Creation of a better world for differently abled persons, persons with disabilities, physically challenged persons to live with dignity & respect, making them ‘development inclusive’ and accomplish quality of life

Mission

Mainstreaming into society, differently abled persons, persons with disabilities, physically challenged persons with all natural rights and special rights that they are entitled.

….

                                             A Perspective of a HIV+ Child

I am affected…

The word seems to have

Big bang effect on me…

My parents are HIV

So I am affected

I wonder… how come I am affected?

When they have disease

I look at me… I value me

What has happened to me?

How am I affected?

I feel confused and choked..

Amidst so many known persons

Once known…now unknown

Most dangerous things doesn’t scare

As much as the stares of people!!

Yes… I am affected

When no one comes near me,

Keeping a safe distance

Afraid to touch me when bleeding

Scare to pat me when I won

Greeting me with big ‘Namaste’

Lesser firm handshakes

Different queue on waiting for doctors

Disgusting stares

Excessive pity…no empathy

Feels we are also waiting for

Final Namaste to this world

I am gasping for breath of acceptance

Of value and dignified living

Basic right of a human being…

Deprived from me as I AM AFFECTED!!

I am affected… don’t make me infected too!!

With your insensitivity!!!

I feel sick – when you cover mouth talking to me

I feel weak – when you scared to touch me

I feel meek- when you throw charity on me

I feel powerless- when you decide what is right for me!!

At present the above is the status of as many as 2.47 million children and adults living with HIV/AIDS and many more affected by the name “AIDS”. It is estimated by the end of 2005, there are 15 million children who became orphans due to HIV/AIDS (http://www.countercurrents.org/gathia090708.htm) who lost one or both parents due to the deadly disease. Despite, HIV related work started in many spheres in India; at the earliest stage itself, a structured team work of all the stakeholders is still lacking in this field.

What bothers me, as a person and a social worker, that stigma and discrimination has found its way, in every nook and corner of India. I wish to see an unaffected India where the following is not an utopia but reality, where as:

• Efforts are being done to work cohesively. Enough of back-biting all people involved!
• An open resource and information centers for AIDS orphans.
• Foster care facilities
• More advocacy about AIDS orphan rights
• Etiquette with AIDS orphans making mandatory in schools and colleges
• Combating a problem like a family not an buck-passing attitude
• Working for awareness than deadlines
• Sustainable awareness levels
• More young adults participation at every level of process
• Peer-based, group based activities
• More safer homes, shelters, hostels for affected orphans
• Focus on dignity of living
• Common man counselors
• Identifying new areas of support
• Career opportunities for AIDS orphans
• Best nutritional and educational facilities

IF ABOVE ARE NOT DONE, WITH POSITIVE MINDSET…

WE CAN’T SAY WE ARE POSITIVE TOWARDS POSITIVES, EITHER AFFECTED,INFECTED,VULNERABLE.

Lest, every AIDS ORPHANS DAY, WE CAN RUN A RE-PRINT OF THE SAME ARTICLE.

A presentation

By

Sai Padma Murthy

Common Woman Counselor- POSTIVE 4 POSITIVES

On the eve of “ AIDS Orphans Day”- An FXB International Initiative 7/5/2010

Nandini’s position today’s is like modern hamlet’- in deep thinking of “To go or not to Go!” The issue is Nandini’s sister’s marriage day. They were all planned to go to dinner at newly opened restaurant. Our Nandini has been hearing a lot about that place where food is nice, place is fun etc. etc… From her only sources in that busy house… servants who come and go.

Nandini was also got curious to see place. But as a good disabled child, she learned long back that she should not show her curiosity in visiting new places. So she kept quite as usual. But this dinner was something important in their household. It’s a party given by Nandini’s parents for her sister on the eve of her first marriage day. So it’s a big day in a big family.

However much Nandini wants to be part of the most talked about dinner, no one invited Nandini. There might be two reasons for this, Nandini thought, – for them I am too young to bother with an invitation or too much of a hassle to take me along.

But surprisingly the invitation came from Nandini’s cousin sister, elder to her by ten years. She is also in line for marriage, living with Nandini’s family. She was the one who told Nandini about the dinner party. She encouraged Nandini to come. She dared a bit and asked Nandini’s father on behalf of Nandini

“Oh! Sure! Why not!” –Nandini’s father replied, deeply burrowed in his papers, not lifting his head.

