If something comes to life in others
because of you,

Then you have made an approachto immortality
Norman Cousins

vlrksek ln~xe; Arelksek T;ksfrj~ xe; Ae`R;ksekZe`ra xe; AAÅ¡ ”kkfUr% ”kkfUr% ”kkfUr% AA

vOoy vYykg uwj mikb;kdqnjr ds lc cans A,d uwj rs lc tx mift;kdkSu Hkys dks eans AA

asatomā sadgamaya

Awwal Allah Noor Upaya

tamasomā jyotir gamaya

Kudrat Ke Sabh Bandey

mrityormāamritam gamaya

Ek Noor Te Sabh Jag Upjeya

Oṁ śhānti śhānti śhāntiḥKaun Bhale Kau Mandey

SSNI/AADI
Early Years under the leadership of Mrs. Mita Nundy
Persons with childhood and life-long disabilities had no access to the outside
world in India in the early 70s. For many of us who now see people withdisabilities, supported by legislations favoring their rights, fighting for equal
opportunities for admission in regular schools, universities, jobs, entertainment
and access to other routine services, it might be difficult to imagine how it wasback then. Things have changed.
Looking closely at the most challenging
condition within the area of disability in which multiple functions are impacted, it
has been the pioneering efforts of a young mother in the early 70s that has been theforce behind the change. Mithu Alur moved beyond her challenging personal
experience with her daughter Malini, to establish the first programe in India forchildren with neurological disabilities. Motivating, educating, inspiring,
challenging, coaxing—even coercing --family, close friends, government officials,
corporate executives and doctors among others, Mrs. Alur succeeded inestablishing the first organization in Bombay called The Spastics Society of India(now called ADAPT: Able Disabled All People Together).
But that was not enough…
Aware of the number of children andfamilies still untouched by the minimal
support they so needed, Dr. Alur focusedon expanding services outside Bombay.
Her constant challenging question to likeminded family members and friends, ’noservices in the capital!?’, resulted in thefirst special school opening in 1978. The
Delhi branch was called The Spastics
Society of Northern India (now AADI:
Action for Ability Development andInclusion). The organization was
spearheaded by Dr. Alur’s sister Mita
(Mrs. Mita Nundy) and her close friend
Minu (Divya Jalan) both of whomalready had a keen interest in and someexperience of working with children withdisadvantages and disabilities. Anita

1Shourie, joined soon after, bringing in her invaluable experience as the mother of
Adit.
Mita was an extremely inspiring leader. Dr. Mathew Varghese, Former Director,
St. Stephen’s Hospital, remembers –“I forget the day and the year but around 1989 or 1990 as a young orthopedic
surgeon I was invited to a meeting at AADI, then Spastics Society. There werechildren, parents, counsellors,
therapists and other board
members of Spastics society. I
was late and slipped in to themeeting quietly. The meeting
was in the open air of Spastics
society building enclosure. I was
preparing to listen to someboring speeches and perhaps
some life story of rehabilitationof a child with cerebral palsy.
Thensomeone,introduced
Mitadi and she started speaking.
The next 15 minutes or so I sat
spellbound. She was so erudite,so clear in concepts and the way
she put across issues were soelectrifying that I was literally
tingling with this exposure to a
new perspective on children
with cerebral palsy. I had a lumpin my throat. She had moved me
beyond measure. I was too timid
then to go up to her andcompliment her on her speech. That speech by Mita remains, till today, one of themost moving speeches I have ever heard. I hardly ever interacted with her except
later in some of the board meetings at SSNI/AADI. She had changed my approach
to children with cerebral palsy forever. To see them as human beings beyond theclinical cases to be treated medically or surgically.”
Mita’s compassion and constant concern for those further disadvantaged byconditions like urban poverty and rural living resulted in the initiation of the Rural

2

project in Dayalpur. Soon after the urban services were started. The rural
expansion compelled SSNI/AADI to include children with all disabilities, leading
it to innovate suitable strategies to work with a more diverse group. Mita and otherfounder members always responded to new situations as and when they occurred.
It was during the late 80s, when SSNI/AADI used this rural experience to rethink and bring greater relevance to its programs via the model of community
based services. It was this experience of working with all disabilities that helped
SSNI/AADI to have a cross disability focus in its services as well as contributing
in fora like the Planning Commission, UN Committees and other Government
committees on policy & legislation.

