Your Family

My parents paid a huge price in looking after my disabled brother. We have no idea what happens next

Disability should not have to mean life stops for everyone but my parents feel guilty taking any time off from looking after my brother

Claire McGowan: 'If I could hope for one thing it would be that parents are not required to spend their entire lives caring for a profoundly disabled child.' Photograph: Donna Ford

Claire McGowan
Sat Mar 9 2024 - 06:00

I used to say that the most significant event in my life took place before I can even remember – the birth of my brother, David, with profound disabilities. I was not quite two years old, so I only know what I’ve been told, but it was a time of great distress and upheaval that I don’t think I have ever quite recovered from.

In 1983 my parents were in their late 20s – my mother recently qualified as a doctor and my father working in a further education college. Both from Catholic families, they’d settled just north of the Border in south Down, outside Newry. They already had me, a healthy toddler, and no warning that anything might be wrong with their second child. But as soon as he was born it became clear something was not right. It seemed so unlikely he’d survive that he was baptised in the hospital, a tiny scrap of a baby. A while later, they were told he had a rare chromosomal disorder and would be severely disabled for his whole life, however long that might be.

I spent a lot of my childhood parroting that explanation back to people, tying my tongue around the word chromosomal, failing to have answers when people asked what the condition was called, before looking suspicious when I said it didn’t have a name. In fact, there are thousands of conditions like this, so rare that only one person in the world might have them. All it takes is for one piece of DNA to be misaligned, or inverted, or deleted. Most people know that Down syndrome results from an extra chromosome, so they ask if David’s condition is like that, and I have to explain how much more severe it is, even though he just has a small section of one piece of DNA inverted.

In the 1980s, we lived on the outskirts of a village, in a house that backed on to fields until a new estate grew up in the early 1990s. I acquired a sister, then another brother, both healthy. With four of us born within seven years, there was always someone crying or needing a nappy change, so the impact of David’s disability seemed less by then. As a child he was cute and doll-like, and could be pushed about in a normal buggy, often in a double with my sister or youngest brother. As the oldest, I learned quite early on that I would have to manage myself. We could get by with a normal car seat and a standard vehicle, though with four of us we needed the extra row of a Renault Savannah.

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My understanding of disability was very much shaped by my Catholic upbringing. Relatives and well-meaning strangers would sometimes tell us we were lucky, that our family had been blessed with an angel. Indeed, my parents were told this in the hospital after David’s birth. Growing up surrounded by tears, upset and pain, with my brother often stopping breathing and having terrifying seizures, I was bewildered by this attitude. When I went to convent school we were taught that God shapes all babies right from the moment of conception, so my brother being this way must have some deeper reason to it. I never believed that, seeing it as pro-life propaganda, and it’s probably what set me on a path to lapsing hard from religion.

The best way to describe David is like a newborn, but now one who shouts and can be violent towards himself with slaps or scratches

I spent a lot of time as a child fighting on behalf on my brother, noticing the stares we got when we took him out, from both children and adults who should have known better. Correcting ableist language is something I still have to do today. We didn’t know not to use the term “handicapped” back then, so “the wee handicapped boy” was a common way to describe him. Very little seemed set up for disabled people then – we’d go to cafes and there’d be nothing he could eat, or he would shout in public places and people would make fun of him, or someone without a badge would have parked in the disabled space, or there’d be needless stairs to drag his buggy, then his wheelchair, over.

You’d explain to family members that it wasn’t easy to bring him to events over a hundred miles away. I’d feel chastised when I tried to explain to new people the extent of his disabilities. This is something I still find: no matter how clear I am that he’s not able to do anything for himself, I still get asked if he can talk or walk. The best way to describe him is like a newborn, but now one who shouts and can be violent towards himself with slaps or scratches, who’s often in pain though he can’t tell us why, who if left in respite care for more than a few days refuses food and water. He almost died a few years ago while my parents had a week’s holiday; now they feel guilty taking any time off at all.

Claire McGowan: 'One thing we took for granted somewhat 30 years ago was the level of care and support available. Respite was fairly regular, and relatives were more willing and able to look after a small disabled child than the difficult adult he has become.'

One thing we took for granted somewhat 30 years ago was the level of care and support available. Respite was fairly regular, and relatives were more willing and able to look after a small disabled child than the difficult adult he has become. I have many issues with the Catholic Church, but they did provide care too, though I remember a nun at school pulling me out of class once to interrogate me on my home life and remind me how grateful I should be. We somehow muddled through for years, even with both parents working full-time and sometimes in the evenings too. We had a childminder – non-registered, as most people would not look after David – and he went to what was called “special school” during the day.

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We took him with us on family holidays, which were always in Ireland since he couldn’t go on a plane, and then my granny looked after him for a few weeks so we could go to America, twice. It feels crazy now that we were able to leave him for three full weeks – that seems unlikely to ever happen again with the cuts to care services. He also had several operations as a child, once being in a double-leg plaster cast for weeks to reset his hips. It was my job to make sure he didn’t move or hurt himself – no easy thing when he wouldn’t have understood what was happening, and I was only a kid myself.

Some things get better and some worse. Accessibility and awareness seem improved now, and I can’t imagine people coming out with the ignorant things they used to say in the past

Then, when he turned 19, and I was away at university, feeling terribly guilty about not being around to help, a crisis cropped up. David had to leave his school and it seemed doubtful anything would take its place. My parents discussed one of them giving up work for good, and the mood was extremely sombre and difficult. As it happened, he did get into adult day care, where he still goes most weekdays, and is collected and left home in a bus with very kind drivers. There’s no way my family ever could have coped without the dozens of care workers who devote their lives, for very little reward, to looking after disabled people. They should be paid and supported so much better because, like families who are willing do years of back-breaking care, they are the only things holding the system together. David’s needs have grown as he got older, and he now needs a an adapted bed, an adapted van for his wheelchair, a hoist, a wet room.

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Covid was the huge blow we weren’t expecting – my parents had no respite or day care for over a year, and since then it’s been very patchy, with centres closing down any time someone tests positive. Much of the available care has not come back, which is compounded by the absolute mess of Northern Irish social services and a, until now anyway, non-functioning government. Through all this my parents continue to care for him at home, always having to fight for respite, day care, bus services, nappies, equipment. About 10 years ago they built a new house with adaptations that would allow care workers to come in – but there is no one available to do this work.

Claire McGowan’s novel This Could Be Us is published in paperback by Corsair published in paperback

Some things get better and some worse. Accessibility and awareness seem improved now, and I can’t imagine people coming out with the ignorant things they used to say in the past, such as suggesting my brother could go to Lourdes for a “cure”. I’m told that siblings like me would also now have support and counselling, instead of just being told to be grateful for our blessing. But respite and services have very clearly got worse since he was a child, and there seem to be no long-term care solutions at all that would work. My parents have both had surgery in the last six months, so they can’t keep looking after him forever. But we have no idea what happens next, and that’s frightening.

If I could hope for one thing it would be that parents are not required to spend their entire lives caring for a profoundly disabled child, and for a huge improvement in care and support, so that a diagnosis like my brother’s doesn’t have to mean life stops for everyone.

This Could Be Us by Claire McGowan is published by Corsair

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