At the tender age of 17, Sam Debattista found out she has Huntington’s Disease – a rare brain disorder that causes the progressive breakdown of nerve cells in the brain.
Despite the discouraging diagnosis however, Debattista took it upon herself to make her years on earth worthwhile by advocating for the legalisation of a practice she wholeheartedly believes in and wants to make use of herself: assisted dying.
Lovin Malta met up with Sam Debattista to learn all about her efforts and struggles in getting this taboo practice legalised.
Rather than viewing the diagnosis as a limiting factor, Debattista took it as an opportunity to make the years she has left as meaningful as possible.
“When I had my diagnosis, that’s when I found closure in something like assisted dying. As a person it made me reevaluate my life and it helped me to stop defining my life by the years that I have,” Debattista said.
“I had this big fixation with living a long and exhausting life and I started focusing more on the experiences and valuing life for the quality, rather than the quantity.”
“I’d never say I’m grateful for it, definitely not, but I found my reason as to why it happened.”
Having said that, whilst choosing to advocate and, eventually, make use of assisted dying seemed like a natural step for Debattista, it wasn’t as easy for those closest to her.
“My family at first, for positively selfish reasons, wanted me to live out my illness so that they could have as many years as they can with me,” Debattista said.
“But ultimately when we started realising what this kind of condition does to a person, we realised that the person I am now isn’t the person they’re going to have in 20, 30 years.”
“They love me enough to put their own wishes aside. They never made me feel guilty for it. They now understand it.”
In recent years, Malta’s general public as well as a couple of its politicians have become more vocal in supporting assisted dying.
Shortly after the news came out that New Zealand voted to legalise euthanasia in a referendum, Labour deputy leader Daniel Micallef came out in favour of the practice. Not only so, but he also added that he will be campaigning hard to see “this right come to fruition when the time comes”.
Newly-elected MEP Cyrus Engerer even suggested holding a referendum on legalising euthanasia, adding that he “really likes” the way New Zealand handled the issue.
However, Debattista remains rather skeptical of Malta’s politicians’ shows of support towards assisted dying.
“A couple of years ago I had the privilege of meeting a minister and they said to me ‘unfortunately this isn’t something that is on the agenda’,” Debattista said.
“At the time I was happy enough to have been heard, but as years went by I started getting angrier and I started thinking: ‘I’ve just been denied the right to be heard, to be represented within my government. This person isn’t doing their job and isn’t taking the responsibility seriously enough. We settle for politicians advocating for things that suit their own personal beliefs but that isn’t the role of the politician’.”
“How can just speaking about it but then turning away when it comes to action be enough?”
In light of this, Debattista has decided to take ownership of the fight to get assisted dying legalised in Malta – and whilst she acknowledged the fact that this will entail a lot of hard work, she is rather positive about the future.
“My next step is to set up an NGO. I want to establish Assisted Dying as an entity in itself – as an organisation that will not go away until its goal has been achieved,” Debattista said.
“What I would like is to have more volunteers. At the moment we’re looking for a lawyer to assist us in the legal aspect. I need someone on board who would volunteer.”
“If that does happen, perhaps within a couple of years, if I’m being overly optimistic, we might see some action, some important action – even if it’s just a few stepping stones, it’s more than what is being done currently.”