What Writing Means to Me and My Goals In Writing…!!

When one tugs at a single thing in nature, he finds it attached to the rest of the world.
– John Muir –

Today I just finished a basic writing workshop. I haven’t been to any of these kinds of workshops before. I used to think, my writing as something that’s in me or some therapy or some relief. So never heeded too much on various things.

Uff.. what’s writing to me then?

  • Writing to me is the dear lover… The crook of that hand that re-assures me and makes me feel safe
  • Writing to me is the Dearest friend… Never judges me and makes me feel uncomfortable in my own skin
  • Writing to me is the immense Joy… Engulfs me with such tight hug, I sometimes love to be lose my balance.
  • Writing to me is that private space… that is sacred and can never violated in anyway
  • Writing to me is that Positive feeling… of living beyond pain, misery, discomfort
  • Writing to me is that flying feeling… Where I become everything and anything … one day I am architect, one day I am the prize winning author, one day I am avid traveler and seeker.. anything and everything

Writing to me is ONE BIG CELEBRATION OF WHO I AM..!!

Dears.. Let me tell you one story of a disabled bird, it so wanted to fly, everyone teased her gait, her hunched back, her skewed look, her lack of confidence, her everything is under the scanner. So, one day it decided that, enough is enough, she wanted to take charge of her life.. she tried to walk, it was always a limp, painful limp, it didn’t felt good. She thought too much, she wanted to fly, but first she thought she must never reveal her idea of flying to anyone. The bird has enough of criticism in her kitty already. Then it thought, what’s the downside risk of falling from walking and falling from flying..?? it googled, it searched here and there, then finally she decided to fly. She’ jittery inside. The flying day came. She set the mood, prepared well, ate nice breakfast, chose nice day with nicer weather. But still she’s tense, she went to loo twice and thrice, she sat on the pot, she tried to cry, nothing coming out, neither shit nor tears. She felt as if she dried up. She looked up at her legs. One is tiny and other is scrawny, how is going to walk and then fly?? It asked itself. She wanted to wipe her face, and found two wings that are soft, feathery and touched her face.

The bird’s heart Jumped with Joy.. IT DID HAVE TWO WINGS.. TWO WINGS MY GOD!! It checked, they are working fine. It went out.. never waited for a smooth road for walking, it limped with joy.. IT TOOK OFF A MAGNIFICIENT TAKE OFF.. IT SOARED HIGH.. FELT BODYLESS.. SO AS ME..!!

I needn’t tell you who the bird is, but imagine how stupid the bird is not to recognize and value its wings, that are there with her all along.. !!

Thank you Bhavana Nissima for making me realize my wings… you will hear more flap flap now, and some are going to be tapestry of intricate lives…!!

Thank you Sridevi Datta… for being the essential unconditionality that goes with any writing

Thank you Padma Meenakshi… for being the lovely analytical with ocean of love and respect towards every word of mine..!!

I started this piece to write about my writing goals… I feel so calm now that my only writing goal is to


~~Sai Padma


© Sai Padma: IPR// All Rights Reserved


20170319_074239 (2)


We never meant to be perfect in anyway

When we set on this journey

You.. on verge of monkhood

Me.. on verge of overambitious madness

How we blended towards a common goal

Of living in present

Is a never-ending story no less than any epic

But I am totally amazed in this

Journey of 3287 days

Most of the time… We agree to disagree

Most of the time.. we waged wars over opinions

Most of the time.. we were so different

Most of the time… we were just adamant


I feel exited to cross one more year with you

By literally working hard to walk

With the feet that are

Never really taken any step in last 30 years

Yesterday a friend said- “True Affection held you together’

I corrected her saying “True Respect held us “

I really respect you dear… I know you do the same…

I also Know you don’t like social media

But I want to say to all

Physically, mentally and socially disabled persons out there…


“when you respect Disabilities & Nurture Abilities Together

Journey is beautifully possible with such stark differences

Be it in our FEET or THOUGHTS … !!”


~~Sai Padma


© Sai Padma :IPR All Rights Reserved

Where are YOU on International Disability Day’2016?? ………Facts, Failures and Future


Let us work together for the full and equal participation of persons with disabilities in an inclusive and sustainable world that embraces humanity in all its diversity.”

