My cousin Brendan

(First published in the Nelson Mail and Manawatu Standard, October 26.)]

I was privileged last week to attend an unusual funeral in Nelson.

It was the funeral of a first cousin whom I barely knew. Brendan was born intellectually disabled and placed in care while still in in infancy. He was to remain in the care of the state all his life.

As was often the way then (this was 1953), his parents were advised that institutionalisation was the best course, both for him and for them.

Brendan was sent to the Braemar Home in Nelson. We can barely imagine the heartache this caused his parents, a warm and loving couple with one other child, an older daughter.

Letters that Brendan’s mother wrote to Braemar inquiring about his health and wellbeing give a small insight into the pain and grief she must have felt at giving up her baby son. Reading them today (they were kept on his file) is painful. But parents in those days were more inclined than they are now to defer to “expert” opinion. Doctors knew what was best.

In the wider family, Brendan was barely mentioned. It was normal in those days to draw a veil over such matters – not out of shame or fear of stigma, but more as a way of coping.

Attitudes were different two generations ago and it’s pointless, and I think unfair, to judge what happened then by today’s standards. People put heartbreaking events behind them and got on with life as best they could.

As it turned out, Brendan’s mental disability wasn’t severe compared with some, and, in hindsight, less limiting than his parents (who died many years ago) were led to believe. Today a child with his impairment would probably be raised at home and possibly even sent to a mainstream school.

Brendan grew up at Braemar and from the very start, it seems, was showered with love and affection by those caring for him. Although his communication skills were limited, people were drawn to him by his engaging, outgoing personality and obvious enjoyment of life.

In the 1980s the government adopted a controversial policy of de-institutionalisation which resulted in Brendan being moved from Braemar into the community. This meant living with other intellectually disabled people and caregivers in an ordinary suburban house.

The benefits of de-institutionalisation are still being vigorously debated today. It’s fair to say that the policy worked well for some but not for everyone.

In the case of mentally ill people, as opposed to the intellectually disabled, it often had adverse consequences. But Brendan seems to have thrived in the new environment.

The many photos displayed at his funeral were evidence of a full and active life. He enjoyed trips to the North Island, accompanied by a caregiver, to visit his sister and a much-loved aunty who took a close interest in him and encouraged his love of music.

When the plane touched down on these trips, a delighted Brendan would thrust his arms aloft in the thumbs-up signal and loudly call out “Good one!”, much to the amusement of his fellow passengers.

He was taken on a two-day kayaking trip in the Abel Tasman National Park. He took a flight in a light plane and drove a go-kart and dodgem cars (his caregivers drew the line, though, at bungee-jumping).

He loved Maori culture and the haka, which he pronounced “ha-ha”. One photo showed him proudly posing with a grass-skirted Maori entertainer in Rotorua. Brendan’s principal caregiver for more than 20 years, a cheerful, no-nonsense nurse named Lyn, joked that he had such an affinity for Maoridom that people wondered whether there was Maori blood somewhere in the family (er, not to the best of my knowledge).

Brendan’s physical state deteriorated in recent months and he was moved from the home where he had lived for several years to another that provided a higher level of care. He developed pneumonia and died peacefully on a Sunday morning, not in a frightening and unfamiliar hospital ward but in his own room, surrounded by people and things he knew. He was 58.

As I said at the start of this column, I barely knew Brendan. I now wish I’d known him better.

I went to the funeral with my sister not knowing quite what to expect, but it was a joyous occasion. Rain was forecast but never eventuated, so we gathered in the bright Nelson sunshine on the deck of the spacious, modern home in Richmond where he spent his last weeks.

Brendan’s caregivers, present and former, turned out in numbers, as did his fellow residents (or clients, as they’re called these days). There was a lot of laughter – they’re a jovial bunch, these caregivers – and a few tears.

The stories told about Brendan portrayed a man who, for all his disadvantages, led a full and happy life. He certainly deserved to be more than a dark family secret, as was once the fate of such people.

For me, it was something of a revelation to learn of the warmth and devotion that surrounded Brendan in death and in life.

Most of us think that looking after the intellectually disabled must be a particularly thankless field of health care, but there was no mistaking the love and dedication of the staff who gathered to farewell my cousin, or the reward they got in return. I was told that Lyn had postponed retirement several times so she could continue caring for him.

Another nurse told me Brendan would rush up and cuddle her when she turned up at work each day. “What other job is there,” she asked me, “where you’re greeted with a hug every morning?”

Some of Brendan’s fellow residents are immobile and incapable of communicating or doing anything for themselves. It takes a particular type of person to do this work: someone possessed of infinite patience and able to see that inside the helpless body and contorted face, there’s a human being who deserves love, attention and affection.

Very few of us are equal to this challenge, yet society’s ability to care for those totally dependent on others is a fundamental measure of our humanity. We are collectively in the debt of these largely unsung heroines and heroes.