ALOK SIKKA SPEAKS AT CARETAKER TRAIN’S MEET

Today is a very important day and I am pleased to be present here. The kind of importance this project has got can be ascertained by the fact that being rather closely associated with AADI, the number of queries I get for this project are much more than any other project associated with the disability movement.

Personally speaking, I associate the role of the caretaker with the entire self-advocacy movement that we people have been stressing on in the last few years. I personally believe that good caretaker would be, if I may be allowed to say so, like self-controlled remote system for a person with disability, who switches on and off just according to the need of a person with disability. It means, when such a need arises, he happens to be there but at the same time, is not a disturbance in the life of a person with disability and rather than enforcing himself on the person with disabilities, he gives him the much needed space.

This can be a slightly difficult situation to be in. For example, whereas watching a late night movie is a personal issue for me and I would not like my caretaker to interfere in that but being a specially trained person that you are going to come up with, such a person should be able to give a fitting and an appropriate answer to a person on the road, if such a need arises and explain to him that what my disability is and should be able to reply if I am not able to reply to a man making fun of me.

Of course, I do not need to point out that though one can hire any person for the usual household needs like cooking, washing, dusting but it is the special needs of person with disabilities that a professional caretaker will cater to and if he cannot cater to those special needs, then there is a problem. A caretaker must be in a position to handle the special needs of a person with disabilities with that extra ease and perfection. So apart from those basic services like cooking, washing and cleaning, a caretaker should be able to attend to those special needs of a person with disabilities like feeding and toileting. While doing my field work for today, what I came to know is that if you shy away or are uneasy about any of these special basic needs of persons with disabilities, its better to not take up this job. To add to it, there is a need for a caretaker to be humble, soft spoken and patient. Your job is to explain all this to the caretaker in an a manner that he understands his duties while going into the field.

Personally speaking, what worried me when I heard of this program initially was the fact that will a caretaker become another domestic helper in the long-run? For me, this will defeat the very purpose of providing a helper. And that is where your role, as a professional comes in. You should make it very clear to the concerned family that for a caretaker, it’s the person with disability and his needs that are important and if they need a person for any other work, they should try other sources.

You also need to cater to the gender based needs of the services For that you need to provide an equal number of male and female caretakers.

But, this by no means signifies that if there are no gender based issues, the people who use these services do not have any problems with the caretakers at all. Though, the national trust says that while providing a guardian, it sees to it that there is no misuse by the powers given to the concerned person, it still needs to be ascertained whether those provisions really work on the ground. Similarly, you need to ascertain that there is no misuse of power from any side in this case also. A system needs to put into place, where you can keep in touch with both the persons with disabilities, their families and the caretaker to see it all sides are satisfied with the arrangement.

I am also slightly concerned about the timing of providing the caretaker. As per my understanding, though it would be difficult to begin with right now, at some point of time you need to work this out with the family. Though, certain families may need such services from day one, it needs to be worked with accordance with the concerned family that what is the appropriate time of providing a caretaker. Since both person with disabilities and the caretaker need to adjust with each-other, it may be better if you can talk with the parents to ascertain the appropriate time of providing the caretaker so that both the person with disabilities and the helper get the due time to adjust to each-other.

Then comes the all important issue of training. Though I do not know how you will work this out, but the training will have to be both general and specific. Moreover, at both general and specific levels, you need to work out your methodologies in such a way that the caretakers get the much needed practical training to provide the services.

You need to train the caretaker according to the specific needs of the concerned person with disabilities. And since the needs of two persons with disabilities may be entirely different from each-other, the caretaker should be ready for any kind of duty. The duties may change entirely, if by any chance, from a duty of a less disabled, the caretaker is asked to help a more difficult case. Moreover, duties may also change in case of any mishap and the caretaker should be well-prepared to handle such a situation. Though, some people may disagree, I feel you need to match both the physical and intellectual needs of the service user with the caretaker. You cannot and cannot appoint a thin caretaker for a person with disability who is slightly overweighed. It is your duty to work this out both with the person with disabilities, their families and the caretaker so with the right person at the right place, you can provide the best services.

