Today media coverage has focused on Wellington woman Margaret Page's stated intention to starve herself to death. This follows the reported denial of a piece of supportive equipment by needs assessors employed by the Capital and Coast District Health Board.

The focus of the euthanasia debate has always focused around the rights of every individual to do as they wish with their bodies. That includes the right to elect when to die, especially when terminally ill. What has long been missing from the debate is a disability perspective on the issue. As a person who lives with disability, I can say that it is not the state of our bodies or minds which determines the quality of our lives but rather societal attitudes and barriers.

Therefore, what I'm explaining in simple terms is the social model of disability which, as a disability activist and advocate, I adhere to. While there are academic debates around defining the social model, the above description best captures its essence. Before going any further too, I must acknowledge that the issue of euthanasia is a divisive one within the disability community in much the same way as it is in the wider community. Both pro and anti-euthanasia advocates can be found within the disability community at both the local and international levels. The issues around valuing the lives of disabled people came to the fore within the New Zealand disability sector as a result of the genetic engineering debate in the late 1990s. This forced this country's premier disability rights organisation, the Disabled Persons Assembly (DPA) to throw together a compromise resolution on value of life issues in late 1999.

What today's debate around the fate of Margaret Page does expose is two things.

Firstly, inadequate government funding for disability supports such as modified equipment. Having access to disability supports (which can range across the spectrum from equipment to housing modifications to mobility aids to personal care and home help) often enhances the quality of life and independence of disabled people. As I know from my own experience and those of others, having support means that we can successfully live enriching lives within our communities. It appears that Mrs Page has been denied a piece of equipment which, she feels, would enable her to live effectively. It also appears too that living in an institutionalised environment (such as the St John of God Hospital) has probably contributed to her depression. Those of us in the disability community know only too well that institutionalisation means a lack of freedom, dignity and choice, no matter how well the institution attempts to dress this up (as the hospital chief executive tried to do this morning on National Radio).

My belief is that Margaret (and all other disabled people who continue to reside in institutions whether they be rest homes, long-term care hospitals or community group homes) should be able to live as I do in their own homes within the community with full government funding for supports designed to meet THEIR needs and not those of the system. Some of you might be thinking this is impossible, costly and expensive. Well, there may be a need to spend more taxpayer money initially in order to fully deinstitutionalise this country once and for all but it will cost less in the long-run if we completely get rid of any institutions, even those that mascarade as care homes. I'm also prepared to stick my neck out and say that too much money is currently diverted into large-scale mini institutions for both older and disabled people in the community rather than into providing the individual and community supports that can not only improve the quality of life for disabled people but their longevity as well.

Secondly, there is the obvious devaluisation of the lives of disabled people. I was listening to Mrs Page's husband Brian on National Radio this morning and he pointed out that, essentially, if she were a younger and able bodied person, then every attempt would be made to prevent her from committing suicide through appropriate mental health service intervention. But as she lives with permanent impairment due to stroke, then the message that society is sending her (and by implication every other high needs disabled person) is that you're better off dead, it's dreadful that you've had a stroke (or other impairment), you must be suffering you poor dear!

After hearing that crap from people, I would be driven to wanting take my life too! In fact, in the past, I have had two bouts of clinical depression for which I have successfully been treated. I don't think this is happening though in Mrs Page's case. Although I am extremely wary of any move that seeks to compulsorily treat people with mental illness, I would say that she could benefit from some positive intervention (perhaps in the form of stronger advocacy). As it stands at the moment, only her husband appears to be going into bat for her as the rest of her family (from all reports) are acquiescing in her death wish. And all this is being supported by the law which (rightly) grants the right to either accept or refuse treatment to individuals. 

However, as I know (along with countless other formerly depressed New Zealanders) is that Mrs Page is probably not expressing her real feelings. She probably sees death as the only option and that is the case when you are depressed for any reason. While I understand that a mental health assessment has been done which has found her to be competent, I don't believe that it has been done properly enough. In my own case, when I was depressed the first time around, I was misdiagnosed as not having any depressive symptoms but when it returned six months later, I was taken to a psychiatrist (by some desperately worried parents) who came to the correct conclusion. From what I can gather, Mrs Page lives with the impact of a severe stroke suffered twenty years ago but she does not have any life threatening condition. 

In my view, euthanasia should only be permitted when a person has a medically certified terminal illness and is at least six to twelve months away from possible death. They should be in some degree of pain that could increase and not be able to be controlled in any substantial way. I believe that any person should be able to apply to an ethical body which would assess each case. Any such body should include not only medical and lay people but also disability and mental health consumer advocates. In any legislation, there should be a very clear distinction made between terminal illness and disability. Furthermore, any definition of disability should be based on the social model and this will mean that any candidates who present a case for euthanasia due to their, for example, living with paraplegia or quadriplegia as the result of an accident would be declined but with the proviso that they be referred to ongoing counselling and that other appropriate supports are provided to them.

While Mrs Page's plight is a difficult one, she is not alone in either being rejected for specialist equipment or living with a possible (undiagnosed) mental illness. On both counts, I believe that Margaret Page is not a candidate for what is, effectively, voluntary euthanasia. We should not let her die but the best way to prevent her from doing so is through urging that government and other agencies provide the right and appropriate supports for her to live a full and quality life (or what remains of it naturally) within the community. After all, denying her the full and appropriate support she so badly needs is the real human rights issue here and not that of her right to die! Let us not forget that!