UN Secretary-General Ban Ki-moon

Today is International disability day. Another year has come and passing on for disability sector, every December we wait for something, we anticipate and pray for certain things, we have the audacity to think that things will change towards inclusion. We hope that this year will be the end of discrimination and abuse. We are tiresomely happy sometimes, that though you are burned, somewhere something is happening for better. Some years we cringe and cry helplessly, that years together activists who have worked and made petition after petition, works day and night, their work goes down the drain on a Disability Day… then we take a fall, dust off our insults, gather the energy of rights and take another leap with our assistive devices for another year of hope, courage, rights and inclusion.


There are TWO answers to it..




let me try to explain this in different perspectives and perceptions to the extent as an advocate and as a Person with Disability

· Collective Bargain & Team Work:

With due respect to gender rights, human rights and other rights based issues, achieving them is relatively possible even in a larger country like India, where there is ‘win -win’ in this scenario. Because possible meeting and networking is not possible in Indian scenario, given the lack of accessibility and pan Indian organizations working for persons with disabilities. We are still at the stage where we ASK to include, not DEMAND it as our legal right. With geographical and sectoral/theme/disability wise differences are stopping us to act as one voice consensus in India. This is a serious problem we are trying to attempt.


The implementers, government take full advantage of the chaos, and most of the times, bills were passed into Acts without consensus and proper discussion of DPO (disabled people organizations). Lone voices however truthful, they may be being snubbed by old leadership setting up a perfect example of one-sided decision making approach. The proposed amendment which is accepted yesterday as a ‘surprise package/gift’ by government to sector is seriously suffering from one thing- TRANSPARENCY AND INCLUSION. aren’t we fighting for the same?


You can read it here- https://docs.google.com/document/d/185TDNRg6wVIR-Ob13paUtnvl4cbxTzkpknXEpuY-eos/edit

Our journeys together are very short:

as persons with disabilities, our journeys are laced with pain, lack of access, physical rehabilitation and mental agony of being an activist in a country where, MOST OF THE RIGHTS ARE CONSIDERED AS CHARITY AND MAGNANIMITY of the giver. Today, I remember many many friends, whom the sector lost, best example Mr. Rahul Cherian, Mr. Sanjeev Sachdeva, among many great leaders from different disability forums in India. It pains a lot sometimes, we lost our battles sometimes even before they begun because, our warriors physically defenseless to this carefully polluted, structurally inaccessible India.


· Everything about us-without us:

All these hue and cry is to include, when you can’t reach to people, institutions, services and facilities, what all you will do is, plead, manipulate, negotiate alone, first with immediate family, care givers, employers and environment and then with system. In the whole process, MOST OF THE DISABILITIES AND DISABLED PEOPLE ARE NOT SEEN, THEY ARE NEW UNSEEABLES (MUCH WORSE THAN UNTOUCHABILITY PRACTICE WHICH WAS PREVELENT)


If we take into cognizance the accessibility part of the above cartoon, lack of access is a great equalizer and ignorance builder.

· Disabled people are an inspiration vis-à-vis needs no legal rights:

Who sets out this race or life of disability and who stops the buck and at what pace, place and time…? does anyone has an answer to this? no,

By being disabled, are we exceptional? No, we are not exceptional, our will power sometimes may be exceptional…!!




Pictures courtesy: Disability Rights Alliance, Vaishnavi Jayakumar and Desi-bility Dialogue whatsapp group, UN Enable, thank you so much from bottom of my heart..!!


© Sai Padma: IPR:// All Rights Reserved

Of Course .. I am with Her.. Is that a Question??

Hillary Sai


                        Life is so normal and very ordinary for a person like me. When I am planning my visit to United States to study the organizations working for the disabled and elderly, I never knew I will stumble upon a golden chance to meet the contender of the most powerful presidency in the world!!


As Indian Not-For-Profit development professionals, we know what yeomen service Clintons and their initiatives and health care are doing for Indian people. For the world, Sen. Hillary Clinton is the most powerful woman in political, social scenarios. It was a surprise for us, when FOSAAC (Friends of South Asian American Communities) invited us to participate in their fund raising event held at a private residence of Anaheim Hills, Los Angeles. Working in rural areas of Andhra Pradesh me and my colleague were so engrossed in our own work, that Clintons means HIV/AIDS related work for us. Then we came to know it’s actually a fundraiser for her presidential campaign.


