As I watch the new Netflix documentary, Crip Camp: A Disability Revolution produced by former President Barrack Obama and Michelle Obama, I realize thatthere is an urgent need for grassroot activism to support disability religious rights to pave the way towards greater equality. The movie highlights disabled summer campers who fight for the realization disability rights in 1970s, at the time when they were largely ignored by the state.
And does Indonesia need A Disability Revolution?
According to a study by Monash University, it is estimated that the disability prevalence rate in Indonesia is between 4% and 11%. There are several causes of disability, ranging from malnutrition, diseases, ageing population, natural disaster, and accident. Unfortunately, due to social stigma in the society against people with disability, the disability statistical figures may be underreported.
The Indonesian government has been actively involved in international convention by ratifying United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2007 and issued the law no. 8 of 2016 on rights of persons with disabilities to comply with human rights standards. But, at the same time the law faces some stagnate situation regarding improved well-beings of people with disabilities because disability prejudices are still at the heart of this tension.
For example, disabled children are less likely to attend formal education because of lacking inclusive schools. In public places, ramps and accessible information are not easily available. Zooming into the workforce, Indonesian 2010 census reported that only 26,4% people with severe disabilities were employed in formal sectors. This resulted in high rate of self-employment among people with severe disabilities. Many people with mental disability, such as bipolar disorder, have to conceal their condition for the fear of losing jobs.
A research found that discriminations against people with disabilities in developing countries, including Indonesia, caused a loss of up to 7% of Gross Domestic Product(imagine : what if a genius with severe disability like the late Professor Stephen Hawking had never been employed at university?).
Women with disabilities even suffered more from double prejudices, by their gender and their disabilities. What makes thing more difficult for disabled citizens is that, despite of some disabilities laws and ministerial decrees, they were poorly enforced. This explains the urgency of ending this discrimination from a social-economic developmental perspective.
As the largest Muslim majority country in the world, Fiqh (Islamic jurisdiction) for person with disability remains important to safeguard equal religious rights. As a non-disabled Muslim woman, being able to perform Islamic prayer (shalat) properly help me increase my mental wellbeing during this unprecedented time.
Unfortunately, there are still some Muslims who believe that disabilities are by-products of witchcrafts (sihr) or demons (syaitan) which can be healed only by involving spirits and enchanting some quranic verses. Further, in Islamic law per se, there is no specific term which can encompass all disabilities.
“Fiqh for person with disability is very important because the society has yet to accommodate special needs for people with disabilities in performing religious rituals. For example, how does Islam regulate the wudlu(ablution) taken by a man/woman without arms? Considering that Islamic law obligates that someone must wash one’s arm up to elbow during wudlu. And will the wheelchair be considered as najis(impure) inside the mosque?” said Mr. Bahrul Fuad, a disabled person and board member of AIDRAN (Australia-Indonesia Disability Research and Advocacy Network).
Mr. Ahmad Ma’ruf, the Disability Program Team Leader of Muhammadiyah, the second largest and most influential Islamic organization in Indonesia after Nadlatul Ulama (NU), even posed critical questions:“What if persons with hearing impairment wish to get married and say ijabqabul (Islamic marriage vows), will they use sign language? Because religious court has yet to regulate the sign language issue. And who has the authority to validate the sign language as “legally correct” in Islamic marriage? What if a man with wheelchair wishes to be an imam (leader of a congregational prayer)? Is he allowed to do that, given the fact that many people still interpret explicitly the regulation that makmum (member of a congregational prayer) must follow movements of imam? What if there is no accessible ablution facility in a mosque? Should a person with disability performs tayamum (dried ablution)?”
To address this issue, NUand Muhammadiyah issued Fiqh for person with disability and raise awareness of the public concerning equality for disabled communities. NU even collaborated with the Ministry of Religious Affairs to disseminate the Fiqhto mosques nationwide.
Fiqh for person with disability will fulfil civil rights of disabled community comprehensively, ranging from ubudiyah(religious rituals),muamalah(interpersonal relation), to sahusiah(public policy). This Fiqh will also protect rights of disabled women, as the most marginalized group.
To ensure the smooth implementation of the Fiqh, the government, civil societies, disabled people organizations, religious leaders, and experts of Islamic law should collaborate for accountable monitoring and evaluation. Regular capacity buildings for judges, teachers, and village officials should also be organized.
