It is often expressed by me that an event of great consequence in my life occurred when I was barely old enough to create everlasting memories – it was the birth of my significantly disabled brother, David. Even though I was just short of two years old at that time, the severity of the situation that was relayed to me later became a traumatic remnant, from which I believe I’m yet to entirely heal.
Flashback to 1983, my parents were nearly in their 30th year of life, my mother having freshly qualified as a doctor, while my father was employed at a tertiary collegiate institution. Both brought up in Catholic households, they had made their home to the north of the Border, in the southern part of Down, a region located just outside Newry. Alongside their normal, healthy toddler -me, they had no inkling of any medical concerns to anticipate with their impending second child–until his birth, when it was unmistakably apparent that something was amiss. The newborn’s survival was so unpredictable that an immediate baptism was administered at the hospital. They later received the troubling prognosis that their son has a unique chromosomal disorder, resulting in serious lifelong disability.
A significant aspect of my early years involved explaining David’s situation repeatedly to people. I often caught myself stumbling over the word chromosomal, struggling to answer people’s queries about David’s disorder, which sparked suspicion whenever I admitted the condition had no specific name. Indeed, numerous such conditions exist, so uncommon that sometimes only a single individual worldwide might present with them. They typically occur due to a misplacement, inversion, or loss of a DNA segment. While it’s common knowledge that Down syndrome arises due to an extra chromosome, I often end up explaining that David’s ailment is of a significantly higher magnitude, despite just a minute segment of one DNA being inverted.
During the 80s, our home location was on the edges of a rural community, adjacent to open fields until the eventual development of a housing estate in the early 90s brought neighbours much closer. The dynamics of our household expanded with the addition of a sister and another brother, both perfectly healthy. Spanning a total of seven years, four children were born, ensuring there was always someone either crying or in need of a diaper change. The marked impact of David’s disability seemed less significant by then. In his childhood, David resembled a cute doll that we could easily trail around in a standard pram, often sharing it with my sister or the youngest sibling. As the eldest child, it became apparent from an early stage that I would need to self-manage. A regular car seat and an ordinary vehicle were sufficient for our transportation needs, albeit the demand for a more spacious Renault Savannah to accommodate the extra row required for four children.
My exposure and understanding of disability were significantly influenced by my Catholic upbringing. On occasion, both relatives and well-meaning strangers would suggest we were fortunate, and our family was bestowed with an angel. It was a sentiment also shared in the hospital following David’s birth. However, growing up amid constant tears, distress, and pain, with my brother frequently struggling with cessation of breathing and horrifying seizures, this perspective baffled me. My convent education taught me that God shapes all babies from the moment of their conception, implying some profound rationale behind my brother’s condition. I could never adhere to this belief, which to me was a reflection of pro-life propaganda, and likely spurred my drift away from the faith.
Describing David in his present form is akin to referring to a persistent newborn, except now he tends to express himself louder and sometimes resorts to self-inflicted harm through slapping or scratching.
Throughout my youth, I was often found defending my brother and acknowledging the derogatory looks we attracted, from both youngsters and grown ups who should’ve acted better. Even now, I see myself addressing and rectifying discriminatory language. We weren’t aware back then that using the term “handicapped” was wrong, thus it became a common descriptor for my brother as “the small handicapped lad”. The society back then seemed much less accommodating towards disabled individuals – several times we’d visit eateries without appropriate meals for him, bystanders would mock his public outbursts, non-badge holders would misuse the disabled parking spot, or pointless staircases would pose difficulties as we manoeuvred his pushchair or wheelchair.
Conveying to kin that it was challenging to take him to occasions far away was not always understood. I often felt reprimanded when I endeavoured to make new acquaintances understand the complexity of his disabilities. This is something I continue to experience, despite my explicit explanation of his dependency, there are still queries about his ability to walk or talk. A fitting comparison of his condition could be a newborn who can, however, be loudly vocal and potentially harm themselves, suffers pain without the ability to express, and rejects food and water if under respite for more than a few days. An episode a few years ago, when my parents were on a holiday, almost caused his demise. This incident left them guilt-ridden about taking any break whatsoever.
The crucial element that we somewhat overlooked three decades previous was the quality and quantity of care and assistance that was readily available. Regular respite care was provided along with relatives who were more inclined and capable to care for a disabled child, who is now a challenging adult. I harbor considerable grudges against the Catholic Church, but they did contribute to my brother’s caregiving. Although, I was once secluded by a nun at school for a private chat about my domestic affairs and to remind me to be thankful. Yet, for years, we managed, even with both parents balancing full-time and evening employment. We employed an unregistered babysitter- as no one would cater to David – and he would spend his day in what was referred to as a “special school”.
Our family trips were solely to Ireland because he was incapable of plane travel. On two occasions, though, my grandmother took on his care enabling us to visit America. It seems surreal now to think that he was left for three continuous weeks- a scenario barely credible in light of reductions in care services. He faced numerous surgeries in his childhood, one occasion requiring a full-leg cast for a period to realign his hips. It fell to me to ensure he didn’t injure or strain himself, a decidedly challenging task given his lack of comprehension and my own young age.
Progress occurs in varying degrees. Perceptibly, accessibility and awareness is significantly enhanced, and the prejudiced comments that were common in the past sound inconceivable now.
As he entered his 19th year and I was away at university, plagued with guilt for my absence at a critical time, a problem arose. David’s school term ended and there seemed to be no obvious replacement. My parents contemplated whether one should relinquish their job permanently, during this tense and gruelling time. Eventually, he found placement in adult day care, which he attends most weekdays. He is driven home and picked up by compassionate drivers, a service my family would have struggled without. They are part of the group of care staff that dedicate their lives, despite the meagre compensation, caring for the disabled. They deserve better pay and support, just like families that take on the immense responsibility of care, especially since they are the linchpins in this system. David’s requirements have escalated with his age, necessitating an adapted bed, a customised van for his wheelchair, a hoist, and a modified bathroom.
[according to Claire McGowan: “Why is the city of Belfast invisible in romantic novels?”]
The unforeseen impact of Covid-19 was massive. With outbreaks resulting in the regular closure of care centres, my parents were left without respite or day assistance for over a year. This situation was heightened by the crumbling state of social services in Northern Ireland and a, till recently, dysfunctional government. Despite these hurdles, they have endeavored to care for my brother at home, constantly grappling for day care, respite, bus services, nappies and equipment. Ten years ago they constructed a home with unique features to accommodate care workers. However, currently, there are no workers available for this role.
Some aspects have seen improvements over time, such as amplified awareness and accessibility. The insensitive comments made earlier, like suggesting a miraculous cure for my brother’s disability in Lourdes, seem unimaginable now. It is also encouraging that support and counselling are now provided for siblings like me instead of just instructing us to appreciate our ‘blessing’. On the contrary, the availability of services and respite has drastically declined since his childhood, with no feasible long-term care solutions in sight. With both my parents having undergone surgery in the past six months, it’s clear they can’t endlessly look after him. The uncertainty of what lies ahead is quite intimidating.
My personal aspiration is for parents not to be obligated to devote their lives entirely to care for a severely disabled child. I also hope for considerable advancements in support and care facilities to ensure a diagnosis like my brother’s does not halt life for everyone involved.
Claire McGowan’s “This Could Be Us” is released by Corsair. Stay informed by listening to our Inside Politics Podcast for current discussions and critique. Receive our top news, insights and comments conveniently on your phone by registering for push alerts. Connect with The Irish Times on WhatsApp to remain updated.