Don't Discriminate Thalassaemia Patients, Employers Told - Thalforum

Vik · August 8th, 2005, 10:16 AM

August 07, 2005 12:39 PM / Malaysia

Don't Discriminate Thalassaemia Patients, Employers Told

KUALA LUMPUR, Aug 7 (Bernama) -- Deputy Prime Minister's wife Datin Seri Rosmah Mansor Sunday advised employers, both in the public and private sectors, to provide equal chances in employment to thalassaemia patients or those with inherited blood disorders.

She said these people should be looked upon as normal human beings and be given fair and equal opportunities.

"With help and support (medication), they can work as a normal person. Please do not discriminate them," she told reporters after flagging off the "Batik Charity Walk" at Kuala Lumpur City Centre (KLCC) Park.

The walk, participated by 300 participants, including 100 thalassaemia patients, raised about RM20,000 for the Thalassaemia Association of Malaysia, a non-governmental organisation responsible for creating awareness about blood disorders and the need for population screening for carriers among them.

The walk organised by the association was to raise funds for medicines and medical equipment for needy thalassaemia patients.

-- BERNAMA

URL: http://www.bernama.com.my/bernama/v3/news.php?id=148874

vamanjani · August 8th, 2005, 08:23 PM

Hello all,
Very pleased to read that a Dy. Prime Ministers wife participated in a charity walk, raised funds for thalassaemics and made a statement to provide equal opportunity to thalassaemics in employment. Hats off.
We find in most of the developed countries that people shrug even to disclose to their friends or fiance that he or she is thalassaemics, such public statements made by so called city fathers and politicians or by such of those in Government of various countries will make a lot of difference and thal community will be accepted as a normal human being and not untouchable.
I wish and pray that leaders of various countries in the world and the others will come forward to help and assit Thalassaemics to mend and prosper their career by providing equal opportunity.
Vaman Jani

vikaskapoor · October 7th, 2005, 02:26 PM

yes sir,
i totally agree to you that our leaders r not that wise enough to think in practicle way.
but you know i will tell you an example
on thursday, october 6th , 2005 , i mean yesterday . Dr.Ratna Chahtergee from a senior lecturer and doctor at ulc london, she is very famous endocronologist , had a check up camp and a talk in sir ganga ram hospital ,new delhi (india) organised by thalassemics india. she checked around 50 patients and in the end gave a talk on Assesment and management of endocronopathis in thalassemia.
the talk was scheduled from 4pm to 6pm . but there was a strange thing happened there as she was giving her lecture to all the thals and patients . a question was asked by a thal patient aged around 26 yrs . this girl was not very well managed thal so its very obvious that she has a clear symptom of thalassemia and any one can figure out the diff between normal girl and her , she asked that how can i gain some hieght and some weight to improve my condition , so that i am not refused for a job once again . and all the eyes struck to her without a blink .then she told her that how a private company has refused her a job just because she is a thal , she told us that she had gone to all the government athorities and human rights commision , but nobody helped her or i can say cound'nt help her because she dont have any proof that they refused on this grounds.
well in a way this is a right that how can we eastablish the truth as they were v cleaver that they didnt gv it anythng in writting.

and the sad part of that discussion was it as ended without any conclusion , there were so many influential ppl sitting there but all seemed to be helpless and went out with moist eyes that all the power they have and resourses they have cant help that girl who was almost crying that she is without a job.......

so sir as u have written that we have to talk to official of govt ,
you know i talked to mrs shobha tuli about it and she said that we are on this topic from many many years and these govts think they have lot many things imp than this ..so i think in all developing countries we have a v v v v long battel to be fought and the sad part is we dont have any weapon to fight this endless battel so lets leave it to god ...

regards
vikas kapoor

Vik · October 8th, 2005, 11:37 PM

Quote:

Originally Posted by vikaskapoor

battel to be fought and the sad part is we dont have any weapon to fight this endless battel so lets leave it to god ...

The only thing that governments can do to help us is to ENFORCE labour laws with respect to people with disabilities so that companies are scared to deny employment to ppl with special needs or fire people that need time off due to medical reasons.

vikaskapoor · October 9th, 2005, 03:48 AM

Quote:

Originally Posted by Vik

The only thing that governments can do to help us is to ENFORCE labour laws with respect to people with disabilities so that companies are scared to deny employment to ppl with special needs or fire people that need time off due to medical reasons.

sir ji ,
i agreee with you that there should be a labour laws but i dont think you are aware that there is a labour law in india .
but i dont agree with you that we should be given a title diasable
do you think that just for a job ppl should call us disable when we know that we are far better and work more than a so called normal ppl.

but ya we can approach govt officials for solution of this kinda probs but everyone here knows that how government works ......

thats why i said lets leave it to god.......

regards
vikas kapoor

Vik · October 9th, 2005, 09:01 AM

Vikas, I know there are labour laws in India but the question is ARE THEY IMPLEMENTED and ENFORCED??

Does govt. take active part in making sure ppl are not fired without reasons or on baseless grounds? etc.. etc..

So when I talk about laws, I talk about enforcing those labour laws.

