People with special needs require empathy and not sympathy
- Shri M. Venkaiah Naidu, Vice President of India, International Day of Persons with Disabilities Speech, 03-Dec-2018
Why disability awareness and disability advocacy are critical?
Contradicting views notwithstanding, conflicting economic interests prevailing in the families of the person with disability, and divergent mindsets of the society about disability co-existing; the 21st century needs to move forward with humanity, human rights, and human values of inclusivity. Everything today, must be inclusive.
Fact of the matter is, while RPWD Act recognizes 21 categories of disabilities and experts add a couple of more as invisible disabilities, most of us live with various incognizable disabilities of the mind and the soul. While for ages we have tagged people with disability as crippled, handicapped, differently-abled and so on, deep through our incognizable thought disability we see ourselves as "normal" and "them" as - well, we always need a tag.
Why this? At the time when we have raised our voices on racism, on body-shaming, on gender equality, or on sexual orientation; and asking for equality against every discriminations; attitude to disability needs immediate reassessment.
The way to do this is to spread the awareness about the truth of various disabilities and advocate for the rights of people with disabilities. Only then we can have inclusive development as human race.
In this section we chronicle major global and India efforts.
A person with disability does need compassion and charity; he needs empathy and empowerment
Before talking about disability awareness, it is necessary to discuss self-awareness: not only is an individual more than their disability, disability awareness is an extension of self-awareness. It is crucial for an individual with a disability to have self-awareness so they can see themselves as an individual just as unique as someone without a disability, and not to define themselves by their disability. For others to recognize an individual with a disability as more than their disability, the individual needs to be able to identify themselves as more than just someone with a disability.
What is Self-Awareness?
Self-awareness is an understanding of one’s self, and an individual’s ability to be self-aware typically increases with age. Self-awareness looks very different for a 5-year-old, a ten-year-old, a teenager and an adult. It is a skill that can be taught and ultimately for an individual to be fully self-aware, they need to understand their strengths, weaknesses, likes, dislikes, fears, wants, desires, and beliefs.
Steps to gaining Self-Awareness
The individual needs to know what self-awareness is and understand why it is essential for them to be self-aware. For example, I need to know about myself, so I can tell other people who I am and what makes me important!
Help the individual identify their talents, strengths and weaknesses in a variety of different contexts. For example, What are your strengths at home, school and in the community? What things are hard for you to do on your own?
The individual should reflect on what their feelings, opinions, biases and values are. They should then think about how these relate to other individuals and their beliefs. For example, What is important to me? Is it necessary for everybody else?
They need to understand what they feel ‘success’ is and decide what success is for them. For example, What would make it so you are happy with your life?
Steps to gaining Disability Awareness
Disability awareness is very important for an individual with a disability and their family. It is essential that you understand what the formal term and diagnosis mean so when you are asked by others what it means to have the disability you can describe it. You can then correct people who are misinformed about the disability so you can help them understand the condition better.
After you know how to explain the disability, you will need to develop a full understanding of how it affects you or loved one’s daily life. Each disability has several symptoms, and for many disabilities, all symptoms do not have to be present for a diagnosis. When someone learns that someone has a disability, they will often think of previous people they have encountered with that disability and apply that person’s symptoms to this new case. For example, if someone tells you they have a learning disability, can you tell by looking at them what areas they have problems with?
It is critical for you to develop an awareness of coping strategies that work and do not work to help compensate for your disability. Do not assume that just because a strategy works for one person that it will work for you. Even siblings with the same disability can have strategies that work for one of them but make it harder for the other. Be aware that there will likely be several people with good intentions who may try to convince you of attempting a new strategy but if you have a strategy that works for you and you like it do not feel like you have to try their strategy. At the same time do not be afraid to try new strategies if you still haven’t found one that works well for you.
Self-acceptance and disability acceptance is a crucial step in the self-awareness/disability awareness process for the individual and their family members. This can be a challenging step for some individuals, and it is important that they take the time they need to process and come to terms with the diagnosis. This is something you cannot force, and you cannot rush through. Of course, there will be days that are harder to accept the diagnosis than others, but once you are able to discuss the diagnosis without getting upset about talking about it, you are on your way to disability acceptance. Please note, there may be some people in an individual’s life that never accept or come to terms with the diagnosis. There is no way that you can force acceptance of a diagnosis.
It is helpful for an individual to be able to compartmentalize their disability, so they are able to see themselves as more than just the disability. Having a disability does not make them any less of a person with individual likes and dislikes. There may be some things that are more difficult or impossible for them to do because of their disability, but it does not mean they are any less of a person. It can be helpful for the individual to attribute the issue to their disability, but at the same time, it is essential that they do not use their disability as an excuse for not trying things. There are many people in this world that can do surprising things despite their disability. Think of all of the great scientific ideas that Stephen Hawking came up within even though he was a paralyzed and not able to use a pencil.
Individuals with disabilities need to remember that you know yourself the best. You may not know everything there is to know about the disability you have, but you know about how the disability affects your life. Understanding more about your disability will likely help you understand more about yourself and provide you with insight into what you might be able to do differently to make your life easier.