Finally, political buy-in through Perda(regional regulation)and guidelines should be issued to strengthen government officials’ commitment to enforce the Fiqh. For example, the Special Province of Aceh under Syariah law have regularly issued qanun(regional regulations subjected to Islamic stipulations).
Historically speaking, during the Umayyad Caliph era in the 700s, the Caliph Al-Waleed ibn ‘Abdul Malik accommodated health treatment needs for his population with disabilities through the provision of health care clinics within all his jurisdictional provinces. This idea was emulated by Caliph Umar Bin Abdul Aziz who hired support services workers for people with disabilities. This initiative resulted in social and legal impacts worldwide, in which a broad array of laws on disabilities were enacted.
In making public policy for citizens with disabilities, the government of Indonesia should not paint disabilities situation with a broad brush. Rather, Fiqhfor persons with disabilities must be taken into consideration seriously. Otherwise, there will be far-reaching consequences on well-beings of people with disabilities in the long run.
This Fiqhis a beacon of hope for future generations, to leave no one behind.
As put forward by a member of Crip Camp: “If you don’t demand what you believe for yourself, you’re not gonna get it”.
Tenzin Choezom – On turning her struggle into her power
Tenzin Choezom is a Tibetan refugee woman born in exile. Her life has so far oscillated between the borders of India and Nepal. She is also a graduate from Ashoka University and has a Postgraduate Diploma in Advanced Studies and Research (Adv. Major in Sociology and Anthropology). She has had a fair share of experience suffering from tinnitus for almost ten years and Meniere’s disease for the last four years. It has always been an endeavor from her end to spread awareness about the disease and create a more empathetic world for everyone.
Tell us more about the problem you are facing.
The prospect of suffering from meniere’s disease is not just physically debilitating but it rots your mental composure as well over the time. It is an everyday inner battle as an individual. But it gets isolating when that battle is not understood within the larger social setting. Unlike the people suffering from cancer which is very obvious, meniere’s disease on the other hand is a chronic invisible illness. A person with meniere’s hardly has any external visible symptoms and everything might seem normal except for the moment when the attack happens which can come at any point in time and is always uncertain. Imagine giving a presentation and you suddenly have a meniere’s attack. You are fully conscious but you have no control over yourself. You are literally spinning, losing your balance, feeling vulnerable in front of others and helpless with constant vomiting(if the dizziness gets intense) and tinnitus (ringing in the ear) which is there 24/7. Oftentimes, as a victim, instead of expecting people to understand what you are going through, you have to first deal with explaining your condition. This is a repetitive reality and it can get daunting because of the massive gap in knowledge of the disease within the community and the larger South Asian context. It is truly disheartening when people hardly acknowledge the existence of the disease as a debilitating condition of the inner ear and straight up say that it is just a mental condition when I try to bridge the gap.
When did your issue get diagnosed?
It was during the summer of 2018. I was all ready to kickstart the summer semester at Ashoka University. But the table turned when I started having consecutive dizziness for a few seconds in the morning every time before my 8:30 class. I was fully conscious when the dizziness happened but I had no control over my balance. My friends would often laugh at me respectfully and say that I was using this as an excuse to not attend the morning class.Whatever they said did not bother me because I was naughty in that way. I was a sleepy head in the first place and would do anything to even get an extra five minutes of sleep. In between the moments of labeling it as an excuse to not attending the morning classes to potentially thinking that I was weak to knowing that my blood pressure level was low, the school infirmary nurses gave me ORS (Oral Rehydration Salts) to drink. I drank it for the first few days but no change. Finally, I decided to visit the doctor at the school infirmary who turned out to be an ENT specialist. I owe a lot to Dr. Priyanka and everyone involved at university for always giving me immense support. When I told her about the incident and my past experiences with tinnitus only after she asked, she referred me to a bigger hospital. I went through different tests (P.T.A, MRI Brain, CBC ESR, S.VirB12, T3T4TSH) and that’s how I was diagnosed with Meniere’s disease.
What is the cure?
There is no cure or scientifically proven treatment till date but there are different measures that would help control/alleviate the symptoms. There are different medications, therapies that one can look at and it can vary for different people but as for me, maintaining a salt/caffeine diet really helps.
