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.
Wednesday, May 01, 2013
Saturday, April 27, 2013
The Right Result #esa
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!
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!
Friday, April 26, 2013
Tick Box Torture #esa
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...
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...
Brown Envelope Roulette
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.
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.
Monday, April 08, 2013
Introduction of #PIP in the news
Steve Sumpter has done a great collection of media links and clips from today including the Radio 5 live debate I was involved in with Dr Stephen Duckworth from Capita
There is also an interview on BBC Radio Merseyside from earlier this morning which can be heard here (section starts 2hrs 6 mins in)
There is also an interview on BBC Radio Merseyside from earlier this morning which can be heard here (section starts 2hrs 6 mins in)
Wednesday, March 27, 2013
Deputy Speaker's Internship - Day 2
Day 2 started much as day 1 did - early morning whimpering, a cup of tea with a chaser of oramorph in the hope that it would reduce the pain enough so that my feeble whimperings when I sat down weren't audible to others. It may or may not have done the pain trick, but it did at least make the scoot across the bridge to the House of Commons much more 'ooh pretty' and the battle with the supposedly automatic wheelchair doors another nice man had to wrench open much funnier. I'm not sure what poor Alex made of my mumbling about morphine as I arrrived, as at this point in the experience I hadn't yet realised he knew absolutely nothing about my condition and had been told not to ask.
We started the day more formally with a cup of tea and discussion in the office, then we went off to observe a Work and Pensions Select Committee evidence hearing of user experiences of the work programme. That was a somewhat misleading title, as although there was lots of talking about experiences, there weren't any actual people who might have used the work programme present...just people who's job it is to somehow comment as though they are users of the work programme. It was very exciting to be in the actual room having watched so many of these hearings online, and hilariously weird to be tweeted by my friends suggesting if I just moved one seat along they would be able to see me on the live feed.
I would have liked to stay and see the whole evidence session - there were some very interesting points being made about the complete lack of information for employers or work programme providers in relation to disability - ironically some of the same issues Alex had experienced when he was working to put the intern programme together for the week. The particular scandal was that there was no point of contact for providers or potential employers to be given information about reasonable adjustments, how to help support people or even to speak to Access to Work. It's no wonder the work programme is less effective than not making any interventions, what on earth is the point of throwing endless money at something when its actual design prevents it from working?
However, all too soon we had to leave and to something even more exciting than a work and pensions select committee (yes, I really must work on the getting a life thing!) This was a wednesday, and so a PMQS day - the big draw of the week. Alex and all of Nigel Evan's team made huge efforts to get us tickets as they knew how excited we were about being able to watch that. To make it even more special we were able to go into the central lobby to watch the Speaker's Procession just prior to PMQ's and then were in the house for the feistiest, funniest PMQ's I've seen in a while. It is overwhelmingly loud in there and MP's of all parties are astonishingly badly behaved.
Then it was straight off to a grassroots football event sponsored by McDonalds. I was deeply disappointed that Big Mac's were not on the menu! Fortunately I'd mentioned my utter ignorance of all things football prior to going into the event, so when the nice, smiley man came up to us to say hello, Alex introduced him by name and explanation - it was Sir Geoff Hurst (who, for those as ignorant of football as me, apparently scored goals in the 66 World Cup) We had a chat about my 'swizzy pushchair' which he immediately apologised for calling a pushchair and explained he gets muddled up, partly because he's got young grandchildren, and partly because he spent alot of time pushing his daughter in her wheelchair when she was poorly. I explained that my Dad sometimes calls it a pushchair too, and that as he actually did push me in a pushchair that its an understandable dad mistake to make! I was sorry to hear that Sir Geoff's daughter had died, and we had a little hand hold empathy moment in the middle of the football reception.
If you're looking for football details from the reception...I don't have any sorry! But we did also meet some man called Pat who was quite handsome and apparently used to be good at football too, and there was a fascinating, inspiring woman speaking who was a volunteer football coach in addition to being a policewoman.
We finally managed to get some lunch at about 2.30pm in another of the subsidised restaurants, but for me the day was a real struggle and I'd had to duck out of the football reception briefly to take more oramorph.
The last event of the day was observing a debate on the privatisation of the probation service - it didn't last long as the division bell rang and all the MP's went off to vote, but the most interesting bit was how many of the issues relating to the failure of the work programme came up in relation to probation services, especially as the criminal justice and probation services spend so much time with people with mental health problems or learning disabilities. It showed very clearly that whatever the rights or wrongs of privatising probation, there isn't any point doing anything to it unless we have effective back to work support which can cater for a huge range of barriers.
