This is a guest post by Vedalakshmi Venkatesh. After her BE and MBA, she did software consulting in the US. While in the US, she was deeply impressed with the facilities and systems for early diagnosis and remediation of children with special needs. The rights-based approach that supported such children and their families inspired her to get trained in this area on her return to India. She now volunteers in education of children and young adults with intellectual disabilities. She also works with caregivers to support their psychological and emotional needs.
______________________________________________________________________________________
As I was thinking about the purple movement, which has come to symbolise awareness of people with disabilities, a multitude of thoughts came to my mind. Being a neurotypical person with limbs and other organs functioning the way nature intended them to, I cannot say that I “understand” the challenges faced daily by a person who is otherwise. I can however say that I know life is far tougher and much more excruciating for some than it is for me.
In the past decade that I have been in Bangalore, the awareness, acceptance, treatment and rehabilitation of persons with disability has progressed by leaps and bounds. No doubt about that. Wheelchair accessibility is now a legal requirement in all new constructions. The Rights of Persons With Disabilities (RPWD) Act gives a strong rights-based legal framework to provide for and prevent discrimination against persons with disability. There is (or should be) a formal disability commissioner in every state and a nodal officer at the district level, who coordinate care for persons with disability. The UDID card has simplified the process of accessing benefits under the Act. Society too has become more polite towards those who they see struggling with disabilities.
But what about those children and adults who face disabilities that are not apparent to a casual observer? I like to refer to these as invisible disabilities. Students with Specific Learning Difficulties, ADHD/ADD, high-functioning autism, and poor mental health have a look-and-feel that is similar to neurotypicals. They talk intelligently but can’t read. Argue cogently but can’t write without spelling errors. Can do complex math but are perpetually late. Love to be with people but can’t understand social nuances. Expert on dinosaurs but can’t sit in class for more than ten minutes. The list goes on and on.
These are the children who are variously labelled as stupid, lazy, careless, mischievous, trouble-makers, useless, dumb, undisciplined, poor student, failure, and so on. Guess what? Some of the brightest minds in the world did not conform to the accepted standards of the time. John Nash, the brilliant mathematician who revolutionized game theory, believed in aliens and was later diagnosed with schizophrenia. Albert Einstein, who needs no introduction, failed miserably in school. A simple google search on academic and/or social failures who went on to become famous throws up names like Richard Branson, Steve Jobs, Steven Spielberg, Tom Cruise, Elon Musk and even George Washington (the first president of the United States).
For each of these famous people who were able to thrive despite school failure, who knows how many could not get past those traumatic years? How many Spielbergs and Bransons have we lost due to our inability to see beyond the common ways of learning?
Of all the invisible disabilities that we are now aware, dyslexia is the one that is easiest to manage and adapt to. All it needs is skilled intervention for a limited time at the right age and some basic adaptation and accommodation in school. Yet, for some strange reason, neither are parents willing to get their child that timely help, nor are schools interested in intensive or focused remediation at that age.
The sad consequence of this is that by the time any action is taken, its too late for the child to thrive in school. Either the child struggles till it becomes too much and then opts for the National Institute of Open Schooling (NIOS), or the child just drops out of school and misses out on all that vital socialising. Every random primary class I have gone to has about 10% of its students who are at high risk for being diagnosed for Learning Difficulties. If these children could be remediated at the age of 5 or 6, they would be grade-appropriate learners in a couple of years. These children, who already have language processing difficulty (their brains are differently wired), don’t need to learn to read and write multiple languages, do they? Would it not suffice for them to speak the local language and be fully literate in just one language? Do they HAVE to attend classes for three languages, struggling through each one and ultimately learn none? Would it not be far better for them to learn just one really well?
This and related questions need to be asked by the parents to the school. For which, parents need to understand and accept their child’s special needs. If a normally intelligent child is not thriving in school, even as early as 4 or 5 years of age, alarm bells must ring. This is not the time to “hope” that the child will suddenly “get interested in studies” or become “mature”. At times, well-meaning family members may feel the parent (particularly the mother) is creating a problem where none exists. However, “better safe than sorry”, should be the strategy – informal assessments followed by proper remediation can be a game-changer for the child at this stage. It may take time to find the right school and remedial teacher for the child. This can, no doubt, be a frustrating process in our educational system which tends to have a one-size-fits-all philosophy, notwithstanding progressive steps like the new National Education Policy (NEP). One must persist however; it can yield rich dividends.
