TEMPERAMENTVM ISSN 1699-6011

TEMPERAMENTVM ISSN 169-6011

		EDITORIAL
		Coffee for all, death for some Javier Romañach Cabrero¹ Miembro del Foro de Vida Independiente Mail delivery: C/Raimundo Fernández Villaverde 53, 9d, 28003 Madrid (España) Manuscript accepted by 6.06.2007 Temperamentvm 2007; 6

How to cite this document
Romañach Cabrero, Javier. Coffee for all, death for some. Temperamentvm 2007, 6. In <http://www.index-f.com/temperamentum/tn6/t1607e.php> Consulted

"I have entered a phase which I considered to be terminal because, as well as suffering from an irreversible form of pentaplegy, I am also suffering from chronic infections due to my lower tolerance to antibiotics, which is causing me terrible psychic and physical suffering. And all this is happening in an impossible caring context. In view of the more than likely possibility of ending up in a hospital abandoned to a miserable death, I would like to send away the following message hoping that I will get lucky."

This is the beginning of Jorge León's message published in a blog (http://destiladospentaplejicos.blogspot.com/) on 21^st March 2006. He was subsequently found dead in his own house in May 2006. He had achieved his goal, which was to die.

Three main reasons to be willing to die were declared in his blog: his health, his caring context and his refusal to be admitted into a hospital/nursing home. While the first reason emerges from a medical context, the last two reasons belong to a social one.

In Spain, there is a small group of individuals who, like Jorge León, live in a situation of "inDependence" because of their refusal to move to a hospital/nursing home. Many of them have a quadriplegia and need more than 10 hours per day of continuous personal assistance. This is their only way of living in their own area, and so, of avoiding moving into a nursing home. Usually, it is their families that cover the lack of assistance mentioned by Jorge León in his blog.

The figure of Personal Assistant is meant to provide support to individuals who have a functional diversity^2.This support, until only very recently and despite its being well known in the United States and about ten European countries over twenty years ago, had not been included in the Spanish social services.

The concept of Personal Assistant can be defined as an individual that helps another individual to carry on with his own life. In other words, a Personal Assistant carries out, or helps another person carry out, day-to-day tasks which, for whatever reason, he or she cannot accomplish on his or her own.

This type of relationship is regulated by a professional contract through which the client, usually an individual with a functional diverse or his or her legal representative, becomes the hiring part. The very existence of Personal Assistant is based on the personal wish and right of functionally disabled individuals to control their own lives, as well as enjoy a position of equal opportunities within their own social environment.

The number of individuals with limited physical autonomy keeps growing day by day. However, this does not necessarily mean that they must give up their right and ability to decide how they want to live their life. For example, a person with quadriplegia who, therefore, cannot control neither his arms nor his legs, would need help for washing, getting dressed, eating, drinking, writing, driving, moving, travelling, etc. However, despite not being able to autonomously develop each and every one of these tasks, he still conserves his right and ability to take decisions and, subsequently, choose what he wants to do, when he wants to do it, and with whom he wants to do it.

In fact, this person is perfectly capable of going to work, study, travel, go to the cinema, go shopping, take his children to school, etc. Even though, in order to do all this, he will need help and support from someone else, that is, a Personal Assistant.

As this individual's Personal Assistant, he or she will help and support him when requested to do so by his functionally disabled client, becoming his arms, his eyes, his ears, etc. Interestingly, in doing so, this worker will become one of the best "human resources" for a disabled individual to emerge from a situation of permanent discrimination.

The promulgation of the Law of Promotion of Human Autonomy and Assistance to people in a dependent situation became a ray of hope for all those who find themselves in need of personal assistance several times throughout the day. Finally, families would have a chance to release themselves from this undesirable situation and hospitals and nursing homes would stop being the only solution available. Finally, one of the most severely discriminated social groups was going to have access to different resources which, in time, would have granted them the same opportunities as the rest of the society.

Unfortunately, the harsh reality seems to indicate that social policies are only designed to earn votes and not to bravely confront the situation of discrimination that some groups are still suffering. Coffee for everyone. Therefore, in order to remind us that not all of us are rightful citizens but rather bargaining chip for the social and political marketing, the Ministry of Labour and Social Affairs announced its new proposal: a new system where the already insufficient maximum benefits were to be reduced, and the benefits for those who chose to live in their own areas were to be insignificantly increased.

Subsequently, according to this new Law and all its socially orientated proposals, someone who, like Jorge León, chose to live in his own area spending about 4.000 euros per month, of which a maximum of 1.150 euros were obtained from benefits, would see this amount reduced by half approximately. In other words, once this new system is implemented, this person will see how his maximum allowance get reduced to 780 euros per month, that is, 25% less. An all this without taking into account the "innovative" copayment proposed by the Government, which would probably reduce this cipher by half.

We are actually getting further and further away from Europe, since Spain's maximum benefits would become a third of Germany's. It is just getting worse despite the good propaganda.

Of course, this problem would not exist is Jorge León or someone in his situation did what is supposed to be best for him or her: give up his happiness and get admitted into a hospital/nursing home. The system would definitely support this move because the costs would not be relevant.

Very few cases do require such a high degree of assistance. Therefore, their financial impact on the system would be negligible. As a result, it is not the cost which really matters when it comes to find solutions to this and similar problems with minor economic impact.

What really matters is the respect for everybody's Human Rights, dignity of life and the necessary resources to support their decision to live in their own environment, providing individual solutions that are adaptable to their individual reality. Perhaps there would be fewer people included in the system, but they would live in better conditions.

Clearly, this would result in fewer voters -I forgot that what really matters is coffee for everyone-, although for some of us it might mean death.

Yet, these deaths will not have been in vain. They will keep an empty bioethical debate about the good death, ignoring the fact that our society did not, does not, and does not seem to ever want Spain to provide a life in dignity to those who refuse to obey what the system is dictating: the hospital/nursing home or one's family.

It is as useless as it is dreadful that some of us have to die for this reason, and that these deaths are not used to promote a life in dignity for those who are just different. Perhaps we will be less inconvenient in the afterlife.

¹ Expert in bioethics, particularly in the area of functional diversity. Tetraplegic at level C5-C6, the author needs permanent support between 10 and 14 hours per day.
² "Functional diversity" is a term created by the Forum for Independent Life which designates what it is usually known as "disability". This term intends to eradicate the negative connotations that normally appear when defining this group, as well as promote their concept of diversity.

FUNDACION INDEX Apartado de correos nº 734 18080 Granada, España - Tel/fax: +34-958-293304