Story of an Everyday life..My Own Online Dear Diary
Saturday, 22 January 2022
Building Allyship among Women
Thursday, 13 January 2022
My Fight with Covid19
After successfully playing hide and seek with covid19 for two years. It finally caught hold of me in January 2022. My First 3 days of January 2022, literally went from "Happy New Year 2022" to "I am feeling weird pain in my body"!! The first two waves did take a toll on mental health. The side effects of Corona are long terms. I have seen it in some close members of my family. Many people have come out of the struggle with no strings attached yet I know many who have got long-term scars due to the disease. The delta variant, the omicron variant, and the flu, all three are spread out. I had fear of the virus because I feared how badly can it further affect my hearing. It is no secret that I struggle to understand what people speak in the mask. My reliance on lip-reading in conversation is important for communication. I was scared that what if after getting the virus, whatever hearing I have is also gone. This fear came because someone has told me that the virus activates the deficiencies/disease present in the body and worsens it.
The hearing aids technology has improved a lot. There are smart hearing aids. Hearing aids are now being connected to the laptop, phones, and every other technological device to hear better in telephonic conversations, to hear better in video calls, etc but the face-to-face conversations are always different. I know that I cannot converse like other non-deficient persons. I know that even my body language in terms of conversation is different from any non-hearing-impaired person. I always tend to avoid meeting too many people and to keep the conversation to the point. It is not a struggle, it is a simple acceptance of who I am. Every time I contract any sickness, fever, or cold, my hearing gets impacted. I started to hear less than what I normally do. When I got sick, I first thought it is normal flu and it will go away on its own. On day 1, I had fever and severe body ache. The kind of body ache which I had never experienced earlier. I don't like taking medicine for every minor discomfort, I am of the feeling that the more medicine you take, the more your body becomes accustomed to it. As soon as I got sick, my husband rushed to the doctor to get medicines, I was firm about not taking them as I thought fever will go on its own. He said take one dose, if it doesn't help then don't continue it. After taking the dose, I did feel relieved from fever and body ache but I could also feel that it hasn't gone. The fever and body ache has just got suppressed due to the medicines. It was a different feeling altogether.
For the next three days, I kept feeling weak. The moment of dizziness and confusion was there. I meant something else and would say something else. My voice became heavy. On day three, I felt like, despite the medicines, my body temperature is increasing. I thought maybe I should get the covid test done. Consulted my physician and he said to go for it. I was also getting weird dreams every night. Since I moved to a new district in July, I get one dream of screams in my ear. The scream dream is analogous to some firecracker bursting near my ear or something related to that. My jaws were also feeling very stiff. My hearing had deteriorated. I was frequently asking "what", " repeat ". I realized more I think about it, the more I will feel such sensation. I was in disbelief that I am COVID Positive. During wave one and wave two, there were the time when everyone around me was covid positive except me. Here, I hardly met anyone. I was wearing mask, I was washing hands and sanitizing hands frequently, yet I got covid positive. But, I guess, sooner or later the disease would have got hold of me.
I spent my day 1 in watching Netflix and I got new symptoms of eye twitch and eye bookers. I realized it may be due to spending too much time watching the series. Then I decided to spend my time reading books. Earlier, I was fond of Nancy Drew books then it changed to Sidney Sheldon books, then my Genre changed to reading romance books. Again I started reading murder mystery then spiritual books. Currently, I enjoy reading self-help groups. I decided to resume the two books which I was reading "The Saint, the Surfer, and the CEO" by Robin Sharma and "The Magic Mindset: How to Find Your Happy Place " by Preeti Shenoy. Both the books are good to read. and motivating. While The Saint, Surfer, and the CEO give many important life lessons on listening to what you desire. The Magic Mindset is more about how to look at any situation in a different way and how to get over any adverse aspect of life. Life is always like a Pendulum. Going through highs and lows and then ultimately coming back to normal days.
