Evokation - Autism for Help Village Project

The Autism For Help Village Project Evokation:
THE INTRODUCTION
I believe mankind's future depends on how we treat differently- and specially- abled people, as to whether we will flourish or perish.
"Where there is no vision the people perish - Hosea/OT."
The PLACE I will “evoke” in is India, most probably in the state of Kerala or Karnataka; more specifically in the close vicinity of Trivandrum and/or Bangalore, the capitals of these states. This is because I know the language and my people in Kerala, and have built up a fund of good will in Bangalore. Ideally I would choose a place near Bangalore but sometimes one can’t choose, so somewhere in Kerala would do as well. If both these places do not welcome the idea, or try to combine the notion of an autism village with that of a mental asylum, or express any form of resistance, I may look elsewhere in India. However, I believe that if we start with enough land – at least one hundred acres - but also in a small way, and work with children in the beginning, the locals/natives (including myself) are unlikely to offer any resistance. I want to start my evokation by considering possible challenges, and how I will overcome them, so I want to say that at the outset of the project that I will have meetings with local community leaders, and explain to them what I am doing and also about the resultant benefits for the community, to smooth and pave the way for my venture to succeed. Even after my project is up and running, regular local community participation will be eagerly sought after, through weekly meetings, planning sessions, etc.
A point I need to address right at the beginning is whether my project will do more harm to autistic people than good by supposedly taking them away from main view into a sheltered form of existence. My reasoning is simple on this count: the autism village will not be an isolated place but an open-gates project, with daily and constant interaction with local, state, regional, zonal, national and international people. There will be plenty of activity, and interactions. The only difference is this offers the autistic people an ecologically and environmentally safe space that can be home for them in a larger measure than a family's house would be a home, so that they can not only strive but thrive.
The community will be primarily humanitarian, looking towards the present and future well-being of all autistic peoples, connected mainly to both aestheticism and science in its outlook, but it may also bear the imprint of the work of people like Jean Vanier and Bede Griffiths. It will be called The Autism for Help Village Project. The name means that autistic people not only need help but also help us first just by being who they are.
The institution will probably be my own temporarily, to begin with, but I will collaborate with trusted and qualified individuals, friends and groups—including colleagues from Evoke, and with all the various groups already working in the field of autism, in India first and then abroad. My vision starts from and with South India, spreads through India to Asia and expects to work in equitable partnerships and in tandem with other places from anywhere in the world depending on:
a. if these places have only little or no help since I want to address need
b. the level of research and help they need, or can offer, and vice versa.
I would need at least 100 acres of space, I think, for this mission to make some sense, geographically speaking; if not at the outset, eventually. Maybe in the beginning I could start much smaller with just ten, fifty or seventy-five acres, since in the first phase I only want to set up a few things like a school and a farm. Later I would expand to residential capability, hospital, medical shop and finally definitely to an orphanage, a vocational training centre and/or college and an old age home. If possible, I would like to have the option to expand to 1000 acres, to include all needed facilities and grounds.
Virtually, I will use all the existing or developing popular-use computer platforms that are of any technological account to help my dream place in efficient running. I do not think any means too humble or too great for such a venture, as to be left out of it.
Technologically, the space I envision may finally become global if things like tracking and tagging become a part of the lives of people on a large scale. Initially, it would be more compact, technically and technologically speaking, concentrating on basic essentials like power and water and transportation sufficiency and virtual necessities like good communication facilities of which the internet would be on top of the list.
I would need the help of many experienced collaborators and entrepreneurs because I am basically only a visionary, but since my particular vision is not specifically shared by anyone in EVOKE as far as I know, I’ve decided to present a solo Evokation.
The Cause: It all started with my discovery that my son was autistic. There are decisive moments in one’s life, like meeting the resurrected Jesus at Damascus was one for Paul and being asked to get off a train in the middle of nowhere was one for Gandhi when he was in South Africa. Being treated as an “untouchable” was what helped B.R. Ambedkar to realize what his vision should be.
While trying to help my son, I found that no one in my place – Trivandrum - knew much about autism, including me, and I came across both parents and other children like my son, and found that they needed help as much as I, my wife and our other children did.
Help is not easily available for such kids in a place like India, especially down South. It is either:
a.non –existent or
b. too costly, or
c. found in too few places.
The challenge can be stated thus – more than 1,60,000 people (one lakh, sixty thousand, or one hundred sixty thousand) in the USA alone are now labeled autistic. The exact number across the world is unknown but high, and the number in India is also unknown but rising rapidly.
