Esha Meher in
conversation with Mrs Minu Budhia : psychotheraphist, counsellor and a special
mother.
There had been a period where I considered myself the epitome of misfortune. Death seemed to laugh ever so mockingly, at my vain plans to embrace it. Every time, I crossed a tall building, I counted its floors, to count as to many floors I’d have to climb to plan a fatal jump. Then, there came a moment, where I learnt, that running away is never an answer. Its an option that a lot of people are not given, not because they are not privileged enough but because they are trusted, trusted by destiny to be able to handle the challenges that life tosses their way. And soon thereafter, I learnt to live.
Tell
us about your childhood.
I was born into
a large Marwari family in the Tinsukia district of Assam. Having been always
recognised as a bright and extroverted student, people knew me for my go-getter
spirit. An active sportsperson who proudly displayed trophies in every sport
socially possible at that time for a young girl. Being policed by parents or
doted by elders, was not a regular occurrence in my life, as morning turned to day
and then to dusk, I always found myself busy in the company of my cousins who
ran across the place, sprinkling cheer and happiness into every bit of what we
call life.
While I nursed
dreams of taking up medical science as a profession, logistical difficulties
stood my way. No school in Assam would admit women to the Science stream, let
alone specialised degrees. Humanities
was an obvious choice and soon followed the typical Indian life of marriage at
18. In fact I finished my graduation a few years after my marriage from Loreto
College in Kolkata.
When
was your first brush with the term “special needs?”
Terminologically
speaking, back in our days, I had almost no idea what special needs stood for.
In my maternal town at Tinsukia, there used to be a differently abled young
girl. I remember seeing her around, wearing bright clothes and having cluttered
hair. I didn’t exactly know what her issue was, but everyone dismissively said,
“pagal hai”.
While I remained
a stranger to medically and socially tailored terms for a very long time, the
understanding that certain people were different in terms of their social needs
and expressions probably took root in my mind from this time.
For the free spirited 18 year old, how did you deal
with marriage and the responsibilities it brought along?
As it is often
said, sayings weren’t coined in a day. We’ve heard them say, once a rebel, always
a rebel! And it could not have gotten any real for me as a young bride of 18,
often spotting myself at cross roads with my in-laws, standing up for what I
felt was unfair. My husband, Sanjay, has always been a pillar of support. In my
quest of challenging archaic traditions, and speaking out aloud when I thought
I wouldn’t comply, I had him by my side, espousing my cause before family at
first, then society and at all stages of life, thereafter.
When motherhood
finally arrived, I was too overwhelmed with everything around me, to feel or
understand the difference, to be honest… and my naivette and relative immaturity
due to my age wasn’t helping as well. Policed by rituals and guided by
restrictions, there were too many excited family members who stepped in to
offer advice and give a list of dos and donts. Amidst thisrestricted schedule, my
first child made her way into the world and our hearts, we named her, Preeyam.
Did motherhood
feel any different raising your younger child?
Certainly did.
To be very honest, the first time, I even experienced the bond between a mother
and an unborn child, was when I conceived my younger daughter, Prachi.
Like most Indian
families, the first child is always the recipient of love and attention from
every nook and cranny of the extended circle. Our family was no exception.Grandparents, uncles,
aunts and cousins queued up to dote on Preeyam, I was left overwhelmed. As
Preeyam grew up, my life progressed at a rapid speed, it didn’t take me long to
realise that she had taken to me when it came to being active and quick on her
toes and little arms. She was the naughty multi tasker, who had a special love
for breaking perfume bottles!
With Prachi,
things were different. I was a much experienced and matured woman with this
passage of time. She came into our lives 8 years after Preeyam was born. In the
years that had passed in the middle, I had miscarried a few times and had
prayed fervently to god for a healthy child. My prayers had finally been
answered.
I doted on
Prachi and literally carried her in my arms all the time, till she reached the
age of two. Her medical reports were perfect as the growth chart recorded that
she was growing just fine. We put her in the best kindergarden there was, in
the city, and that’s where it all started. Complaints started pouring in, every
single day. Probably an interesting illustration of how even the most
prestigious of pre schools, can be completely ignorant to symptoms of special
needs subjecting the young children to anger, mockery and ridicule in their own
ways. “Prachi is the perpetual talk of the staffroom, she is so naughty”
Soon, instances
of Prachi’s “naughtiness” took severe turns. My husband and elder daughter
would be apprehensive of taking her to social gatherings or five star
restaurants, as she would show blatant disregard to any form of decorum,
running around and being restless within a matter of seconds. But I was
adamant, I refused to acknowledge that she might be in need of a clinical
diagnosis. I insisted that she be treated normally and everyone be indifferent
to the obvious difference that Prachi brought along. But this could not have
gone along for long. We finally decided to take her to Bangalore for a harmless
diagnosis to a presumably tiny issue. It was there in that city, that our
daughter was diagnosed with Attention Deficiency Hyperactivity Disorder (ADHD)
and Low IQ. The terms were told to me, but the meaningless words bounced off my
ears. I was far from ready. Far from the reality of being the mother of a
special child.