Nandini is ecstatic on hearing this from her cousin sister. She was happy, excited; “thank you Didi!” she told many times to her cousin.

The big day has come, being a perfectionist; Nandini planned everything- her dress, her hair, she is so fond of dressing up. She tried two or three varieties of hair styles, settled with one. She polished her nails. She took out the best dress- a pink one with laces. Nandini is all set to go!

Evening is setting in. since afternoon itself apprehension started in all. Who will wear what, who will sit beside whom… etc…Nandini can hear all the laugh and comments and jokes, chiding each other clearly. She had butterflies in her stomach. Not an easy thing… going out… she thought.

So at sharp six Pm final call has come for all to be at the parking space. All came out with laughs, Nandini pushing her wheelchair slowly, last in the line. Her cousin brother, who was loading up people and things commenting on their attire and cutting jokes, stopped in mid sentence followed by eerie silence. Only the creek of wheelchair is audible.

His face twisted with an emotion Nandini can never forget in her life. Its something that can’t be hidden despite great effort. Then he blurted out” We are taking this also???” looking at the wheelchair unbelievingly. Everyone was silent. Tears are welling up in Nandini’s eyes. At her age, life has already forced Nandini not to listen to certain remarks. Again she tried as if she hasn’t listened to this blunt remark from her cousin. “Without this how can she manage?” Nandini’s mother mumbled feebly. Cousin Sister who encouraged Nandini is nodding her head without daring to utter a word.

Looking at their faces, Nandini’s brother swore under his breath and shifted Nandini roughly to car seat and started loading the wheelchair… cursing something, Nandini thought she never would have listened. Rest of the party started packing themselves noisily, giggling all the way! Nandini looked helplessly while her mom getting into another car after a stern remark from her father; “are you coming or not??”

The group of cars started, Nandini started looking outside the window, as if nothing has happened. She tried to see outside, everything is cloudy. Then she came to know her eyes are cloudy.

They reached the hotel. Again the parade of getting out of car, Nandini started looking out for her mother. Finding her nowhere, she reluctantly shifter herself with great difficulty in to the wheelchair pulled out from car trunk. Being pushed firstly by her cousin brother and just parked her wheelchair before the hotel entrance and left and went back for others without a word. Nandini was alone at the grand front entrance and it took no time for her to fully absorb what’s before her. She heard noise and foot steps behind her. Her family came behind her. They were also stopped in mid-sentence. One group of marriage anniversary couple and some other cousins smiled awkwardly and started climbing the steps.

Now left with Nandini are her parents, brother and cousin sister and two other cousins. Nandini looked at her brother; he shrugged his shoulders in silence and started towards the steps, almost vanished into the vast lobby of the hotel with in seconds. Her cousins started debating who will take her inside! First one said to second one and got back the same reply. That debate turned into an argument and both left without pushing her chair.

Nandini’ father cleared his throat and started saying some words to Nandini; she could only make-out these words, though not in the same order ……“You are a brave girl…had great understanding…I respect that…you should understand you are different from others…You will understand better!!!”

By saying so he left Nandini and started pacing the steps and after 7 steps he asked Nandini’s mom again… “You people coming or not???”

Nandini’s mother and her cousin sister looked at her guiltily, said something in lines; “we will come back soon!!” they left in as fast as they can!

Night has completely set in. somewhere church clock chimed 8 times. Nandini was thinking and thinking deep… crying and crying her heart out!! To the last of her memory, she heard the clock chiming 10times. She has not been aware when they have come back, at what time they have fetched her, and when she was home and in to her lonely room again. She was exhausted with crying… dry and unaware of surroundings. In such delirious state of mind also, she was remembering the same thing again and again… the reason They are embarrassed at her disability, at her being in wheelchair, her polio, they don’t wish to be seen with her, they don’t like a disabled person a member of family. She thought about her abilities, her attitude, wit, wisdom, understanding… what has happened to all? She keeps on awaking with a bout of crying and feeling terrible all the time. Some bitterness seeped into her. She was scared with a shuddering thought that kept on coming repeatedly…haunting her…”is this the beginning of what she is going to face in this world??”

