Ally stories: Adi Raheja


Ally stories: Adi Raheja

Embracing differences, embodying inclusion

It is when Adi Raheja talks of his dreams for ABBF that he truly proves he is an ABBF ally through and through. “ABBF should reach every corner of the world,” he says. “Every village, every town, every city should feel the impact of this work. At the end of it all, disability should become so normalised that people forget this perceived difference. After all, adventure is for all.”

Adi at InSync #M2K2017

The first time Adi got on a cycle was in May 2017. In August of the same year, he cycled every kilometre between Manali and Khardung La, a distance of 550 kilometres including five mountain passes, as part of InSync #M2K2017, India’s first inclusive tandem cycling expedition. His motivation was simple – to show his solidarity to the cause of inclusion and to remind his daughter that anything is possible if only you set your heart to it. In the months that followed, Adi and Palak have become regular participants at our events. “I have experienced transformation,” he explains, “and I want that for her too. I want her to be committed to inclusion for her lifetime, be strong and overcome everything that comes her way. That is why Palak joins me as an ABBF ally.”

It was his experience in the mountains that set the ball in motion though. Having grown up without much exposure to Persons with Disability, he admits to feeling a certain awkwardness in the face of disability. “When the team played national anthems from every country represented, I knew this was a truly inclusive spirit. Even if there was only one participant, that person was important, respected, and treated like a star. That value system spoke loud and clear.” Yet it was not just at the beginning that Adi felt the spirit of inclusion defining the expedition. “This emotion continued all the way till the end. As we all trudged towards Khardung La and the finish line, the way ABBF responded to every person’s needs was as if they were the ones pedalling. ‘Support’ doesn’t begin to cover it.”

Adi at #EverdayAbility in Pune

Today, Adi not only embodies the value systems ABBF stands for, he makes sure to practice them in his sphere of influence and then go the extra mile to spread the word. “We are currently hiring for my company, and I am actively on the lookout to give PwDs the opportunity to interview with us. I know I couldn’t have cycled all that way alone. Or with anyone else. ABBF and its work are so much bigger than I am, and I am here to help.”

For Adi, his time with ABBF has been one of steep learning. “On the trip, I learnt to be non-judgmental and be unabashedly myself. I learnt the true meaning of inclusion – not extra empathy or extra pity or extra anything. Persons with Disability or others who talk differently, behave differently, act differently, come from different backgrounds – we are all fundamentally human. And we all deserve equal respect. That is the inclusion ABBF taught me.”

Ambassador Stories: Shalini Saraswathi

 

Ambassador Stories: Shalini Saraswathi

All-round superstar.

There is little that has not been written about Shalini Saraswathi. Blade runner, aspiring Olympian, travel enthusiast, successful professional, arresting speaker, it has all been said multiple times. All you need to do is Google the name and the stories shall emerge from the crevices of cyber woodwork. But at ABBF, our adjectives are a little different. Superstar, cheerleader, rockstar. The very definition of gregarious. Friend. Ally. Ambassador.

It was on an innocent vacation to Cambodia that Shalini’s life as she knew it would change. When her natural warmth and love for pets made her pause a moment to pet stray dogs, little did she know that action would set off a domino effect in the months to come. Contracting a rare bacterial infection called Ricketssial with morts, her next few months were spent on a journey that began with a fever and spiralled through multiple organ failure, coma, a “tango with death”, the loss of all her limbs, and a two-year recovery period. At the end of it all (or perhaps it is better heralded a beginning?), Shalini was a quadruple amputee.

One would think this was the opening of a drama, a movie filled with the trials and tribulations of Life, capital L and all. Yet, with Shalini, this was the start of something new, a journey defined by its positivity and candour. Believing that disability cannot stop anyone from living Life queen-sized, she set out on her journey to redraw her lines, redefine her boundaries, and see how much she can push the limits. It was this shared passion for not toeing the “rules” that brought her to ABBF.

“My interaction with Divyanshu began with a phone call,” she recalls. “Now, it has grown into a strong friendship anchored by ABBF. I just had to be friends with someone who did not think we just had to ‘survive’ with disability, but wanted to live the whole nine yards of life.” Thus, our story with Shalini began.

