Most people will be aware of the game show that started in the 1970’s, called The Krypton Factor, or at least those of a ‘certain age’ will. It was a programme aired on Granada TV which was affectionately named after Krypton the fictional home planet of Superman. As you might imagine, with a name derived from a planet who’s rock was attributed to giving Superman his powers, it was all about the strength of its contestants, concentrating more particularly on both physical and mental agility. Contestants scored points for physical stamina and mental attributes and naturally the person with the greatest number of points became the ‘winner’ and the person with the least points - well in those day’s you were considered to be the ‘loser’ - this despite that word no longer being deemed acceptable when describing someone who scores the least points!
So why am I waxing lyrical about an old game show? The answer is simple, I'm making a comparison so you can relate to a condition which is rarely discussed and quite misunderstood and before you turn the page, I'm also highlighting the issues faced by people trying to get help with their disabilities.
On the ‘misunderstood’ element, RA is short for Rheumatoid Arthritis. I can hear you saying ‘Arthritis, that only affects old people, so I can stop reading now! ‘ Wrong, despite the name, RA is a condition that results from your immune system not functioning correctly, but more precisely it's about your immune system working ‘too’ well.
So, getting back to Superman, imagine your immune system was boosted by the power of ‘Kryptonite’. ‘Wow’ I hear you say, that would be a fabulous idea, I'd never get sick…no more annoying colds, no more tummy bugs, just a fantastic opportunity to be like ‘Superman’, but maybe without the cape and the underpants worn on the outside. What if the battle ground for the conflict between Superman and his nemesis, was taking place in your body? Doesn't look quite so amazing anymore huh! What would happen to your body with that Armageddon going on inside?
So now for the boring bit, Superman’s nemesis, in this instance, is a group of normally wonderful things called antibodies. In a person without RA, your antibodies do a wonderful job of fighting off disease, but like anything in life, sometimes things go a bit ‘pear shaped’ and in the case of RA, this involves your antibodies becoming a bit confused and deciding that YOU are the disease. You'll appreciate that I'm not a scientist, so I’m trying to keep things simple.
Scenario, your antibodies go to war with their perceived enemy - YOU! A battle ensues and that battle ground is any part of your body, but in particular your joints, heart lungs, muscles and tendons to name a few. If your immune system is particularly good it will erode the cartilage around your joints, cause dramatic muscle and tendon damage and send the inflammatory levels in your body rocketing. Over time, you'll begin to notice the pain, the difficulty you have moving, the stiffness and weakness in your arms and legs and the profuse sweating resulting from internal inflammation levels. It's the human equivalent of being in a war torn territory, with broken buildings, destroyed infrastructure and the scars of war written on the faces of the people. Difference is, this is all happening to you and the icing on the cake, is that no-one else can see it.
Well that all sounds terribly gloomy, but there is some good news, as once the condition is identified, it can be treated. There are some wonderful scientists who, with years of research, have found drugs that can help with the treatment of the condition, although they currently can't eradicate it as yet, they can only make it more manageable. Unfortunately, because this disease is difficult to diagnose and it takes time to get the right levels of treatment, a lot of people arrive at a point of drug treatment, only after the disease has taken its toll. This usually means their joints have already been eroded, hence the label Rheumatoid ‘Arthritis’.
Arthritis is usually associated with older people, because over time, the body’s joints naturally start to erode. The key difference is that Rheumatoid Arthritis is an auto-immune condition that can affect you at any age, even babies! Anyway, I digress, as this isn't just about highlighting a condition, this is about ‘The Krypton Factor’. You may still be wondering how the two are connected or compare, so let me explain.
When you have RA, if you're unfortunate enough to have not been diagnosed until the joint damage is already apparent, there is a fair chance you'll eventually need to explore getting assistance from the Department of Work and Pensions, which is the governmental body used to decide who should and should not get Disability Benefits.
So remember the formula for the programme ‘The Krypton Factor’. It is based on a points system which dictates how strong and how mentally agile you are and awards you points based on your alleged ‘ability’. From the points awarded they declare you either the winner or, the ‘so called loser’.
Now let's turn to the DWP, who assess your physical and mental attributes, in order to decide whether you are a financial ‘winner’ or a financial ‘loser’. Just like The Krypton Factor, they test your ability to complete physical tasks and measure your mental acumen. They will watch how you walk, how you interact with people, ask you multiple questions about how you manage day to day tasks, look at medical records, reports and scans, then ask you to do certain movements to decide whether you are ‘Able’ or ‘Disabled’. If you are considered, through this points system, to be ‘Disabled’ enough, you will be a ‘winner’ and will receive a sum of money that is meant to assist you with your daily living and/or mobility needs. If you're not considered ‘Disabled’ enough, you will receive nothing and are therefore, a ‘loser’. Hopefully, I'm painting a picture and the title of this article is starting to come into focus.
We have therefore, reached a point of comparison between ‘The Krypton Factor’ and RA and although it may be a tenuous connection, I'm sure you can see where I'm getting the comparison from. In the DWP assessment, you are awarded points, but unlike The Krypton Factor, the points are awarded for physical and mental ‘Inability’. I see a number of fundamental flaws with this form of assessment and would like to list them below:-
As human beings, we all differ in our physical abilities. So how do you make an assessment that can at best, only be based on natural variables?
We all have differing mental abilities, hence the reason we are not all neurosurgeons, or astrophysicists. So if someone comes across eloquently when questioned, does this mean they are not intermittently facing issues with remembering or understanding?
Some of us cope with levels of pain better than others. Does this mean we’re not experiencing it, or just mean we adopt better coping mechanisms. Should we therefore be considered not to be in pain?
Humans are emotional creatures and if someone gets hurt, they can be emotionally affected by it. This can lead to conditions such as PTSD (Post Traumatic Stress Disorder) and in worst case scenarios, people require assistance from mental health professionals. Does that mean that people without PTSD or similar emotionally driven conditions, are not ill? Or do we accept that here again, there are variations/degrees of emotional distress.
In my opinion, what the DWP assessment does is try to de-humanise people, in order to facilitate weeding out those they consider less deserving. I have a degree of sympathy for them, as we live in a world where there are people without conscience, who will always try to get ‘something for nothing’, this makes the task a difficult one. I would however, suggest that applying the same principles as that of a game show, is not the solution to the problem. I also feel very strongly, that if health professionals have seen fit to give you treatments costing in the tens of thousands of pounds, there is a fair chance that they have done this because you are suffering from a particular illness and not because they have money to throw away. So why task the decision about your ability or disability to people who have never met you before, have no understanding of your personality or abilities and expect them to decide in under an hour whether you are worthy of assistance?
So, to my conclusion, I think it fair to say that in the RA vs The Krypton Factor game, it is clear to me that there is no contest. The Krypton Factor is a game where people stand some chance of winning, whereas with RA, if you win it's because your physical and mental ability is compromised, if you lose it's because you are unfortunate enough to have RA in the first place. As for the DWP, well that's a fight you're best to enter into with Superman at your side, just make sure he’s wearing his underpants on the outside, as the DWP will look favourably on anything that makes him look like he has been mentally affected.
Finally, I would just like to add that I have had the misfortune to have RA and to have been through the DWP process. I was fortunate enough to qualify for the Personal Independence Payment, without the help of Superman. Despite this however, I still find it hard to reconcile my mixed feelings about being considered one of the lucky few ‘winners’.
Anne Read
I Don't Understand Why Other's Have RA \"Flares\". My RA is Constant and Always Painful.
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