I was really struggling with pain and fatigue so after we'd finished and I got to go and meet fellow campaigner Jane Young for the first time, its no wonder she was horrified by how pale I was! But, it was still a fantastic day and great to be able to talk it through with friends for a few hours afterwards.
We started the day more formally with a cup of tea and discussion in the office, then we went off to observe a Work and Pensions Select Committee evidence hearing of user experiences of the work programme. That was a somewhat misleading title, as although there was lots of talking about experiences, there weren't any actual people who might have used the work programme present...just people who's job it is to somehow comment as though they are users of the work programme. It was very exciting to be in the actual room having watched so many of these hearings online, and hilariously weird to be tweeted by my friends suggesting if I just moved one seat along they would be able to see me on the live feed.
I would have liked to stay and see the whole evidence session - there were some very interesting points being made about the complete lack of information for employers or work programme providers in relation to disability - ironically some of the same issues Alex had experienced when he was working to put the intern programme together for the week. The particular scandal was that there was no point of contact for providers or potential employers to be given information about reasonable adjustments, how to help support people or even to speak to Access to Work. It's no wonder the work programme is less effective than not making any interventions, what on earth is the point of throwing endless money at something when its actual design prevents it from working?
However, all too soon we had to leave and to something even more exciting than a work and pensions select committee (yes, I really must work on the getting a life thing!) This was a wednesday, and so a PMQS day - the big draw of the week. Alex and all of Nigel Evan's team made huge efforts to get us tickets as they knew how excited we were about being able to watch that. To make it even more special we were able to go into the central lobby to watch the Speaker's Procession just prior to PMQ's and then were in the house for the feistiest, funniest PMQ's I've seen in a while. It is overwhelmingly loud in there and MP's of all parties are astonishingly badly behaved.
Then it was straight off to a grassroots football event sponsored by McDonalds. I was deeply disappointed that Big Mac's were not on the menu! Fortunately I'd mentioned my utter ignorance of all things football prior to going into the event, so when the nice, smiley man came up to us to say hello, Alex introduced him by name and explanation - it was Sir Geoff Hurst (who, for those as ignorant of football as me, apparently scored goals in the 66 World Cup) We had a chat about my 'swizzy pushchair' which he immediately apologised for calling a pushchair and explained he gets muddled up, partly because he's got young grandchildren, and partly because he spent alot of time pushing his daughter in her wheelchair when she was poorly. I explained that my Dad sometimes calls it a pushchair too, and that as he actually did push me in a pushchair that its an understandable dad mistake to make! I was sorry to hear that Sir Geoff's daughter had died, and we had a little hand hold empathy moment in the middle of the football reception.
If you're looking for football details from the reception...I don't have any sorry! But we did also meet some man called Pat who was quite handsome and apparently used to be good at football too, and there was a fascinating, inspiring woman speaking who was a volunteer football coach in addition to being a policewoman.
We finally managed to get some lunch at about 2.30pm in another of the subsidised restaurants, but for me the day was a real struggle and I'd had to duck out of the football reception briefly to take more oramorph.
The last event of the day was observing a debate on the privatisation of the probation service - it didn't last long as the division bell rang and all the MP's went off to vote, but the most interesting bit was how many of the issues relating to the failure of the work programme came up in relation to probation services, especially as the criminal justice and probation services spend so much time with people with mental health problems or learning disabilities. It showed very clearly that whatever the rights or wrongs of privatising probation, there isn't any point doing anything to it unless we have effective back to work support which can cater for a huge range of barriers.
I was really struggling with pain and fatigue so after we'd finished and I got to go and meet fellow campaigner Jane Young for the first time, its no wonder she was horrified by how pale I was! But, it was still a fantastic day and great to be able to talk it through with friends for a few hours afterwards.
 |
| Photo shows Sir Geoff Hurst, a white man in a dark suit with a red tie leaning on a lectern as he gives his speech on grassroots football |
Friday, March 22, 2013
Deputy Speaker's Internship - Day 1
Having been sent a detailed timetable in advance I had an idea of what to expect we'd be doing when - and it was quite the packed schedule. I arrived in good time to get through security for 10am to find the wheelchair entrance full of buckets and the doors not working. The lovely security man quickly cleared out all the stuff that seemed to be related to trying to fix the entrance and got me in through the first door...which was when we realised that the other door opened in the wrong direction and the only way for the security man to force it open was to lean over me on the scooter. Fortunately he was awfully nice when I ran over his feet while scooting under his arm! I like to make an impression when I arrive in places, but marking someone's feet really won't make it onto any 'good impression' list.
