This is the very question that comes to my mind every now and then, from the day I have heard of the Disability Act in some countries like America, where they have covered Diabetes under the Disability Act under the law.
Obviously, there are many school of thoughts regarding this, some people have a negative impact as soon as they hear the word ‘disability’ and some have a sigh of relief, as it may not directly benefit them but may help their near and dear ones or to be precise, the parents of all the Type 1 kids.
As we all know, Type1 diabetes(T1D) is not something visible through eyes but it surely turns the life of a person upside down, once diagnosed.
As far as India is concerned, it has become the Diabetes capital of the world as the number of patients are increasing at a very faster rate every year (though the major proportion of patients suffering from diabetes is of type 2 but we can’t overlook the patients with type 1 diabetes) and something needs to be done for its prevention, care and cure.
“The Rights of Persons with Disabilities Act” in India was revised in 2016 and the types of disabilities included in the act were increased from 7 to 21. Unfortunately, the long wait of 21 years proved to be another moment of disappointment for all the petitioners and their fellow type 1 diabetics, as they were fighting for the their rights for these many years but their voice remained unheard.
This is really disheartening to see that so many children in India are getting diagnosed with type1 diabetes every year. The irony with T1D is that, this can affect any child irrespective of age, lifestyle or eating habits, rendering them dependent on insulin for their lifetime.
According to surveys, every year many children with type1 diabetes go through a number of miserable incidents due to lack of knowledge and awareness in the society towards type1 diabetes. These children need insulin for survival and frequently encounter episodes of hypoglycaemia, most common complication in insulin dependent diabetics. This in turn affects the performance of children in schools (curricular and extracurricular activities) as people around are very insensitive to these kids. They are not allowed to carry snacks, sweets (first line of treatment for hypoglycaemia) and glucometers during exams. Extra time is not given in case, a child has low blood glucose levels during exams resulting in loss of time, eventually affecting the grades of the child despite of putting all the efforts a non-diabetic kid does. People in schools and society needs to be taught that these kids are special and have extra ordinary needs.
Including type1 diabetes in the Disability Act will help these children manage their diabetes well, along with their studies. This doesn’t mean we are trying to prove these kids ‘disabled’, but to help them fight their daily struggles of diabetes in the schools, day-care, hostels etc.
Another concern related to T1D is the average cost of treatment per month, which lies between ₹4000-₹10,000 approximately (cost varies depending upon the type of insulin and its delivery system and the method of monitoring blood sugar levels), which is beyond the reach of many people in our country. Moreover, the price of Insulin keep escalating every year, which is the only life saving medicine for type1 diabetics, without which they will die. So, government need to work in this area so that Insulin can be made available to all the T1D patients at lower prices.
To sum up, as a diabetic myself, I feel diabetes doesn’t make a big difference once you are grown up and able to manage it yourself, but it does make a difference when you are too young to manage. I was diagnosed at an age of 6 years and hardly remember how I survived after that, because it was my mother who managed everything. She used to check my sugar levels, inject insulin, and a continuous monitoring was done by her, whether I’m low or high or there are ketone bodies when I’m sick. She used to accompany me in my school trips, talk to my school pricipal, teachers, bus conductors, driver, every person possible who was around me in my school days and explained them about hypoglycaemia, its symptoms and what should be done if they found me in that state. By God’s grace, somehow my diabetes was managed well during my early years of diagnosis, which is the most difficult phase of T1D, but this is not the case with every type1 kid. Sometimes, parents are not educated or schools are insensitive to these children and need a keen attention till the age they are able manage their condition independently.
Lastly, I wish our country gets an amendment in the Disability Act 2016 soon, which will include people with type1 diabetes like other countries. #hope