I realized being positive and looking at things with optimistic outcomes, does affect things. It gives strength to fight the disease with zeal. Though I am yet to fully recover from the disease. The weakness, dizziness are yet to end but I am sure the bad days are over and the coming days would get better.
Sunday, 25 July 2021
My Personal Challenges in Everyday Life as an Hearing Impaired Officer
So, it has been almost a year since I wrote "How feasible is Government Sector for a Persons who is hearing impaired? My Experiences: Part 1" of the series. Straight to the point, I don't think that government sector is feasible for a Person who is hearing impaired. Covid19 has made it hard. Lack of awareness about disability has made it hard. If you speak your concerns, you would be labelled as someone who is "Asking for other's pity and sympathy" which I have been told is not a good trait for an administrator. If you prefer to be quiet to your issues, either you are having lack of interest in the job or you are not having any issues at all, you just pretend to be disabled but your hearing is perfectly fine. If you prefer to fight for your rights on your own, you would be labelled as "Overtly Authoritative ". If you ask anyone close to you to fight for your issues , you would be labelled as "Cannot fend for herself".
The first challenge is meetings. Even if you let the officials and superiors know well in advance that you rely in lip reading, no body will give a damn to make meetings more accessible. The meetings are really long. Some can even go for two-three hours or even four at stretch. Meeting still would be conducted with people speaking in mask, and I am always left wondering that what is happening. Is people discussing my sub division or what is being discussed. Why are people laughing or why does this person seems annoyed. My mind is full of these thoughts. Should I spend all time in surfing through my mobile but what to read or surf for so long! Should I excuse myself or not go to the meeting at all, but then wouldn't it be rude? Should I announce in every meeting that I am hearing impaired so please speak with mask off? Should I bring a book to read in meeting? There are numerous thoughts which keep moving in my mind . Honestly, every meeting feel like utter time waste and torturous to me.
The second challenge is made to feel inferior or subordinate to people around you. It is no secret that work place gender ratio is highly skewed. Most of your superior would be men, juniors would be men. Most men fails to understand the issues faced by a normal women at workplace. It is probably foolish of a women to expect them to understand issues of a disabled women. But, most men do try to ascertain their superiority by either not listening to your concerns or if they do politely listen to you, to only focus on one sided point and label you as sympathy seeker. A while ago an Administrator told me "So what if you cannot hear, you can see. Replace your sense of hearing with sense of vision. Problem Solved." Well, I am still ascertaining on how to do this magic! I wish, I was told "how"part as well. If I travel in Non Ac Vehicle, due to too much wind, I tend to experience tinnitus and ear pain. Thereby reducing my ability to hear even further.
The third challenge is loneliness. Every-time I move to a new place, as much as I enjoy, I also feel terrified on how the people at new place would treat me. Will they be good to me or will they be able to understand my concerns. Also, as I cannot understand giggles and whisper and jokes, the meetings also tend to get monotonous for me, elucidating the feeling of being alone. I do enjoy being alone but sometimes being surrounded with no support but judgemental eyes who don't try to understand your condition does make you feel scared and aloof. There is lack of sensitisation among people as well.
The fourth challenge is my own personal struggle. Everyday is a challenge. One day could be happy one , another day could be stressful. Stressful day leads to tinnitus. The constant buzzing sound in ear is irritating and cause lack of proper sleep. Lack of Proper sleep, makes next day tiring. More the tiredness, more the tinnitus increases. On top of it, the rainy season and continuous rains, causes ear ache and itching. There are days when I wake up The tinnitus, ear ache and tiredness, due to which I find it extremely difficult to concentrate properly on my hearing. Due to inability to hear properly, I do get irritated. The more I get irritated, the lesser I am able to hear and understand things. Also sometimes I feel due to irritation, I get embraced in negativity too. I need to work on this. Every time I am able to talk on phone with any third person for a longer duration, I consider it as my own personal achievement.