To end with, this is a program where the trained professionals are going to take of great responsibilities. But, your responsibility is even greater since you need to train these professionals and if they fail in any way, the responsibility of that failure will be solely on you.
1098 W0RDS.
_____________________________________________________________________________________________________________________________

Advertisements

ALOK SIKKA SPEAKS AT INAUGURATION OF 2009 BATCH OF TTC COURSE AT AADI

Reproduced is the test of Alok Sikka’s speech at the inauguration of TTC course’s batch for 2009 for AADI.

A person with disability, especially a person with severe disability like me lives in two different worlds at a given point of time. There is one world that is just the same as you live in but for me as person with disability there is one other world that is far more important than the other world, and that is my immediate world that consists of my family and the rehabilitators that I am so closely connected with.

Off late, at least I have had this feeling that to a large extent there is a difference between the parent’s perspective of disability and a professional’s perspective of disability. The problem for a person with disability is that these two perspective of disability, as seen by parents and rehabilitators more than often are entirely different to each other. And eventually it’s the person with disability, who is caught in between. You see, since most families do not have a prior experience of tackling disability, they usually get baffled when they realize that one of the members of their family is going to go through all this. That is where your role comes in. Having worked in the field, you should be able to help the parents realize the true and appropriate potential of a person with disability and to develop it in the right manner so that a person with disability can overcome his weakness and lead a successful life.

If you have a look at all the success stories in AADI, one very common feature in all of them were that there was nothing special in them and neither was anything made out to be special for them. The more you yourself try to replace the word special with usual for a person with disability, the more you would help him. Let his life be as usual as a possible. Let him go to school at the age of three, play and fight with his friends, get scolded both at home and school as a normal child and he would grow up just like others. It has to be a gradual process. If someone has a disabled teenaged child and gets inspired to see another disabled teenaged child get into limelight after clearing his class 10th with high marks and want the same to happen to his child, unfortunately he is too late. That process had to start at the age of three itself like any other child. But who is going to communicate this to the child’s parents and that too at the right time? Its you.

Your relation the person with disability should be such that irrespective of his ability or disability, the person with disability, for whom you are one of the most important persons of his life, is able to communicate and discuss any issue with complete freedom. Its you who have to create that atmosphere and make this dream a reality.

Of course, I personally feel that the biggest rule in for you while working in this field is that there are no rules. Your reaction to a situation will depend on other person’s ability, his circumstances, and other socio-economic conditions. Rather than expecting him to change, its you who will need to change and see the world from his perspective and needs. Two people with similar problem may need a totally different solution and you should be ready with it.

In short, a person with disability needs your support right from the day he is born till the day he lives. You need to not only support him and his family all along in his long period of time but also need to make him feel that you are working along with him rather than working for him. Let the person with disability lead a norm.al life, knowing that you are there to be with him whenever he needs you. For you, it should be meaningless if that so called need, whether to overcome his disabilit6y, or any other problem like social needs or emotional, needs are for a moment or life long.

Of course, needless to say, during the course of time, you will realize that working in the sector, you gain more than you give.
722 WORDS
_______________________________________________________________________________________________________________________________

MARGINAIZING DISABIED AND THE DISABILITY COMMISSION

The recent post put up by Komal Gupta,( KOMAL GUPTA BREAKS THE LAW AND GETS EMOTIONAL ATYACHAR AS PUNISHMENT) is surely a very interesting one and makes you think. Taking the post forward from, where Komal has ended his write-up, it can be said that disability is a very personal issue and unless and until you yourself go through the various problems faced by persons with disabilities, you cannot understand their pain or find an answer to their problem.

Whereas, we accuse non-disabled people to be partial and not understand our problems, it is most unfortunate that even we as persons with disabilities fail to understand each-others problems and difficulties. At least I personally as a person with disabilities can be accused of not understanding and taking up my friend Sonu Bhola’s issue properly and I should be ashamed of it.

