No easy medicine for policy nausea - Helen Zille

DA leader says the system betrays those with unpreventable conditions

Co-incidentally, this weekend, I attended two unrelated but uplifting events with deaf children and their parents.

The first was the 25th anniversary of the first Cochlear Implant at Tygerburg Hospital by Professor Derrick Wagenaar and his team, whose skill and dedication first gave the gift of sound to a young woman on 4 November 1986. Since then 424 people have benefited from this extraordinary technology.

The second event was a talent contest for deaf children (and for the hearing children of deaf parents), organised by DEAFSA to celebrate national children's day.

Attending these events teaches me more about public policy than reading a pile of government reports.

At the first event, the audience was enthralled by young children, born profoundly deaf, reciting poetry and talking more fluently than many of their peers. Before cochlear technology, these children would never have mastered spoken language. It borders on the miraculous when one considers that hearing is the only one of the five senses that human technology can now create and restore!

The absence of any one of these senses (sight, taste, touch, smell and hearing) has a profoundly debilitating effect on the life of any individual. The particular devastation of deafness is that it cuts a person off from other people. Without appropriate early intervention, deafness deprives a child entirely of language, either signed or spoken. If the language acquisition stage in early childhood is missed, it is almost impossible to regain.

Language is an indispensable component of being human. Without it we cannot describe things, ideas or feelings. We cannot connect with others. We are isolated, frustrated, alone -- to a degree that anyone born with the gift of hearing cannot imagine. What makes things so much worse for many deaf children is that they are often a source of embarrassment to uninformed parents. These (often highly intelligent) children are sometimes left alone locked in shacks -- desperate, deeply unhappy and more vulnerable to abuse than any others, because they have no voice.

That is why it came as a hammer-blow to the head when Mrs A Muller, the Audiologist and co-ordinator of the Cochlear Implant Unit, told me that 40% of children whose lives could be transformed by cochlear technology, do not receive implants due to lack of funds.

The next morning, as I sat watching the DEAFSA talent show, where some of the children danced to the music vibrations they felt through the floorboards, I asked myself how many of them were part of the 40% who could have benefited from the right to spoken language had we allocated the necessary funds?

Asking oneself this kind of question engenders stomach-churning policy nausea.

There are protests outside my office every week on almost every conceivable issue. Why is no-one out there protesting for the rights of these children? Is it because people with disabilities are not regarded as fully human? Is it because we think we can make a few allowances on the margins of society to make their lives more bearable, without doing what is needed to enable them fully to live lives they value?

This policy failure is aggravated by the fact that the Western Cape spends well over 50% of its R13,3-billion health budget every year on PREVENTABLE conditions (and our health budget is the largest component of the provincial government). Free treatment in government hospitals and clinics for these conditions is now considered a basic "right". Once the PREVENTABLE diseases have been allocated the funding they require, we dish out the inadequate scraps to treat the debilitating unpreventable conditions.

Apart from being ethically indefensible, this policy has further widened the gap between "rights" and their essential corollary -- responsibility. For almost a decade, many AIDS activists defended the right to privacy in the sexual domain -- while demanding the right to full and free HIV treatment. Thus it became politically "incorrect" to condemn the widespread practice of multiple concurrent sexual partners.  Most people now know that unprotected, inter-generational sex with multiple partners is the AIDS superhighway that carries this incurable disease to every nook and cranny of Southern Africa and perpetuates it from generation to generation.

Yet our response has largely had the effect of fuelling further denial and dependency by absolving rational (usually male) adults from the responsibility of changing their behaviour. Taxpayers must foot the bill without asking any politically-incorrect questions. Enough already! Especially when one confronts the under-funding of so many treatable health conditions.

(To avoid any misunderstanding, the Western Cape will continue to provide the most comprehensive HIV-AIDS treatment in the country -- at an annual cost of almost R2-billion including R1,2-billion from the Global AIDS Fund. But we will ALSO ask the necessary questions and make appropriate demands for behaviour change.)

Apart from HIV, there are the "lifestyle" diseases occasioned largely by substance abuse (alcohol, smoking, drugs, over-eating) that cost the country tens of billions each year. It is worth pondering on our budgetary priorities when kidney patients are sent home to die because the state hospitals cannot afford their treatment (R100,000 per week); or when schools for the Blind cannot afford Braille printers (up to R150,000 each); or when a poor father risks his life by rowing a small boat from Port Elizabeth to Cape Town to raise the funds he needs for the operation that will enable his blind daughter to distinguish between light and dark. Every time a government Minister (or any other man for that matter) indulges his predatory sexual urges, may he think of this father on the high seas, trying to save his daughter from a life of perpetual darkness.

But for anyone prone to policy nausea it would be best to avoid reading the annual report of the so-called "Ministry for Women, Children and People with Disabilities".

The money the ministry spent on international travel for super-sized delegations to (ostensibly) attend conferences would probably have paid for cochlear implants for every child who could benefit from this life changing operation.

Just one example: Four months after being appointed to her position, Minister Lulu Xingwana started racking up her frequent flyer miles by leading a delegation of 49 officials to a UN Conference in New York. The trip cost R6,8-million. (The SA Mission at the UN actually complained about the excessive size of the delegation!) Many of the delegates stayed at the Ritz hotel where rooms start at R5,500 per night.

What's more, many of them did not attend the conference sessions. One can only presume they did not want to interrupt their shopping.  The Minister defended this situation afterwards by saying that her department only paid for eight of the delegates. And, she added (after her most recent jaunt to Chicago with a group of businesswomen), it was "unreasonable" to expect her to stay in a "pondok" or fly "lala" class.

It is not surprising, given this attitude, that the Department overspent its administration budget by R8,8-million largely due to overseas trips by officials. And, presumably because they were so busy travelling abroad, the department FAILED TO SPEND R5,6-million of its R7,1-million budget earmarked for the "Rights of People with Disabilities". Tell that to the father who rowed from Port Elizabeth to Cape Town.

Or the parents of children with profound intellectual disabilities who had to take the provincial and national government to court to demand adequate funding for the treatment of their children. I thank them for doing so. They have taught me a great deal about budgetary priorities.

But how does one bring these insights home to the national Ministry of Women, Children and People with Disabilities? Their attitude is best illustrated by a letter they sent me in May 2010, when the hapless Noluthando Mayende-Sibiya was still the Minister.

The letter requested the Provincial government to identify children to participate in a Children's Day celebration in Parliament. When I raised my concern that the event was scheduled to take place during school time, the Ministry adapted their plan. Not by changing the time, as one would have expected, but by changing the children it was targeting. The Ministry duly wrote back asking "provinces to mobilise 10 children who are out of school, meaning children living on the streets."

In other words, to celebrate children's day, the Ministry wanted all nine Provinces to collect street children and transport them to Parliament to participate in an event, after which they would (in the absence of any indication to the contrary) be returned to the points where they were picked up, to continue living on the streets. 

Instead of the "Children's day" budget being allocated to housing, feeding, schooling and clothing these children, it was being spent on an event where they would be required to wave little flags and form a guard of honour for VIPs. This symbolises this Ministry perfectly. There is a complete inversion of priorities. The vulnerable people they are supposed to serve end up having to serve them.

And, when you next suffer a bout of policy nausea, let us remember that, in a democracy, people get the government the majority voted for.

This article by Helen Zille first appeared in SA Today the weekly online newsletter of the leader of the Democratic Alliance.

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