Shalini’s story with disability and sport has been one of unwavering determination. In the days following her amputations, she took it one day at a time. “I focused on the things I could do,” she recalls. “Reading saved me. I learnt classical music. I wrote. My friends and family were a huge support system.” When one of her arms got auto-amputated, Shalini remembers feeling relieved. “I just knew it was a sign to move on.” And in a few months, she was ready to get back on her (new prosthetic) feet.

“Growing up, I was part of my school volleyball team, I ran track for my house in school, and am trained in Bharatnatyam while dabbling in Kathak as well as salsa. Being physically active was a part of my life. After my amputations, I just wanted to get fit again. I checked out a few gyms but none of them knew how to deal with me. That is how I found myself on the track.” This serendipitous journey began with just walking and progressed to a jog and then a run. A few months after her blades arrived, she ran a 10K marathon.

Shalini Saraswathi: All-round superstar

Over the years, Shalini has been at the frontlines of our events, cheering us on, believing in the platform of inclusive adventure, and helping us in every possible way. Whether it is spreading the message, always having a kind word to spare, helping raise funds, or being uber-generous with her own contributions, we know we can always count on Shalini.

As a blade-runner and marathoner herself, she is no stranger to the power of play! “Playing is how we bonded as children,” she explains. “If we extend that and bring PwDs and able-bodied people together, we learn that disability is just a state of mind! That is what ABBF does – gives hope and joy to PwDs and opens up everyone’s lives through the power of interaction.”

We cannot be more thrilled to count Shalini as one of the biggest cheerleaders in our corner, and we cannot wait for all the adventures yet to unfold!

If you don’t believe us on the definition of gregarious, read this. For a more in-depth interview with Shalini, read this. To check out Shalini’s blog, head here.

Understand ABBF: Minors, consent, and keeping safe

 

Understand ABBF: Minors, consent, and keeping safe

At ABBF, we believe in two core principles when it comes to participating in adventure.

  1. Everyone is safe. No matter what. As long as it is in our control, it shall be covered, no matter how close to the finish line we seem.
  2. Informed consent is paramount. All our participants are very aware of what they are undertaking. They know of the risks with as much clarity as they know of the adrenaline and thrill. We tell them the facts as they are.

It is to ensure that these principles are truly conformed to that ABBF has a policy of only working with individuals above 18 years of age. All participants are required to give consent and sign waivers, especially for expeditions with a higher adventure quotient to them! (Think tandem cycling in the Himalayas, ahem.) When minors are involved, this issue of informed consent becomes a little difficult.

While ABBF understands that there is nothing except the line of legality that separates 17 years and 11 months from 18 years and 1 month, this line becomes an important one in the field of adventure sports. It is important to have participants who have legal and psycho-social autonomy, independence, and rationality. By the law, this privilege is only awarded to those above a certain age. We do however make one exception.

At ABBF, we fundamentally believe adventure should be open to all. How then are you restricting it only to adults, you ask us? We allow minors on board our events on one condition – parental participation. Not consent, mind you, but participation. It is not enough for parents to sign off the form for ABBF. No. For minors to join us, we require parents to come with us – cycle, run, assist, what have you – but be present. This is how fifteen-year-old Manasvi became the first blind girl to cycle from Manali to Khardung La (her father was her captain) and fourteen-year-old Ananya (who has cerebral palsy) experienced paramotoring with her mother’s help.

The idea is simple. We are committed to keeping everyone safe. This is only possible when there are participants who can take responsibility for their own actions. If there are those who can’t, we shall wait until they can or until they have someone to do so. Adventure is for all, but adrenaline cannot be traded for safety.

Understand ABBF: Why accessible adventure?

 

Understand ABBF: Why adventure sport?

Every once in a while, people ask us why we chose adventure sports when there are “so many other battles” to be fought. Why not education? What about healthcare? What about accessible architecture? What of representation in places of employment? The questions are endless and ever-flowing.

Here is why we chose adventure sport out of them all.

Adventures Beyond Barriers Foundation is not an adventure sports company. We are a disability organisation that uses adventure sports as a medium, a platform, a tool. We use adventure sports as a way to promote inclusion. We believe that inclusion is the ultimate goal and that there are various methods that one can adopt to reach it. Adventure sports is ours.