As for the disability issue, I have a different viewpoint. I believe that we are normal but still thalassemia affects our life in a major way. We spend so much money on our health and so much time looking after it. To assist Thalassemia community sometimes governments give out some benefits and special assistance.

There is NO harm is taking that benefit and special assistance from the government. In Canada, thalassemia patients get disability tax credit, which is a tax rebate. Thals fill up a disability form to get that tax rebate because after all, that rebate allows me to compensate for the money I spend on parking, gas(petrol), time, missed day from work, food etc. during my doctor's appointment.

One has to look at the other side of the picture....that's all I am saying.

Vikram

vikaskapoor · October 9th, 2005, 10:57 AM

Quote:

Originally Posted by Vik

Vikas, I know there are labour laws in India but the question is ARE THEY IMPLEMENTED and ENFORCED??

ya i agree with you on this point , in india we have problem in enforcing these kinda laws .. you know money works in these kinda areas.

Quote:

Originally Posted by Vik

As for the disability issue, I have a different viewpoint. I believe that we are normal but still thalassemia affects our life in a major way. We spend so much money on our health and so much time looking after it. To assist Thalassemia community sometimes governments give out some benefits and special assistance.

dear there is lot of diff between getting benifited and getting a label that you are disable , even though you are living normal life you still will be reminded that heeeyyy you are a disable ...do how much you can do , work as hard you can ,,, you are not handicapped ., you are not blind ,, you can hear and speak properly ......but you are a disable ...

i will make a poll here and vik you will see i am right or not....

vik i want you to make a poll for this and now i really wanna know what all thals want a status of disable or normal

Quote:

Originally Posted by Vik

There is NO harm is taking that benefit and special assistance from the government. In Canada, thalassemia patients get disability tax credit, which is a tax rebate. Thals fill up a disability form to get that tax rebate because after all, that rebate allows me to compensate for the money I spend on parking, gas(petrol), time, missed day from work, food etc. during my doctor's appointment.

well vik paaji i must tell you we also get rebate in tax for thalassemics , i know most of ppl dont know abt it but we get it , if thal is below 18 than thier parenst will get rebate and if thals are earning then they will get the reduction. this rule applies all over india .

regards
vikas kapoor

Vik · October 11th, 2005, 06:24 PM

Vikas, do not get carried away by the word "disable".

I am not saying its ok to be called a 'disabled person'. Nobody wants to be called a disabled. All I am trying to say is that thalassemia is a chronic illness and it takes major life-compromises to maintain a good health.

In such a senario, it would be a good thing if thals can benefit if they are part of a category where certain seats are reserved for them in the colleges, universities and jobs...etc.

Many thals MAYBE very smart but cannot afford higher education OR HUGE donations, because most of their money is spent on Thalassemia and desferal. Where is the harm in that case to be able to get admission in a college under the umbrella of reserved seats. Likewise for work.

I know for sure... no one here wants to be called a disabled person. Not you and not me... but then what does one do if one person is not able to compete in a healthy way due to their health.

Vikram

Prince · October 12th, 2005, 12:49 AM

Hey Friends

You guyz are disscussing very important topic, but Vik & Vikas, I have found people to be quite ok with the fact that i am thal in regards to JOBS........

Now i had been working for almost 3 yrs and have not found people diffrenciating................

I got the initial oppertunities at a very basic level and then have proved my worth to my organization to get the responsibility.

So guyz why to blame the world

Smile
Prince

Pranav · October 12th, 2005, 01:06 PM

hi all

I went to attend Pune conference , there was quite a discousion on it that we are diabled or not. One girl on her presentation said so,after that half of us were up some for it & some against it.
At the end there could b no conclusion. I believe we are not in the categary of diabled as govt. also doesn't fully agree it. Do we recieve the benifits that others do? Answer is no. then simply why we are simply labled as disabled. Here in India we are not givin addmissiom/jobs on bassis of we beign a thal.Instead people do give jobs easily if they tell them that they are thals.

I was quite busy in last couple of days & coul'nd mail in here. sorry for that

Regards
Pranav

Vik · October 12th, 2005, 07:11 PM

- Many of us have different health senarios.

- While some of us may be doing well with our health, others are not doing all that well.

- Many of us are able to juggle our commitments like family, Thal, friends, work, desferal, etc successfully while some are not able to set a balance.

- Sometimes our health maybe on top while everything is working out fine, with no problems in managing job, health and family while other times we may have probs and in some cases even hospitalised for days or weeks.

- Some people have employers who understand the individuals needs and try to accomodate your GOOD days as well as BAD days. While some employers just drive their employees to get the maximum out of them and totally overlooking and individual's personal life and issues with his or her health.

- Not everyone here is in a same situation and things keep changing.

