Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Aug 27, 2013.
I underlined lots in this: too much to post I think.
Here are two bits:
The following is something that doesn't tend to get mentioned much:
The data is qualitative rather than quantitative (except for the numbers of people saying something) so no mathematics or statistics to understand which might suit many.
I have a reasonably large vocabulary (and with knowledge of some other languages I can sometimes guess the meaning of some words) but I sometimes find reading writing by sociologists challenging. They often tend to use big words and sometimes jargon; also I get the feeling that sometimes it is more important to sound impressive rather than aiming for clarity. Anyway, in this case, I found this article easy enough to read. The author is an independent researcher, who already has a PhD, so perhaps doesn't have to worry too much about trying to impress people.
The author is an ME patient herself (she says this) and this piece is completely "sympathetic" from what I recall.
Im glad to see that someone has wrote something on this.
I myself find that what I need to go throu to get any kind of gov benefit or help at all (it even happens with gov disability services), ends up worsening my condition due to the hell they put one under due to lack of understanding into ME. Im always put throu countless appeals and any assessment Im put throu takes 3-10 times as long as they are supposed to do (with lot of people having to back me up and lots of letters etc trying to inform people of the situation or correct things they've got wrong about it). I constantly have ongoing appeals/assessments with places (my current fight is with my states Disability department and after that I need to tackle some discrimination affecting me with another dept).
Im not in England but this issue around ME is throughout the world.
My application for disability here in the states in 2011 was turned down. It took hours to prepare the paperwork to get as far as I did, and I was in no condition to continue the fight. Ironic, isn't it, to be too sick to fill out the paperwork needed to get help. It's as if they make it that tough to weed out the weak, never mind what a person's need level may be.
In between my application and hearing back, I inherited several thousand dollars. While other family members bought themselves cars or invested, I lived on the money for over a year, and fought my way back to a healthy enough level to return to work. I give my gratitude daily for this miracle in my life that allowed me to survive.
No idea what would have become of me had that not come through.
I just know that I would rather pull my own weight financially than leap through the ugly hoops required to receive help. Now, I'm doing okay. Long-term, who knows? It is as fragile and precarious as ever, and you take it one day at a time.
If you do fight the fight till the end you are seriously completely broke and in financial ruins. The program was not intended to work this way for most people anyway. Someone that has worked 30 years and maxed out 401K, that should unfortunately become disabled is suppose to live a comfortable lifestyle, but they will deny you till you are indigent and in a position as to where if you were to become able to work again, no one will hire you.
You are truly guilty of wrong doing until you prove yourself innocent, which takes everything you have.
August59 So true! Did I forget to mention the doctor appointments required to "prove" everything? Yep, sure did.
Not to mention... you have to survive during the two-year "battle" waiting to prove you need help.
Two years? I'd be OVER THE MOON if it only took me two years. I'm past three years and might take another full year.
Two years, three years, who's counting if you have no income at all? Something has to give, and you certainly don't invest the time. You figure it out... NOW.
And for those who can't figure it out or do anything about it -- what? Starve? Be homeless? Not very good options. I've been without food, and I've been homeless with this illness. If it weren't for family and community stepping in, I don't know what would have happened. And both family and community were letting me know I'd better "solve" my issues pronto.
This thread points up an all-too-real Catch-22, caught between a rock and a hard spot.
There has to be a better way to help the ill make it in this world.
I thought this from Wikipedia provides interesting context for some of the difficulties faced:
A 39-fold exaggeration in the public consciousness towards the prevalence of benefits fraud would not be helping. £1 billion was the total for all fraud. In a previous post I discussed an updated source of 0.7% or £1.2bn. Most of the fraud money was from Income Support, Jobseeker's Allowance, Pension Credit, and Housing Benefit, whereas Incapacity Benefit only accounted for £10m (@ 0.3% fraud rate) and Disability Living Allowance only accounted for £60m (@ 0.5% fraud rate).
There is indeed a group reaping the benefits of claims that the sick benefit from illness. Its politicians and social commentators who get political or media mileage from such claims. For the media, its shock jocks who keep their job by vilifying the sick. For politicians, they score political points with those sections of society who need someone to blame, or are confused and looking for easy answers, or whose ideology matches the politicians who promote such nonsense. Maybe some researchers should be investigating them, finding out why they need to vilify and attack the sick? That would make interesting reading.
For politicians to make claims like they do about the sick and disabled, despite blatant evidence to the contrary and lack of evidence for their claims, I see three reasons:
1. They didn't do their homework - that makes them incompetent.
2. They do it anyway, despite knowing the truth - that makes them evil.
3. They do it because of blind adherence to ideology - what does that make them?
I am focusing mostly on the third option, but I am not unmindful of the other two. Do we really want politicians in any of those groups running a country?
