WordPress, Blogger and others. Even websites are not safe. Websites are hosted by a provider and that provider can be subjected to pressure from lawyers or law enforcement agencies, and when that happens they usually cave in to pressure and pull the website. The safest option is likely to be a privately owned server in a small datacentre but not many can afford that.

Ultimately, my advice is do not trust Facebook, Twitter, or any other social network or service that serves as a point of contact. If there is a person that you wish to stay in touch with even after losing access to these networks, I suggest making sure that you have at least two different methods of contacting them apart from social media. Email and phone number are probably best. Ideally we should organise a phone tree or an email tree as a backup within our protest movements, or perhaps a combination of both.

Further reading

Facebook shoots first, ignores questions later; account lock-out attack works

Stop the facebookpurge!

Political Facebook Groups Deleted On Royal Wedding Day

 

You have zero privacy anyway, get over it

“You have zero privacy anyway, get over it”

Those words were uttered by Scott Mcnealy, CEO of Sun Microsystems, in 1999. It made a big storm at the time in computing circles and left a lot of people outraged. This pre-dated Facebook, Myspace, Twitter, even Friends Reunited and so the age of sharing every intimate detail had not yet arrived but there were signs; in 1997 I and many of my friends at university had personal web sites on which we did share information. In fact, I had my CV available on my web site which I wouldn’t dream of doing now.

In reality, in 1999 privacy was an issue that was both important and not important to me. I was paranoid about my personal email and telephone calls being snooped on and I used PGP to encrypt my email. On the other hand, I happily gave out my name, address, email address, age, girlfriends name, my course at university and more on my university web page and my Tripod web page. Now days I am much more careful with my information and if it is online at all I try to restrict its visibility to just a few people but back then it wasn’t important to me.

I think there are two reasons for that. One reason is simply that web pages were new and exciting technology, and we all got carried away. The other is that individual web pages did not carry the same big-brother overtones that social networks do. When the data is held in one central searchable database it seems very different to many separate web sites. Back in 1999 we barely even had effective search engines, with Google being less than two years old, and so most people looking at a personal web site would be friends, family or colleagues. I first started to lock down my information when I realised that it could have a negative impact in the future. Future employers could easily search the internet for a name and refuse someone a job based on what they see.

With Facebook and other social networks, we are encouraged to share all sorts of personal information. Many people share their complete education history, work history, relationship status, religious beliefs, hobbies, favourite music, film and books, birthday, who they are friends with, status updates and photographs. All this information used to be exposed by default on Facebook, but if you sign up now it will at least mark these things for viewing by friends only. Even so, many teenagers have this information available to everyone and are not even aware that it could be any other way or why they might want that.

Search engines are a huge problem for privacy. Type a persons name into Google, and the chances are that you will find their social networking accounts and their photograph. You will also see personal directories such as 123people.co.uk which gather a worrying amount of information from social networks, the electoral roll, public records and so on. These directories and search engines make it very difficult to hide yourself from searches.

Another aspect of privacy is tracking. People have been worried for years about being tracked by advertising networks such as Doubleclick. (Now owned by Google.) A lot of people delete browser cookies on a regular basis to prevent this tracking. It is also possible to opt out of this tracking. More recently many websites have started to select adverts to show the viewer based not only on the tracking information but also on data from websites viewed. For example, last year I searched the Halfords website for toolboxes of a certain type. For about a week afterwards I saw adverts for toolboxes of the type I had been interested in shown to me on many web sites.  (I normally block adverts, but I couldn’t at that time.) I could see this being very damaging if it showed adverts for something you wished to keep secret while someone else could see the screen.

In 2008 a company called Phorm tried to go even further. Instead of tracking you only through web sites displaying their adverts, they installed equipment at the heart of the BT network which would look at every web site visited and search made. They would then show adverts on selected websites and those adverts would be selected based on all of your web surfing! Needless to say there was an outcry and even questions by MPs.

Unfortunately the most intrusive tracking is now being entered into voluntarily. The Facebook account seems to have become the universal way to identify someone and lots of websites allow you to sign up or log in through Facebook Connect. The “Like” button has become ubiquitous as sites encourage you to share them with your friends. All of this means that Facebook has a vast knowledge of all the websites that you visit that use these things. This has even extended to a tie-up between Facebook and NHS Choices. The only way around that is to log out of Facebook and delete your browser cookies before visiting any other sites.

