A DAY in my life working in APAAR- 4 days actually- 

( I wrote this Nov 14. Three weeks it took to post this . That is the summary of the situation . Read for details if you wish. )

“ There comes a point where we need to stop just pulling people out of the river. We have to go upstream and find why they are falling in the first place.”

—Desmond Tutu

Monday : I signed my name 75 times. No kidding. In one sitting.  To file a court case against our vehicle’s manufacturer. It was their operating manual I was acknowledging. For social justice, we are suing this manufacturer’s agency for swindling us on more than one occasion. And multitudes of others are harassed this way I am sure. So we are determined to sue.

G’s mum calls: I hear her out. Her husband has been crying. A neighbour curses and abuses them when G screams. There is a new sarpanch elected in their village. I promise to be there in two days to ask for his intervention. G is having daily seizures she answers when I ask. I find out (after three messages and photos on whatsapp with his sister) that is getting less than half his seizure medicine dose. G has not had an outing in very long. By outing we mean leave his home’s premises to be outside. He screams when taken out his mother reports. 

Akash’s mother calls me at my request. I tell her we are appointing Akash as an assistant in Apaar and he will receive a small salary. My main goal I tell her is to get into the mindset that Akash can be a livelihood generator. We have to place him in a salaried job outside APAAR. 

I have been struggling to write receipts to donors. I give up and wait for our now part time manager.

Tuesday: The special educator who applied for a job at APAAR  withdrew when his current employer, a corporate therapy centre offered him a raise of Rs 5000 simply not to leave. He had started negotiating his pay check with us before interviewing. 

My response :“We are not a corporate therapy centre. We believe in holistic healing. We offer respite, outings , jobs to the specially abled.” Our manager squeezes in an hour after his new job day to keep helping us out. Our crutches are the genuinely concerned. We are grateful.

Capitalism is killing APAAR. Like hospices are closing in the UK for lack of funds. 

Must plan staff meeting for training- we have two new staff. Must prepare training modules for such employees with no experience in special education. They are our working future. 

Wednesday : I spent nearly an hour at G’s home. His mother is upset and I listen out the neighbour’s story from her. G is excited to be out in his wheelchair, and we linger in the lanes as he is greeted by ladies who know him. I pluck two flowers from the roadside. G smiles. Later I meet the new sarpanch and request village volunteers to help haul G into wheelchair and “walk” him in the neighbourhood. Next I go across town to the care home we are training staff in. They have printed photos of our outings, but there is still no notice board to put the photos on. I call the chairman who says they will be send a notice board.  Not happened yet ( Dec 10). Rajan has good news- V ’s parents are going to start occupational therapy in a local centre .

Thursday:V’s mum calls. She has not yet got a time for the occupational therapy in the local centre. V is 18 year old after all. I call the therapy centre- the coordinator is away daily to Ludhiana for their upcoming centre there. He says four times in one minute that V ’s hyperactivity prevents therapy during regular hours as smaller kids’ parents could be alarmed. V’s mother is suffering I insist, we have no occupational therapist.  His psychiatrist never gets in touch with rehab professionals (us). My letter by email to the Indian Psychiatry Association months ago regarding this silo treatment method ,which is failing miserably, went unacknowledged. 

I call V’s mom back. V has been declined at special schools and a residential facility. We are too short staffed to manage a hyperactive teenager. Mom says they missed their Ludhiana psychiatrist appointment. I offer a Ludhiana centre where there is a psychiatrist plus very likely an occupational therapist. She says they cannot go to Ludhiana. I offer respite if Rajan is here Saturday. Vansh can spend an hour in APAAR’s playground. 

But Rajan does not know his Saturday work schedule until Friday night. It is like a primitive madhouse the work scene in this city. I have a feeling in medieval ages it may have been better. Employee rights to know days off in advance to plan their life. 

I prepare an Instagram post congratulating Akash. The last post was three months ago. (People have insta posts daily or more often at times.)

Tomorrow is a holiday for Gurpurab . I invoke the great guru’s name. To me Guru Nanak Dev ji’s favourite trait is his indefatigability. He walked as far as Iraq west, Nepal east, Tibet to the north. He was the most travelled man in the world then. But I will concentrate on his indefatigability. I need the Guru’s wisdom to keep going , swimming upstream in these rapids!