She woke up with a jolt next morning with sounds or laughter reverberating in the house. People are laughing, mocking each other about yesterday’s night dinner exaggerating about the grandeur of the place, great food etc…

Something has changed in Nandini she can feel. Something died inside her. She was silent, determined. She has determination coupled with fear. She has to be independent, otherwise society will her at the entrance gate… she feels. That ten year old girl became a woman in that single night. A woman… whose life was change on a dinner night… Without even having the dinner!!

Picture of Innisigh Tripathy , Who is happily married with a son. Pursuing a post graduate degree in management and a fashion designing course and above all PHYSICALLY CHALLENGED. A woman who is full of life, fun and understanding, she wishes to be a compassionate human being in life. With support from all, she wants to be a good fashion designer in coming years and counsels persons with abilities and disabilities as well. Above everything, a woman who loves her husband and son immensely says her husband is her ground where she stands in this world to lead a dignified and respectable life. She feels many of problems faced by differently abled can be known and solutions can be provided by another sufferer of these insensitivities. Do you find anything abnormal in this? SO PLEASE DON’T DISTANCE AWAY FROM A WHEELCHAIR. DisABILITY IS POWERFUL. RESPECT IT.

Note: this is a true incident. We did that just to see how many people feels this is their story and how much they are insensitive to their own people who are helpless and vulnerable at the entrance of life, without ever been given a chance to see what’s inside. All this is done just because they were embarrassed at their disability, awkwardness, their weakness, above all their helplessness. My salute to Nandini’s of this world who are silently building castles with the stones thrown on them!! INACCESS IS UNDERSTANDABLE BUT INSENSITIVITY…..????

        There might be “bugs” in my version. Of course….every program is meant to be re-programmed or re-engineered, if not, scrapped (humble example is scaling up from windows XP to VISTA to Windows7… now you got my point??)

Ok… ladies and gentlemen and disabled… here comes out my Golden Rules:

• A disabled is a disabled, no matter how much you have achieved, people’s vision is never broadened beyond your wheelchair/hearing aid/walking care/any other ability aid you are using.
• Don’t feel bad when people doesn’t communicate with you, eye-to-eye. Dead corpses and disabled people are some of the sights, sensitive Indian individuals cannot digest.
• By being disabled, people either think you are too intelligent or too dumb (no offence meant for this type of disability). More people judge the later than the former. Remember the famous quote-‘ what people thinking about you is none of your business’
• Plan everything ahead if you are going anywhere. Be it whatsoever. If possible ask some able-bodied person to give you a P.I.R (Preliminary Investigation Report). Every disabled person is a V.I.P (Very Imprisoned Person) in India… Miles to go before to become VERY INDEPENDENT PERSON.
• “DISABILITY” and “LIABILITY” are synonymous words. They also rhyme alike. So disabled workers… If you are a lady, you are a liability. If you are a gentle man you are liable to take care of the family because they have invested on a liability many years to turn that into an asset.
• If you are employed, feel blessed. Never aspire for promotions. If you are not, try hard to get one- don’t compare with normal individuals in this process, even if their normalcy doesn’t count in the job.
• Don’t just go by the word ‘Inclusion’. That is meant for the policy proposals and HR policies.
• Try to be happy all the times, despite your hardships. Because at least there should be some invisible difference between you and normal folks. Don’t take the smile away from your face.
• Don’t complain too much. Because complacency is everywhere.
• Remember… parents/ spouses/ care-givers may or may not have a choice in not having you, but employers/bosses /society does have!
• Trust me, life is a rat race. Simple understanding is you are a four-wheeled rat. Deal smartly, otherwise you will be rotten and forgotten
• Lastly, when opportunity knocks at your door, Push your wheel-chair harder. Don’t look for help, Its always arrives late, when you no longer need it.

So friends…here are some of the rules. Who knows I may come our with version 20.10 in year 2010? Good Luck in chasing your dreams on your wheelchair/walker/ability accessory

When you say about your marriage

One can feel inside the heart

Glowing with fondness of exotic affection

It’s almost marrying a country,

Their traditions, their values

Which are so alien to you…

Where have gone all the time

The poring over the books

The effort to learn and adopt

To love and be loved

From the corner lands of India

The gullies and chawls

The mud alleyways.. unknown routes

The villages and smiles..

You never seen on any GPS

Trying to find new people.. The forgotten friends…

They say ‘sita’ is great.. She went unquestioningly to forest

With an over dutiful rama..

