DEPARTMENT FOR SNAKES & LADDERS?

Fionn is 60, and has two long-term conditions for which there are no effective treatments. He wanted to be able to call on a social safety net; the best thing on offer at the moment seems to be a spectacularly uncomfortable hammock.

 

I’m exactly the same as anyone else who’s gathered up a lifetime of training and experience. I have a lot of skills. People come to me for advice. They offer me work. They offer me money to do that work.

 

And I can do the work, but it makes me ill. I don’t mind; I’ve always been ill, and I love my work. I just have to stop every now and again till I get better, then I can do some more.

 

Now that I’m older, those pauses have got longer. I might work for five months and have to stop for another four. The trouble is that when the income stops, the bills don’t. I live alone, so I have to claim benefits.

 

When I do get ill, it can be sudden and severe. One day I can be leading a seminar, the next I can’t fetch a bowl of cereal without help. What I need at this point is a benefit system that that can cushion me during those down times, and enable me to get back to work again as soon as my health allows. Instead I’m faced with a disability benefit system that appears to be based on bizarre assumptions:

 

“Disabled People Will Avoid Claiming If You Make It Inaccessible Enough

 

So, I have to scan a 50-odd page ESA booklet because I can’t write by hand, type 6,000 words, print it out, and then transport it a mile to a post box.

 

Things Medicine Can’t See Are Likely Fake

 

So, I have to have to demonstrate the invisible, to someone who’s been told I’m probably lying.

 

“Ill People Can Stay In Work If You Just Make the Alternative Unpleasant Enough

 

So, the first 13 weeks of my claim are paid at such a low rate that I can’t afford to heat my home, fund my special diet, or keep on the business services that mean I can return to work easily in future. The stress of the mounting debt delays my recovery.

 

Ill People Either Get Better Or Die

 

 

Because neither outcome has occurred I will have to repeat the whole miserable cycle over and over again, year after year, even though my condition(s) has not changed.  And who does this benefit?

 

 

So why don’t I just use the Permitted Work Scheme? It allows me to work a few hours a week, and even to keep some of the money. I thought it was a great idea when I heard about it. Then I asked for the form.

 

What is your job title?

“It depends. Every project I take on has a different title. I’ve been working since I was 15, and I can do quite a lot of things.”

 

How many hours per week do you work?
“I’m self-employed. I can’t work consistently, so I can’t build my business up, and I never know how much work I’m going to be offered. I might go three weeks without a call, then get several offers at once.”

 

How much do you earn?

“It depends who I’m working for. My average pay’s a bit low for someone with my experience, but I do sometimes get well-paid projects, especially if the client’s desperate for help. But I’m also keen to support new businesses that can’t offer much. So, anything from £15 to £45 per hour.”

 

I was warned against saying I that can earn more than minimum wage by a welfare benefits officer, who told me it may lead to questions about why I’m in the Support Group.

It’s deeply depressing that DWP still hasn’t realised that severe disability doesn’t preclude academic achievement or good business skills, but I saw his point. Trouble is, I can’t lie about my earnings, yet clients would think I was mad if I asked them to pay less. And there are now no specially trained Jobcentre disability advisors to build relationships with individuals and gain an understanding that they’re chronically ill, not trying to play the system.

 

If I can’t return to my Employment & Support Allowance claim when I get ill – without a financial punishment for trying to go back to work, without having to write the same 6,000 words on the same form about the same conditions, and without another stressful and humiliating assessment – then it’d be lunacy to keep going back to work.

 

Why did I spend years doing it? Truthfully, I don’t know.

 

But I’ve had enough now. My talent, my determination, my courage, and my optimism are no match for public policy that confuses equality with treating everyone the same, and where my disabilities are regarded as excuses put forward by work-shy scroungers (and where a 40-year continuous work history evidently doesn’t suggest otherwise). It’s beyond the realms of possibility that either the welfare system or employers will begin properly supporting disabled people before I retire, so I’m taking the safe option now.

 

I’m giving up trying.

Author: “Fion”

For further information please see report chronic illness citizenship mobilising collective voice social change

#DRILL HASHTAG FEED

Tweets from @drill_uk

Spinner Loading new posts...
welshflier welshflier @welshflier

@CommCats Very well. It’s time for a @Barod_CIC and @CommCats catch up as we are doing something right up your stre… https://t.co/tEq6T0jaCr

1 week ago
@CyranoKelevra

Loski – Call me Loose 🔥🔥🔥

C’est trop ! #DrillUk

2 weeks ago
Barod CIC Barod CIC @Barod_CIC

Four out of five on the train to Ty Glas for a #DRILLUK meeting with @AllWalesPF. Pick up 5th at Neath. https://t.co/F5l4ODFSfX

