Mia Austin is a young woman from the Wirral. In 2009 when she was just 21 and working as a travel agent Mia suffered an enormous stroke and developed locked in syndrome. This means that although Mia can see, hear and understand everything going on around her she cannot move or communicate without moving her eyes. Local people have fundraised for Mia so she can live at home with her family and she has some computer equipment which allows her to write poetry. Mia has just written a booklet 'hot potato' telling the story of her life
Like any young person Mia can be frustrated by technology that isn't fast enough, but unlike most Mia's computer is literally her lifeline to the outside world. Mia needs a new computer and a specialist physiotherapy machine so she can continue having proper rehabilitation at home. These two pieces of equipment cost £23000 and £7000 respectively.
Mia's website, Mountains for Mia has more information & details of how to donate http://mountainsformia.co.uk/index.html
There are two bills scheduled for debate in the House of Lords in the
near future, at first glance they may seem completely unrelated, but in
fact are inextricably interlinked - social care and assisted dying. The
vast majority of rules and regulations which govern the lives of
disabled people are legislated for by those without disabilities,
although there are a handful of disabled Peers or MP's, these two bills
are no exception from that dissonance between those who make rules and
those who have to live by those rules.
Social care is
currently in a precarious state - a system that was already stretched to
breaking point prior to the change in government is fracturing at the
seams from the cumulative impact of austerity and ignorance. When social
care is mentioned in the media the primary focus is always on the care
(or lack of) provided to older people, but working age disabled people
make up a third of the total recipients.
Of these working age disabled people, those with the most severe
disabilities who were previously able to access the ILF to match the
funding provided by their local authority, will all be funded fully from
their local authority, who of course will not be provided with a
commensurate increase in funding from central government, but will have
to attempt to accomodate this extra cost burden from within existing
adult social care budgets, which are being reduced by an average of 28% by 2015.
Accessing
social care as a working age disabled person is far from easy - it
involves a lengthy, complex process of assessments, tick boxes and in
most local authorities a pretence of choice. In reality what that tends
to mean is that the disabled person only has choice and control over
their life if their choices match those their social services department
deem acceptable. This means that even before the full impact of budget
reductions to Local Authorities, the closure of the ILF and other
welfare cuts impacting on individuals and communities the vast majority
of adult social services departments are breaking under the strain. Once
past 2015, factoring in the full impact both of budget restrictions and
the potential loss of income to Social Service's departments currently
paid by charges from the care recipients DLA award as disabled people
move through the new PIP assessment, which the government predict will
be available to 600, 000 fewer disabled adults, the situation will
become catastrophic.
So, what does all this have to do
with assisted dying? Its simple - quality of life. We can all empathise
on a very human level with people like Tony Nicklinson. Tony felt his
life as a quadriplegic was intolerable and before he died of natural
causes, he campaigned for the right to die on his own terms. For me,
there is a particular, personal concern about assisted dying and high
level spinal cord injury - the instability in my neck means that such an
injury is more likely for me than the average population. This means I
have considered how I would personally feel in such a situation. The
only honest thing I can say with certainty is that I do not know how I
would feel about facing the future with such a significant disability,
and that I hope, but can't be sure I would eventually adjust to the
situation and find a new, different quality of life. But I don't know
that - it could be that like Tony I would find the situation unbearable
and be desparate but unable to end my own life.
Despite
that, I still firmly believe that legalising assisted dying in the
current socio-political climate is dangerous and should be prevented.
The 'social model' is a theoretical model created by disabled people to
demonstrate that it is actually an inaccessible society which causes
disability, not the primary, medical model based idea that impairment is
caused by failings on the part of the individual, ie disease or
disability. The social model does not seek to cure, but to explain that
with the removal of barriers to access, participation in society
increases consequentially. Although the social model can be
controversial amongst disabled people, applying its inherent principles
to policy making is one way of making them as accessible to as many
people as possible. Improved physical access doesn't just benefit
disabled people, but if done properly, everyone - older people and
parents with young children.