They need more from society – more in terms of input, and more in every sense of the term. I believe the appearance of autism in such large numbers, which is a recent phenomenon, is directly connected to:
a) the environmental and ecological degradation of our quality of life and nature ( the presence of heavy metals in water, mercury poisoning etc.) brought about by man after the rise of the industrialized economies,
b) our modern lifestyle (including medicines like vaccines, - faulty batches {there is very little screening in places like India where anything can be bought and sold over the counter in the black market}- the use of steroids during the time of pregnancy and the presence of psychological factors like stress) and
c) of course, genetics, the prime cause.
In a sense, obscurely speaking, autistic people are the children of the lesser gods that we are, and yet better than us in the happiness that they give us. The children are better than the parents in this case, doubtless. There seems to be no one cause for the autism spectrum which I refuse to call a disorder, and since it’s a neurological 'disability' or wiring that makes it a complexity whereby a child is ahead, backward and static at the same time in terms of "growth", not to mention that every autistic child is different from the other that gives rise to the autism “spectrum,” there is no one solution and seemingly no complete, perfect cure; although occasional breakthroughs and recoveries or healings are also reported giving us gleams of hope, at least in a trickle of individual cases as of now.
THE IDEA: These peoples need teachers who are specialists, therapists, psychological counsellors, parents who are given special training, support and education, international, governmental, regional, zonal and local help, spiritual help, help from parent groups, autistic support groups, developmental disability groups, humanitarian help, social and educational networks, medical networks, donors, dentists, pediatricians et al…
How does this tie in with environmental and ecological concerns? Isn’t this merely social entrepreneurship, engineering and innovation?
It ties up with everything.
My start may be closely-focused, but it can exponentially expand to help for all autistic children and adults, to the differently- and specially- abled of all sorts if they too catch hold of the vision, to all the caregivers of this community and finally to a big picture question.
If this is a new kind of ‘scourge’, since it’s not exactly an epidemic or a pandemic, how can it be stopped? Can genetic research help? Gene mapping may give us the clue as to how children in the future can be born without autism. So encouraging research for that would be important. I believe it can. So can scanning. Prevention is better than cure. Medicines can help too - so research on finding a medical cure, plus palliatives and other drugs must be encouraged to continue in indigenous and allopathic fields. But what to do with and for those already autistic for a lifetime? This is my big picture question.
Obviously, Hitler’s solution is not the answer.
For such children to grow up healthy, they need healthy food, vitamins, proteins, medicines, exercise and many other things. They need herbal medicines too.
Producers and farms of this kind, producing this kind of food, exist in USA. They produce GFCF food.
Not in India, not many yet.
The worst case scenario: Think of a child born autistic in a poor Indian household living on 2 dollars a day, a worker's or a labourer's child, as we were asked to imagine in an exercise on Evoke. Let us say he, rarely she, is the only child. Autism affects males more than females and comes from the father, if genetic. Let me tell you the ratio of expenditure, ideally speaking. The man would need 1/4th, the woman 1/3rd and the autistic child the rest of the money if s/he is to get any help. 2 dollars is ninety two Indian rupees at present. If you gave the man 23 Rs, the woman 30 Rs and the child 39 Rs what help would the child get? The actual answer is Nothing, in today’s world.
The food and other products, services, side products and crafts, produced in such a farm, has to be green, eco-friendly, environmentally non-hazardous and healthy and the energy/power for such farms sustainable and renewable. Water must be harvested. Costs must be minimal to be effective, which is the main thing as always.
The food and any other products - aesthetic crafts, art shows - , such a commune would make or create is not only for them but everyone, since even if they need this healthy - maybe primarily vegetarian and herbal (ayurvedic)- food, any surplus can go for others, especially the poor. Not only that, the food can also be bought by everyone in society , where it can perhaps be sold at a higher price to some rich customers, as Namdhari’s does, to ensure breaking even or hopefully even make profit, since the first consumers should be the autistic children and their families and they should not be deprived of it due to cost.
My project could not work as a non-profit therefore, I think, unless it has extremely powerful financial backers. I need to take further thought on this aspect.
To start a school, a retreat centre and a farm or a place or space where autistic people can be helped in every way they need help, including enabling them to be mainstreamed as far as possible, is my dream. For this I would need, first of all, arable land-- with water, power or energy, modern communication systems and farmers, cooks, and many other kinds of helpers. The community would be primarily agrarian and self-sustaining, hopefully.