How are you helping other people who have the same issue?
I have always feared being vulnerable in front of others and being judged because of my illness. It has taken me a while to come to terms with it and accept it as it is. It is a part of me that will remain with me forever. But I have turned this into a purpose to make sure that no one has to suffer silently because of the gap in the knowledge. I hope that my story helps each one of you who are suffering out there to be courageous and open up a conversation with your loved ones and as envisioned, this is a start to bringing more awareness about the disease, empathizing with the individuals, finding the treatment for it scientifically and thriving together as a community for a better tomorrow.
What has helped you to cope with the struggles you are experiencing?
When you see everyone around you enjoying to the fullest, you do not even dare to ruin the moment by having a sudden attack. I had the hardest time accepting this and hence, avoided a lot of social gatherings. But trust me, people are more generous and kinder than you think. So, try a little every day to move past your fear and do what you have always wanted to do. The attack might or might not happen. There is a 50-50 chance. Do not let the uncertainty of attack define your life. Let it come when it wants to come and you will handle it gracefully. It is definitely nerve-racking and it might take a while for you to recover from the trauma of having an attack but you will see a brighter you at the end. It has been a work in progress for me everyday to get better with it. Seek therapy if you have the option to do it, talk to your friends and family, get your frustrations out and cry if you want to, have a balanced salt diet but most importantly, be there for yourself every step of the way. Because you can only understand the magnitude of what you have gone through. And do not ever lose your hope even when it feels difficult. I have made this far and I believe you can too. Besides that, reading really helped and has been so therapeutic for me. I would suggest you read ‘In Love with the World: A Monk’s Journey Through the Bardos of Living and Dying’ by Yongey Mingyur Rinpoche la. It has been a savior for me for the longest time and I still go back to it when I feel anxious.
Anything else you want to share?
To those who are suffering out there like me, I see you and can empathize with you fully. I know that it sucks to the core to always be positive when the disease drains your mental and physical energy but life goes on. Living with the fear of attack is the worst thing you are doing to yourself. I know this fact but it is still taking me a while to get over it. But I hope we can outgrow the fear of attack one day and truly live everyday to the best of our ability. I am always here if you need someone to talk to and let’s together create a better world to live for everyone. You can always write to me at tenzin.choezom[at]alumni.ashoka.edu.in Also, thank you to Vidhi for amplifying my story of struggle with Meniere’s and giving a hope to thrive for everyone.
COVID- a way forward with Sustainability & Biodiversity
Since the onset of the COVID- 19 pandemic, a new unprecedented situation has arisen many new challenges including social, health, sustainability and world economic issues. COVID -19 is a severe acute respiratory syndrome coronavirus II, first identified in Wuhan city of China on December 19, 2021 and until now this virus has reached its sparks to 218 countries and killed 3.9 million people across the world. It magnifies the everlasting impacts of inequality, batting the poor the hardest. Periods of fortified unemployment, global shortage critical medical and personal protective equipment including masks, protection sheets, gloves and medicines further afloat economies resilience by foster sustainable economic systems- low- carbon investment and green infrastructure planning. The G7 and G 20 ensure to finance least developed and developing countries in flattening the pandemic curve along with the extreme focus on sustainable resource development, climate change mitigation measures and fair economies.
Up till now 25% of plant and animal species are on the verge of extinction, therefore, countries should consider biodiversity in their COVID19 response and economic recovery plans because land use changes and wildlife exploitation increase the risk of many diseases by bringing humans and domestic animals closer to pathogens and disrupting disease-sustaining ecological processes.
The economy and human well-being depend on food, clean water, flood protection, erosion control, the drive for innovation, and more. More than half of the world’s national production relies heavily on moderate biodiversity. Thus, decline in biodiversity poses a major threat to society. As part of the policy to respond to COVID19, investing in biodiversity can help mitigate these risks while creating jobs and economic incentives.
Although government and business leaders have recognized the importance of green recovery, and their focus is now on climate change. As part of the restoration and environmental protection system, they should talk to each other. Many countries have taken comprehensive measures to protect biodiversity in response to their COVID19 policies. Examples of biodiversity measures include changes to regulations on the wildlife trade to protect human health, and employment programs focused on ecosystem restoration, sustainable forest management, and control of invasive species.
