Sometimes I find it quite difficult to use social media, as a disabled person. Not so much on a technical level, as on a privacy level. How much can I share with which people? How can I try to be sure no one gets the wrong end of the stick?
As a recipient of certain kinds of disability assistance I have to be aware that I may, at some point, be the subject of an investigation without my knowledge. That's not paranoia; the DWP quite openly advises that (over and above investigations of individuals reported as potential fraudsters) it regularly carries out checks on random samples of claimants. I'll be surprised if, in 2011, this doesn't include checking social media use.
I have nothing to hide. However, social media centres around succinct postings. Twitter is the extreme example at 140 characters, but even where there isn't a limit, it's not the done thing to leave a comment on someone else's blog that is 500 words long. How can I possibly fit in all the explanations and circumstances about how I manage to do something despite my limitations? Attitude plays a part as well. If I'm posting about having gone out somewhere with friends, my readers don't want to read, and I don't want to write, a post detailing which joints hurt and what kind of headache I had and how many times I had to stop and rest, that's just depressing!
My posts and tweets aren't earth-shatteringly important, but here's an example of what I mean:
What I want to tweet:
"Steve and I went for a nice walk round the block this evening."
What I feel I should tweet to avoid accusation:
"Steve pushed me in my wheelchair around the block this evening."
What I want to post:
"I had chicken primavera for dinner. Never had it before but it was really nice. It's chicken, pasta, mushrooms and veg in a creamy sauce."
What I feel I should be adding lest the DWP are watching:
"I had chicken primavera for dinner. It was a ready-made microwave meal because of the difficulties I would have with preparing such a meal from scratch. I had to sit down while the meal cooked. I ate the meal sitting at the kitchen counter because I was unable to carry it through to the main room without dropping it. The meal was only in my house in the first place thanks to the wonders of online shopping."
What I want to blog:
I went into town by myself! I bought X, Y and Z! I had cake! I feel very proud of myself!
What I feel I should add for the benefit of anti-fraud units:
It was the first time I left the house in a month without Steve right there next to me. I had difficulty getting a wheelchair-accessible taxi. I bought a coat in the sales but I could not try on any other clothes because I lacked the energy and co-ordination to safely get changed by myself in unfamiliar surroundings. My pain levels were high and the medication I took to relieve the pain had the side effect of making me feel very dizzy and sick. At one point I became lost despite the simple and familiar layout of the town centre. Despite purchasing and consuming a sugary snack in the hope of boosting my flagging energy, I was unable to accomplish all the tasks I had wanted to because I was too exhausted. Staff in the final shop I visited were concerned about how ill I looked. When I got home I had to nap on the sofa.
You see what I mean? The positive stuff is true. The negative stuff is true. They don't contradict each other if you know the full story, if you know me you can see how they mesh together. But if you were only reading one side of it, you'd think I was either fit as a fiddle, or the world's worst whinger.
I'd be interested to know how other disabled people manage to hit the balance between staying positive online, but not jeopardising their DLA.
Tuesday, August 30, 2011
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5 comments:
Stuff like going "for a walk", I wouldn't think twice about - either the wheelchair detail is irrelevant or it is taken as read by people who know my circumstances. Other stuff, I worry a little about - I have to say I have my doubts about the DWP thing (I mean, they're definitely out to get us but I'm not sure in a 2011 kind of way), but I am concerned that I don't appear inconsistent if I had to turn someone down or ask someone to wait for me because of bad health.
However, I generally work on the basis that my friends and contacts have enough respect for and trust in me that they'll work it out for themselves. And if anyone did ever question things - including the DWP, I could explain. I guess perhaps the key is the overall picture. If you were blogging three times a day about going out and about, meeting friends and having skydiving lessons (pref with video to accompany the eventual news story), then that would look suspect... But you write about your ill health and you write about your life and there's nothing inconsistent there at all.
Funky new coat, by the way. Love the purple. :-)
I do find myself adding explanations to justify myself, and wondering whether to discuss doing something apparently energetic when the cost afterwards won't necessarily be apparent. It's evidence of a climate of fear and lack of understanding around the lives of disabled people that simply isn't healthy for our society.
As a mental health benefit claimant I share your concern. A few weeks ago I tweeted that I'd had a good day - trip to garden centre, cake, bought plants etc. I then felt compelled to tweet that it would take me a few days to recover and I would be living on bread and jam for a while. Isn't it shameful that we are made to feel this way?
Thanks, all. Nessthehat (welcome!) has made a really important point there, similar to one that I think Lisybabe made a few days ago about physical impairment and swimming. We're being made to feel fearful and guilty about doing fun activities that may help our specific conditions (and general overall health) to stabilise or even improve, because we see the propaganda where a person doing this or that fun activity is held up as proof of disability benefit fraud.
It's doubly distressing from the mental health perspective because so much of what can be done to improve mental health involves trying to create and sustain positive, healthy thought processes and avoid negative, irrational ones. Fears of being watched, of being tried as a fraudster, of losing one's income, are not positive or healthy at all - I'd call them outright damaging. But not entirely irrational in the current climate.
I don't think you're being the least bit paranoid unfortunately. I found your 'translated' tweets funny - in a gallows humour kind of way - but that's exactly the sort most M.E sufferers need to get through the day.
Good luck with it all.
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