I got quite upset watching Benefits Britain last night and reading the comments about it on Twitter. So many people on Twitter were calling Karen a lazy scrounger. Nobody could stand her. Nor could I but that doesn’t mean I think she’s faking. There was a lot of sympathy for Melvyn and Craig but I saw none for Karen outside the WOW circle. I have chronic pain and even I had precious little sympathy for her because she was so whiny and I just didn’t like her (I appreciate she has several conditions but I’m going to focus on chronic pain here for obvious reasons). I felt let down by Channel 4’s choice of person to represent invisible disabilities. It seems people saw Karen as ignoble and obnoxious. She wasn’t bearing the conditions she has with “quiet dignity”. There’s no law saying people with disabilities have to be likeable though. It’s not a condition of entitlement to benefits either. It’s like the convention that people diagnosed with cancer suddenly become angels on the day they’re diagnosed. Two words: Lance Armstrong. It often seems like the public wants disabled people it can admire and pity in equal measure. People want heroes overcoming all odds, like Paralympians. They want Tiny Tim. But, when all’s said and done, disabled people are just people: good, bad, indifferent, imperfect people.
Karen was criticised for her answers during the work assessment, particularly for saying it hurt to lift a potato. Only Karen knows the truth of what hurts and how much. Not Twitter, not me. Watching Karen, I understood where her responses could be coming from. It’s hard to answer questions in an assessment when you have chronic pain. Many people with chronic pain can perform a lot of different actions once, on the day, but if they do it without giving feedback that it hurts or that they couldn’t do it repeatedly they run the risk the assessor will note that they’re always capable of doing it when the reality is that they might have a flare up tomorrow from doing it once and might cause a long term deterioration in their condition if they tried to do it regularly.
I believe Karen’s report that the pain increased when she picked up the potato – she pointed to the outside of her arm when she said it and I get increased pain from even lightweight lifting there too, although it’s a small and fleeting increase. If I thought her response was excessive at all, it was because the rules of the game say it’s unwise to remark on an increase in pain for such a minor action, assuming her increase in pain was relatively small. Doing so runs the risk that the assessor (whether a pure medical assessment or DWP one) will say you’re exaggerating and/or affected by psychosocial issues. Exaggeration is what viewers tweeting negatively apparently thought. Karen didn’t say it hurt a lot, just that it hurt, but that was enough to generate a lot of negative tweets.
I don’t know what happened to Karen before she was diagnosed with the conditions she has. Maybe it was a smooth ride from initial appointment to diagnosis. Maybe it was a pitched battle. I suspect that at some point it was a pitched battle because I’ve seen the frustration she exhibited over not being believed before. People suffering from chronic pain have to walk a path through the healthcare system but it sometimes seems like an invisible path. Say too little and you don’t really need help. Say too much and a diagnosis of depression is as likely as tests to find a physical cause for the pain. I’ve never had that happen to me but I spent over three years under one particular GP who seemed to think that I was too fragile a flower for the legal profession, that the pain was all in my head and induced by stress, while throughout that time a disc causing debilitating pain was growing ever more (as the surgeon later put it) rotten and my muscles were being put under strain, forced to compensate, in ways I haven’t recovered from yet and may not ever. I can see judgements being made by doctors on an person who comes off as abrasively as Karen and I can see her becoming more and more abrasive as a result.
If she’s defensive, even allowing for the possibility she might always have been unlikeable, it may be because she’s been made to feel like a liar so many times that she can’t help it. I don’t have to like her to understand it because I’ve been through the “I can’t fucking win” feeling. In one mind boggling case, an insurer’s assessment concluded that the surgeon who diagnosed a degenerative disc was just a trigger happy scalpel jockey who enjoyed cutting people up way too much for his diagnosis to be trusted. I paraphrase, but only barely. The surgeon was absolutely livid.
If Karen has been on benefits for some time, this could also be relevant to how she answers. When I made my first Incapacity Benefit claim I rang for guidance on completing the form because some of my symptoms fluctuate. The questions were similar to what Karen was asked, with multiple choice answers. I was quite clearly told, “tell us how it is on your worst days, not how it is today.” I don’t know what the DWP currently says but that’s the rule a long term recipient of Incapacity Benefit would be used to.
