Adarsh Speaks

Types of People

Adarsh

15th Feb 2023

From the Perspective of a Guy on Wheels

People are around us all the time, especially in India. I don’t know any place in India where you can go without seeing a person. Wherever you go, into a forest, up a mountain, or across the ocean, you are bound to encounter a person within a few hours. The world’s population is increasing and soon India’s is going to become more populous than China. With such a large population, we have such a diverse group of people with different personalities, different ideologies, different cultures, and different ways of expressing themselves.

Now I would like to focus on a specific criteria of how the population treats someone with a disability, specifically a people who is physically disabled and uses a wheelchair, so as to avoid bias of other disabilities. Based on my experiences and observations I have categorized five types of people on how they treat a wheelchair user. Please do keep in mind that there is no correct or wrong type of people and that many people are simply unaware, and their behaviour often stems from ignorance. Also, I have found that many people change their perception of who I am over time, when they get to know me better. For instance, towards the end of my master’s degree college program many people said, “You are not who I thought you were going to be” (in a positive way). I would have ignored this saying had one or two people shared it, but on reflection, I found a lot of people said that closer to the end of my college years. This phrase just kept repeating itself at the back of my head, and I started questioning it. I analyzed it in my mind and started asking people what they meant, and started observing new people I met, and having conversations with people close to me about this.

Over years of reflections, experiences, and observations I came with 5 categories of how “normal” people treat people in a wheelchair and I have explained my thought process:

People who are sympathetic or take pity on you: A lot of people take on this perceptive. Sometimes when I visit a place like a hospital and someone comes to assist me (even if I don’t require it) they say things like “Oh you poor thing, why has God done this to you. You seem like such a nice boy”.

When I meet new people whether at a function, at an appointment, or even friends of friends I get a sense that people are curious on why I use a wheelchair. They want to know what happened to me. Most people keep it within themselves, but some simply ask upfront. Some of them respectfully say “If you don’t mind me asking” or some just randomly ask out of the blue because curiosity has gotten the better of them. I don’t mind either way because I understand the urge to ask. I always wondered why people get curious till one day I found myself doing the same thing several times. Even when I meet other people with disabilities, I would wonder how they got it. Was it through an accident or was it by birth? Hence, I started believing that this feeling of curiosity was common and there was nothing unusual about it.

Once I answered their questions about my disability. Some would start feeling sympathetic and would say things like “Oh it must be very difficult for you”, “life is not fair”, and even things like “be positive, please don’t lose hope” or “be brave, everything will turn out fine”. Now when people say these things, my initial thoughts that surface above all else are, “these people don’t know anything about me and who are they to tell me how to think or act?” Of course I don’t say this openly. Instead in my mind I keep saying that it is not their fault that they say that, and their intensions mean well. They are just not aware.

Now you must be wondering what my answers to these people are. For the most part I just nod my head and say “yes, sure”. Depending on the environment, the situation, and my own gut feeling of the person, sometimes I get into conversation about this. Especially when people say, “oh it must be difficult for you”, I say “it is not difficult, it is normal for me. Everyone has some sort of difficulty in their life, and this is mine, the only difference is mine is visible.” For some responses I politely tell them that they don’t know me and once you get to me know me, they will understand. I kind of throw the ball into their court so if they are genuinely interested in me, they will make an effort to get to know me.

I do agree that I sometimes I shouldn’t just nod my head yes for a quick end to the conversation, and I should spread awareness. But the situation sometimes gets the better of me. I do aim to reduce these quick ‘yes’ responses.
People who glorify you and put you on an alter: Here is a group of people who have a perspective of the other extreme compared with sympathy. Most incidents of this have been random people coming up and telling me things. For example, at restaurants or breweries where I am having a drink with my friends, sometimes random people have come and tell me “It’s great that you are coming out and doing things like us regular people, it’s amazing”, or “its inspiring to see you in this environment”. Sometimes when my friends and I go to a club where they dance, I like to sit next to the DJ and hear the music upfront. I usually sit to the side where drunken dancers won’t stumble on me and have my friends dance around me. Sometimes random people come up and say things like “wow its great you came up here, its inspiring” or even sometimes someone who has been a little intoxicated comes and continuously praises me and says things like “if you can get through your difficulties than so can I”, sooner or later my friends have to come rescue me and send him away.