The fifth challenge is talking on phone and talking in person. Different people have different dialect and accent. It is difficult to grasp all the accents. For some, it is easy to understand and while for some other, it is difficult. Talking on phone as been very big concerns for me. While, I have started to understand the basic talks yet once talk shifts to specific village name or to something Unexpected, I find it extremely difficult to fathom what the communicator is trying to communicate. I also find zoom calls and video conferences extremely challenging,
Not that these challenges are open headed, there are multiple solution to it. Some has very simple solution. It is not a mayhem task to make a meeting disable friendly with respect to hearing impaired. A well made agenda, sharing of data and information through mail, WhatsApp or any medium either before the meeting or during the meeting can easily bridge the gap. Even when oral point are being communicated, they can be shared on screen by suitable mediums. More awareness could easily resolve the second challenge. I do acknowledge that awareness also need elaborate planning. To overcome the feeling of loneliness, indulging in new hobbies and learning new things could be a fruitful experience. Even though, my art skills are very poor, I try to draw and paint. They make me happy.
It is bitter but Most people in Government Offices doesn't care about a hard of hearing impaired person. Probably the one of the reason being there is "no physical pain" which a person with locomotor disability has. Apparently, I have also been told that being hearing impaired is not serious issues as visual impaired because "hearing impaired" can at-least see things. Being two years into this service, I have began to feel that has joining this service been biggest mistake of my life? Was my Job at Oracle Financial Better than this one? The reason is not the nature of the job but the attitude of work place environment. People , there were more warm, more understanding towards disability, made more effort to imbibe but many people in Administration are highly judgemental and show disregard for respecting a disable person.
Disclaimer: The views expressed are My own and might not necessarily echo views of other hearing impaired(HI) persons.The intention is solely to give an insight into my own experiences as an HI. The post by no means intends to Malign any institution/person.
Sunday, 26 July 2020
How feasible is Government Sector for a Persons who is hearing impaired? My Experiences: Part 1
Under the Act of 1955 (Equal Opportunities, Rights Protection, and Full Participation), Central Government provides 1% Horizontal Reservation for a persons with hearing impairment(HI)* with objectives to facilitate normal life for such disabled persons. But does, providing reservation alone tantamount to well being of HI or any Persons with Disabilities? What has the government done to provide ease of equal working environment to them as that of any abled person? Why is it even getting proper training as an abled person is getting yet a struggle for me? This article is written based on my own experience as a Hearing Impaired trainee IAS Officer.
When I joined LBSNAA, some esteemed faculties did try to ensure that I get equal learning opportunity but sadly this was not the case once Covid19 pandemic came into existence. Not that I blame them, but every trainee whether abled or disabled should be kept in mind when facilitating online training. One module which I did not like was movie review module. I had to keep searching for a movie on other OTT platform as those provided by the academy was without subtitles. Even for other modules, some audio-video use to get uploaded. I always have to keep informing, I am hearing impaired, I don't understand video modes without closed caption. This has remained my constant struggle. It is not that Webex, zoom doesn't support closed caption feature. They do but how willing are government training institute to explore them? This is just one part. Recently my administrative training started in UPAAM( Uttar Pradesh Academy of Administration and Management), and again due to pandemic, the training got shifted online. Again, I have to go through all the struggles. Some faculties do-not even have Presentation Slides, the classes are completely oral-based. Some faculties have slides with a few bullet point written and the explanation are oral. The academy does provide audio for a later hearing, but when a person is hearing impaired how is it going to help them? I have to put my full energy to understand what the listener is saying on video call yet I fail to understand most of it, but it does drain all energy out of me. The training is becoming less of the learning experience and more of tormenting experience for me. Though I must mention that when we had 2-3 days of institutional training, the institute tried to explore options for me like the use of Google speech translator.
