Lived experience is a popular phrase these days, but disability rights advocate Sir Robert Martin exemplified the phrase long before it became fashionable.
A tireless campaigner for the rights of the disabled, he in no way let his own intellectual disability stand in the way of achieving what he wanted to achieve.
When Sir Robert George Martin was born in Whanganui in 1957, a difficult birth left him with a brain injury.
Few would have then expected that the young boy would end up a knight of the realm and a United Nations representative, but Sir Robert was no ordinary person.
His childhood was mostly unhappy, and much of it was spent in institutions as a ward of the state. In John McRae’s Becoming a Person: the biography of Robert Martin he described in disturbing detail the inhumane conditions he lived in and the ongoing abuse in places such as Lake Alice.
It was stark testimony which he would later repeat when testifying at the Abuse in Care Royal Commission of Inquiry — a forum which he had advocated for decades to be set up.
In 1972, Sir Robert was released from care and returned to Whanganui, before he left home to work in the care of IHC New Zealand.
Sir Robert soon became more than an employee. He began to educate himself and started to assert himself as an advocate for others with learning disabilities. He led protests and became a rallying figure for campaigns to recognise and protect the rights of the disabled.
IHC chief executive Ralph Jones said Sir Robert’s contribution to the community was unequalled.
"I have known Sir Robert for many years and his achievements were remarkable. We served together for many years on the Council of Inclusion International.
"He made a real difference to the lives of people with disabilities both in New Zealand and overseas. It's an incredible legacy."
He became a council member and 2003 was named Inclusion International's representative on the United Nations Ad Hoc Committee "to consider proposals for a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities".
Strikingly, Sir Robert was the only person with a learning disability involved in the proceedings.
People First NZ national committee chairman Ronnie Sione said Sir Robert was one of the first members of the organisation and led by example.
"People First members and people with learning disability in New Zealand and around the world have sadly lost their leader."
Sir Robert was a lifetime member and told RNZ in 2019 he wanted a leader that looked and sounded like him, and when there was not one, he decided to fill the gap.
"That's why I fought tooth and nail for the likes of People First, the only organisation in New Zealand that speaks for, and on behalf of people with learning disabilities."
In 2016, Sir Robert was the first person with a learning disability elected on to a United Nations treaty body, the Committee for the Rights of Persons with Disabilities. He was elected to a second term in 2020.
Becoming A Person was published in 2014, and around that time his life story was also told in a TV documentary series.
In 2008, he became a Member of the NZ Order of Merit and in 2020 a Knight Companion of the NZ Order of Merit for services to people with disabilities.
At the time, Sir Robert said he was both proud and humbled to receive a knighthood for services to people with disabilities.
Sir Robert Martin died on April 30, aged 67. — RNZ and Mike Houlahan
