In the end I decided those worried for me might underestimate my Machiavellian streak and that as long as I read from a carefully written speech and posted it here afterwards, it would probably do more good than harm.
So for those who are interested, a copy of the speech I gave is below. I think on balance it was valuable. There was a good mix of 3rd sector and corporate representatives though I can't share who as the meeting was held under Chatham House rules. Nonetheless I insisted on sharing my speech with you all and the Unum representatives readily agreed.
I hope you think that what I said was valuable.
"It's was a very, very, difficult decision for me to come here today. Not physically, but ethically. Rightly or wrongly, the sick and disabled people and their organisations I usually speak to, believe that the corporate world is a cruel and callous one. One concerned only with profit and tax receipts. Can we really blame them after the many mistakes of the last decade or so? There are few companies that know this better than Unum.
But we can't stay in that place of mutual mistrust and justifiable fear forever. At some point, both worlds have to be prepared to listen to each other and find a better way forward. People will only suffer until we do.
That’s why, after much deliberation, I decided to accept the invitation to come here and speak today. 2 hours ago I was in a hospital bed, hooked up to an IV feed pumping calories directly to my heart. I didn’t look like this either. I've spent 8 weeks of the previous 12 in hospital, I've had major surgery to remove yet another 50cms of my bowel. I have less bowel than I need to sustain myself with food alone and I've had over 36 blockages causing obstruction and terrible symptoms.
However, in those 3 months, I’ve written 28 articles, given 4 media interviews, taken part in one radio show, advised a TV channel on an inequality programme they are making, spoken at 2 events and attended one gala dinner. I have had 3 meetings with politicians and supported countless disability campaigns through social media. All from a hospital bed.
If anything proves that we can enable people with long term illnesses to achieve fulfilling work lives, it's this. There are ways of enabling those who choose (emphasis) to continue to work to do so, no matter how limiting their conditions. I am entirely my own boss, I can choose when I can manage to work and when I can't. I can pace myself, and set my own deadlines. If I can do it, then so can an employer. I know, because I have enabled hundreds of sick and disabled people to do exactly the same. If I can urge you all to do just one thing after today, please read the comments below an article on my blog, (the Diary of a Benefit Scrounger) entitled “I am Spartacus and I….." I believe it will transform the way you see this issue.
But we are the first generation who must deal with it. Just 50 years ago, people like me would have died. But as the briefing to this event pointed out, we can now ensure that people live with serious illnesses indefinitely and up to 50% of 50 year olds will have at least one serious long term condition. However, we can’t yet always do it comfortably.
Employers must learn to address these problems much more creatively than we do at the moment. Work must be totally flexible - often flexitime, part-time or annualised hours are not enough. We must enable home working much more commonly. Those who need to work in “Slivers of time" must retain the protections and rights of employees on permanent contracts. Finally, employers must learn that retaining expertise and experience can be compatible with large chunks of sickness absence or considerable reasonable adjustments. It just doesn’t make any financial sense to lose the best employees, simply because they can no longer commit to everything they did previously.
For politicians, they must ensure that there are no penalties and only incentives to work. Universal Credit would NOT have done this adequately, despite the rhetoric. They must make schemes such as Access to Work available more freely, though sadly we have seen an erosion of A2W rather than an increase. They must allow quick, easy returns to social security support if work fails and they should consider some kind of portable lifelong fund for permanent or degenerative conditions that could iron out some of the roller coaster of sporadic ability.
(Emphasis, key point) MOST IMPORTANTLY, AND I CAN’T STRESS THIS ENOUGH, THEY MUST TOTALLY CHANGE THEIR OPINIONS AND START TO UNDERSTAND THAT PEOPLE WILL IN FACT GENERALLY STAY IN WORK LONGER THAN THEY SHOULD, RETURN TO WORK SOONER THAN THEY SHOULD AND ARE THE BEST JUDGES OF THEIR OWN IMPAIRMENTS. UNTIL THIS IS THE CASE, UNTIL WE STOP TAKING SNEERINGLY OF “ILLNESS BEHAVIOUR” AND MALINGERING NOTHING ELSE WILL MAKE ANY DIFFERENCE AT ALL.
