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How Is The World Treating People With Disabilities?

Susan Brink

A man at a hospital in Bombuaka, Togo. Celestino Arce/NurPhoto/Getty Images hide caption

In the ten years since the United Nations adopted the Convention on the Rights of Persons with Disabilities , ratified by 168 countries, there has been both progress and stubborn obstacles.

Case in point: When a new transit system in Guatemala City was built in 2010 with raised platforms accessible only by stairs, disability rights activists brought a lawsuit against the system — and won. Now, some of those stations have to provide ramps, says Silvia Yee, senior staff attorney with the Disability Rights Education and Defense Fund.

But there are still problems. People with disabilities still must get to those ramps on broken and crumbling sidewalks with no curb cuts.

A new analysis of the landmark international human rights treaty seeks to document how far countries have come in the past decade and how far they have yet to go. The World Policy Analysis Center at the UCLA Fielding School of Public Health, mapped the global response to disability .

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"Persons with disabilities are one of the last groups whose equal rights have been recognized," says Dr. Jody Heymann , dean of the school of public health and lead study scientist of the analysis. "We wanted to see how far we've come in ten years."

Goal: Countries should guarantee the right to quality education at all levels for people with disabilities.

Reality Check: That right is constitutionally guaranteed in only 28 percent of the 193 countries surveyed.

Other Protections: Children with disabilities are integrated into the same classrooms in 43 percent of countries; they are in the same schools but not the same classrooms in an additional 40 percent of countries. The analysis says that mainstreaming improves learning outcomes for children with disabilities.

"There are schools that exclude children because they see them as different," says Heymann. But other times, kids can't get to school because of gaps in transportation systems or a lack of medical supplies. "So, for example, a very bright little girl I met in Mexico lived in a one-room hut," Heymann says. "She had spina bifida and didn't have a wheelchair, so she couldn't get to school." Spina bifida is a birth defect that can cause paralysis, as it did in this child's case.

Heymann doesn't know what happened to this particular child but is encouraged by the country's overall efforts for disabled children. Mexico has been strengthening its laws to ensure education for disabled children and is among the countries that allow disabled children to attend the same schools as other children, though not necessarily the same classrooms.

Shots - Health News

Dolls with disabilities escape the toy hospital, go mainstream.

Peru is moving away from schools specifically for disabled children and toward mainstreaming disabled children in public schools. "The problem now is training teachers, and there is some backlash from parents," says Debbie Sharp, project specialist at Mobility International USA. Some parents of able-bodied children object to having their children in classrooms with students with disabilities because they believe it will harm their own child's education. To help put to rest concerns of some parents of non-disabled students, some countries, like Mexico are increasing training of teachers who will work in classrooms with both disabled and non-disabled students, says Yee.

In some areas, teachers start the ball rolling on their own. "I was in a rural area of Sri Lanka," says Wodatch. "I went to a couple of schools where they didn't have any program to educate kids with disabilities. So the teachers developed an after-school program on their own. They weren't paid for it."

Goal: Countries should guarantee the right of persons with disabilities to work in an environment that is open, inclusive and accessible.

Reality Check: Only 18 percent of 193 constitutions guarantee the right of people with disabilities to work.

Other Protections: Of the 25 most populous countries at all income levels, 14 have broad protections for people with disabilities against discrimination in the work place.

Around the world, there are nearly half a billion working age people with disabilities, according to the analysis. "The need is huge," says Heymann.

Brazil passed a law in 2015, according to the UCLA analysis, protecting workers against discrimination in hiring, promotions and training as well as guaranteeing equal pay for equal work.

Some countries, like Japan and Montenegro, have set a quota, requiring that companies employ a specified percentage of disabled workers or pay a fine, says Wodatch. But it's no guarantee. The fines are usually low enough that some companies pay the fine rather than hire disabled workers, he says.

Peru also has a quota system with employers asked to hire 5 percent of workers with disabilities in the public sector and 3 percent in the private sector, says Silvia But employers can stretch the definition of disability. "You can get deliberate resistance," says Yee. "Employers will count people [as disabled] who wear glasses, or who get headaches frequently."

Health Care

Goal: Countries should guarantee people with disabilities the right to the highest possible standard of health without discrimination.

Reality Check: Only 26 percent of 193 constitutions explicitly guarantee the right to health to people with disabilities.

Other Protections: Some countries have passed work laws to help parents and caretakers. Peru, which offers 90 days of paid leave to new mothers, extends that benefit by 30 days if the baby is born with a disability. In Armenia, working parents are guaranteed paid leave to accompany disabled children to health care and treatment appointments.

The U.N. treaty has had an impact on countries, rich and poor alike. Even in a highly developed country like Canada, ratification of the U.N. treaty led to its health care system ensuring that interpretive services are provided for deaf patients, says Heymann.

And whether inspired by the U.N. treaty, or springing up organically, less developed countries are also making changes. "We're seeing a lot of disabled women and girls working on health care," says Susan Sygall, CEO of Mobility International USA . "They're interested in making sure disabled women have access to health care, access to information on disease like HIV/AIDS and information about violence against women services."

But in some poor areas of the world, health care access and quality is poor for everyone, and the fight for improved services for people with disabilities is an uphill battle. "In some countries I've been in, Mongolia, Armenia, Georgia, health care has not been very good to begin with," says Wodatch. "The system is not there even to deliver babies. Having a doctor's office be accessible is only amusing to them."

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Act: Inspiration

Accessibility and resilience: rebuilding a society for all bodies and needs.

By Andrei Mihail , originally published by Resilience.org

April 13, 2022

Resilience is the capacity of a system to bounce back to a previous state after a disturbance. A key concept present in many works focusing on it is the role diversity plays. A diverse system has inherent fail-safes, alternatives and redundancies which allow it to better tolerate disturbances and crisis situations. And to brave the challenges of the Anthropocene, we need to foster and protect diversity – not just in natural ecosystems but in our society as well. Yet due to our mistaken perception of disability, we isolate and devalue people that diverge from what is considered a “normal” human.

What is disability? There are multiple ways to look at it. The medical model views disabilities as wrongs to be fixed, disability means impairment. The social model goes further and looks at the wider picture: disability is seen as the interaction between people’s impairments and social barriers.

Let’s picture a person unable to use stairs. If we view disability through a strictly medical lens, we will focus on giving the person the ability to climb them through various medical and technological procedures. In contrast, the social model looks at the lack of alternatives to stairs, which is the real barrier. Advocates would focus their resources on building ramps, elevators and so on. The impairment is still there but is no longer disabling – the individual can function with autonomy and dignity.

There are many creative approaches to making society more accessible. And when we strive for an accessible society, we uncover many possibilities for climate change mitigation and adaptation. I will return to this point in a second, but I want to make clear why disability and climate change are related.

First, we live in a deeply inaccessible society, and despite some considerable progress in disability rights and challenging existing biases, there are still deep-rooted issues. Disabled and differently abled people are still frequently physically barred from places needed for personal development, political participation, and entertainment. From cinemas and townhalls to schools and workplaces, too many spaces are not designed for anything but a “normal” person. The inaccessibility of society in the context of a changing climate creates an existential risk for us.

Given the structural devaluation of disabled lives, the different material needs, the links to poverty and isolation and the frequent lack of government foresight, it’s easy to see why we are significantly more vulnerable to natural disasters and supply chain disruptions. Whenever a catastrophe happens, the victims will be disproportionately disabled people. They are ignored during warnings, left behind during evacuation attempts, and neglected during relief efforts.

There are countless examples of governments and humanitarian NGOs failing to accommodate the unique needs of blind, deaf, immobile, neurodivergent and otherwise disabled people. Whether we look at the lack of interpreters during Hurricane Katrina evacuation efforts or the treatment of disabled climate refugees, governments happily ignore the needs of disabled people – be they citizens or not.

The COVID pandemic gave many politicians and celebrities the chance to make official what disability activists have been saying for ages. They touted, loud and clear, that only the vulnerable are at risk of losing their lives. This narrative shows the complete disregard, or even contempt, for the safety of the vulnerable population, which includes the immunocompromised, the elderly and those with pre-existing conditions. While people with learning disabilities were being given blanket Do Not Resuscitate orders in the UK during the first wave of the pandemic, others were protesting to end the lockdown early to get haircuts or massages. Medically vulnerable and socially considered disposable, disabled people and their allies have no choice but to organize, self-advocate and fight back.

We must recognize the many forms of oppression which, through their origins, history, and interactions gave rise to (and maintain) the existing ecocidal, ableist, white supremacist, patriarchal, colonial system. If our climate activism is genuinely radical, if it wishes to transform society on the fundamental level and ensure a better future for all, then it must recognize the ways in which climate change, disability and other forms of opression interact. It must fight ecoableism and lift the voices of disabled leaders.

Ecoableism is when our approaches to environmental activism end up hurting disabled people. It is ‘a failure by non-disabled environmentalists to recognize that many of the climate actions they’re promoting make life difficult for disabled people’. There is a need for constructive dialogue rather than punishing those engaging in it.

A good example of ecoableism: bike lanes. Many car-free routes have barriers designed to stop motorbikes. The “ableist” part becomes clear when you consider that many disabled people would still want to use them, but must use nonconventional bikes, frequently harder to maneuver, such as recliners or wheelchair hand bikes. Moreover, city planners admit that a determined person can still maneuver through the barriers with a motorcycle, while for some modified bicycles, this is simply impossible.

Up and over – cycle barrier in Greenwich Park This file is licensed under the Creative Commons Attribution-Share Alike 2.0 Generic license. Attribution: Stephen Craven https://commons.wikimedia.org/wiki/File:Up_and_over_-_cycle_barrier_in_Greenwich_Park_-_geograph.org.uk_-_951419.jpg

Glucose monitor applicator wrapping, author supplied.

I hope I made it clear that the needs of disabled people vary. Like all people, individual access needs to change from individual to individual. By restructuring both our societal values, our mindsets, and our economies to fight climate change, we have the unique chance to design novel support systems and supply chain structures able to cater to varied individual needs, including those of disabled people. This unique chance will build resilience within our communities by ensuring everyone’s needs are met, fostering social cohesiveness and increasing participation.

An inaccessible society strangles itself. It stops people with unique talents and skills from participating in the problem-solving and decision-making processes. An accessible one will have more diversity in its approaches, more perspectives to see the world from. Our means to achieve this must be different from forcing disabled people into poverty by cutting benefits when there is a worker shortage, as done with the American “incentive model.” We need to provide an environment where everyone can participate in activities which are both fulfilling and necessary for society, not force people into dead end jobs where their needs are not accounted for using poverty as a threat.

Moreover, accessibility is good for everyone. We will all benefit from a less judgmental, more empathetic society. While wheelchair users need ramps, they also benefit the elderly, injured people and people with strollers. Remote working benefits the disabled primarily, but by reducing commute requirements, it improves overall work-life balance and helps fight climate change by reducing the need for individual cars and putting less pressure on public transport systems.

Importantly, anyone can become disabled. The already ongoing climate emergency is increasing the frequency and intensity of natural disasters and increasing the risk of diseases. This means that building strong, flexible and resilient healthcare and support systems is a vital climate adaptation goal.

Life as a disabled person is not easy. But beyond the “inspiration porn” designed to make abled people feel better about their own suffering, there are important lessons to learn regarding both personal perseverance and community building. The green transition offers an unprecedented chance to both rebuild physical infrastructure and change social norms.

By joining the forces of the disability rights movement and environmental activism and using the hard learned lessons of both we can strive to dismantle existing systems of oppression and build a new society where accessibility, resilience, and sustainability are fundamental values, rather than afterthoughts.

https://ncd.gov/publications/2005/09022005 National Council on Disability on Hurricane Katrina Affected Areas II

https://www.tandfonline.com/doi/full/10.1080/09687599.2019.1655856 Seeking a disability lens within climate change migration discourses, policies and practices

https://link.springer.com/article/10.1007/s10584-013-1011-1 Simulations of Hurricane Katrina (2005) under sea level and climate conditions for 1900

https://www.greenpeace.org.uk/news/disability-environmental-movement-exclusion/?%24Version=0 For disabled environmentalists, discrimination and exclusion are a daily reality

https://www.theguardian.com/world/2021/feb/13/new-do-not-resuscitate-orders-imposed-on-covid-19-patients-with-learning-difficulties Guardian: Fury at ‘do not resuscitate’ notices given to Covid patients with learning disabilities

https://www.ncd.gov/publications/2006/Aug072006 The Impact of Hurricanes Katrina and Rita on People with Disabilities: A Look Back and Remaining Challenges

https://www.washingtontimes.com/news/2005/oct/5/20051005-095340-4787r/ katrina on deaf people

https://www.webofscience.com/wos/woscc/full-record/WOS:000413842300001?SID=D3PWMUgbz6A5Rf9LjdQ Factors Associated with the Climate Change Vulnerability and the Adaptive Capacity of People with Disability: A Systematic Review

Teaser photo credit: New Orleans : Wheelchair with flood damaged possessions on curb as trash. Own work Infrogmation . Permission is granted to copy, distribute and/or modify this document under the terms of the  GNU Free Documentation License , Version 1.2 or any later version https://commons.m.wikimedia.org/wiki/File:HollygroveJan1106Wheelchaircurb.jpg

Andrei Mihail

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Differently Abled People and Their Life

Background: Being differently abled is a complex phenomenon and also concept of disability has shifted from individual impairment to social phenomenon.