This would also lead to work opportunities for the local population as well as countless possibilities for networking aimed towards employability of different sorts with autism groups, autism specialists, scientists, educationalists, doctors, psychologists, artists, designers, architects, pharmacologists, environmentalists, ecologists, pharmacists, governments at local, state, national and international levels, collaborators, innovators, entrepreneurs, genuinely spiritual people etc…since what I really want to move towards is an AUTISM VILLAGE. I would build the village on the lines of Roger Dean's willow water project, Sabeer Bhatia's nanocity and Vinay Gupta's hexayurt project etc... as an semi- urban, semi-rural resilient city/community.
The village could also be a specialists and helpers holiday or retreat centre to generate further funds, limited to use only for empowering visitors and the families of the autistic peoples. The latter, especially, could come and unwind, relax etc. Over the years an old age home for the parents, if widowed, and a home for autistic children and adults who are orphans or abandoned or those who perhaps cannot be looked after by their parents in case of disability or such other unforeseen eventualities could come into existence. I envisage at least one geodesic building for a school, a vocational training centre and a mini-university, a medical research and a publications- cum-library area, with one section of it to deal with the food produce administration, another with farm administration, another with administration of the retreat centre, another with that of the school and the other organizations like the vocational training centre etc. Each section would be added in as the vision unfolds in actuality. The farm could also have horses and a swimming pool for aqua and equestrian therapy, a playground, a stable, a place for the horses to run around in, a massage and yoga or gym(health fitness centre), a toy-land for social integration, a big restaurant, a different kind of food retail outlet, a different kind of medical store and many other things. A hospital and therapy centre for ABA, VBA, psychological counselling, speech therapy, therapy in communication techniques like PECS and sign language, behavior modification therapy, pharmaceutical research, dental care etc, would be a must because these peoples need a different kind of medical help from others. I will expand on my architectural vision after taking more thought about it, later.
The money: Without despising the day of small beginnings, I would use any and all money raised as efficiently as possible, or, if feasible, invest it with some agency (matching donor funds through Global Giving, for example) that would multiply it for my project; and, then, I would think of working on this self same proposal at a deeper level by approaching appropriate sponsors, philanthropists, groups or organizations like the World Bank who can fund the entire project in a much larger way.
I have an innovative idea which is based on “the power of one” and is about crowd-funding and micro-gifting which could raise a massive amount of money for this entire project if proper planning is done in advance and proper advertising and publicity exposure is managed. The fundraising idea is simple, to get everyone on earth to give just one currency note toward this project of ‘the power of one.’ An Indian would give a rupee, someone from the US a dollar etc. After conversion etc., even after deducting costs for getting this fund raising drive to work I feel I would have enough money to buy some land, and start a small school and a farm. From then on, if I can harness the power of social networking and innovation, engineering and entrepreneurship correctly, much of which I learned here, I can bring in the rest of the funds too.
Fundraising projects like music shows or other benefits would also be considered.
I do not think of this project as one that only takes. In return it gives us the happiness of these people in ensuring their welfare and also as it becomes self sufficient it will generate income in various ways throughout the future, ways including the farm produce and the other products the autistic people will eventually make, so that the end will be change for the world and a better future and some form of earthly salvation for autistic people to whatever extent it lies in my power to bring it about which are aims I hold in common with UEvoke.
My vision is long term and the village will have open doors so these children are not isolated and I am ready to wait for it to blossom and grow into a force to change the cartography of the future, however long it takes to be fully realized. As part of this, I would work into this long term projects issues of expansion - setting up centres elsewhere - and also issues of training future leaders who would carry on the legacy with the freedom to change it to suit change that will happen around us regarding research etc.
The budgetary and legal aspects, aspects of administration regarding forming a 501©3 trust etc., and groups and individuals I may collaborate with need to be worked out in more detail. I would also require legal assistance to work through bureaucratic hurdles and governmental requirements, licensing, etc., which are large challenges in a nation the size of India.
However at present I have decided to approach for help:
1. http://www.autism-india.org/worldorgs.html
2. http://www.urgentevoke.com
3.http://www.communicationdeall.org/
4.http://srishti.ac.in/
5.http://www.autisminternationalfoundation.org/autism-funding-Intl.htm
6.thelandofisrael.com
My resource persons will include all at the facebook group EVOKE Class of 2010.