I've learnt that the gulf between academic or political analysis of the employment market and long term illness, and lived experience are very different worlds. As a campaigner and someone living with a serious long term illness myself, I have a virtually unique perspective, as I’ve also attempted to produce academic analysis. I know myself that good intentions sometimes evaporate when crowbarred into words on a page. Conventions can dilute passion until it’s all but lost. Perhaps most of all, lengthy chapters of heart and soul can be misrepresented in a media world concerned only with soundbites.
How does it REALLY feel to be in constant pain? We might think we know, but we don’t. I have effectively had Salmonella for 31 years. But human nature doesn’t allow us to believe that could be possible. Sometimes I struggle to believe it myself. Yet I’ve lost count of the times close friends or family have told me of a recent food poisoning in sheer horror. They will say “I thought I was going to die, I was clammy and shivering, I passed out on the bathroom floor. I must have been to the toilet 15 times and I was sick until my throat bled.” And they simply can’t bring themselves to believe that I feel like that every single day. Even people who have seen me exactly as they describe countless times can’t believe that it’s really that bad all of the time. We’re programmed to forget severe pain - If we weren’t no-one would ever have a second baby!!
But the fact is that no amount of evidence or statistics or research - or even good intentions - can enable someone who has lived a pain free, healthy life to truly understand those who have not.
The single most important thing we could do is let go of our paternalistic and sometimes judgemental attitudes to ill health and embrace the vast experience and creativity of those trying to be the best they can. If an employee has decades of a previously unblemished sickness absence record, it is extremely unlikely that they became a hypochondriac overnight. If they insist they need an adjustment you believe is unnecessary, it’s vital to stop and ask ourselves if we can really understand the need.
The ONLY (emphasis) way to design and implement schemes or policies that will work for people with long term illnesses is to co-produce them, ensuring that the people who really know what is needed have an influential say in development."
Comments were invited and discussed after the speeches and I pointed out that fatigue is the most cited factor preventing people with long term illnesses from taking or continuing with work. I said that pain can sometimes be treated, symptoms sometimes controlled, but there is just no defence against the often paralysing fatigue that is present in so many long term conditions. Simply having a comfortable space or two that staff can use to rest or even sleep in for a while could help many to increase their capabilities. It would also help with the "brain-fog" that so often accompanies fatigue, allowing someone to return fresher and more productive later in the day.
Well said SueReplyDelete
Wonderful speech! I do wish they would treat us more like humans and less like cattle..... And also - STOP the dreaded fear of a ESA50 (I m in that fear now) and also the unfair WCA that follows you like a shadow through your life, even after you have (luckily) passed it......ReplyDelete
Well done Sue
Great speech Sue, I'm glad you went for it. Your point about work is so important. I'm in the support group of ESA. I have recently had to turn down a piece of project work - not because I couldn't do it (it was almost all from a computer and flexible), but because it didn't fit with the benefit rules. If I took it I would have been earning more than the permitted work allowance of £104 per week (it was well paid, not a lot of hours), but if I took it and came off benefits I would not have earned enough NI contributions to get back on at the end of the 4 month project (you need 6 months earned NI plus fulfill some other conditions). Having to turn down work that I would have loved to do, which might have led to something longer term (within my limits) is so frustrating. But worse is that the system created this problem. The scapping of the linking rules that used to exist is a huge part of this problem.ReplyDelete
For future ref, i think the money can be "evened out" over the year, so if you earn over the £104 but it's only for a while, then you don't earn for a while, I think that's OK, but obviously check with permitted workDelete
Well said Sue. I agree that employers need to completely rethink their attitudes. I was made to feel nothing but a selfish nuisance when I asked for small adaptations to my job. In the end I felt guilty about the trouble and expense I seems to be causing and felt I had to leave . (Oh and this was the NHS.)ReplyDelete
Anna - I had exactly the same thing. I was offered a column by a publication, but the pay was surprisingly little. It just wouldn't have replaced what I lost and the dreadful complexity of ever getting it back would daunt anyone.ReplyDelete
A great piece, and well said and I really identified with it.ReplyDelete
Great job, Sue. Thank you for that and for everything you do for us all.ReplyDelete
Thanks for the comments guys. If you feel it represented you, it's only because anything I ever say re work etc for fluctuating/long term conditions comes from the consultations you all always engaged with. I try to always base anything I say on what you all told me, not my own opinions.ReplyDelete
I think we've got quite enough people who think they matter more than the people they claim to represent. or worse still that they're cleverer.