As mentioned by Komal, in an incident that took place a couple of weeks back, while returning from his office one fine evening on his specially made disabled friendly scooter, Sonu was stopped by a traffic police inspector and was asked to pay a monetary fine. Further, when Sonu, a person with Polio, tried to take up the issue with the concerned traffic police officer, he was told, “We are just doing our duty and we are suppose to challan a certain number of people and you are one of them.” Thus, despite no fault of his and the concerned inspector knowing Sonu’s condition fully well, Sonu was challaned and had to pay a monetary fine and being a person with disabilities, that he is, he could do nothing about it.

As Komal’s post also seems to suggest, since persons with disabilities are an easy target, who due to their physical problems cannot protest, the police allegedly feels that they can get some easy bucks out of pocket.

But, after going through the incidents that took place with both Komal and Sonu and the feeling of pain the you go through after reading the discriminatory treatment that was given to both of them in these cases, you also tend to feel that there is a strong and an urgent need to find a solution to these problems,

If you ask the disability activist like Dinesh Gupta of the Friends Organization, they point out that the Disability Commissioner, which has been provided under the Persons With Disabilities act 1995, is an important instrument in the hands of persons with Disabilities, whose job is to address the problems and injustice caused to them.

In fact, even ordinary people, who are not directly connected with disability and disability movement in any way also realize the important of the Persons with disabilities act 1995 and the powers it provides to the commission of disability to ensure that person with disabilities get their dues from the society., A recent example of this was seen, when being called a person with unsound mind and insulted for reminding for payment of petroleum products that he had sold to a customer on credit, Mr. Komal Gupta , a graduate with Cerebral Palsy, threatened to take the matter to the commission of disabilities. Though he was insulted by an employee, after he informed the concerned company about his decision, Komal immediately received a call from the top bosses of the company, who then apologized for the rude behavior of their employee.

The cases of both Komal Gupta and Sonu Bhola once again highlight the insensitive behavior of the ordinary people towards persons with disabilities. It is this insensitivity that makes persons with disabilities a soft target even for agencies like the police. And eventually when this insensitivity leads to injustice then as a last resort persons with disabilities have to take the matter to the commissioner of disability to get such small matters resolved and to ensure that no one takes an undue advantage of them due to their disability.

Yet on the other hand, if you have a closer look at the entire issue, you may realize that both Komal and Sonu are among a very few selected people, who can be termed as extremely lucky. At least, being the self-advocates that they are, they know that there is a disability commission out there, which looks into the interests of persons with disabilities and takes up their case, in case such a need arises. There are thousands and thousands of persons with disabilities and their families even in a metropolitan city like Delhi who don’t even know that such a commission exists on the ground and takes up their issue.

This rude reality became clear, when despite the law that the disability certificate for persons with disabilities must be issued within one month of application, it was found that in certain cases persons with sever disabilities have to wait till 18 months to get this small piece of document. Moreover, the applicants are so scared to raise their voice against the hospital authorities, fearing that if they speak, the hospital will stall the entire process of issuing the certificate and they will have no-where to go.

The very idea of setting up a disability commission is based on the concept that since persons with disabilities are a marginalized sector, who often being subjected to injustice have to suffer and therefore need the services of such a commission to help them out. Yet, the fact on the ground remain that it is only the more educated and alert persons with disabilities like Sonu Bhola, Komal Gupta and Dinesh Gupta, who understand the concept and the working of this commission and take its advantage. Most persons with disabilities still accept all the injustice that take place with them as their fate and do nothing about it as all. Since there is no uniformity among persons with disabilities to bring every act of injustice against them to the notice of the commission, they are being repeatedly faced with all sorts of humiliations.

There is a need for the commission of disability to spread awareness regarding their activities. This is a two way process where the commission should speared awareness about its activities and take up more cases to ensure that persons with disabilities have faith on them and share their problems with the commission. It is also the duty of the persons with disabilities to come out in the open and report every case of injustice to the commission. It is only then that ordinary people will know that persons with disabilities are also an equal part of the society and the kind of incidents take took place with Komal and Sonu will never take place again. Though it is unfortunate but only strict laws and reporting against such cases can change the situation.
1124 WORDS
___________________________________________________________________________________________________________________________________

ON THE OTHER SIDE OF THE STORY

This is my second personal post in succession and writing this is not easy. To begin with, I request that if anyone connected or interested in disability movement reads this post, please write a few lines expressing your views on this issue since I am personally looking for a few answers here.
And like my previous post, I am staring with unfolding some of the pages of my life, which are now a part of history.