Alex, you are being too kind to them.
There are only Options 1 & 2.
There has to be A way! The benefits systems seem to be more like lotteries than systems genuinely aimed at helping those in need, regardless of official targets.
Do they have the figures for how much they spend on tackling this minuscule amount of fraud? But I guess it's worth it if they can unite people behind them against such an unworthy bunch as us, by proving that they are doing something to help 'hard-working families' (I have often wondered whether this includes really industrious babies ...)
I incline towards 2. It's something that has been done throughout history - divide and rule; create an enemy and show your target voters how tough you are being on this 'enemy'. A certain Mr Hitler was a master of this black art.
I've corresponded with the author quite a lot in the past (have lost touch now) and have had no reason to think that she is not 100% genuine, and a nice, honest person. I'm very pleased to see that she has had this published.
For myself, the reason I continue over-exerting myself (and thus delaying/preventing any possible recovery), is fear of even greater stress from attempting to negotiate the benefits maze. I was on benefits while studying, as there was no way that I could both work and study while ill, and wanted to complete my studies to improve my long-term chances of supporting myself through work. It was very nerve-wracking waiting for those confirmations of continuation of benefit every year, and I used to shake and sweat filling in the long forms, terrified of making a mistake that would disqualify me.
The same author also wrote this paper a while back. I remember it in particular because the XRMV news had started by the time I read it and I thought how she would have to write another paper.
After my children both reached adult age or left home, I lost the Single mothers Pension which had helped me to survive seeing I wasnt capable of doing much work. I actually didnt go right away trying to claim Disability when I stopped getting single mothers Pension even thou I couldnt work full time as I knew it would be a NIGHTMARE to get the Disability benefits I should of been on, so it was the last thing I wanted to do (I was near phobic about the whole Disability process due to the how bad Ive been treated by those who dont understand this illness and just how much sicker I used to get from stress and effort).
So I ended up working but at a level in which I could of also actually been claiming government dole benefits as well, so I forfeited getting over $400 a fortnight for a couple of years (forfeited getting a health care card etc) as I knew how much stress Centrelink would put onto me. (I was scared to even try to go and get the Dole as I was worried I'd be offered full time jobs I wouldnt be able to take up and that is what did happen when I finally had no choice but to apply).
I was working only 9-16 hrs per week, not claiming the gov benefits with the money I was getting in and going without basically everything (never buying clothes, never getting breakdowns in my appliances fixed, I even didnt have a TV in that time, tried not to use electricity etc), I lived off of rice, potatoes (which were very very cheap at that time) and noodles cause I couldnt afford to eat much else during that time. I started growing my own food to supplement my terrible diet and was living off of handouts of others.
I ended up in trouble with the tax dept as they wouldnt believe that I was only "trying to" live off of that. They couldnt understand why I hadnt gone for gov payments so assumed I must of been getting more money and ripping them off so they put me under pressure and under investigation. (so I ended up in a very stressful situation with them so my attempts to avoid stress to avoid crashing further, well didnt work). I was even filmed by someone sitting in a car on the other side of the street. This car ended up being left in that location for a couple of days with what appeared to be a camera pointing at my house affixed to its inside mirror. I can understand thou why my situation of me not claiming when working so little, didnt appear "logical" to them.
Id like to add that I was correct and it was completely disasterous for my health having to go onto the dole while applying for disability and appealing over and over due to the knockbacks for a pension.
I went due to that from being able to work 9-16 hrs per week and was in a recovering mode (improving over time, , I believe I would of gone into a complete remission again had I not been pushed to work), to going into a major crash due to them forcing me to try to work more (under threat that I would be completely cut off of benefits which by that time after not getting much money for so long, I really really needed to have as I was very deep in debt by then).
It was this what Centrelink did to me, which lead to where I are today. not able to work AT ALL, not being able to care for myself so now having to have gov support services. Had I immediately got that Disability Pension which several doctors were supporting I needed or not been pushed under threats by them beyond what I should of been doing, I do think I'd be recovered again today. I hold them responsible for me being disabled today. Instead, Im now just a burden on the system and still in a worsening state due to the battles which are continuing (Im worsening again now cause I arent getting enough support hours throu DisabiilitySA, there is a good chance I may end up long term bedbound again).
taniaaust1 I liked your post in a good way. Hope you know that!
What a nightmare.
I, too, wonder about the tax man asking questions. I live on very little so I can keep work hours as short as possible. Anything is possible with the right motivation, and my motivation is having a roof overhead!
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