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.
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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/