Let me start with long back as my first thoughts go to the year 1979, only within six months after The Spasics Society of Northern India or AADI as we know it now, came into existance. At that point of time, we were working with a man, Oh how can I forget his name since I shared mine with him. Yes his name was Alok, Alok Roy to be precise and being a direcor and head of a threater group in Delhi, he along with his group was helping us enact the famous play Animal Farm. You may have heard this famous story of of two Pigs, who motivate a group of animals to kill a ruthless farm owner, who beats all animals at his farms mercilessly. Once the farm owner is dead, the animals decide to set-up a democratic governing system at farm but slowly the Pigs themselves turn into dictators, even more ruthless and cruel than the original farm owner ant thereafter for their selfish interest, they themselves destroy all the principles, they once stood for.

Now, let me take a leap forward and turn to the year 1993. Being a young adult with disability, as I was trying to understand the concepts of disability and the movement itself, I got the unique opportunity to visit Kolkata, where I along with some of my friends was to take part in one of the biggest event in the history of the disability movement in India, the meeting of Disability International. I can still recall that on being not allowed to raise a point, when I objected, I was told, “In the disability community, who listens to persons with Cerebral Palsy (Cerebral Palsy means a group of non-prograsive condition of a person charecterized abnormal motor control posture resulting from brain insult or injuries occuring in the pre-natal or infant period of development) anyway? You people are actually considered bastards in the disability community.” Yes, at that point of time, those words pierced right through my heart.

I am now taking the liberty of clubbing the next three incidents that I want to recall together. Year 2002 it was when, while undertaking a computer course in ASRA computer centre, a special computer training centre in Delhi for persons with disabilities I came across Saurabh Kumar, a person with Polio. Soon, as we became friends, Saurabh asked me, “What’s your disability?” I replied, “I am a person with Cerebral Palsy.” “Oh Yes,” said Saurabh, “Though I have never met or interacted with a person with Cerebral Palsy, I have heard about this disability” About a year later, I received a phone call from Nitasha T Kachru, who at that point of time being associated with Balloons and the their disability related project Disha requested me to be a part of a awareness raising program at a premier school in New Delhi’s Dhaula Kuan Area. On the day of the program, she introduced me to a young Visually Impaired person and tried to explain my disability to him. “Oh Yes,” said the Visually Impaired person, “I know what C P means. You don’t have to explain.” Again, in 2005, when through Saurabh Kumar, I was introduced to Association of Disabled for Development (ADD), an organization by persons with disabilities working for their own cause, I did not have much problem in explaining about my disability to the office bearer of the organization including Sonu Bhola, Kundan and Pradeep Raj, who despite being persons with polio, were all quite familiar with the term C P and therefore accepted me as a part of ADD in the most natural way.
The next experience I want to recall is my visit to Bangalore in 2006, where I was accompanied by my friend Zamir Dhale. I can never forget my introduction to Zamir. Since Zamir is a deafblind person and cannot even speak, his interpretator, while using a special touch and sign language, which Zamir uses for communication said, “He is Alok Sikka. He is a person with Cerebral Palsy and will be travelling with us to Bangalore.” A nod by Zamir said it all since being familar with the term Cererbral Palsy, he needed no further explaination as to what my disability was.

A couple of days after my return from Bangalore, when I got the opportunity to attend the World Disability Day function at India Gate in New Delhi, everybody present there was not familiar with AADI as an institution but also with the word Cerebral Palsy.

Further, Cerebral Palsy is now a part of both the Disability Act 1995 and the United Nation Charter for Persons With Disabilities, to which India is a signatory, making the disability well known both within and outside the disability sector. One of the major factor that has contributed to this change in a short time span of 1993 to 2008, is that institutions like AADI, who originally worked only for Cerebral Palsy are now working along with the rest of the disability sector. As a result, they have been able to draw the attention of people working for various disabilities towards Cerebral Palsy and make them understand about this disability in a better manner.