P.S. My idea/dream/vision belongs to everyone. No copyright, intellectual property rights or patent required to replicate it.
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This project raises funds for
Phase 1 of project.
1. Buying enough land to contain the facilities and infrastructure needed to run a proper autism village. I would need a hundred acres to start with.
2. Building a school with adequate/cutting edge facilities.
3. Hiring teacher-specialists and autism therapists, autism-care personnel, autism experts and advisors, specialist agricultural helpers, cooks, administrative personnel etc.; and an architect and engineer, plumber etc to design the autism village. Income/fair wages to be paid to staff/employees.
4. Ecologically/environmentally sustainable and special-needs accessible grounds, school(s) and residential and administrative buildings, with grey-water capture/filtration (for gardens/grounds), perhaps renewable (solar/wind/etc) source electricity, available computer/internet capabilities, fans (or aircon if possible), cooking/refrigeration (and freezer for longer food storage), backup generator if possible, laundry and bathing facilities and adequate regular-use and special-needs access toilet and washing facilities as well. Media and recreational room/exercise and therapy facilities would be beneficial as well. Equipment for all offices, classrooms, medical facilities, food preparation, etc, and equipment for each resident, furniture, etc, should be provided.
5. Collateral administrative study exchanges (if possible) to locations in India, as well as Israel, Armenia, and possibly the US to study autism centers.
6. Money needed for setting up internet platform, web site, interactive parent/child site (for posting work, progress, needs, possibly chat or pictures/video/skype chat)
7. Fees to pay for setting up organization with lawyer and chartered accountant, engineering, educational and farming and architectural advisors and technological personnel and government, getting adequate resident-transport vehicle, smaller administrative use (for medical supplies, official visits, etc) vehicle, therapy bikes or horses for residents, etc.
8. Adequate gates, walls, fire/emergency accessible roadways, special-needs accessible pathways, garages for any vehicles, special-needs accessible and advanced playzones/playgrounds, fire hydrant/emergency prevention/management training and equipment, safety glass and/or safety gates on windows (which meet fire safety/exit codes); emergency ladders, emergency shelter provisions.
9. School supplies: white boards, possible blackboards, tables, maps, globes, desks, chairs, markers, pens, pencils, paper, other supplies, computer/tech support/equipment, wiring, toys, athletic and sports equipment, therapy training equipment, shelves, cabinets, counters, lockers, benches, adequate windows, doors, room dividers, wheeled chairs or other necessary support equipment.
10. Shelves, cabinets, counters, pantries for kitchen. Adequate cooking, refrigeration, freezer, other storage/preparation necessities. Food preparation areas (full access, and with safety equipment/special needs access in one area); pots, pans, cutlery, measuring tools, pouring tools, blenders, toasters, microwave, etc. for sustaining food needs of village.
11. Water therapy/swimming safety zone/exercise/training areas, equipment and personnel if possible.
12. Adequate visiting/meeting furniture, facilities and grounds for visiting experts, families, other groups.
13. Establishing a productive teaching/therapeutic/sustainable (organic) GFCF farm, composting pit, grey-water reuse zones, storage area for tools, harvesting equipment, drying or processing equipment, if possible.
14. Linens, uniforms, tee shirts, aprons, pillows, mattresses, bedding, adequate seasonal clothing and/or protection (rain gear, etc).
15. On-grounds delivery/conveyance equipment and adequate paths for wheeling carts, etc. from one location to another.
16. Radio and telephone communications, music room, television/media room.
17. Safety monitors onsite, in rooms, at entrances/exits. Sound, video, and generator backup as possible. Fire alarms, carbon monoxide alarms, smoke alarms, motion sensors, defibrillators, and emergency equipment as necessary/possible.
18. Lighting and lights for all facilities , including emergency generator etc.
19. A medical store/dispensary on the premises with medicines and vitamins etc. for autistic people, specially stocked and pharmaceutical advisor and personnel.
20. A Restaurant for residents, staff, guests, special occasions, etc.; ideally would showcase the produce of the Village gardens and the culinary skills (even if at basic levels) of specially-trained residents, as well as hired chefs/staff.
21. A shop selling local arts and crafts etc, created in the Village, and perhaps in cooperation with local artisans from the surrounding communities…
22. A shop selling all goods needed for inhabitants, workers and visitosr, plus the extra produce, fruits, juices, GFCF foods, and other foods/baked goods from the farm and restaurant.