“The Daily Mail must hate me. I have
(foreign) carers making my sandwiches”
I’d thought most campaigners knew Lucy, even though she’d
been too unwell these past few years to write much, but perhaps that is just
because, for me, Lucy was such a huge part of campaigning. She was involved with
debra UK often attending awareness raising events and meeting all sorts of
celebs. Jon Snow and his snazzy tie & sock combo were a big hit, Cameron
less so. I could never do justice to the Lucy story about the Prime Minister, Sean Bean
and backsides, so I hope one of her other friends will share that.
(Updated thanks to Kate Spector - Lucy's storify of (not) meeting David Cameron. The photo speaks for itself)
 |
| Lucy sat in her wheelchair at a Downing Street event, Sean Bean studiously looking at his nails and Cameron ignoring everyone |
In 2009 Lucy set up a group blog to review tech products for
accessibility - the reviews we wrote were not extensive, but Lucy managed to
bag herself all sorts of free tech which may have been the whole point! She loved
food too – that and technology were her two big writing interests.
“Jamie Oliver's remarks about people
on benefits eating cheesy chips is unfair. I'm on benefits and I prefer chips
with aioli.”
For the first few years I knew Lucy, through blogging and later
twitter, that’s what we talked about. We bonded as we both had connective tissue disorders – they had vastly different impacts on our lives, but still all down
to fundamentally workshy collagen. We traded advice on technology and pain
control.
But then, in 2010 things started to change for Lucy. She was
one of the first and most impacted by the Coalition’s welfare ‘reforms’.
Initially I assumed Lucy would be ok. So did Lucy. David
Cameron made many promises about protecting the most vulnerable. And there was no
arguing that lovely, clever, tough little Lucy was that.
When the government changed and immediately announced
sweeping cuts to social security, Lucy was one of the first people to get
involved with
The Broken of
Britain and later the
Spartacus
report. Living in Camden she was able to attend
The
Hardest Hit marches in person, nag all her journalist contacts and wrote
as many articles as she could.
Disability and welfare campaigning have become a
powerful movement in the last couple of years, but earlier in the parliament
there was just a small group of people desperately trying to get the message
out and all too aware that not all of that few were guaranteed to live long
enough to see the next election.
Lucy was one of those I worried about most. People
with
Recessive
Dystrophic Epidermolysis Bullosa die so very young and that made Lucy’s
situation so much more urgent. She didn't have the luxury of years to wait for
things to improve.
There are two stories of Lucy’s to be told; the strong young
woman with a naughty sense of humour who faced life full on with an awesome
dignity, and the terrified girl who
feared losing the independence and life she fought so hard to gain. I have
agonised over whether it was right to tell that second story here. But Lucy
wanted to tell her story, it became the focus of her writing both in
the articles she
published on The Guardian and the emails she sent. If I am honest, what Lucy
went through drove much of my campaigning. She was one of the first to be
impacted by the government’s housing changes and it made it very clear that
whatever promises had been made, the government had no real intention of
protecting the most vulnerable. How could they when they were doing this to
Lucy?
Lucy hated the whole butterfly thing and she was right to.
Although its an understandable analogy that people with EB are sometimes
referred to as ‘butterfly babies’, their skin and internal tissues being more
fragile than a butterfly’s wings, its schmaltzy and Lucy was never that. Witty,
cheeky, and the sweetest character, but never schmaltzy. She was more like a
little wave, her incredible force of strength hidden under the surface so all
you see is sunlight glinting as it ripples across a pond, changing everything
and everyone she came into contact with for the better.
EB is a uniquely painful and cruel condition. The skin and
internal organs are so fragile that even a light knock or bump can cause
terrible trauma. Morphine is required for things like nappy changes and parents
are unable to indulge their natural instincts to hold their babies as close as
they want when they scream with pain because it can damage them.
It was typical Lucy that she referred to the fentanyl
suckers prescribed for pain as her ‘crack lollies’. For a while during 2010 and
2011 they helped keep the worst of the pain at bay and Lucy poured her characteristic
determination and passion into writing,
calling
out politicians
for an
increasingly
common
bullying
attitude
towards those on disability benefits.
But
what not as many people knew was the extent to which Lucy’s life had been
thrown into turmoil, fear and confusion by the changes to housing benefit.
