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On Autistic Pride Day, Here’s Why Your Awareness Matters

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By Kimberley Fernandes:

At 3, Sparsh Gupta would cry a great deal of the time and was often frustrated. Being completely non-verbal by the time he was 38 months, made his parents contact the local paediatrician with a heavy heart. Though he presented symptoms as early as 19 months, it was during that trip to Dr. Rastogi’s clinic, that Sparsh was diagnosed with autism. His parents, Kabir and Seema had never felt so helpless — questions like “What could have been done to ‘prevent’ this ‘problem’”, “Could anything be done?!”, “Why us?”, “Why Sparsh”, “What next?”, “Will he be able to live a ‘normal’ life?”, “What about our unborn child — will s/he be autistic too?”, and many others along similar lines kept mushrooming.

4146730230_b3a38326a2All too often, we are faced with questions like these — What could have been done? What should be done? — And there aren’t enough solutions, or “right” answers. In my opinion, much like social stigma, the root cause of there not being enough solutions (in a sense), to questions like these, is owing to the lack of awareness. Just a few weeks ago, people globally celebrated Autism Awareness Day on the 2nd day of April. But as always, families like the Gupta’s and others within the autism community had debates as to whether “awareness” was the right terminology, and if “acceptance” or “equality” would be more appropriate.

For people who believe that the ‘outside world’ should be ‘aware’ by now — you’re probably living in your own little autism bubble and are wrong. I say that because to people like you and I (people who know someone who is autistic), it seems as though autism is in the news almost every day. This is because we are specifically looking for that news. People like Sparsh’s parents probably have a Google news alert set to inform them about all the autism-related news of the day. On Facebook too, many friends may be in the autism furrows, so our newsfeed is likely to be flooded with autism stories every day. These are the people who are obsessed with reading blogs written by parents or teachers of autistic people. To these people, the world may appear to be drowning in autism awareness.

That is to say, that one is only reading about autism if one wants to read about autism. For a typical person who tunes in to the evening news every day, checks in to Google News every now and then, and reads the newspaper daily, is probably not as aware about autism. When mulling over the types of and the frequency of autism-related stories that hit those sources weekly, it is clear that they are few and far between. The types of autism stories that do make the mainstream media usually fall into the following categories:

1. “Feel good” or inspirational stories about “regular” people showing an act of kindness towards autistic people.

2. Autistic children doing fantastic and extraordinary things.

3. Theories about causes and links to autism.

Being a student of Journalism myself, I am definitely not against any of these types of news stories. Each one is valid since they show an aspect of autism. Having said that however, reading about 4-5 stories like this monthly doesn’t make one “autism aware”, in my opinion. Having a day dedicated to autism awareness sort of forces mainstream media houses to cover a few more such stories; hopefully, some of these will be different in the sense that they will not fall within the afore-stated 3 categories.

It has been over a decade that the Gupta’s learned about Sparsh’s “condition”, and they face problems regularly. Take for instance the time Seema took Sparsh to the supermarket with her. 14-year-old Sparsh is really tall for his age and could easily pass off as a lad of 18. That is, until you look closely and see that his expressions aren’t “quite right” and he refuses to make eye-contact with anyone who tries talking to him. In Delhi, the first compartment of every metro is reserved for the female passengers and in some, there are guards stationed to chase away travellers of the opposite sex. Seema got into the first compartment with her son, only to be chastised by the guard there who told her to take her “man” to the general compartment. A very flustered Seema tried reasoning with him by saying that Sparsh was her son and she couldn’t leave him alone, but to no avail. The guard refused to listen and pressed a button to prevent the train doors from shutting. Sparsh too grew fidgety and escaped his mother’s grasp to try and walk away (he didn’t like it when people yelled). Getting really impatient, Seema had to yell at the guard to make him stop talking. “Mere bachche ko bimari hai. Main uss ko akele nahi chhod sakti! Aap ko doctor ke kaagaz sabut ke liye chahiye?!” (“My son is suffering from an illness. I cannot leave him alone! Would you like to see the doctor’s papers as proof?!”) This left a very red-faced to guard allow them to stay in the ladies compartment, not before brushing them away hurriedly.

The afore-stated is just one of the many instances Seema, Kabir and other parents of autistic children deal with on a regular basis. To them, the problems that parents of “normal” children face, (my 6 year old is failing spelling; my child is 4 and still has to wear a diaper to sleep; my daughter stutters while talking, etc.), are almost minuscule. However, for one month a year, especially on one particular day, people like you and me can try to force some degree of “awareness” down the typical world’s throats. Slowly, but surely, they (the “other people”) will become more and more “aware” of the problems that families of autistic kids (and autistic kids themselves) face regularly, and families like the Gupta’s will not be asked mundane questions like “How do you do it? How do you live like that? Isn’t it hard to deal with the fits of rages your child often has?”, because people would be aware. They would be aware of how things are done, what can be done, how they can help. Even if we need to “force it down” people’s throats for them to understand. During April every year, let us try to share our own stories — the high functioning and the low functioning stories, the medical stories, the political stories, the inspirational stories. The good, the bad, the ugliest of the ugly. Let such stories resonate with the mainstream media and the masses.

Photo Credit: BLW Photography via Compfight cc

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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