Friday, January 14, 2011

How do you push with negative leverage?

I'm writing today to ask you take a few minutes of your day to take a look at this blog: One Month Before Heartbreak. 

One month from today Parliment will be slashing Britain's DLA (Disability Living Allowance).  Valentine's Day.  As I live in the US, this will not directly affect me in a financial matter, but I am strong affected nonetheless.  For those of us in the US, this would be like Congress deciding to ditch Social Security and implement a whole new system.

From what I have read, the new system plans on cutting DLA from 25% of those who receive despite the numbers of those defrauding the system being something like 3%.   So that's 22% of of the people who require financial help from the government to live, as deemed so by that government, who will be dropped.

We are the one group who can't fight back like others.  I get excited when I can put my socks on in the morning--I'm not in a position to participate in a march or a rally.  I can't stand outside a government building holding a sign.  I can't stand in a crowd so the media can show how many people will be affected.  When nurses or teachers have their pay cut, they can strike and people feel the lack pretty quickly.  What can we do?   

I am disabled.  I am a "drain on the system."  Am I just some lazy bum, who isn't really that sick?  Hell no, I am not.  There isn't much I'd like more than to be able to work.  Would the US economy be the tiniest bit better if I didn't exist?  Sure.  Does that give the world the right to ditch me?  Is that the message we want to send?  Because anyone can be hit by a drunk driver or develop an incurable disease and suddenly find themselves unable to make rent.  Sure, it's inconvenient for everyone else that there are people who need to be cared for, but wouldn't it be even more inconvenient to find you suddenly are unable to tie your shoes at the age of 23?

Really I can only speak from my experience of applying for both state and federal aid in America.  If you haven't gone through it, you can't understand it. 

What's the big deal.  It's just filling out a few forms, right?

Well no, not really.  First off, it's letting go of the hope that maybe things will be better next week.  Maybe next year you will be feeling better.  Maybe you'll be able to work in a few months.  You just hit a rough patch, it won't last.  At least in the next 5 years you'll finally be better.  You have to admit to yourself that's not the case.  That you can't and you won't and you need help.

So, yeah, you fill out the forms.  Most aren't hard forms in terms of intellectual difficulty, but it's never easy putting down, income for the past month? $0. 
For the past year $0. 
Do doctors believe your condition will ever improve?  No.

And then there are the hard forms.  The 40 pages of invasive questions.  
Describe everything you do on a typical day.
Do you have difficulty using the toilet?  How?
Can you cook for yourself?
Make a list of things you used to be able to do, but can't anymore.

They need to know everything you do and it makes me feel overly exposed.  Just try to stay positive while highlight just how awful your situation is.  Rubbing lemon juice on the wound. I've done nothing wrong, but it makes me feel like a criminal.  My old case worker often accused me of lying and would put down different information than what I had said.  

Then there are the phone calls.  I am terrified to pick up the phone when it rings.  My heart leaps into my throat every time without fail.  It's going to be someone who wants to talk to me in cold, disinterested tone about this thing, this disease, this condition that has turned my life upside-down.  But to them it is just paperwork.

I live in fear of more paperwork coming in.  A denial, a change, a glitch, yet another form.  Going to court to appeal the decision.  I was "lucky" in that I was deemed so sick I didn't need to have a medical exam by their doctors.

And once you've been approved, it doesn't really end.  They reevaluate every so often.

Now--everyone in Britain who has fought this battle and finally won, would have start all over.  Jump though different hoops with the knowledge that they plan on cutting a fourth of you.  This is unacceptable

My heart goes out to all of you that will be directly affected by this. 


  1. Thanks for this show of support from cross the pond; it's great to see and I hope the Powers Wot Be here take notice.

  2. Thank you so much for this support it means a great deal. I have an indefinite award of DLA or should I say had! In 2013 perhaps they will think my disability will disappear of its accord. The problem I see is that doctor's who will be completeing the awards will simply not have sufficient knowledge of EDS. Most don't. Specialists are rare. Because we appear mobile when in fact it is that very mobility which cripples us I fear this medical. Not because I am fraud - oh no just because I cannot believe even those of us with EDS will be at all understood.

    Something I know you understand. Thank you for caring.