Nelson Mandela once said a few lines that speak directly to our way of thinking. He said:

“Sport has the power to change the world. It has the power to inspire. It has the power to unite people in a way that little else does. It speaks to youth in a language they understand. Sport can create hope where once there was only despair.”

By working with sport, we are creating an equal playing field (pun intended!), bringing people together and encouraging them all, disability aside, to push their own boundaries. There is an element of adrenaline, personal limits, and defining ability that is core to adventure sports in itself. It provides the perfect platform to get to know one another when everyone is challenging themselves in some form or the other. From these conversations, we believe, change will emerge – in mindsets, in attitudes, in perspectives, in actions. We have had people volunteer as scribes and readers (education, check), had participants more committed to health, nutrition and exercise as preparation for expeditions (healthcare, check), had relationships translate to possible job offers (employment representation, check), and had commitments to universal design and accessible adventure (architecture, check). By bringing people together for an accessible adventure experience, we believe in facilitating organic, individual-driven change.

At a more macro level, ABBF believes that the right to leisure and entertainment is one that is often ignored in the discourse surrounding disability. We forget that Persons with Disability too are as invested in winding down after a hard day, enjoying their Sundays, spending time in the outdoors. And we do not believe that we need to fight these battles for access in order – first X and only then Y. We believe in working towards a world of perfect equality of opportunity, independent of disability, and this means the ability to experience the peaks of the mountains and depths of the seas just the same.

This focus on leisure, entertainment and adventure is in keeping with the universal discourse on human rights as well. The Universal Declaration of Human Rights signed in 1948 states that everyone has the right to leisure (Article 24) and community participation (Article 27). (For a full list of the rights, visit here) It is internationally accepted that “leisure is not an idle waste of time or a mere absence of, or recovery from, work but rather necessary for a life of ‘dignity’…The right to leisure has been tied by a long line of empirical studies to individuals’ overall ‘well-being’” (Richards et al, 2013)

Long story short, we choose adventure sport as a platform to promote inclusive because of three things.

  1. We believe individuals are powerful agents of change and revolution needs start from one person.
  2. To create this change, you need to feel strongly about the cause and the best way to feel something is to experience it. Experience adventure, interact with persons with disability, and you will feel strongly guaranteed.
  3. No right of access is more or less important than the other. Everyone deserves the right to a healthy body and mind, and adventure is a great platform to achieve this.

And hence, at ABBF our request is simple. Come. Play. Grow.

For more academic content on right to leisure, read – Richards & Carbonetti (2013), Worth what we decide: a defense of the right to leisure , The International Journal of Human Rights, 17:3 329-349

Understand ABBF: Why do allies have to pay?

 

Understand ABBF: Why do allies have to pay?

Very often, we get asked the same questions from allies. “I am coming to help. Why should I pay to do so?” While our regular allies have gotten used to our model and understand our philosophy, this is a common source of confusion for people who are new to the ABBF experience.

The most straightforward answer to this question is that of logistics. Sighted or not, amputee or not, wheelchair user or not, the food you eat and resources you use cause the same amount of money. The refreshments for marathons, trainers for specialised sports, venues when applicable – all of these costs do not discriminate between the able-bodied and person with disability. And hence, everyone pays.

While this is true, the philosophy goes much deeper and matters much more. At ABBF, we do not believe you are here to “help” at all. We do not think able-bodied allies participate to “give an experience” to “less fortunate” individuals or any variation of such sympathetic, hierarchical explanations. Inclusive sport is an experience for all. Accessible adventure is a learning opportunity for all. By being an ally, your perspectives and points of view are just as likely to change as your partner’s is. It is for this experience, this shattering of stereotypes and breaking of barriers, that we ask everyone to pay.

At ABBF, our allowances are based not on an ableist lenses at all. Instead, we believe in focusing on economic privilege and financial ability. If our participant, able-bodied or with disability, is truly unable to afford the experience, we do what we can to make it happen. After all, the platform is about inclusivity. Yet perhaps the first opportunity to internalise this inclusivity is this – to remember that the experience costs the same for everyone.