Among the tweets were some saying Karen was physically capable of doing a desk job involving typing if it wasn’t for her fake nails. I’m not going to get into how she spends her money but being in pain all the time can drag you down and it’s not controversial to say, “find pleasure in the small things.” It’s a topic you might find on chronic pain forums and my pain clinic says to find things which make you happy. The small things can take many forms. Mine include star gazing, watching the wildlife and my cats but there’s another one that makes me think maybe this is why Karen has such cheerful nails. I mentioned in my last post I usually pick clothes to wear which reflect or enhance my own happiness. I started doing that after surgery, with a dazzling and mood lightening array of different coloured vests and pj bottoms. Rather than carping at Karen, could we consider the possibility that she deserves one thing in her daily life that takes her mind off the pain in the moment she looks at her brightly painted nails?
One of the factors taken into consideration when determining if a person’s pain is “all in their head” or exacerbated by psychosocial issues is their appearance. Someone who makes no effort could have it held against them by an assessor (even the underwear you wear gets judged. Plain cotton is the best way to go. That’s not just personal opinion: I’ve read academic papers on the subject…on psychosocial issues, not undies generally!). In a medical context, bright multi-coloured fingernails could suggest someone who is not just making an effort but who has a sunnier nature than the stress of a medical appointment might display. When it comes to work assessments, this is another no-win situation though. Make too little effort and the same negative conclusions could be drawn. Make too great an effort and, just like the viewers who tweeted on this, the assessor could take it as a sign you’re less impaired than you’ve said in your forms.
Speaking of appearance, the “potato incident” suggested something about her appearance to me. Styling my hair hurts a lot in that part of the arm and in my shoulder. I used to hate my curls and only learned to love them after I realised by blow drying I was putting myself through unnecessary strain. Now I only blow dry my fringe (which, again, I love now but only had put in last summer after my hair temporarily thinned after a large number of steroid injections were administered in one go). It hurts even to do that. Often even lifting my arms to put my hair in a ponytail hurts. I think about Karen’s cornrows and wonder if she’d always have chosen them, whether she’s happier with them than if she was still able to tame her own (probably much tighter) curls (if she did before), whether she’s come to terms with losing a measure of control over her own appearance.
Back to the question of her ability to do a sedentary typing job. A reminder in case anyone reading this is new. I do work. I work part time. It hurts like hell every single working day. It hurt like hell to write this on my mobile even though I wrote it in chunks. I didn’t catch which part(s) of Karen’s back are affected because I missed the start of the programme, although that one little mention of pain in her arm that provoked so much fury suggests to me that typing could be out of the question. The chronic nature of her pain is also relevant. Doctors now know that, regardless of what the underlying cause of chronic pain is, pain begets pain. I’ve been told several times that by living in a daily “pattern of pain” where I peak and trough throughout each day of my normal working life instead of having the more normal non-pattern of good days and bad days (flare ups), I’m risking making my body’s ability to process pain worse as well as risking joints and muscles. That’s what Twitter (and the Daily Mail, of course) could be demanding Karen should do. But then, I didn’t see Channel 4 explain to viewers what strain different types of work would put on someone like Karen by modern medical standards or how chronic pain itself affects her body. Did I miss it? Channel 4 got the “money shot” of her refusing to do the work experience they were offering. In the context of the show, I thought she made the wrong choice. It’s one day. She’d probably have a flare up afterwards but it’d settle down again. That’s not to say she’s fit to work in the real world, just that I wish she’d stopped to think about the image she was putting out there.
Channel 4, you let us down. You hurt me. It’s your fault if people with invisible disabilities felt like Twitter was rounding on us during and after your programme. It’s your fault for not acknowledging prejudices and ensuring you had three people with similar personalities. It’s your fault for casting a wicked witch for dramatic effect. You know what, Channel 4? I hate you a little for that. I really do. There is one thing Channel 4 could do now to help the people it hurt by broadcasting this. Presumably it verified Karen’s medical conditions before making the show and verified their impact on her. It would be the sensible thing to have done. If it did, it should make a statement to that effect on the news and both before and after next week’s programme.
For more on perceptions of people with invisible disabilities, I’d (not very humbly) recommend Looking Good: Invisible Disabilities where I picked out quotes from a study on the subject.
The programme mentioned rates of employment of disabled people in 1949 and today. The high rate of employment in 1949 wouldn’t have included Karen. For a detailed review of disability discrimination in the jobs market today I would (even less humbly) recommend How many elephants can you get in the DWP where I reported on the avalanche of evidence I found on the scale of disability discrimination and the fact that the Government isn’t doing enough to change things.