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Down the ages, we see disability is as curse or punishment. With the development of science and social change, disability is seen as a societal problem rather than individual problem and solution became focused on removing the barriers to social change, not just medical care. The persons with a disability encounter discrimination; they tend to alienate themselves from society as they feel unwanted and rejected. It affects the psycho social condition of persons with disabilities. The human person is a complex entity composed of two distinct phenomena, the physique, and the psyche, commonly called body and mind [1]. It is both common knowledge and scientific theory that a person's mental life and emotional reactions are influenced by his physical condition as well as his social and physical environment [2]. This research paper aims to present Psycho-Social problems faced by a person with a disability. And the objectives are to study the profile of the physically disabled and psycho social problems of the disabled. This study is descriptive in nature where data is collected from both primary and secondary source. 25 respondents were selected for the study and interview schedule is used to collect information.

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• Inclusive Skill Development: India and Differently-abled Livelihood
• On: January 17, 2023
• By: Smile Foundation

“Development can only be sustainable when it is equitable, inclusive and accessible for all. Persons with disabilities need therefore to be included at all stages of development processes, from inception to monitoring and evaluation.” Ban Ki Moon

The Context

People who are differently abled perceive the world quite differently from those without them. Their experiences, joys, difficulties, and more might find similar patterns with others but it would be true to say here that their journey toward independent living is filled with difficulties unimaginable for most of us. What can we do in such a case? Enrollments in online skill development courses are one way to go about it.

We can support them while they build their own bridges to get where they want to be. Sometimes, being a fully supporting character in someone’s life is more than enough.

What does Disability mean in India?

The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act was approved by the Indian government in 1995. According to the Act, a person who qualifies as “disabled” has at least a 40% handicap, as determined by a medical authority. Such a person is also called PwD, a Person with Disability.

Additionally, there are various frameworks that are now utilised in India to describe and define disability. The United Nations Convention on the Rights of Persons with Disabilities was ratified by the Indian government.

In October 2007, (UNCRPD), according to Article 1 of the Convention, “Persons with disabilities include individuals who have long-term physical, mental, intellectual, or sensory impairments that, when combined with other factors, may prevent them from fully and effectively participating in society on an equal basis with others.”

As a result, disability is not viewed as a distinct medical illness but rather as the result of interactions between a person’s health and their environment in general.

In India, there were over 22 million people with disabilities, which is about 2.13 percent of the population, according to the Census of 2012. This encompasses those who have physical, mental, or communicative difficulties. Nevertheless, the 2009 World Bank Report estimates that there are about 6% of disabled people in India. To top it off, the World Health Organization estimates that 10% of the population is affected. 

Disability is a complicated phenomenon, making it difficult to precisely estimate its prevalence through a national survey. Given these difficulties, it is not unexpected that there is disagreement over the best ways to quantify handicaps, leading to a range of numbers.

Value Proposition of Including People with Disabilities in the Workforce

Despite having a sizable population, PwDs are rarely regarded as the nation-state’s productive human resource. National states sometimes disregard the relationship between disability and poverty, which creates a vicious cycle in which people with disabilities and their families are more likely to be poor than the general population because they have fewer opportunities to earn money and higher expenditures.

The talent, hard work, and potential of PwDs in India are mostly unrealized, underutilized, or underdeveloped. Additionally, the employment and education rates for people with disabilities are significantly lower than those of other people.

PwDs are one of the poorest populations in India since there are fewer options for them to make money and more expenditures to cover. Even though work prospects have risen over the past 20 years and India’s GDP grows by an average of 6.3% percent , the employment rate for people with disabilities actually decreased.

Many not-for-profit organisations working in tandem with the rising needs of the Government of India and the nation, have been trying to skill the Indian youth from underprivileged sections to prepare them better for employment opportunities, and online skill development courses are high on their agenda.

Suggestions for the Private Sector

So how can the private sector rise up and make their workplace more diverse and representative of different communities?

According to the PwD Act 1995, the Government of India will provide incentives to the public and commercial sectors to encourage the hiring of people with disabilities. However despite the incentive program’s passage, 13 the outcomes need major improvements.

To evaluate current incentive programmes and develop new ones that will encourage the hiring of handicapped people in the commercial sector, the private sector’s engagement, in especially the business world, requires considerably more creativity and should ideally go beyond simple incentives like tax breaks and Provident Fund payments, etc. 

Creating accessibility in the workplace, and providing assistive technology, gadgets, personal attendants, etc. are just a few examples of improvements and concessions that might be made to the workplace to support and promote employment for PwDs.

It’s a great idea to hold private meetings with corporations and business groups, together with an executive decision-maker, to discuss how they might help PwDs have a better quality of life. Create a composite livelihood plan as a pilot project, and appoint an impartial committee to oversee it. The committee should have suitable representation from PwDs, business entities, the government, and civil society.

Some Points for Urban Livelihoods, Self Employment and Entrepreneurship

A good starting point would be to Include the interests and needs of the differently-abled as a vulnerable group in new or current poverty reduction programmes to provide chances for livelihood (wage and self-employment) for those living in urban areas, particularly slums and from lower socioeconomic backgrounds.

Also, create incentive programmes (such as exemptions from sales tax, VAT, excise tax, and service tax) for disabled business owners, companies that employ more than 50% of disabled people, and companies that produce assistive technology or gadgets for people with disabilities.

Points for Rural Livelihoods

Under major government initiatives, like the Mahatma Gandhi National Rural Employment Guarantee Act (MGNREGA) which already includes provisions for PwDs, disability-specific sub-programmes might be launched. Disability audits should be conducted on a regular basis to make sure the programme is effective for the handicapped community. These will highlight the creases and assist in determining the best tactics for ironing them out.

Additionally, campaigns may be launched to raise awareness of the rights granted to the disabled under the programme.

In order to guarantee that the National Rural Livelihood Mission (NRLM) is inclusive with a provision for reasonable accommodations/adjustments, there should also be an extra focus on vulnerable groups like women with disabilities, etc., ensuring that 3% of the target population benefits from the scheme, and have regular reviews undertaken to determine the impact of the programme on the livelihood patterns of PwDs.

There are many young girls and boys who are differently-abled and can do a lot better in their professional careers and lives overall if provided the much-needed support like giving them an environment to learn new and old things 360 degrees. Online skill development courses with their advancements, especially after the pandemic, can work wonders for them too.

India indeed has a lot of work to do for the upliftment of the differently-abled.

The differently-abled must educate themselves on the newest technology of the day if they want to live a full life– a life filled with love, care, respect, dignity, and contentment. The job market’s increasing need for these abilities can keep them in demand and help them integrate into society.

Smile Foundation and Inclusive Livelihood

Smile Foundation through its livelihood programme, STeP (Smile Twin e-Learning Programme) is employing all its human and technical resources towards skilling the Indian youth from lower-income families for better employment opportunities.

Inclusive skill development is the programme’s next logical step towards broadening the scope of our livelihood-related work. Become an active agent for the nation’s economic progress aligning your CSR activities with our livelihood programme. Learn more here !

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‘Empowering the Differently Abled’

India has roughly five crore incapacitated people. Persons with Disabilities (PwD) could in fact be as high as 5 – 6% of the total population. Almost half of them are uneducated and a significant number of that populace lives in rural areas. Differently-abled people deserve to progress in all facets of life- whether it is physical, economic, or social. They need a committed environment to get a rightful place in society.

Society’s degree of participation is by and large measured by the attitude and process through which it cares for those on the fringes. A truthfully empathetic society makes allowances for such frailties in a non-intrusive, participative, and sensitive manner while ensuring equal opportunities.

Differently-abled individuals, specifically in rural areas in the country, face plenty of problems as compared to urban areas. Lack of understanding and sympathy for PwDs, the dearth of awareness, and education are the three biggest challenges.

The Government of India has been proactive in terms of empowering the differently-abled. Beginning with the Disabilities Act of 1995, several schemes and hosts of acts have been framed to ensure that these marginalized have plenty of opportunities to become self-reliant.

‘Empowering the Differently Abled’ is the latest book that dissects the problem of PwDs in all its hues and colors. Edited by Dr. Satya Narayan Mishra, Sanjaya Kumar Ghadai, and Barsha Mohanty, this volume is a pioneering effort because of its sweeping understanding and originality.

As the blurb says, ‘there is a wide perception that the robust legal structure is not matched by practical implementation to mainstream and empower them. These essays capture the insight of different stakeholders, with an eye to eschew ostracization, encourage inclusivity and promote barrier-free movement, provide assistive technology.’

A former civil servant, presently Dean of School of Management, KIIT deemed university and   columnist Dr. Mishra lays down the purport of the book in the preface: ‘it encapsulates the experience, angst and expectation of major stakeholders who have been closely associated with the disabled like the NGOs, who have been afflicted by such impairment, researchers who are assiduously working on the innards of the problem and policy makers and implementing agencies.’

The Rights of Persons with Disabilities Act of 2016 – the latest one in the series of acts – considers 21 disabilities, which confirm to international standards. These include intellectual and physical disabilities such as Autism, Cerebral Palsy, Parkinson’s disease, and Muscular Dystrophy among others. Under the Act, discrimination against persons with disabilities, inequality, and refusal to their rights can result in legal action. Evidently, this and other interconnected issues have been discussed vividly in this book  – all of 300 plus pages.

From legislative shortcomings to educational laxities, from attitudinal changes to skills and assistive technology, women living with disabilities, from the elderly with infirmities to the role of PRIs with Odisha -specific situations, the reach of the book is extensive.

Even as the volume is the product of a national seminar sponsored by ICSSR, the themes are across-the-board and they are well-researched. Consisting of two dozen essays and contributed by academicians, legal practitioners, government officials, and experts in medicine, this compendium is a sensible attempt to look at one of the most neglected sections of the population. The overwhelming refrain of these essays is this: the need to inculcate an attitude of empathy and the need for greater involvement of corporates.

In hindsight, although the government has established a conducive eco-system for the PwDs, India’s corporate are loath to provide opportunities to them, making it tough to break out of the clutches of poverty. To add to this, organizations are devoid of an inclusive workplace, initiatives, and sensitization programs.

If the need of the hour is to make the public and the systems inclusive for this substantial portion of our population by enabling them to lead a dignified, independent life, this anthology is an expedient one with each paper highlighting the problem and offer solutions.

Despite the fact that laws are existent, the lack of implementation of these laws creates hurdles in creating the enabling environments. Obviously, there is a need for a change of approach towards the PwDs – from charity-based thinking to a Rights-based approach. The book discusses the ways and means of creating such a milieu.

Issues faced by the ‘Divyangs’ are numerous – barriers in accessibility, economic empowerment, and political inclusion. All this is possible through an integrated approach:  create further legislation, policies, and concessions, coupled with active participation by organizations, employers, and, in fact, every citizen. Citizens need to be sensitive towards the requirements of the differently-abled persons, provide them the opportunity to live with dignity by removing all barriers – physical and perceptual – that inhibit them. The volume deliberates on all those aspects.

As Dr. Mishra says in the concluding lines: ‘equal opportunity, inclusive education and empathy are the tripods of a true welfare state. In order not to abdicate that role, there is a need to create space for researchers, practitioners and parents to discuss, compare and challenge the stereotyping and how disability is culturally defined.’

With a foreword by Dr. Achyuta Samanta, Founder KIIT & KISS, this is a wonderful corpus of literature on the ‘Divyangs’ – useful   for policymakers as well as bibliophiles.

 ‘Empowering the Differently Abled’

Dr Satya Narayan Mishra et al

Authors Press

New Delhi, 2020

Bhaskar Parichha is a journalist

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New study uses ideas from string theory and quantum field theory to simplify calculations of transcendental numbers, like pi and Euler’s Zeta function.

Science and Technology: A Specially Abled Person’s perspective

Photo: Siddharth Kankaria/ Research Matters

For most people, technology makes things easier. For people with disabilities, technology makes things possible. —Mary Pat Radabaugh

This year’s National Science Day, celebrated to commemorate the discovery of Dr. C V Raman’s ‘Raman Effect’, is themed around ‘Science and Technology for Specially Abled Persons’. One billion people, or 15% of the world’s population, experience some form of disability today, and the prevalence of disability is highest in developing countries like India. A report by World Bank estimates that about 110-190 million of them experience significant disabilities.  ‘Persons with disabilities’ or PwDs include those who have long-term physical, mental, intellectual or sensory impairments which may hinder their full and effective participation in the society.

For an individual with a disability to experience life to the fullest, it’s not sympathy that is needed, but the ability to live independently with dignity. Children with disabilities are among the most stigmatized and excluded group around the world. These children are likely to have poorer health, lesser education at school and lesser economic opportunities when they grow up. They are more likely to live in poverty and deal with greater inequalities than their well-abled peers. What can technology, the revolution that we are so proud of, do to empower these children and provide a level playing field? How can we, as a society, help in the inclusion of PwDs in the mainstream?