Mita’s sensitivity along with her extremely sharp and analytical thinking ability
resulted in many innovative programs in SSNI/AADI. She took bold but muchneeded difficult decisions. Moved by the desperation of waitlisted parents andrealizing that India did not have the capacity to start special schools in the numbersthat were needed; she started a family training program. At a time when large
numbers of trained physiotherapists and occupational therapists in India weregoing away to the Middle East and other countries creating a vacuum, she
proposed a one year post graduate training program - Basic Developmental
Therapy, as part of the School of Rehabilitation Sciences. Liz Carrington, apediatric physiotherapist from London and Vandana Bedi, then Occupational
therapist, developed and implemented the first course making Mita’s initial idea areality. Once convinced, Mita persuaded the academic as well as the Government3

authorities to see the relevance of these programs. This is what ignited the creative
expansion of services for people with disabilities.

The partnership between the three leaders in the early years, Mita, Minu and Anita, laid the foundation for the development of an organization with strong value
based philosophy and a professional approach to the work in the area of disability.
Gloria Burrett and Vandana Bedi succeeded them as Directors, consolidating thephilosophy and expanding the horizons. Syamala Gidugu, who joined SSNI/AADI
as a teacher in 1987, and now is the Executive Director, combines the legacy andthe culture of SSNI/AADI with contemporary challenges and needs.
Mita was dynamic. Romi Khosla, the architect, who designed the building of
SSNI/AADI said, “Mita knew no boundaries.” In her mind, anything was possible.
Commenting on her spirit and will power in overcoming a medical prediction oflimited life, Dr. Srinath Reddy, then a cardiologist at AIIMS describes “herunbending spirit (which) refused to accept the limits that medical sciencearrogantly sought to set on her life.” He further added “(I) thank her for giving me
the most valuable lesson as a doctor. Not to take anything for granted.” Mita
continued to guide the work of SSNI/AADI all through the 90’s, often having

4

meetings in her hospital room or suddenly appearing in a wheelchair straight from
hospital to support the staff when the annual inspection was going on.

Mita spent long hours at work along with her team. This resulted in rapid
expansion in the early years. Mita had no time for herself. Vinita Rawat, a much
loved and feared senior teacher remembers… “The school was in its infancy. Mita
had funds to raise to pay the salaries and the monthly rent, organize training
programs, and meet government officials for further help. Her work was round theclock. She had literally no time for herself. On one of those days, she was rushingout of the gate and then remarked. “I’ll have to find time to get my eyes tested.
One of them has definitely deteriorated.” That’s when we noticed that one of her
lenses had fallen off somewhere!! Was Mita relieved!! She was off to complete her
mission.”5

Mita often spent time counseling staff members, family members as well as
children with disabilities when they were troubled. After a session with hereveryone went away feeling good, nurtured and with a sense of direction for the
future. Amrit Hallan talks about a learning through his student days which has
stayed with him for life – ‘one has to learn to take responsibility for one’s actions’.
Mita was deeply spiritual. Gloria Burrett, the then Director of Services, talked
about how spirituality came into the work of SSNI/AADI. She said” it is deep
spirituality which helps us to sort out conflicts, forgive one another and feelempowered to work. This reliance on spiritual concepts is much more effective
than any form of counseling. This concept of oneness has helped us cut across all
barriers of religion, caste and social hierarchy”.
Mita never looked for personal recognition. This developed a culture in
SSNI/AADI for collective ownership of work.

