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/