Putting aside the trauma of inflicting actual bodily harm on a House of Commons security staff member in front of a load of armed policemen before 10am, things went better after that. We all met up with Alex who was in charge of our group for the time we were there, then went up to the Deputy Speaker's office where we met other staff members, and Nigel Evans himself to chat about the programme ahead over coffee. Then we were privileged to sit in on an interview with Nigel about the relationship between openly LGBT politicians and the wider rights legislation in those countries. It was fascinating to hear the candour Nigel displayed in answering the questions and I felt very strongly that many of the issues he was talking about in terms of acceptance were the same as those faced by disabled people. As he described his experiences I felt a mix of respect for him for speaking out so openly, empathy and hope that it can be, will be different in generations to come.
We were scheduled to go on to an Education select committee evidence session after that, but it had already finished so we went to observe the Culture and Sport committee for half an hour, then on to have some lunch in Portcullis House. I didn't have a PA with me, but the BSL interpreters were really good about checking if I needed any help and Caitlin who was also interning in Nigel's office was a huge help with all sorts of little things I couldn't manage.
In the afternoon we went up into the Stranger's Gallery so we could observe Nigel in the Speaker's role during the Opposition Day Debate. The seats to observe are mostly in really steep tiers, but the upper part of the gallery is wheelchair accessible. However, when sat either in a wheelchair or one of the more comfortable seats that fold away neatly into the floor eyelevel is below the window so its really quite tricky to see, when we discussed our afternoon with Nigel and his team later on he said that explained why I kept disappearing out of his eyeline during the debate! I could only hold myself up properly to sit up and see for very short periods of time before needing a rest. The debate was really quite challenging to follow, both in terms of our ability to observe and being able to understand it. Paul and the BSL interpreters found it especially difficult as the subtitle service wasn't working on the screen on their side of the gallery, and of course when it does work it is so far behind what's actually being said that its impossible to follow the order of business that way. I was trying to explain all the different taxes that were being discussed to Caitlin, who was from Tennessee- bedroom tax, mansion tax, 10p tax rate, spare room subsidy - it was all so complicated I can't remember what the debate was meant to be about!
It was an exhausting day for me as sitting is one of the activities I find most painful and tiring - watching a long, complex tax debate through the time I'd usually be napping was very challenging and we got to know one of the Stranger's Gallery staff especially well as he kept joking that he was going to go and get me a blankie so I could lie down! The fun fact about the Commons that I learnt that afternoon also came from Matt who explained to us the bench he was stopping anyone from sitting on was reserved only for police officers, but that police officers must not be wearing their uniform when they sit there. Westminster is a very odd place, full of all sorts of arcane but fascinatingly weird little rituals.
We finished the day with another chat over coffee about what we'd observed and then, exhausted though I was, it was time to go back to the hotel all too soon. I decided as I was in London I had to find my big girl pants and get brave enough to go places on my own...so instead of a cab I scooted back to the hotel on my own - it was so cold on the bridge I was still shaking back in my room under two duvets!
Putting aside the trauma of inflicting actual bodily harm on a House of Commons security staff member in front of a load of armed policemen before 10am, things went better after that. We all met up with Alex who was in charge of our group for the time we were there, then went up to the Deputy Speaker's office where we met other staff members, and Nigel Evans himself to chat about the programme ahead over coffee. Then we were privileged to sit in on an interview with Nigel about the relationship between openly LGBT politicians and the wider rights legislation in those countries. It was fascinating to hear the candour Nigel displayed in answering the questions and I felt very strongly that many of the issues he was talking about in terms of acceptance were the same as those faced by disabled people. As he described his experiences I felt a mix of respect for him for speaking out so openly, empathy and hope that it can be, will be different in generations to come.
We were scheduled to go on to an Education select committee evidence session after that, but it had already finished so we went to observe the Culture and Sport committee for half an hour, then on to have some lunch in Portcullis House. I didn't have a PA with me, but the BSL interpreters were really good about checking if I needed any help and Caitlin who was also interning in Nigel's office was a huge help with all sorts of little things I couldn't manage.