We went there with slight apprehension about the meeting. And we ended up meeting representatives from India, Bangladesh, Pakisthani, Nepal and Sri Lankan community people living in California. It was a pleasant morning. And we all asked to introduce our selves. We were asked to talk about our experiences in the not-for-profit sector. We discussed our work in rural Andhra Pradesh for the HIV/AIDS infected and affected children and adults and our rural health education and livelihoods programs run under the banners of “LFWP Trust” and GLOBAL AID


Our work and presentations were well received by all community members. It’s a great reward for us to talk in the group of people, coming from different countries. The different flags of India, Bangladesh, Nepal, Sri Lanka, and Pakistani were a great sight to see together. Mrs. Clinton has attended the meeting for the breakfast meeting.

clip_image004She addressed the gathering of all the leaders. With such elegance and eloquence, she answered the questions reminded us of our own Mrs. Gandhi. In her addressing, she talked about rural health aspects. And also more transparent health care system in US. She answered all the questions that were asked about South Asians. She said her focus is on health care issues of America. And she referred India’s development in several fields. She emphasized her focus on research for Senator Clinton discussed the importance of the invaluable relationship between South Asian nations and the United States and the progression of India’s economic front. She acknowledged and was appreciative of the contributions the South Asian communities have made in the United States. Universal health care, immigration policies, and education were amongst the issues discussed. Furthermore, she informed the audience of the immediate attention needed to global warming and environmental changes. In regards to foreign matters, she spoke of the economic rise in China and India. “Deepening and strengthening” of U.S relations with India, one of the world’s oldest and largest democracies, would be top of the agenda if she is elected President of the United States of America.



clip_image006   Our Working Team with South Asians

We were fortunate enough to see her again within two weeks at the home of Mr.nadadur Vardhan and it’s a breakfast meeting again and she interacted with all very well. Actually, what attracts me to her and her love for India and simplicity. When she is leaving mesmerizing us all, I remembered I forgot to give her my book of poetry collection. But when I called her back “senator Hillary Clinton..?” she stopped and came all the way and took the book. I am glad that her collection might have my book of poetry in English. 

On that eventful day this what I spoke, with packed audience from different communities, can be summarized like this-

“Dear friends…

                        I am SAI PADMA, work for a not-for-profit organization committed towards rural education and health care and empowerment of disabled persons.

                        It’s a great moment for a person like me to join all of you here to meet and greet the most wonderful, strong and sensible lady mrs.Hillary Clinton.

·        As a non-profit worker I know what clinton’s did and still continue to do in health sector world-over.

·        As a woman, I know what strength it needs to balance the gender dimension and humanity

·        As a disabled person, I hope and believe she would do a lot for the disabled and how research can help the whole humanity

·        As a human being, I know what peace means and have immense confidence that she will become instrumental in delivering it for world prosperity.

We offered our gratitude to the group who has given us the opportunity to participate in the FRIEND RAISER. It’s really feeling great to meet a woman like Hillary who is focused, smart and confident.




When today I read her candidacy has been accepted … I feel like this

Again.. Yet Again..

World is going to bow before a mother

A natural leader ..A nurturer..

Yet Again..

There’s hope for

Billions of children suffering

Malnourished, wearing only courage to live as skin


Yet Again..

World will robe in hope of

A peaceful home over war ravaged souls

Once Again..

Its safe to be in home ..

Where a mom, woman a friend is taking care of things

Its not a question for me..






~~Sai Padma Anand



The above article is originally written for my Upcoming book ‘ WORLD OF WHEELS (WOW)- A DISABLED WOMAN’S JOURNEY THROUGH CULTURE, LIFE AND FAILURES..!!