The pandemic has put everyone on edge but being a person who relies on lip-reading, it has made it very difficult for me to communicate. It also reduces the level of speech transmitted from the mouth. It is again not a good experience to witness people discussing things and me being mute spectator trying to get what is the topic about. It has led to a reduction in social interactions. Most people have to remove the mask to speak to me, this put them at risk as well as me. The imagination of me contracting the novel coronavirus and being greeted by people who are wearing the thick mask with PPE KIT and muffled speech coming out of it is enough to bring a shiver down my spine. Also communicating at 2 feet distance distorts the sound quality and it is a big challenge. Nowhere have I seen people promoting transparent mask to help the hearing-impaired community. I read that Tamil Nadu and Uttarakhand are coming up with such mask.
As part of district training, we have attachments with different departments to understand it's functioning. Though most of the officers are accommodating yet I also have some bitter experience. I find it difficult to understand new accents. I do catch some accents easily but most are difficult for me to catch up immediately. When I don't understand, I do make it a point to let the speaker know that I am not following and that I am hearing impaired. But, some insensitive government official, take it an opportunity to chide me. I vividly remember in one such attachment due to my inability to understand the official, I was questioned as "from which state do you belong that you are not understanding"? "Haven't you read these during your Civil Services Preparation days"? "Don't you know Hindi"? "Why are you not understanding this"? Such comment is deterring and also insensitive. Another part of this coin is being constantly judged. "Ma'am I don't think you have much hearing problem, you are understanding me properly"? "Ma'am, how much is your disability"? I do get some unwelcoming sympathetic remarks as well. "Ma'am this service is basically of pen and paper, it would be okay for you." Though to facilitate my training, my mentor did provide me with an assistant who use to note down important point and share with me later. Some officials would communicate only with her as if she has come for attachment and not me. I expect people to do eye contact with me as well and not just with my interpreter.
Another aspect is the video conferencing meetings which are being encouraged these days. The struggle is the same as mentioned in the first paragraph. I don't know why there is no active use of closed captions/ Real-time Caption. Exploration of online technologies might help. There is so little exploration/ guidelines on how to provide equal access to disabled employees in the Government sector. I tried to search for any act/rules pertaining to it but couldn't find anything substantial in Rights of Person with Disabilities Act,2016. So what are the options? How can we government sector more feasible for a hearing-impaired persons? We don't need to do any extra effort, just small steps in creating a feasible environment would have a long-reaching effect. Some minor things which can be done:
1) In Online training, providing closed captions would make it more accessible to hearing impaired. It can even help others read something which they may have missed. It is not too much to ask for access to all training material to have a fair chance in carrying the job's responsibilities properly.
2) Meetings can be conducted with proper agenda, well-planned notes on what all are to be discussed. Written as well as oral communications should be encouraged. It also helps if people avoid talking over to each other and let one person speak at a time to get clarity on who the speaker is. Moreover, giving a proper seat with good visual access ample lightning and direct line of sight of the primary speaker would also help. Some speeches of higher officials are also planned, they can be easily transcribed.
3) Technological innovations like google translate, speech to text conversation are useful for one to one conversation but for meetings with many participants may be a professional captioner or a live captioning solution can help ( I don't know if live captioning or professional captioner exists in India)
4) In Covid19 times, Production and encouragement of transparent face mask can help persons with hearing impairments as people like me rely on lip-reading and facial expressions to communicate.
5) If you know a person with a hearing disability, ask them their preferred mode of communication. Try to text and communicate if that is preferred.
6) Do not try to belittle others or be judgemental towards them. Be a responsible person. You don't know what struggles a person is going through or how much effort a person is making to fit into mainstream society. If not encourage, least you can do is to not discourage.
Just providing reservations to bring a person with a disability into a job is not enough. There should be enough means to sustain them so that they also feel encouraged and motivated to contribute to societies. Maybe there should be training for some support staff who assist persons with disabilities in carrying their duties. It does take lots of energy and effort to understand and actively participate in the communication. Equal opportunities are not when disable have to repeatedly ask for support for equal access, it is when we are sensitised enough to provide them equal access without them asking for it every time