Diversity is not always about differences that are ‘in-your-face’!

To be liked by each other, we do not have to become ‘like’ each other.

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I have been and will be talking about human diversity a lot. In the discourse on diversity, I am focusing on disability as part of human diversity. Respect for human diversity , and recognition of disability as part of human diversity is not a new thing. We have been talking about it with great emphasis since the UN Convention on the Rights of Persons with Disabilities came in.

But based on what I have been hearing from people around me, I think it is time to challenge the myth that it is disability only when you can see it! Or that if some people really don’t look any different, they must not be considered as part of human diversity or as a person with disability.

Here are some of my thoughts:

  • Identity of a person does not change just because we do not recognise the various parts of their identities.
  • To be liked by each other, we do not have to become ‘like’ each other.
  • Majority is not necessarily the norm.
  • All of us will be able to find something that is similar when we get to know each other. But that does not mean that there are no differences.
  • That we are different from each other – this cannot be wished away just for the sake of our belief in a common code, common culture, common history, or something else.
  • In the context of similarities and differences, what does not really change is the fact that everyone has rights.
  • Disability is not just about only using wheelchair or looking so different that a person ‘must have a disability’.
  • Not looking very different does not necessarily mean that our experiences are no different from each other.
  • Our experiences do shape so much of us. It does not help to wish away the impact of experiences on people. Just because we do not know about it, it does not mean that it has not happened!

I do hope that next time we say something like….

‘You don’t look disabled’

‘You don’t look like a Muslim’

‘You don’t behave like a woman/girl’

‘You are not like other men/boys’

….we can stop ourselves and recognise the extent of diversity around us. People are not always categories that we think or see in!

Take care.

दीवान में सिमटा सब कुछ

यही शायद अब घर था । पर घर जैसा नहीं । कहाँ है रानी का घर ?

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रानी हाथ में एक बिस्कुट और दूसरे हाथ में चाय का एक गिलास लिए खिड़की से बाहर देख रही थी | शाम की ढलती धूप में सर्दी बढ़ती जा रही थी | चाय की गर्माहट इस वक़्त अच्छी लग रही थी |

दरवाज़े की तरफ पीठ किये बैठे थी तो देख नहीं पाई कि कौन आ रहा है | वैसे भी ध्यान तो खिड़की के बाहर हो रही चीज़ों पर ही था | गीता और शमा बैडमिंटन खेल रही थीं | रानी के साथ वाले कमरे में रहती थीं ये दोनों |

‘रानी ! देखो कौन आया है ? रानी ! रानी !’, नर्स ने आवाज़ दी।
रानी मुड़ी तो देखा उसकी बेटी स्वाति खड़ी है । स्वाति अपनी बेटी ऐश्वर्या के साथ आई थी। ऐश्वर्या सात साल की थी । पहली बार अपनी नानी से मिल रही थी । रानी हलके से मुस्कुरायी । स्वाति और ऐश्वर्या अंदर आए और सामने वाले खाली दीवान पर बैठ गए ।

‘कैसी हो मम्मी ?’
‘हम्म्म … बस ठीक ’

‘चाय पी रही हो ?’
‘हम्म्म ’

‘यहां पर सब ठीक है ?’
‘हाँ ’

‘आजकल तो सर्दी है ! गरम कपड़ें तुम्हारे पास हैं ना काफी ?’
‘हाँ’

रानी ने ऐश्वर्या की तरफ देखा ।

‘ऐश्वर्या है इसका नाम । सात साल की हो गयी है ! बहुत तेज़ है पढ़ाई में !’
ऐश्वर्या मुस्कुराई और नानी की तरफ देखने लगी। नानी भी मुस्कुराई।
‘बहुत सुन्दर नाम है ऐश्वर्या तो ! कौन सी क्लास में पढ़ती हो ?’
‘दूसरी में !’, ऐश्वर्या बोली ।

ऐश्वर्या बात करते करते नानी के कमरे को भी ध्यान से देख रही थी । बहुत साफ़ सुथरा कमरा था । सामान कुछ ज़्यादा नहीं था । बस एक टेबल और दो दीवान ।

‘कपड़ें कहाँ रखती हो मम्मी ?’