Could
you talk about what happened next?
Oh! What
followed that was a long long walk down a path that seemed to never reach its
destination. When the news was finally broken to me, my world crashed. I took
the blame on myself. As if, bearing a special child was a fault of mine. I
could have been a better mother, done something, changed something to alter the
course of things. Within a span of a few days, I sunk into the depths of
depression and was completely suicidal. The family
panicked. Their entire attention turned to me. People sympathised. Some
reminded me of the existence of god and his illusions and some sympathised,
saying the most over used phrase in the world, “it shall be all right”. People
were scared to breach the topic before me, and life at Budhia house seemed all
the more tense, as everyone grew further scared to pronounce out loud, what was
evident and had now been confirmed by medical sources.
From
being clinically depressed and suicidal to standing up-to reality, and then conceiving
an intitiative like Caring Minds… What was that journey like?
The firat half
of the struggle was real as I had lost sight of things. We travelled
extensively with Prachi in search of treatment. One day we were in Bangalore,
and the next day, I wanted to fly to Philadelphia for better doctors and better
treatment. For ten long years of our lives, we were almost based out of
Bangalore. We had an apartment there and for every vacation that Preeyam had in
school, they invariably knew where she would have to head to. I even started
insisting that Preeyam take the SAT exams so that the three of us (Preeyam,
Prachi and I) could relocate to America, where Prachi could have perpetual
access to better treatment. And behind the curtains, I was still a broken
woman. I could not let my anxiety affect my husband. Sanjay was being the most
supportive entity that one could have ever hoped for, if I poured my insecurities
onto him, it would jeopardise his career. It was the same phase where he was
heading our family business and had just being elected the Chairman of the
Indian Chamber of Commerce. I could not have dragged him down. I made sure I
was a good wife, an amiable partner. Attending social gatherings and greeting
people, but almost everyday as the sun hit the horizon, I would be haunted by
my luck and my reality. I would curse my stars and cry on the phone with my
mother.
Things took a
steep turn, when I realised I could not escape. I was Prachi’s mother. If I
could not accept her the way she was, it would be foolhardy to expect the world
to. I had to train myself to not only be a good mother to her but also be that
entity in her life who could guide her along the way. My unnurtured love for
medical science was brought to the forefront as I pursued a degree in
counselling from the United States, just so that I could understand her
situation better. And it was this degree that changed my life. I subsequently
trained myself in Cognitive Behaviour Theraphy from London and started actively
practising in Calcutta.
The path to
practice in established hospitals and then finally conceiving the idea of
Caring Minds, an instituion that would render all mental health services under
one roof, was not without hinderaces and challenges. But that’s another story
in itself! Emotions sometimes pull us down. Instead of being the light in our
lives, it blinds us with intensity, it is at phases like this that we need to lay it to rest.
Diagnosing a situation objectively. And for that, there is no shame in
objectively doing what is healthy. And sometimes, actively distancing oneself
from a loved one is the healthy thing to do.
Besides
being academically enriching, your years of pursuing these degrees made a
lasting impression on your life. How did that come about?
These years
redefined my relationship with my own self and that’s how it changed my life.
For the longest time after Prachi was born, I felt like time was lead bound, it
never moved. All I knew and heard and saw was the fact that my child would
never grow.
It was only
after a point, that I remembered that I had a life too. I was a woman who lived
before she became a mother, and I owed something to her. I had to live. For
myself and for Prachi. Strength for me was not an option that I could choose or
forego. I had to appreciate the fact that I was still living and I wanted to
live on. Live for Prachi, live for my family and live for myself. Amidst the
shouts and wails of the wife, mother and other social roles that I had, I had
completely suffocated the woman in me. I realised that the world worked in
strange ways. The weaker you are, the more people would pull you down. Whatever
your reality might be, the only way was to embrace it and wear it like an
armour. I decided to start stepping out of the house without Prachi and started
living for myself. I employed trained staff to be around my child albeit with
supervision. And suddenly my days got lighter and easier.
One thing I
could not help but notice was how my emotions were pulling us down instead of
helping my daughter. The emotional involvement that I had with her was intense
and the slightest movement in her would send me in a complete state of panic. I
learnt to finally let go, for both our sakes.