In the afternoon we went up into the Stranger's Gallery so we could observe Nigel in the Speaker's role during the Opposition Day Debate. The seats to observe are mostly in really steep tiers, but the upper part of the gallery is wheelchair accessible. However, when sat either in a wheelchair or one of the more comfortable seats that fold away neatly into the floor eyelevel is below the window so its really quite tricky to see, when we discussed our afternoon with Nigel and his team later on he said that explained why I kept disappearing out of his eyeline during the debate! I could only hold myself up properly to sit up and see for very short periods of time before needing a rest. The debate was really quite challenging to follow, both in terms of our ability to observe and being able to understand it. Paul and the BSL interpreters found it especially difficult as the subtitle service wasn't working on the screen on their side of the gallery, and of course when it does work it is so far behind what's actually being said that its impossible to follow the order of business that way. I was trying to explain all the different taxes that were being discussed to Caitlin, who was from Tennessee- bedroom tax, mansion tax, 10p tax rate, spare room subsidy - it was all so complicated I can't remember what the debate was meant to be about!
It was an exhausting day for me as sitting is one of the activities I find most painful and tiring - watching a long, complex tax debate through the time I'd usually be napping was very challenging and we got to know one of the Stranger's Gallery staff especially well as he kept joking that he was going to go and get me a blankie so I could lie down! The fun fact about the Commons that I learnt that afternoon also came from Matt who explained to us the bench he was stopping anyone from sitting on was reserved only for police officers, but that police officers must not be wearing their uniform when they sit there. Westminster is a very odd place, full of all sorts of arcane but fascinatingly weird little rituals.
We finished the day with another chat over coffee about what we'd observed and then, exhausted though I was, it was time to go back to the hotel all too soon. I decided as I was in London I had to find my big girl pants and get brave enough to go places on my own...so instead of a cab I scooted back to the hotel on my own - it was so cold on the bridge I was still shaking back in my room under two duvets!
Thursday, March 21, 2013
Polite? Constructive? Request to meet with Minister Mark Hoban 10/2012
Hi Marika,
Thank you for getting back to me so quickly, its much appreciated. As this is such an important issue for sick and disabled people I wonder if it would be possible to arrange a meeting at the Minister's convenience please? I will be able to arrange funding and support from the disabled community to attend.
Best wishes,
Kaliya
Subject: RE: Meeting with Kaliya Franklin
Date: Wed, 24 Oct 2012 19:11:17 +0100
From: DIARY.MINISTER.EMPLOYMENT@DWP.GSI.GOV.UK
To: peekay755@hotmail.com
Marika
Fawcett
Diary Manager to Mark Hoban, Minister for Employment | Private Office, Caxton House, Tothill Street, London SW1H 9NA | Phone 0203 267 5021 | internal 25021 | www.dwp.gov.uk | BOX TIMES: Mon-Thurs 2pm: no box on a Friday. To arrange for clearance of urgent work outside these times, please call the relevant Private Secretary to discuss | Please consider the environment before printing |
This document is strictly confidential and is intended only for use by the addressee.
If you are not the intended recipient, any disclosure, copying, distribution or other
action taken in reliance of the information contained in this e-mail is strictly prohibited.
Any views expressed by the sender of this message are not necessarily those of the Department
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If you have received this transmission in error, please use the reply function to tell us
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Thank you for getting back to me so quickly, its much appreciated. As this is such an important issue for sick and disabled people I wonder if it would be possible to arrange a meeting at the Minister's convenience please? I will be able to arrange funding and support from the disabled community to attend.
Best wishes,
Kaliya
Subject: RE: Meeting with Kaliya Franklin
Date: Wed, 24 Oct 2012 19:11:17 +0100
From: DIARY.MINISTER.EMPLOYMENT@DWP.GSI.GOV.UK
To: peekay755@hotmail.com
Hi Kaliya
Many thanks for your email. Unfortunately the Minister will
not be in London on 14th November as it's the parliamentary recess so is not
able to meet with you and sends his apologies.
Kind regards
Marika
Diary Manager to Mark Hoban, Minister for Employment | Private Office, Caxton House, Tothill Street, London SW1H 9NA | Phone 0203 267 5021 | internal 25021 | www.dwp.gov.uk | BOX TIMES: Mon-Thurs 2pm: no box on a Friday. To arrange for clearance of urgent work outside these times, please call the relevant Private Secretary to discuss | Please consider the environment before printing |
**********************************************************************
From: Kali franklin [mailto:peekay755@hotmail.com]
Sent: 24 October 2012 09:48
To: Diary Minister for Employment
Subject: Meeting with Kaliya FranklinKaliya Franklin
**Address removed**
Dear Sir/Madam,
Thank you for your phone call yesterday, as discussed I'm writing to request a meeting with the Minister for Employment, Mark Hoban to discuss some key issues with the Work Capability Assessment. This would be an additional meeting to the positive and productive meetings at Conservative conference earlier this month with Esther McVey and Iain Duncan Smith, to cover areas within the remit of the Minister for Employment.
