e-mail gill@willtolive.co.uk

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