© Sai Padma:// IPR All Rights Reserved



Hi Friends.. My name is Sai Padma (christened by my parents)

I am an advocate, finance professional, social worker and singer (out of choice and hard work)

I am a polio & scoliosis survivor and wheelchair user (No choice …neither any divine intervention here)


In my colony most people know me as “Wheelchair Madam” (christened by a maid who worked for me sometime .. who has vision like Shri Modi Ji, our PM.. she identified me with my wheelchair.. I don’t blame her)

Well.. Since this Divyaang business has come.. I am feeling somewhat powerless and so fearful for the following reasons

· What if someone decides to build a temple for me? And bury me along with my wheelchair?

· What if suddenly they decide that I need to be worshipped and break a coconut on my head??

· What if they include me in the list of gods and goddesses who doesn’t speak at all and snatch away my difficultly earned Adhaar, PAN , voter card??

This list is endless in my mind… if you are unaware of what’s happening in India and unaware of our new status for disabled.. check this chronology…!!


With this chronology of events, stage is set now in India… to call all PERSONS WITH DISABILITIES AS DIVYANG ..despite outcry from disability community to take the word back, the government wishes to so please our Prime Minister.. on 17th May 2016 they have announced that ..they will name the DEPARTMENT OF EMPOWERMENT OF PERSONS WITH DISABILITIES to “ DIVYANGJAN SASHAKTIKARAN VIBHAG’

When I heard that news.. my mind struck to one quote.. The real disability is attitude.. the attitude of one-side thinking and the attitude of not taking into cognizance millions of sufferers who are shouting on top of their lungs that, there is nothing divine about them.. treat them as humans and give them the rights and dignity..!


Is the heart and brain is not “Ang” (body part ) of human… if , Divyang applies to us, what about ATTITUDINALLY DISABLED ANG PEOPLE sitting at the helm of governance.. are they not divyaang?

Now , let me come to the constitutional part of it..!

Article 18 of the constitution prohibits the State from conferring any titles. Citizens of India cannot accept titles from a foreign State. The British government had created an aristocratic class known as Rai Bahadurs and Khan Bahadurs in India – these titles were also abolished. However, Military and academic distinctions can be conferred on the citizens of India. The awards of Bharat Ratna and Padma Vibhushan cannot be used by the recipient as a title and do not, accordingly, come within the constitutional prohibition”. The Supreme Court, on 15 December 1995, upheld the validity of such awards.

Well.. then who’s anyone to confer a title on Persons with Disabilities so generously… despite we all openly rejecting to the so called title given to us? Lets check the constitutional validity of this naming ceremonies to communities…!!

The Constitution of India under Chapter III guarantees fundamental human rights to all persons. The right to equality is enshrined in Article 14 of the Constitution and recognizes that all persons are equal before the law. Persons with disabilities are entitled to this guarantee to not be discriminated against in any manner and to be treated equally, which includes the requirement for special treatment where required.  

Well… here also , the so called man ki baat is not community man ki baat but.. PM ji’s man ki baat. This is a clear discrimination. Special names and titles we haven’t asked for…! How about a Human Rights Violation case on Department and Prime Minister…??

The Constitution secures to the citizens including the disabled, a right of justice, liberty of thought, expression, belief, faith and worship, equality of status and of opportunity and for the promotion of fraternity.

Well.. what happened to the above things when we are agitating like this?


Constitution says- No Disabled person will be deprived of the right to the language, script or culture which he has or to which he belongs.

Our culture says .. we are PERSONS FIRST.. A PERSON IS NOT A GOD.. STOP THIS STEREOTYPING..god cant file cases.. we can.. lets file case on non-divyang governance..!

Check this..!!


We all have right to live and live with dignity… and unknowingly we all fighting with still the word, handicapped, disabled, specially abled, specially challenged, vikalang, vishisht ang, differently abled ..!!

If on top of it .. this DIVYAANG IS FORCED ON US, we are left with no choice than .. prove that we are not divyaang ..how we do that??

  • · How about 70 million persons with disabilities not voting as divine parts don’t vote
  • · How about Public Interest Litigation on All the people violating constitutional and fundamental rights of disabled?

Dear friends.. bodies don’t define individuals… disabilities don’t act as markers for individual abilities…

Then why these names? Take it back else you will have a huge payback to equality… by disability fraternity…!!