The three main points I hope to discuss are in relation to Employment Support Allowance; that of the descriptors, the norms and the further medical evidence processess. In particular the problems specific to each of those areas and what potential solutions can be introduced to improve the accuracy and performance and value for money of the WCA.
I would be ever so grateful if the Minister could please spare me some time to discuss this. As a disabled person who is reliant on benefits it can be very difficult both practically and financially for me to travel to London. However, I will be in London on the afternoon of November 14th funded by a charity to contribute to an event for the APPG on disability and hope it is not terribly cheeky to ask if the Minister could see me that day? Although I am a campaigner I am housetrained, and won't behave badly as am hoping for a constructive discussion not an argument or protest visit...I do have an embarassing tendency to spill tea though!
Yours faithfully,
Kaliya Franklin
This document is strictly confidential and is intended only for use by the addressee.
If you are not the intended recipient, any disclosure, copying, distribution or other
action taken in reliance of the information contained in this e-mail is strictly prohibited.
Any views expressed by the sender of this message are not necessarily those of the Department
for Work and Pensions.
If you have received this transmission in error, please use the reply function to tell us
and then permanently delete what you have received.
This email was scanned for viruses by the Department for Work and Pensions' anti-virus services and on leaving the Department was found to be virus free.
Please note: Incoming and outgoing e-mail messages are routinely monitored for compliance
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What is Work Experience?
Of late, there is much talk of work experience - what makes it experience, how can people do more of it, is it slavery, oh all kinds of questions that for something, back in my day used to be quite simple. A few months before the highly anticipated 'work experience week' which, however dire, had to be better than a week of lessons, you'd fill in a form expressing preferences as to what areas of the work world you might be interested in, then hope for the best and forget about it until closer to the time. I got lucky once and had a fantastic placement, and on another occasion remember sitting in a post room for a week not being allowed to actually do anything. Them's the breaks, even then back when it didn't require either an independent income or DWP imposed sanctions to be able to carry out work experience.
So, when the idea was suggested that I might like to do work experience in the Deputy Speaker's Office I was quite excited and hopeful of more than just a post room holiday. It took everyone involved a few months to set up, in between available dates, illness and wondering just how to fund the whole thing, but eventually we settled on early March, hoping the weather and therefore my symptoms would be a bit better. The weather lived up to traditional British expectations and was f r e e z i n g, but apart from that the week was fantastic, exhausting and exciting.
Being based in the north west I couldn't take up the opportunity of an internship without being able to fund accomodation - which meant for a few days work experience I needed to raise well over £500 to cope with London prices. Fortunately I was able to find a charity to help, so I only needed to cover the costs of transport and food - having several months lead in time meant I could save up for the ticket and food wasn't too terribly expensive as lunch was provided for us each day. Without the charity support I wouldn't have been able to do any of this, and despite asking around charities and work programme providers about funding to do work experience no-one could think of any, so this fantastic opportunity simply isn't open to sick or disabled people who live outside easy commuting distance of Westminster, unless they have independent wealth.
The experience, or mini internship as it was properly titled, was organised for us by DWP Ministers, and a timetable was set out from 10 am until 4pm each day as one of the participants might have fretted a bit about where nap times fitted in to the whole thing. As it turned out, unsurprisingly, naptimes did not fit with the programme, but 10 - 4 was just about sort of manageable, although there were consequences as a result. And I do apologise to the hard working House of Commons cleaner's for the various sticky patches of oramorph residue I left about the place...and the multiple doorways that didn't move when I asked them nicely to. Oh, and the really expensive automatic door that erm, needed fixing after I tried to open it. However, having learnt my lesson about liquids and Westminster, I oh so carefully refused to actually drink anything in the receptions they went to as I've noticed it stresses the domesitc staff out quite a bit when said liquids get flung everywhere. There was a definite, don't worry about dropping stuff, attitude from the political staff though.
Our first morning was so cold, so, so cold that I was visibly vibrating when I arrived at security to be greeted by a broken wheelchair doorway. I suspect the looking like I was going to fall off my scooter helped them rush me in, but the automatic doors refused to co-operate and one nice security man had to fight his way into the bit I was stuck in and wrench the doors apart. On a side note, it is potentially concerning when the security guards remember you between visits that are some months apart. However, this set the tone for the whole 3 days, I'd arrive, we'd all celebrate the wheelchair doorway being fixed, scratch our heads then wait for the nice man to come along and use brute force to open them.