What do I think of all of this? Everyone likes being praised, and I am no exception. I of course enjoy the praises, but since I am from a psychology background and having learnt to question everything, I questioned why these people say these things. Maybe some of these are genuine remarks, or maybe some are just so the people who are complimenting me may feel better themselves. Their own challenges or difficulties in life come to surface when they see a guy on a wheelchair having fun. I have never asked anyone about this, but this has been my own intuition of thoughts.

I usually have no remarks to say when someone says the above remarks except maybe “thank you”. A couple of instances I have replied saying “I am not different, I am just like anyone else”.

Another observation is that it has always been a guy who walks up and says the above-mentioned remarks. Never has it been a girl. I would think my remarks would be the same, but you would never know (especially if it were a cute girl ;p)
People who think you are similar to them and try to relate to you: There have been quite a few instances where people have had injuries of their own in the past and they may come with the intention of thinking they understand me because of their past injuries and want to give some sort of “life advice”. It can also be the other way where people seek me out so they can unburden themselves by thinking I can understand them or relate to them. There have also been people who have a family member who is disabled and try to get a perspective from my side.

Here I don’t see anything wrong people seeking me out either to make themselves feel better. I guess being a psychologist changes this. In such situations I usually begin my answers by saying “each person has their own difficulties”, give some positive thoughts, and try to understand them.

On the other hand, when people think they understand me and think they can give advice I don’t like it, but I don’t show it. Many times, people have come up and said, “oh I have broken my leg once and had to use a wheelchair, I know how it feels”, or “I had to use a wheelchair for 6 months, I don’t know how you do it?”. At this point in my mind I am thinking, “you have just met me and there is no way you understand how I feel or what I am going through”. I guess I try to escape the situation then.
People who think you are insignificant and ignore you: This scenario is quite common and I will give examples of a range of incidents where I would feel insignificant or ignored.

I shall start with a scenario that ended on a positive note. Once I was entering a park in Mysore with a few friends where you have to pay a small fee. The gate was manned by a forest ranger. He said that he cannot allow me inside due to my electric wheelchair. Instead of getting angry or mad, I held my composure and told my friends that I will handle it. I looked straight into his eyes and told him in Kannada, “this is a public park, which is wheelchair accessible, and in fact there is a rental mobility scooter behind you, so why are you saying this”. He replied with a blinded statement “if I let you in, then others like you will also come in”. This statement was appalling, but me being me, I didn’t lose my temper, rather I understand the situation and figured it is really not this guy’s fault. It is rather his lack of awareness and not being taught how to talk. He actually seemed like a nice guy without an attitude issue. I decided at that moment to actually try something new and that was to just have a discussion with this guy. By then other park officials had come and let me in. Once inside the park I called the guy over and continued our discussion. Based on his statement “that if I enter than others like me will enter”, I asked him his job profile and he said to help the environment and the public. I then said “If you are helping the public, then am I not part of the public? Being a respected forest ranger, shouldn’t you actually me more thrilled that more people like me are coming out and using the public park that you are a part of instead of being at home”. By the end of our small discussion the guy was actually in tears and admitted that he never thought in that perspective. He apologized profusely even on the way back from the park.

A negative example occurred during a rainy day when I attended the flower show in India with my cook, Nagamma (who is like family). We were on a stroll round the gardens looking at various flowers when it suddenly started raining. Nagamma quickly found a shelter and got me inside before it became overcrowded. It was a very tight space and I had to maneuver my wheelchair lest I run over someone’s foot in this crowd. Somehow, I managed, but an older women admonished me. She looked down at me and started shouting at me in Kannada saying, “Who are you to come out here, your kind of people should stay at home, that is your karma”. Thankfully before she could say more Nagamma shouted back at her and told her to mind her own business. In my mind I did not blame the women who was shouting at me, but rather the system of how the public has not been educated or implementing awareness. Such old beliefs, superstitions, and stereotypes still exist in a big city.

During my late teens and early adult days I was very quiet. I would talk only when I was spoken to. Sometimes at spa places, haircut places, or even dance clubs, people would ask the people I came with if I was “okay in the head”. For some reason people would put ‘me not talking’ and me sitting in a wheelchair together and think ‘he is not in the right state of mind’. Of course, it is not right for people to jump to conclusions immediately.

