Idiopathic Epilepsy. Guest blog by inclusion advocate Shalinee


Adversity is a good teacher, it teaches you how to survive sometimes through phases and sometimes to sail through life. The toughest lesson it teaches you is to build your faith in the face of uncertainty. Plunging, not knowing if you’ll hit the ground…walking not knowing where the road’s headed, jumping into waters with little swimming skills.

Faith my dear is all you’re left with and all you’ll ever have.

Our introduction to Faith began 5 years ago, our elder son (now 14 years) was hit by seizures and even before we could blink our eyes, and our life went topsy- turvy. The sounds of the regular ho hum of a family transformed into constant Patient-Doc chats ! No matter how hard we tried to grab at our old life, we watched it slip through our fingers little by little and all we could do was watch the colours change… teary eyed. We did the expected- met with all the neurologists from Delhi/NCR, few overseas and wrote hundred emails to some others….leading to the same conclusion “idiopathic epilepsy”. We’ve watched our fun loving energetic son go through innumerable eegs, radioactive tests, feel hundreds of pricks and experience the horrible ICU several times. In a matter of few months Aadi was on heavy anti epileptic drugs, each new neurologist came up with classification and categorizations of syndromes we did not even know existed. They were very responsible you know, clinical, blunt, no promises, few words and as usual no bulls eye answers.

It’s been 5 years we still don’t know what causes our healthy intelligent regular kid to seize multiple times in a month…strangely neither do the doctors.

He’s changed a lot , confidence has taken a beating, tags and labels are on his face, getting pushed around is common and yet Faith keeps him and us afloat.

Epilepsy is that creepy horrible monster that comes crouching un informed, suddenly and viciously …..you can barely ever prepare for a seizure! As a result Aadi lost most of his friends, lost a year of school, wore a seizure helmet (in a country like India where even your name is judged), fought through slurring speech as a result of medicines, put on 30 kgs and braved innumerable falls leading to stitches ……day in and out. People still don’t know how to be around him, they are cautious while kids are judgmental and bullying. It’s easy for anybody to say “ it happens deal with it”. However the killing bit for any parent is to live and watch your child suffer. We’re always judged for being his backbone, but who will if we won’t. We live in an area considered one of the best, however none of the families possibly ever sensitized their kids on epilepsy they only seem to have forewarned their kids about him.

Epilepsy can hit any normal person at any given age for various reasons. It does not show on the face, however it can hamper intelligence and growth, and on the other hand if controlled it does not effect the person much. The place of seizure origination is what assists doctors to prescribe drugs and that is also why symptoms occur. In Aadi’s case temporal lobe is where seizures begin which cause – short term memory, difficulty in logic (math and science), fatigue, short attention span, fidgetiness to name a few. The drugs too add to this and make things much worse, they can cause- weight gain, slurry speech, blurred vision, drowsiness, depression, anxiety, low focus, metabolic problems and a whole lot more. When as a family you’re dealing with all of this, all you’re seeking desperately is acceptance & inclusion.

The only place where this need can be met is your community and through a school.

We realized schools are neither informed nor equipped to manage kids like Aadi and others that have different needs. There is little or no curriculum and you’re forever compromising and finding the mid way to balance the act and not to rock the boat. In the beginning it was a tussle seeking exemptions of various kinds as he looked just like a regular kid, until few seizures were on campus and it was established. We’ve however been blessed that the school agreed to evolve and grow with us, today that’s his biggest comfort zone. He’s been exempted from learning main subjects and is taught few in class, and few 1×1 sessions are conducted for other subjects. The school was willing to make a difference in Aadi’s life they are active participators in his growth.

I would like to reach out to YOU the reader, and urge you to reach out to yours help them raise their sensitivity and awareness. When you’re going about life, pause and be careful who you chance upon, be tolerant and patient disabilities are not crowns that set you apart for quick identification…it takes time to face. Educate your children and elders on the true meaning of inclusion and acceptance. If you’re an educator, professor, teacher better still – be the voice of evolution, bring about a change in schools, be the one to steer thought leadership in a direction of acceptance. We’ve all read and even experienced any change needs to be brought by people, an then made a habit to become a lifestyle. It’s not about a group that is directly affected it’s about self respect and the right to BE….for any individual. Ostracism, rejection, seclusion, name calling, bullying will continue unless love-acceptance-equality are taught at homes to be seen in the society.