I feel every woman is great who made

A foreign land her own.. Trying to emulate

Their systems and methods

Just for one thing in return… their LOVE

Wrapping in saree.. salwar… just to be one of them

Oh! Memsaab! You are wrapping all of us

Enticingly forever.. in your charm and love

By just sheer affection!!

Ohh! I feel great just about thinking them

Rebecca’s,philine’s,christina’s of the world…

What’s in a name????????

When your soul is Indian?

The compassion you show towards problems

The effort you put to reach out hearts…

With smiles.. Travelling miles..

So many things you did for us..

For poor souls of love and affection

For people who don’t know how to express themselves

The haves and have not’s!

We may become an memoire..page after page

But we are wafted in your kind aroma of love!

The color of your skin don’t mean anything

Before your kinship for humanity!

We journey forever to see goddesses

A one-way street to attain nirvana..

Why don’t we worship woman who

Made a foreign culture their own..

Trying to learn attire and values..

Blending the best of the both worlds!

Oh! Mem Saab! We agree that

Marrying an Indian is like marrying India..

We feel great that you are our daughter

Just born in a different soil….

You very well know the saying…

A daughter is a daughter ALL HER LIFE!

(Dedicated to all foreign woman who married an Indian and brought their humanity as a DOWRY)

What’s death anyway?

Is that happens when a person is no more?

Is that we stop thinking about a person

So natural it is

So final it seems

Everyone knows… but tries to escape

The thought of death

For some it’s painful

For many it’s over before they knew

Organs of life…. melting slowly

So many breaths in to one

Changes whole environment

In to unknown territory

People coming and going

Smell of anti-septic still in nostrils

Waking us up to harsh reality

Cold death

Leaving numb minds

How hard it is to wait for?

Certain death in an uncertain time

Every time it comes

We think it’s untimely

Some more time please..

We ask our almighty

Some time to live, love

To give everything

Positive and negative

Remembering a book titled

“who will cry when you die??”

Is it vital for dying person?

He is busy in business of dying

Getting delayed by modernity’s of life

Jumble of words… confusing

All hatred melting into one

Prayful determination….to my thee!!

Liberation of soul…

Into this eternal universe

Let anyone and everyone die

With the same bliss as they enter

With smile.. bidding adieu to loved

Let them have a graceful exit

As graceful as their entering the show

Oh! My friend….Are you alive?

‘Coz we are thinking about you!

Are you dead?

‘Coz we can’t see you anymore

Ashes to ashes…. Dust to dust!!!

saipadma@gmail.com

on 16/10/2009 @ 6.16 PM

The inherited life…

Generations to generations

Changing faces…same values

Volumes can be said…about lost values

Fighting to come up in life ladder

Of fame…money…Morals…peace…

Important being…

What society says about us!!

Living and dying in premonition

Donning several masks…

Of shy…Valor…Intimidation…

Successfully endorsing same fears

To our beloved sons and daughters!!

How we used to wish

For our sons and daughters

To be fearless..Courageous

Where their freedom is free

And head is held-high…

But… In the name of society

We breed xerox copies

Of our fearful values

Repeating rhetorically..Tirelessly

Same words and deeds

Similar actions and reactions

The basic basis of life

We have inherited and we are inheriting

Saga of inheritance of life!

Agony of routine life

“Don’t try to be different”

“Don’t try to be creative”

Protect your heritage….your inheritance

At the cost of your creativity and humanity

Because my friend!!

Indentify yourself…

You are indeed an inheritan

You belong to a globe of repeated values

With slight name changes

Let there be no questions

In the minds of society

That we are anyone different from

What our previous generation are!!

                                              Let you caught fire in web of expectations

                                              Let you breath fragrances of society

                                              Let you think in line with generations backward

                                              Let you live the glorious inherited life!!!

27/6/2008 saipadma@gmail.com

  You leaving me, behind,

  Long behind,

  I stay, beside you,

  In stillness,

  Holding your hands into mine,

  Unconscious or in coma, you may lay,

  I be there,

  With you and for you.

  You may speak not,

                                                           Silent it would be,

                                                           Me there to listen,

                                                           Understanding,

                                                           The language of silence.