Sometimes my insignificance works in a positive way sometimes. For example, during college especially, the girls would sometimes want to have the typical girl talk and wouldn’t mind me being in the classroom. At times the college teachers discussed important things in my presence and didn’t mind me being there. I have noticed this phenomenon at several places where people want to discuss something important and don’t mind if I am there in the same room. Luckily, they don’t have to worry about me because upholding confidentiality and integrity is a large part of who I am.
People who treat you like everybody else: This category of group is hard to come across. They are very rare. Most people around my close circle fall in this category usually after they have gotten to know me. For me, when I mean I like to be treated like everybody else it means that people are free to speak their mind without the slightest hesitations. They don’t have to speak or act differently because I am in a wheelchair.

The best example of this is a fellow psychology classmate of mine who challenged how people talk to me. In fact, we became good friends till today because of her curious questions about me. She was frank but not rude, she wanted very specific answers and tried to analyze how I processed things in my mind She really made me think a lot. For example, I mentioned earlier people are curious why I am disabled, but don’t know how to approach me. She was direct and if I remember correctly, she said, “Please don’t take it the wrong way, but I would like to know what happened? What is your story? There is no ulterior reason or anything. I just want to know”. I liked this direct approach and we spoke a lot over the next few days and soon became friends. She had lots of questions like, “what is the right terminology that you prefer?”, or “what things can someone say that would make you take offense?”, or “if I said it like this, is it correct?”, or “Do we need to technically hold the lift door open for you every time you come up (actually you don’t)?”. Questions like this would actually make me think. Us becoming friends is the perfect example of how she learnt to treat me like everybody else, by asking questions and most importantly, which was because she wanted to.

Now there have also been a few instances in meeting friends of friends or guests my family bring over for dinners who seem to treat me like anyone else. Usually older guests are more careful; they are better at hiding their initial thoughts, or because the social setting mandates it, or they are actual one of those rare people.

One aspect I would like to point out again and again is that once people get to know me, this invisible glass wall of awkwardness will shatter for the better.

I would like to assure that the above 5 categories are solely based on my opinion and thoughts. I am not pointing fingers at people and saying what is right and what is wrong, I am simply just sharing my experiences and thought processes to the world with the intention of spreading awareness and initiating potential topics for deep dive discussions.

I would like to conclude on the note that curiosity is a natural state of mind. If and when one is curious to know about something or someone, one should take note of the emotion and ask questions. Of course, there is always a way to ask questions without sounding rude, harsh, or being mistaken. One never knows what could come out of acknowledging and acting on one’s curiosity.

Change- The Inevitable

Adarsh

2 comments

31st Jan 2023

Change- The Inevitable

For Better or Worse?

There are numerous definitions of the word ‘change’ in the dictionary, but if we break it down intuitively, ‘change’ essentially means something ‘becoming different’. In this write up, I am going to relate change specifically to life. Many changes happen in life which are observable. Like how we can observe how an infant grows into an adult. It can also be unobservable like life experiences creating a change in one’s personality and though processes.

Change can be either negative or positive, or even a blend of both. On the positive side, it can imply anything pleasant like securing your first job, getting married, starting a family, winning a lottery. On the negative side, it can leave a bitter taste like being fired from a job, an abrupt divorce, or losing a loved one. one. Change can also be an in-between happening like moving to a new city, moving in with a friend, or staying with parents.

There is also a third type of change which, though noticeable, is processed internally. This is the change brought about by unusual or life-threatening circumstances and situations. Given the context of this change, one has to acknowledge the fact that Change is inevitable – it will happen for sure! It is just how we process this change or from what perspective one look at this ‘change’ that defines who we are as individuals. If one looks at ‘change’ negatively, one may get stuck into a vicious loop of negativity and the more negatively one looks at ‘change’ the more one is sucked into this loop. Whereas if one were to look at ‘change’ positively, which is easier said than done, then the definition of ‘change’ can be morphed into whatever we want it to be. Change can invariably be measured as glass half empty or glass half-full.