Brilliant Sue. It was a long time ago, but the biggest design studio in the country couldn't find space for me to lie on the floor at lunchtime, so I stayed where I'd taken the sideways step into self employment, with everything (good and bad) entailed in that. It is in these incremental insults that we find ourselves diminished, and only wake up and take notice when encouraged by solidarity such as you have offered. Thank you.ReplyDelete
I totally agree, if the employers would look at disabiities and illnesses as something that needs to be accepted and not looked at as a barrier to employment for the employee. I forget how many times I was told in the 90's that I was a "Fire Hazard" and would endanger other staff if I had to move slowly out of the building if there was a fire!ReplyDelete
I agree with the "Brain Fog" of constant pain, and as I said on my recent PIP assessment, having a pain twice that of a really bad toothache in my knee 25 hours a day, eight days a week takes it out of you.
All I have done today, apart from helping my wife prepare and serve lunch is a visit to the GP for a flu jab for my father and I am wiped out! I have an hour or so of concentrating tomorrow with an early start and the "siesta" is booked. People who have not experienced this think "Oh, he's putting it on" and there doesn't seem to be a way to break that line of thought!
I am still wondering why the government have had four years to reduce the level of fraud in the DWP system and it is still at 0.7%? Is it that this is the lowest level it will ever reach? Is it overestimated?
most people struggle with just being physically sick once a year but like yourself sue i suffer all the time and also like you with a body to prove itReplyDelete
You made a really important comment - among many of course - about fatigue.ReplyDelete
Over the years I think you can get used to a certain level of pain; I'm in pain constantly. The fatigue however is so extreme it would make it impossible to work normal hours. I just visited my mum for 2 hours on Sunday - a 15 minute taxi drive away - and it has left me in a bad state. I couldn't possibly travel to work then every day let alone work even on a part time basis.
On the other points, particularly Universal Credit, when it was announced with them saying that people like me could work a few hours a week if we were able I though it was a good thing. I paint some pictures every year, it's very painful, but I know that I could sell them for some pocket money, but I have to give them away at present. Like someone said above, who knows what could happen if we were allowed to do such things without any consequences? It may even lead to cease claiming ESA one day, but it was made clear that we would not be allowed to even start on that path.
We need a flexible system to achieve that, not a 1 year try at it and then if we can't earn over 200 quid we have to give it up. I did a painting sculpture in July, and due to the neck, back and tendonitis problems caused by doing such I've not been able to do anything else since! But it would give me great hope to be allowed to earn a little each year, something to really set goals for, and even if I failed, something to give a little extra income.
It currently seems hopeless. When UC comes in, I'll lose the Severe Disability addition amounting to over £200 a month. I doubt even then that the LA will reduce my care contribution to cover that.
Despite that, I'm not allowing myself to feel as if there is no hope. I can only hope Sue that these talks you give somehow hit home and that we can eventually have a platform to discuss our needs and a way forward for all of us.
Thank you for doing what you do!