It can be argued that
assisted dying sits firmly within social model territory - if a disabled
person requires access to live independently then the assistance to end
their life is as much a right as the assistance to live their lives.
But therein is the inherent problem with both social care and assisted
dying - there is currently no easily enforceable, statutory right to the
care, equipment and financial assistance disabled people need to live a
truly independent life. Within a rights based framework the right to
die would fit alongside the right to live - after all being born and
dying are the most natural part of any human life and with the correct
assistance disabled people can be enabled to make that choice for
themselves just as they can be enabled to parent, shop, swim or work.
This
brings us back to issues surrounding quality of life - with the correct
support to live an independent, self determined life disabled people
can make their own value judgement on their quality of life. However,
with many disabled people no longer qualifying for welfare benefits or
social care that quality of life is impaired by not having the right to
the support needed to live independently. It can be argued, successfully
I suspect, that without that right being present there is an element of
duress in every situation that might lead to assisted dying. As Lord
Scarman described so well in relation to economic choices within
contract law;
"The
classic case of duress is, however, not the lack of will to submit but
the victim's intentional submission arising from the realisation that
there is no other practical choice open to him"
This
element of choice is critical, especially within the framework of
austerity. Consider what makes most people feel their lives are worth
living - being a member of a family, having friends, being able to work,
to socialise, to have hobbies or interests. Whatever those individual
choices are they are too an extent universal - the security of those
factors is what makes most of us happy. Lord Scarman is talking about
contractual decisions, but it applies perfectly to assisted dying
because what that is really about for most people is practical choice.
The
government have made certain practical choices to deal with austerity -
they have chosen to place the burden of cuts on the most vulnerable.
This in turn affects the ability of individuals to exert practical
choice and control over their own lives. Without sufficient support to
access society, to participate in everyday activities quality of life is
severely reduced. If the practical choice is available and enforceable
to have the support to access all those essential areas of life, then
the nature of that individual value judgement on their quality of life
changes. Without that practical choice there is an inherent element of
duress in every decision about living, let alone dying. Within the legal
framework surrounding economic or contractual decisions, the contract
is considered to be void if there is an element of duress, it does not
take an enormous leap to understand how that element of duress present
in decisions about assisted dying should equally mean the decision is
considered void and therefore should remain illegal.
The
fear of becoming disabled is widespread in society, disabled people are
used to hearing people tell us that 'they would die' if they couldn't
'walk, run, swim, work' etc. The reasons for this are complex, partly
based upon fear of the unknown and the prejudicial attitudes to disabled
people inherent in society. Its also understandable, less than 10% of
disabled people are born with their impairment, the vast majority will
become disabled in adult life, whether via accident or more commonly
illness. Becoming disabled is distressing and challenging, but the vast
majority of people go through the stages of grief and eventually learn
to be happy with a very different life than they may have expected.
Different can often mean more rewarding.
That
understandable fear means that most people do not realise that living
as a disabled person can be a happier, fuller life than it was before
disability. It means that people see death as a better option, not
knowing that disability is just one of the many experiences life throws
at people, and that it is how we as individuals are able to deal with
those experiences which most influences that qualify of life.
Today is the eighth annual Blogging Against Disablism Day (#BADD) hosted by the fantastic Diary of A Goldfish.
It will be my seventh #BADD and I've watched with interest and sadness
how the focus of many of the blogs written for the day have moved away
from independent living to the impacts of austerity. Cuts to welfare
impact human beings, particularly so upon disabled people. Quite
literally, when the government cut, we bleed. The consequence of
increased poverty and exclusion from the world is one issue, but when
put alongside the increased focus on working it is quite another. What
this means in practical terms is that it was quite bad enough for
disabled people when all we had to deal with was exclusion - it is
frustrating to be unable to access the world because you are excluded by
that world, but a terrifying Orwellian nightmare to be excluded,
blamed for that exclusion and expected to participate more fully.