Access at Westminster is an interesting business - generally speaking I think it is quite good, using a base line level of 'is there any access, and can you get to where you want?' however it does involve lots of longer routes, going outside, having to observe from separate areas, and much more time allowed to get anywhere. The teeny tiny lifts won't all fit even a small wheelchair or scooter, and it was sad to see the empty stools in them where just a few weeks ago men had full time paid employment. We only got lost a few times, and one particular 'where are we' moment came with a flurry of black tie'd waiters who let us pinch canapes off their plates.
I noticed that not many people in Westminster notice the real people who work there - the cleaners, the security guards, the waiting staff, everyone who is actually important in terms of keeping the place going is invisible to those who think they are important in keeping the place going. I was really saddened to learn that senior management staff are getting a pay rise of between 4-5% but the important, front line staff are getting the same 1% as other public sector workers, with a side order of re-negotiated contracts to reduce their employment and pension rights. No wonder they are planning to strike. It was also depressing, but unsurprising to learn that the chief clerk of the House of Commons is given a grace and favour mansion as part of his job, not like for example the Speaker's residence which is used frequently to host events, the clerk can do that if they wish, but doesn't really. However, to compensate the clerk for the sheer inconvenience of having to live in a grace and favour mansion worth millions, he is given 7% of the value of the grace and favour property in addition to his salary. This is all information in the public domain but as the chief clerk isn't a political position the media don't seem to care. I bet all the cold, homeless people would care if they knew though, the hard working Common's staff watching their management give themselves payrises certainly cared!
From the perspective of disability and access, I think its safe to say the Deputy Speaker and his team learnt more than their interns. We were looked after by the very lovely Alex, who like most young, ambitious Westminster staffers hadn't much in the way of prior disability experience, so, sensibly he'd phoned up the Diversity Office to ask for some advice before we arrived. They, not terribly helpfully managed to drum into him that he must not, under any circumstances EVER ask 'what was wrong' but merely ask 'what was needed'. Its the kind of social model advice that seems a great idea until reality crashes in and irritatingly reminds people that generally just a little bit more information than that is required. This meant I didn't realise until we were leaving on the final day that Alex hadn't a clue what was going on when I went a funny colour, muttered about needing morphine or went off to the loo to relocate another joint hoping the screaming was muffled by the thick Westminster walls.
The other intern was a young man with profound deafness, so we made quite the group as we went about - Paul needed two full time British Sign Language interpreters with him at all times, sometimes there were three, then there was me on the scooter and poor Alex trying not to lose or break any of us. This mostly succeeded until the final afternoon when for some reason the scooter tipped, I put a foot out to stop it falling, insisted I was fine, then two minutes later said that actually immediate access to a toilet and some morphine would be helpful. Now. Please.
The most important messages I got from this work experience were;
I'd like to go back and stay there forever. My body however was not so enthusiastic about this ambition and demanded copious amounts of opiates and three days before I could get out of bed and speak without slurring.
Westminster is a bubble. We all know that, but from the inside the bubble of priviledge is far more insulating than the outside could ever imagine. It's really no wonder that they are all utterly disconnected from reality, regardless of which party they belong to.
Its not just the work programmes the DWP have 'forgotten' to inform about minor details such as Access to Work. They haven't told other departments about it either, so no-one had any idea when setting this up where they could ask for advice, any access requirements or fund them.
In that bubble, if people insist they want things to happen, they happen. Its like magic to the important people...all those underpaid Common's house elves just wave a wand when the important's aren't there and Dobby style, their will be done. Its really no wonder that we have a political class who are utterly ignorant of the real world when they get a lesson in 'thy will be done Westminster style' without the reminder that the rest of the country simply doesn't work that way.
Politicians are really, really keen to get more disabled people to become MP's. Really keen. So much so they don't actually listen to what disabled people are saying the barriers actually are.
The key take home message I left with was that if I want to be an MP there are no barriers, there will be no glass ceiling, and whatever is needed in access terms would be done. It was actually really powerful to hear that message from the Deputy Speaker, and I won't forget what he said. But sadly, I think there's a long way to go before those same politicians understand that for many of us, all the access or equipment in the world cannot overcome the barriers our bodies present to working in terms of sickness, pain and fatigue. However, the more of us who spend time with politicians, the more likely they are to understand this.
My favourite fact about the House of Commons turned out to be toilet related...which won't shock any long time blog readers, but is also a weird little access feature, historical style. If you've ever wondered while watching PMQ's why the Speaker's chair has a roof on it, its because once upon a time it was also a toilet. The Speaker wasn't allowed to leave the House while it was sitting, so before there were Deputy Speaker's there was a curtain around the chair which the Speaker would pull shut, do his business, then open back up and carry on. Bringing that back would really liven up PMQ's!
