DURING the holidays I spent time with family and friends and was reminded that not all relationships are easy to navigate.
This summer, I was delighted when, after an older man peppered a young woman with intrusive questions, she responded assertively. Her generation is much less likely to put up with rudeness and inappropriate behaviour than mine was. The MeToo movement is showing us just how much pain silence has caused, how often power has been abused.
The term, self-advocacy, refers to occasions when we speak up for ourselves, expressing our needs and emotions. We all started life as healthy self-advocates, crying to let our parents know when we were hungry. Yet negative childhood or adult experiences of intimidation or punishment for speaking up can leave us with low self-esteem.
As a parent, going to a parent-teacher interview for the first time, I remember feeling disempowered when I walked through the school gate. I figured this reaction related to my experience of schools as a child, when the power was firmly in the hands of the teachers.
Past experiences can trigger negative emotions decades later.
Older generations, having been brought up to believe those in authority know best, can be reluctant to ask questions of the myriad medical professionals we depend on as we age.
This can be to their disadvantage.
Advocates support others to be heard and to have their needs met. They can be family or friends, colleagues or people in paid advocacy roles, such as union delegates, refuge staff or advocates in the health sector. Their role is vital, as our opportunities and even the shape of our lives, depend on people with power over us. Professionals, landlords and employers decide on our health care, our pay rate and our living circumstances.
We all have the right to advocacy support. As a tutor of adults I once had a student, who was intimidated by school staff. They would summon her to meetings to discuss her disabled child and, when she arrived, there were often five or more professionals in the room.
Once she learned she had the right to support, she invited other members in her class along. Her half a dozen observers, even though they remained mostly silent, meant her views were more easily expressed, heard and acted on.
In the health and disability field, knowledge of your rights makes a real difference. The 10 rights, conferred on us all by the Health and Disability Services Code of Rights, are strong in their wording and intent. We all have the right to be treated with dignity and respect, including respect for our culture. We have the right to a good standard of care and full information expressed in a way we understand.
It is particularly hard for people in residential homes and rest homes to complain, as they fear jeopardising their place in the home. When I managed an advocacy service I was approached by a couple in a rest home. When speaking to an auditor they had said something the manager did not like and she asked them to leave.
In such circumstances the code is clear: you must not be treated worse if you make a complaint. The couple decided to leave but the rest home apologised and covered their expenses.
That was more than two decades ago, and I would like to believe things are vastly improved. However, the case notes and decisions on the Health and Disability Commissioner’s website (https://www.hdc.org.nz/decisions) show that things still go wrong too often.
Back in 2001, after seeing how much advocacy was needed, I developed and facilitated advocacy courses, mainly in the disability and mental health arena. I learned much from the stories participants shared over the years.
In Eastern Bay Villages a small number of advocates have made a real difference to people’s lives. This year we hope to offer this support more widely. To this end I will facilitate a free four-day course in advocacy to people of any age with a small amount of time to support others to access health care, benefits, housing or home care services. This is a great role for retired legal executives, medical staff and social workers but anyone confident to speak up to people in authority is welcome to apply for a place.
Knowledge of our rights often spurs us to act, so we are planning two public meetings on the Health and Disability Services’ Code of Rights. This code applies to home care and disability services and rest homes as well as to doctors, hospitals and chemists. All are welcome.
The meetings are being held on Wednesday, February 12, from 10am to 11.30am at Knox Presbyterian Church, 83 Domain Road, Whakatane and on Tuesday, February 25, from 10.30am to 12 noon, St David’s Church Hall, College Road, Edgecumbe.
Grey matters by Ruth Gerzon