‘बस इस दीवान में । है ही कितना सामान ? ’

ऐश्वर्या दीवान की तरफ ध्यान से देखने लगी । ‘कितना सामान आता होगा इसमें ? इसको हर बार खोलना , कपड़ें डालना , निकालना …’ मन ही मन सोचने लगी ।

कोई आधा घंटा बैठे स्वाति और ऐश्वर्या ।

रानी फिर अकेले बैठ गयी । लोग तो थे आस पास । यही शायद अब घर था । पर घर जैसा नहीं । कहाँ है रानी का घर ? उसके और भी रिश्तेदार थे । लेकिन कोई घर ले जाने के लिए नहीं आया ।
‘आओ , हमारे साथ चलो । अब साथ ही रहेंगे !’, ऐसा किसी ने नहीं कहा ।

मानसिक रोग के इलाज के लिए आयी थी रानी यहां । जाने कितने साल बीत गए । अब भी यहीं है । जाने और कितने साल ……

………to be continued…

Some bits about women like Rani: People with mental illness continue to face stigma and exclusion . Seeking treatment for mental illness remains a challenge for people due to various factors. There have been some efforts to ensure that people with mental illness live within their families and communities. But many people in society continue to fear people with mental illness instead of finding ways to be with them and support them. This has to change.

You can read more here and here . It would be great if you could search for more information on situation of people with mental illness in your state/area and see what needs to change!

The Real Cost of a Disability Certificate

After several visits to the hospital for fulfilling the process for a disability certificate,

After two previous cancellations of the medical board (that takes decisions regarding disability certificate) at the hospital,

After meeting the doctors with so much fear (because of his experiences of being in multiple surgeries),

Ginni got his disability certificate!

The application process for disability certificate is without any fee. But are the costs of this process really zero? This can be better understood by knowing what went on for three years old Ginni and other children at a hospital in Delhi.

Among four children who appeared in front of the medical board on this day, Ginni was the only child who managed to get the disability certificate on the same day. The rest of the children will get it too but after more running around and fulfilling the gaps in their documentation.

The experience: Real vs expected

While Rights of Persons with Disabilities Act, 2016 and its notified rules in 2017 are a step forward, accessing entitlements such as a disability certificate remains a challenging process for several children and families.  On reading the rules* in Delhi (and across India) it may seem that one can go and just submit the application to designated Hospital or competent authority. But the process is not such a simple one. In Delhi, you have to submit proof of being seen by the doctors within the hospital where the disability certificate has been applied.

Ginny, born with congenital anomalies, had been undergoing treatment with diverse conditions with different doctors at private hospitals. He was eligible for a disability certificate for only one of his conditions. However, in order to cover all his he had to go into OPDs of four different departments in the Hospital where his application was to be submitted. This took four days because the lines were long and by the time he managed to see his doctor, there would be no time left to visit another OPD. The application was filled and submitted in another building after a doctor wrote that Ginni should be referred to the medical board for a disability certificate. A photocopy of the all documents from this hospital was included with the application along with photographs, residence proof, and a copy of birth certificate. It was only now that Ginni was somewhere in the process of disability certification.

After weeks of wait and follow up, there was a phone call informing that the medical board sitting for Ginni was fixed in the first week of April. But on the designated day it got cancelled, as a doctor was not available. The fixing and cancellation happened again in the same month. It was the third time when Ginni was called for the medical board sitting at the end of April. This was the day when he got his disability certificate.

The doctors examined Ginni to assess his impairment and the percentage for the same. Ginni cried and looked scared (probably due to his past experiences from surgeries). The room, where the medical board sat, had nothing that would look familiar or interesting for a child.

In addition to this, much had already happened before he and other children met the polite doctors for his assessment in the medical board sitting. In order to access services in this hospital, people would come and stand in long queues even before the OPD registration counter opens. There were several steps and tests, long lines, long waits without access to clean drinking water or clean toilets or food, unless the families had planned for the long day in advance and carry much along.  The spaces within the hospital were without aids necessary for accessibility or comfort. Families who had come with their children for the medical board sitting were carrying their child all the way everywhere while they should have been given wheelchairs. They waited for at least an hour on footpath outside the medical records department (MRD) for the representative to complete files and take them to the location where medical board would be sitting. This place had no toilet nearby and drinking water facility for service users.  The temperature that day was touching 43 degrees Celsius. A child was getting restless and wanted to move around. Eventually, at the designated time, the families and children with disabilities were taken to a room in another building where they waited for their turn.

While the doctors in the medical board saw each child and their reports, the discussion and decision making among doctors and finalization of the certification was done in absence of families and children with disabilities. For the waiting families and children, it was nothing less than an anxious wait for a verdict by a judge in the courts of India. One of the families was informed that they needed to get the child to undergo another test before the process moved further. This information was given to them by the representative from the MRD who was the contact person for everyone who had applied for a disability certificate. However, the doctors were better positioned for explaining medical test or other medical requirements to the families. This did not happen probably because such protocols are not mentioned in the guidelines.

The guidelines for assessment of disability are purely medical.  Since these guidelines are linked with the Rights of Persons with Disabilities Act, 2016 and related rules notified in 2017, we may assume that the principles that guide the legislation would guide everyone and every process associated with rights and entitlements of persons with disabilities. But this is not so. While different parts of the system work according to the role specified for them, the overarching principles tend to be forgotten. Not only this, the system and processes also fail to become child- friendly for children with disabilities. Additionally, let us not forget the number of days that families spend at hospitals running around and loosing their daily wages. This is not fair considering that they are already starting behind in the journey.

