The legislative debate over assisted suicide is over, for now, but it will return, reviving familiar antagonisms: One side will argue for choice and the other side, partly represented by disability rights advocates, will argue for protection. Behind the seemingly monolithic façade of the disability rights movement, however, percolates a range of opinions.
One of the writers of this commentary has several disabilities, including terminal cancer. Both of us are long-time activists in the disability rights movement. And we both would consider supporting assisted suicide legislation, if written with stringent safeguards.
Some historical context is in order. It is no exaggeration that the disability movement entered this debate freighted with the genocidal history of its constituency. Quality of life was a value assigned by others. People were denied the opportunity to practice self-determination and self-definition. Stigma, dependence and isolation conspired to create a distinct underclass of the disabled, with every reason to fear for its life.
The movement's message was that criteria for quality of life must be self-generated rather than defined by an able-bodied cabal too frightened of or uncomfortable with disability to fairly assess the experience of a person who has one. This critique expanded the notion of disability from a simple medical diagnosis to a civil rights category.
Is the struggle over? No. People still battle prejudice and devaluation. Vigilance is still a necessity.
All this being true, it is time for the movement to participate in the assisted-suicide debate with openness to the ethical complexity of the issue.
The opposition to assisted suicide may be distilled to five arguments.
First is the slippery slope contention, whereby any bill creates the conditions for descent into state-sanctioned murder. Questionable practices elsewhere are referenced not to open discussion, but shut it down. Nazism is a frequent allusion. Inflated language runs rampant.
Good legislation, however, would take the grease out of a slippery slope argument by creating limitations that go beyond current practices in other places.
Second is the origination argument, whereby the role of Compassion and Choices Inc. (which shares roots with the disability-phobic, and defunct, Hemlock Society) in the sponsorship of numerous assisted-suicide bills is reason enough for some to denounce the proposal. Ideas, however, should be judged on their merits, not on the company they keep.
The third argument flows from the absence of an ideal health system. Until treatment and community support are available and affordable, this argument goes, self-generated actions (assisted or unassisted) to end life will be influenced by inequity. We bemoan the lack of equality in health care, but conceive of circumstances justifying assisted suicide that fall outside the pale of such ideological considerations.
Fourth, opponents maintain that the availability and refinement of palliative care makes the issue irrelevant. But the vexing central questions remain: Should choice be wrested from the individual? And what of the person for whom no useful palliative options exist?
Last, some argue that disabled people require protection from acting upon the false assumption that life with disability is impossible to manage and devoid of joy. Yet one of us, living with her own pending death, wants the right - the choice - to obtain assistance to end her life if and when she feels the need to do so. After all, the two founding principles of the disability rights movement are autonomy and choice. We believe the movement comes near to repudiating its foundations by seeking to determine quality of life for people pushed to unfathomable degrees of suffering.
It is not our purpose here to recommend the precise parameters of future legislation. We propose only the following: 1) Any legislation must be written in collaboration with a diverse constituency, including people with disabilities, and 2) Its language must protec civil rights and the integrity of the decision-making process.
People deserve the opportunity to choose for themselves what they can bear, how long they can bear it and whether or not they may avail themselves of assistance to reach a most personal and final goal.
May Terry has worked for the Disabilities Network of Eastern Connecticut and the Connecticut Legal Rights Project. Elanah Sherman is an advocate at the State Office of Protection and Advocacy for Persons with Disabilities, a group which opposes assisted suicide legislation.