You don’t even notice the little things that simplify life. The car parks at Renaissance are wide. There is barely a slope to the front door, which opens automatically at your approach. The lobby is wide and comfortable. The receptionist, eager to please, graciously invites you to sign in at the front desk. She offers you a coffee.
On this sunny winter morning I’m delighted to be invited here and notice these things. I pass into the office area beyond. I meet Barry in the corridor, and he motions me into the meeting room. His assistant Bentley, a gorgeous chocolate Labrador, investigates. But this is my second visit, and I know better than to give him a pat.
Barry de Geest’s van outside advertises his virtue as a public speaker. He is also known for his leadership work in the disabled community, for his service as an elected member of the Auckland District Health Board, and for his work with the Disabled Persons Assembly. He is CEO of a privately-owned company that offers disabled people a “supported living service”. Barry was born with no arms and no legs, a consequence of the thalidomide tragedy of the early 1950s. Although his disability defines him publicly, it is his intelligence and drive that attracts attention.
I know nothing about disability, aside from the fact that about a quarter of a million Aucklanders have one. He is the expert. Today, he talks to me about things that insiders know about and maybe the rest of us should.
There are 116 charities operating in the Auckland region with disabled people as their beneficiaries. We’ve all heard about IHC and CCS, the Royal New Zealand Foundation for the Blind, and other societies that work on behalf of disabled people. These organisations wear their history openly. The CCS began as a Rotary response to the polio epidemic. The IHC was originally a parent co-operative. The Foundation for the Deaf was originally a Lions Club of New Zealand project. These big players in the sector are incorporated societies and registered charities, they are governed by a board, sometimes member-elected, sometimes selected, and are professionally managed. Corporate charities soak up most of the fundraising in the disability sector. They are funded to deliver services, and do so in accordance with a market model that prescribes efficiency and accountability. Their governing bodies reflect changing patterns of governance amongst charities in general in New Zealand, and of course their relationships with members.
“But you can’t be all things, to all people, all of the time,” says Barry. He is making a pragmatic point: you can’t effectively advocate for the empowerment and independence of disabled people if you are a party with a vested interest in service provision.
Barry explains to me about Needs Assessments. Every disabled person is defined by their Needs Assessment. These are done by organisations (called NASC or Needs Assessment and Coordination Services) contracted by the Ministry of Health. They are intermediaries. They co-ordinate the services you will receive, including giving you information about options in a support plan and allocate to you resources and available services.
Barry describes the value of this, and its downside. As you might expect, you don’t get holidays, or even fancy wheelchairs. He whirls around in his, pointing out features I hadn’t even noticed a wheelchair might have. This is a custom-made one, he tells me. The usual wheelchair didn’t come with the particular adaptations he needed. “A wheelchair is my entitlement,” he says. “But I have to take responsibility for the quality of my life and what a wheelchair contributes to that.”
Barry is negotiating the fine line between ‘support’ and ‘dependence’. I am startled to discover that not all those in the disability sector are comfortable with the recent decision that parents should be paid as caregivers. Barry’s philosophy is that disabled people can, and should, be as independent as possible. His view is that services should seek to make themselves redundant.You might get a wheelchair from your needs assessment, but you won’t get funded to develop a business plan, or get micro-financing for a business venture.
Families are never redundant – but they do sometimes get in the way of independence.
Barry de Geest is passionate about those with disabilities developing independence and self-reliance. He sees how families are very emotionally connected to their disabled members. Often, they are very used to making decisions on their behalf. Even though they have the very best of intentions, they can become barriers to the empowerment of the disabled person. “I don’t want to be negative about my family”, he says, “but to make decisions for myself, I needed to leave home.” Well, I can agree with that: Sorry, Mum. I cannot recall anything except excitement and glee about my own flight from the nest at the age of 18! Perfectly able young adults come to that conclusion all the time.
I am reminded of my visit to the Clendon Library, where I met Jessica and Nicole, who have come to the Wriggle and Rhyme session with Jessica’s son Geeva. Jessica has ‘special needs’, Nicole tells me, and Jessica nods in agreement. Nicole is helping her to achieve some simple goals. Right now, 24-year-old Jessica wants to get her driver’s license, and learn to cook. Nicole works with Jessica on Monday and Tuesday mornings, and on Wednesdays and Fridays someone else comes.
Jessica lives with her Mum, her Dad, her two children and her sister. Now she has a husband, she proudly tells me. She met him on Skype because he lives in India right now. She went to India with her Mum, and has now married him. Woohoo! I gather that this marriage is a recent event. It was his dream to come to New Zealand, and now she is going to help him, Jessica tells me. Our conversation ranges wide. Jessica’s immediate goals – for her marriage, learning to cook and getting a driver’s license – are about being able to cope with a new stage in her life. And Nicole’s job is about helping her to achieve those goals.
Families are a big deal. But I am surprised when he tells me that the recent judicial decision about payments to family caregivers may not always be in the best interest of the disabled person. I suspect that this is a very complex view. He believes that the best outcome for the disabled person is for them to be part of a family, able to contribute to the family just as other family members do, on their own terms – and they have to work out those terms for themselves. He pleads: are disabled people never allowed to learn from failure?
He tells me about a phone call he received one afternoon from an angry parent, whose intellectually disabled daughter had taken the bus on her own. She got lost. She had her mobile phone with her and rang her Mum, asking for help. Mum was frightened, and angry, about the danger her daughter had been put in. Barry’s response was the opposite of what she expected. “Isn’t it wonderful that she had the nous to ring up and ask for help? Making that call was a big step forward: she took initiative. How will she ever learn to use the bus if she isn’t allowed to make a mistake? Guess what? She won’t forget what to do next time”, he told her.
“You can never be sheltered from your disability,” he says. “I had to cope with being laughed at, at managing things when others were thoughtless. I had to develop resilience. We don’t need people to do things for us all the time – but we do need facilitators who support us to learn, in our own way and in our own time. The state picks up the tab for the basics: but it’s your quality of life,” he emphasises, “and so it’s important that you take as much responsibility for it as you can.”
It’s part of his company by-line. “It’s your life, your vision”.
And here is where we get to the nub of our meeting. He pulls out statistics. People with intellectual disability are more likely to live in the most socioeconomically deprived areas of New Zealand. 39% of disabled adults aged 15–64 years have an annual personal income of less than $15,000, compared to 28% of non-disabled 15–64 year olds. All of the disabled people that he knows are on a minimum wage or under.
“This is an aspect of poverty that people barely talk about. The government funds personal care, home support and essential equipment; that is a social entitlement and a hallmark of a caring society. We shouldn’t expect more. But where’s the venture capital for a co-operative business or an enterprising idea?” he asks. “Where’s the funding to assist disabled people in shared learning experiences that address things like healthy eating to prevent obesity?”
Barry is complimentary about those 116 organisations that offer support to the disabled. He notes that children tug at the heart-strings, people like delighting children, and so there is much energy put into things like StarJam. But he thinks there is a gap in support for productivity, independence, self-determination, integration and inclusion among the 16 – 64 year old disabled people, those who can become more self-reliant with just a bit more support.
His next mission is to establish a foundation that offers disabled adults discretionary tools for meeting goals: to earn a good living, to participate in learning, to be innovative and entrepreneurial. To find pathways out of poverty. It is a philosophy that is growing in currency. He doesn’t want a foundation that is about hand-outs. He thinks that what disabled people do need is a vehicle for funding enterprising ventures, business plans, learning experiences that lead to true financial and social independence.
He’s currently looking for trustees to be part of that journey.