Addressing Stigma
Hello everyone, So grateful to be here and I cannot thank Federation enough for having this conversation today and for the Vision of community conference.
I hope you learn some, connect more and find strength and make this world a better place for the next generation.
My name is Jaya Pandey and I am here today as an immigrant and brown woman and a human being, community builder and a mom.
I am honored to share the space with these wonderful panelists.
Whatever I say today is my view, my opinion, I don’t claim to represent any specific group or community. My experiences come from my life and 100s of moms I interact with but they are my interpretation and my understanding of their situation. I might be wrong and I tell you how many times I wish I should be wrong. At the same time I would like to thank each one of them for sharing their life stories and opinions with me. Please know you all make me the woman I am here today.
We are here today to talk about Stigma - What is stigma - a mark of disgrace associated with a particular circumstance, quality, or person.
But if you are from India - Stigma is “Log kya kahenge - What people will say “ because that's what drives the society
-How can you address something if it is ingrained in your day today life like breathing and our DNA, Stigma is everywhere but mostly in our attitude.We care for others more than our own family and wont even admit.
We need to bring some basic changes and be able to talk about difficult topics, we need to stop glorifying parenting and
It would be helpful if doctors/ providers/ therapist/teachers are curious about how parents are coping with the diagnosis and educate themselves about the cultural differences that might exist between the provider/ teachers and the family to provide culturally appropriate care.
You have heard two esteemed speakers talk about their view. I grew up in India and as of today, have spent half of my life outside India. So I am a mix of Indian- asian, Brown, immigrant woman from a model minority and a mom of a child with special needs, a community builder and an activist sometime. So I think my experience is a little different in some ways.
In general we live in a academically obsessed performance oriented
society, top grades, ivy league colleges and 6 figure salary to start with is a key to success. How well we and then our children do that defines our success. Children are reflection of their parents so its hard for us to accept our vision for our child can be different and that crushes the parents. That forces us to have unrealistic expectations from the child to do ‘normal’ things which are extremely challenging or flat out impossible.
Religion is such an integral part of being Indian,
I let my values, spirituality and belief system guide me with everyday life. But In India religion dictates your life, Karma and reincarnation is the best used logic and sometimes it is used as a coping mechanism I think.
So disability brings shame, complete flat out denial, and disengagement.
Religion might bring another aspect - Parents and grandparents might turn to temple, Gurus, pandits and prayers, hoping doing some more of religion chanting, pilgrimage will somehow cure the disability. Culture and religion both has its own hold on people whether it’s direct or indirect, A mom shared with me -when the kid got diagnosed with Autism , first thing the grandparents did was show his horoscope to priest, rushed to many temples, donated tons of money
This whole scenario brings another layer of loneliness
The educated lot In India or abroad might be a little bit more willing to learn about disabilty and its impact on their children/ young adults through their lives. The vast majority in the country may not be as willing. As a result, families in the United States may not be able to share with their extended families the diagnosis, the implications on the child's education and future. This can be again very isolating for the parents.
We expect a quick cure for their medical conditions. And the fact that autism is a neurological condition that causes significant lifelong disability is difficult to digest. Many parents tend to look for answers in alternative streams of medicine, diets, and much more.
Then there is another set of complexity - the Difference in empathy and sympathy - “God only gives things to those who can handle” Or its the karma you are paying for. I fail to understand what kind of “God” or superpower believes in punishing a child for previous birth’s karma.
Families are usually reluctant to talk about medications, effects of medications, that medications are even necessary or that they consulted with a psychiatrist or a psychologist. Mental health conditions are considered to be a weakness and never discussed within families. Often this is kept as a well guarded secret. Parents worry about what others would have to say about them, their child, their family. As a result, moms/ parents are reluctant to share about this, even among friends or or in their social groups. The child is on a medication for depression, anxiety, attention, etc is a huge deal. Parents worry that this might affect their social image in the community. If a child doesn’t do something, it’s the ‘mother’s fault’ and some free advice on how the families should enforce discipline.
In some cases, the mother of the child might be implied as the cause for the disability leading to complicated family dynamics and a disruptive social environment.
What can be done, how can we move forward in the direction -
Because the learning curve is very steep, learning the system, going around for theories, doctors and then paperwork and documentation is mind boggling and most immigrant families don't have any social support available.
What can we do
Open a dialogue - family friends? If people ask - what can they do - educate them, have a list ready of support.
Self care - Down stretch yourself too think
How a supportive community can help. Education and awareness is the key.
कौन कहता है आसमाँ में सुराख़ नहीं हो सकता
एक पत्थर तो तबियत से उछालो यारों
Video recording here - My segment is after 52 mins counter
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