Parents of individuals with disabilities, you are the expert on your child and how their disability affects their daily life. Experts can tell you about the disability and various strategies to try. Take the time to listen and learn as much as you can from them. You know your child the best and are the one who has to decide if those strategies are right for your family.
Concept of Disability Within the Culture
Many families are reluctant to report disability, particularly in view of the prevailing negative attitudes toward people with disability in most communities.
The major shifts in thinking about people with disabilities that have occurred in the West for the past three or four decades have only started taking place in India in the recent past.
Persons with disabilities constitute a highly marginalized group Exposure to disabled people in India is a common occurrence; but the contact is of a very different nature than that in Western society.
Walking the street in India exposes one to people with leprosy, amputations or visual impairments who often use their impairments to solicit money. This type of contact may cause the person with a disability to be viewed as a person to be pitied, shunned or supported by charity. Negative attitudes result from this type of contact in which people with disabilities are viewed as inferior.
Furthermore, most adult Indians have not attended school with people with disabilities since integration is only beginning to be implemented in Indian schools
In some villages, people with disabilities are shunned, abused, or abandoned at birth, since parents are ashamed of their disabled child, cannot envision a viable future for the child, and fear social isolation themselves. This may be due to the religious beliefs that may attribute the cause of disabilities as punishment for past deeds. Thus, disabilities are hidden from the public whenever possible.
Also, in cities environmental barriers are so severe (few sidewalks, pedestrian traffic signals, curb cuts, or ramps) that most people with disabilities are simply not able to go out in public.
Views on Acquired vs Lifelong Disabilities
Although families go through the natural process of shock and grief when a child is born with a disability, in Indian culture, it is accepted as one's fate or destiny. The belief in karma, or payment for past deeds, underlies the accepting spirit. Because rehabilitation services are not easily available to the majority of the population in India, little help is sought for children with lifelong disabilities. Economic hardship, poor transport facilities and a lack of education make it harder for the parents to access services for their child.
When a person acquires a disability, people are more sympathetic since they think of the person's level of function prior to the illness or injury.
If there is hope that the person will be fully functional again, efforts are made to provide services. For instance, in one particularly wealthy family, the male member, also the breadwinner of the family, was involved in a train accident and had to have both his lower limbs amputated. The family saw to it that he got proper medical treatment, had his prosthetic limbs manufactured and fitted, and got his car adapted for him so that he would be fully functional again.
In the same family, a child was born with severe physical deformities. Although the family has taken care of that person all his life and attended to all his basic needs, they never consulted a rehabilitation professional to seek to make him more independent.
In view of the importance of awareness about disability, we present various efforts at individual, organizational, local, regional, national and international levels to spread awareness about persons with disability
How to interact with a Person with Disability?
Models of Disability
It is important to understand the model of disability - especially the difference between the person-centric model (which the persons with disability has to handle) and the world-centric model (which the rest of the world has to support).
Models for Person with Disability in India
Be Sensitive while Referring to a Person with Disability
The difference between the right word and the almost-right word is the difference between lightning and a lightning bug - Mark Twain
It is people first, then the disability. So we must say, "A student with a disability", rather than "a disabled student"
Person with disability
Person with visual disability
Person with blindness
Person with low vision
Person with visual impairment
Hard of hearing person
Person with intellectual disability
Person with psychosocial disability / mental illness
Person with autism
Person with epilepsy
Person with hemophilia
Person affected by Leprosy
Mentally retarded / Retard
Confined to a Wheelchair
Over the centuries, persons with disabilities have been referred to by various terminologies in India and across the world, including (but not limited to):
Person with Disability or PwD
Disabled Person. In Hindi, viklang / विकलांग is used in India and had been the official term till 2016.
Crippled / Cripple
Physically / Mentally Handicapped / Challenged
Divyangjan (दिव्यांगजन). In Hindi, it means "person having divine body". Google translates it to "handicapped people", EngHindi.com puts the meanings as: "specially-abled", "disabled", "handicapped". This is the official term for person with disability in India since 2016.
Recently National Education Policy (NEP) 2020 has used several terminologies including:
Person with disability
Student with disability
Child With Special Needs (CWSN)
Divyangjan or Divyang
The terminology of reference to persons with disabilities has evolved in India from Physically Handicapped (viklang) to Physically Challenged to Differently / Specially Abled to Special Needs to Divyangjan (divine bodied) to improve the sensitivity and inclusiveness. Yet the debate over what is really respectful, what is sensitive, what is inclusive, still continues (refer to the references below for an extensive perspective on this issue). As of today, across the world and in India, most people with disability prefer to be referred as "Person with Disability".
* Prof. Partha Pratim Das of IIT Kharagpur recounts - "When I joined IIT in 1979, there used to be quota for Physically Handicapped or PH, which is now called Person with Disability or PwD".
As the world moves towards better inclusiveness for the persons with disability, some disability activists are advocating for a modified access symbol. Sara Hendren and Brian Glenney co-founded the Accessible Icon Project, designing the new icon to display an active, engaged image with focus on the person with disability.