Although she became entitled to a two bedroom rate, once the rate reductions
had taken effect that was less money each week than she had previously received
for the one bedroom rate and Lucy knew she had to move. Leaving central London
wasn’t an option, Camden was ideal for her to reach St Thomas’s hospital
quickly. It was also vital for her Dad Ted, as it meant he could get from the
family home in Rotherham to Lucy in not much more than 90 minutes. She couldn’t
move to a cheaper suburb an hour or so away, that was too far from the hospital
she needed and too long for her Dad to reach her when she needed him.
Around the same time she had to reapply for Disability Living
Allowance, the DWP lost her first set of forms and she didn’t know where she
was going to live. This was all in 2011 and the wider understanding of the
impact of these cuts, in particular how to deal with them on the frontline, was
not really off the ground. But for Lucy, and those of us frantically trying to
find a way to help her, the impact was all too obvious.
Lucy wrote this to David Cameron as part of a campaign on
the 17th September 2011.
“I have never felt
lower.
Because of changes to
housing benefit, I've been reduced to a worrying mess. I face the possibility
of being moved out of my flat that has an extra room for when I need a carer
because the local housing allowance is dropping so much.
I'm entitled to a
two-bedroom rate of housing benefit, but it's dropping so much, it will be
lower than the one-bedroom rate I'm currently on.
I'm too severely
disabled to work. I cannot walk far, my condition is extremely painful, and I
face unpredictable fluctuations in my disability where one day I may be unable
to swallow properly, be able to get onto my feet, or even see properly. It is
difficult enough to look after myself on a day to day basis, yet you are making
it harder.
I receive DLA, Income
Support and even Severe Disablement Allowance. Yet despite being acknowledged
as one of the most deserving recipients of housing benefit, the office who deal
with my benefit do not understand why I am to be one of the worst off, with no
exception.
This morning I listed
ten items to sell on eBay. These were presents I received last Christmas and on
my last birthday. The items I am selling are two well made winter jumpers, some
DVDs of films I enjoy, and three handbags (from high-street stores). I am looking
around for other things to sell, as times are hard enough without the impending
drop in housing benefit. I don't have anything of big value I can sell, and
although I love the clothes and watching the DVDs I am selling, I have nothing
else nice that anyone else would want
You and George Osborne
said you would not leave the infirm without help. Well you've let me down, and
many others too. You have gone back on your word, and you are no man of
honour.”
As always Lucy put it perfectly. Where is the honour in
promising to protect the most vulnerable, a promise Lucy had understandably
thought would apply to her, when it was clearly a lie? A lie that led to a
beautiful young woman in the last few years of life feeling so afraid about how
she would pay her rent that she listed her Christmas presents on eBay.
Quietly, behind scenes, people rallied to help. Not the
politicians who made those false promises, but others. In typical Lucy style
she described her MP as
“like a nice old bloke (a bit like
the other Attenborough brother who does the acting). He wore a cuddly blue
jumper too (I didn't cuddle him).”
We got her into a trial housing advice project being run in
by neighbouring constituency, her case was raised in the House of Commons, huge
amounts of medical evidence were collected, checked and checked again. Lucy’s
condition spoke for itself, but still we got it all reviewed by an Atos
assessor to make sure it spoke the language of the DWP.
Eventually the housing situation was patched together, her
DLA approved and Lucy moved to a more accessible flat where she could still
access the beautiful Bloomsbury squares she loved in her powerchair. But that
fear and anxiety ruined a whole year for her, a year just as she was becoming
ever more frail, a year she didn’t have spare to be spoiled.
What happened to Lucy is as much a story of how life changed
for disabled people during the 2010-2015 Conservative/Liberal Democrat
government as it is a story of a remarkable young woman who in her all too
short time here demonstrated huge honour and dignity in everything she did.
I’ll never forgive the damage this government did to Lucy –
not so much the problems with her housing, or money shortages, but the brutal
lesson they taught her about value, worth and honour.
But I’ll remember Lucy, as she was the last time I saw her –
speeding through the Brunswick Centre in her powerchair, too fast to catch up
to, as she would have described it 'flying like a squirrel on wheels', crack lolly in situ,
shouting ‘go faster you piece
of shit’.
 |
| Photo Credit - Sarah Lee, The Guardian. Photo is of Lucy Glennon a young woman with pale skin, dark hair, glasses and big blue/grey eyes |
“I can confirm it's not possible to twerk in a wheelchair. It
looks more like you have an itchy backside. You're welcome.”
