Planning your death is difficult for most people – and it is no different for people with a disability. Like everyone else, we wish for a safe, peaceful, and compassionate death.
Some members of the disability community have raised concerns over how people with disabilities would be treated, should Victoria legalise voluntary assisted dying. However, I think they are confusing two issues – access to good quality healthcare and access to voluntary assisted dying.
This confusion has come about because of the treatment that some people have received from the health system. They are often not consulted about treatment or assumptions are made about their capacity to make decisions.
For the past 15 years I have been advocating for better access to health and justice services for people with disabilities. We have the same rights and responsibilities as other Victorians and should be able to access all the services available to others.
People with disabilities are treated badly by the health system. There are some distressing examples of assumption that people will want to die because they cannot move or support themselves. Some have been denied access to screening processes because they are in a wheelchair and it is a no lift hospital. In other cases, women with disabilities have had their children revoked from their care simply because of assumptions by social workers about their capacity to parent well.
But this is not about access to healthcare; this is about the right to be treated as autonomous adults, as enshrined in Victorian legislation and the UN convention on the rights of people with disabilities, to which Australia is a signatory.
Recognising the concerns that have been raised by some members of the disability community, I was invited by the Victorian minister for health, Jill Hennessy, to be a member of the ministerial advisory panel on voluntary assisted dying (the panel).
As a member of the panel I have worked alongside medical, health, legal and community experts to ensure concerns are identified and addressed.
The panel consulted more than 1,000 Victorians, including those with disabilities who believed they should have the same rights and protections as other members of the community in relation to end of life care. They stated that they should not be denied access to voluntary assisted dying if they met all of the eligibility criteria.
I acknowledge that there are still societal views, which equate having a disability with living a lesser life. Some people with disabilities said they feared that they could be pressured into applying to access voluntary assisted dying. This legislation is not about disability; it’s about anyone who is dying in intolerable pain – whether they have a disability or they don’t.
The framework the panel presented to the Victorian government includes safeguards to ensure that people with disabilities have to meet the same eligibility requirements as everyone else, and that they are the only person who can raise the issue with their doctor. Not their family members, not service providers, not their carers.
The safeguard of requiring a person to have decision-making capacity to request voluntary assisted dying is designed to ensure the request is the person’s own, is voluntary and is not the product of undue influence or coercion.
The concerns of the disability community have been met, through the inclusion in the bill that merely having a disability will not meet the eligibility criteria, an acknowledgment that all lives have equal value and that we have the same rights and responsibilities as other Victorians.
I am proud to be a Victorian with a disability. My work as an advocate and activist brings me into contact with a number of other people with disabilities who seek my assistance to have equitable access to the same services that the rest of us take for granted.
My role in ensuring good quality health care continues alongside my work in making certain that Victorians with disabilities, together with the rest of the community, are able to access all aspects of end of life care and have good deaths.
- Tricia Malowney is a disability activist and advocate. She was a member of the Victorian ministerial advisory panel on voluntary assisted dying