So far so good. But if you thought I had finished recalling my memories, you are wrong since I am still not through with it. I now jump to just recent past, December 2008 to be precise, when I met with a serious accident and was bed ridden for around 5 months. And it was somewhere in the beginning of May 2009 that I informed my friends that after the tough time that I had been through, my life had started getting back to normal and I was back to driving.

Of course, as expected, when some of my close friends heard this piece of news, they were more than happy and we decided to meet and celebrate both my recovery and getting back to driving on my own. So three of us, my friend Mr. S, Mr. M and myself decided to make use of holidays at AADI and meet one fine afternoon.

As we met for the get together that we had planned at AADI, I realized that I had some work at the first floor of the building and I requested Mr. M to help me propel my wheelchair and take me to the first floor of the institution, something he readily agreed to. But as we passed through the corridors of the first floor Mr. M stopped for a moment to have a glance at one of the rooms and what he saw was shocking for him. Though, officially the institution stood closed for summer vacation, some of his friends were not only present in the institution but were also working as usual. Mr. M, who was visibly upset to see his friends there complained, “They always call these fellows for all extra work because their hand function is better than mine and I get left out because being a person with Cerebral Palsy, my hand function is slow.”

No, it is not as if whatever my friend saw and whatever happened with him that particular morning was intentional in any way. After taking over as the governing body member at AADI, this was one of the first issue that I attended to. Whereas at that point of time, I had mistakenly proposed a program where preference should be given to a few selected students, my suggestion was rejected by the governing body at once saying that equal opportunities need to be provided to all persons with disabilities along with giving priorities to those, who need maximum help. Countering some of the claims that I had made in my discussion with her, the executive director of AADI told me at that point of time that policies should be such that they benefit the maximum number of people in the best possible way, with emphasis on those, who need these services the most.

But just like what my friend Mr. M saw in that room, though unintentional on part of everyone concerned, the story of the disability movement is similar to that of the animal farm, where the power rest with only a few less disabled persons, who utilize the movement to the best of their personal advantage and speak just for themselves, leaving millions suffering and wondering what are they achieving from this movement. It is a terrible situation, where even the so called self-advocates speak only for themselves, leaving behind million of persons with disabilities speechless. This is specially true with regard to the persons with neurological, including the mentally retarded, mentally ill and other severely disabled persons, who neither have the platform nor the ability to express themselves.

A very good example of this is my friend Mr. M, who is struggling to come to terms with the fact that the best of opportunities in the organizations working for the persons with disabilities go to those who either are less disabled or are having other disabilities apart from neurological disabilities. Further my friend Mr. M has no one to speak to. Can one imagine the state of mind he must be going through at present? And if you thought it was the plight of one person, think again. You will be shock to know that thousands of persons with disabilities suffer from this problem as the problem does not exist only in case of cross-disability but within each sector itself. For example, a couple of years back when I had an opportunity of attending a meeting of an organization of a visually impaired persons, those totally blind complained all the opportunities in the sector go to people with low vision and they ultimately get nothing.

Its very easy for we, the pioneers of the movement, to proudly raise our head and say we are working for each and every disabled. But in doing so, if we are ignoring the interest of those, who need us the most, we are a failure.
At the end, I would just want you to stop for a moment and think from the point of view of Mr M. Is the price he is paying for integration of Cerebral Palsy into disability sector worth it? Please pen down a few words about this issue and let me know.
1801 WORDS
__________________________________________________________________________________________________________________________________________________

BEING SELF-ADVOCATE

Hopefully, my next two posts are going to be a few pages from my personal diary, which are going to take me on a trip down the memory lane.
Beginning of August 1993, I was back to figuring out what to do next after completing my graduation, when one fine evening, in fact quite late by my standards in those days, I received a call from my good friend Amrit Pal Singh. All Amrit said, “There’s a meeting scheduled for 2 p m tomorrow at The Spastic Society of Northern India (SSNI). I have been asked to inform you. Kindly be there.”

The next morning, I took my Scooter and I was off to SSNI. And, as Amrit reached the institution, which at that point of time was primarily working for persons with Cerebral Palsy, I came to know that the scheduled meeting at 2 P M was with none other than the then Chairperson of the institution Mrs. Sushmita Nundy herself.