In such a situtation is it worth to be categorized as DISABLED and be given all the privilages such as rebate in income tax, special reservations in jobs and education, priority access to certain things in life.
OR
Is it ok to continue struggling or working or competing in the same open field like the rest of the people and not be put in any category. The bottom line is that most of us do not want to be put under a category and branded.

it's something we can always debate on.. ... and so it continues.

vikaskapoor · October 13th, 2005, 02:59 PM

hi guys,

Quote:

Originally Posted by Vik

Vikas, do not get carried away by the word "disable".
I know for sure... no one here wants to be called a disabled person. Not you and not me... but then what does one do if one person is not able to compete in a healthy way due to their health.

i know you are right but still i am not the one who will let anybody call me disable .if i am worth a job i will get it if i am not able to keep up or my health is shacky in a anyway , thn sorry to say i dont deserve that job. well just to have a job that i dont deserve u think we have a label "disable"

Quote:

Originally Posted by pranav

Here in India we are not givin addmissiom/jobs on bassis of we beign a thal.Instead people do give jobs easily if they tell them that they are thals.

what happened to you pranav , are you actually living in this country..
i think you were not there in that talk bt dr.ratna chatterjee , where that girl told that she was not hired when employeers got to know that she wa thal. and it was not her only i personally know many of thals who are not given jobs just b coz they are thal , but we have positive examples also , iwas one of them , neeti , payal etc .

Quote:

Originally Posted by Vik

In such a situtation is it worth to be categorized as DISABLED and be given all the privilages such as rebate in income tax, special reservations in jobs and education, priority access to certain things in life.

OR

Is it ok to continue struggling or working or competing in the same open field like the rest of the people and not be put in any category. The bottom line is that most of us do not want to be put under a category and branded.

ya mann , life is a struggle and we have to fight ,,, there is no need to hide behind a word disable , it will make your situation even worse and belive me it will..
vik i am sure at the end of this debate we will be having same opinions.

regards
vikas kapoor

Pranav · October 13th, 2005, 03:22 PM

Hi Vikas

Well thats what I was saying in my previous mail that you are telling, perhaps you misunderstood me . I meant that many of us have been refused jobs because we are thals but we are not disabled ,as they call us ,we can get jobs on our merit. I too had an opportunity to work in a call center.
"I believe we are not in the categary of diabled as govt also agree with it" by this i meant that govt also understands that we are as capable as any other person.

Regards
Pranav

Ralf · October 15th, 2005, 01:58 AM

hi guys its getting hot in here.....so we are dicussing thals and jobs....so ....i am a thal major i am 18 i am too working in a call center. i got job on my merit. i did not have to put any of influence or show my thalassemia card to get the job. so a thal can get job . i have said before and i am going to say it again "THALASSEMICS ARE NOT DISABLES"

ralf

Pallavi Singh · November 27th, 2005, 05:42 AM

This is indeed a very serious issue. Being an Indian, I can express my views in the Indian context.

I feel that it wouldnt do any good by labelling thal majors as "Disabled" in the Indian context for various reasons: Govt. doesnt have expertise to understand the level of disability involved in thal majors, it doesnt have resources which it can demarcate for thal majors, it has other serious social and health problems to address (we are still fighting against polio, social problems like female infanticide, dowry etc.), etc.

Even if the govt. is presurrized to do something for thal majors, it would simply try to get rid of the prob by categorizing us as "Handicaps or Disabled", i believe that they already have some reservations or privileges for "Handicaps". they will not make any efforts to understand the prob., special needs of thal patients. Once such a classification is done, thal majors wouldnt have anything to gain, except few reservations in govt. jobs or colleges. And this may also give an additional excuse to private companies to refuse jobs to thal majors as we ourselves are calling us as "Disabled".

So, according to me, Govt. doesnt have anything to offer us and neither would it be interested in spending any time, money or efforts for us as it has several other probs. to address for which it is facing international pressure from WHO, WTO etc.

Our solution is in our own hands. Our organizations like Thal India have experience and expertise to understand our probs. there cant be one universal solution which can help all of us. we need to look for organizational support, as is happening in case of all the social and heath probs these days. blinds fight for rights of blinds as an organization, similarly the cancer patients and aid patients. so why cant we be a strong and united organization which not only provides filters and pumps to patients but also provides support when it comes to facing probs with an employer or in school or colleges.

We all know that we can persue our professional goals even being a thal major patient. i have ben doing that for last five years. what we need is a certain level of understanding from our employer so that we can manage our health for a better tommorrow. we are not asking for lot, we just want the society to understand us and accomodate us and give us a chance to prove ourselves. you can take my example, if my boss can accomodate me, why cant other employers be the same. i think that we sometimes underestimate a person and if we try to explain he or she may come out to be a nice human being and understand your prob. private organizations these days are quite employee friendly and they need ppl who can be assets and they dont care if they have to make some adjustments to accomodate a person whom they feel can be an asset for the organization.

What our organizations (thal india, etc) need to do is not to approach the govt. but approach the private employers and write them letters through doctors etc.(if need be) explaining them abt thal patients. this will lead to awareness and employers would be comfortable in hiring thal patients. if required, examples can be given of individuals who are sucessful and also of employers who have hired thal employees and are satisfied with their performance.

such solutions can be worked out looking at an individual thal patients prob and extent of its prob.

so guys, lets be more proactive ourselves than expecting anything from our so called welfare state govt.

Cheers..