My friend James (who like myself is a mentally ill person) here imagines what might have happened at The Samaritans when they came up with the idea for “Samaritans Radar” – an app that alerts the user if the people they follow on twitter appear to be having a hard time with their mental health: without the knowledge or consent of those users.
I’d like to have been in that meeting: SamaritansRadar edition.
– “So we’ve got this idea where an algorithm sends alerts to followers based on the content of their targets Tweets. It essentially looks for any people who might be struggling to cope and sends notifications to their followers letting them know that.”
– “Right, so it searches for arbitrary phrases, removes them from any sort of context and then immediately alerts a load of people that the person is dangerously unhinged? OK. I like it. How do people sign up?”
– “That’s the easy bit! You just install the app and it will immediately and anonymously start tracking your targets’ Tweets.”
– “No, how do you sign up to be followed? You know, to give consent to have people following you like this.”
– “Oh, you don’t. But I can’t imagine any situation where someone in a really bad place wouldn’t love to have everything they say broadcast to an unknown and unknowable audience of literally anyone who wanted to follow them.”
– “You can’t? Because I’m also thinking that this app would be great for stalkers to know when their victims are at their most vulnerable. And even if it weren’t, it’s still meaning that people with mental health issues can’t Tweet anything without having to constantly worry about being inundated by well-meaning but condescending helpers who can’t distinguish sarcasm from a legitimate cry for help. In fact I would go so far as to say there is very little actually going for this app.”
– “When you sign up there’s an option to post an annoying little Tweet about how noble and amazing you are for spying on your friends?”
– “I want a working copy of it by Friday.” ”
There’s much more to say,of course, and I’d advice people to also read this from QueerBlueWater and this from LatentExistence and I may yet write something myself. Why? Because every mentally ill twitter-user I know is absolutely TERRIFIED of the possible consequences of this reckless and ill-thought-out app from The Samaritans. Remember guys, you’re supposed to be one our side offering nonjudgemental help *as and when we ask for it*, not harming us so that our followers can feel good about invading our privacy.
TW: this post discusses social care, “reablement” services, mental illness including self-harm and suicidal ideation and institutional neglect and abuse of disabled people, particularly of me. Stay safe and don’t force yourself to read it if it could harm you.
I sometimes feel I write best when I’m writing about what hurts me. This blog is full of post about my experiences of living with chronic disabling illness and of living in a world that reminds me over and over again that people like me – whether that’s disabled people, trans people, Jews, LGB people or unemployed people – are not wanted or welcome. I write about what hurts me.
I’m hurting right now and haven’t posted in almost a month. What’s happened?
I am being harmed. I am being abused. I am being… “re-abled” by social services. And they’ve decided i don’t qualify for on-going care. That means my care hours, as of tonight, will be cut to ZERO and any care I need I will have to organize and pay for myself – if I survive long enough to sort something out. (My friends and partners are not going to let me die so don’t worry too hard but I basically cannot be safely left alone for more than three DAYS without completely giving up on caring for and feeding myself. An otherwise identical person with no local friends would be dead or hospitalised within a month with malnutrition. I really wish I were exaggerating here).
For the majority of people who’ve never heard of it or had to go through it, “reablement” is an up-to-six-week long assessment period in which care is provided to a person and (in theory) they are given the equipment and support they need to look after themself. On paper, it looks like sort-of a good idea BUT in reality, huge funding cuts mean people aren’t being given as much equipment as they need, are fighting hard and waiting weeks to see that equipment and are being assessed as needing (as I do) about 5 to 6 hours of care a week THAT THE COUNCIL THEN REFUSES TO PROVIDE OR PAY FOR. And even if all the equipment I could benefit from were provided to me, even if I were given my five hours a week ongoing care to keep me alive… the process of reablement is still neglectful and abusive BY DESIGN.
The people sent to support me were deliberately and secretly instructed NOT to help me and to push me to do things by myself. My every morning wash and evening meal was secretly turned into a battle of wills between me, an exhausted mentally ill person in a lot of pain and a carer / support worker who was often meeting me for the first or second time. They pushed me further than I should safely be pushed and they pushed me every day. And I capitulated and forced my pain-filled exhausted limbs past my limits daily *because when I am scared or upset, my PTSD makes me extremely compliant*. I repeatedly tried to explain to both carers and my assessor that I am exhausted and in pain and vulnerable and that whilst I often physically *can* make myself a meal, I usually really, really *ought not to do*. I tried. My concerns were frequently ignored and now I have no care, not all of the equipment I was promised and a fight on my hands to stay in an abusive system in the hopes of getting less than a MP’s meal allowance a day spent on keeping me alive and healthy enough to do anything at all beyond surviving.
My depression and PTSD have been getting very bad lately and is it any wonder? I’ve been seen by carers and by my assessor in tears and self-harming. I’ve had to get friends to help me in the last few weeks because several times a day I think in all seriousness “I want to die just so all this stress and abuse will end”. Things are literally that bad but for the sake of a few quid the council would apparently prefer to let me try to look after myself alone.
And it all links back to the questions on the PIP and ESA forms that apeear in my letter box at irregular intervals and the number of different GPs who’ve happily signed my sick notes yet the DWP still want to get Atos or Capita to assess me in case all 6 GPs were wrong and the comments of the likes of Lord Freud who thinks people like me shouldn’t be paid minimum wage but also shouldn’t be able to live off benefits… it all comes down to having to fight and plead and abase myself daily to show that I deserve to live. It all comes down to narrating over and over and over again how my illnesses and disabilities affect me and how many doctors I’ve seen and getting professionals to write down exactly what I just said on pieces of paper that other professionals may or may not take into account… Will I be deemed worthy, fit for life, this time? And if so, for how long?