“I wish to live in a world whereacceptance is not just thegoal, but the reality. I want to live in a worldwhere someone talking inthe deficit model ofawareness is regarded asuncomfortably out of touchwith how things should be.This is my world too, and I wantit to be filled with people whoknow that Iam autisticand fantastic, not that I“have autism” and that istragic. In my ideal world,flapping will be just as acceptable as smiling,earplugs will be a normal sight,AAC devices (Augmentative and Alternative Communicationdevices) will be commonandeveryone willknow how to converse with AACusers. In that world,neuro-diversity will bejust another way that people are unique,and everyone will agree thatdiversity is part of what makesthe world so beautiful”.
This is from a blog post of Kassiane S, an autistic rights activist,who herself is autistic. Kassiane was improperly diagnosed before discovering the autismspectrum at the age of 18.The words come from the heart.That’s what we want to achieve tomake the world so beautiful.
All along, the month of April is being celebrated as World Autism Awareness day.United Nations has declared April 2021 as the month of Autism Acceptance.Yes, awareness is the first step towards acceptance.Why is it critical now to have this shift?In United States of America, prevalence of Autism has risen from1 in 125 children in 2010 to 1 in 54 in 2020.The prevalence could be more or less similar in our countrytoo, may be with few percentage difference here andthere.
People with differences are born different.Are they not equal citizens of this world?The way the worldevolved, and the way the majority in this world lookat people who are ‘different’ is sad.Come on, letus accept them as part of our society.Not just lip service, but be part of the movement.
It is a fact that,unless there is someone affectedin the family, “why should I”attitude prevails.First be AWARE ofthe ‘difference’ and then ACCEPTit as part of societyand be part of the process thatenables ‘inclusion’.
Awareness is easy, but acceptance requires hard work.
Acceptance and awareness comes from vastly different mindsets.
Those who are aware “Tolerate”,but those who accept “Embrace”.
Becoming awareness is more or less one time thing.But acceptance is a continuous process.
Awareness and acceptance canbecome reality, only wheneveryone interactwith the ‘different’ ones and understandhow they react to situationsand how they lead their life.In spite of knowing aboutopportunities, not manyare willing to get to knowabout the ‘different’ ones.That’s thesad state of affairs in ourworld.
Humble request..We vociferously discuss‘political differences’ and‘religious differences’.. We don’t even missan opportunity to judge /accuse even friends whothink different politically and do differentreligious practices.Why don’t we find some time to thinkabout people who are borndifferent and struggle tolive in this world, make use ofopportunities to interactwith them and accept them aspart of this beautiful, diverse and inclusiveworld.
[Most of these quotes are taken from Kassiane’s post].
Navratri days were always colourful.It was very special festival for us in family.During childhood, we use to have special decorations and pujas every day at home with tasty Naivedyams / Prasads.Over the period of time all the decorations got reduced, puja and Naivedyams remained, and more music got added.We use to sing bhajans every day evening, which was led by my mother. These days, the music got confined only to the Vijayadasami day, after the Saraswati puja.
This year it was very different.Lockdown days dampened the spirits of Navratri in general.Just a day before start of Navratri, Pratibha’s Sitar guru Smt Aparna Deodhar suggested that why not do a video series in which Pratibha and the guru perform together one raag a day.To include only the compositions and not improvisations.I got excited with the suggestion and did not realise the challenges ahead.We finalised the raags for each day. Teacher also suggested that let Pratibha wear Saree during the performance.These were sufficient for Pratibha to get excited, playing along with her guru, that too wearing saree. She loves wearing saree and these days not many opportunities for wearing saree.Wow! We all got excited.Awesome way to bring colours of Navratri back.So, it is going to be Navratri Navrang this year.
We all got into preparation to make the Navrang a reality.Some of the raags Pratibha learnt more than 3 years back, and she has not practiced them at all.We have setup a process.First make Pratibha revise the compositions in the chosen raag of the day.Once we get comfort with her playing, do the video shooting, of course Pratibha wearing saree.Once the shooting is over, edit it to remove all unnecessary takes and send the video to the teacher.Teacher listens to it and plays the same what Pratibha has played and sends her video to us. During that time, I get into creating a cover design for the video.Then sync both the videos, adjust the volume levels, place the videos side by side etc. to create the final one.Send the final video to the teacher, who posts it on the Facebook, and we share it on our Facebook timelines also to a few friends and groups in WhatsApp.This was the process we followed.I was spending a minimum of 6 hours a day for all my tasks.Most of the time was spent in two tasks, (1) revising the compositions that Pratibha has to play & then making Pratibha practice and (2) video editing.
After watching for couple of days’ videos, one of my friend commented that playing along Pratibha is a bigger challenge for the guru, as Pratibha has problems with rhythm and she misses beats once in a while and the tempo varies while playing, though less often. Matching that is not an easy task!!Such amazing support from a Guru, matching Pratibha’s ‘playing’ (with rough edges) is something which gave real “colour” to this Navrang series.I am sure, this is because of the bond that Pratibha and her guru share.