Nuances need to change further

Overall costs, whether physical, monetary, or emotional are huge for families and children with disabilities. Even when the interactive human parts of the system (i.e. the guards, the staff at counters, the doctors, the other service users, and so on) may be patient and polite, the processes and overall system seems to push families and children with disabilities to become passive participants as they go through numerous hassles. What is rightfully theirs and should be available as a consumer of services is not accessible in a complete and compassionate sense.  Nuances of the functioning of a medical board as well as the whole process of certification of children have to be understood and addressed through the lens of following questions:

  • ‘What would be alternative processes and steps in lieu of delays and cancellations of the medical board sittings?’
  • ‘What would make the process more rights based for children with disabilities and their families?’
  • ‘How does the sum of different parts of the system form a larger whole?’

Present, obviously, must change further.


*Notification of Right of Persons with Disabilities Rules, 2017: http://www.disabilityaffairs.gov.in/content/viewpage/right-of-persons-with-disabilities-rules–2017.php Rules for Delhi were notified on 28 December 2018.

Remembering Prof. Ratna Verma on the World Social Work Day!

‘She knew she was different! She guarded her profession fiercely!’

Prof. Ratna Verma passed away on 1 January 2019. On 16th February 2019, some of her friends, colleagues, students as well as contributors of her book Manan came together. Through conversations, they remembered her as a colleague, as a friend, as a guide, and as a social worker who remained fiercely protective, promotive, and possessive of her profession.  It is through these conversations that I got to know Prof. Verma.

All I knew earlier was that Prof. Ratna Verma had been a faculty at Department of Social Work , University of Delhi. I had never met or talked to her. My only connection with her in past had been through her book on psychiatric social work since I am from mental health domain as well. Yet it was sort of a miracle that I got a chance to contribute to her book Manan and write about my journey and learnings as a social work professional. In this post, I write about Prof. Ratna Verma based on what I learnt from those who knew her well.

As everyone talked about their experiences and interactions with Prof. Verma, they shared examples of her independent and determined nature as she would move towards achieving her goals through ‘Sankalp’ ! A born counselor’ as well as an authoritarian and a strict supervisor, she remained supportive of her students, encouraging them to stay with the social work profession. Prof. Ratna Verma influenced lives and got people to remain connected with social work.

Talking about Prof. Verma as a unique person with a lot of energy, members shared their awe about the fact that in spite of her health challenges, Prof. Ratna Verma shifted houses and stayed on her own. Many considered her to be a role model for the way they should stay independently as they grow old.

Her friends and colleagues remembered her as someone ‘who lived life to the full’ as she continued to ‘enrich’ people. ‘Brave’, ‘Courageous’, ‘Straightforward’, ‘Ethical’, and ‘Not cunning’ were some of the other expressions for her. Referring to her persistence as her ‘demanding’ nature, Prof. Verma was seen a leader who had vision for her work. It was therefore not surprising that she made persistent efforts in following up with various potential contributors for her book- Manan that was completed and published recently, just before she passed away.

Encouraging and offering much needed ‘pat on the back’ to co-professionals, enthusiastic and a humble person who did not follow hierarchies- was Prof. Ratna Verma. She was a complete host whose ‘poha and kahwa’ will always be fondly remembered by those who knew her and visited her.

Today is World Social Work Day! And what better day to remember Prof Ratna Verma than the day on which social workers of the world stand together to acknowledge and celebrate achievements of social work profession as well as those who contribute in various ways to strengthen this profession further!

If you would like to read Prof. Ratna Verma’s last work Manan- Reflections on Social Work Education and Practice, you can find it here. It is based on experiences and learnings of some social workers in India.

Again!

This will be the fifth one!

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A surgery is coming up, again.

The hospital admission will take place, again.

This will be the fifth one!

Fifth one, when he would go under general anesthesia.

Fifth one, when he would have to remain hungry for several hours before going into surgery…

Feeling hungry, tired, and thirsty.

Fifth one, from which he will come back with a lot of pain.

Fifth one, when we would let him go alone with people he does not live with (his doctors).

Fifth one, when we would wait for hours to be called to the recovery room.

Fifth one, when I would hold him when he is crying and disoriented.

Fifth one, when I would hope that he feels better soon…

…But knowing that it’s not in my control.

Fifth one, when he is unaware how ….

….. so much of his pain and helplessness gets transferred to his parents.

And yet,

This is the first surgery when he has turned three!

First one, after he has already played ‘Doctor’ several times…

…Checking all of us with his stethoscope and ‘light torch’!