There are several such invisible disabilities, each of which comes with its own set of challenges. The silver lining is the growing awareness at least in large cities of India. The not-so-good part is the inadequate response of the boards of education to the special educational needs of these children. It is my hope that one day, recognition, diagnosis, acceptance and remediation of invisible disabilities will be as easy and commonplace as it is to get vaccinated in childhood.
This post is a part of “International Day of Disabled Persons” blog hop hosted by Sakshi Varma – Tripleamommy in collaboration with Bookosmia. #IDPD2022Bloghop. Access all posts of this bloghop at https://tripleamommy.com/2022/12/02/idpd2022-lets-make-this-world-a-more-inclusive-space/
veda Im so glad that you have brought up neuro diverse spectrum in the discussion here. In my work also I see so many parents who just refuse to believe that their child might need help and finds the routine classroom too challenging or boring . Unless the parents acknowledge the need, there’s absolutely no hope for any external intervention. Also teachers in pre primary /primary need basic training to distinguish these traits in kids. If not that then atleast a special educator at that level who can read the tell tale signs or do an objective assessment. Thanks Veda for initiating this topic.
Nicely stated Veda. 10% going undiagnosed in every primary class! That’s a huge number of kids … and just a little support would go a long way to help these kids.
So good that someone in the field has articulated so well about everyone, first parents, accepting and then quickly moving on to help them reach whatever their potential is.. thanks for saying it as it is and sharing the article here
[…] Day 14. 16th December. Blogger Vedalakshmi Venkatesh observes that while small steps are being taken towards disability inclusion in India, those with #invisibledisabilities are still a long way away from support infrastructure and societal awareness and empathy. Read her post here. https://tripleamommy.com/2022/12/16/invisible-disabilities-unseen-yet-real/ […]
Extremely informative article sensitising us to
what is seemingly normal ,but otherwise. Let’s hope we grow in the infra structure to accommodate, educate and allow them to grow in their areas of interest. Parents first, and special needs educators are the destiny shapers of these individuals.
The good thing is ,society’s perception is fast changing and more accepting .
Your article is an eye opener and sets us thinking. Liked the blog.
Very well articulated. Everything we do should be focused on the child and getting her ready to face the world with confidence. Your suggestions, like reducing the language burden in the curriculum, are novel and will help significantly reduce anxiety levels in the child as well as in the parents. More power to you.
So important that parents acknowledge the special abilities of their children. Still a long way for schools and communities to provide the full support required for these children to contribute their full potential. Thanks Veda, for this insightful blog to raise awareness of these issues.
Such an insightful post!! Thanks for writing it.
Hi Veda, you have discussed a very normal but unique problem, many of us are dealing with these issues and persons who are going through with these problems, only warrior of these issues and caretakers of such people can know and understand the intensity of pain and agony of this very unique but a normal kind of problem.
Hi Veda,
This is a very well written piece.
You have brought out what we need to as a society, as communities and as families to recognize and accomodate people with disabilities.
It is great that you sensitize other family members to pay heed to the mother who is often the first to recognize disability early on. And not brush aside her concerns. Better to intervene early.
At the school level your appeal against the one-curriculum-fits-all is timely.
Implementing these suggestions will make us a more inclusive society.
Very informative post, VedaLakshmi and thanks for sharing that Wheelchair accessibility is now a legal requirement in all new constructions, benefits of UDID card, so happy to know about these changes. But yes sometimes what seems normal but are under duvet of invisible disabilities needs more inclusion and awareness. Parents, friends, relatives, society in unison needs to accept and understand.
Completely agree with your thought that parents should learn to accept their child’s different needs and work towards making things better rather than pushing the child to fulfil their preset expectations. The education system needs a major revamp where a child’s interest should be the priority rather than rote learning. Thank you for sharing your valuable thought.