So, when the idea was suggested that I might like to do work experience in the Deputy Speaker's Office I was quite excited and hopeful of more than just a post room holiday. It took everyone involved a few months to set up, in between available dates, illness and wondering just how to fund the whole thing, but eventually we settled on early March, hoping the weather and therefore my symptoms would be a bit better. The weather lived up to traditional British expectations and was f r e e z i n g, but apart from that the week was fantastic, exhausting and exciting.
Being based in the north west I couldn't take up the opportunity of an internship without being able to fund accomodation - which meant for a few days work experience I needed to raise well over £500 to cope with London prices. Fortunately I was able to find a charity to help, so I only needed to cover the costs of transport and food - having several months lead in time meant I could save up for the ticket and food wasn't too terribly expensive as lunch was provided for us each day. Without the charity support I wouldn't have been able to do any of this, and despite asking around charities and work programme providers about funding to do work experience no-one could think of any, so this fantastic opportunity simply isn't open to sick or disabled people who live outside easy commuting distance of Westminster, unless they have independent wealth.
The experience, or mini internship as it was properly titled, was organised for us by DWP Ministers, and a timetable was set out from 10 am until 4pm each day as one of the participants might have fretted a bit about where nap times fitted in to the whole thing. As it turned out, unsurprisingly, naptimes did not fit with the programme, but 10 - 4 was just about sort of manageable, although there were consequences as a result. And I do apologise to the hard working House of Commons cleaner's for the various sticky patches of oramorph residue I left about the place...and the multiple doorways that didn't move when I asked them nicely to. Oh, and the really expensive automatic door that erm, needed fixing after I tried to open it. However, having learnt my lesson about liquids and Westminster, I oh so carefully refused to actually drink anything in the receptions they went to as I've noticed it stresses the domesitc staff out quite a bit when said liquids get flung everywhere. There was a definite, don't worry about dropping stuff, attitude from the political staff though.
Our first morning was so cold, so, so cold that I was visibly vibrating when I arrived at security to be greeted by a broken wheelchair doorway. I suspect the looking like I was going to fall off my scooter helped them rush me in, but the automatic doors refused to co-operate and one nice security man had to fight his way into the bit I was stuck in and wrench the doors apart. On a side note, it is potentially concerning when the security guards remember you between visits that are some months apart. However, this set the tone for the whole 3 days, I'd arrive, we'd all celebrate the wheelchair doorway being fixed, scratch our heads then wait for the nice man to come along and use brute force to open them.
Access at Westminster is an interesting business - generally speaking I think it is quite good, using a base line level of 'is there any access, and can you get to where you want?' however it does involve lots of longer routes, going outside, having to observe from separate areas, and much more time allowed to get anywhere. The teeny tiny lifts won't all fit even a small wheelchair or scooter, and it was sad to see the empty stools in them where just a few weeks ago men had full time paid employment. We only got lost a few times, and one particular 'where are we' moment came with a flurry of black tie'd waiters who let us pinch canapes off their plates.
I noticed that not many people in Westminster notice the real people who work there - the cleaners, the security guards, the waiting staff, everyone who is actually important in terms of keeping the place going is invisible to those who think they are important in keeping the place going. I was really saddened to learn that senior management staff are getting a pay rise of between 4-5% but the important, front line staff are getting the same 1% as other public sector workers, with a side order of re-negotiated contracts to reduce their employment and pension rights. No wonder they are planning to strike. It was also depressing, but unsurprising to learn that the chief clerk of the House of Commons is given a grace and favour mansion as part of his job, not like for example the Speaker's residence which is used frequently to host events, the clerk can do that if they wish, but doesn't really. However, to compensate the clerk for the sheer inconvenience of having to live in a grace and favour mansion worth millions, he is given 7% of the value of the grace and favour property in addition to his salary. This is all information in the public domain but as the chief clerk isn't a political position the media don't seem to care. I bet all the cold, homeless people would care if they knew though, the hard working Common's staff watching their management give themselves payrises certainly cared!
From the perspective of disability and access, I think its safe to say the Deputy Speaker and his team learnt more than their interns. We were looked after by the very lovely Alex, who like most young, ambitious Westminster staffers hadn't much in the way of prior disability experience, so, sensibly he'd phoned up the Diversity Office to ask for some advice before we arrived. They, not terribly helpfully managed to drum into him that he must not, under any circumstances EVER ask 'what was wrong' but merely ask 'what was needed'. Its the kind of social model advice that seems a great idea until reality crashes in and irritatingly reminds people that generally just a little bit more information than that is required. This meant I didn't realise until we were leaving on the final day that Alex hadn't a clue what was going on when I went a funny colour, muttered about needing morphine or went off to the loo to relocate another joint hoping the screaming was muffled by the thick Westminster walls.