Facebook Comments, which allow comments to be left on blogs through your facebook account, are particularly intrusive because they link together your web browsing and your social network. If you enter a comment on a website using this system it will be shared back to Facebook and posted on your wall if you are not careful. That can tell everyone on your friends list what web site you were commenting on and what you said. That may be alright on many occasions, but perhaps more than you want to share on others. The rise of Facebook Comments also means that everyone must use their real name on these web sites. That has led many to ask if it is the death of anonymity. I would imagine that websites discussing sensitive issues are unlikely to use Facebook Comments for this reason. Even Disqus comments, a system which I use on this blog, can allow other people to track your comments from one blog to another. It does at least allow anonymous commenting in most cases.

Etsy and Google Buzz show a typical corporate cavalier attitude to private personal data. When Google introduced Buzz they simply added it to every Google Mail account, and made the personal address books of every user available through Buzz as a contact list. This “on by default” attitude caused a lot of bad press for Google and they quickly changed it to require activation by the user.  More recently Etsy has done the same thing. People that signed up to buy and sell “all things handmade, vintage and supplies” suddenly found their accounts visible to all through Etsy’s new People Search. Feedback that they had left on purchases or on buyers suddenly exposed details of items purchased, and these details show up on search engines too. One woman has had some particularly embarrassing information exposed on Google right next to her CV. All this because the owner of Etsy would like it to become a social network.

The trend is towards sharing more and more information on the internet. I think Scot McNealy was right, although a few years ahead of his time. For all our efforts, privacy is dead, and voluntarily at that. I don’t actually see how it can go any other way though – recent events have shown that information cannot be kept secret any more. Fred Goodwin’s super-injunction could not prevent people from announcing that he was a banker. Dictators in the middle east were unable to prevent pictures and news reports from making it to our TV screens.

I believe this marks a cultural shift in attitude to privacy. In the last ten years people have started to live their lives in a much more open way and to share information and events on the internet in a myriad of ways. In a world where it is commonplace to show photographs of a drunken night out to everyone, or to discuss a relationship break up in public, attitudes to past actions must change. Employers searching out potential employees through Google are going to have to realise that everyone is human and no one is perfect. If they don’t see anything about a candidate to put them off, it probably means that the evidence has been hidden well! As a friend said recently, “These are the first generations to publish their entire lives in the public domain. Future leaders will doubtless hold juvenile views that they later discard and regret.” The public will have to realise that things done in the past do not accurately reflect the views of a politician in the present. If a persons entire past can be seen on the internet, people will have to be a lot more accepting.

It’s a brave new world.

Erasing the past

I am currently bedridden, suffering from ME and an as yet unidentified further illness. Twitter is my lifeline and is what has been keeping me sane, and I have managed to produce some ten thousand or more tweets in the last three months. Having finally given up any hope of managing to work, even through my computer from my bed, I have just started the process of applying for ESA and will be judged on whether I am fit to work or not before I can receive it.

I started to worry that my heavy use of twitter could be used against me in this process. I have already explained how and why I can use twitter without that meaning that I am fit to work, but I also worried that my tweets could easily be taken out of context. For example, a tweet about undertaking an activity of some sort could be used as proof that I can do that all the time. What an investigator would not see is how good or bad a day I was having, how much I had to prepare for and work around the activity, or how much pain and exhaustion that activity would cause for days afterwards.

I think the rumours of investigations into ESA claimants usage of social networks are probably not true, but I don’t want to take that chance. I do not have the energy to fight through an appeal should I be declared fit to work.

And so, on Thursday I took the drastic step of deleting all 12,272 of my tweets. I am fully aware that deleted tweets are not really deleted. Although they will no longer appear in my timeline, they are still there to anyone that knows the direct link to the tweet, they will still appear wherever they have been retweeted. (And some have been retweeted more than a hundred times.) They have been indexed by Google and by Topsy, and many others. What I have tweeted can be quite easily found by someone that is really determined, but I simply wanted to put my tweets beyond the reach of fairly incompetent researchers. Someone that I know has done the same thing to prevent trawling by tabloid journalists.

If you are interested in doing the same thing yourself for any reason, I used two tools to do the job. I had to use two because the first one did not work completely. The first was Twitwipe, found at http://twitwipe.com/ and the second was Tweet Eraser, found at http://www.tweeteraser.com/

—Addendum—

This post was intended as a quick explanation for friends that were asking my reasons, but has suddenly become rather popular and has had 500 views in a few minutes. The irony of this has been pointed out to me. If you are here investigating me, please make sure you read all my reasoning, and don’t misquote me.