Analysts suggest that the amount of potentially harmful costs incurred as part of the economic recovery from the COVID-19 crisis far outweighs the benefits to biodiversity. Governments should take the necessary steps to integrate biodiversity policies into COVID-19 recovery projects, ensure that COVID-19 economic recovery measures support biodiversity without jeopardizing it, maintain regulation, and reduce land use. , wildlife, wildlife trade and pollution and attach the environmental condition to the bailout to improve stability, screen and monitor stimulus measures of their biodiversity effects due to plastic pollution and now due to mask pollution in seas or Covid- 19 poor disposal of protection equipment. In order to combat such drastic conditions, large investments should be made in the conservation, sustainable use and restoration of biodiversity.
There is no socio-economic development in the current global panorama. These problems and challenges directly affect human psychology, leading to the loss of psychological stability and the escalation of the financial crisis. Especially, because people are threatened by so many threats, there are more and more cases of mental crisis because people are locked at home and told to be As a result of people being told to confine themselves to their homes and maintain self-loneliness, someone is more likely to be severely affected psychologically, further affected by a lack of proper guidance or treatment.
When no resources are provided to manage the well-being of the people, the situation becomes profitable and affects mental health. Regarding the effects on sustainable psychology, the importance of better mental health should be discussed as it affects individual development and counters limit personal activities.
We have had many epidemics in the past. Middle East Respiratory Syndrome (MERS outbreak) has hit Asian countries, and West Africa has also been infected with the Ebola virus. They also affected the socio-economic balance, affected public health, and caused numerous similar deaths to what we are experiencing with COVID-19 but the new thing now is that Coronavirus affected us mentally, physically and well-being of the ecosystem with its drawbacks of limiting resources by humans while staying at homes due to partial or national lockdown where they put a burden on economy and ecosystem by overconsumption of natural resources instead at the same time human enclosure at homes give a chance to ecosystem for its resource restoration, replenishing disastrous effects caused by anthropogenic activities like decline in air pollution, soil erosion, mineral leaching, hunting, poaching and wildlife trade.
Humans are deteriorating the habitat of wild animals and the normal cycle of pathogens and their hosts. In such situations, we are becoming more and more prone to new diseases. Human pathogens such as the coronavirus are not fully understood to date and several other strains or wildlife as host of this virus (and many other viruses and bacteria) in nature that could be a matter of global health in the future. The COVID-19 pandemic is calling into question our ongoing efforts to improve the Earth’s environment. Achieving the Sustainable Development Goals (SDG) is even more important now. Emphasis should be placed on the adoption of strict wildlife trade regulations and comprehensive measures to protect the natural environment. Most importantly, consider comprehensive ways to improve our relationship with the environment that will lead us to sustainability. Agricultural stability and reduction of dependence on animal products is one such example.
There is no doubt in saying that there are some important lessons to learn from COVID-19. It is about our survival, preparedness and responsibility against nature that will lead to the control of future epidemics. Shutdowns are proving to be viable not only in breaking the chain of infection but also in the healing of the ecosystem. Air and water pollution levels have dropped in many parts of the world and nature has begun to regenerate. The important thing is that what we as human beings learn from it. Will we reduce greenhouse gas emissions evenly, will unnecessary travel be curtailed, will we allow the reduction of pollutants in the ecosystem to let nature breathe, and will we promote and adopt sustainable agricultural practices? And stop disturbing wild habitats? Most importantly, will all stakeholders, including governments, organizations and individuals, unite to fight the epidemic that has been going on for decades and resulting in loss of life and biodiversity? There will be a decrease sooner or later, the deadly coronavirus, and one of the most explosive epidemics of the century will be tackled through vaccines or other means through united efforts across borders of countries and continents. But this is not the first novel pathogen that has targeted us, nor the last. There is a need for a fresh perspective to address some of the key issues we have learned from this pandemic. Therefore, humanity must work together to stop the root causes of these pandemics. The way to deal with such pandemics in advance is to make every effort to achieve the goals of environmental sustainability.
Anagha Rajesh – Founder of Yours Mindfully
Undergrad researcher, storyteller, and community builder- that’s Anagha Rajesh, in a nutshell.
She is the Founder and CEO of Yours Mindfully, a youth-led organization on a mission to make mental health resources accessible to 1 million young people by 2030.