Let me illustrate the analogy through a few examples from my own life. These examples pertain to my condition of Duchenne Muscular Dystrophy (DMD) and the consequent physical changes. Thanks to the transparent and open communication with my dad since I was a kid, I learnt what to expect as I grew older. I came to terms with this condition at age 5. I knew I would get weaker as I got older. I knew I would stop walking one day. As I got older and more mature, I was also prepared for newer obstacles and other difficulties like restricted mobility, becoming dependent on a caregiver, using a BiPap machine at night, increased GI issues with dietary restrictions, not being able to turn in bed, etc.

Looking back, I feel I am now I am in a place where I can look back on how I dealt with these changes and at the same time I am in a place where I can envision the future on what all new changes, I may have to deal with going forward. How was I able to handle all these ‘CHANGES’? I wonder. The trick is quite simple to say but very hard to put into practice. It is about cultivating a specific mind set. But as you practice this concept, it gets easier and easier. What is this concept you may ask? It’s simple. It is about looking at the glass ‘half-full’.

Let’s take a powerful example of this. The transition of me from walking to using a mobility device. When I was around 12-14 years I gradually slowed down in my walking. Over the years I had frequent falls, had difficulty getting up, increased leg pain, and eventually came to a halt of not walking at all.

I had driven mobility scooters before, but never had my own. We (the family) wanted to avoid having my own mobility scooter lest I become too dependent on it. Now the time had come for me to start using these devices to move around on my own rather than sit in one place and depend on someone to assist me. Now here I was where I couldn’t walk anymore, but hey! I now get to ride around in this awesome scooter, which looks like a mopad. Which 12–14-year-old boy doesn’t like to ride a mopad or a motorbike? I enjoyed driving it especially in malls or smooth open places where I could go fast. The fastest I could go was in comparison to an adult walking fast (that’s all), nevertheless it was fun. I even learnt to do a small jump while driving the scooter, which I loved to show off. Looking back on it, now I know that it was my dad’s effort behind all of this that made the transition smooth and fun for me.

In September 2017, there was a sudden set-back. I had an accident resulting in 3 fractures in my shoulder and hips. After the surgery I had a crisis followed by severe breathing issues. I was put on an invasive ventilator. I took almost a year to recovery physically and another 6-8 months to come to terms with my situation. Anyways, long story short is that “change” was challenged here incredibly. Obstacles that I knew I would slowly have to transition to and deal with one by one were suddenly imposed upon me in all directions and multiple changes. All at once.

After my physical recovery, I had to deal with these ‘changes’ head on. The major changes are mentioned below:

I had to become completely dependent on a care giver who had to be around me 24/7
I had to adapt to an electric wheelchair (different from mobility scooter)
I had to use a urine can whenever I had to relieve myself
I couldn’t turn sideways in my sleep anymore
I had to use a BiPap machine at night

Now at that time, after I recovered physically, I had become very quiet. I wouldn’t talk much, I wouldn’t message my friends or answer their calls, and everyone kept saying I wasn’t my usual self. Me being from a psychology background and having a dad who encouraged self-reflection since I was a kid, I questioned why I was acting the way I did. For months I couldn’t come up with a reason. My family and I went on a long trip to Italy so we could get away from the traumatic year we had faced and hoped a change of environment would help me regain my poise.

I decided to give it my best shot and also helped plan the itinerary including booking a wheelchair accessible van that would fit my large family. Somewhere during the trip, I returned to my humorous talkative self. After ‘coming back’ literally and figuratively, I still hadn’t found an answer to my question. Then during a talk with my college classmate in my Bangalore apartment balcony, it suddenly dawned on me. This whole time I was fighting with my relationship with “Change”. I realized that so many ‘changes’ had hit me all at once that I needed time to address each ‘change’ one by one. Over the months I was able to come to terms with my ‘changes’. All this while my mind was addressing all of this subconsciously, and I just needed to give it time, which I did. The mind is very complex in that way, it was making me be silent, but it was working in the background continuously processing. Take my word for it. At times we just need to listen to our mind (and body) and give it time.