All the above pictures are courtesy .. our community.. Abha Khetarpal, Vaishnavi Jayakumar, Dr. Satendra Singh , Jeeja Ghosh, Subhash Vasisht, Faisal and others ..whose untiring efforts are showing the real facts behind fake inclusion.. The equality faced charity.. like a human-angel hybrid.. Divyang


Sai Padma , A Person FIRST.. !!

P.S: Some of the Legal & Constitutional Issues need to be verified and are Under consideration by some more experts..!!


© Sai Padma :// IPR All Rights Reserved

A Succulent Gardener for Universal Access..!! -Dr. Scott Rains


Dear Scott Bhai..!

Greetings from Sai Padma, Global Ability In Disability

Scott, I can see you smile so infectiously when I just knocked on your door in July 7th, 2015. Before that, long back you entered our heart with your warm smile and passion to access this earth and make its accessible for persons with disabilities.

Scott, I remember the way you encouraged me to write and the way you sought opinions from India. Working with you I got to think whole new range of accessibility and more champions and their causes.

Scott… what not we have discussed… accessibility of Buddhist sites, beaches, more and more remote and tough areas… Inclusion legacy… what not?

Working with you is fun Scott… Miss you so much in bleak moments of helplessness…!

Everybody know that you are a fighter .. a warrior for access and also a globetrotter for universal design and access and a backbone to tourism industry.

But, few know your tender mentorship and the love and respect you have on your wife and family… having seen more authoritative persons with disabilities in my life and in leadership around… (don’t ask me what type of person I am… he he )

You are the first one to encourage me to take up access tourism as my focus area.

Scott… I miss you so much… but you are within many hearts, guiding them and suggesting best ways to roll on this earth…!

I can’t believe you left your body after long arduous fight with debilitating health conditions. I totally respect and in awe of your fight…

Give us strength Scott.. to carry out the work left by you and to have the same TORCH OF DHAMMA and SILENCE WITH COMPASSION in heart …!

Bye for now Dr. Scott Rains… till we get to meet you in heaven/hell to make it more accessible and amenable for tourists with disabilities over there…!

Patricia… though, I didn’t have the fortune to meet you directly, can understand your support Scott and I pray to god that he gives to strength to deal with the loss…!

BTW, with just being you and working tirelessly… haven’t you already CREATED A SUCCULENT’SEEDS IN EVERY HEART YOU TOUCHED FOR UNIVERSAL DESIGN AND ACCESS ??

What more inclusion legacy we need ? am I right bhai..?

Anand joins me in wishing you a body less travel and NIRVANA as you so deserve..!

Bhavatu Sabba Mangalam..!!

PS: I remember your succulent’s plants… the small gift you have given us while leaving…when we are coming back , my aunt asked me .. why I am so silent and sad? I told her about your health a bit..!

She said.. your friend has given you the ultimate gift by agreeing for the meeting and loved you enough to share his vision with you.. be happy for that and start working on that..!!

I will do so Scott.. THIS IS A PROMISE..!

~~Sai Padma DSC_0105

© Sai Padma:// IPR All Rights Reserved

IFR: International Fleet Review: Access status


With all its pomp and glory, the International Fleet Review (IFR) has started in Visakhapatnam, a city based on the coast of Bay of Bengal. For us, proud residents of Visakhapatnam, also known as Vizag, takes lot of happiness in the fact that, we are hosting it. I mean the eastern naval base located in vizag is hosting it. Nonetheless, its an opportunity that’s been bestowed or honored on a small city that’s going to place a vital role in the near future.

Vizag is a fast developing city, it’s not stupendously growing, thanks to the sea one side and limited space. By division of state in to two independent states, this coastal city has assumed much more importance. Growing up near to vizag in small villages, people like me are of the hope that, one day we will live in vizag and see all the nature’s beauty with all its glory added by man-made events.

I live within 4.2 kms to Ramakrishna beach popularly known as RK beach, where the IFR is happening and I feel completely trapped in my own home, have to satisfy with watching the 56 countries, parading the in the mighty banks of Bay of Bengal along with warships in the sea, in our TVs

Is being patriotic is also such a undesirable thing to be asked by person with disability? Four corners of our house, every nearby junction is closed for security reasons, limited passes were issued to citizens with no priority to Persons with Disabilities and Elders who can’t walk.