Technology for the Specially Abled

Assistive technology (AT) is any item, piece of equipment, software program, or product system that is used to increase, maintain, or improve the functional capabilities of persons with disabilities. A person who has difficulty in moving could use a walking stick, crutch, walking frame, wheelchair or tricycle; a person with visual impairments could take advantage of eyeglasses, magnifier, magnifying software or a screen reader on a computer, a white cane, GPS-based navigation device, read and write with Braille script, etc. all in an attempt to make life better. While there is no dearth of assistive technologies available in India, they tend to be expensive and unaffordable to most.

With the government’s ‘Accessible India Campaign (Sugamya Bharat Abhiyan)’, a nation-wide campaign for achieving universal accessibility, there is a push to integrate PwDs in the society. Easing commute between work and home, providing convenience in day-to-day activities and ensuring safety for people with disabilities can go a long way in making them independent and more productive. Kannur, a small district in Kerala, became the first disabled-friendly district in the country setting an example to others. Under the 'Barrier-Free Kannur' project, former District Collector Bala Kiran ensured ramps, lifts and signage in all the 1839 public buildings to help people with disability. This is an example of how small steps can go a long way.

Specially Abled in Science and Technology

It is often perceived that children with disabilities settle down with a career outside of STEM (Science, Technology, Engineering and Mathematics). “The percentage of visually impaired taking up careers in commerce or arts is more when compared to science”, says Mr. Muthu Raj, Assistive Technology Expert at Cheshire Homes India. Can mainstream careers in STEM be a really viable option for these children?

“A student with disability who is interested in pursuing a career in STEM should be able to use his/her hands, to think abstract and have verbal and non-verbal communication skills”, says Mrs. Rukmini Krishnaswamy, Director, Spastics Society of Karnataka. Trained in India and the US, she is a pioneer in the field of special education for over five decades. “Individuals with disabilities are underrepresented in STEM today because they lack sufficient preparation, have minimal access to facilities, programs, and equipment and are often unaccepted by educators, employers and co-workers”, she says.

Mrs. Krishnaswamy created the first facility for children with cerebral palsy. She has organized, trained and mentored innumerable teachers and therapists in all fields of special education. “In order to create a positive environment for learning and working, efforts should be taken to increase awareness of college educators regarding the potential contributions and accessibility need of the specially abled”, she points out.

What does a specially abled student need to pursue a career of her choice in STEM? “They must begin to use computing and networking tools at a young age which can help them to communicate with others”, says Mrs. Krishnaswamy. “If such students are aided with assistive technology to overcome their impediment, they can work in areas of their interest. For example, a good number of visually impaired students have been trained as network engineers after completing their course in the Cisco Academy For the Vision Impaired (CAVI), a leading technology school for the blind around the world”, echoes Mr. Muthu Raj.

There are numerous examples of scientists who have had a successful and fulfilling career despite coping with a disability. Today, some of them are working on exciting projects in a wide range of fields, including those that create assistive technology. Dr Satendra Singh, an acclaimed doctor and founder of Infinite Ability, a medical humanities group on disability, contracted polio when he was just nine months old. Today, he is also a prominent disability activist and works extensively to make public places more accessible to persons with disabilities.

With full access to learning opportunities and solid academic preparation, students with disabilities are poised to succeed. But one final piece of the puzzle is acceptance. Negative attitudes have been identified as the single greatest barrier faced by individuals with disabilities who are pursuing a career in STEM fields. Educators, fellow students, employers, and co-workers, who embrace diversity, often find themselves working with gifted people whose abilities far outweigh their disabilities. It is important to maintain commitments to inclusiveness, training, and mentoring that can help ensure that differently abled researchers participate fully and enhance professional capability at all levels of the workforce.

What would make one successful in this race for being the best? As Mrs.Krishnaswamy puts it – “Should we debate on academic achievement being the ultimate achievement in the urban society?” Lets pledge to embrace diversity and learn from others their slice of life.

• National Science Day
• Specially abled

10 Ways To Help The Differently Abled

If you know anyone who is differently abled, it may have taken you some time to fully understand how to treat them or even act around them. You, hopefully, know by now to treat them like you would anyone else and offer assistance in only a few cases. 

However, if you aren’t sure how to act around, or treat, a differently abled person, that needs to be something at the top of your to-do list. Most of the time, you can treat them just like anyone else, and it is that simple. However, sometimes it gets a bit more complicated, and it is essential to know how to help in those situations.

Ask First and Help Later 

Assuming someone needs help without asking is very presumptuous. While it may seem caring or the right thing to do, in some cases, it may cause more harm than good.

More Harm Than Good

When people see someone who has any kind of disability, they assume that person needs help. The reality is those with a disability often don’t need help in their day-to-day lives. They get by perfectly fine without others. 

Helping someone without asking can sometimes disrupt their thought process or cause them to become disoriented. For example, someone who has autism can become easily overwhelmed by being touched or spoken to by a stranger. Helping them without asking can do more harm than good. 

If someone has a guide dog or another support animal, placing yourself in their routine can disrupt the animal and cause it to miss something their handler needs to know. While they are trained to ignore interruptions and other people, they aren’t perfect and have a tremendous job to do. 

We Are Equals

We all have pride that doesn’t allow us to receive help or hand-outs from people. Differently abled people are the same as us, so when you assume that someone needs help simply because they are different than you, that person often feels pity. 

While most people don’t offer help out of a selfish desire, it can come across as if they are lesser than you, or you are better than them. The reality is, we all have weaknesses or things we are worse at than others. We are equals and should be treated as such. 

(Source: The Mobility Resource , Disability awareness , DHS )

Speak Directly to The Person

If you meet someone who is differently abled, they might have a handler or someone who is taking care of them. Their caretaker is not a replacement for them. You should not speak to their caretaker about them as if they are not even there. 

Make eye contact, speak directly to them, and treat them as you would anyone else you were interacting with. They don’t deserve to be talked about instead of talked to, no matter what they are dealing with. 

Get on the person’s level. If they are in a wheelchair, don’t look down while talking to them; bend down and get on their level. They want to be treated the same as other people in society, so sometimes it is necessary to make accommodations to make them feel equal. 

(Source: Vancity , One Young World , CDC )

Employ Differently Abled People

Suppose you are in a position to hire or fill positions at any kind of place of employment, look for ways to employ those who are differently abled. They have bills and groceries to buy just like you do!

While it may require some change on your end and how you run things at your work, employing someone who is differently abled can change their life. Giving them responsibility and a way to make a living for themselves only fuels their desire to become self-sufficient.

Getting a job is a crucial step in their being able to manage their life without someone needing to look over them. The way they look at the world and what they are capable of doing in it could be drastically altered by you giving them a job to do. 

It is common for those who are differently abled to be looked over for a job because they may require a bit more training or some more supervision than others, but the life you are giving them is far greater than the minor work you would have to put in. 

Influence Your Workplace to Be More Inclusive

If you are not in a place to hire someone, or if your workplace is not very inclusive, start changing that. A few things you can do to make your workplace more inclusive are:

• Have a conversation with HR about what a more inclusive space would look like
• Include other employees in your desire to change and offer them the chance to help
• Contact organizations that can help your workplace become more inclusive of setting training.
• Invite others to join you at conferences, classes, or training to learn more about differently abled people
• Try to get your workplace physically set-up to accommodate wheelchairs, braille signs, and service animals.

After a few weeks or months, you should start seeing a change in conversations and interest when going to hire new people in the workplace. Changing things like that can create a job opening for someone who may feel like they would’ve never had a chance. 

(Source: Your Story , Net Meds , Public Service Degrees )

Educate Yourself

One of the most significant issues with minorities, or differently abled people, is the treatment they receive. Often, the reason they are discriminated against is due to a lack of education about their abilities, or lack thereof. 

Learn The Proper Terminology

Knowing how to respectfully speak about, and to, someone who is differently abled is a crucial part of respecting them and their life. You can be as lovely as you want, but if you speak about them using derogatory or outdated terms, you are only hurting them and everything they have worked towards with gaining respect in the community. If you are unsure of which terms are inclusive, you can read this “ Guide For Inclusive Language For People With Disabilities “.

There are classes you can take that can help you understand and learn more about how to talk to or about someone who is differently abled appropriately. While these are mostly geared to help family members learn how to cope with an injury, they can help others too. 

You can also ask someone who has a disability. It is better to have a relationship with this person, so they understand your intention. There are no hurt feelings; however, having a real conversation about respect and appropriate terms can go a long way. 

By teaching yourself the proper etiquette, you will only inspire others to do the same. You can also use your knowledge to help educate and encourage others to get educated on the proper way to speak about them and to them. 

Educate Yourself On The History

Knowing the history of any subject can increase your ability to empathize with groups of people that do things differently than you. Specifically, learning about the ADA, you will discover that differently abled people had limited rights until a few decades ago. 

Being knowledgeable about the lack of respect and views of differently abled people allows you to see the issues that are still prevalent today. Unfortunately, prejudice does not disappear just because the government passes an act that gives groups of people rights. 

Be a Promoter

The best weapon against intolerance or ignorance is crucial conversations and awareness. Promoting the correct knowledge and the idea of losing prejudice in exchange or slang is the best way to stand up for those who are differently abled, even if you don’t know anyone. 

Using things like social media, social circles, and casual conversations, you can change the thought process of thousands of people and their ideas of disabled people. 

If you see something happening to a differently abled person, don’t ignore it. Unfortunately, not everyone sees them as equals, and it can be easy for them to be walked over. In some circumstances, standing up for them when they can’t be the right way to help them. Don’t default to it but evaluate every occasion with the knowledge that you may need to be their voice. 

Learn How to Ask The Right Questions

Suppose you can sit down with someone who is differently abled and ask them how to properly ask questions. Knowing the right way to ask if someone needs help or even knowing how to communicate with them can help navigate the stressful situation you may find yourself in. Many

For example: Learning how to say a few phrases in sign language can help the language barrier be broken quickly and allow for a less stressful or alienating time for both parties. Some simple phrases you can learn are:

• Do you need assistance?
• Are you okay?
• Is there anything I can do for you?
• What is your name?
• Where do you need to go?

After learning how to ask these questions, you can learn a few critical responses so you can understand the answers. One of the best places to start is by learning the alphabet because then they can spell things out to you if it was needed. 

(Source: One Young World , Family Education )

Volunteer in Your Area

There are many programs that allow volunteers to come into facilities or be involved with programs that help out those who need help. Offering to volunteer your time and skills can not only help a person with a task, but it can also alleviate some financial burdens they may have from having to hire help. 

Some things you can often volunteer for are:

• Helping to train a support animal
• Grocery Shopping for those with vision, social or cognitive disabilities
• Teach classes on how to interact with those who have disabilities
• Help redo a house to be more accessible.
• Be a sign-language interpreter.

Even if you only have a few hours a month to offer, so much can be accomplished by helping someone with daily chores or conversations. Usually, you can get in contact with local churches, health departments, or nonprofit organizations for a list of ways to volunteer. 

Even though you are helping them out, they are still equal to you as people. Everyone needs help sometimes, so simply thinking about it like that can help you realize that their disability is no different than a hard moment in someone else’s life. 

Encourage Them

If you have someone in your life who is differently abled, they may need some encouragement every now and then. While most people are comfortable with who they are, it can get difficult sometimes to work harder when doing things. 

Don’t use phrases like:

• “Wow, you did that so well!”
• “You were so close!”
• “I know it’s hard.”
• “I’m sorry this happened to you.”
• “You’re so inspirational!”

Instead, treating them like everyone else will do plenty of raising their confidence. If you start pointing out all of the great things someone is doing, it can start to feel patronizing. Differently abled people simply want to be treated like everyone else. Their daily chores and accomplishments are no different than anyone else. 

Pay Attention To Accessibility

When inviting someone to something, or scheduling something, pay attention to the accessibility that it may provide for a differently abled person. If a location does not provide adequate accessibilities, then move the location of your event. 

If you want to see real change, you have to settle for nothing. Using services or vendors that don’t provide anything for the differently abled is only encouraging that thought process. If you give your money and time to someone else, things will begin to change. 

For those in a wheelchair, they need open spaces to move and ramps to get to higher areas. Those with vision impairments may need braille menus or the ability to bring a guide dog with them.

 Mistakes happen, and if you forget something, apologize and move on from the situation. Offer assistance in place of whatever was forgotten, but don’t spend all day apologizing. They know things happen and don’t want to feel as if you are only sorry because they are differently abled. 

Give Them Grace

Now, everyone needs grace sometimes. However, when someone has a cognitive or mental disability, they may need more grace and understanding than others. Often, they don’t know what they are doing, or even that it isn’t socially acceptable. 

Don’t let yourself be affected by their behavior or the behaviors of those around you. The best thing you can do is acknowledge that something about their environment needs to change and try to help them. 

Make it a normal conversation that people with cognitive disabilities may act differently in social settings than others. Don’t alienate them; include them with the understanding that things can go wrong. Not just with them, but with anyone, at any time.

(Source: Vancity , One Young World , The Mobility Resource , Disability awareness , Your Story , Net Meds )

Speak Clearly, Pay Attention

If you are going to offer your assistance, or just have a conversation, speak clearly and properly. Get on their level, look them in the eyes and annunciate. You should continuously evaluate the conversation to make sure that their level of understanding matches what you are saying. 

Unless you have been told otherwise, differently abled people can make their own decisions, so let them. Allow them to speak their opinions and be heard as a person by showing interest in the conversation instead of blowing them off. 

