At this moment, over a million people in India are in unimaginable pain. We refuse to look the other way. We choose to hear the cry, and to do what we can.
Please join us. Your help is needed.

Kerala’s palliative care policy revised:

2019 December 11

It is only a few months since Pallium India requested a revision of Kerala’s Palliative care policy. Thanks to the special interest taken by the honourable health minister Smt. Shailaja Teacher and the principal Secretary (health) of government of Kerala Dr Rajan Khobragade, and the able leadership of Shri S M Vijay Anand IAS, (former chief secretary of Kerala who chaired the committee), things moved fast and to coincide with Universal health coverage day, 12 December 2019, the state has a revised policy. This was done after a thorough review of the Policy document first created in 2008, analysing the gaps and including the measures to fill them.

The theme of universal health coverage day says “Keep the promise”.

Kerala government did precisely that.

Thank you, honourable health minister Smt. Shailaja Teacher and Dr Rajan Khobragade.

You can read the Kerala state palliative care policy document here; but in addition we attach, a list of major changes in the document from the 2008 policy. Thank you Ms Shriya Singh, resource mobilization manager in Pallium India for creating this list.

Here is why palliative care for humanitarian crisis is so important.

2019 December 5

Are we doing enough for migrants, refugees, people who have fled war-torn zones and for those in natural disasters?

Please read: Palliative care as a basic healthcare right: A new consensus within the humanitarian community

We’re all in this together

2019 December 3

Nincy Mariam Mondly, Pallium India’s friend and a wheelchair user, writes:

Today being the International Day of Persons with Disabilities, let us bring to light how our lives as persons with disabilities continue to be lived – NOT to the fullest. While we are, for better or worse, inevitably different from the usual crowd, our dreams and desires refuse to be caged by the limits set by our bodies.

Goals to improve the quality of lives of people like us are loaded with adjectives like ‘inclusive’, ‘integrative’, ‘equitable’ and such. But how often do you see a wheelchair-bound person in a public place? Clearly what is on paper hasn’t been put to practice.

What connects the bits that make up the whole of a common man’s life is lacking for persons with disabilities. That is to say, if the common man/woman has or can find means to connect his/her health, home, education, workplace and much more in life, it is not so for persons with disabilities. For, even if the right to education may exist, he/she may not be able to pursue it because there is no affordable and available means of regular public transport. As for job opportunities, to go beyond ‘making a living’ to ‘loving your work’ seems more utopian for people like us than everyone else. The same walls that confine us can often comfort us a bit too much that we lose the courage to fight for the rights that remain in books.

And if we were to strive for the implementation of these rights, who would lead us? Because we are unable even to reach out to each other, let alone to the general public.

All of us, labelled either ‘well-abled’ or ‘disabled’, partake in the sunlight that falls over us and the air that we breathe. If a flood comes to kill, it can kill us all. We together form this society and if we were to join hands to uplift each other, it would be just like holding tight the baton and running the best race we can. For the relay we are, is best played together.

3-day Training on End of Life Nursing – Pediatrics

2019 December 3

Cipla Palliative Care and Training Centre is organizing a three-day certificate training program for nurses.

Venue: Bai Jerbai Wadia Hospital for Children, Parel, Mumbai

Date: 6, 7 & 8 January 2020

Click here to register for the program

Contact

Dr Veronique Dinand – 9971839244 | Brother Ashish Telgote – 9870623954 | Sister Poonam Subhedar – 9833548056

‘We have to come forward and fight for our rights’

2019 November 30

Miby Miriam Jacob, intern at National Institute of Speech and Hearing (NISH) and a hearing impaired person, writes:

It is an unsaid truth that disabled women share the pain of double marginalisation – of being female and disabled at the same time. They have been denied opportunities throughout history. It is sad that some people do not see the disabled as persons with their own identities. But women are now gaining the power and confidence they lacked in the past. It is high time that we broadened our world views and realised that each one of us is unique. Being different is special. Rather than a disability, it is a different way of life.