Understand ABBF: PwD, not disabled or differently-abled

 

Understand ABBF: PwD, not disabled or differently-abled

Ever so often, we get called up on why we insist on using the term ‘Persons with Disability’ at Adventures Beyond Barriers Foundation. Why not ‘differently-abled’ or ‘specially-abled’ or ‘divyang’ or the various other options that exist to refer to this community of people? Let us tackle them one at a time and see if we can explain ourselves here.

Our issue with the phrases ‘differently-abled’ and ‘specially-abled’ is two-fold. On the one hand, it euphemises the experience of disability, clothes it in colours it is not, and reinforces the image that it is something to be shied away from and whispered about. By using ‘differently-abled,’ you suggest that there is something slightly amiss about that situation, but it is too awkward to talk about. Think of the last time you called something “interesting” or “different” and you will get what we mean. If you really do want to go down the ‘differently-abled’ path, you will hit the next problem. By the strictest definition, we all are ‘differently-abled’. I type faster than you, you do mental Math better than the person next to you, he sings better, she runs faster, what have you. The minute you tread down that path, you are euphemising, belittling, and taking the limelight away from the entire purpose of the conversation.

Next, the newest addition to the list – ‘divyang’. The term ‘divyang’ attributes an aspect of divinity to a person with a disability. Suddenly they become god-like, unattainable, rising above mere mortals on a pedestal that, if you think about it logically, does nothing for the discourse surrounding disability. It also entirely ignores the years of discrimination, lack of access, and ill treatment the community has had to undergo. By making them gods, it all becomes okay. Activists and advocates all around the world are fighting to mainstream disability, ensure people with disability are accepted into everyday society and have access to the same everyday experiences as everyone else. By making them akin to gods, we only alienate them further. Multiple individuals with disability have expressed their discomfort with this pedestal, this need to make “inspirations” of their lives in order to accept, as deeply alienating.

The third on our list is ‘disabled person’. Now, for many of us, there may not seem to be that big a difference between ‘disabled person’ and ‘Person with Disability’ but the difference exists and it is crucial. Let us turn to English grammar to explain it. When we say ‘disabled person,’ the word ‘disabled’ becomes an adjective to the person. What kind of person is that? Disabled person. There is nothing else about that person you know, and the phrase does not leave you any space to learn. ‘Disabled person’ becomes the sole identity. And of course, we all know this is just not true.

This brings us to why we insist on using ‘Persons with Disability’. The simplest reason would be that this is the international convention. India was one of the first countries to sign the UN Convention on Persons with Disabilities in 2007, and ‘PwD’ remains the international standard of nomenclature. The real reason however, is deeper than “because they said so.” When we use the phrase PwD, there is automatically an equal onus placed on the ‘person’ and the ‘disability’ – all hail prepositions! It tells you that the person has a disability but in all likelihood, has so much more as well. Here is a person with disability, here is a person with the great haircut, here is a person with the best sense of empathy you know. When you say PwD, you are giving the person the space to be so much more. You are allowing them to be fully human, without reducing them to their disability.

The usage of PwD ties in directly with the social model of disability, the perspective that we subscribe to at ABBF. According to the social model, disability is not an individual problem at all. It is a systemic, social, structural problem. Picture us this – if there is a person who is wheelchair bound, we imagine them to be disabled because of their inability to walk. Why do we walk? To access spaces and places. If these spaces and places had ramps leading up to the door, would this person be able to access them as well? In which case, is the disability in the wheelchair or in the absence of ramps? Thus speaks the social model of disability, arguing for the need for external society to adopt universal accessible design.

Fundamentally, at ABBF, we believe in the power of small things to create change. Our organisation is built on the power of play and we believe that equally influential is the power of language. Use the right words repeatedly and it will seed the thought of change in the collective mind. Use ‘Persons with Disability’ and you will remember the core tenet of our work. Yes, there is disability, but there is also so much more.

Some more interesting articles to read are ‘How “Differently Abled” Marginalises Disabled People’ and ‘In Fact: Why calling India’s disabled ‘divyang’ won’t enable them’

Guest post: Ananya Mishra is bitten by the adventure bug!