If someone has a speech impairment, don’t finish words or sentences for them; allow them time to finish what they are saying. Pay attention to their words and tones, and do not discount something they say simply because they are differently abled. 

In reality, have a conversation with them like you would with anyone else. Pay attention, be interested, and see them as providing equal context and value in the interaction. 

Respect Confidentiality

Thanks to HIPPA and the ADA, people are not required to disclose the nature or extent of their disability to someone if they do not want to. Some people are very open and like talking about their issues, while others would prefer to keep it quiet and to themselves. 

No matter the desire of the differently abled person you are talking to, it isn’t your place to ask or pry for more information than they are wanting to give. There are a few circumstances that would justify asking someone how they became differently abled or what their disability is. 

If they were to start the conversation, it is your job to be interested and listen. Asking questions is really only appropriate if it is relevant or if you don’t understand something. Be someone they can confide in without them feeling alienated or pity. 

Final Thoughts

Respect is a simple thought process and even a simpler way of life. Respecting and treating those who are differently abled the same as others in society is the best way to help them. Don’t talk down to them or treat them better simply because they have a different ability. They are people. 

Proactively, the best way you can help differently abled people is to challenge the negative narrative that believes they are hazards or needy. Encourage others to get educated and see them as assets and equals instead. 

Contributor

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The Differently Abled: Exploring the Rights and Legislation in India

• First Online: 03 March 2019

Cite this chapter

• Shruti Bedi 3  

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There are certain institutional and societal practices that give rise to inequality amongst people. The discrimination could be based on grounds of caste, gender, color, religion, status, and power in society and the physical ability or rather disability stemming from personal prejudices or perceptions. Laws ordinarily assist in molding the relationships existing in society in a progressive manner. They help redefine the social perceptions and are used to establish reformatory practices. With respect to persons with disability or rather the differently abled, the law has been and is being used to change the orthodox view of disability. This chapter will provide an overview of the rights available to the differently abled under the Indian Constitution. The Constitution bestows the fundamental rights of equality and personal liberty to each and every person and recognizes the ideals of dignity and privacy of human beings. It will examine how the law is trying to bring about a change in the social notions, prejudiced perceptions and the practices of social exclusion faced by the persons with disability. It explores the development of the legislation and the fundamental rights available to the differently abled in India today.

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Institutional subscriptions

The Preamble to the Constitution of India expressly lays down the objectives which reflect the philosophy of the Constitution.

The Preamble to the Constitution of India as interpreted in the famous case of Kesavananda Bharati v.  State of Kerala ( 1973 ) 4 SCC 225.

A constitution bench of 9 judges gave a historical judgment in the K.S. Puttaswamy v. Union of India ( 2017 ) 10 SCC 1. They interpreted the hitherto unrecognized right to privacy as a fundamental right of the people of India under Article 21 of the Constitution. Article 21 which guarantees the most fundamental of all rights is the right to life and personal liberty. Right to privacy is now recognized as a fundamental right under Article 21.

Article 19(1)(a), Indian Constitution guarantees the fundamental right to freedom of speech and expression to all the citizens. This freedom is available to all persons regardless of their abilities, status, and other disabling factors.

See the recent judgment of the Supreme Court upholding the rights of the LGBT community and striking down Section 377, IPC in Navtej Singh Johar v. Union of India Writ Petition (criminal) No. 76 of 2016 , delivered on September 6, 2018. The transgenders among such others with different sexual orientation have been held to be a part of the society, and their rights and feelings cannot be ignored as it would result in the denial of their right to dignity and personal liberty under the Indian Constitution.

Ashok Kumar Thakur v. Union of India ( 2008 ) 6 SCC 1., para 49. As stated in the case in para 6.5, the objective of Article 15(5) is positive discrimination which is based on the valid classification to meet the objective of social justice, i.e., to provide opportunities to the weaker sections of the society.

The Constitution of India under the concept of equality provides for equal status, social and economic justice, and the dignity of the person. These objectives are mentioned in the Preamble to the Constitution.

Article 51-A(e), Constitution of India is one of the eleven fundamental duties of the Indian citizens. Although these duties have not been made mandatory by the Constitution, it is imperative to observe these in letter and spirit as these duties reflect the culture and identity of the nation. Non-observance of some of the duties has been made punishable under laws enacted by the Parliament for the purpose. Also see State of U.P. v. Dina Nath Shukla (Dr) ( 1997 ) 9 SCC 662 at page 666.

Bagenstos, S. R. (2004). The Future of Disability Law. The Yale Law Journal, 114 (1), 1–83. Similar arguments have been advanced in this article regarding the Americans with Disability Act (ADA), 1990.

As per Article 246 and the Seventh Schedule of the Indian Constitution, the Parliament has the power to make laws on matter mentioned in the Union List and the Concurrent List. The State Legislatures make laws on matters in the State List and Concurrent List. Since rehabilitation of the disabled is a matter in the State List, The Parliament cannot make a law on the same.

As per Article 253, Constitution of India, the Parliament has the power to enact laws on matters in the State List to give effect to international agreements. The PWD Act, 1995 was enacted as a consequence of the signing of the Proclamation which was an international treaty.

Act 1 of 1996. The Act is available online at: http://www.ccdisabilities.nic.in/page.php?s=&t=pb&p=pwd_act (downloaded on 6.9.18).

As per the Gazette Notification issued by the Ministry of Social Justice and Empowerment dated 19.4.2017.

This shift in thinking was addressed by Justice Dr. A.K. Sikri in Rajive Raturi v.  Union of India ( 2018 ) 2 SCC 413.

The Right to Education Act, 2009 puts a mandate on all schools including the private schools to reserve 25% seats for the children from the economically weaker section of the society. The objective it to reduce the inequality and follow a policy of inclusiveness.

Section 2( r ) “person with benchmark disability” means “a person with not less than forty per cent of a specified disability where specified disability has not been defined in measurable terms and includes a person with disability where specified disability has been defined in measurable terms, as certified by the certifying authority.”

Section 41. (1) The appropriate government shall take suitable measures to provide—(a) facilities for persons with disabilities at bus stops, railway stations, and airports conforming to the accessibility standards relating to parking spaces, toilets, ticketing counters, and ticketing machines; (b) access to all modes of transport that conform the design standards, including retrofitting old modes of transport, wherever technically feasible and safe for persons with disabilities, economically viable and without entailing major structural changes in design; and (c) accessible roads to address mobility necessary for persons with disabilities. (2) The appropriate government shall develop schemes programmes to promote the personal mobility of persons with disabilities at affordable cost to provide for—(a) incentives and concessions; (b) retrofitting of vehicles; and (c) personal mobility assistance.

Section 42. The appropriate government shall take measures to ensure that—(i) all contents available in audio, print, and electronic media are in accessible format; (ii) persons with disabilities have access to electronic media by providing audio description, sign language interpretation and close captioning; and (iii) electronic goods and equipment which are meant for everyday use are available in universal design.

Section 33. Identification of posts for reservation—The appropriate government shall—

identify posts in the establishments which can be held by respective category of persons with benchmark disabilities in respect of the vacancies reserved in accordance with the provisions of Section 34;

constitute an expert committee with representation of persons with benchmark disabilities for identification of such posts; and

undertake periodic review of the identified posts at an interval not exceeding three years.

Section 34. Reservation-(1) Every appropriate government shall appoint in every government establishment, not less than four per cent of the total number of vacancies in the cadre strength in each group of posts meant to be filled with persons with benchmark disabilities of which, one per cent each shall be reserved for persons with benchmark disabilities under clauses ( a ), ( b ) and ( c ) and one per cent for persons with benchmark disabilities under clauses ( d ) and ( e ), namely:- ( a ) blindness and low vision; ( b ) deaf and hard of hearing; ( c ) locomotor disability including cerebral palsy, leprosy cured, dwarfism, acid attack victims and muscular dystrophy; ( d ) autism, intellectual disability, specific learning disability and mental illness; ( e ) multiple disabilities from amongst persons under clauses ( a ) to ( d ) including deaf-blindness in the posts identified for each disability:

Provided that the reservation in promotion shall be in accordance with such instructions as are issued by the appropriate government from time to time:

Provided further that the appropriate government, in consultation with the Chief Commissioner or the State Commissioner, as the case may be, may, having regard to the type of work carried out in any government establishment, by notification and subject to such conditions, if any, as may be specified in such notifications exempt any government establishment from the provisions of this section.

(2) Where in any recruitment year any vacancy cannot be filled up due to non-availability of a suitable person with benchmark disability or for any other sufficient reasons, such vacancy shall be carried forward in the succeeding recruitment year and if in the succeeding recruitment year also suitable person with benchmark disability is not available, it may first be filled by interchange among the five categories and only when there is no person with disability available for the post in that year, the employer shall fill up the vacancy by appointment of a person, other than a person with disability:

Provided that if the nature of vacancies in an establishment is such that a given category of person cannot be employed, the vacancies may be interchanged among the five categories with the prior approval of the appropriate government.

(3) The appropriate government may, by notification, provide for such relaxation of upper age limit for employment of persons with benchmark disability, as it thinks fit.

Section 35. Incentives to employers in private sector—The appropriate government and the local authorities shall, within the limit of their economic capacity and development, provide incentives to employer in private sector to ensure that at least five percent of their work force is composed of persons with “benchmark disability.”

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Bedi, S. (2019). The Differently Abled: Exploring the Rights and Legislation in India. In: Halder, S., Argyropoulos, V. (eds) Inclusion, Equity and Access for Individuals with Disabilities. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-13-5962-0_2

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I’m Disabled. Please Help Me.

I’ve come to understand that being nearly blind means my reliance on others is permanent. But I have not completely accepted this.

One cold November morning, I was on Seventh Avenue and 50th Street in Manhattan, on my way to a Dunkin’ Donuts. For most people, such an excursion is not a particularly exciting part of the day. But when you are almost blind, as I am, the expedition has a certain complexity.

I knew the shop was somewhere just past the northeast corner on 50th, but when I got there, I could not identify the correct storefront. The cane I walk with can prevent me from slamming into a wall or tumbling down a staircase, but it can’t distinguish a donut shop from an Indian restaurant or a dry cleaner. I wandered back and forth, hoping a whiff of chocolate would guide me to the right doorway. No luck. I was stranded on the street, unable to find my way but also unwilling to return to my hotel sans latte.

Obviously, I had to seek help. But doing so has always made me feel uncomfortable, embarrassed, and vulnerable—potential quarry of the unscrupulous and uncaring. I made one rather meek and unsuccessful attempt to get someone’s attention.

The kindness of a stranger eventually rescued me from my predicament and my recalcitrance.

Read: The competitive world of blind sports

“Are you lost?” a woman (probably elderly, based on her voice) asked. I told her what I was looking for. “It’s over here,” she responded.

I followed her, and she opened the Dunkin’ Donuts door for me. Turns out I had passed it by about 20 feet. I thanked her profusely, then returned to my hotel, latte in hand.

New Yorkers are especially adept at aiding the disabled. On two occasions, people insisted on helping me hail a taxi, then waited to make sure I got into the back seat. A young woman approached me at a crosswalk to politely inform me I could safely cross the street. A doorman voluntarily escorted me down 55th Street to a restaurant.

Relying on the generosity of random strangers is not how I want to live my life. No one likes to be a burden on others. Yet the harsh reality is that I am. Those around me, most of all my family and friends but also anyone I happen to encounter over the course of a day—waiters, store clerks, taxi drivers, assorted pedestrians—are obliged to assist me, whether I (or they) like it or not. There’s no other way for me to get through life.

This unsettling feeling of dependency is new for me. I started referring to myself as “disabled” just a few months ago. My condition—a genetic retinal disorder called retinitis pigmentosa—causes my eyesight to deteriorate over time, so although I have never been fully sighted, I had long been able to go about life with a fair degree of independence.

Beginning in my teens, my goal was to be “normal,” or at least to appear “normal.” I tried to do whatever everyone else was doing. That included learning to drive. I took the wheel of my mom’s Volvo on my own only a couple of times before turning in my keys for good, but I’d made my point: Getting a driver’s license was a rite of passage for any New Jersey teenager, and I refused to be different.

No one could tell me otherwise. The doctor who diagnosed me in my teens recommended that I choose a career that would not require good vision. The next, a well-regarded retinal specialist in New York, prattled off a list of activities I should not do, which included playing sports and riding a bicycle. He advised that I carry a flashlight in the dark—an early symptom of my condition is night blindness—which I quickly discovered was of absolutely no help. No one, not even supposed experts, truly understood what it was like to live with my problem. I kept riding my bike.

To the greatest extent possible, I tried to conceal my condition—not because I was embarrassed but because I didn’t consider it anyone’s business. Asking for special accommodations was simply out of the question. That could invite discrimination. Best not to talk too much.

In the mid-2000s, I was a correspondent for Time magazine based in Hong Kong. A top editor asked me during a visit to the New York headquarters whether I wanted to join the Baghdad bureau. Of course I did, but my blindness has always placed some constraints on my activities. At the time, Iraq was in the throes of chaos. No military organization would have sent me there, so I wasn’t about to go with a media organization. The editor either didn’t know I was almost blind or wasn’t bothered by it. I didn’t intend to blurt it out. I reminded him that I was the economics correspondent.