First one, after he is no more afraid of doctors.

First one, since he has started reminding himself loudly….

… How he won’t be afraid of certain things (e.g. balloon, dogs, sounds)!

First one, which has come after so many steps and hospital-visits….

…. And which is going to be followed by many more steps and hospital visits. 

And yet,

I cannot claim that I know what he goes through…

…. When he watches us send him for all these surgeries!

When he watches himself in pain while we are fine.

What he has endured is his journey.

And all we can hope for is a bright future.

A future with lots of love, fun, and safety!

(Sending love and wishes to all children enduring pain and discomfort; and to all parents who are going through much to see a better future for their children!)

A rock, a stonecutter, and each of us with a geode!

green teal and black ornament
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“When nothing seems to help, I go and look at a stonecutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred and first blow it will split in two, and I know it was not that last blow that did it, but all that had gone before.”  ― Jacob A. Riis

I heard this from someone in an event and it sounded so meaningful! It affirms that if you persist, change will come one day. And it is not the last thing that we do that would have caused the change. It would have been all those things that we must have been doing for several weeks, months and years. 

It is strange and yet not so strange that sometimes, when we face an obstacle, it occurs to us, ‘Oh! I can deal with this! It is as if I have been preparing for this all these years!’ And often such preparation would have taken place through many of our experiences that have gone by, many people that we must have met, many things that we must have heard, many things that must have just fallen into place when we needed them to! 

It is not about destiny. It is just that maybe, or definitely everything that we have experienced has contributed to something, steered us in some direction to take a series of decisions that have brought us where we are (which also means that different decisions could have taken us somewhere else!). And this journey is still going on. We have reached few places. But there are more places that we have to cover!

All the places and all the people that we have crossed in our journey, all the experiences that we have gathered in this journey, help us when we need clarity in face of confusions. Nobody is saying that this journey will always be pleasant! It is often the mix of pleasant and unpleasant things that contribute to our clarity on our priorities and decisions about our way forward! Even if I may not have always known what I want, I generally know what is it that I do not want!

So lets continue hammering the rock, and one day it will crack! And who knows? Maybe it is a geode… and we will find beautiful crystals inside!  

Through the ‘Daughters of Destiny’

Daughters of destiny- A brief review of this docuseries is already available. So, I am not going to offer the same. I want to share what I learnt from this, what questions came up in my mind, and perspectives that were re-affirmed through this.

source of photo: https://www.imdb.com/title/tt1877895/mediaviewer/rm2670537728

Some of you may have already seen this series- ‘Daughters of Destiny’ on Netflix. I finished watching it today. Directed by Vanessa Roth, this series focuses on lives of some of the girls from dalit families, their aspirations, how their experiences at home and school ( Shanti Bhavan) shaped their perspectives as well as opportunities.

A brief review of this docuseries is available here. So, I am not going to offer you a review of this series. I want to share what I learnt from this, what questions came up in my mind, and perspectives that were re-affirmed through this. These are as follows:

  1. We can bring change, one step at a time, one person at a time, and one child at a time. But it is a long process.
  2. To make a meaningful impact, we will have to work consistently, and we will have to remain grounded. We will have to remain in touch with the vision and objectives that we started with.
  3. While we can decide how or in what way would we move forward to create impacts, we cannot possibly control everything, especially in terms of how each life is shaped.
  4. Each individual has the right to choose their paths, and also deserves to access support and opportunities to move forward on their chosen paths.
  5. Many among us will not know in advance what do they want to do in life or future, and that is okay for sometime. Eventually, we will get there.
  6. Being helped and allowing others to help us is not always (or ever!) easy. But if help can change things, let us take it. Experience of taking help can (and most probably will) make us feel grateful for help we got when we needed it. It can also create or strengthen the commitment to give back to our communities. And it can also motivate us to support to those who may need it from us.
  7. Everyone can benefit by having a mentor.
  8. Who decides what you should do with your life and future? It is you, of course! But then, how obliged do you feel to choose paths that may have been suggested by those who helped you? Is it obligation? or is it your faith in their suggestions?
  9. It takes courage to tell your stories, and share thoughts that no one would have known about you, had you not opened up. Everything has a purpose and all such stories add weight to the movements for change. Even if change through your stories does not take place too soon or at a big level, it will still have a potential to create ripples to impact few lives.
  10. But, the stories that you have shared about yourself- those do not have to define you throughout your life. You can change your story as life moves ahead, you can be a different person if you want, and you can change your strategies. It is nobody’s right to box/categorise you according to what they know about your past. You are not obliged to remain in those boxes or categories.

Do watch this docuseries and many like these.

Best wishes to all those who are trying to reach somewhere in their respective lives, and to all those who are trying to make their marks in this world!