By now most of you may be wondering how did I tackle these unsurmountable “changes”? Had I taken them negatively, I would probably be somewhere sulking away. Somewhere during my journey to recovery, I have positively changed my mind set about these changes. The first and foremost challenge was to have a caregiver 24/7. Initially it is difficult to have someone all ways around you. You feel your privacy is under threat, and you feel ‘watched’ all the time. My family addressed this directly by letting the caregiver know to be there at calling distance, but at the same time leave space for my comfort zone… essentially be there, but not be there! Also, I cultivated a mind set to challenge this ‘change’ fueled by a positive outlook rather than a negative view. Hey! I have my own personal caretaker. In a sense I have my own personal butler like Batman’s famous butler Alfred. I can trust him whenever I need help, he can get me my favorite snacks from the kitchen, anything I need is a snap away. I mean how many people in this world wish they had one. I have it! I better make the most out this situation!

About the transition from a mobility scooter to an electric wheelchair. I could have had a negative approach complaining that a toy-like device has now been replaced by a device that shouts out “wheelchair”. I could have complained about the way it moves, the buttons, the seat, and the like. But I chose the other course of action open to me. Of course, I had a hard time transitioning, but there were many good things about the transition. Now if I am sitting at a table and someone greets me from behind, I can immediately turn around in my radius and talk to them face to face. Earlier, many people, especially kids, would mistake my electric scooter for a toy and presume I was a pampered kiddo riding a device, they would come running to press the buttons and invade my privacy. Now, when people see the wheelchair, they are careful around me, and they are less judgmental in their behavior. My wheelchair is safer, faster, and can fit directly under a table. The support system is more beneficial for my legs and back. All these are tangible rewards that I relish in full measure.

Before my accident, I was able to go relieve myself by driving my scooter up to the rim of the toilet. This gave me a sense of independence, but every time we went out, we had to make sure the restroom had no steps. This was a huge nuisance, especially in India. After the fall, I had to be dependent on someone to hold the urine-can for me. At first, I was like how is this going to work in public, the chances of having a spill are more, and that even for a small natural process I had to call someone. This was a situation where I was forced to deal with change, but once I adjusted to it, I started looking at the situation in a positive light. Now I don’t have to worry about finding an accessible restroom, I can pee wherever I want to. I can relieve myself even in a crowded place by going a corner and having a friend block my wheelchair. In a way it is actually easier than before. I wish I had gotten used to using a urine can earlier in my life. Had I clung to the negative view, I may have stopped going out completely resisting the new change. What a tragedy that would have been.

Finally, coming to one of my major life changing situations, using a BiPap machine at night when I slept. This is more of a preventive measure to give my lung muscles a break at night especially since we tend to breathe harder when we sleep. The BiPap just pushes pressured air periodically in sync with our breathing and helps push out carbon dioxide. There are 3 different types of masks available for use depending on each user’s preference. I got adjusted to the mask that just fits over your nostrils, but a large tube hangs below your nose which connects to the BiPap machine. It took about a week or two to adjust to it and now it has become a normalized process. Of course, to make the process fun, the family (including myself) made fun of me teasing me that I looked like “Lord Ganesha” or sounded like “Darth Vadar”. Once I become completely comfortable with it, I noticed a slept better. I later learnt that people with sleeping disorders also use BiPaps to improve the quality of their sleep. So, I got the reward of my positive outlook. Even though every night I have one more process, to put on this device and the fact that I have to take it wherever I go, the plus side is now I enjoy sound sleep and feel relaxed and rejuvenated every morning.

To end on a short phrase:

Change is inevitable, whether we like it or not,

but how we define ‘change’ defines who we are!

My Insights into What We Have Learned from the Corona Pandemic

Adarsh

no comments

9th Jul 2020

When the first corona case came to Bangalore around the 2^nd week of March, the safest reaction my family decided to take was to send me off to Mysore. Within a week of me being in Mysore, a nation-wide lockdown was implemented on March 25th resulting in the rest of my family coming to Mysore. I remember watching the live coverage of our PM Narendra Modi addressing the nation and imposing a complete lockdown for 21 days.

People were starting to get scared from what the entire world had witnessed in Italy and Spain and began to understand the importance of lockdown as a precaution. We were hopeful that India as well as other nations would not do the same mistake and would contain the pandemic.

During such times, I always like to ponder different perspectives from different people who may be in different scenarios and then start to define my own perspective in regard to myself. I could sympathise with people who were stuck far from home who had to live by themselves in an empty rented apartment or people who were stuck with others they might not like. At the same time I looked on the positive perspectives that families would now be able to spend more time together and those that really require a break finally would have gotten what they desperately needed.