The world needs to be a better place, our homes, communities, streets, schools must be welcoming comforting and accepting. How can anybody grow and evolve under immense pressure and scrutiny… ……..GROWTH REQUIRES NURTURING.

Children with needs don’t seek sympathy; they need acceptance of who they are and how they are. Unless we as a nation come together and bring a change, humanity at some level will always fail.

And if am stating the obvious, if it sounds like a broken record….why isn’t it this change a reality yet !

Shalinee

Shalinee is a mother of two boys and lives with her husband in Faridabad. She’s a part time professional and a fulltime homemaker. Their older son has seizures since 5 years, he’s now 14. She has a strong desire to reach out to parents similarly challenged with adversity, and build a likeminded community. You can reach Shalinee at – murishwars@gmail.com

Nationhood, disabled


Spaz, retard, aut, handicapped, special, disabled, differently abled. All these words have their etymological roots in the physical and medical condition. All of them veer delicately or indelicately away from the one definition that is a truer more faithful description.

Socially disabled.

The time this definition and its synonyms get wide acceptance will be the time we, as a people would have learnt to look at ourselves in the mirror. It has gone unnoticed so far that the disabled have an innate capacity to expose rot in society. It’s their superpower. In schools they are the dumping grounds of toxic wastes teachers bring from their homes and value systems. At homes they reflect the crass materialism of family dynamics that revolve around the value and usefulness of the family member. In gender relations the mirror turns to patriarchy in its monstrous forms, hardly if ever exposed in mainstream life.

And now this new government diktat on ‘training’ the disabled in movie halls. The mirror turns, exposing the deep pathology of a political ideology rooted in totalitarianism.

This directive is not intentionally targeting the disabled. The disabled are but minuscule factors almost non-existent amongst the marginalised vulnerable. Most parents in the disabled community have never even taken their child to a movie hall. Ever.

So what is the reason for this directive?

The real intention is to ‘train’ and subsume the margins. It is in the fringes that the centripetal forces of resistance manifest. So make sure that no one escapes the catch all net of totalitarianism.

Seal the borders.

Borders that showed up while establishing totalitarianism through an enforced sense of nationhood. For almost all of humanity patriotism is the individual’s allegiance to a loftier nobler ideal. The pitch and intensity sometimes becomes more than religious fervour. Lack of patriotism can become a crime, almost like manslaughter. Even the most indifferent will never disrespect the national anthem. If not for patriotism for fear of the lynch mob.

The national anthem is sacrosanct.

For a totalitarian regime, most importantly it homogenised the masses.

By playing the national anthem in movie halls, it ensured that every single Indian (because every single Indian goes to the movies at some point) was arrested at her most open, relaxed and vulnerable state and forced to pay homage to totalitarianism.

There was only one catch that escaped the catch all. The one fraction that didn’t add up to the totalitarian count.

The disabled.

Therefore the training instructions for the disabled in movie halls. If you can’t walk, crawl. If you can’t stand, pay attention. It’s a very clear message. No one escapes the totalitarian net.

And this is how a government insults the intelligence of an entire nation. Just because it can.

And in so doing, it disrespects nationhood. It disrespects the national anthem, the essence of nationhood.

In protest of this disrespect to the national anthem, I have decided to forego the first scenes of every movie I watch in a movie hall. If caught unawares I shall walk out of the hall before the anthem starts playing, and wait where I cannot hear the anthem play. In tow I shall take out my entire neurotypical family and a disabled son, who is capable of standing perfectly in attention, but who shall protest anyhow for all his people, who can’t.

We will not bow down before the altar of totalitarianism before we enter the sacred portals of art.

We do this to show respect for our country.

Happy Republic Day!

 

 

 

 

 

 

 

Politics of survival in the inclusive education ecosystem


 

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.