6

SSNI/AADI strongly believes that it is what it is today, because of the collective
effort of hundreds of people – people with disabilities who contributed throughsharing of their experiences of discrimination and exclusion and focused theattention for relevant services. They became a crucial part of the training teams
and over a period of time joined in the advocacy programs. Families of people
with disabilities also guided the efforts on what needs to be done beyond the‘technical’/’specialist’ work. Professionals who gave up more lucrative jobs towork at SSNI/AADI, individuals and companies who believed in the work andsupported financially, officers in the government who gave their personal time tounderstand this emerging area of work, Professionals from varied fields, lawyers,
doctors, architects, business executives, teachers, artists, who gave generously of
their time and expertise. And neighbors, students, extended family members took
on individual responsibilities, that made it possible for the work to continue.
All of this required constant focusing, planning, motivating, guiding and training
which was initially taken up by Mita herself.
Today SSNI/AADI stands on a strong footing, with the second generation
leadership taking on with the support of some of the founder members.

7

Mita’s missives: A few excerpts
A personal note to her friend/colleague revealing her
vulnerability (1997)

Mita’s address to a large gathering at SSNI/AADI
during the visit of His Holiness Dalai Lama in 1995

8

Excerpts from Mita’s letter to her colleagues introducing a spiritual practice she
knew that would add quality to the lives of people with disabilities

9

A paradigm of thinking, knowing, believing:
Mita’s legacy for SSNI/AADI

To work alongside Mita was to be immersed in a process that constantly
challenged set ways of thinking, questioned a mere aping of the best of the west,
and focused on the real stakeholder at the heart of all our efforts; the person withdisability and the care giver. So often just by being a part of the reflective processof a case conference or the planning retreats initiated and chaired by Mita, webegan to believe that complacency is a sin, that we are accountable to the people
we work with, that professions need to cut across boundaries to deliver effectively
in the spirit of transdisciplines and that the- centre- of excellence approach has toco-exist paradoxically with the responsibility to ensure the widest reach ofservices. The greatest impact on those of us who worked alongsideMita
however will always be from her set of core values of justice and inclusion thatstood starkly in the prevailing context of charity and welfarism in the 1980s.
Values that are central to contemporary thinking and which we are still trying to
do full justice to for them to really define our organisational culture. How grateful
we are to have had a prophet, visionary and teacher in our midst!

10

Within us even today Mita’s guiding voice provokes us to ask these questions ofourselves:

What does India really need?
At a juncture when SSNI/AADI was addressing the dearth of rehabilitation
professionals by exploring its own training involvement, Mita’s vision challenged
the existing medical- model oriented physio/occupational therapy
training
coursesin favour of more holistic person-centered and community-oriented
courses. This was too radical to be easily accepted by others and yet today forms
the basis of our knowledge of relevant content in ongoing courses. At a time when
SSNI/AADI is changing its focus in the area of training, it is this core question thatremains a beacon. Yet another example of the macro relevance underpinning her
thinking was the concept of partnerships with community based organizations like
DEEPALYA and LOK JUMBISH which heralded a new way of working – abuilding of the capacities of existing professionals to address the needs of people
with disabilities within the communities that they were working in. The result wasa wider impact with minimum resources and ensured inclusion for people withdisabilities. Today, this conceptual thinking is translated as a “convergence” of“disability issues’ into ongoing development programs.

Is this strategy really relevant in this context?
When CBR for example was making its presence felt in India, Mita was no easy
convert. ! This stringent question was applied in full force compelling us to read,and to research for ourselves before buying into the concept. This was vintage
Mita. We grumbled and how….but this was the way we learned. A vivid image ofMita is of her in a home in rural Dayalpur, with Dr. Anandlakshmi of Lady Irwin
College, using sticks and mud instead of pencils and crayons, to make cognitive
testing more culturally relevant to and cognizant of the strengths of ruralchildren. To see through her eyes was to realise that rural children from preschool
age could recognise their own fields as different to a neighbours rather than staystuck with a blinkered view of narrow norms which devalued their potential.

