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.
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
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.
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.
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
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"
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.
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.
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.
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.
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.