That Kind of Assistance is Not
Required
© Gill Gerhardi
2003
OK so
life stinks. You are drowning in the depths of misery.
Something has happened to make the future disintegrate. Or the
final straw in a stamina sucking chain of progression has tipped
the balance. Logic dictates that it isn’t worth carrying
on and at some point you accept it. Taking that decision
is something of a comfort. At least you now know where your going
and what you have got to do. You are no longer in an eternal
loop wallowing in the Slough of Despond. But do you really
feel any better, the heck you do. Even though logic has dictated
that this is the right way to go, in your heart of hearts you
know this solution is final and a big part of you is already
in mourning.
This
is a recognisable situation for most of us. We have all been
driven near to that point at some time in our lives. The loss
of a loved one, either because they have taken their love away
or because they have died, is sometimes enough. The loss
of financial security so that you are no longer able to provide
for yourself and your loved ones in the way you want to would
make a great many people move very close to the edge. Finding
yourself engulfed by an all pervading fear of something that
is imminent and that you can’t escape from, could be enough
too. A situation where you have been permanently stripped
of your personal freedom might also be enough to lead some of
us to question whether that was the end of desirable life.
Luckily
most of us don’t carry the actions through to the bitter
end. If we did the population would be discernibly smaller.
How does society
normally deal with suicide? If we do get to the point where we
are ready to carry it through and we get found out, or ask for
help, there are fairly well trodden pathways for everyone to
follow. They might prescribe antidepressants for you.
They might section you under the mental health act and you might
get a course of counselling. At no time would you be given
pills and a booklet called “How to Kill Yourself Without
Making a Mess,” and kissed goodbye.
Why
don’t we help people end their lives early? Because
we believe life, anyone’s life, is special even sacred?
Because we want everyone to value life and once we let it lose
that absolute value civilised society could disintegrate?
Because we know that there are family and friends who love them
dearly and whose lives would be depleted without them?
Because we believe that whatever problems have caused the wish
to end it all are surmountable and once overcome their life will
return to an even keel? Or is it because we believe that everyone
has the potential to make the world a better place? Or
perhaps we think that all the time and money invested in the
person’s upbringing, education, health and training would
be wasted? We’ll leave you to pick the answer you
prefer.
So what
changes when the person wanting to die is severely disabled?
Is it just that society doesn’t want to prolong their suffering?
Is it that we don’t know how to make it bearable, or how
to help them adjust. Is it that we don’t believe they
can contribute anything, that their thoughts, feelings and experiences
– once they have got through the suicidal stage – are
worth nothing. Is it because becoming severely disabled
is the average able bodied person’s worst nightmare. Or
is it that we believe that disabled people really are second
class citizens and are not worth the space they occupy on the
planet?
Sure
being severely disabled isn’t a picnic and if you are unlucky
enough to acquire a condition where the prognosis is both progressive
and terminal then it may take a lot of coping with both for the
person themselves and those around them. But do we do anything
to help able bodied people understand that there is life after
disability? Do we publicise what there is available so
that people know there is an adequate safety net before they
need it? Do we highlight people who are coping as normal
human beings? No. Even though there are a lot more of us
out there, those of us that are coping well are still often portrayed
as superheroes. This is probably because the able
bodied population do not have the imagination to see themselves
doing half as well
So when
someone is diagnosed with a disability what are they faced with?
The only answer is a gaping black hole of shock, uncertainty
and fear. If it is a progressive disability the only thing
you do know is that things are going to get worse. But
progressive or not the future you thought was there has gone,
your personal freedom is going to go, when you can no longer
do what you want to do when you want to do it, if it hasn’t
gone already. Your earning power could go down very quickly leaving
your financial security at best uncertain. And what about
your loved ones, are they still going to love you? Are
you the same person they loved before? Are you going to
become a burden to them? Are they going to be martyred
to your cause?
So being
diagnosed with a severe or going to get severe disability means
you are actually being hit by at least three things simultaneously
that we identified above as individual factors that might drive
some to thoughts of suicide. So it’s not surprising
that that is on the agenda. Add to that the feelings of
helplessness, sympathy and indeed pity of those around the disabled
person, who ultimately won’t be able to disagree with the
logic of suicide, after all everything that is happening in front
of them is just terrible and suicide could almost become inevitable.
So what
is going wrong here? Since when, outside of nazi
Germany, has disability been synonymous with a death sentence?
What is there available to help you live as full a life as possible
after disability has struck? There is actually a great
deal of help from the state in England although piecemeal and
dependent on where you live. That help is dependent on
how bad you are or how bad it is perceived you are going to get
and how much money you have. It is also influenced by how you
get on with the professionals that are there supposedly to get
you what you need but who work in a system organised to do the
opposite. Primarily it is also dependent on you knowing
what to ask for, how to ask for it and having the time and stamina
to push for what you need through the jungle of red tape and
prevarication that officialdom puts in the way. But if
you can pass all those tests you can get a lot of help.
You can get grants for equipment and support to help you keep
working. Grants of up to twenty three thousand to adapt
your home. Equipment worth more than ten thousand pounds
to help with mobility and lifting is available. Seven hundred
pounds a week at least is available from several different sources
working together to provide personal and nursing care in your
own home. And this isn’t an exhaustive list.
The
only thing you can’t keep is financial security. You
can only get much of the help listed above if you have less than
eight thousand pounds to your name. And once you are unable to
work you are expected to live on a subsistence level. Most
of any extra things like holidays have to come from charity.
The
real question that is yet unanswered, is what do you do with
the life that you do have? You should have been given the
means to meet most of you physical needs but what about your
mental ones? Can you contribute to the people around you
in a meaningful way? What are you supposed to do with the
time left when you are not being dressed/undressed, fed or toiletted?
Yes there are day centres but they generally have to cover all
interests, abilities and aptitudes so rarely contribute to a
very meaningful existence.
What
is a disabled person's life worth? We know that severely disabled
people are able to do great things. The media highlights the
greater ones regularly. Classic books have been written when
the authors only have control over a left foot or a blinking
eyelid.* Artists using their toes or mouth
to hold the paintbrush complete paintings of quality.**
Lots of disabled people have found ways of raising large amounts
of money for charity.*** Many others have
found ways of using their knowledge and experiences to help themselves
and others by lobbying for change or by setting up organisations
to help people in similar situations. Yet there is no direct
way to find out what you can and want to do with the life you
have left and no money that we know of, that is targeted at helping
you to do it even when you do know.
So please don't consider death to be kinder
than life as a severely disabled person. Every individual in
the world is worth exactly the same as you are. Lets just devote
more time and energy to assisting people to live, helping to
find the keys to free the unique individual inside and giving
him or her a meaningful existence, rather than encouraging an
early end.
*"My Left Foot" by Christy Brown, "The
Diving Bell and the Butterfly" by Jean-Dominique Bauby
** Association
of Foot and Mouth Painters Worldwide
*** 'A shining example for all...' - Oceanside senior
celebrates 50 years of service to charity
Proving that it's all in the mind
A life worth living
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