A few years ago I started the first parent forum of children with special needs in Neel’s school. This was encouraged and initiated by the school and I took my task seriously. It was good that I did because the experience taught me my first lesson in Inclusion advocacy.
Lesson No.1. Disability is political.
After the forum was formed it was not long before I was replaced. And over the years the school’s initiative has been towards electing as parent representative, one, of a child least disabled. Unlike of course my son who has many severities, and therefore a mother with many demands. And this mind you is a progressive innovative school. It made me recall the British Raj when brown sahibs were used to keep in check the unwashed masses.
The need to discriminate and demonise disability runs deep, a lot like racism, sexism and religious bigotry. And for disability, like all marginalised communities the only reprieve comes from the law. A law with a long disabled arm that has not been able to implement its intentions.
Still it’s thanks to the law that children with special needs are considered for admission and again it’s thanks to the law that no suicides take place any more in school for fear of demotion. Pale caricatures of inclusion is grudging assent given by schools as if under gunpoint. The attitude shows in the ways schools have found to circumvent the law. This is where education practices get pernicious, something parents of neurotypical children should beware. The mandatory disability criterion set by the law is met by poaching on the stragglers, the backbenchers, the dreamers of the class. Labels of ADHD, LD, dyslexia are signed off against their names like birth certificates. They are quarantined in special education rooms for one to one sessions with special educators who understand disability as much as giraffes understand elephants. If this were a book the farcical nature of these one to one sessions would be an entire volume.
Many parents encourage this, exulting on the extra attention their child is getting. It has probably not dawned on them that what they think is attention can pretty accurately be defined as neglect. Neglect of participation in classroom and peer related activities, so essential for development of the emerging self. Neglect that increases the gap between the child and peer milestones . After the age of fourteen the benevolent RTE jurisdiction for compulsory education ends and the school’s mad race for percentage averages in board examinations begin. Your child is gently sometimes not so gently herded to the alternative NIOS where percentage averages don’t matter. No issues with NIOS, many parents of children who do not want to be subjected to the pressures of formal board exams opt for it. But since NIOS averages don’t count in building the school’s academic reputation, a trophy created by marks hungry ambitious parents like us, NIOS students in schools are not given the attention a board student will get. NIOS students get refugee status of second class citizens. But obviously, their marks don’t matter.
There are hardly any reliable statistics for the disabled population, in many places they are not even listed in the vulnerable category. It’s as if they don’t exist. So it is very difficult to ascertain how many admitted children labelled with special needs end up NOT taking the NIOS, i.e. are registered for formal board exams like the ICSE, CBSE, IB etc. My hunch is very few, sometimes none at all. If you have heard of cases I would be pleased to stand corrected. I do know that most schools with elaborate special education well segregated structures called learning centres ask their children with severe needs to simply leave after the RTE mandatory fourteen years. In these segregated setups children with hard disabilities are not taught how to read and write and do practically nothing throughout their so called school life. As if waiting for the RTE lease of school life to run out.
They are victims of the primary mistake of special education. All disabilities are not intellectual. In fact very few of them are. Severity of need is not directly proportional to lack of cognition. Most often than not, the need however severe simply requires planning, practice and perseverance amongst peers. This need is never met. And by never I mean never.
This mistake is sealed the moment the ‘special needs’ label sticks on the child And it sticks like destiny. Most labelled children are not exposed to formal education, not really. So we will never know how many bright intact minds are lost to the mainstream.
Maybe it is because of this more younger parents are opting to send their children to mainstream schools with parent paid support facilitators commonly called shadow teachers. I was one such parent who sat with her child for five years, so far an unbroken record. Neel is now in class 9 with a support facilitator and I can divide my school years (don’t know how else to define it since there are no definitions for creatures like me) into three phases.
1) The ignoramus phase. My early years as Neel’s facilitator was full of gratitude to the school for including my disabled child. I did not know ( and no one told me) that the law made inclusion mandatory. Inclusion was not a favour but a right.
2) The surrender phase. Though Neel went to school with parent paid support I was convinced that inclusion could only happen by eliciting cooperation from the school by trusting their judgements, however counter-intuitive they might be. In retrospect Neel suffered the most in these years.