3 weeks ago
Rosie Tyler-Greig Rosie Tyler-Greig @RosieTylerGreig

Fab day spent at Stormont with @drill_uk team. Heard from funded projects, planned next steps, & talked about the… https://t.co/0ExnUL85yf

1 month ago
Disability Action NI Disability Action NI @disabilityni

.@drill_uk have all arrived safely in Belfast. Too many to tag! We’re meeting in @niassembly so thanks to @Kelmba f… https://t.co/WhFgTNeBJU

1 month ago
Disability Action NI Disability Action NI @disabilityni

Looking forward to all the @drill_uk peeps arriving to Belfast for team meeting tomorrow. Sun is shining and Karen… https://t.co/sXaGYO38GC

1 month ago
EgoDesire EgoDesire @rosalieedge

Looking forward to hearing from our peer researchers presenting our supported decision making research project find… https://t.co/IwjYKsrtu4

1 month ago
EgoDesire EgoDesire @rosalieedge

Massive well done run director Barbara – our #MencapNI #drilluk project peer researcher – and everyone else involve… https://t.co/rPRTP6rIPH

1 month ago
EgoDesire EgoDesire @rosalieedge

Honored to have been involved in such a worthwhile project, thank you #drilluk and @BigLotteryFund for making this… https://t.co/wxaWokksqr

2 months ago
EgoDesire EgoDesire @rosalieedge

Very proud of Barbara too who also spoke well about her experiences and what being involved in this project meant t… https://t.co/pDLCtVBKK1

2 months ago
EgoDesire EgoDesire @rosalieedge

Very proud of Aine who gained her first paid job as a peer researcher as part of the #drilluk supported decision ma… https://t.co/M05qLCFE1L

2 months ago
EgoDesire EgoDesire @rosalieedge

Really enjoyed the launch event for #drilluk supported decision making with peer researchers from @Mencap_NI and… https://t.co/KC0BDi4CGS

2 months ago
Dr. Maria Berghs Dr. Maria Berghs @MariaBerghs

Many thanks @SickleCellUK and their service users for their advice and insights today in London. #sicklecell #employment #DRILLUK

2 months ago
AVA AVA @AVAproject

RT There’s still time to sign up to the 9th July conference ‘Tackling Violence and Abuse Against Disabled Women and… https://t.co/POcbNaMXpf

2 months ago
Bronagh Byrne Bronagh Byrne @BronaghByrneQUB

The end of an incredibly productive week with partners on #drilluk #deaf #access to #justice project. Lots of ideas… https://t.co/ZzkmJIaboM

2 months ago
Disability Research Disability Research @QUB_DRN

Retweeted Bronagh Byrne (@BronaghByrneQUB):

Excellent first meeting of our #deaf advisory group tonight for our… https://t.co/7VGuoSKMsT

2 months ago
Bronagh Byrne Bronagh Byrne @BronaghByrneQUB

Excellent first meeting of our #deaf advisory group tonight for our #drilluk access to #justice project! Determina… https://t.co/7rXhT38r5i

2 months ago
Bronagh Byrne Bronagh Byrne @BronaghByrneQUB

Day 2 of project partners visit – knowledge exchange and opportunities for promoting #deaf access to #justice with… https://t.co/RPRyUPjRnS

2 months ago
WildStar Unknown WildStar Unknown @WildStarUnknown

Comment éviter les bans des feds look at this ils sont tros astucieux 😂😂😂😂😂 #ukdrill #drilluk #drill https://t.co/pxCYtnfEnE

2 months ago
Disability Research Disability Research @QUB_DRN

Retweeted Bronagh Byrne (@BronaghByrneQUB):

Day 2 of project partners visit – knowledge exchange and opportunities… https://t.co/bBs4qtvAln

2 months ago
Bronagh Byrne Bronagh Byrne @BronaghByrneQUB

Day 2 of project partners visit – knowledge exchange and opportunities for promoting #deaf access to #justice with… https://t.co/3njhS3qlq8

2 months ago
Rosie Tyler-Greig Rosie Tyler-Greig @RosieTylerGreig

Well done @VOXSCOTLAND @StrathIPPI for launching @drill_uk funded research on public & civic participation of peopl… https://t.co/M9lnsON0zE

2 months ago
The Foster Care Co-operative The Foster Care Co-operative @FosterCareCoop

We’re SO pleased to be involved in current research with @worcester_uni into the potential barriers that stop peopl… https://t.co/5MKWsHIfhw

3 months ago
Disability Research Disability Research @QUB_DRN

Retweeted Bronagh Byrne (@BronaghByrneQUB):

Looking forward to attending this public meeting with @PSNIFermOmagh t… https://t.co/n9FDDHLxyp

3 months ago
Bronagh Byrne Bronagh Byrne @BronaghByrneQUB

Looking forward to attending this public meeting with @PSNIFermOmagh this evening. V timely for our #drilluk proje… https://t.co/FkOGwF2P7R

3 months ago