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]

Challenge to Change: Elder Disability and Us

Today (20th December) is my Nani’s birthday and it seems apt that I am writing this…she was the first family member whose experience as a physically challenged person was closest home. When she lost a leg to gangrene, my mother brought her to our home.

With her crochet needles in hand, knitting away toddler clothes, adult blankets, mufflers and mats: reading and chatting for long hours, using the walker to the dining table and accessible areas of the house, she lived on smiling and crying (yes sometimes), as she felt the love and the trauma through her decade of disability. I was witness to and part of this journey with her.

Grateful and thankful for the ‘looking after’ by my parents (now popularly known as caregiving), nani was very much part of our life...socialising, going for outings with us with her wheelchair and walker...

I had almost forgotten those years...until they came back when my 69 year-old father had to start using a wheelchair.

My 62 year old mother whose heart had been renewed (as the cardiologist told her a year before), a diabetic and someone who had helped my father recover from a near-fatal accident two decades earlier and then taken care of nani...and I, shared this life journey with him 'hands-on'.

Mummy's love, caring and sharing time with him watching TV, going to the Gymkhana Club, physio sessions, housekeeping, ensuring she made nutritious and timely meals for him was irreplaceable.

Papa was the source of our strength…financially, emotionally and physically! I know that he felt the burden on us, was angry about what had happened to him too, but he had made some sort of an 'acceptance' which was actually calming for us...and he made up for the 'handicaps' in his own way, and as much as he could.

You could not win in terms of the energy he had, the humour and happy spirit he always created in our home and getaways. Going out with the two grandchildren to Lodi gardens, malls, parks, playing and painting with them…he made it fun and cherishable memories for their growing up years I think. Papa's eyes would always sparkle when he spoke to or met my younger sister at their home in Bombay..she pampered him lots and he loved that she was so outgoing and friendly like him. There was a kind of 'normalcy' to our life that his 'endearing spirit' granted us, and I think I got the courage from him, to take the lead in making it 'real'.

Papa was a winner of the Himalayan Car Rally in the early 80s, he was an ardent car lover and even made some amazing paintings of classic and vintage cars. While driving him around in his car in these years, he would often say 'lets get an automatic and then I can drive too'.

Movies in theatres, music performances and plays, lunches and dinners at accessible restaurants, clubs and homes…dancing arm in arm, holidays in the hills, picnics in parks, flights, train and road journeys…nothing stopped me from packing up his wheelchair and take him anywhere...he was with us and ‘smiling’ …that’s all that mattered…

Ofcourse I learnt along the way how inaccessible every place and person was to someone who was on a wheelchair…over the years I challenged some and changed some. Getting him into the train or aircraft doorway and moving him physically onto a comfortable first available row seat...it all took a lot of planning and sometimes on-site negotiating. I would get stared at with some eyes of amazement, "how is she doing this?", and (sometimes) I would also get physical support.

PVR cinema in Saket, New Delhi became our hub for movie entertainment and for the staff there, papa was the first wheelchair-using and regular older person audience. They even made a movie on his presence at the theatre every Sunday and much of their ‘senior citizen’ incentives and accessibility steps I am sure were inspired by my father’s insistence of watching movies there!

I knew that I had to make some life changes especially viz my work and sometimes, I took my parents (or just my father) with me. Papa would come to meetings, events and melas with me, but only after I had checked if the spaces were accessible. He particularly enjoyed the Kriti Film Club screenings which were held at India Habitat Centre, and it was also because the staff there made it comfortable and 'normal' for him. His presence was enjoyed by many of the young volunteers, friends and work colleagues he met...I especially remember him strumming his harmonica on a few such events.

I know that it was only the love that we shared and the belief in his ‘abilities’ that got his (shortly lost) memory back post the paralytic attack, his paint brush back in hand after I organised an exhibition of his paintings at India Habitat Centre, his laughter and jokes cracking us up with tears for hours, his harmonica giving us the rhythm and music we needed to keep going…One of papa's forever tasks at home was polishing the brass and wooden furniture, beating the eggs for omelettes, and cream for 'white butter'...despite the left hand's inability, he did these with gusto!

And yet, he lost so much…to gain so much more. Many friends and extended family members at parties who would not stand and chat with him with drinks in their hands as he was NOT STANDING…it was their loss! And those who did ‘sit’ or ‘stand’ with him enjoyed his company as the ‘gregarious person he always was’. No one could get over the strong grip of his handshake...yes it was one of a kind!

In these years I saw the lack of patience and kindness that we have in our immediate and extended social (and sometimes even medical) environment towards older people. Generally speaking, people with disabilities are socially excluded and it makes it worse when they are old as it is double exclusion...what can we do to change this experience and reality for our elders. 

Let’s talk about elders' disability, 

let’s talk about being daughters and sons to ageing parents, 

and let’s talk about accessibility, inclusion and 'unconditional love'.

As a three-some, we would talk about how people thought that papa was ill, but was he? As if they would get a ‘disease’, or disability? It would make us sad, yes that emotion was an underlying reality but we would not stop living, loving and laughing!

Mummy becoming a wheelchair user didn’t stop us…because we had each other! 

Kisses and hugs to warm the heart amidst crying and fighting against our respective anger, it was all part of the story...with THANK YOU's and SORRY's along the way.

Our relationship was dynamic emotionally and intellectually which many adult children may not have the opportunity and circumstances to have. I realise that there are ways to ensure parental emotional and physical well-being during their old age but ofcourse I cannot say it was easy on me despite everything. I just choose the brighter moments to guide me in the present and future without them..."I got as much and even more than I gave in a positive way".

written with love by a daughter

This post is a part of “International Day of Disabled Persons” blog hop hosted by Sakshi Varma – Tripleamommy in collaboration with Bookosmia. #IDPD2022Bloghop. Access all posts of this bloghop at https://tripleamommy.com/2022/12/02/idpd2022-lets-make-this-world-a-more-inclusive-space/

Of Women

“To call woman the weaker sex is a libel; it is man's injustice to woman. If by strength is meant brute strength, then, indeed, is woman less brute than man. If by strength is meant moral power, then woman is immeasurably man's superior. Has she not greater intuition, is she not more self-sacrificing, has she not greater powers of endurance, has she not greater courage? Without her, man could not be. If nonviolence is the law of our being, the future is with woman. Who can make a more effective appeal to the heart than woman?" Gandhi