Of course, as expected, Mrs. Nundy was not only pleased to see us but she was thrilled to know that both of us, whom she had seen from lower classes were now graduates. Further, I can never forget her words that particular afternoon as she told both of us, “The disability movement the world over is going through a change and young guys like you are coming up as self advocates and taking up their own issues and speaking for themselves. Its time young boys like you come out of your shell and throw yourself out in the world, and just like other self advocate, take up your own cause. This has nothing to do with disability. When I was your age, my parents too asked me to look after myself. You will fall once, twice but third time, you will be able to stand and be successful.” She said.
Though I officially entered the self advocacy movement after those inspiring words from Mrs. Nundy, my true introduction to the concept of self advocacy came only in the year 2004 when along with a couple of other friends, I attended the disability and leadership workshop in Mumbai.
The visit to Mumbai in 2004 was very special and important considering that it reaffirmed my faith in the fact that though I have always been identified with my disability, I am first an individual with same need, desires and rights as any other individual in this world. In a way, it also reconfirmed what Mrs. Nundy had told me approximately 10 years back, this is my life and therefore, despite being disabled, like any other individual in the world, the right to decide what’s good and bad for me and what is the best in my interest, lies only with me and if the need so arises, I need to stand-up and speak for myself. Moreover, while deciding and speaking for myself, I may falter not only once or twice just as any individual but being a disabled that I am, I may need endless opportunities to prove my worth. But, that by no means takes away my right to take control of my life. In short, my Mumbai visit was an eye opener, which made me realize that the self-advocacy movement apart from teaching other people, which includes both disabled and non- disabled, about the rights of persons with disabilities and the disability movement, is also about teaching yourself and ensure that first of all you as a person with disability have a control over your own life and the freedom to take your decisions, however big or small they may be.

It’s as simple as this. If I want to see a late night movie on the television today, then like any other individual of 38 years of age, I have a right to do so. Nobody has the right to enforce a decision on me, just because I am a person with disabilities and therefore cannot do certain things the way others can. My disability does not take away my right to decide about issues of my own life, how ever big or small they may be. My life as an activist in the field of disability starts from here, when I first start to take the basic decision of my life according to my liking and choice and speak for my own self.

But, what I forgot in all my enthusiasm is that like in any other aspect of life, even in the case of disability, the theoretical and the practical aspects are entirely different from each other. Whereas the concepts that I had learnt in Mumbai taught me that my life as an individual and my disability are two totally different aspects of my life, back home its one and the same. It means your ability to make choices and lead your life your way depends entirely on your disability. The more disabled you are, the less freedom you get to live your life the way you want to. This is a hard reality of disability in India, which throw all the concepts of self-advocacy out of the window.

So, whereas the concept of self-advocacy are doing wonders in western countries, the disabled in India have in fact not come out of the charity mode. They still do not know what speaking for themselves means and therefore accepted their present condition as their fate. Many persons with disabilities unfortunately are still following the medical model of disability, where there is a clear distinction between service provider and a service user and a person with disability is just a service user, having no say in his own life. Further, the situation is so bad that even if someone tries to help the disabled by showing them the right way, they tend to resist.

According a consultant working in the field of disability for more than 25 years, “The problem is that in India life takes a set pattern. You are born, at the age of 3, you go to school, complete your 10th, go to high school, college, settle down with a job, get married, have kids, who then will follow this pattern all over again. The parents attitude towards a child changes as he grows up and goes through these transitions to slowly be an independent man. If you miss even a single link in this chain, you are considered abnormal and your life is considered incomplete and meaningless and thereafter you are not taken seriously by anyone. And since a person with disability does not go through these transitions to ultimately be independent, he is also not given the independence and the liberty to take his own decisions.”

Yes, some self-advocates have come up, but having them as self advocates is even more dangerous than not having self advocates at all. We will try to understand this in greater detail in the next post.
Well, keeping all this in mind, while discussing the issue of future program for personas with disabilities in a meeting held recently, when a proposal was made to call self-advocates and other professionals in the field of disability from developed countries to hold seminars and train persons with disabilities in India, I had opposed a proposal. Unless the trainers know the ground realities of persons with disabilities in India and as Mrs Nandy said, the so called advocates are not ready to come out of their self-imposed shell and take some initiative, the advocacy movement isn’t going to go far.