So,
until such time as all disabled people have a legally enforceable right
to independent living I will, albeit reluctantly, remain opposed to and
campaign against assisted dying. I will put my time and effort into
something which would benefit all our lives, where the right to
assistance to die is built into that framework of the right to live, where if assisted death is an individual's choice it can be made freely and without duress.
My form had to be returned by April 8th so I was quite surprised to get a phone call from the DWP so quickly - a nice lady rang yesterday morning. The nice DWP lady seemed a bit peturbed by my voice loss* and kept asking if I was well enough to speak to her as she could call back. Having not heard why she was phoning at that point there was no way I was letting her go without telling me what the call was about, I'd have been hysterical all weekend.
So, through croaks, coughs and splutters the nice lady read out her script and told me that I'd been found to have such significant disability that I've been placed in the support group, to be reviewed in April 2016. I asked her a few questions, but had to wait for the right part in the script she was reading - apparently they aren't allowed to deviate from that even when asked a question. Mostly it was ok, but there were disturbing implications in the script - I'd been found too sick/disabled to be expected to participate in any work related activity, but I could always 'volunteer' at the Jobcentre if I want. Which is slightly odd because volunteer and jobcentre aren't exactly words I'd naturally associate with each other...it took me a while to work out it did not mean that the jobcentre would support me with actual volunteering work, but that I could volunteer to erm, I'm not sure actually...be sanctioned on a work programme?
Once the relief settles down a bit I'll go through the inevitable psychological consequences of being deemed so disabled that even in the current climate the DWP don't feel the need to harrass me, but that isn't a new feeling, its always associated with successful benefit claims in relation to sickness or disability. It's strange - however frightened and anxious people are about claiming, however relieved they are by being granted eligibility to a particular benefit, afterwards there's always a strange readjustment process to a sickness or disability you've long adjusted to coping with as best you can.
But, I'm one of the lucky ones. I have a clear diagnosis of a genetic disorder to explain my symptoms. I have a supportive GP who was happy to supply the relevant medical evidence, I'm educated and I understand how to fill out a form, I have people in my life who I can ask for help and support through the process. Like I say, that makes me one of the lucky ones. Going through the ESA process is not like that for most people. And even as one of the lucky ones I've experienced so much stress from the process that its had a significant impact on my general health, which will take me time to recover from. If I knew I had to do all this again next year I would be in utter despair, but having three years gives me a level of security about my future and the freedom to continue either volunteering or hoping that eventually there might be a realistic way for people too sick/disabled to work consistently, even on a part time from home basis to use their skills to earn some money but not lose eligibility to the support we need. Once upon a time some of us hoped this would be the big change with Universal Credit, but the application of politics and ignorance to a once good idea has ensured that won't be possible.
I haven't had any contact with Atos at any point, so I can't really comment on their part of the process, other than having been told my application was assessed by them via 'scrutiny' which means that a decision can be made based on the form and submitted medical evidence without seeing the claimant face to face. Communications by phone from DWP have happened when they should do, including reminder phone call. Actually both ladies were lovely which helped, but in all the years I've had to speak to DWP staff as a claimant its the one's who aren't which stand out as the exceptions. Most have been kind and helpful. The new focus on jobcentres and work from DWP staff as part of their standard script is deeply unhelpful though and comes across as intimidatory even when the caller is pleasant.
Written communications however were a different matter. I had the latest version of the form to fill in and it was awful, worse than previous versions. There are tickbox questions which I couldn't work out what the answer was meant to be because the question was so poorly worded. There is no option on the mobility tick box to answer 'less than 50 meters'. As I'm an awkward type I wrote on the actual form that none applied, but only after a great deal of distress. Lots of people tick the 50m box because its the shortest distance but then of course it indicates you can walk 50m. This box comes up in discussions with claimants over and over again.
I can't stress enough how bad the tickbox questions are. With the boxes you can write in what you need to write, they are too small but most people know to use extra paper and attach it. But the tickboxes take more time and cause more distress than the free text answers.