Will the poorest gain?
“Keep an eye on the person who might not easily access your service”. It was thisquestion, often asked, that kick-started the urban CBR programme at SSNI/AADI.
It was a question that flowed from the deepest part of Mita. “The poor. Think
about the poor! “Years later when she was no longer at the helm of SSNI/AADI,
her informal sessions with people with leprosy, often on the street, with bhajans
blaring from a tape recorder were high points for her. This was no duty, it was her
nourishment. Mita’s phone calls waking our consciences are legendary and were11

often met with a moan, “Can’t Mita chill? It’s Sunday!” Apparently never, as longas human need was in existence. Her heart pain was never allowed to get in theway! “Let’s organise blankets for them. It’s so cold” or “Shuro says malaria is areal killer disease. We can prevent this. Can you get 300 mosquito nets anddistribute them to the poorest in the slums. I’ll send Ramu with the money!”
These are words that have the power to rock our consciences even today. Thissense of the other, seemed to emerge from a well spring that flowed till the end.

Where is this service really needed?
Going beyond the limits of urban-based comfort and complacency, we werecompelled to proactively encourage persons from all over India to attend thetraining courses and return to their far flung areas to initiate services. Stressed
mothers supporting each other in Ludhiana, that young adult zooming into a
prevocational set-up on his wheelchair and a child with cerebral palsy enteringschool in Shillong, or parents of children with cerebral palsy forming an
association in New Delhi to address the burning question ”Who will take care of
my children, when I am no more ? “, or trained volunteers and teachers in Gwalioror trainees encouraged to set up independent NGOs for the most marginalised
groups in urban poverty areas, are a few degrees of separation from this aspect ofMita’s vision.

Are we listening to the person with disability/ care giver?
What comes to mind is that of a frustrated mother who complained about her childnot getting regular services at SSNI/AADI. No amount of explanations oralternative support was enough. We were a weary, angry, frustrated bunch ofyoung staff who expected Mita to support us in this stand-off. What happened was
so different as our attention was focused on the need of the mother underlying her
ranting and raving. WE were the ones left doing a re-think of our emotions! We
had to, and gosh how we were reminded to “sit on our egos that needed thisappreciation for all our hard work. “Does this programme include elements that nourish the soul,for those many bleak moments of reality?
Using India’s theism as a valuable resource and her own spiritual practice andconviction in the power of a connect with an internal force , Mita initiatedindividual and group sessions with a spiritualelement
that held many
caregivers through their stress , anxiety ,depression and physical exhaustion andprovided persons with disabilities with a sense of meaning and sustaining
spiritual strategies through their ongoing struggle. None of us at SSNI/AADI can12

forget the day a spate of harmless questions in Mita’s soft voice were asked of us,“we focus on a child’s body, mind, feelings…what about their spirits, their souls?
If they were your children wouldn’t you give them a sense of their inner strength, afaith in a power they could tap into? “Let’s see what keeps us going when thegoing gets tough…. Shouldn’t we share this with our students? “Mindfulness,
strength-imparting mantras and spiritul discourses were regular inputs. Withhindsight, this was a remarkable addition to the work, a transpersonal element, that
contemporary research affirms is essential for wellbeing.

What will enable a thriving spirit that bonds people and createsa community ?
It is this focus that has kept alive within SSNI/AADI the spirit of sharing,enthusiasm, joy, mutual challenge, and bonds well beyond professional ties.
How else can , there be unison despite differences, and that walking of the extra
mile for each other? SSNI/AADI‘s family-spirit legacy is the outcome wherecelebrating with families and sharing each others joys and pains, create a connectthat goes deeper and larger than simply sharing a work vision.