The other intern was a young man with profound deafness, so we made quite the group as we went about - Paul needed two full time British Sign Language interpreters with him at all times, sometimes there were three, then there was me on the scooter and poor Alex trying not to lose or break any of us. This mostly succeeded until the final afternoon when for some reason the scooter tipped, I put a foot out to stop it falling, insisted I was fine, then two minutes later said that actually immediate access to a toilet and some morphine would be helpful. Now. Please.
The most important messages I got from this work experience were;
I'd like to go back and stay there forever. My body however was not so enthusiastic about this ambition and demanded copious amounts of opiates and three days before I could get out of bed and speak without slurring.
Westminster is a bubble. We all know that, but from the inside the bubble of priviledge is far more insulating than the outside could ever imagine. It's really no wonder that they are all utterly disconnected from reality, regardless of which party they belong to.
Its not just the work programmes the DWP have 'forgotten' to inform about minor details such as Access to Work. They haven't told other departments about it either, so no-one had any idea when setting this up where they could ask for advice, any access requirements or fund them.
In that bubble, if people insist they want things to happen, they happen. Its like magic to the important people...all those underpaid Common's house elves just wave a wand when the important's aren't there and Dobby style, their will be done. Its really no wonder that we have a political class who are utterly ignorant of the real world when they get a lesson in 'thy will be done Westminster style' without the reminder that the rest of the country simply doesn't work that way.
Politicians are really, really keen to get more disabled people to become MP's. Really keen. So much so they don't actually listen to what disabled people are saying the barriers actually are.
The key take home message I left with was that if I want to be an MP there are no barriers, there will be no glass ceiling, and whatever is needed in access terms would be done. It was actually really powerful to hear that message from the Deputy Speaker, and I won't forget what he said. But sadly, I think there's a long way to go before those same politicians understand that for many of us, all the access or equipment in the world cannot overcome the barriers our bodies present to working in terms of sickness, pain and fatigue. However, the more of us who spend time with politicians, the more likely they are to understand this.
My favourite fact about the House of Commons turned out to be toilet related...which won't shock any long time blog readers, but is also a weird little access feature, historical style. If you've ever wondered while watching PMQ's why the Speaker's chair has a roof on it, its because once upon a time it was also a toilet. The Speaker wasn't allowed to leave the House while it was sitting, so before there were Deputy Speaker's there was a curtain around the chair which the Speaker would pull shut, do his business, then open back up and carry on. Bringing that back would really liven up PMQ's!
Tuesday, February 19, 2013
John Pring's Disability News Round Up - 15/02/2013
- A disabled woman awaiting a second kidney transplant was “harassed” by her local jobcentre during an emergency blood transfusion, because they wanted to know when she would be well enough to attend a back-to-work interview.
- The government looks set to force tens of thousands more working-age disabled people to pay towards their long-term care and support than was recommended by an independent commission.
- A major new government report has painted the “most comprehensive overview” since 2005 of the disadvantage and barriers faced by disabled people in the UK.
- An insurance company set to make huge financial gains from incapacity benefit (IB) reform bragged about “driving” the government towards those reforms, evidence obtained by Disability News Service (DNS) has revealed.
- A minister has been accused of hypocrisy after pledging to break down the barriers to disabled people’s access to public transport, only days after confirming lengthy delays to new European bus and coach access rules.
- One of the Metropolitan police’s own disabled advisers has warned that cases of discrimination and human rights abuse by the force’s own officers could become more common because of government funding cuts.
- Two nurses who resigned from the government’s “fitness for work” contractor Atos Healthcare because it was “cut-throat” and “ruthless” have described how they were criticised by their managers for being “too nice”.
- A disabled peer has attacked a “mean-spirited”, “miserable” and “dishonest” government bill that will see disabled people in 3.4 million households across Britain facing further cuts to their income.
- Britain’s Paralympians have welcomed the news that Channel 4 has secured the UK television broadcast rights to both the Rio 2016 Paralympics and the Sochi 2014 Paralympic Winter Games.
- Transport staff who fail in their duty to provide an accessible service for their disabled passengers should face disciplinary action, a former Disability Rights Commission director has told a parliamentary meeting.
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