That was a post that was actually ought to be. Learning disabilities are always seen as laziness and never perceived the right way. Awarness and understanding will surely do the needful I think.
I think now people becoming aware about the different states of mind for humans and also about the different levels of platforms to undertake instead of taking the stereotypical route. Hope this will be for a better future.
Thanks for bringing up the important topic of invisible disabilities. In some ways it is even tougher for people with invisible disabilities to get acceptance. It is much easier for people to brush these off as laziness or attitude problems.
Thanks for enlightening the readers. Awareness and acceptance can ease the journeys a lot. Actually the education system needs much changes.
Sreeparna
Invisible disabilities are often unseen and unspoken of, yet they are very real. They can include conditions such as chronic pain, fatigue, anxiety, depression, and more. Many people with invisible disabilities struggle on a daily basis to do things that others take for granted. Just because someone doesn’t “look” disabled, doesn’t mean they aren’t.It’s important to be understanding and patient with those who have invisible disabilities. Sometimes all they need is a little accommodations or understanding to make their lives a bit easier. We should all strive to be more inclusive and understanding of those with any type of disability, visible or not.
I hope many people read this blog and open up their understanding to the world of neurodiversity. Many of us grew up without any understanding or awareness of this but thankfully times are changing. Well meaning organizations and parent-activists have worked relentlessly to have neurodiverse conditions like Down Syndrome, Autism etc included as a disability at the policy level but tremendous amount of work still needs to be done.
Indeed. Expanding the list from 5 to 21 was a huge step forward. But the law has not yet caught up to curricular needs at all.
Massive deficit in curriculum for the specially abled. NIOS and Pratham were also not designed for them. Independence skills and practical academics are all that we need.
Thanks for sharing your perspective on this which is otherwise an “ignored” territory. That reminded me “Taare Zameen Par” movie…
As you suggested rightly, “Recognition & Diagnosis” are the crucial first steps in that direction…
Our deepest bane is our education ‘system’, where children are treated like factory products with standardised learning and standardised assessments. Unless we start seeing every individual as different, and unique, these invisible (dis)abilities will forever remain hidden. Thank you for highlighting a very important issue.
In the effort to bring everyone on the lowest common denominator we fail to see the unique efforts and challenges of each person. Enjoyed reading your post Veda
So glad to hear you’ve got those kind of improvements in India. Moving and living here in Singapore, it’s impossible to not see how disabled (especially those wheel-chair bound) have reclaimed their independence with the help of great facilities and well-thought infrastructures they have here. Travelling is a breeze with lifts, buses, and trains available and always giving consideration for the space they needed. Tactile markers and braille dots are everywhere as well. Indeed with good hearted people still willing to help and make this world a better place, our Mother Earth can be friendly to everyone, abled or disabled.
Your post reminds me of the year I spent volunteering at a school for students from economically disadvantaged backgrounds. The students with learning “difficulties” so to speak had a very hard time keeping up with their peers, more so because their parents simply couldn’t afford testing and diagnostic services. I don’t know what initiatives are practical to implement in India but perhaps the first step is free and compulsory mass testing? (Just throwing an idea out there but financing and implementation are of course much deeper questions )
An Informative post which helps in creating awareness about PwD that are invisible. Just like other stereotypes this is another one of them where we feel that a person is disabled only when the disability is visible. We need the right conditioning regarding disabilities right from an early age. Keep the good work going.
#Jokerophilia #ContemplationOfaJoker
”How many Spielbergs and Bransons have we lost due to our inability to see beyond the common ways of learning?” This line really hit me hard. The education system’s flaws need to be addressed now more than ever as it is affecting the future of many kids. I think it is a necessary joint effort of teachers and parents. The first step towards solving a problem is acknowledging it exists. Parents need to admit their child might be different and that there is nothing wrong with it. And teachers must nurture these kids instead of scolding them or outcasting them from the class.
You have in such a great way covered what children with invisible disabilities go through in their early years. Now that I work with neuro divergent children and I myself am person with an invisible disability, I feel that the needs of people with invisible disabilities are not knon and hence not acknowledged. The describing the rights in the country actually tells us that most of these are laws but implementation is a problem.