I learnt that going through the process feels like Russian Roulette. I knew with utter certainty that my form had been filled out correctly, that I had hit various descriptors at various points and that the letter from my GP contained the exact information required to make a decision. Despite all that it felt entirely down to chance - would the Decision Maker understand the condition, would the Atos HCP have enough time to scrutinise the file, would it go direct to a face to face WCA because it was too complicated to make the decision. And of course that builds on the enormous stress and fear about the consequences of going to a WCA and how that might impact on the rest of my life, ability to remain in my own home due to impact on benefits by being found fit for work or placed in the work related activity group.
The biggest relief for me is getting a review date in 2016. I now have some security because I've got three years. The constant stress for people repeatedly being given awards of 12 months or less is breaking many people. Asking around other claimants many people haven't been told how long their award lasts so are living with the constant stress and anxiety every time the postman comes. Knowing is better than not knowing, even if its not exactly what you hoped you would find out, and ensuring that everyone is clearly given the date when they can be expected to be re-assessed is such a simple task for the DWP, but would make such a different to sick and disabled people.
*yes, again. I blame the mini weapons of biological warfare also known as nephew and niece!
I couldn't put it off any longer, if I'm to get my ESA50 filled in, collate appropriate supporting evidence and manage to post it back to the DWP in time, then the questions had to be answered regardless of my inability to sit up straight and focus.
Whilst I'm not a welfare rights advisor, I have a pretty decent working knowledge of how to fill in benefits forms and have plenty of people I can ask to help me - its much more difficult to fill in your own benefits application than someone else's. So, I recruited a friend who knows me well and could interject everytime I tried to insist I could do an activity by pointing out that actually, reality means I can't.
I'm often mystified by the time and attention paid to how distressing filling out an ESA form is...of course it is, so is filling out a DLA form, so was filling out the old Incapacity Benefit forms. Whilst ESA has the added extra stress of knowing the system is designed to redefine the level of sickness or disability which qualifies for social security support, applying for any health related benefit is a miserable business as its the only time in life claimants are forced to reflect on all the things they can't do and focus just on the negative. Even if the DWP sent out forms with kits containing fluffy blankies, hot chocolate and HCP's with tepid flannels to soothe our fevered brows as they assessed us it would still be a depressing process to go through because at no other time in life do people have to focus on how completely incapable they are.
From that you can safely assume answering the questions was a dismal process. There were tears, sobbing, snivelling and snot, with a side order of occasional screeching "I'm not that crap, I'm not, I'm not" while my friend patiently and consistently pointed out that I could not describe lying on a beanbag as a functional ability to sit up. Ok, so my friend is right, its not a functional ability to sit up and there aren't too many activities in life which don't demand an ability to sit and stand properly, or workplaces providing beanbags, naps and oramorph on tap, but I was in full blown ESA hysteria and didn't care. Fortunately my friend won and sensible answers were written which didn't include any "fuck you DWP, I'm awesome and can do everything, oh but please give me enough points for support group because actually I'm not too sure I can follow through on my can do everything committment"
The biggest source of stress was the tickboxes. OMG the tick boxes. Also, who the hell do the DWP get to write these forms, someone who only speaks English as a 15th language?! The tickboxes requiring a tick took more time to work out than any of the free text answers. The free text answers were depressing, but at least relatively straightforward to write - I have EDS, my muscles are exceptionally weak, this causes dislocations without trauma, pain, fatigue etc, but did I mention the OMG the tick boxes issue? I've got a law degree, I've had the odd article published in the national press, generally I think my language skills are reasonable, but could I work out what the right box to tick for the questions were? Could I heck. It was bad enough trying to work out whether the right answer was 'no' or 'it varies' but on many of the questions it was hideously difficult to comprehend whether a no answer meant I couldn't complete that activity or whether the question was so (deliberately) badly worded that actually answering no meant yes.
