Deafblindness and the loss of autonomy
Ethical and care reflections concerning a recent case of euthanasia
The international press has been shaken by the recent news regarding a case of euthanasia applied to two brothers in Belgium. According to information available, the Verbessem twins, deaf since birth, were diagnosed with a degenerative ocular disease that would deprive them of their sight and would make them become Deafblind.
Since this is our area of expertise, EDbN cannot abstain itself from making a pertinent reflection that under no circumstances questions the decision of two adults of sound mind whose end fits into the terms established by the legislation of their country.
This reflection hopes to show the fact that the conclusions that could be deduced from this issue can be inappropriately extended to the remainder of Deafblind cases. We believe that to highlight the irreversible vision loss in people with hearing limitations as a trigger is irresponsible if all other factors involved are not presented also. Some publications indicate the presence of other physical ailments that have not been included in most other pieces of news, which contribute a wider context to such an important decision. For this reason, we will not accept any generalisations extended to the rest of the Deafblind community. It is also unacceptable to present the Verbessen brothers’ decision as a standard practice to be expected for people who might find themselves in a similar situation.
Deafblindness gathers the widest range of cases that give rise to different levels of disability and dependence. A case of congenital Deafblindness is not comparable to a case of acquired Deafblindness, in the same way as it is not comparable if it is accompanied or not by an intellectual disability or physical limitations. The irreversible loss of personal autonomy is a particularly difficult process that requires not only medical support, but, specially, psychological and lifetime care support.
A person with Deafblindness needs the support of a Deafblindness intervener, as well as that of other professionals. The objective is to work on their communication skills so that they can develop the most autonomy possible within their level of disability. They also need day centres and specialized residences that can attend to their needs in accompaniment or in absence of family support. This process must be included within an adequate social structure, as with any other case of severe disability. It is this mechanism, correctly geared, that should guarantee that nobody in a situation like the one presented should feel helpless and neglected.
In EU, many organisations make enormous efforts to provide resources for a community that is far from receiving adequate services. This group, largely condemned to being dependent on others, cannot be ignored and, in the best of cases, shut away in general centres. Spain, as an exemple, has only one centre specialized in Deafblindness at its’ disposal; a centre which is capable of attending to less than 40 spaces, for an estimate of 18000 people who possibly need it. In EU, Deafblind population could reach more than 200.000 people.
The Administration, in some EU countries, is far from guaranteeing the support structures that our group needs. With countless difficulties, our mission is to keep the cause alive, and we aspire to the best opportunities for those who cannot make do by themselves. A person with Deafblindness, duly attended, can reach reasonable levels of autonomy and develop a complete, satisfying and dignified life. EDbN and all its NGOs work to obtain the necessary support in the processes of learning, adaptation and improvement that anyone with Deafblindness might need. Nobody should lack this support, and even less in the difficult situation of loss of autonomy.
Do not hesitate to contact us if you are a person with Deafblindness or if you know someone in this situation.