At the most what we can do? Take a car ride to nearest junction either Andhra University, or Andhra Medical College ground, Zilla Parishad office, Chief Engineer ZP office, AMC Doctors Colony and Pandimetta Junction connecting roads. 

Ok dears. how do you expect for wheelchair people from walk there, who is there to escort? Any special passes for persons with disabilities and elders?

Smart city, how one city becomes smart without taking into cognizance the needs of vulnerable population?

Every time an event happens, disabled people make hue and cry, and leisurely everyone say.. Oh we are sorry! This country is all inclusive, why do you think otherwise?

No one knows the status of applications/complaints/reports after events, the event is done and dusted. People like me lost another opportunity to witness our country’s might one more time. Sometimes you feel tired being an activist, you feel just bored complaining all the time.

You feel concerned about being “Common Disabled or Common Elder” in this powerful country, where access is eye-wash.

Anyway, I am happy, despite evacuating huge fishermen community on security reasons, and several vendors on the beach who are real beach experience in vizag, navy and governance is successful in painting the beach blue… albeit not so oceanic. As they were not included in the beach cultural events, the events are given to corporate. So instead of applying haldi, vizag applied branded cosmetic look so carefully outsourced.

Anyway, I am happy that Vizag at least applied a fairness cream, patching up the deep holes and making them dangerously shallow, putting a canopy for pollution layered sky, tenting the slums and fisherman community which are the main part of vizag and real protectors of the sea.

Yes, we are smart and global. But are we able and real universal … only time will tell, only time will tell…!!

Signing off to salute to this great country in front of a TV,

–Sai Padma Murthy

A common Disabled person, who neither have a political backing of parties flagging off their flags with disabled, nor part of any governing system, which has wheel carrying personnel at its whims and fancies…!!



© Sai Padma : IPR:// All Rights Reserved



What a DAY means to us.. For that matter anyone? Sometimes we get a clue and sometimes we don’t. When you have a vulnerability called disability, there is lot that goes into mind and psyche of person, that one day can’t contain. Disability is a continuous management of several pains, vulnerabilities, hit and run opportunities and tons of disappointments.

But we raise, dust off the pains, lick our wounds and try to stand and try to make an impact in lives of others. Inspiration is not a mobile app that we can launch and it starts working. Inspiration is sweat, rejection, failure, fatigue and finally a small exhausted smile.

I and Global AID this year have experienced all. From the last year victorious rally to this year becoming a strategic partner to several NGOs, we worked hard this year and reached most unreached.

This year work include:

  • Sophisticated arms fitting to ONE deserving case
  • Scholarship Support to TWELVE disabled people
  • Assistive Devices support to TEN mentally challenged and physically challenged people
  • Job Assistance to FIVE
  • Marriage counseling and Documentation support to TWENTY
  • Access audit of TWO establishments- One a community park, the other Holiday resort
  • Insurance Support to TWO
  • Care Provider Provision to THREE disabled beneficiaries.
  • Psycho social and counseling support to TWO Autism persons
  • Support post Cyclone to Disabled-FIVE
  • Access Advisory Papers –FIVE
  • International Presentation- ONE
  • Rehabilitative services collaboration

But there’s much to do …it pains when these basic things still don’t happen:

  • Persons with disability has no political or judicial voice to ask their rights. Most of the sectors, they are still beggars and jokers.
  • Meaningless Processes followed: its so troublesome to see many severely disabled persons have to go in queue’s for their pensions just to give their credentials like thumb impression, and iris ..if it’s a onetime inconvenience, its OK.. but its EVERY MONTH
  • Minimal job assistance to qualified people and absolutely no strong mechanism to identify and train the persons with disabilities.
  • No support to severely disabled persons who don’t come under any category. Its reported that, almost 10% of the developed disabilities don’t report. I wonder is it still stigma or just lack of awareness or both
  • If job has been achieved, Promotion to persons with disabilities is a big NO NO.. “ God! Why you need promotion.. we spat job on you..!” actual words to a disabled by her employer
  • People treat you as starving for sex and relationships. Chatting is OK but No meeting and maintaining
  • Families think you don’t need property – “ Arre bhai! Disabled and no children nor husband ..why they need property.. well.. they cant manage too ..” Actual perception even In case of most qualified disabled
  • Privileged Disabled think, they own the other disabled persons… Enough of Sanskritisation..!!
  • Governments think… A SCHEME FOR EVERYTHING on paper
  • Friends think you are inspirational….Please be rational on us sometimes
  • Lovers think you are so in secured and demanding … Give me a break
  • Children think disabled parents are dumb wits .. who needs discipline here ?

