Love, Care & Support Naturally

Writing this blog post to mark Disability day this December 3rd, 2024, takes me back to memories forgotten. It was 1982 when I first saw someone in my immediate family ‘unable’ as my father recovered from a near fatal car accident. The memory is very faded though as I was very young, school going and my mother was holding the baton strong as she became his care giver for months before he was back on his feet…he had the strongest willpower in the family and never looked back! 

My first hand experience with disability was while I was in college and Nani’s left leg was amputated. I was given the responsibility of burying the amputated part as my dad was on posting while mummy was by her side. I still remember being shocked when the attendant told me and mummy that we had to do this…but then papa said on the phone…you are a strong girl! 

‘Ma’, as we called her and my parents, did not let the trauma affect our daily life as each of them were a caregiver in their own right. Mummy, by being the daughter who would help her where she needed it asked for assistance and cooking healthy and tasty meals for Ma! Papa would not blink an eyelid and just pick her up on his godi or prop her up on his shoulder like a baby, and bring her three flights down from a DDA flat and into the car. We would go for picinics, family events and lone drives, with Nani’s walker in the dikki.

Nani was a Lahori woman of courage and would use a walker to move around in the house and do her daily chores on her own. I can see that strength on her her ageing and gentle face as I remember those years. With her crochet needle, she spent hours knitting mufflers, dressing table coasters, baby clothes to gift, and the cosiest woolen blanket that I snuggled into and slept with last night. She was a winter born, and her birthday passed on the 20th of December. 

I was witness to the love and dignity that my parents gave her in those years, kept her cheerful to her last breath, ofcourse with some inevitable tears that made her human. I remember mummy filling in the blanks of stories that nani would start to tell of her life and somewhere in the middle forget. In later years, when my dad a few months of memory lapse, she did the same and I would prompt him of some experiences that had me in those memories. When meeting older relatives and friends going through Alzheimer’s, I learnt how to navigate through conversations of memory loss cherishing their presence and thinking of the human being in our lives as so special.  

Ma was the first woman dentist in Lahore. After marriage, she supported my freedom fighter nana, trade unionist and parliamentarian steadfast and looking after the family of workers and themselves with a lot of struggle and wisdom.

Perhaps it were these experiences of my life that impacted (and made) my life as a care giver. From 2010 to 2018, our family car had one wheelchair and then two (from 2017). As the daughter living with my parents, I ensured that I prioritised being the care giver of my father with mummy, due to his immobility. And then, a few years after, of my mother who lost her will to remain well. In hindsight, it was, I believe, a care givers’ burnout, along with medical reasons. I did not hire attendants and nurses to do the daily everyday basics as what came to me naturally was what they did for me as a baby…the touch of love and care was the healing for years going by…helping bather, wear clothes and more…

With the steering wheel in hand, I would drive us to movies and outings on Sundays and weekday evenings in the city, living it up as the Kapurs always did! His painting did not stop even as I organised his first ever exhibition which became his inspiration to pick up the brush, the pencil and the crayons once again. With assistance when I had it or alone, I would pick up papa like he did for nani and I was just so grateful that he made it easier by his gracious acceptance of support from his daughter. His hand on my head, his cuddle when we slept at night and his words ‘Thank you Aanchie” keep me going till this day. We went for holidays and weddings by road, train and air to the hills, the plains and the sea side. Each time I experienced the complete lack of disable friendly access at public spaces, toilets, parking, etc. (Thankfully this is changing gradually but not yet peoples lens). PVR Cinemas introduced access for old and wheelchair users after my dad became the regular at their theatre every Sunday, and their staff would pick the wheelchair up the stairways to ensure he had his movie time! We would mostly be just one family with a wheelchair bound parent, and many would give me a compliment…my response would always be…they brought me up with love and care…and made it easier for Nani…”I am enabling them to live through their ageing years with the same feelings, but it can never matchup!”

Today, six and a half years since they both passed, in a span of two weeks between them…I reminisce about those days and months and years when I experienced complete insensitivity, apathy and a ‘look the other way’ attitude from relatives, friends and a social infrastructure that invisibilses the disabled in body and mind. I faced challenges in the physical infrastructure around that doesn’t provide ease of wheelchair mobility on streets, roads, open marketplaces, ambulance movement, parking spaces, nor disabled friendly public or private transport.

As I look out of the airplane window and see the cloudscape in the blue sky…another memory flashes before my eyes. Asking for wheelchair access for flights is one thing but how many people travel (forget about on their own) with those who cannot walk at all? I had to always put in a special request asking for a free first seat for my father as I would have to hold him up from the wheelchair in my arms and then help him sit. 

The onlookers always had a sense of pity in their eyes, and some amazement..we need more wheelchairs out with able (old and young) people sitting and moving around. We need real social and physical infrastructure and not just conferences and awards to visibilise the essential life needs of those who are not as able anymore! It’s a time for social inclusion and support, not isolation and pity…

We must be caregivers, immediate and distant, with a mind of positivity, to give a hand of assistance, like I instinctively did, when seeing an old man trying to take the first step down Humanyun’s tomb…and his wife blessed me as we walked along the paths of life enjoying a cold winter evening in the city.

Aanchal Kapur

[This post is a part of “International Day of Persons with Disability” blog hop hosted by Sakshi Varma – Tripleamommy. #IDPD2024Bloghop. Access all posts of this bloghop at https://tripleamommy.com/2024/12/02/beyond-barriers-amplifying-voices-for-inclusion-marking-idpd-2024/. Please also mention my website www.tripleamommy.com]