My wife Asha was giving all the support and encouragement.The biggest task for Asha was selecting sarees for each day, making Pratibha wear saree and all the associated accessories, and reviewing the videos in progress.Pratibha’s excitement was for two reasons: (1) Playing along with her guru (in video), and (2) opportunity to wear saree.After couple of days we realised about the colours associated with each day of Navratri, and decided to make Pratibha wear saree having the colour of the day.
It was a thoroughly enjoyable Navratri for us, for me fully engaged in music and video creation.The commitment by Pratibha's guru Smt Aparna Deodhar has to be appreciated, as she was there for any help all the time.For me it was a laborious task, but I enjoyed thoroughly.From us, myself, Asha and Pratibha, a big thank you to Aparnaji for making the suggestion for the video series and supporting it all through the nine days.
The response we got for these videos from social media were very encouraging. Here are the nine videos and at the end a link to the playlist, where all the videos can be viewed.
Day 1: Raag Bairagi
Raag Bairagi is also known as 'Bairagi Bhairav'. The equivalent ragam in Carnatic music isRevati. The time associated with this raag is morning 6 AM to 9 AM. This raag is supposed to evoke karunarasa. It is to be noted that many of the vedic verses and shlokas are chanted in this raag. It is said that the steep fall from Madhyam to komal Rishabh adds to the poignancy of the raag Bairagi.
Day 2: Raag Shivranjani
Shivranjani is a melodious raag and gathers strength from sadness. This raag is very similar to raag Bhoopali with just one note different, i.e. komal Gandhar instead of shudh Gandhar. Though the difference is very small, the mood the two raags create are very different. Shivranjani is considered to be a raag borrowed from Carnatic music. The time associated with this raag is midnight. Bollywood has used this raag for many popular songs that reflects sad mood. One example is "Jane kahan gaye wo din.." from the film Mera Naam Joker..
Day 3: Raag Hamsadhwani
In Hindustani music style, raag Hansdhwani is considered to be borrowed into it from Carnatic music. Time associated with Hamsadhwani raag is 2nd prahar of night. Hamsadhwani is a bright and happy raag setting a vibrant context for a concert.
Day 4: Raag Bhoopali
Raag Bhoopali, also called Bhoop, is a very popular raag. The equivalent of this in Carnatic music is ragam Mohanam. The time prescribed for this raag is again 6 pm to 9 pm, the first prahar of night. Bhoopali is a tranquil soft melody that fills up a new life force in the atmosphere.
Day 5: Raag Yaman
This raag is considered to be one of the most fundamental raags in Hindistani tradition. Kalyani is the equivalent ragam in Carnatic music. The time associated with this raag is first prahar of night, i.e. 6 pm to 9 pm. Yaman is full of grace and beauty, evoking a mood of devotion and dedication.
Day 6: Raag Malkauns
Malkauns is one of the oldest ragas of Indian classical music. The equivalent raaga in Carnatic music is Hindolam. The raag is said to have evolved when lord Shiva performed the Tandava dance. The raag thus evokes a feeling of vigour or Veer rasa. The time associated with this raag is 3rd prahar of the night, i.e. 12 midnight to 3 am.
Day 7: Raag Durga
This year, the seventh day of Navratri was considered as Durgashtami, hence we chose the raag Durga for this day. The traditional emotion associated with raag Durga is boldness and determination. It also signifies purity. The time associated with this raag is 2nd prahar, viz. 9 pm to 12 midnight. Suddha Saveri raag in Carnatic music is considered to be very close to Durga in terms of notes, but the way these ragas are rendered are quite different in both styles of music.
Day 8: Raag Bhimpalasi
Bhimpalasi is a very sweet and hauntingly pleasant melody. This raag is supposed to depict the sringara rasa (romantic mood). The time associated with this raag is 12 noon to 3 pm. The Carnatic music equivalent of this raag is Karnataka Devagandhari. Dhanashri ragam is also very close to Bhimpalasi.
Day 9: Raagsagar
Navratri Navrang was concluded with a raagsagar (raagamaalika), rendering multiple raags in one composition. The five raags are Kalavati, Rageshri, Chandranandan, Malayamarutham and Bhairavi. Kalavati and Bhairavi are very popular raags. Raag Bhairavi is called queen of melodies, which is known as Sindhubhairavi in Carnatic music. Though raag Bhairavi is an early morning raag, it is popularly used as a concluding piece in the concerts at any time. We are also concluding Navratri Navrang with Bhairavi, but followed by a short jhala in Kalavati.
Here is link to a playlist of all the nine videos.
This post presents all the posters I created for the Autism Awareness Campaign that I have run in social media in the month of April. Links to the narration of each poster is given above each poster.
I am concluding the “Autism Awareness Poster Campaign” today, 30th day of the campaign.All the major topics covered in this campaign are listed in today’s poster.Does it cover almost everything about autism? No.I could not cover all possible topics about autism in this 30 days campaign.The objective of this campaign was to share knowledge and my experiences about different aspects of autism and spread awareness.