How do we ensure continuity through a next generation ofworkers ?
Looking way beyond the contribution of her generation and the next, Mita
created an innovative supervisor’s course and foresaw the value of a training
component in a funding programme to complement the hands-on experiences of
ADDIs workers. At least 11 staff including special educators, persons withdisability, supervisors and trainers, a carpenter, basic developmental therapists anda counselor brought back to SSNI/AADI relevant information and experiencesfrom CBR projects, Vocational institutes, Inclusive set-ups and academic Institutes
from in China, Japan, USA, Africa and the UK. This was another way-before-its
time Mita- inspired plan. It is a question we need to keep asking today to ensure acontinued life of the organization and its ever widening impact. It is one way wecan share and sustain Mita’s dream of justice, inclusion and compassion for all.
Mita…our last words are to you; our mentor, mother-of sorts, dear friend,
alchemist and rare soul. You have left a legacy…one that goes way beyond thatwhich is seen, one that is interwoven deeply in the depth of our thinking, knowing,
and believing. This keeps you ever alive.

13

A Woman of Silk and SteelDr. K. Srinath Reddy
If I have to search for a reason to feel proud of belonging to humanity, in an era
which Pope Francis aptly describes as one where the world is witnessing the‘globalization of indifference', I only need to recall the life of Sushmita Nundy(Mitadi).
I first met Mitadi as a patient in the All India Institute of Medical Sciences(AIIMS) even though I knew of her earlier as the wife of Samiran Nundy, arenowned surgeon at that premier institute, and also as the Founder and Head of
the Spastic Society of Northern India. Apart from working as a cardiologist at
AIIMS, I was also the Associate Editor of the National Medical Journal of India,of which Samiran was the founder Editor. I came to know him well professionallybut had not yet met his wife in person.
It was in late 1988 that I first met Mrs Nundy. I had just returned from 16 monthsof stay in Canada after completing an MSc in Epidemiology at McMaster
University, having gone there on study leave from AIIMS. I learned then that Mrs
Nundy had been admitted to the Cardiology service of AIIMS a year earlier withchest pain. After investigations, she was diagnosed to have Syndrome X (angina
with normal coronary arteries), a diagnosis with which doctors in London agreed.
Her heart function was reportedly normal.
So it was a shock when she was brought to the hospital emergency, in late 1988,
with severe congestive heart failure. This condition results from extensive damage
to the heart muscle, often due to a severe heart attack and less commonly fromother heart muscle diseases classed together as cardiomyopathies. On
investigation, Mrs Nundy's heart problem was now diagnosed as cardiac
amyloidosis, a type of cardiomyopathy. This condition is caused when the body
produces an abnormal protein (amyloid) which gets deposited in the heart muscle.
The heart becomes stiff, with restricted filling of blood and loss of efficiency inpumping it. As a result, there is fluid 'congestion' in the lungs, liver, legs and otherparts of the body.
Clearly, the disease had begun insidiously a year earlier and had progressed to theadvanced stage of cardiac failure. The diagnosis was confirmed by cardiac biopsy.
Samiran's extensive professional contacts in US and UK were used to confirm thepathological diagnosis.

14

This was gloomy news for Samiran and all doctors associated with Mrs. Nundy’s
care. Chemotherapy, the only treatment for reducing amyloid production, is noteffective in reversing the course of the disease. Supportive care, for treatingcongestive heart failure, was needed to reduce symptoms of discomfort but would
not alter the dismal course of the disease. At least, that was the conventional
wisdom of the time.
Samiran reviewed all available research evidence and consulted doctors at theMayo Clinic who had the largest accumulated case series of cardiac amyloidosis.
The average survival after the onset of congestive heart failure, even on the best
available treatment, was six months and the longest recorded survival was thirteenmonths. It was at this time that I became the treating doctor for Mrs. Nundy.
She was a revelation. Samiran had already disclosed to his wife all the facts about
her medical condition. He was known to be always forthright in everything he did.
In this case, his respect for his wife did not allow him to hide the truth even if it
was so unpleasant. He also wanted to discuss the plans for their young children
with her, to learn about the mother's aspirations for their future.
She told me about this conversation. I expected her to be depressed anddespondent. To my great surprise, she radiated calm confidence. “I am not goingto die so soon" she said, "I will live to see my children grow up. I also have tocontinue my work with the spastic children who need care for their disability. I
still have many things to do and I will surely live to do them." It was not bravado
or denial which sometimes patients display when confronted with an unpalatable
truth. It was born from innate conviction that she could battle the disease with her
will power and not let it defeat her purpose in life.
My respect for her increased each time I met her. She wanted me to give her theunalloyed truth about her clinical status and test results but in return infused
confidence in me that she would beat the odds. It was always an engaging
conversation about many things in life, with the unwavering thread being her
unbounded optimism. I came to know of her love for classical western music aswell as her faith in Satya Sai Baba. By this time she had become 'Mitadi' to me.
In between periods of hospitalisation, she continued to work, going to the Spastic
Society- sometimes in a wheel chair. She tended to her own children with loving
care. She lifted Samiran's spirits with her cheerful confidence. My wife, who had
started working with the Spastic Society as a developmental paediatrician, gaveme accounts of Mitadi's devoted and inspirational leadership which continued to15