“You’re a pro—we’ll train you up,” he said.

“The bloodiest thing I ever covered was a stock-market crash,” I told him.

The concern that prompted my reticence was not unfounded. Disabled people often face discrimination that goes unrecognized. The unemployment rate among the disabled in the United States was more than 7 percent in 2023, twice as high as for the workforce overall.

“We still have a long way to go” to address discrimination against the disabled, Sara Minkara, the special adviser on international disability rights at the U.S. State Department, told me. “Disability is not yet normalized in our society.”

The problem is that “accessibility is seen as an add-on, as a burden,” she continued. “When you embrace and integrate and include persons with disability, it will benefit society at large. We have value to contribute.”

From the March 2023 issue: Society tells me to celebrate my disability. What if I don’t want to?

I’ve been fortunate that my employers have realized this and for the most part treated me no differently from anyone else. My career has taken me across the globe, from Madrid to Moscow to Mumbai, entirely on my own. I got trapped in the middle of a military mutiny in Manila, fought off thieves in Geneva, and dodged my government minder in Pyongyang.

Now I can’t find a Dunkin’ Donuts in Midtown Manhattan. The transition has not been easy. I began walking with a cane about four years ago, and not only is it a pain in the ass; it is an advertisement that I’m handicapped. No more hiding.

Some abled people who can see, hear, and walk treat me as if I’m broken, and thus incapable. They meet disabled people who show that we can actually do things with bewildered wonder, as though we’re miracles of humanity. At immigration in Beijing’s airport a few weeks ago, an officer started asking questions about The Atlantic —addressing my wife, not me, because I apparently also can’t hear or speak.

“What's wrong with him?” he asked.

“He’s visually impaired,” she answered.

“And he works?” came the response.

A member of the security staff at the airport in Singapore very politely insisted that I sit while he examined me; because I can’t see, he seemed to assume, I also can’t stand.

At other times I’m treated as more object than human. I was waiting for an elevator in my apartment building’s lobby the other day when a man standing beside me, apparently assuming that I would not be able to see one arrive, grabbed my jacket at the shoulder as though to drag me inside like a piece of luggage. Try that on a sighted person and you’d probably get punched or arrested. Walking near my apartment recently, I came upon several mothers with baby carriages arranged haphazardly in front of me. Though I had my white cane, none deemed it necessary to move out of my way, and as I attempted to navigate among them, one mom, thinking I might slam into her carriage, reached out and shoved me backwards.

“The discourse and conversation around disabilities historically has been shaped by people without disabilities, and that is a huge problem,” Bonnielin Swenor, the director of the Disability Health Research Center at Johns Hopkins University, told me.

“We have created a societal view that it is an evil, awful thing,” Swenor (who also happens to be visually impaired) continued. “For many, that view is a by-product of what we have learned, what society has taught us, and that we are living in a world that is not built for us.”

It certainly isn’t. Revolving doors at office towers might as well be called “blind-person milling machines.” Try finding the bottle of vitamins you want on a CVS shelf or minding the gap on the S train at Times Square without plunging to the tracks. Beijing, where I currently reside, is a death trap for the disabled. Every time I cross a chaotic street, I fear I’ll end up like the often-unfortunate amphibian in the old video game Frogger . I’ve thought of writing a James Bond movie script in which the bad guy is blind and intent on destroying the world in order to rebuild it to suit the disabled.

Short of that, I’ve been forced to foist certain responsibilities onto others, most of all my wife, who is stuck with me more than anyone else. She has to fill out paper forms for me and locate the right pair of pants at a Uniqlo. Sometimes when I’m home alone, I drop something and can’t find it. “Somewhere on the kitchen floor is a grape,” I tell her upon her return.

I have little choice, but the feelings of guilt persist, making me reluctant to seek help. Flying on my own has become a trial. I dare you to find your suitcase on a baggage-claim carousel blindfolded. But I can’t bring myself to request assistance from the airline. I still assume I’ll figure it out along the way. My wife, worried I won’t, contacts airlines for me.

She’s right. I’ve been thinking about this the wrong way, insisting on a faulty mental construct—the myth, that is, that we should all be independent. None of us is, really. We rely on one another all day long, in all kinds of ways—parents taking turns driving their kids to soccer practice, a daughter escorting her elderly mother to the doctor, office workers contributing to a team project. So I need help finding a Dunkin’ Donuts. What’s the big deal?

Swenor and other advocates call for reform in how the abled think and talk about the disabled, and in how we think about ourselves. “This is all about creating a society that includes disabled people, and changing that perspective from ‘lesser’ and ‘can’t,’” she told me. As part of an advisory committee, Swenor advocated for the National Institutes of Health to remove the language about reducing disability from its mission statement, a proposal that has won a fair amount of support. “Up until now, the investment and the conversation has almost myopically been on curing and eliminating” disabilities, Swenor said. But disability isn’t going to disappear, so more emphasis should be placed “on creating structures and systems and a more equitable society.”

This resonates with me. At the moment, there is no treatment or cure for my condition. I can’t change to adapt to the world; the world will have to adapt to me.

Of course, I realize that won’t happen, or at least not to a degree that would make me substantially more independent. However much we spend to make cities more accessible, or whatever technology we try to introduce, I will still routinely encounter hazards and problems that I cannot resolve on my own. My reliance on others is permanent.

Still, much can be done. Tweaking language is a start, but barely one, and not always helpful anyway. I’ve recently noted public toilets labeled for the “differently abled” rather than the “disabled.” That’s adorable and well intentioned. But it’s also wrong. I’m not able to do things “differently” from others; I lack capabilities, and this makes me unable to perform certain tasks. I have to worry about accidentally peeing on my shoe; most people don’t. More helpful than switching the signage would be to brighten the lights in these typically dimly lit spaces and stop hiding the soap behind stylish mirrors. Better still, let’s not use disabled toilets as storage closets or illicit smoking dens. At an airport lounge in Hong Kong recently, the staff kept the disabled restroom locked, apparently so they wouldn’t have to clean it.

From the September 2023 issue: The ones we sent away

The campaign against discrimination can also go too far. One of the world’s most popular YouTube stars, known as MrBeast, has come under fire for engaging in what’s called “inspiration porn.” He spends significant sums on hearing aids, cataract surgeries, and other medical assistance for the needy, then posts videos of the result. Critics accuse him of exploiting the disabled and misrepresenting their true struggles.

The genuinely charitable don’t need to advertise their virtuous deeds on YouTube. But who cares? Providing hearing aids to the impaired and impoverished can change their life by allowing them to work more easily and gain greater independence.

Discouraging those who want to help serves no one. Our lives are spent bumping into one another (in my case, too often literally). A few of those interactions, with family and close friends, can be complex and durable; some last a lifetime. The majority are temporary, even fleeting. Some of these can be of great consequence—the emergency-room doctor who treats your broken leg, for instance. Most are of lesser significance—the friendly woman who served your eggs and toast this morning, the person who held a door open, the Uber driver who lifted your suitcase into his trunk. In each of these innumerable daily encounters, we assist one another, sometimes so automatically that we don’t recognize our actions as indicators of our perpetual interdependence. In that light, my life is pretty normal after all.

Or so I tell myself. I have come to understand that the disabled will always rely on the goodwill and generosity of others. But I have not completely accepted this. The craving for lost independence, the fear of dependency, will persist, and perhaps even intensify as I descend further toward blindness. That feeling, too, seems an inevitable part of life. So if you see a middle-aged guy with a white cane aimlessly wandering on 50th Street, lend a hand. He’ll appreciate it.

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Inclusive Education for Differently Abled Child: A Step towards Equality

Dr. leena moudgil.

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Associate Professor at Vivekananda Institute of Professional Studies, GGSIPU, Delhi

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India is a massive country of young generation with 65% population below 35 years and 2.1% of population are differently able persons. A country can only grow when people are treated equally before law and education is accessible to all. Equality means to prevent discrimination and providing remedies for the same. Inclusive education is a step in this direction and it provides a stride towards societal development. It provides a learning platform where differently able child study with normal child for academic, social, behavioural and professional development. UNESCO Agenda 2030, Sustainable Development aims to “ensure inclusive and equitable quality education and promote lifelong learning opportunities for all. Several reports have highlighted upon the steps required in this direction. Art. 21-A, Constitution of India is given a wider interpretation which resulted in Right to Education Act, 2010. In 2016, Right of Persons with Disability Act is enacted, which repealed 1995 Act, and follow principles of respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. The paper looks into positive and negative implications of present legislation. The total number of children with disabilities (in the age group of 0–19 year) is 7,864,636. In spite of having provisions laid down in various legislations to include differently able in the society, still large number of differently able children feel 'left-outs' and thus ‘drop-out’, as they are unable to cope pressure. The utmost need is the exposure of teachers, sensitisation of children and differently able friendly attitude with quality education. The author looks into challenges in implementation of statute, differences among other modes and judicial approach towards the existing scenario.

• IEDC Scheme
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International Journal of Law Management and Humanities, Volume 4, Issue 3, Page 146 - 160

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This is an Open Access article, distributed under the terms of the Creative Commons Attribution -NonCommercial 4.0 International (CC BY-NC 4.0) (https://creativecommons.org/licenses/by-nc/4.0/), which permits remixing, adapting, and building upon the work for non-commercial use, provided the original work is properly cited.

Copyright © IJLMH 2021

I. Introduction

The contribution of an individual ushers towards societal development and so a contribution of each and every human being including differently abled leads us to the path of equality. Equality means to prevent discrimination and providing remedies for the same. A differently-abled person has physical, sensory, intellectual or mental impairment and so his prospects of securing, returning to, retaining and advancing in suitable employment, are substantially less. [2] For the development of society as a whole, education to all is required. Education is the gateway to full participation in society [3] and Inclusive education is the next step towards this goal. Inclusive Education (IE) is a new approach towards educating the children with disability and learning difficulties with that of normal ones within the same roof. [4] Inclusive Education denotes that all children irrespective of their strengths and weaknesses will be part of the mainstream education. [5] Inclusive education provides a learning platform where differently abled child study with normal child for academic, social, behavioural and professional development. It is potentially both a process and an outcome for achieving social justice and equity in our society. [6] According to 2011 census, India has 65% population below 35 years [7] and 2.1% population of differently abled persons. [8] The total number of people with disabilities in the country is about 26 million. The total number of children with disabilities (in the age group of 0–19 year) is 7,864,636.

Nearly 2.6 million disabled children either did not see the inside of a school or had to drop out and only 4 million which is 61% of India’s 6.6 million disabled population in the 5-19 age group were studying in an educational institution in 2011. The proportion of children studying in a school was higher for the total population by 10 percentage points (71%). Of the rest, 27% (1.75 million) children with special needs never attended any school, while 12% (0.8 million) had dropped out of school. [9]

In school, one of the problems is lack of accessibility of resources. This includes not only educational resources but also includes infrastructure and transportation friendliness. The educational resources which are viable for one child may not be viable for visually challenged or mentally challenged child. Less availability of resources in Braille or audio clipping or visual clipping or audio- visual clipping or lack of experiential learning tasks causes a downfall. Another problem is disgrace or insult or laugh at or ignorant attitude of people. The differently abled child needs from us to an empathetic attitude and not sympathetic or apathetic. We try to teach differently abled child how to behave in society but we are lacking when we are not teaching the normal child to be empathetic. The Salamanca Statement and Framework of Action on Special Needs Education,1994 quotes

“Regular schools with inclusive orientation are the most effective means of combating discriminatory attitudes, creating welcoming communities, building an inclusive society and achieving education for all, moreover, they provide an effective education to the majority of children and improve the efficiency and ultimately the cost-effectiveness of the entire education system.”

The research paper looks into the various International Conventions, legislative provisions, reports and judicial pronouncements. Also, the various schools which have worked for inclusive education,

II. International conventions

Disability is an umbrella term, covering impairments, activity limitations, and participation restrictions, impairment is a problem in body function of structure. [10] In different conventions human rights and lately, education has been discussed. In 1948, Universal Declaration of Human Rights is adopted wherein the States first recognized the human right to education internationally. However, it is in 1960, UNESCO adopted its Convention against Discrimination in Education. The concept of inclusive education is contained implicitly in Article 13, paragraph 1 in International Covenant on Economic, Social and Cultural Rights, 1966. Article 13 highlights education’s role of enabling, “all persons to participate effectively in a free society”. [11] The right of everyone to free and compulsory primary education as well as, progressively, to free secondary and tertiary education. After 23 years, in 1989 the Convention on the Rights of the Child discussed it under Articles 23 relates specifically to children with disabilities, by imposing an obligation on States to ensure that children with disabilities have “effective access to and receive education, training, health-care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child’s achieving the fullest possible social integration and individual development”. Article 29 focuses on the purpose of education. This is ratified by India in 1992.

UN Standard Rules for Persons with Disabilities, 1993 Rule 6 laid down responsibility on State for the education of persons with disabilities in integrated settings by making a clearly stated policy, understood and accepted at the school level and by the wider community; allow for curriculum flexibility, addition and adaptation; provide for quality materials, ongoing teacher training and support teachers.