Relevant earlier posts

If you can tweet you can work, and other such lies

Nothing to hide? I pity you

If you can tweet you can work, and other such lies

Picture the scene: I am lying in bed on my front, with my head turned to the side. My right arm is flat on the bed, a phone propped up by my hand. The only part of me moving is my thumb, pressing the on screen keyboard. Pain is tearing through my body, what I feel in my arms, my legs and my hands is agonising. I don’t have the strength to lift any part of my body from the bed. And yet, I have one, tiny connection to the world  – I can send messages out through twitter, and I can receive replies, 140 characters at a time. This is my often my only interaction with anyone else at this point. Through twitter, I can talk to friends, take my mind off my pain and discuss something – anything else. When the pain is too much, I’ve got a support group of fellow sick people and we can commiserate about the pain.

Fortunately, I am not this incapacitated all of the time. No, much of the last few weeks I have been so energetic that I have been able lie back on a pile of pillows and type on a full keyboard for as much as a few minutes before the searing pain in my hands sets in. Sometimes, gasp, I can even make it to a different room in the house for a while.

And yet, according to Nadine Dorries MP, my usage of twitter means that I can work. I can’t get out of bed most of the time, but apparently I am a scrounger who is defrauding the benefit system.

Last September Dorries made a request on her blog for people to look out for people tweeting too much and report them to her. She also asked people to report anyone who tweeted a lot while on benefits to the Department of Work and Pensions. She went on to pick on someone who was waiting for surgery for arthritis on both feet for their prolific use of twitter.

It gets worse. There are now rumours that ATOS (The company paid to assess people, who have been known to declare people fit for work just before they die from their illness) will be checking twitter and other social networks for activity that indicates ability to use a computer for any length of time. Because, you know, that makes you fit for work. Now this may just be rumours, but it shows a huge problem with public and government attitude to the sick and disabled.

I want to work, I really do. I own a business that my father and I have built up over the last 17 months into something that has the potential to go somewhere. I started my business as a last resort, since both of us are disabled, to try and provide part time work for myself that could be done when I have the strength to do it, not strictly between 9am and 5pm. I have been trying to build up more web hosting and design work, and I even tried to carry on working from my bed when this relapse started nearly three months ago. Unfortunately I have reached the point where brain fog has killed my concentration, and pain and fatigue won’t let me keep going to long enough to finish any work related tasks.

I can write, but I couldn’t tell you when or how much I could write. I can tweet, but that’s because tweets are short, and (mostly) fit in between bouts of brain fog which stops me completing my thoughts. I can set up a website without leaving my bed, but who is going to hire me to do that when it might happen now or it might take me weeks because of my health? I could be brought a customers computer to remove viruses from, but then not have the strength or concentration to do it for days.

The fact is, I can’t work. I am not employable. If I had ANY chance at all of working, I would be desperately trying to save my business into which we have sunk time and money and worked so hard for the last year and a half. I have hurt myself trying to run my business and have had to give up and apply for ESA because I have no other choice. And yet, because I have a variable, invisible disease, I am highly likely to be deemed “Fit for work” by the Work Capability Assessment. I won’t have the strength to appeal against that and I won’t have a Citizens Advice Bureau to help me because they are all being shut down.

So I am going to carry on tweeting and blogging. I have precious little other contact with the world and I will lose my friends and my support group if I don’t. Someone looking at my online activity and judging me on it cannot see how long each blog post took me, or the pain that I have to endure to even communicate with others online. The portrayal by government and by media of all sick and disabled people as scroungers and cheats is disgusting and yet good people that should know better are taken in by it. If you think I should just lie here and be miserable while I wait to be denied my ESA, then screw you. You are the problem.

More on the despicable behaviour of Nadine Dorries

BMJ: Well enough to work? A report on ATOS by a GP.

Guardian: Frequent tweeting doesn’t make one a benefit cheat, Nadine Dorries

Why campaigning online isn’t such a waste of time

This article is partly a rehash of things that I have said before, but I think it bears repeating.

You have probably heard that the student movement against the increase of tuition fees made extensive use of Social Networks. You probably know that UK Uncut and other anti-cuts groups are organised entirely via Twitter, Facebook and their website. But the key thing, we are told, is getting out there in person to protest. Actually protesting on the internet (rather than organising) seems to be frowned upon. I recently read an article titled  Clicktivism is ruining leftist activism. The gist of the argument is that activism on the internet has no effect because it consists of adding names to petitions and sending out form emails to MPs.  I think that article missed the point; and missed the huge opportunities presented by the internet.