guide the institution despite a disease that would have seriously disabled anotherperson with a weaker will. Mitadi always greeted me with a warm smile and I
invariably left her room a happier person than I was when I entered it.
Towards the end of the chemotherapy, she asked me if she could take Tibetan
medicine as per the advice of His Holiness Dalai Lama's physicians who visitedher. I told her that she could, provided she did not discontinue the allopathic
treatment. She then started on the dual treatment which she continued since.
Frankly, I do not know what worked but Mitadi did beat all the odds- and by amile. She lived for 26 years after the diagnosis of cardiac amyloidosis. I say lived,
not merely survived, because it was a full life.
After some years of a professional and personal association that I have cherished,
Mitadi’s care shifted to the Gangaram Hospital, which Samiran joined after an
early retirement from AIIMS. I too left AIIMS in 2006 to lead a public healthorganisation but saw Mitadi on different occasions at different venues, lunchingwith her family or at a condolence meeting for a mutual friend or on a visit to herhome. She was still vibrant, with a luminous smile that always lit up my heart. She
gave up her leadership of the Spastic Society after suffering a stroke some years
ago but continued to inspire her successors with her vision. Even her recovery
from the stroke was remarkable and the way she overcame the challenges of theresidual disability made me marvel at her will power.
Indeed, it is that indomitable will power that I credit for the medical miracle thatwas Mitadi's life in the last 26 years. She has not been recorded in the scientific
literature as a case of astounding survival. Despite being the dispassionate scientist
that he is, Samiran would not have attempted it. I would not only respectconfidentiality during her life time but also would not know how to describe thevital ingredient of her therapy- her own unbending spirit that refused to accept thelimits that medical science arrogantly sought to set on her life.
I write this now, a month after her passing, not only to pay a personal tribute to
Mitadi's memory but also to thank her for giving me the most valuable lesson as adoctor. Not to take anything for granted. I am still a great believer in science but
now I also recognize and respect the tremendous power of the human spirit that
extends the power of healing beyond known medical treatments. I have also seen,in Mitadi's face, that the glow of goodness can dispel the gloom of illness. Her life
provided proof that love for others can be a more powerful elixir than potent drugs.
She will remain forever the inspirational memory of an exceptional human beingtruly a woman of silk and steel.

16

vlrksek ln~xe; Arelksek T;ksfrj~ xe; Ae`R;ksekZe`ra xe; AAÅ¡ ”kkfUr% ”kkfUr% ”kkfUr% AA

vOoy vYykg uwj mikb;kdqnjr ds lc cans A,d uwj rs lc tx mift;kdkSu Hkys dks eans AA

asatomā sadgamaya

Awwal Allah Noor Upaya

tamasomā jyotir gamaya

Kudrat Ke Sabh Bandey

mrityormāamritam gamaya

Ek Noor Te Sabh Jag Upjeya

Oṁ śhānti śhānti śhāntiḥKaun Bhale Kau Mandey

If something comes to life in others
because of you,

Then you have made an approachto immortality
Norman Cousins