Going forward I will create posters for some of the remaining topics. They would include Gut-Brain connection theory, Diet and Autism, Diversity and inclusion, assistive technologies, affective technologies for emotion communication, emotional intelligence (EI) and functional independence.But not every day!
Prevalence of developmental and intellectual disabilities in India is about 40 persons per 1000.This includes ’15 per 1000’ for Autism, ‘1 - 2per 1000’ for Down syndrome, ’20 per 1000’ for Intellectual Disability (formerly called Mental Retardation), and ‘3 per 1000’ for Cerebral Palsy.They are born differently and have all rights like any other person in the world.Isn’t it the responsibility of the civilised society to include them in all activities?Yes, there are challenges, but we have to address these challenges and make all possible activities “inclusive”.Be it education, work, or entertainment.
There are organisations in which developmentally disabled individuals are recruited based on their skills and aptitude.Recently, we (an NGO of which I am part of) were invited by an MNC to setup a cafe run by “developmentally and intellectually challenged persons”, in their prime office premise, with an objective to bring in “inclusivity”. The cafe is working very well, with good number of employees having close interaction with the “special” persons who runs the Cafe.This helps both sides.The employees are experiencing the diversity and the “special” individuals are becoming part of professional organisation and adding value.
Large number of NGOs and parents are working hard in running special schools, sheltered workshops, workplaces exclusively for autistic or developmental and intellectually disabled persons, and doing many innovative activities to spread awareness about autism.Many are working closely with various central and state government departments to create the right laws, to ensure that the rights and freedom of “special” persons are protected and they are supported in this world, where majority of people tend to become self-centric and lethargic to differently born people.Also, there are tens of thousands of selfless volunteers contributing to this cause. Salutes to all of them. Also, salute to the millions of autistic persons in the world, who are striving to live and enjoy life in a hostile kind of environment. Here are the links to all posts of this campaign in chronological order:
Concluding this poster campaign with a quote “Let’s stop ‘tolerating’ or ‘accepting’ difference, as if we’re so much better for not being different in the first place.Instead, let’s celebrate difference, because in this world it takes a lot of guts to be different.” - Kate Bornstein.
New challenges emerge as persons on autism spectrum move towards adulthood.When neuro-typicals themselves find it difficult to manage the teenage challenges, they are much more harder for persons on the spectrum.Three major challenges of teenage and adulthood that are strenuous for handling are managing puberty, independent / assisted living and matrimony.
Managing puberty is a huge challenge.Most of the persons with autism will not understand the changes happening in the body and how to be comfortable with those changes.Both boys and girls have their own challenges.During puberty, most people start to experience sexual urges. It is normal for children to feel sexually aroused.But for teens with autism-associated sensory issues, these new sensations can cause anxiety.Families need help from experts and doctors at this stage to manage this effectively.Almost all parents of persons with autism goes through this tribulations.
In an earlier post I had indicated that when the autistic children become adults, the main worry in the minds of parents is how are they going to live, independent or assisted.Having a “good” quality of life is what all parents would look for.In western system, generally children start working and live independently after they cross 18 years.Good number of autistic adults too move to community living and other shelter houses.The agencies that run shelter houses provide care giving services too. Many high functioning autism adults move to shelter homes and community living.In developed / western countries state provide some level of support for such community housing and care giving.
In India we are culturally very different.Here we want our “special” sons and daughters to stay with us.
The National Trust Act has provisions for modalities for assisted living of adults with autism and other intellectual and developmental disabilities. Not much push has happened in this direction. There are couple of privately run high end housing and full support facilities.I have seen couple of initiatives by few parents supported by schools /NGOs.They were failures.Some builders have come up with idea of a separate block for autism and other developmentally disabled persons, along with normal housing blocks.Parents can buy houses and stay. “Special” houses also to be bought.Difficulty is right care giving services, vocational activities and possible work opportunities.Because of such challenges, none of such projects have taken off, to my knowledge.
A group of parents in Kerala are working on a solution to this problem.About 100 parents together are creating a village, with facilities for staying, training for assisted living, skill development and activities to engage and enrich the beneficiaries.The concept is “each 100 child in the village having 100 parents”.It is a community living concept with common kitchen and common facilities for all families.We are also part of that project.Expected to start operational this year.
“Getting married” and having a family for autistic adults is a dream for many parents.I have seen few cases of marriages of autistic persons.It is not easy for many of them to manage themselves, then managing a family together is going to be a huge challenge.If one of the partner in such matrimony is Neuro-typical person, I think, there is a good chance of success in the married life.Here, at least one person understands the nuances of life and “married life”. If both are “clueless” in many real life situations and how to deal with them, it is going to be difficult.Few mothers of autistic persons have come together and started “inclusive matrimony” site, for parents to search and find suitable groom / bride.
I will conclude this post with a quote “Autism is about having a pure heart and being very sensitive… It is about finding a way to survive in an overwhelming, confusing world… It is about developing differently, in a different pace and with different leaps.”