Most of the sobbing, shrieking incidents were prompted by tick boxes. Bloody, bloody boxes. I miss the longer forms, the longer forms with less bloody tick boxes and enough space to come close to explaining the issues meaning you're not fit enough for work.
But at least I now have an answer to go in each box. Ok, I might not like the answers and prefer to live in the cosy world of denial where I can tell myself I could totes be a Paralympian if I start training now, but that's not the point, there are answers. Now all I have to do is make sure those answers get taped into the right boxes and get to my GP so he can do a letter confirming that its all true.
That bit requires getting out of the house to work to other people's timing and not remaining horizontal on a beanbag convincing myself that makes me fully functional...
Its all a bit strange not being able to talk openly or on social media about going through my WCA, but I decided that if I did mention it in public while its going on that it might be someone ensures I have a 'text book' perfect assessment process. I feel I owe it to people like Karen Sherlock to go through this in the same way everyone does - like being launched into a game of roulette where claimants are the ball and its sheer chance as to whether things will work out the way they should. Not being able to use social media means not being able to get emotional support and advice as readily, but it feels like the right thing to do.
The dreaded brown envelope arrived, or more accurately I arrived to the brown envelope - having gone to friends for the weekend to escape the stress of social services refusing my entire support package, I got home to find the friendly DWP 'its time for your WCA' missive sitting there staring at me accusingly. Its safe to say the anxiety instantly returned and started to reproduce at a speed bacteria would be proud of. So far 2013 has done its damndest to beat me into submission, and the combined stress of a social care appeal at the same time as going through the Work Capability Assessment is not something I'm relishing.
A few days after the letter I had the promised phone call from the DWP to explain what was happening. Ever so nice she was, Gwen from the valleys and I'm sure she enjoyed hearing me yelp in pain down the phone as part of my spine made a bid for freedom. After a short delay due to the failure of DWP's computer system, during which I pondered how that boded really well for the imminent launch of Universal Credit, Gwen phoned back and we got down to business. Well, she did. I kept quiet and pretended I knew nothing about welfare to see what was I told. I was told that Gwen needed to explain the changes to my benefits, that Employment Support Allowance was to provide support to disabled people to work, which was an interesting scripted spin there from the DWP. Had I not known that ESA was also to provide support to people who are too sick or disabled to work I would have thought I was being told to apply for the wrong benefit. Gwen told me I had to fill in the form, that I was welcome to add as much extra evidence as I liked, but that I must be aware my benefits would be stopped if I didn't complete it.
Gwen went on to explain that I might have to attend a face to face work capability assessment, and that I should assume I'd have to go to an assessment because that was part of the process. She said that if I did have to attend someone would phone to arrange a time and day, that I could take someone with me to help but that if I didn't attend my benefits would be affected. Afterwards someone from the DWP would phone and give me their decision. She wanted to know if I had any extra access needs, so we had a slightly confused conversation (on her part) about ramp access and made sure she wrote down I was a wheelchair user. The final point was to ensure that if I don't receive the forms by March 15th that I phone to chase them up.
All relatively comprehensive, if through a DWP prism of 'you will attend, you will get into work'. So being a well trained disabled I made some phone calls, to my GP to arrange a phone appointment to discuss the form and to my physio to ask her to write a letter I can send in with the form. I've been collecting medical evidence for the last year or so from consultants who've seen me and stated they can't treat the problem because there isn't a treatment, but all those documents are more than six months old so can't officially be considered by the assessor.
I spoke to my GP this morning and asked if he would write a letter to support my application. He said I am to wait til the forms themselves arrive then pop in to the surgery and he'll dictate it there and then. I'm hoping this means dictate a letter not he'll fill the actual form in itself, but I'm very reassured by his attitude to the assessment so far. Although, I can't help but wonder what the point of an assessment process is for those claimants who are called in so their own doctor can go through the questions and provide evidence with them...that seems awfully close to an actual assessment to me.
But, what do I know? I'm just disabled and in receipt of welfare, asking someone like me to help improve the system would just be silly.
