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/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, 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