In the World Conference on Special Needs Education, 1994 the Salamanca Statement and Framework for Action on Special Needs Education is adopted. It is for the first time inclusive education is discussed expressly. The Salamanca Statement of UNESCO asserts that education for all could not be achieved without including all types of learners in one learning environment. Convention on the Rights of Persons with Disabilities, 2006 established an obligation of States to ensure an inclusive education system. It aims on full participation of persons with disabilities in schools, colleges, communities and workplace. Article 7 provides for full enjoyment of all human rights and fundamental rights on an equal basis with other children, best interests of the child, right to freedom of expression and Article 24 provides inclusive education systems at all levels, access to inclusive, quality and free primary and secondary education, reasonable accommodation and support within general education system. India is a signatory State to the Convention and consequentially Rights of Persons with Disabilities Act, 2016 is enacted.

The World Education Forum, 2000 held in Dakar reiterated the need to focus on access to education and inclusion for learners from disadvantaged or marginalized backgrounds. Inclusion requires responding to the diversity of needs among all learners, through increasing participation in learning, cultures, and communities, and reducing exclusion from and within education. [12]

UNESCO Agenda 2030, Sustainable Development, Goal 4 aims to “ensure inclusive and equitable quality education and promote lifelong learning opportunities for all”. [13] This objective means that a school can only be inclusive when all its students are able to access its resources and participate in its activities without exception. Children with disabilities should not be left behind.

III. Legal perspective in india

The concept of inclusion is based on the premise that all children and adults are part of society and that the community helps in the development of resources where all children are equally valued and have the same opportunities for participation. [14] Traditionally, the education in schools is covered under two heads, general and differently abled. In 1826, Raja Kali Shankar Ghosal started first learning facility for the visually handicapped in Varanasi. [15] The first school for blind was established at Amritsar in 1877. Mahatma Gandhi once said, “Education is a powerful instrument of social revolution. Higher education is essential to obtain knowledge and seek better jobs, and thereby develop self-confidence.” [16]

After Independence, the Constitution of India, 1950 in the Preamble provides right to equality, justice and liberty. The differently abled person fundamental rights are secured under following provisions. Article 14 provides equality before law and equal protection of law. At a broad level, this connotes the right to participate in society and contribute as meaningfully as the others. [17] The differently able person has the right to life and liberty guaranteed under Article 21 of the Constitution. Right to life includes the right to live with dignity. Also, Articles 15, 16, 17, 23, 24, 25 and 32 are the other provisions. Article 29(2) provides that no citizen shall be denied admission into any educational institution maintained by the State or receiving aid out of State funds on the ground of religion, race, caste or language. Article 45 of the Constitution directs the State to provide free and compulsory education for all children (including the differently able) until they attain the age of 14 years.

Also, several legislations are framed from time to time. In 1992, Rehabilitation Council of India (RCI) Act was enacted which provides minimum standards in training and qualification for rehabilitation professionals. It dealt with the development of manpower for providing rehabilitation services. The standards for rehabilitation are earlier not provided. It also established consequences for teaching without a license with imprisonment up to one year, be fined Rs.1000 or both. Later by amendment in the year 2000, establishment of statutory mechanism for monitoring and standardizing courses for the training of professionals required in the field of special education are included. The responsibility is on RCI to train special educators and resource teachers that can offer support services to children with disabilities in regular schools.

People with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 provides about the education of children with disabilities up to the age of 18 years in an appropriate environment endeavour to promote integration of students with disabilities in the normal schools. [18] However, there are various lacunas noted in 1995 Act as the definition of person is based purely on the ‘degree of disability’, definition of mental illness is narrow [19]  and features under education were less.

In 2016, Rights of persons with Disabilities Act (RPWD Act) is enacted. It repealed 1995 Act. The new Act provides about inclusive education institutions, inclusive employment policies and non- discrimination and employment and right to participate in cultural life, recreational activities and sporting activities. The appropriate Government and the local authorities shall endeavour that all educational institutions [20] admit them without discrimination and provide education and opportunities; making building, campus and various facilities accessible; providing reasonable accommodation; necessary support individualised or otherwise in environments that maximise academic and social development; ensuring that the education to persons who are blind or deaf or both is imparted in the most appropriate languages and modes and means of communication; detect specific learning disabilities; monitor participation, progress and completion of education.

Also, the appropriate Government and the local authorities [21] shall take the measures to conduct survey of school going children in every five years. However, the fact to be noted is that there is no penal provision for making the State for non- performance of its obligation. 79.2% States have not allocated State funds and 58.3% States have not notified State rules. [22]

The amendment of 2015 in Right to Education Act, 2010 provided disadvantaged groups to be included in the definition of “persons”. Section 3 provides that a child with disability in Section 2 (ee) (A) shall without prejudice to the provisions of the Persons with Disabilities Act, 1995, and a child referred in Section 2 (ee) (B) and (C) will also have the same rights to pursue free and compulsory elementary education which children with disabilities have. Special Learning Disabilities Bill, 2016 that covers teacher training needs, surveys and campaigns.

In 2017, the Three-Year Action Agenda of the Niti Aayog recognized the challenges such as absence of ramps, disabled-friendly toilets, special teaching materials and sensitized teachers. However, the targets are limited to schools having at least one section of each class accessible under Universal Design Guidelines [23] , providing aids to approximately 3.5 lakh beneficiaries every year, and conducting cochlear implant and corrective surgeries for 5,000 children on a yearly basis.

IV. Role of society

Inclusion involves changes in content, approaches, structures, and strategies, driven by a common vision that covers all children and the conviction that it is the responsibility of the regular system to educate all of them. [24] The stakeholders responsible are learners, parents, community, teachers, administrators and policy makers. Parents need to create awareness for inclusion. Despite the measures taken to include differently abled in the society, yet large number of children feels ‘left-outs’, or ‘drop-out’, or disinterested to cope pressure. Right to education requires the education for differently abled stressing upon individual needs also. Skills that make them independent are required and not traditional. Teachers must develop their knowledge and skills, and an understanding of key strategies. [25]

Lack and improper utilisation of funds, less inclusive schools, large class size and rigid curriculum hampers the differently abled from education. The government initiatives in the area of inclusive education can be traced back to National Educational Policy, 1986. [26] India has introduced several schemes Education at three levels is studied up to 6, 6-14, 14-21 yrs. Goa is pioneer in opening inclusive schools. [27] Several reports have expressly or impliedly discussed regarding education.

The Sargent Report, 1944 by the Central Advisory Board of Education proposed a system of universal, compulsory and free education for all boys and girls between ages of six and fourteen. [28] It suggested that children with disabilities should be entirely mainstreamed. [29] The government organised workshops and separated trade schools from those for schools where students without disabilities to teach children with disabilities skills to enter the workforce. Large number of NGOs came up to establish special schools. Most of these segregated schools were expensive and located in urban areas, further marginalizing people with disabilities in rural areas.

In 1964, Kothari Commission created a plan of action to improve the education system and to include people with disabilities. [30] It stressed that proper education generally enables a handicapped child to overcome largely his or her handicap and make him into a useful citizen. Also, social justice demands it. But, the Government never implemented the recommendations. [31]

In 1968, the National Policy on Education (NPE) suggested the expansion of educational facilities for physically and mentally handicapped children, and the development of an ‘integrated programme’ enabling handicapped children to study in regular schools. [32] In 1986, NPE encouraged to prepare them for normal growth and to enable them to face life with courage and confidence. Later, in 1992, NPE broadens the definition of who should be included in mainstream schooling, that “a child with a disability who can be educated in the general school should not be in the special school.”

 In 1974, the Integrated Education for Differently abled Children (IEDC) was introduced, centrally sponsored scheme, to provide equal opportunities to children with disabilities in general schools and facilitate their retention. [33] Integrated Education of Differently abled Children (IEDC), revised in 1992, is a national level central government sponsored scheme where one resource teacher was given to every 8 children with special needs. It suffers due to quality of resource persons, government teachers and time in travel spent. Children were either pulled out from regular classes for resource teaching or they were asked to come before school and stay back. In 2009, IEDC created the Inclusive Education of the Differently abled at the Secondary Stage (IEDSS) and considers resources for differently abled in ages 6-14 under Sarva Shiksha Abhiyan.

“The Centrally Sponsored IEDSS Scheme aims to enable all students with disabilities completing eight years of elementary schooling an opportunity to complete four years of secondary schooling (classes IX to XII) in an inclusive and enabling environment. It provides educational opportunities and facilities to students with disabilities in the general education system at the secondary level (classes IX to XII) and supports the training of general school teachers to meet the needs of children with disabilities at the secondary level.

The objectives of the scheme are to ensure that every student in need of aids and appliances, assistive devices and learning material be provided the same, architectural barriers in schools are removed, supplied learning material as per his/her requirement. All general school teachers at the secondary level will be provided basic training to teach students with disabilities within a period of three to five years. Appointment of special educators and establishment of resource rooms in every block. Model schools are set up in every state to develop good replicable practices in inclusive education.”

In 2009, Rashtriya Madhyamik Shiksha Abhiyan (RMSA) is launched to make secondary education of good quality available, accessible and affordable. The scheme envisages increasing the number of children enrolled for classes IX-X within 5 years by providing a secondary school within a reasonable distance of every habitation, improving quality of education imparted at secondary level through making all secondary schools conform to prescribed norms, removal of gender, socio-economic and disability barriers. One of the 12th Plan Goals for the Secondary Education sector is to achieve near-universal enrollment in secondary education, with the GER exceeding 90 per cent by the 2017. [34]

National Trust has launched ‘Inclusive India Campaign’, 2015. The Inclusive India initiative attempts to facilitate the realisation of equal opportunities, protection of rights and full participation of individuals with intellectual and developmental disabilities into the fabric of society. [35] The three core focus areas are Inclusive Education, Inclusive Employment and Inclusive Community Life. Inclusive Education will make awareness campaigns so that schools and colleges provide inclusive for the children and adults with intellectual disabilities. There are different schemes [36] on education like:

• DISHA- This is an early intervention and school readiness scheme for children in the age group of 0-10 years. It aims at setting up Disha Centres for therapies, trainings and providing support to family members.
• VIKAAS- This scheme provides for enhancing interpersonal and vocational skills as they are on a transition to higher age groups.
• GYAN PRABHA (Educational support) – The scheme aims to encourage PWD for pursuing educational/ vocational courses like graduation courses, professional courses and vocational training leading to employment or self-employment.
• BADHTE KADAM – This scheme aims to create community awareness, sensitisation, social integration and mainstreaming of Persons with Disabilities. There are other schemes also. [37] At present, National Trust is focussing upon awareness about inclusion.

About 19.67 crore of children are enrolled in 14.5 lakh elementary schools across the country with 66.27 lakh teachers deployed under the SSA. [38] However, the teachers appointed under the scheme have not been regularised. [39] The Centre is now considering merging both SSA and RMSA and wants and will consult the States. Despite all these recommendations, there are number of schools forcing specially-able kids to drop out is in thousands exists. [40] NCERT has been constantly working with UNESCO and been organising workshops to assess Inclusive Education in India. In 1987, NCERT in co-operation of UNICEF launched a project IEDC which helped in increasing the number of differently abled in school. [41] NCERT has come up with series of 40 booklets to allow specially-able child read a book. [42]

VI. Contribution by schools

In 1985, Air Force Golden Jubilee Institute started as a school only for the mentally retarded children but subsequently it was felt that an integrated Institution was a better option, which would provide the mentally handicapped children, an opportunity of receiving education in the atmosphere of a normal school.

The Cathedral and John Connon Middle School, Mumbai encourages inclusive education and awareness. It sensitises the students and difficulties faced by special needs. It creates an environment to have different learners. It is affiliated with Jai Vakeel Foundation where the students interact with specially-abled children.

The Shriram School, Vasant Vihar provides inclusive education. All teachers are trained in strategies to teach children with disabilities. The members of school took a pledge that each child is included at all places not only in schools but also in parks and birthday parties. “I believe, that world is one community and each child is special and gifted. I pledge to embrace, to respect and include the different being. I support inclusive India.”

The Heritage School has been an Inclusive school since its inception in 2001. The family has grown to about 100 children and 12 Special Educators under the Special Needs umbrella. We cater to the needs of children with various needs like physical impairment, cognitive impairment, learning disabilities, ADHD and autism. We have learnt to be realistic in our expectations, to be better abled to bridge the gap between expectation and achievement and most importantly, to provide a happy, healthy environment for our students. [43]

More or less other schools are giving admission to differently abled children as per provisions of law and government orders. According to 2019, UNESCO Report there is 75% children with disabilities don’t attend schools in India. [44] The contribution from many more schools is required.

VII. Judicial innovations

In Unni Krishnan v. State of Andhra Pradesh [45] the Honourable Supreme Court held that ‘right to education’ is concomitant to fundamental rights and this right is available up to the age of 18 years. In the case of Social Jurist v . Govt. of NCT of Delhi [46] the Delhi High Court held that respondent should try to achieve teacher pupil ratio of 1:5 at the secondary level and 1:2 at the primary level. Also, equivalence to B.Ed. (SE) with B.Ed. (General) and to D.Ed. (SE) with D.Ed./TTC for the purpose of appointment of special teachers in all the schools in the State as well as schools run by local bodies namely NDMC, MCD and Cantonment Board and the service conditions of the special teachers shall be same as that of the regular teachers holding the qualification of general teachers. The school authorities shall ensure that each school shall have at least two special teachers and further that necessary teaching aids and reading materials are provided. Also, two or three schools in a cluster should avail the services of itinerant teacher as mentioned by NCERT in its affidavit. We also direct to start programmes to train in-service teachers as resource teachers so that they are equipped to take care of differently abled children and to start short term orientation programme for principals and educational administrators so as to sensitise them towards the needs of a differently abled children.

