Voices of the vulnerable in society must be heeded

Suicide and determining whether people have a right to assistance in bringing suffering to an end are issues which should be …

Suicide and determining whether people have a right to assistance in bringing suffering to an end are issues which should be debated honestly and openly, writes Donal Toolan

These are not easy times to be disabled in Ireland. The disclosure that a disabled Irishman travelled to Switzerland last year for an assisted suicide and the manner of the reporting of this provide a chilling reminder of how disabilities are interpreted and understood.

This story came on top of the decision of the courts in the United States to end the life of Terri Schiavo in accordance with her husband's interpretation that she would not wish to remain alive in such a state.

Is deprivation of food really to be regarded as a humane response to an individual's life?

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Suicide and determining whether people have a right to assistance are matters which we must debate honestly and they are issues which have relevance to society as a whole, not just to disabled people.

What was striking for me, as a disabled person observing the reporting of this particular story, was the invisibility of disabled people's voices - people who might have some perspective to contribute, particularly since such fundamental aspects of life are being considered.

Lawyers, politicians, religious and others have rightly considered the legal and ethical questions presented by a disabled man choosing an assisted suicide, but this analysis provided scant understanding of the social reality which disabled people live in.

The story presented last week is not unique, although it should serve to encourage us to ask some critical questions about why some disabled people feel that they have no option but to take their own life.

The number of disabled people who attempt or commit suicide is, like many areas of our lives, shrouded in some ambiguity.

What makes a disabled person's life feel so unbearable that suicide becomes more than a passing thought? Is suicide an inevitable possibility which some disabled or older people are more likely to consider, especially in a culture where terms such as "bed-blockers" are thrown about freely, adding to an increasing impression that those who require support to participate in Irish life are a burden to a fast-moving economy?

However unpalatable suicide might appear to our sensibilities, looking the other way with a strong sense of morality or legality will not obscure the fact that the lack of choices afforded to disabled people serves only to underline the absence of a strong sense of wellbeing.

What kind of supports are available to disabled people when they are feeling vulnerable about the restrictions placed on their participation in life? At best, the situation is patchy; and, as with so many services, it depends where you live.

Recommendations on critical issues such as advocacy and peer-support services, which might address some of the emotional support needs of people, have not been delivered, particularly to vulnerable individuals confined to institutions. Counselling services are frequently located in inaccessible buildings.

Significant aspects of mental health services still require legislation and many people with mental health issues are still availing of Victorian services, while reports of the Inspectorate on Mental Health are becoming a yearly ritual of indifference.

It is somewhat ironic that this story of one man's journey has focused on the ethics and legality of the assistance provided.

Thousands of disabled Irish people do not enjoy any legal recognition of any form of assistance to carry out the most basic of choices, such as eating or getting out of bed, if that is what they need assistance with.

In spite of the efforts over a decade or more of groups such as Independent Living Movement to obtain such rights, these supports, which enable people to exercise the most basic of choices, have to be fought for and protected year in, year out.

Choices available as of right elsewhere in Europe exist in Ireland only as a matter of discretion for a few, while others are destined to live out their lives in institutional settings.

The Government is about to enact disability legislation which ignores the recommendations of the Human Rights Commission, the Equality Authority and the Disability Legislation Consultation Group, which was established by the Government to advise on this matter.

This legislation will lock people into a life of further bureaucracy, without any realistic expectation that their rights will be recognised and at the same time increasing the likelihood of more institutional responses without any accountability being shown to disabled people.

Minimum standards for services, promised more than six years ago with the establishment of the National Disability Authority, have for some reason been taken off the agenda of that agency, without any valid explanation being offered to the thousands of people who are waiting for standards which might go some way to ensuring that they could enjoy a level of choice in their basic living conditions.

These are just some of the realities which contribute to and reflect the undervaluing of disabled people's lives.

If politicians and others in society are going to feel uncomfortable about disabled people and those who choose suicide, then we might usefully expend more than rhetoric in ensuring that people can access a range of choices which truly value dignity and are not dependent on charity.

We need to go beyond the legal and ethical dimensions of suicide and consider the very nature of the society we are shaping.

By placing increased value on material worth, where the opportunity to participate is restricted to those who are young, enjoy "perfect" health, have access to financial resources and possess a certain body type, it is inevitable that some people will be excluded.

How we address that exclusion and how we support the right of disabled people to participate in society has consequences which are not reflected in the undelivered recommendations of reports and legislation.

If we are uncomfortable with those consequences, then perhaps a little less moralising and some effective recognition of disabled people's right to dignity might deliver more desirable choices and outcomes for society as a whole.