But having said
that, I never stopped training Prachi. While she was always accompanied by a
professional set of governesses who were trained to handle her, I was still her
first coach for everything. Every sport, be it swimming, badminton, squash or
cycling, I made sure, I mentored her in each of these. But this continued, only
till the time she turned thirteen. Another storm hit us thereafter…
**pauses**
When Prachi was thirteen, she was diagnosed
with Bipolarity. Her mood changed every minute and she had no control over the
extremities of her emotions. But this time, for me, things were different.
I diagnosed her condition much before the
doctors did. As luck would have it, when she started showing the earliest signs
of Bipolarity, I was reading a book called, “Raising a Moody Child”, and I
couldn’t help noticing that my life beyond the pages bore an eerie similarity
to what was being written about, in the book. We had written to her doctors in
the States who were still trying to figure out the reasons behind her sudden
mood swings. It was me who suggested, that she be tested for Bipolarity and
soon enough the results confirmed my diagnosis.
Bipolar Disorder is not a life threatening
terminal illness, it is rather commonplace affecting hundreds of people every
day. It does have medication but is by and large a mood disorder where a peson
can feel extremes of emotions within a short span of time. It aggravates with
hunger, fatigue etc. It does have medication but no complete cure. But Prachi’s
case was different. Things would be particularly difficult because she already
suffered from ADHD. In the case of an advent of yet another mood disorder, she
would not be able to handle it, as she never understood the need to manage it
anyway.
ADHD is a condition where an individual is
perpetually in a state of hyperactivity, and that’s what Prachi faced. The
viable mode of treatment was to engage her in physically taxing activities,
which would tire her down. But with the onset of Bipolarity, that could not
happen anymore. On some days, she would play Badminton with great rigour and
enthusiasm, the next day, she would refuse to touch the racket. The battle was
on, for me. Just that, this time, I was not going to give up.
Would
it be fair to say that these conditions are untreatable?
What do you do when you get diagnosed with
something like Asthma or Migraine? There is no permanent solution right? When
the attack appears, you medicate yourself. Then it subsides on its own. The situation
though not identical, is somewhat similar. There are medications, which are administered when the symptoms get severe and what is of particular significance
is the avoidance of known aggravators. As long as a controlled, predictable
lifestyle is maintained, life goes on. And its perfectly fine. On the onset of
a rough attack, there are medications which improve things.
Can
you share the story of Caring Minds?
When I had started my practice as a
psychotheraphist and counsellor at Belle Vue Clinic and St Xaviers College, I
realised that the city lacked the infrastructure for mental healthcare. All I
was mostly doing, was referring people to different places. Place X for speech
theraphy, place Y for psychometric testing and so on. I realised that the need
of the hour was to have a place which would provide all services related to
mental healthcare under one roof. And that is when we conceived the idea of Caring
Minds. My husband, Sanjay, being the supportive entity that he is, immediately
arranged for a proposed roadmap, probable site and then began conducing
interviews for staff.
And there it was. We were shocked to find
out, that the area where the proposed clinic would be had their residents
protesting as they “had objections to mad people coming here everyday”. They
had somehow gone to Court and obtained a stay order. I was devastated. All
preparations were done. Staff had been hired and there it was. Everything
stalled. Getting into long drawn litigation was not something I wanted. I had a
mission to achieve and Caring Minds had to start operating. My elder daughter
Preeyam had just quit her job as a banker in London. I called Pree and told
her, that I needed her back in the city and there she was, with her neck deep
in papers and ideas for Caring Minds, in no time. We decided to start the
initiative from a single room in our house itself. That would be the Caring
Minds office. We made way for a desk, chair and other furniture befitting of
the place and that’s where we first set up shop!
In a matter of some time, we realised that
the Court Case would not see its end and I asked Sanjay, if we could look for a
new property. We soon obtained the land at Sarat Bose Road, where our Caring
Minds Clinic proudly stands today not lacking in space, facilities or any
amenity that one could seek therein.
Caring
Minds now has yet another little faction, called I Can Flyy. How did that come
about?
I Can Flyy is a vocational training
institute for Special Needs Young Adults. The individuals here are of the age
15 to 30 and they are trained in Art & Craft, Bakery Skills, Data Entry and
other ancillary life skills that can give them a stable livelihood in future. The
Craft items made by them are sold by pre order at the I Can Flyy Craft Factory
and the food and bakery items are sold in the café as well as the Food Factory.
The latest addition to the institute is Café I Can Flyy, which is Kolkata’s
first café to be run entirely by and for the interests of Special Needs
Individuals. We often bit and request corporate houses who outsource their data
entry jobs to outsource it to us at I Can Flyy.