In the case of Sheikh Nasim v . Union of India, [47] the facts are that the Director of Education, Maharashtra on the basis of notification under IEDSS scheme has made appointments but later cancelled via order. Also, no show cause notice was served. The petitioners referred to IEDSS scheme. [48] The court held that the Director of Education has committed utter disregard to the principles of natural justice, without application of mind and by arbitrary exercise of powers and quashed such order.

However, in the case of Rajneesh Kumar Pandey v. Union of India (2016) made an observation contrary to RPWD Act, 2016 the Supreme Court observed that it is impossible to think that the children who are disabled or suffer from any kind of disability or who are mentally challenged can be included in the mainstream schools for getting education… The students who suffer from blindness, deafness and autism or such types of disorder may be required to have separate schools with distinctly trained teachers. This judgment negates inclusion.

In Harish Shetty v. Regional Director National Institute of Open Schooling   [49] case, Bombay HC stressed upon obligations on educational institutions to implement directions of Section 16, Right of Persons with Disability Act, 2016. The need is to have exposure of teachers, sensitisation of children and differently abled friendly attitude with quality education. In All Kerala Parents’ Association of Hearing Impaired v. State of Kerala [50] the matter before the Honourable Supreme Court was regarding applicability of Section 39, Persons with Disability Act, 1995 [51] . The Court held that the provision is clear and unambiguous and it applies to governmental educational institutions and also to the educational institutions receiving aid from the Government. [52]

In the case of  Disabled Right Group v. Union of India [53] , the petitioner has referred the UGC Guidelines for “Higher Education for Persons with Special Needs” that trainers to be sensitized towards disability and inclusion and respective societies/associations to ensure that the information about RPWD events/contests reaches the differently abled students also. Similarly, cultural activities with adequate modifications are to be made available. The Supreme Court observed “Disabilities Act is premised on the fundamental idea that society creates the barriers and oppressive structures which impede the capacities of person with disabilities… To ensure the level playing field, it is not only essential to give necessary education to the persons suffering from the disability, it is also imperative to see that such education is imparted to them in a fruitful manner. That can be achieved only if there is proper accessibility to the buildings where the educational institution is housed as well as to other facilities in the said building, namely, class rooms, library, bathrooms etc. Without that physically handicapped persons would not be able to avail and utilise the educational opportunity in full measure.” In the case of Jeevoday Education Society, Nagpur v. State of Maharashtra [54] , the Bombay High Court held that no distinction can be made amongst the students with disabilities at least while formulating welfare measures for their benefit. There is an obligation upon the State Government to provide necessary infrastructure to enable a mentally retarded student up to the age of 18 years to take education in neighbourhood school or then in a special school of his choice can be spelt out. That education has to be free and hence obligation is automatically cast upon the State Government to extend grants for that purpose.

In an affidavit filed by the petitioner in the  Shamnad Basheer v. Union of India  case  which is currently pending before the Supreme Court, the petitioner has highlighted that not even one seat was reserved for persons with disabilities by some national law universities. [55]

VIII. Conclusion and suggestions

The steps for inclusive education of differently abled are introduced to bring them up with mainstream. Several legislations and judicial pronouncements are incorporated, yet the number of school is less. Also, numbers of special educators, counsellors, occupational therapist have been less in comparison to set guidelines. Also, the schools till date do not have ramp or elevators to make it differently abled – friendly. The need of the hour is to translate the discussions, into action.

Following are the suggestions to make inclusive education a success:

• Development is required in three streams that are education, skill and dignity.
• An attitude of empathy rather than sympathy. It requires simple arrangements like support of schoolmates, acceptability by teachers to help in overcoming some of these problems. Preparation from school, teachers and parents is needed
• Don’t misunderstand the capability of any individual.
• Different teaching methods like experiential learning, models, audio and visual are needed.
• Harmony between legislations like RPWD Act and RTE Act should be established.
• Steps for Early childhood care and education are needed.
• Use of ICTs to promote inclusion.
• Awareness among service providers, officials and PWD.
• Proper utilization of financial and human resources.
• Services to reach rural people.
• The need is several teaching styles like interactive teaching, [56] alternative teaching, [57] parallel teaching [58] and station teaching [59] should be incorporated [60] .
• Role of Government and NGOs to expand into rural areas.
• Special educators to be treated at par with other teachers.
• RTE Act should provide about training for inclusive education.

[2] Vocational Rehabilitation (Differently able ) Recommendation, 1955 (No. 99) retrieved from www.ilo.org/dyn/normlex/en/f?p=1000:55:0::NO::P55_TYPE,P55…en ….Also,see www.businessanddisability.org/index.php/en/boxes

[3] https://www.unicef.org/sowc2013/files/SWCR2013_ENG_Lo_res_24_Apr_2013.pdf as accessed on July 3, 2020

[4] J D Singh, INCLUSIVE EDUCATION IN INDIA – CONCEPT, NEED AND CHALLENGES, DEC-JAN, 2016, VOL. 3/13 www.srjis.com DEC-JAN, 2016, VOL. 3/13 at 3222

available at https://www.researchgate.net/publication/301675529

[5] http://edudel.nic.in/ssa/8.pdf

[6] http://edudel.nic.in/ssa/8.pdf

[7] https://www.theguardian.com › Opinion › India elections 2014

[8] http://censusindia.gov.in/Census_And_You/differently able _population.aspx

[9] Aloke Tikku, “27% differently-able kids have never been to school: Census”, Hindustan Times https://www.hindustantimes.com/india-news/27-differently-abled-kids-have-never-been-to-school-census/story-NhGNoqTS4mmmua5lfaDZ0N.html

[10] Ajit Mondal and Jayanta Mete, Education of Children with Disabilities in India : Concern and Policy Perspective retrieved from http://www.caluniv.ac.in/academic/education_journal/7%20Education%20of%20Children%20 with%20Disabilities%20in%20India%20Concern%20and%20Policy%20Perpective.pdf

[11] This Article has formally acknowledged the Universal Declaration and elaborates further on education.

[12] http://www.ungei.org/resources/files/Equity_and_Inclusion_Guide.pdf as accessed on July 4, 2020

[13] N for Nose, State of the Education Report for India 2019: Children with Disabilities, UNESCO

[14] M. Puri and G. Abraham, Handbook of Inclusive Education for Educators, Administrators, and Planners (Sage Publications Pvt. Ltd., New Delhi , 2005 )

[15] http://shodhganga.inflibnet.ac.in/bitstream/10603/62666/9/10_chapter_01.pdf

[16] M.N.G Mani and others, See with the Blind, (Bangalore: Christoffel Blinden Mission, 1999), p. 111 retrieved from https://shodhganga.inflibnet.ac.in/bitstream/10603/103065/9/09_chapter%203.pdf

[17] OPINION: The SC ruling that a blind or a deaf person can’t be a judge goes against the Constitution’s spirit , Hindustan Times (2019), https://www.hindustantimes.com/analysis/the-sc-ruling-that-a-blind-or-a-deaf-person-can-t-be-a-judge-goes-against-the-constitution-s-spirit/story-tBHaxJ6uYL2xVcelFcqUFP.html (last visited May 5, 2021).

[18] Section 26, PWD Act,1995

[19] “Mental illness” as covered in 2016 Act means a substantial disorder of thinking, mood, perception, orientation or memory that grossly impairs judgment, behaviour, capacity to recognise reality or ability to meet the ordinary demands of life, but does not include retardation which is a condition of arrested or incomplete development of mind of a person, specially characterised by sub normality of intelligence.

[20] Section 16, RPWD Act, 2016

[21] Section 17, RPWD Act, 2016. The measures are for identifying children with disabilities; establish adequate number of teacher training institutions; to train and employ teachers, professionals and staff; to establish adequate number of resource centres to support educational institutions at all levels of school education; to promote the use of appropriate augmentative and alternative modes including means and formats of communication, Braille and sign language; to provide books, other learning materials and appropriate assistive devices to students with benchmark disabilities free of cost up to the age of eighteen years; to provide scholarships in appropriate cases to students with benchmark disability; to make suitable modifications in the curriculum and examination system to meet the needs of students with disabilities such as extra time for completion of examination paper, facility of scribe or amanuensis, exemption from second and third language courses; and to promote research.

[22] The sources of these data is DRIF, NCPEDP and NCRPD retrieved from https://www.thehindu.com/news/ national/disabilities-act-states-going-slow-on-roll-out-says-study/article25664949.ece

[23] As per the RPWD Act, ‘“universal design” means the design of products, environments, programmes and services to be usable by all people to the greatest extent possible, without the need for adaptation or specialized design and shall apply to assistive devices including advanced technologies for particular group of persons with disabilities.’ A checklist for Making Schools Accessible to Children with Disabilities has also been prepared. See UNICEF, Samarthyam and Accessible India Campaign (2016) retrieved from https://unesdoc.unesco.org/ark:/48223/pf0000368780/PDF/368780eng.pdf.multi as on July 7, 2020

[24] http://www.ungei.org/resources/files/Equity_and_Inclusion_Guide.pdf as accessed on July 4, 2020

[25] Including Children With Special Needs : Primary Stage, NCERT, 2014

[26] NPE, 1986 recommended, as a goal, ‘to integrate the handicapped with the general community at all levels as equal partners, to prepare them for normal growth and to enable them to face life with courage and confidence’

[27] The first school that started a resource room was in the year 2003 (Holy Cross High School,

Bastora, Goa). Subsequently three more schools with IE have been functioning in Goa, Chubby Cheeks, Spring Valley High School at Pilerne (2004), Jyot–Adarsh School at Margao (2006) and Lourdes Convent High School (2007). Presently around 14 schools are considered to be Inclusive Education schools.

The Social Welfare Department and the Education Department of Goa Government are the main nodal agencies and local NGOs like Sangath, Sethu and others are actively involved in spreading the concept and practice of IE in Goa. retrieved from http://shodhganga.inflibnet.ac.in/bitstream/10603/62666/9/10_chapter_01.pdf

[28] http://www.ncert.nic.in/departments/nie/degsn/pdf_files/INDEX%20FINAL%20FOR%20WEBSITE.pdf

[29] http://www.ijip.in/Archive/No84/18.01.004.20160484.pdf

[30] http://www.ijip.in/Archive/No84/18.01.004.20160484.pdf

[31] Aruna and Kuldeep Singh (et al) Inclusive Education in India retrieved from http://www.ijip.in

[32] Ajit Mondal and Jayanta Mete, Education of Children with Disabilities in India : Concern and Policy Perspective retrieved from http://www.caluniv.ac.in/academic/education_journal/7%20Education%20of%20Children%20wi th%20Disabilities%20in%20India%20Concern%20and%20Policy%20Perpective.pdf

[33] J D Singh, INCLUSIVE EDUCATION IN INDIA – CONCEPT, NEED AND CHALLENGES , DEC-JAN, 2016, VOL. 3/13 www.srjis.com DEC-JAN, 2016, VOL. 3/13 at 3223

[34] Rashtriya Madhyamik Shiksha Abhiyan (RMSA): भारत सरकार, शिक्षा मंत्रालय, Rashtriya Madhyamik Shiksha Abhiyan (RMSA) | भारत सरकार, शिक्षा मंत्रालय, http://mhrd.gov.in/rmsa_status (last visited May 5, 2021).

[35] Press Information Bureau, Government of India, Ministry of Social Justice & Empowerment http://pib.nic.in/newsite/PrintRelease.aspx?relid=164434 as on June 6, 2017 retrieved on October 5, 2017

[36] The National Trust , Ministry of Social Justice and Empowerment (MSJE), http://thenationaltrust.go v.in/content/scheme (last visited May 5, 2021).

[37] SAMARTH( respite home for orphans or abandoned, families in crisis and PwD from BPL & LIG families); GHARAUNDA (Group Home for Adults); NIRAMAYA (Health Insurance Scheme); SAHYOGI (Caregiver training scheme); PRERNA (Marketing Assistance) and SAMBHAV (Aids and Assisted Devices).

[38] Prakash Kumar “Centre contemplates merging SSA and  RMSA ”, Deccan Herald as on 27-Jun-2017

 http://www.deccanherald.com/content/619578/centre-contemplates-merging-ssa-rmsa.html

[39] SSA, RMSA teachers seek regularization, http://www.tribuneindia.com/news/ludhiana/ssa-rmsa-teachers-seek-regularisation/463867.html on September 7, 2017 retrieved on October 5, 2017

[40] Deepak Lavania, “Schools not friendly, thousands of disabled kids drop out, remain illiterate” www.timesofindia.indiatimes as on June 25, 2017 retrieved on June 5, 2020

[41] NCERT and Education for Differently able http://www.jagranjosh.com/articles/ncert-and-education-of-differently able -1287813322-1

[42] “NCERT books to make classroom inclusive” www.timesofindia.indiatimes

[43] Inclusive Education Policy , The Heritage School, http://www.theheritageschool.org/heritageschooli nternational/inclusion-policy.php (last visited May 5, 2021).