In a Guardian article last month Clifford Singer said that Social media has transformed protest. He talked about how social media has been used to unite activist groups and organise real-world actions,  and he was correct to say that protest has been transformed, but there is another important point to make about the power of the internet in its own right.

As a political activist who is chronically sick I have found it extremely frustrating to be undergoing a severe relapse at a time when I want nothing more than to be out protesting. I want to stand up and be counted but at the moment I can barely stand up at all. But have I really been deprived of a voice? Has my chance to change things been lost because of my illness? I’m going to go out on a limb here and say no. In fact, I think I personally have had more influence through the internet than I would have had out on the streets.

Activism on the internet is not just about adding your email address to petitions, or clicking “Like” on Facebook. Petitions have their place, but tend to carry less weight than letters and debate, which is where the real power of the internet lies. I think the key areas where the internet can change things are Awareness, Debate and Influence. With millions of people using social networks raising awareness is much easier than in the physical world. Current issues come up in daily conversation online, and an interesting thing about social networks is that your friends get to see what you are talking about, even if they don’t follow the whole conversation.

The nature of the internet is such that with a bit of luck a good blog article or Youtube video can “go viral” and end up in front of hundreds of thousands of people who would not otherwise be aware of the issues. Although I was taken by surprise when this has happened to me in the past it is good to know that I had some impact even though I could not go out on the streets myself.

Social networks are a great leveller. Journalists, TV presenters, CEOs, celebrities and politicians all use social networks. It is easy, even commonplace, to have a discussion involving someone influential and to either become more informed by them or to inform and influence them yourself. I have witnessed a party affiliation change after a discussion with Ed Milliband via twitter, and I have seen MPs decide to sign Early Day Motions after constituents contacted them through twitter. I have seen journalists write about issues and bring them to a wider audience after they became aware of them through Facebook and twitter.

Websites like They Work For You and What Do They Know make it easy to keep tabs on what your elected representatives are doing at all levels of government. Sites such as Write To Them give an effortless way to send our thoughts to our politicians, sending our missives by email where it is an option, or by fax where it is not. The Tweetminster website can put you in touch with your MP via twitter. Form letters are not so effective, but thoughtful discussion through these methods can make a difference.

I am not arguing that everyone should cease protesting immediately or that they should move back from the streets to the internet. Far from it. I believe that changing opinion requires the use of every available method of protest. But here’s the thing: If you want to change opinions and like me, you can’t go out to protest, the internet isn’t such a bad place to be.

Inconsequential messages?

A post on Facebook from my brother in law alerted me to something that John Humphrys said about twitter.

“Educated men and women are devoting vast amounts of their time and intellectual energy sending entirely inconsequential messages.”

Yes, it’s true. People do tweet about inconsequential things. Just like people say inconsequential things on the telephone, or in the pub, or in a million other ways. Unfortunately, this has entirely missed the point. Twitter is used for a myriad of things, and even the inconsequential messages are not really inconsequential.

What twitter does:

  • Alert the world to important news from disaster zones and oppressive regimes
  • Get information from people in need of help to the emergency services in relation to the above
  • Raise awareness of causes, be they disasters, missing people, or protest movements
  • Inform and co-ordinate protesters in oppressive regimes
  • Allow planning and co-ordination of protest groups in less totalitarian environments too
  • Keep people informed hours, even days ahead of mainstream news

Those are some pretty important things, but that’s not all twitter can do. What about:

  • Learn from people of many different skills, specialisms and roles, from many different walks of life
  • Provide business networking, leading to real opportunities for jobs or new customers
  • Access to experts to help solve problems in business or personal life
  • Allow customers to force business to react by posting negative experiences
  • Allow business to interact directly with customers and potential customers for research, customer service and to provide information
  • Allow governments to release information to the public easily
  • Allow the public to talk directly with politicians and get a response

And finally:

  • Those “inconsequential” messages – social chatter, moaning, commiseration, joy, depression, support, and friendship, forming real relationships between people
  • Allow those that cannot leave the house to talk to other people and engage in all of the above

I have personally either witnessed or been involved in every one of the points raised above. None of the above would happen if people were not using twitter for inconsequential messages as they wouldn’t be on twitter otherwise! Twitter changes lives and saves lives. The last point in the list above  is a lifeline for myself and for many other sick and disabled people. If you still think that inconsequential, we might have to send someone round to sort you out. I can probably find someone through twitter for that.