Wonderful speech, Sue. I particularly liked the paragraph on constant pain. I didn't understand what it was to live with it myself until I experienced it first hand. It's very difficult to explain to someone who has never been in a similar position.ReplyDelete
I'm glad you talked about fatigue too. That's something I have to explain repeatedly to my line manager and colleagues. I'm lucky, in that I've been given the tools that allow me to work from home, but I'm still expected to work 9-5, Monday to Friday. Sometimes I manage it, but very often I don't and I can hear the disappointment in my manager's voice when I have to take yet another sick day. He is supportive, but he doesn't fully comprehend just how my disease - MS - affects me.
I'm glad there are people like you who are continuing the difficult task of explaining the effects of chronic illness to those who are fit and healthy. Thank you Sue x
Well done SueReplyDelete
I confess to having misgivings and a tinge of apprehension about you doing this, Sue but I underestimated you. Your paragraph on fatigue reads like a chapter of my life.ReplyDelete
I've had Crohn's since i was 19 and I had an admin managers job for a national chain. But the fatigue just got worse and worse. I got on really well with my director - we'd socialize outside of work - but trying to make her understand how tired I got was so so difficult and eventually I gave the job up. Having had 4 strokes on top of the Crohn's, I think it's safe to say that my working life is over.
I don't know what the answer is but the question of working with disability needs to be resolved at some point.
And, Sue? I'll never underestimate you again!
Hahaha, I've been in touch with their PR guy for nearly 2 years and this is the first time I've even thought about doing anything that might even be seen as involving myself with them or used any of the things he's said to imply endorsement of him or the company. If that's not hyper-cautious, I don't know what is.Delete
I can only say he's proved his honesty over and over and then over again and jumped through any hoop I felt was necessary to engagement. On balance, he's far from the worst contact I have.
Brilliant. Thanks so much for speaking up for us all.ReplyDelete
When it comes to managing benefits and work, the UK govt could do with having a good look at the Australian Social Security system. Ok, the actual number of hours per week you are allowed to work is only 15, but the withdrawal of the disability pension (same system for the dole, by the way) works much better IMO. There isn't a brick wall.ReplyDelete
A single adult (over 21) gets around $775 per fortnight Disability Pension (there are additional benefits like the mobility allowance and rent assistance). The first $160 earned in a fortnight causes no withdrawal of benefits. Every dollar earned over that deducts 50c from the benefit. There is no 1:1 deduction. Even if you are only receiving $1 of pension, you retain access to all linked benefits (including free prescriptions, discount bus/train travel etc). There's a lot fewer people bouncing on and off benefits and more people doing casual & part-time work wherever they can find it.
I last worked for DSS in Aus in 1997, but I've checked my facts & figures today and it all looks much the same as it was then - though with the Liberal Party (aka Aussie Tories) in power now, they may try to fuck things up.
This was all very well said!ReplyDelete
most people struggle with just being physically sick once a year but like yourself sue i suffer all the time and also like you with a body to prove itReplyDelete
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The article said, "However, in those 3 months, I’ve written 28 articles, given 4 media interviews, taken part in one radio show, advised a TV channel on an inequality programme they are making, spoken at 2 events and attended one gala dinner. I have had 3 meetings with politicians and supported countless disability campaigns through social media. All from a hospital bed.ReplyDelete
If anything proves that we can enable people with long term illnesses to achieve fulfilling work lives, it's this. There are ways of enabling those who choose (emphasis) to continue to work to do so, no matter how limiting their conditions."
You certainly managed to do a lot whilst in hospital ill and having a major operation. But this does not mean everyone could do this, regardless of their condition(s).
I once spent 5 weeks in hospital - but did not feel well enough to glance at newspapers or watch TV, and had only 10 minute visits every 2 or 3 days from my husband and no one else. I certainly couldn't do any of the tasks you managed.
But you say that 'no matter how limiting their conditions' there are 'ways of enabling those who choose to continue to work.' No, there aren't. Some people with some conditions can be enabled to continue to work. That is all. And only some have any choice.
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