Ms Karen Hall:

I thank the committee for inviting us. I have an awful cough so if I start coughing and sputtering, please excuse me.

We know that the matter under discussion is a highly sensitive topic. We understand that the committee is looking at what is happening in other jurisdictions in relation to the right to die with dignity. I will tell the committee a little about Disability Action for those who are not familiar with it. Disability Action is an organisation which has been working with people with disabilities in Northern Ireland for over 30 years. We are a human rights based organisation and our work is underpinned by our own charter of rights and the UN Convention on the Rights of Persons with Disabilities. We are a campaigning organisation and we work to bring about change and influence policy to ensure that disabled people are not disadvantaged in society and can make valuable and valued contributions. I am not a medical expert, a lawyer or an academic. I worked with disabled people and our members to produce a position paper on the issue. It only relates to Northern Ireland and we have not consulted or engaged with disabled people outside the jurisdiction on the issue.

There has been significant debate in the UK on the issue of assisted dying. I will use the terminology of "assisting dying" since that is what we used in our paper. In 2010, we produced a paper which set out our position on it. In the years running up to this, the subject of assisted dying and the right to die had been debated significantly in the media. Legislation had been proposed and individuals had sought clarification on the workings of the current law through appeals to the House of Lords. A consultation was undertaken by the Public Prosecution Service for new guidance for prosecutors under the current law. There were key issues that we felt needed to be considered and debated with disabled people and their organisations to take a position on it. I will go through some of the process and I am happy to take questions.

Lord Joffe attempted to bring legislation through the House of Lords in 2004, specifically regarding assisted dying for people who were terminally ill. That was the language used in the Bill. A particular concern was the definition of terminal illness in it, including terms such as "is inevitably progressive" and "cannot be reversed through treatment". Disabled people strongly felt that could be them even though they did not deem themselves to be terminally ill and that it was based on the medical model and not the social model of disability. That Bill was defeated in the House of Lords in 2006. There was a free vote in the House of Lords in 2009 on an amendment to the Coroners and Justice Bill which was defeated. The amendment would have removed the threat of prosecution from those who go abroad to help an assisted suicide. The House of Lords judgment in Purdy v.Director of Public Prosecutions led to the Director of Public Prosecutions in Northern Ireland preparing an interim policy that went out for consultation. We responded to that and there were key concerns about proposed changes.

I will address the implications of the debate for disabled people. While it is unlawful in the UK for someone to assist someone to die, there are few if any prosecutions. People felt that whatever the reason for that, any law that is meant to protect vulnerable people in society is weakened by its lack of application. There are questions around the terminology "right to die". In UK and international human rights law, there is no right to die. However, there is the right to life, one of the most fundamental rights that we have. People felt that talking about the right to die erodes the fundamental right to life that can be applied to ensure that all people are able to live with dignity and respect for their choices. There needs to be a clear distinction between someone wanting to end his or her life because he or she is terminally ill and wanting control over the implementation of that decision and a person who wants to end his or her life because of the effects of disability. Fundamentally, people thought that, as a society, we must ask ourselves if someone taking his or her own life because he or she has a disability is any different from someone taking his or her own life if he or she is not disabled. Do we as a society accept it more because it is a person with a disability who has ended his or her own life rather than someone without a disability? It is an increasingly complex debate but disabled people argue that society's acceptance of disabled people's deaths is a result of the negative and stereotypical attitudes which see disabled people as passive and non-contributing. If we give this message out to society, are we truly saying that a disabled person has less right to life than a non-disabled person?

We asked if legislation needs to change. People with certain medical conditions have firmly indicated that they want to make the choice and to have control over how they end their lives. These are often individuals with progressive conditions who fear that they may have to end their lives sooner than they would otherwise choose to ensure that they are in control of the decision and how and when it is implemented. They want some protection for their loved ones who may want to assist them at a later stage and who may be open to prosecution under the current law. Disabled people told us and are concerned that, when one looks at the detail, the medical profession makes decisions on treatment based on how it perceives the individual's quality of life. The overwhelming response from disabled people was to ask how anyone, other than the individual, can make that decision.

We took a clear policy position in 2010, which has not changed since, that we are opposed to the legalisation of assisted dying. While we believe that people should have the right to choice and control in their lives, we believe that changing the law for a small number of people would have much wider repercussions on how society values disabled people. The stringent controls that would need to be put in place for the legalisation of assisted suicide would ultimately force the individual to forgo his or her choice. It is not a position on which we have been challenged and it is as applicable today as it was then. The debate continues and as the committee will probably be aware, there have been other attempts to bring in legislation, mostly through the House of Lords. Until society values disabled people as fully contributing members of our society then it is unlikely our position will change. We believe that the risks are just too high. I thank the committee for its time and I am happy to take questions.