She has worked as an advocate for the Girls in Science 4 SDGs platform that works closely with the United Nations to make STEM accessible. In addition, Anagha has served as a facilitator for the Digital Exchange program empowering middle and high school students to collaborate beyond borders to achieve the UN SDGs.
As a researcher, she is working on a project to identify biomarkers for endometriosis, a painful uterine condition.
Tell us more about your initiative, Yours Mindfully?
Growing up, I saw my uncle suffer from schizophrenia and how the stigma around this condition prevented him from seeking medical support. When I was accepted into the 1000 Girls 1000 Futures mentorship program of the New York Academy of Science in 2019, I shared my uncle’s story with other young people in the program. We realized that mental health is a stigma in most parts of the world and decided to do something to smash that stigma.
We then went on to create e-magazines to create awareness about mental health. That’s how Yours Mindfully was born. We were called MindChamps back then. The popularity of our e-magazines encouraged me to grow our team and focus on areas beyond the e-magazine.
Yours Mindfully is now a team of 30+ young people worldwide, focusing on addressing awareness, inclusion, and accessibility in the mental health space. We create inclusive content, organize webinars, spearhead social media campaigns, and conduct contests to bring more stakeholders.
We have partnered with a range of organizations, including UNICEF, 6 Seconds (UK), Spill the Beans (Australia), Spikeview (USA), Manzil Center (UAE), and Road to Nepenthe (India). In addition, we work closely with mental health professionals to create our resources and partner with educators to get this across to young people.
Over the last three years, our initiatives have impacted 5000+ young people. We are currently piloting a program offering personalized mental health resources to youth organizations and schools.
What is the Ashoka Changemakers program all about?
Ashoka is the world’s largest network of Social Entrepreneurs and Changemakers. Error! Hyperlink reference not valid. is a carefully selected network of young people who have found their power to create change for the good of all and are ready to take on their next big role as co-leaders of the global Everyone a Changemaker movement.
13 young changemakers were selected for the Indian cohort out of 18,000+ applicants globally. Selected changemakers get access to mentorship, digital resources and a volunteer marketplace to further the impact of their initiatives. In addition, young changemakers get involved in getting more young people to become changemakers through focused initiatives.
How did you get selected for this?
The selection process was a 6-8 month long process with the following stages
1. Submission of the nomination form – This involves a detailed description of my changemaking idea – I spoke about Yours Mindfully, the impact I have created so far through the organization and how I plan to co-lead the changemaker movement.
2. National Review – 4 to 5 hours of conversations with Ashoka India Team
3. International Review – 2 to 3 hours of conversations with Senior Leaders and existing Ashoka Young Changemakers from the global network
4. Selection Panel – an in-person pitch to an esteemed jury explaining what the future potential of my changemaking idea is and how invested I am in implementing it
What are you planning to do in the next 5 years?
I plan to grow Yours Mindfully to impact more young people worldwide. I am currently exploring research in biochemistry, entrepreneurship and public policy. I hope to pursue a career at the intersection of these fields in the next 5 years. In addition, I want to explore writing and traveling in a way that helps me grow.
What other programs and fellowships are on your list that you’d like to engage in?
Dalai Lama Fellowship, Clinton Global Fellowship and Rhodes Scholarship (super ambitious!) are some programs that I am hoping to get into
Tell us more about your work at Force of Nature.
Force of Nature is a non-profit working to mobilize young people’s potential to combat the climate crisis.
I completed a three-week introductory program on becoming a force of nature, where I learned about eco-anxiety, the power of narratives in addressing the environmental crisis, and how I can utilize my unique skills to contribute to the climate movement.
Following this generic training, I joined the Canopy pathway to train as a youth consultant to help businesses create and implement solid sustainability strategies
– Under the guidance of experienced youth consultants Clover Hogan and Sacha Wright, I am working on understanding concepts like greenwashing, identifying greenwashing in the sustainability strategies of Fortune 500 companies, and figuring out ways to engage meaningfully with corporate leaders on these issues. I have been on-boarded as a consultant and am looking forward to my first project in the upcoming months.
Anything else you’d like to share about yourself?
I am the first woman from my family and community to get into a top-tier university in India and to kick-start a non-profit. I am super passionate about helping girls and women access networks and mentorship to get ahead on their journeys.
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