( Written by PragnAnand 27/09/2009 – Sunday – 11 AM @ Vizag)

 “Nandini madam! Want to come for coffee??” colleague pradeep asked casually. Working next to nandini since 3 years, pradeep never made an attempt to know nandini really. He promptly says “hi and “bye”, never attempts to indulge in a conversation. They were colleagues, in fact contacts in an address book. Another name for e-mail forwards. “I guess no one wants to be friends with a person in wheel-chair” nandini remised.  It may be true may not be true… but one thing certain is that either people are too friendly or too aloof! Why don’t they behave normal?? She asked herself.

“Yes! I would love to have coffee!” she answered, coming to present, leaving her train of thoughts.

“Well then! I will bring it for you!”- Pradeep offered magnanimously.

“Why trouble? We will go together” nandini said matter-of-factly.

“Well… of course we can! “He said now slowly. Suddenly he asked again” you haven’t been to café’ in our office?”

“No, I didn’t have the chance, always had from espresso” said nandini.

“Ok, I will take you! “  pradeep offered to push the wheelchair. Nandini politely refused and wheeled herself happily, without even noticing the changing colors in pradeep’s face.

Nandini stopped in her tracks… pardon my language, in her wheels when she looked ahead.

Nandini looked at the steps despairingly-“I wish people would only have brains without hands and legs!”  She thought to herself shifting her weight in the creaking wheelchair. She laughed to herself imagining people with no limbs at all! Just a mass of body from head to torso which can fly!!  Nandini silently marveled at her own thought. She smiled big at her own thought!

“How do we go now? Shall I ask for help?” pradeep asked.

Nandini is helpless in her own thoughts. She never expected what she has been seeing there. There were stairs that are leading to café’ and those stairs separated in two archways with more steps, one leading to café’ other to a food joint. “Total eighteen steps” nandini mentally calculated.

Pradeep called for his friends immediately. Two came immediately, one slowly. They were all smiles. Nandini started counting. “It will be easy! Dear!” she said to herself. Four member team started lifting the wheel-chair. It took a while for them to do the logistics of the wheelchair transportation. Who has to be in front and who has to be holding the back side. It’s no less than the logistics management we do regularly in company- nandini thought to her.

Now the team started their journey of climbing the eighteen steps. Somebody pulled nandini’s hair followed by apologetic “ouch!! Sorry!!”.  Nandini plastered a smile on her face. Her heart is in her throat.Eyes fully opened. Seeing but not looking anything, their struggle in lifting the wheelchair, sweat covered faces, smell of sweat, their eagerness to help. At last the journey finished. One guy is rubbing his purple turned hand. Pradeep jubilantly ordered coffee. All drank with all smiles from nandini and started their descent.

Nandini offered a big “thanks” dazedly, trying to remember flavor of coffee she just now had. Profusely returned with a big “ you are welcome anytime honey!”

Nandini slowly started wheeling herself, pradeep in trail.

Suddenly nandini said-“don’t invite me again,  Pradeep!”

Pradeep immediately said- “ why madam! It’s no sweat” mopping his brow.

Nandini understood. A point well taken’- by her wheel.

I want to write about mother…

Not mine or anyone’s

But about a mother… definitely not mother earth…

When I want to write

I have so many things…

And again I remember my amma…

She reminisces about a family

A busy family indeed… wants to build a home for Mom

All the time… they want their mom to be in good home

A home of all comforts… they always vow to do that

When they come home tired and exhausted

They vow to do it tomorrow…

A home for mom is never a reality!

She is always home but she owns nothing.

Well… I wonder what I am trying to say…

Ok… let me do it this way…

Mother of a disabled child:

Always at the threshold of confusion and comparison

The do’s and don’ts of motherhood

Wishing to deny disabled child’s existence

Too painful to do so

Often confused and confiscating her emotions

Fighting always with relatives

And not-so relatives

She is a fugitive of her own thoughts

Too many expectations

Too many set-goals

She is in a silent race held by society

A race with no wins… a race with no one

Trying to make her child NORMAL

Always comparing notes

Guilty of her child-birth

Guilty of her own thoughts

Stereo-type images of success

Always bearing in mind

Striving hard to make her child NORMAL

Not thought of making the DISTINCT

My dear mother!

When will you stop worrying?

About my life, my marriage, and again my life

I am not a super human

Make me distinct

God has given me to you

Because you are brave!

Don’t be in a craving of normalcy

Please don’t expect for miracles

And create debacles in life of your ABLED child

I love you so much!

Please love me unconditionally AS I AM!!

saipadma@gmail.com