So, what is the way out because when there are questions, alongside there also have to be some answers. Unfortunately, when I thought of writing this post, I thought of putting it into two parts. One of course, was this particular post and then another of about 400 words, which would try to address some of the issues raised in this post. But, as I showed some of the contents of other post to some of my friends, they said that I must be the most foolish person on this planet to even think of writing such a post. I haven’t given up though and hope that surely at some point of time, I will write that post.
1368 WORDS
_______________________________________________________________________________________________________________________________________

HELP FOR PWD

A non-government and non-religious organization called AKHIL BHARTIYA VIKLANG VIDHWA VIRDHA SEWA SAMITI proposes to organize a camp for persons with disabilities on April 12, 2009, where it proposes to help persons with polio access free medical aid. The camp to be organized at BASI VIKAS KENDRA NANDA NAGRI, will help children below the age of 17, who are person with Polio, get free access to qualified Orthopedic surgeons, who will guide such people regarding surgery and other assistive equipment’s needed to make their life more independent. Wherever possible the assistive equipments will be provided free of cost to the needy persons with disabilities.

VIKLANG VIDHWA VIRDHA SEWA SAMITI has been working for the cause of underprivileged for the past 18 years, helping the widows, the aged and the persons with disabilities.

Note: The information given above is courtesy Mr Sonu Bhola, General Secy. THE ASSOCIATION OF DISABLED FOR DEVELOPMENT. Mr Bhola himself is a person with polio.
159 WORDS
_________________________________________________________________________________________________________________________________________________________________________________________

LACK OF AWARENESS CAUSES BIG CONCERN

You know, we Indians and especially those living in Metros like Delhi are very funny people. When it comes to your ordinary day to day life, you as a citizen may actually care a damn about the law or the rules and regulations that you need to follow to prove yourself a good, educated and well-mannered citizens of the society, city or this country, but more than often, when it comes to helping and doing something for others, you suddenly remember these rules and regulations from no where. So, it means, when it comes to your own personal benefits, you may throw all the rules and regulations out of the window, but when it comes to doing the same for others, you somehow seem to show attitude and go to the extent of not understand or appreciating even the genuine problems faced by others.

This is precisely what happened with Komal Gupta, a 37 years old person with cerebral palsy who uses an automatic motor driven wheelchair to move about since he is unable to walk. It so happened that Komal, who owns a petrol pump in the Padpadgunj area of East Delhi, was sitting at the petrol pump, as he does everyday, when a young man came across to him and offered free coupons, which offered rebate at the new branch of Moti Mehal restaurant. Since Komal, despite his severe disability, loves going out and eating out, as he is fully independent on his wheelchair and has visited many malls and restaurants in the last couple of years, he decided to check out this restaurant as well. And with these free coupons in his pocket, Komal needed no further excuse to try out some delicious dishes at Moti Mehal.
But here came a rude shock. As Komal reached the concerned mall, Komal was surprised to know that though it is a newly constructed site, there was neither a ramp nor a lift, which he could use to reach the restaurant, situated on the first floor of the mall. Though Komal was highly disappointed not to find a ramp, yet since he had already come to the mall and had to buy food in any case, if not from here, from somewhere else, Komal decided to send his driver cum helper along with the discount coupons to go and get the food packed for him.

This was one duty, which Komal’s driver had to undertake on a daily routine basis and as he stepped out to go to the restaurant, both Komal and his driver thought that today was no different.

But that wasn’t to be. To Komal’s disbelief, his helper came back and told him, “They are not ready to pack food. They say, if you want to make use of those discount coupons, you will first have to sit and have a bite in the restaurant itself and then they will pack the rest for home.”

Komal just couldn’t understand the logic behind this condition. “I sent back my helper explaining that I am physically challenge and lack of availability of either ramp or lift makes it practically impossible for me to reach the restaurant. But they refused to listen and said it is not possible for them to break the rule for one person only” he points out.