The workshop “Workshop on Empowering Women with Disabilities” organised by Pallium India in collaboration with Women’s Institute on Leadership and Disability (WILD) on 23 November 2019 at Govt. Women’s College Trivandrum, was a platform to discuss the contemporary attitudes towards communities of disabled people in general and disabled women in particular. It was an opportunity to meet new people and understand each other beyond language barriers. Seeing sign language interpreters translating speech into Indian Sign Language for the deaf was a new experience to the majority of people who attended.

There were 20 women with different kinds of disabilities as participants, who shared what all difficulties they face in their everyday lives. Deaf and Hard of Hearing women expressed how the absence of subtitles in movies takes away their access to them. Similarly, railway announcements regarding cancellations of trains and re-scheduled times are not shown in visual formats that are accessible to the Deaf. It is also important to encourage sign language in deaf schools, since a lot of students complain that following an oral approach in Deaf education delays their language development. They also highlighted the need to have sign language interpreters in government offices and other institutions, so that the Deaf can have accessibility. There are many who consider Deaf as dumb and mentally unstable, and families that deny them from living independently. Women in wheelchair shared the difficulty of not having barrier-free ramps, disabled-friendly public transportation services and accessible toilet. Due to the barrier in accessibility to doctor’s offices and clinics, people with disabilities are less likely to have proper health care and medical assistance than others. The high unemployment rates regardless of educational qualifications were also another problem they raised. Some even shared the pain of body shaming. Their real experiences proved that the hardship disabled women face in the modern times is not negligible.

It is necessary to provide women with disabilities a space of their own by empowering them and bringing them to the mainstream, and by creating access to equal opportunities and civil rights. They need to be prioritised with leadership positions held by them. But the lack of knowledge and awareness makes it harder for them to realise what all rights are entitled to them. Adv. Sandhya J’s session on disability rights was a thought-provoking experience for everyone. Out of the 7 lacs disabled people in Kerala, 3 lacs are women. We would never get the rights done unless we come forward in groups and fight for it. There are acts and policies to ensure that women and children do not face any social, domestic or sexual harassment. But the laws that are meant for the equal rights and protection of the disabled are not available when we need them the most. Adv. Sandhya made it clear that any discrimination regarding gender, race or class in one’s own family or in workplace in the name of disability is legally punishable. She provided new information on the programmes and schemes of the government for persons with disabilities, such as reservation, concessions etc. as well as on what to do and whom to call and complain in case of any need. This discussion on the Rights of Persons with Disabilities (RPWD) act and women’s rights couldn’t be any better!

The awareness class on sexual and reproductive health by Dr. Shaliya James was an eye-opening one. It is when children are not given proper sex education from parents, caregivers and formal school systems that they seek the help of friends and media. Lack of timely information often leads to so much fear and prejudice that the person finally turns to wrong information and assumptions. Being in a country where discussing sexual matters is considered a taboo, many, especially people with disabilities, are deprived of the basic sexual knowledge. This informative session rewrote the social conflicts that surround sexual health education and pointed out to the need to have proper sex education at home, schools and public health campaigns for disabled women communities.
The participants were asked to share about their own lives, abilities, hobbies and ambitions. There was also an opportunity for them to showcase their skills. One of them read out some poems from her poetry collection about her own life experiences. It was refreshing and the audience was enchanted. Challenges and physical limitations do not stop anyone from expressing themselves.

The attitudinal barriers, barriers to communication and accessibility, inferior treatment, spreading stereotypes, making unfair comparisons etc are only a few of the difficulties the disabled groups face in their day-to-day lives. They do not want sympathy and charity, so stop being patronising. As tax-payers in a democratic nation, they have the equal right to earn their own way and live independently. Appreciate their hard work and provide them with equal opportunities and equal access to their rights. Their talents, gifts, merits and contributions need to be recognised. Lack of understanding and awareness often cause people to make assumptions and perceptions, and to judge the disabled. That is why it is the need of the hour to raise social awareness among people and combat prejudices relating to individuals with disabilities. It is not about making them stronger; they are already strong. It is about changing the way the world perceives that strength.