As I raised, Prachi, the thoughts about her
future continued to haunt me. What was she to do when she grows up. Her life
could not be at the behest of someone else the whole time. That is when
thoughts about her and hundreds of other special needs individuals started
circling my mind. There had to be a way to socially and economically empower
them, as to also increase their sense of self worth in society. A life with
dignity is a fundamental right hat we deserve on the basis of our human birth
and nothing else, I Can Flyy is an initiative which reaffirms the same, to prove
that Special Needs Individuals are just as abled as any other person, just in a
different way. They need our love, faith and support, not a sense of empty
sympathy.
In
your life as a mother of a special needs individual and the founder director of
I Can Flyy, how and where do you draw the fine line between empathy and
professionalism?
Its difficult,
true. But not impossible to achieve. While empathy is an important emotion,
using it too much can hinder goals especially when it involves making a change
in a diverse society as ours. As the Director of I Can Flyy, I do meet parents
quite often, and while I do understand their pains, sometimes I need to make
decisions which may not be pleasing to them.
I Can Flyy is a
vocational training school, we cannot make place for individuals with severe
disabilities or restricted motor functions. While we do make a few exceptions,
the ratio is quite strict, for every 5 functioning special needs individuals,
there can be 1 severe case. If I make way for almost every parent who knocks on
our door, I shall soon be running a special school, which we are not. There are
certain criteria that an individual has to meet to be here, and we cant
compromise on those very often.
In your interaction with society first as a mother,
and then as a professional, how have you felt their
reception/acceptance/perception of Special Needs Individuals to be?
Ignorant.
That’s the
answer. The lack of awareness and then sensitivity about Special Needs in
today’s day and age is appalling. But then again its varied across the
different layers of society. The Middle Class and the Upper Middle Class
believe that the solution lies in denial. The other day, I took Prachi to the
Consulate for visa related formalities and there was a well dressed girl, who
stared at her persistently. After a point of time, I walked up to her and told
her, that she was a Special Child and please don’t stare like that. I believe
that the few of us who know must not avoid sharing and educating people,
wherever we can, in whatever way, we can. However, in stark contrast lies a
memory of mine. Once I was at a street vegetable vendors’ and I noticed that
she had a special child. The kid was right there, in the marketplace, doing
whatever little work that he could do. That was the best illustration of proud
acceptance that I had seen. The mother hadn't hidden the child fro the world or
refused public association with him. She knew he was different and it was a
part of life. She understood, that he may not be able to perform every task in
the manner others do. But that doesn’t make him disabled or uncommon. He still
could and did work, just in a different way and a different set of work.
Any regrets in life? If you could turn back time and
do things differently, what would you change?
No regrets. None
at all.
I am a blessed
individual. I have a supportive husband and family. I have two loving
daughters. Preeyam is a bright young woman handling the family business, an
able co founder for I Can Flyy and Heading New Initiatives for Caring Minds. We
have the best mother daughter relationship ever! There is literally no taboo
topic between us. And Prachi is my
darling. She is my strength and inspiration. She helped me rediscover myself
and appreciate life like never before. I think of moments when I had cursed my
luck and often wonder how wrong I was. I know of a gentleman, who had two sons,
one of them passed away of a terminal illness and the other child is autistic. I
see him live life, I see him smile, walk and fold his hands in prayer before
the same god, whose existence I once doubted. It is all a matter
of perspective. Its all out there before us. It ultimately comes down to what
we choose to see.
Your parting words to us.
Society is an
evolving being and its progressing each day. Its made up of nothing, but a
bunch of individuals like you and me. If we start by educating ourselves in the
language of peace, love and compassion, it’s the single most important step,
taken in the direction of evolution or advancement.
In so far as
Special Needs is concerned, the Indian society still lags behind. There is no
awareness on a national scale and no clear idea as to what is the way ahead. In
countries like the United States, Special Needs is a much more integrated
concept. The schooling system there is starkly different. Kids mostly go to the
school in their neighbourhood and the same school is open to all children. Once
a child grows up seeing a special needs individual in their class itself,
he/she is much more understanding of their needs and ways. While in India,
nothing legally can stop a Special Needs Child from going to a regular school,
such a thing is never heard of. Inclusive education is almost a myth and that
is what needs to change.
And
as for parents and mothers of special children, I would just have one thing to
say. God often chooses the strongest and the best of us as a parent to a
special child, because we have it in us to accept God’s purest creation the way
it is, and make society a different place. The onus on us is always to lead the
way. Hence, the first step ever is to value our own selves, and strengthen our
wills, for giving up or giving way for another, is not an option for us.
