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Submitted by PatientsEngage on 6 February 2016

The proposed Rights of Persons with Disabilities Bill smacks of hypocrisy and lip service. Should it be shown the door? An impassioned plea by the Multiple Sclerosis Society of India - Chennai Chapter

INDIA MS DAY - 7th FEB 2016

India MS Day is on the First Sunday of February. This year we observe the 1st India MS Day which is on February 7, 2016. This is to raise awareness of Multiple Sclerosis in India. India MS Day is being highlighted by the colour RED. It also coincides with the World Wide Campaign “Kiss Goodbye to MS” which is being done world over between January  14, 2016 to February 14, 2016 to fund research to end MS.

India is in the process of making a new law for persons with disabilities since 2010. The draft submitted by the working committee for the same referred to 19 disabilities in which Multiple Sclerosis is included. Later the Rights of Persons with Disabilities Bill 2014 was referred to the Parliamentary Standing Committee to be made fully non discriminatory in line with UNCRPD. The Standing Committee submitted a comparatively fair report to the Ministry of Social Justice and Empowerment. Whereas the Government of India has asked a Group of Ministers (GoM) to review and discuss the Bill. According to a news agency, GoM may drop the Disability Commissions and degenerating health disabilities like Multiple Sclerosis, Muscular Dystrophy, Hemophilia etc from the Bill.
 
We in India – with Bid / Kiss Goodbye to MS are highlighting to the Government of India and the Group of Ministers who discuss the Rights of Persons with Disabilities Bill 2014 not to exclude health disabilities from the ambit of the upcoming law but to recognise Multiple Sclerosis as a Multiple Disability.

If you agree with our plea, please comment below and share with your friends.

1. How do we bid good bye to multiple sclerosis, when our own Government doesn't stand by us and support us.

2. Let not group of ministers (GoM) discussion on Rights of Persons with Disabilities Bill; Reduce our recognition as persons with disabilities to NIL! 
We want to kiss good bye to Multiple Sclerosis!!

3. Is discussion of GoM leading to Inclusion & Empowerment? Or Exclusion & Discrimination? to persons belonging to most marginalized disabilities - like Multiple Sclerosis.

4. Society demands to prove Ability! Government asks to prove Disability!
How do I bid goodbye to my Multiple Disability?

5. What is my position in this land of Democracy? Does my citizenship hold Equal Value & Dignity?
How do I bid goodbye to my Disability?

6. Symptoms are large; Stigma is huge! 
Yet we want to bid goodbye to Multiple Sclerosis;

GoM please try to understand us.

7. We want to be Independent, 
And Be part of Country's Development; 
We look forward to Government's Encouragement,
To kiss goodbye to this dreary condition! 

 8. Health disabilities ARE also Disabilities; Do not Exclude us from upcoming Law for Persons with Disabilities! 
Be with us, hold our hands, and support us to say goodbye to MS.

9. Follow Standing Committee's Recommendation, And Objectives of UN Convention; Ensure People's Participation! Enable us to bid goodbye to Multiple Sclerosis!!

10. Let the 2014 Bill of RPD, be in lines with CRPD;
Together let's say goodbye to Multiple Sclerosis.

11. With the support of GoM & GOI,
Let us together bid MS goodbye!

 

Multiple Sclerosis (MS) is a disease of the Central Nervous System, affecting its functioning unexpectedly and repeatedly , resulting in devastating disabilities in young people in the prime of their lives. 

Symptoms of Multiple Sclerosis range from minor visual disturbance to total paralysis. The simplest everyday tasks can no longer be efficiently performed by an MS person. There is no known CAUSE or CURE for Multiple Sclerosis (MS). MS is usually diagnosed between the ages of 25 and 31 and lasts a lifetime. It is known as a “Crippler of the Young Adult”. MS symptoms vary from person and to person. This makes life with MS unpredictable. Medicines only stem the progression of the disease. Treatments and services are improving for people with MS, but not for everyone, everywhere. The costs of treatment is prohibitive. 

If you want to understand life of a person with Multiple Sclerosis, read about Smitha.  

India MS Day meet 
Date: 7th February 2016
Time: 10.00 am - 10.45 am
Venue: Multiple Sclerosis Society of India, Chennai  Chapter,
C/o BOSCH “Sunnyside”, 
No.8/17, Shafee Mohammed Road, 

2nd Floor, Middle Wing, 
Next to Apollo Children’s Hospital.
Chennai – 600 006.      

For further details please feel free to contact me @ 9962100256.

Looking forward to your support to the cause

Thanking you

With best wishes
 
Mrs. Ann Gonsalvez
Honorary Chair Person
Multiple Sclerosis Society of India – Chennai Chapter

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