Protecting My 48-Year-Old Brother With Down's Syndrome: A Trip Down Memory Lane

Over the years, my parents have confronted several seemingly innocuous enquiries about my brother’s condition.

I distinctly remember the pain in my mother's eyes and her anguish caused by unapologetic stares by strangers during our train and bus journeys. I remember teenagers pointing fingers at him only because he looked different from others.

(Photo: The Quint)

Last week's episode of a teen with multiple disabilities being denied access to board an IndiGo flight rightfully took the internet by storm. It usually takes a highly charged incident like this to highlight discrimination against persons with disabilities. What was heartening to watch was how the doctors’ delegation, teachers, and government officials advocated for the child. Without their involvement, this incident would have never come to light.

As I read a Hindi article on his father's side of the story, I went down memory lane. My brother is a 48-year-old young man with Down's Syndrome. Over these years, my family has had our own share of similar incidents.

'Does It Run in Your Family?'

I distinctly remember the pain in my mother's eyes and her anguish caused by unapologetic stares by strangers during our train and bus journeys. I remember teenagers pointing fingers at him only because he looked different from others.

My dada (elder brother in Marathi) is non-verbal but he can recognise when he is being singled out. Over the years, my parents have confronted several seemingly innocuous and insensitive enquiries about my brother’s condition – “Kya yeh janam se hi aisa hai? Does it run in your family? Is he violent?”

As a young girl who wanted to protect my brother, my immediate response was to confront these strangers and fight.

A decade ago, when my parents moved to Hyderabad with me, I visited an old well-known organisation for my brother’s assessment.

The psychiatrist there kept us waiting for hours, thankfully I did carry some food for my brother.

Finally when he called us for assessment, he looked at my brother top to bottom and commented to his assistant (ensuring I could hear him) with an air of ridicule – “38 year old man with Down's Syndrome, kabhi dekha hai?”

A prevalent notion is that people with Down's Syndrome have a short life expectancy. And this was a trained physician who was supposed to understand developmental disabilities.

This incident has remained with me to this day. Time and again, I have wanted to confront him only to inform him that my dada is 48 now and thriving! I also do wonder if he was really qualified.

Stigma Pushes Families To Keep Away From Normal Life

Speak to any family impacted by disabilities and they will share their own experiences, and just like me, they haven’t forgotten the most hurtful ones over years. It is almost impossible to shake off the pain, the insult, and the ridicule. Typically, whenever this happens we all freeze and are unable to react. Sometimes we are at the mercy of the very people to get a job done, perhaps an assessment, perhaps a government certification or perhaps onboard a flight.

One cannot imagine the amount of hard work, planning, sleepless nights, and sacrifices that go into caring for a child with disability. And as if that is not hard enough, families confront hurtful comments and stigma which makes the situation even difficult. I have spoken to umpteen number of parents who were told that their child would be a vegetable anyway, then why invest?

They are advised to focus on their 'neurotypical' child and not 'waste' time on the one with disability. The pain a mother feels when her child is not included at the playground or not invited to birthday parties is a recurrent conversation in our support groups. There have been instances where families have been advised to vacate their house as their child is very loud and the neighbours cannot take it.

Stigma and insensitive questions all around push families to refrain from attending social events. This isolation and stigma push persons with disabilities and families to form a community of their own.

Schools find some excuse or another to deny admission to our children despite the Right to Education (RTE) Act. Almost always, the inaccessibility of public transportation makes simple travel a hellish experience for people with disabilities.

Every few years, we read headlines of young people with locomotor disabilities being denied entry to pubs and upscale restaurants. All of this amounts to severe isolation of people with disabilities and their families.

Discrimination Comes From Within Family As Well

And let me be clear, it is not always strangers who are prejudicial. Sometimes, discrimination happens right after birth – at the hands of the very parents who are supposed to love and care for the child. Innocent and helpless children face abuse at homes as family members are unable to accept the child’s disability and cope with the stress.

But there are good people, too.

We all need to remember that like everything in life, this is not all black and white. There are good people like the co-travellers at Ranchi airport who cared, who support the cause, and who want society to be inclusive. Many others lack empathy because they have never been exposed to people with disabilities and have their preconceived notions.

It is important for us to acknowledge that although we face discrimination, we also meet wonderful supportive people on everyday basis who make our life a tiny bit easier.

It can be the milkman who greets our children, it can be the vegetable vendor who always returns change to our children, it is that dentist who is empathetic and magically makes tooth extraction easier, it is that swimming coach who is not trained in disabilities but willing to work with your child. It is that autorickshaw driver who waits for us everyday at the predetermined stop so our child does not have to walk too far, it is that nurse who always gives our kid a sticker after that painful injection, it is that elderly uncle who always enquires when our child misses that one day of evening stroll.

That brings us to why some experiences are good and others not. Some people are more predisposed towards inclusion, while others require prodding and open conversations about inclusion.

Let's Normalise Disability

Where does it start? Where does it end? It can start with more exposure to disabilities and differences of all kinds. Exposure from a young age ensures that minds are shaped. If children study together, they will learn how to communicate, play, and include their differently-abled friends.

They would know about adaptations required while inviting their friends with disabilities for a birthday party or a playdate. What better way to forge sensitivity in future citizens of the world?

Future citizens who would be doctors, engineers, architects, and yes, managers for airlines! Citizens who will not discriminate but include. Citizens who will understand that people with disabilities are not a threat but an opportunity to be kinder and better versions of ourselves. Citizens who will recognise that they are people first, people who must be rightfully included.

Normalise disability and the person becomes one of us. It is high time the discussions leap from the pages you and I read to action in everyday life. Policies are just words if we do not carry them out in the right spirit.

Let’s start. However small your effort may be. Every effort counts. Anyone with experience of disability will tell you that.

(Prachi Deo is the founder of Nayi Disha. Nayi Disha works as a lifelong partner for families impacted by autism, Down's Syndrome and other disabilities. Visit their platform to know or call/WhatsApp their free helpline at 844-844-8996.)

(This is an opinion piece and the views expressed above are the author’s own. The Quint neither endorses nor is responsible for them.)