 

Guest Post: Ananya Mishra is bitten by the adventure bug

Photo Courtesy: Ananya Mishra

I’m Ananya. I study in class VIII in Navy Children School, New Delhi. It’s been a long journey from being a baby in a pram to being a fourteen-year-old teenager. Due to cerebral palsy, my movements and activities are generally restricted to an outing to the park in the evening. Often, I dream of playing basketball on my own with the other girls, jumping high into the air and catching the ball, my hair flying. It is an exhilarating feeling just to think of all that. Yes, I love adventure sports – trekking, swimming, running, going to the mall or camping in the hills with friends – all on my own! That’s quite an adventure for me and I would love to do that someday…One memory that stands out is going to Taj Mahal in Agra with my classmates as a part of a school outing. My mom took me everywhere on my pram. Even inside the premises of Taj! I also did snorkeling assisted by my father recently in Port Blair but full-fledged scuba diving is something I still look forward to.
In the midst of my daily life (which is fairly predictable), the paramotoring event came as a pleasant mega surprise! When my father came to know of it, he was excited! So was I! My mom had apprehensions though. Even I had my doubts. My mind had questions like ‘what if I fall and die?’ Funny as it may sound, I discussed this in detail with Mr. Divyanshu. He made me laugh saying that he would catch me if fell down and I better not puke!!
It was very nice – the green grass sprawling over acres of land and the roar of the motor as it was put under trials and tests, excited participants waiting for their turns to fly in the air! The staff of Adventures Beyond Barriers were extremely encouraging. They spoke to me, smiled and waved, and gave me thumbs up signs, especially Mr. Divyanshu, whose smile, high-fives and encouraging pep talks made me feel much more confident about my ride up in the air!
All my nervousness vanished as I got strapped in my motor and amid waves and excited hoots, I did not realize when I took off into the air. Up, up and away. Away from all the earthly affairs and limitations of society, going close to the clouds, behind the sun like a bird. I never wanted to come back. I felt that nothing was impossible, that I could do whatever I wanted, however impossible it may seem at first.
Yes, I would like to do this again. Not only because of the excitement of being up in the air, but also because of the lovely people of Adventures Beyond Barriers who I get to spend time with. I look forward to trekking and camping next!
Ananya Mishra

Understand ABBF: Ally, not volunteer

 

Understand ABBF: Ally, not volunteer

At ABBF, we are very clear about the role each of us play. We are each a piece in this larger puzzle. Together, we will make the picture of a more inclusive, more accessible, more empathetic society defined by equal opportunities for Persons with Disability. Each of us play a role in transforming this vision into reality. And that is why you are our ally.

There are many things wrong with the word ‘volunteer’ in our opinion.

We do not have hierarchy. Let me help you, “volunteer” to do something for you. The giving becomes one way, from the able-bodied to the Person with Disability. It becomes all about giving with no space for getting. In every event, we have seen this to just not be true.  Information flows both ways. Experience dawns both ways. Transformation occurs both ways. There is no hierarchy.

You work with us. There is an impression that comes with the ‘volunteer’ tag usually – we tell, you execute, everyone walks away happy. What a bore. That is not how we roll at ABBF. We are looking for people to work with us – innovate with us, strategise with us, build with us. We are looking for people who will be invested with us. And whether you are an outdoorsy person or not, whether you have experience working with the disability sector or not, it could be you. If you are willing to engage, commit, and work towards the shared goal of inclusion and accessibility, you are our ally.

At ABBF, everyone is long-term. The problem with volunteering is that you always feel like you can leave whenever you want to. While we do not force you to come to our events and head into the outdoors, we do hope that experiencing inclusive adventure will lead to a long-term attitudinal change in your personal life. We hope that after even one event, you become more aware and sensitive to the needs of inclusion and accessibility. And this means that even if you cannot come back to events with us, this awareness will influence every aspect of your life. It will inform your conversations, your work, your reactions to the world. In this conscious, committed effort to keep inclusion in mind, you become more than just a volunteer. You are our ally.

At ABBF, we are building a community. The more voices we add to the table, the more energetic, innovative, and spirited the debate becomes and the more change we can bring about. To fuel this transformation, we need synergy, long-term engagement, and the willingness to work on a shared platform. We do not volunteer. We ally.