Saturday Evening

Small moments of reflections and gratitude

It was Saturday evening, my fav time of the week, and I was headed to a friend’s farewell party at a local brewery. She was leaving Amsterdam for good and had sent an open invitation to her friends to stop by per their convenience. I arrived halfway into the evening with the party already in full swing; the weather holding up, people mingling, beer fuelling the banter, in short, great vibes all around. I got a pint and circled around the small crowd – some familiar faces, others not. There was one conversation in particular from that evening that’s stuck with me; clearly.

A lady, my friend’s friend naturally in this case, was talking animatedly to few people within earshot, something about her family. I was there too, perched on a bar stool, half listening, on my 3rd pint by then. Words from her story that nagged at me though – ‘doctors’, ‘worried’, ‘disability’ – floated back, beckoning me into full attention.

The premise: her family member had given birth to a baby who’d very likely have partial vision and hearing, causing that family, relatives included, stress and concern. I was now listening, in rapt silence, ready to jump onto my ‘soapbox’, should the story turn into a pity party; ‘people with disabilities don’t need pity… Exhibit A: 🙋🏽‍♀️’. The family had consulted many doctors and were now at the stage of considering their ‘options’. I was curious – what other option could there be besides loving and accepting the child?

For most children, their parents are the main protagonists at the start of their journey. We know that. The “How to be a good parent” industry is a continually booming one. But just how much of that industry caters towards parents who have children with some form of disability? Going by my own experience, not much. My parents were solo warriors when it came to ensuring I had the right upbringing.

In an ideal world, parents of children with disabilities need therapy, reassurance, guidance, books, media, health/medical systems, processes, post-natal care, education etc., in other words a full ecosystem to fall in place to equip them with the right tools, and more importantly, the right mindset. Call it sentiments or the beer talking, can we please take a minute to appreciate the woes of any new parent? Naming them ‘allies’ doesn’t do it justice; they practically live it. Special or not, doesn’t matter, just makes sense to have a full-blown care model for all needs of all parents.

Coming back to the lady’s story: to my pleasant surprise turns out there are real and tangible ‘options’ to be considered by the family:

• There are structured communities organized for parents with similar experiences who can voluntarily meet up for tips, shared experiences, and friendly advice.

• There are also caretakers (categorized as babysitters, specialized day cares, midwives) trained to offer targeted help as per the need.

• And what impressed me the most: the Govt. of NL has a bureau of social medical care (excuse my poor Dutch translation). They work with families, individuals, to understand requirements, needs, daily life schedules, and thereafter devise a plan with services and solutions (covered by insurance!) to enhance daily life. For E.g. I later learned that my colleague’s brother who’s in a wheelchair and lives alone, through this bureau he has someone visit everyday for few hours to support with chores.

How cool. Safe to say my personal impression from years back, can now be officially regarded outdated.

I do think, the education system still remains an opportunity; wherein teachers and staff can be trained further when it comes to inclusion and integration. My school and college years were interesting. I had quite the experience growing up in an all-girls convent school run by British nuns in New Delhi – yes, my first social interaction with boys who weren’t family was well in my teen years. I was the only one at school to wear an arm prosthesis, and the only one with a special school uniform that had long sleeve shirts. Looking back, could my westernized school have done more to promote an equal mindset? Maybe. Never too late.

Hearing the lady as she narrated her story, I may have sensed an undertone of involuntary sympathy/dejection, but thats okay. At least the topic was being openly discussed, even encouraging people to open up with similar anecdotes - massive step forward in my opinion. Granted it's not the typical pub chat but the mood wasn’t awkward or sad either – because it doesn’t have to be! I took it as a sign of evolution and maturity; that comes with systematic changes in infrastructure - the more people see it, the more they unconsciously believe it. Classic consumer behaviour.

I felt grateful that Saturday evening. Grateful to know about the progress society has made and is making when it comes to empowering families and other allies of the disabled community. There’s of course so much more to be done at an individual and societal level. But I’m taking the small wins and dreaming ahead; I always carry my ‘soapbox’ around for good measure, but at this rate… can it be that I can show up hands-free?