Tuesday, September 20, 2016

This time we rally

Our hopes and fears are the same as every other parents’. The future we want for our children is one in which they are independent, happy and able to participate in society as equals. Isn’t that what everyone wants? Some may call it emancipation, a word that has a general meaning for adults and another, narrower one for children wanting to take control of their lives. In either case, emancipation is best thought of as a long process which, for best results, should begin as early as possible in a person’s life.

It was the very first piece of advice we received when our daughter Lucia was diagnosed with autism, aged three. In fact, it was delivered to us at the same time as the diagnosis. ‘Teach her to be independent as soon as you can. Start now.’ We took it to heart.

It begins in your social circle, with the people that surround you. It is grounded on a set of shared values, chief among which is that every person has a right to belong, to be included. You have a relative degree of control over this environment and make it a place where a desire for independence is nurtured. But true independence can only be measured against the wider society, which in the case of disabled persons is dominated from the outset by several layers of institutions: health services, social services, schools. You have little or no control over these. Luck plays a major part, as do your personal means and circumstances. Disparities of expectations and treatment are enormous, and the experience of most people who raise disabled children in New Zealand is one of constant and exhausting struggle against one or more of these institutions. Sometimes all of them at once.

I have written about this many times. We keep having to say these things. So this week for a change we’re going to rally.

You may have heard of the latest raft of changes to what used to be called special education. First of all, our education authorities decided to do away with the name. That is a fine idea in principle. Advocates eschew terms like ‘special education’ because it is overtly exclusionary. When the institution does it, however, this ‘making everyone the same’ only works so long as the principles of inclusion are truly embraced. Otherwise, it becomes a tactic to make first the disability, then the person invisible.

The main plank of the ministry’s new plan is to shift spending to early education, with the expectation that it will reduce spending later in the educational life of the child. This, too, is a fine principle. It’s just not a principle that can be left in the hands of the people who for twenty years have refused – and continue to refuse – to do something as basic as counting our children.

Every consultation in this area works in the same way: parents and educators are assembled in front of a ministry facilitator in firm control of the agenda and the term of the exercise. The exercise is always the same: to tinker at the edges of a system that works just fine. The outcome is also always the same: parents and educators pointing out that the system as is being described to them is very different from the real one, in which under-resourcing and exclusion are the norm. But the exercise has no box in which to put these contrary opinions. None of the group activities allow for participants to take over and set the terms. The voices of students are the least frequently heard of all.

And so over time two realities have been allowed to develop. The official reality carefully constructed by government by studiously refusing to conduct proper surveys, and by teaching school administrators the language they should use to self-assess as being inclusive (so that the system as a whole, in turn, can describe itself as such); and the reality reported by teachers, students and families. The lack of funding for proper studies allows government to occasionally dismiss this second reality as ‘anecdotal’. However, the few times that people are actually called upon by the institution to give evidence – as in the case most recently last year of the enquiry into the supports for dyslexia, dyspraxia and autism – it becomes clear that this second reality is far closer to the lived experience of students with disabilities.

This is what enables the likes of David Wales, the National Director for Special Education, to claim that this latest plan to shift resources to early intervention will not result in any of the older children missing out. This is an entirely paradoxical position. Since we have already been told overall funding will not increase, of course older children will miss out: a blanket is being pulled, and we’re not getting any more blanket. But – and this is the beauty of the plan and the genius of the bureaucrat – the early intervention will reduce the need, as judged by the people in charge of telling us that things have been fine all along. The special kids will stop being special. They will be cured of their life-long disabilities by a subtle change in the modelling. At no point will they or their families be asked to determine what inclusion means to them and how it should be achieved. This degree of freedom cannot be given to us.

We asked our youngest son, who also has autism, to draw a picture of children at school together. It was his school’s principal who had the idea that he may help us illustrate our campaign. Ambrose, who is eight years old, thought of children of different colours and shapes. His understanding of his own difference is still forming. In so many ways he’s one of the lucky ones, and still things are very hard for him and for us. That they might get worse doesn’t bear thinking about, but we have not given up on the radical idea that they should get better. Help us by joining us this Thursday afternoon at 4.30 on the grounds of Parliament. It will be a family friendly event, and we need as many of you as can make it there with us.

More details of the events are here, and there is a Facebook page in which you can register your interest. Check back for more information including the link to an open letter by the organisers to minister Hekia Parata.

For a recent independent view of the supports for children with disabilities in our schools, see the report released earlier this month by Youth Law Aotearoa.