3) The aware phase. I know the law, I know my rights. I still do not want to get into an adversarial stance with the school but I know that inclusion at least as a short term goal can only happen from outside. By outside I mean sponsored support facilitators whose real task is to create a sensitised environment around the child. It seems the only feasible way because it is clear that disability demonisation is too entrenched in the rigid social structures through which schools operate for real inclusion to happen. The irony doesn’t end here. Education for the disabled is free and compulsory till the age of eighteen, making parent paid shadow teachers technically illegal. Counter-ironically, it’s a law very few educationists and very few parents know about.
This is the point where I stand right now. I look backward and forward and see no antecedents and precedents that I know of but only a host of questions that I must address. The first and foremost of the FAQs is:
1) Why Inclusion? Am I deranged or delusional, possibly both? Am I pretending that my child is normal?
My answer to this has been written before, for a change it has a precedent, thank god!
Three models of disability have evolved over time.
A). The charity model looks at the sorry state of the disabled and instead of contempt treats the disabled with mercy. Food, clothes and a place to live out your wretched life in a controlled environment.
Many parents and activists revolted against this model and evolved to the second model.
B) The medical model. I shall cure my child come what may. I will make my child normal. I shall ban vaccines, sign up for every therapy, inject stem cells into the spine and leave no medical stone unturned. I shall hammer my child into shape. This revolution probably just a couple of decades old followed the spurting autism statistics. The disability community became more visible. It could now be seen and heard. This is how things are at present though a small percentage of this group is organically separating into a third model.
C) The social model. Still in its incipient stage the social model does not consider disability in people the problem. It considers disability in society the problem. In the survival of the fittest dynamics of the education ecosystem there is no place for neurodiversity. That is the problem. Schools are psycho-socio-economically designed to expel what it considers weak. Remove the hostility in this ecosystem and you give neurodiversity half a chance to bloom. The focus in the social model is not to change the child but the environment around the child.This is the model I advocate. It’s the toughest, most radical almost extreme choice to ensure dignity for the most vulnerable. Especially in a country as large as ours where even the able-bodied are eliminated on a statistical basis. But it has to be done. Someone has to start somewhere.
2) Isn’t inclusive education a myth? Schools are not really inclusive so isn’t it a mistake to put your child here?
True. Inclusion in schools does not exist, at least not for children with hard disabilities. When exclusion can occur with a word, a tone or a gesture what is going by as inclusive education is a far cry from what it should be. I visualise this as a dining hall where mainstream children eat and children with special needs are allowed to watch from a distance but not eat at the same table.
Still there is no alternative. This is the best natural stimulus our children can get or get close to. Even though they are crumbs. The hungry have to make do with whatever they can lay their hands on. The effort must be for more and more people to keep sensitising the environment as they go along and not giving up the struggle for inclusive education. Giving up would be the real mistake.
3) Don’t special children belong in special schools?
Sure. And natives belong in reservations. And African Americans belong in Africa, and women in kitchens.
I always maintain that if Neel didn’t go to school he wouldn’t be where he is today. He would be weaving baskets somewhere in a special school owned by people getting national awards for Inclusion. He wouldn’t be cycling with his classmates zig zagging without training wheels or supports in the Sports Day presentation. Yes it took a lot of planning and practice to reach there but he did. Like a boss, pleased as punch.
3) Aren’t you torturing your child? Aren’t schools nothing but outdated marks obsessed race courses?
True that. Quite literally children are prepared for board exams like race horses trained for the Derby. High faluting differential learning and induction workshops do not prevent subconscious indoctrinations from its perpetration by teachers to the next generation. With complete deference to a few good teachers whose heroism stand out like beacons in darkness, most teaching is lazy teaching, and lazy teaching damages children. Frontal teaching before desk loads of children picks out the children who require the least amount of teaching and projects them as stars. This teachers do by subtly rewarding the child with teacher approbation and attention. Children then compete for teacher approbation and the child who requires the least amount of teaching wins. The school basks in the reflected glory of achievements of this child, who needs teaching the least. In this gladiatorial approach to teaching there is no sympathy for the student who genuinely needs the teacher’s attention.