But still.. we have come a long way.. but nearing only half way.. lots and lots to do before we call it quits..!

Miles and miles to wheel or crawl before we call it end of journey..!


© Sai Padma:// IPR All Rights Reserved

Pic Courtesy: PRAGNANAND

Motherly Super Abled- Ruth Sirisha James


Looking at the chubby happy face of Ruth and her effervescent voice when she says “ heellllllllllllloooooooooooooooo didi ” with a beaming tone , one feels “ all is so well” with her. Well, everyone has their ups and downs you might feel… But not always so.. When you manage a special child 24/7 and fight with world like tigress to give the same respect to the child as she gives.

Well.. some days child is neither child nor adult, I wonder how Ruth manage those things single handedly, I am selfishly happy that she is there for Bryn to do that ( like any other disabled person who wants a care provider all the time ) sometimes I am equally guilty that.. but Who is asking for ruth’s rest , her passion and her time and her alone vacations? Not that people around her care less for her… they love her crazily.. .. But some people are so irreplaceable and since eons of years, care of the child is mother’s responsibility, if its special child double, triple and hundred times responsibility.

Meeting ruth and glancing through her struggles balancing a well formed and sensitive audult special kid.. Make me understand and feel guilty about the way my mom worked for me , my aunt poured all her time into me, now Anand.

Sometimes you feel so guilty.. What bryn must be feeling now? I always felt if someone is throwing tantrums.. There must be some difference, or some disturbance that’s peeping in their mind..

Brain..Oh!! what a tressure and pressure too..! I remember my mother breaking down at every surgical recovery rooms I went , my father acting smart but feeling fear inside whether I will survive another surgery or not, my pinni’s patience every time , when I have to go through raging fevers and lung congestions due to scoliosis and afterwards.

How ruth must have felt when Bryn fell from fleet of stairs and still survived with a head injury and his crooked beautiful smile..!

What my family and now anand going through sometimes even helping us pee and cleaning our mess…!

Life is not easy? Don’t the god know that what bryn going through and what my right side is going through ?

Talking a friend who has an autistic son , she was quipping about a accepted fact that, her son will never have a mature conversation like normal children with their parents. Does god didn’t know this? Sometimes I wonder at the immense strength of mothers like ruth..!

Unless until they accept fully the special child as part of their core being, it is not possible to feel them like an arm or leg or apple of their eyes.

However much I praise , I cant praise the care providers in our life.. my mother, grand mother, pinni and anand..!

In case of bryn, Ruth, Daisy, James garu and gang of ruth friends and young boys

Having said that, I don’t like god.. I hate him for the fact that, whats going to happen when all these care providers are gone ? the shit part of life is disabled people live longer.. Arun shourie wrote a beautiful book on disability and acceptance by name “ does he know mother’s heart??”

Enough of mothers.. I am waiting for this space to be filled up by one or two fathers at least. Fathers who avoid gazes when they look at disabled children, fathers who never introduced their disabled children to public, fathers who divorce wife when children are found to be mentally/physically disabled. Fathers who just abandon being father..!

If god is a father.. I ask him one question and one request,

My question is… Don’t you know the mother’s heart and survivors guilt?? what are you doing for it ?

My request is … please please oh! Supreme power… help the care givers with more energy and rest, at least give them temporary reliever in their jobs..!

I want to feel gratitude for all the people who helped me… but no matter how much I feel gratitude, the steps are not going turn into a ramp and the unknown brain doesn’t calm

Bryn doze off in tranquillizers and I try to doze off in unanswered questions and new pains & sensations

Have happy sleep Bryn .. Have strength Ruth .. if I can transfer my whole brain strength .. Take it till he calms down.. LOVE YOU RUTH !!



Didi & Anna

© Sai Padma :// IPR All Rights Reserved

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