Looking at these various angles made my situation seem much better and in a way very lucky. For me personally I was already used to being most of the time at home, but alone most of the day. This pandemic situation created the scenario where I continued being at home, but now not alone and I am with my entire family. So in a way it was a win-win situation for me, included added bonuses like my own room, different and even sometimes exotic home cooked meals, a tropical lush garden with nice views, and the many dogs we had. It was a paradise lockdown for me.

Of course, the longer the lockdown extended, the more and more eager I am to go out for socialising and for the lockdown to end with everything coming back to a different normal.

Many dining-table-discussions took place almost everyday resulting in yummy food on the table and “food for thought” topics, which are mentioned below:

The number of people dying from corona virus is quite less affecting mostly the elder and immunity sensitive people. At the same time the number of deaths due to road accidents, stress related deaths, and murder is much less. Hence it is fair to say that due to the pandemic lockdown there have been fewer deaths overall compared to a time when the corona pandemic wasn’t there. In other words, the pandemic is killing fewer people compared to deaths by other causes.
More and more people are becoming educated about the importance of hygiene, staying away when someone has a cold, and understanding how germs spread. The proof seems to be that families that have followed the lockdown protocol have been seen to be the healthiest they have ever been. Our own family is an example. Many ailments including minor issues have decreased or become none for each member of the family. Many issues of my own stopped, the major one being cough. For more than a month I haven’t used the cough assist machine.

Illiterate or uneducated people are using masks, hand sanitisers, and staying away from others who have a cold. They actually have been able to teach others about the spread of germs/viruses. In the same way, educated people who overlooked hygiene are now giving importance to take strict preventive measures against colds and the spreading of a cold.
The world is adapting to lockdown scenarios from social apps where simple games can be played live online while speaking to your group of friends like housparty, bunch, ludo, etc., to starting creative things at home, online classes, to more home delivery services, to work-at-home scenarios, to even starting virtual tours in famous world museums. People are learning, evolving, and adapting.
The pandemic has been a boon for the environment. There is significant less air and noise pollution from factories and vehicles, less industrial pollution to water bodies, and less carbon dioxide being produced. The proof is the increase of birds in our garden and cities, rivers and lakes becoming clearer, rebirth of dried up rivers, increase in wildlife, and more aquatic life. Even the number of animals being slaughtered for meat is less since people are scared to eat non-vegetarian food. Due to the lockdown, less animals are hunted, less sea animals fished for, and less livestock to raise and kill. There are enough reports and statistics showing the return of schools of fish and other wildlife.

These are all just observations I made. I am not trying to find a right or wrong answer, just merely stating some observations which one can ponder on.

Introduction

Adarsh

3 comments

17th Jun 2020

The time has come in that point of life where my passion and my desires of accomplishing some part of my life goals needs to be addressed and implemented before time runs out. Now when I say, “before time runs out” I don’t necessary mean literally, but rather to state that the time is NOW before something else comes up in whatever form it may.

Since the day I actually learnt to write properly- I don’t mean the ABC’s, but actually the day I realized I could speak my mind through words and actually enjoy it- was the time I wished to someday share my unique perspectives and experiences of a boy growing up with a rare genetic condition known as Duchenne Muscular Dystrophy (DMD) to the world.

WHY NOW???

Since that time when I learnt to write which was actually in the form of poetry sometime during the 6^th grade, my dad has always urged me to write and develop a stronger passion towards it. He is always thinking about the future and feels that writing will and would become a friend to me at difficult times. Unfortunately my zigzag lifestyle, my education, my life ambitions, and unforeseen life changing events kept becoming obstacles in the way.

Now 2 months in lockdown due to the global pandemic Covid-19 has given me the perfect opportunity where there are no other distractions (if you want to call it that) for me to develop a stronger passion to share my thoughts and perspectives with the world.

Other factors that are influencing me at the moment are the release of my dad’s book many months ago (where I was one of the editors) has inspired me further, the fact of me turning 30 reminding me that time is flying, and having my entire family around me (except for our youngest member who ran off to Canada to study😏 ) who are all being incredibly enthusiastic, focused and busy with their own projects/work/studies.