Continues Komal, “It wasn’t as if I was asking for a favor. When I am paying the cost of the food, what difference does it make if I have it at the restaurant or get it packed for home?” But with the restaurant not heeding to the request, Komal eventually had to throw away those discount coupons.

With society having no time to listen to their simple and basic needs, this is not a new experience for either Komal or other persons with disabilities, who face such problems on a day to day basis. But, on a closer look, you may realize that whereas the general public needs to be taken to task for the way persons with disabilities are being treated in this county, the persons with disabilities themselves and the so called pioneers of the disability movement are also equally responsible for this situation. Isn’t it sad when you note that whereas the pioneers hold regular dharna, meetings with planning commission and call for boycott of elections to raise the concerns of persons with disabilities, no one has time for incidents and issues like the one that took place with Komal that has the most direct impact on the daily lives of such persons?

Again, though those working in the sector have done a lot of hard work to sensitize the government and other officials, but unless the situation changes on the ground and the common man understands the issues and the problems of persons with disabilities, the steps taken by all these so called pioneers just mean nothing.

What discourages the persons with disabilities even further is the fact that though the required facilities are not available at most places, even where they are available, they can’t be used. Citing an example of this unfortunate situation Komal says, “I recently went to PVR in Saket’s Select City Mall in New Delhi, which screens films on the first floor of the mall. We had gone there since we had come to know about some electronic chair in that mall which can lift persons with disabilities. But on reaching, we were informed that it doesn’t work at all. My repeated requests to get it started failed and I had to be physically lifted to enter the hall causing great inconvenience to me. What’s the use of installing something which doesn’t even work?”

Agreed, since accessibility is a major problem for them, people with wheelchairs and other mobility problems face greater amount of difficulties, but does it mean that the attitude of general public towards the remaining persons with disabilities is very good? No, not really. Take this shocking incident, which Sonu Bhola, a young man with polio had to suffer sometime back. It so happened that during the recent strike of Indian Oil Corporation Employees, Sonu, a residence of East Delhi, had to rush to his office early in the morning and was there the whole day. As he stepped out of his office in the evening, he was disappointed to know that though he needed petrol to reach home, the strike still continued. Further, by the time Sonu reached Andrews Ganj he found he had no petrol in his scooter tank and had to unfortunately stop at a petrol pump in Andrews Ganj only. And, since it was not an Indian Oil petrol pump, Sonu thought he would easily get petrol over there. But that was not to be. Says Sonu, “I made repeated request first to the petrol pump employees and then to manager to help me on humanitarian grounds and even if the regular quota was finished, I would be grateful if they can give me some petrol from their personal reserved quota. But despite noticing that I was disabled and couldn’t walk properly, they didn’t help. Ultimately, with all the effort that it took, I had to drag my scooter to the next petrol pump and get the petrol.”

Of course, the solution to such problems lies in raising awareness both at an individual and social level. “To deal with the situation at an individual level” says Subhash Vashishth, a lawyer, who has worked in the field of disabilities and takes up disability related cases, “You can lodge a complaint with the Chief Commissioner of disabilities, who then will take quick and swift action on your complaint. Moreover, if you are an influential person in the disability sector and can get in touch with some like-minded people to organize a peaceful protest in front of the concerned person that may also help.”

“Further” says Saurabh Kumar, a person with Polio and a self-advocate, “For a long term solution, you need to create awareness, probably with help of the media. Persons with disabilities need to work in close connection with the Media to chalk out an effective long – term campaign in this regards.”

But Ms. Shukla Haldar, a mother of a young adult child with Cerebral Palsy disagrees to advocates like Subhash Vashishth and Saurabh Kumar insisting, “You look for an answer when you are actually experiencing a problem at given point of time What to do then and there is what matters and its when I don’t find immediate solution to my son’s problems, that it hurts the most” Yes, of course madam but may be Komal has an answer, He says, “The best you can do is to regard these as bad experiences and move on hoping for batter times ahead. That’s the best we can do. Isn’t it?”
1467 WORDS
_______________________________________________________________________________________________________________________________________________________