Sir Robert Martin was a survivor of abuse in care who was integral in fighting for an inquiry. He passed away while waiting for redress and an apology. One of his meeting assistants, Alexia Black, remembers him.

Unbelievably, it has been almost three months since Sir Robert Martin KNZM died peacefully in his home in Whanganui. He died 20 years before he should have – just like the statistics predicted. Disabled people, organisations and leaders across the world have continued to publicly share their shock and grief and put into words the tremendous impact that he had on global disability rights.

I know for those of us in the disability communities of Aotearoa, we have always celebrated Robert’s achievements. But mainstream Aotearoa, and our mainstream media, consistently saw Sir Robert as a small story and didn’t pay him much attention. You mention his name in non-disability spaces around Aotearoa and very few people will have heard of him. It bugs me.

When Robert was elected to the United Nations Committee on the Rights of Persons with Disabilities in 2016, it felt like the biggest story in the world. No one with learning (intellectual) disability had ever been appointed to the UNCRPD Committee, let alone any UN human rights treaty body – but it was barely picked up by the New Zealand media. That was curious. Here was a story about a New Zealander doing amazing things on the world stage – surely it was something the nation should be celebrating? 

Over the course of the next seven and a half years, Robert moved mountains. As an unpaid independent expert, he worked extremely hard. When the committee was in Geneva, Switzerland, Robert worked six days a week, up to 12 hours a day, for up to six weeks at a time. When he was in New York, he could meet with up to 75 countries in a week – individually. When Robert was at home, the UN work continued, alongside his actual paid job delivering junk mail to the people of Whanganui, a job he had done alongside his wife Lynda for many years.

As a leading voice internationally of the self-advocacy movement, Robert was also integral in fighting for the Abuse in Care Royal Commission of Inquiry, particularly from a disability lens. The final report is being released tomorrow, which he won’t be able to witness. His advocacy ensured the voices of disabled adults were included, in a 2017 keynote address Sir Robert called for the Inquiry to look into what happened to disabled adults, and not be limited only to foster children. “We can’t just do one part of society and not include the other parts of society,” he said. Robert helped ensure hundreds of disabled people were heard.

Robert was a wonderful orator. When he spoke, he often brought rooms of politicians and diplomats to a standstill, especially when he went off script and spoke from the heart. His 2018 visit to the Spanish Congress of Deputies famously contributed to a change of legislation there, allowing persons under guardianship laws to vote in national elections for the first time. After he spoke at the 2019 UN Conference of States Parties about the irreparable damage done to children and young people within institutional care, a leader of a highly respected international organisation said “that was possibly the most powerful speech I have ever heard”. He then went on to state why the world needed to keep the option of institutionalising disabled children “on the table”. 

At the end of 2019, Robert George Martin became a sir, the first person with learning disability in the world to be knighted. It was an incredible achievement. Surrounded by secrecy and supported by government press staffers, we held a press conference for journalists to be able to meet with Sir Robert, before the public announcement. One media organisation turned up. One. It turns out, positive disability stories just don’t sell. On new years eve 2019 when the news broke, Sir Robert’s new honour (which he accepted on behalf of all people with learning disability) was a mere footnote to the knighting of an ex All Blacks coach. 

In 2020, Sir Robert was in New York just as Covid made its way across the country. We got home just as New Zealand closed the borders and just before New York experienced a surge in Covid deaths. A few days afterwards, Sir Robert became very, very sick. It wasn’t Covid but it had all the hallmarks, and he was as high risk for severe infection as they come. 

Robert was an international celebrity of the disability rights movement, followed by paparazzi in Spain, adored by PhD students in Ireland, almost worshipped by disability advocates in Japan and South Korea. But here in New Zealand, Sir Robert was just another older disabled man on the benefit, who lived in a cold house and hated hospitals. Getting healthcare workers to take his illness seriously, give him instructions he could remember and follow, and realise the danger of sending him home to self-monitor his symptoms was almost impossible. At one point, they even said to him “look, there are other people who need these beds.” He got really depressed after that and said to me “see, we still don’t matter”.

Now, as we start to settle uncomfortably into this new world where Sir Robert is no longer here to lead us, we need to face the fact that we now hold the baton he carried for so long. There are so many issues to tackle, but I think it’s time we take a serious look at how we view and treat disabled people in this country. 

Because if that’s how we treat a knight with a disability, how are we treating the disabled people who are truly invisible?