[44] India Today Web Desk, 75% of children with disabilities don’t attend schools in India: UNESCO, India Today (2019), https://www.indiatoday.in/education-today/news/story/unesco-report-says-75-5-year-old-children-with-disabilities-don-t-attend-schools-in-india-1561722-2019-07-04 (last visited May 5, 2021).

[45] 1993 SCR (1) 594

[46] (2009) 163 DLT 489

[47] 2016 SCC online Bom 5442

[48] The points of the scheme are covered in Reports part of the present paper.

[49] 2017 SCC online Bom 8266

[50] (2018) 2 SCC 410

[51] All Government educational institutions and other educational institutions receiving aid from the Government, shall reserve not less that three per cent seats for persons with disabilities.

[52] Now as 2016 Act is applicable, we make reference to Section 32, RPWD Act, 2016.

Section 32. (1) All Government institutions of higher education and other higher education institutions receiving aid from the Government shall reserve not less than five per cent seats for persons with benchmark disabilities. (2) The persons with benchmark disabilities shall be given an upper age relaxation of five years for admission in institutions of higher education.

[53] (2018) 2 SCC 397

[54] The petitioner , a society which runs a Special School for Mentally Challenged Children at Nagpur since last about 30 years. It is pleaded before the Bombay High Court that the State Government has avoided to formulate a policy which will permit release of proportionate increased or additional grants for institutes like that of petitioner, when the number of students taking education increase.

[55] Anusha Reddy and Namrata Dubey, Paving the Way to an Inclusive India, One Judgment at a Time, https://thewire.in/government/ro-postpones-scrutiny-of-nomination-after-congress-complains-aap-candidate-for-rs-polls-holds-office-of-profit as on January, 2018 and retrieved on July 8, 2020

[56] Here, teachers alternate roles of presenting, reviewing and monitoring instructions.

[57] One person teaches a small group and other monitors or teaches the remaining students.

[58] Students are divided into mixed ability groups and each co-teaching partner teaches the same material to one of the groups.

[59] Small groups of student rotate to various stations for instruction, review and/or practice.

[60] www.education.wm.edu

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My son is profoundly autistic. Please don’t say he’s merely ‘neurodiverse.’

Advocates are fighting to eliminate terminology that accurately describes my son and thousands of people like him — who can’t speak up for themselves..

I t was pure coincidence that I happened upon the bloody site. Hoping to surprise my son, I drove to his favorite walking trail, along a lakefront, where I caught sight of police officers in a tense confrontation. Three officers stood side by side in an impenetrable wall while instructing someone splayed out and writhing on the ground. I hope Zack doesn’t get distracted by this scene , I thought.

As I neared the trail, I saw Zack’s aide, slouched inside her car, fully absorbed in texting. She was supposed to remain beside him at all times, but he was not with her. I called out to her, “Where’s Zack?” as my throat tightened with the realization he was nowhere in sight. I began sprinting toward the police officers — only to discover with mounting horror that Zack was the scene they were dealing with.

He was ravaging his forearms with deep, mutilating bites, thrashing angrily on the ground, and then rising to charge at the officers, who patiently but sternly reminded him to “stay seated” and repeated “Don’t panic, you’re not in trouble.” Breaking into the scene, I began a frantic avalanche of contrition. “I’m so sorry, I don’t know what triggered this —” But I was abruptly cut off by an officer who stated calmly, “Yes, we understand who he is and that he’s petrified.”

Somewhere during his sojourn along the lake, Zack, who was 20 years old at the time, had abruptly sat down too close to a woman seated on a bench, who gingerly told him to put on a COVID mask — and Zack bit her on the shoulder for what he perceived as a reprimand. The woman immediately summoned the police, not in anger but in compassion, realizing this young man was seriously disabled and apparently unattended.

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“He’s not in trouble, the woman’s not pressing charges,” the officer assured me. “We’ve been trying to get him to recount a phone number of someone we could contact —” He halted, spying a robust purple bruise on my calf and deep bite marks encrusted with dried blood along my arms. His tone turned solemn. “I can only imagine what you’ve been through. I do understand.”

I stood in stunned silence. I was not prepared for them to be prepared. It had been 45 minutes since they first gathered around Zack with no identifying information, 45 minutes during which his very safety hinged not only on the instincts of a benevolent stranger whom he assaulted but on a shared understanding by all involved of his clinical identity — that Zack is profoundly autistic.

What’s remarkable about Zack’s behavior is how unremarkable it is. Autism has been on an inexplicable rise with no signs of a plateau. The Centers for Disease Control and Prevention estimates that 1 in every 36 children born today has autism, and 1 in every 4 of those will have “profound autism,” a clinical distinction for those with much higher needs than the more verbally and intellectually able people who also have an autism diagnosis. Individuals like Zack with profound autism have minimal or no expressive language and require round-the-clock care to assist with daily living activities and safeguard them from extreme behaviors such as self-injury, the destruction of property, and “elopement” — the term for running or wandering away from caregivers or secure locations.

But while parents like me struggle to manage our children’s dangerous impulses, a powerful cultural movement has taken hold that forbids open discussion of profound autism and its manifestations. Advocates for “neurodiversity” are seeking to eliminate the term “profound autism” — on the grounds, they say, that it makes it seem as if autism is always an affliction. And now they are bullying doctors, researchers, lawmakers, and the rest of society into ignoring truths about Zack’s disorder that define his life.

Sanitizing Zack’s diagnosis and intense needs is dangerous. That day out on the lakefront trail, my son’s safety turned on the officers’ ability to decode from his conspicuous behaviors that he has profound autism in particular. They told me they realized that Zack’s refusal to identify himself to them despite repeated requests stemmed from an inability to articulate salient information in a moment of acute stress. They employed a measured response to his rage by speaking in succinct, assertive phrases, repeating reassurances, and maintaining a physical distance. If they hadn’t had such precise training , which depends on recognizing precise clinical criteria rather than employing general descriptors such as “neurodiverse,” the scenario could have gone very differently — with his arrest, forcible restraint, and even suffocation and death.

The intimidation campaign

I embrace many of neurodiversity’s fundamental tenets, especially the idea that people with intellectual disabilities should be broadly accepted and included in society.

I’ve staked my career on this principle — I used to work in the US Department of Justice as a disability rights attorney. I witnessed firsthand the exclusion of people with physical and cognitive disabilities from the rituals of daily life most other people take for granted. And I believe parents and professionals must aspire to discern a child’s authentic needs rather than superimpose our own preferences on them or force them into compliant molds of “normal.” Our children do not need to be “typical” to thrive in a society designed for its vast majority, nor is that an attainable goal.

But the concept of neurodiversity is going into dangerous territory if diagnostic distinctions across the spectrum are now considered archaic and bigoted.

In 2021, the medical journal The Lancet published a report from a commission of worldwide medical experts who recognized the need for “profound autism” as a discrete diagnostic category. The backlash was swift and mighty.

Autistic self-advocates launched a virulent campaign to quash the term, arguing that it had arisen, in the words of self-advocate Julia Bascom , “because some parents . . . see their kids as needing different kinds of support and different levels of restriction. But they are wrong on all counts.” The Global Autistic Task Force on Autism Research, an advocacy group, responded to The Lancet commission by saying : “For more than 30 years, autistic people have resisted functioning labels as misleading and offensive.”

As neurodiversity advocates denounce any framing of autism as a disability that requires medical intervention, they demand more support systems for people with autism, such as independent living “that honors authentic forms of human diversity.” Groups like the Autistic Self-Advocacy Network, people who identify on social media as #ActuallyAutistic, and parent activists insist that there is no such thing as a “normal” brain, only relative differences that render all humans “differently abled.”

To them, frank discussions about profound autism give a distorted image of people like Zack as unpredictable, cognitively limited, and presenting more behavioral challenges than the general population. Except the image is not distorted. While it’s painful to accept, these descriptors are accurate. Over the course of a single day, Zack, who is now 23, might furiously pummel his head in rage, slam his body into a wall, and bite me hard enough to draw blood.

The neurodiversity advocates — whose members are distinguished precisely by their ability to advocate for themselves, as Zack cannot — are not illuminating the complexity of autism; they are castigating into submission anyone who dares to deviate from their accepted language.

Intolerance for the term “profound autism” is leaching into medical journals and doctors’ practices. Doctors who’ve devoted their careers to treating children who compulsively ravage their flesh and slam their skulls into the ground are now verbally castrated on social media and “canceled” from lectures so regularly that preserving their livelihood requires stifling crucial medical data . It’s become common for autism self-advocates to “shout down” researchers imparting medical data at conferences or to call the researchers out on social media for online hazing and threats by neurodiverse mobs.

Today, both experienced and newer autism researchers contemplate leaving the field because, as one University of California scientist, David Amaral , observed, “People are getting reluctant to give public presentations or to be too vocal about what they’re finding,” despite the fact that “science is supposed to be about communication.” Top research institutions like the National Institutes of Health (NIH), tasked with conducting clinical trials to illuminate the disorder, face vitriolic accusations of being “ableist” and uncomprehending of the very people they are trying to help.

After the The Lancet’s commission recognized “profound autism” in 2021, the journal published an article by a doctor who wrote: “Generally, physicians think that disability is medical, and that if a patient’s condition interferes with their daily life, they are disabled. This traditional, medical model of disability does not address societal factors that influence disability, nor does it recognize disability as a cultural identity. Viewing disability as an issue stemming from an impaired body can encourage physicians to view disabled patients’ quality of life negatively . . . and to offer treatments aiming to fix the patient.”

This is absurd. I know of no person with profound autism who proudly identifies self-mutilating or violent impulses as core to their “cultural” identity. There is nothing bigoted about striving to ameliorate dangerous behaviors.

More critically, it is not the role of medical researchers to kowtow to trending cultural demands at the expense of addressing medically life-threatening conditions. Erasing diagnostic distinctions will make it impossible to perform research into the behaviors that are associated with profound autism — research that could lead to drugs that could benefit people across the entire autism spectrum. Although about 27 percent of all people with autism have profound autism, the condition is already underrepresented in clinical trials, which typically exclude those with an IQ lower than 70.

Two years ago, my son was abruptly ensnared in a cycle of self-injury, physical assaults, and chronic insomnia that within days catapulted him into a dangerously manic state — during which he risked seizures and seriously injuring anyone in proximity to him. Introducing anti-psychotic medicine delivered the jolt of serotonin to Zack’s brain that allowed him to reclaim his stability. Might other medicines become available that would work better? A movement that vilifies any medical mention of “risk,” “limitations,” or extreme behaviors has the power to thwart the development of such urgently needed drugs.

I hope Congress hears parents like me

The Autism CARES Act, which allocates NIH-funded research and services, sunsets on Sept. 30. Fierce debates are already underway about what Congress should do when it reauthorizes this funding. On one side stand autistic self-advocates who rally against any research not explicitly approved by them. On the other are parents who are desperate for clinical advancements but are so engulfed in the daily ordeal of managing their profoundly autistic children’s aggression and property destruction that they are largely incapable of organizing. The few dedicated parents calling for NIH to set aside funding to specifically address “profound autism” are vastly outnumbered by neurodiverse advocates who seek to block the act from passing if such “stigmatizing” language is included.

The loudest voices seek to abolish all spending on autism medical research and replace it with select services, such as workforce initiatives, that assist only those with milder autism. It’s here that the idea of neurodiversity poses the greatest threat — a movement that celebrates autism in all its forms, and depicts even the most severe afflictions as “merely a difference,” vehemently opposes any investigation into autism’s causes as ableist.

The truth is that we still don’t know what explains the steep rise in autism — perhaps it’s the product of widespread environmental contaminants altering our children’s brains — and this increase needs urgent attention. As these children age, state programs already strained by the deluge of adults needing lifelong services threaten to collapse entirely. Capitulating to self-advocates’ demands amid a global proliferation of one of the gravest disorders of our time is not only morally incoherent but medical malpractice.

In the natural course of events, every profoundly autistic child will eventually be orphaned by the most qualified and dedicated caretakers he’s ever known — his parents. Absent meticulous advance planning and abundant resources, that child will be automatically transitioned by the state to placement in a residential living arrangement. For that child to be placed appropriately depends entirely upon having accurate clinical information about the intensity of his needs, taking into account the possibility of physical aggression, self-injury, elopement, property destruction, seizures, and other overlapping medical needs. I’m confident that if a person facing homelessness and a precariously uncertain future were asked whether he values a safe residential arrangement over semantics that obscure his diagnosis, he would choose the former.

For the record, any language that contorts or constricts the full scope of Zack’s identity is something I find deeply offensive. Zack has struggled with innumerable obstacles and heartbreak in navigating a world that does not come naturally to him, and his competence is strengthening to this day. Blurring his identity under the indistinct banner of “neurodiverse” erases Zack’s lived history — all that he has endured and overcome to get here.

Whitney Ellenby is a former disability rights attorney in the US Department of Justice and the author of the 2018 book “Autism Uncensored: Pulling Back the Curtain.” She is also the founder of Autism Ambassadors, which runs recreational events for over 800 families affected by autism in the Washington, D.C., area.