And that boys and girls is how and why the special needs industry got created . Children who need teacher attention should go somewhere else, is the unsaid rule. Schools are for winners. It is not a coincidence that disability labelling of children and the subsequent birth of the special needs industry started around the time demoting school children became illegal.
Why then am I throwing my child into this harsh and unfriendly ecosystem?
Because inclusion is the magic nutrient children with special needs need to develop. Immersion in age appropriate environments provides the natural stimulus necessary to maintain neuro plasticity. Continuous peer modelling gradually converts static learning into dynamic learning.
Because children with special needs like the rest of the human species are social beings. In all cultures children grow and develop within the community. A child with disability is no different, needing the support of her community far more than the teacher independent star pupil.
4. Are children with behavioural issues really ready for ‘normal’ school?
Children are ready. ‘Normal’ schools aren’t. Parents are turned away from admission interviews because the child keeps running to the swimming pool or flaps hands or has meltdowns. Parents are asked to come back when the child has pencil grip, can walk in a straight line and has sitting behaviour. However if these children were admitted they would gradually and eventually grow out of their behaviours anyway. Just like other children get over separation anxiety and nail biting.
The real issue here is the active demonisation of disability and the inability to accept difference. Sounds like a behavioural issue? It is. As a rule the harder the disability the harder the demonisation.
Schools are in ‘special need’ for a constant trickle down dialogue to contest their day to day hour by hour deep rooted prejudices.
Maybe there’s something to learn from a child who walks in the classroom sideways? Or one who paints instead of speaks?
Maybe we need to stop looking at them as ROI, return on investment, and see them as children? Isn’t that what schools are supposed to do?
5) How does inclusion benefit schools?
The UN found the inclusive education model in Italy as the best practice not in inclusive education but in education. And this is because inclusion is the hallmark of a good education and a good upbringing in a futuristic twenty first century sense.
My observation is the best teachers come prepared for class. They do their homework even though it is very easy not to. They come prepared because they take their job seriously. And because they take their job seriously every child in their class matters. These teachers have no challenges with inclusion. Inclusion comes easily to them. Problem is these teachers are rare, few and far between. Most teachers, whatever the school pedagogy or ideology, are creators of star pupils and would be better off as trainers at the race course. Ever wondered why with our near perfect academic percentages we as a people are not really renowned as great pioneers or thinkers or innovators? It’s not that our children aren’t bright, they are. Very bright. It’s just that they have never been ignited. To be ignited would require another spark, and like I said good teachers are few and far between. And lest I forget to repeat myself all good teachers are naturally and instinctively inclusive. Inclusion is the litmus test for good teaching.
6. Will inclusion ever happen?
I don’t know. India has a thriving disability sector but no disability movement to speak of. I’ve often wondered why. The absence of inclusion is most pronounced in education. Sometimes I think it’s because of the subliminal human fear of being summoned to the Principal’s office. Going against the teacher or the Principal and fear of teacher disapproval is a deep rooted anxiety psychosis ingrained when we were children. Teachers too have this psychosis but use it to their advantage when they become teachers.
And also the Stockholm syndrome. Handing over your child to the school is giving up your most supposedly precious possession to the vagaries of the ‘system.’ We are grateful for whatever mercies dispensed and are willing to pay whatever ransom required to a school holding our child hostage for eight hours of the day.
There may be other reasons.
The parent is one and the school is many.
The school is the system. No one goes against the system. The system starts at the gate where you leave your child. And you’ll never really know what happens behind the gate. So you lull yourself with the false sense of security that this is the best place your child can ever be. And you believe that no one goes against the system has nothing to do with it. And you stand outside the gate and the tomato can assembly line machinery spits out a can with a percentage on it. And you are happy with it. Or not happy with it. But no one goes against the system. The maximum elicited protest is taking your child out of the system but-no one goes against the system.
But I have been behind the gates and I have seen how the tomato can assembly line machinery works. And I know how regressive it is. It needs a serious upgrade to inclusive. Not for the disabled but for everyone’s sake.
For the paradigm shift to take place the psychoses operating in social consciousness needs to be introspected. Till that happens, laws will not be implemented.