“Why did you take so many planes to get here?” asked my niece, who is four, blinking at me awkwardly as though she’d just happened upon an unconscious, jetlagged woman in the bedroom beside her own, which she had. I came home from Australia for several weeks this autumn. It was the longest period I’ve spent under the same roof as my niece and nephew since their births. “To visit you and Brother, of course,” I replied (she calls her two-year-old sibling “Brother”, as though she’s Hulk Hogan, or the two of them are navy seals who have witnessed horrors together, or 15th-century Benedictine monks).
Tom, also known as “Brother”, is like many two-year-old boys. (His name isn’t Tom but we’ll call him that here). He considers his mother to be quite literally the greatest and most interesting person who has ever lived. He has cornflower blue eyes and a decided distaste for socks, which he will tug off his feet in the time it takes you to reach for his shoes to put them on. He has, to quote Mr Darcy from Pride and Prejudice, “a passionate admiration and regard”, except it isn’t for Elizabeth Bennet but for blueberries. Tom can find a carelessly dropped blueberry within an eight-mile radius. If you give him the chance, he’ll put your entire nose directly into his mouth, so you’d best watch out if you pick him up. And of course you’ll want to pick him up because he smells like soap (or blueberries, depending on the time of day) and he’s almost always glad to see you. Particularly if you’re in the mood to make funny noises or to hang him upside down by his ankles for a moment, which I’ve discovered is an activity highly relevant to his interests.
He also isn’t like many two-year-old boys. He doesn’t walk or talk and has complex medical needs, having received a diagnosis of ADNP, also known as Helsmoortel-Van der Aa syndrome, this year. It’s a rare neurodevelopmental disorder that can affect motor skills and co-ordination, among other things. Children with ADNP can experience complex developmental, neurological and medical issues. In advocating for their son and waiting more than two years for a diagnosis, Tom’s parents – my brother and sister-in-law – have learned what it really means to have a child with special needs in Ireland. How little tolerance, enthusiasm and support there actually is for little children whose route to a fulfilled and dignified life is largely only impeded by our unwillingness to make space for them.
Tom has innovated around his physical limitations. Figured out ways to move without walking or crawling so that if you’re not careful he will have scooched himself under the couch and got himself stuck (possibly because he spotted a rogue blueberry under there) or rolled his way across the kitchen to grab his beloved singing sloth toy. He has a determined, problem-solving approach to life that most of us could learn from. He’ll steal your phone if you leave it within reach, and heaven help you if you have a rice cake, because now you don’t. Not any more. Outside the protective environment of his house, there is a country built for people who aren’t like Tom. A country that largely treats small girls and boys like him at best as afterthoughts and at worst as non-ideal departures from “the norm”. But my nephew is not a non-ideal person. He is a marvellous and unique individual who prefers not to wear socks and must conduct his life in a non-ideal context. That’s not on Tom, but on the rest of us.
When we think ahead for him, it’s not clear what the future will look like. It’s more complex than presuming he’ll follow the average trajectory. He isn’t average. He has much to contribute to Irish society but his ability to live a good, fulfilled and dignified life – to make his contribution like everyone else – is dependent upon the right supports existing for him to do that. It is dependent on us collectively valuing Tom and people like him – who can’t advocate for themselves – enough to foster an attitude that actively makes room for them. It’s dependent on us caring enough to make the Ireland outside Tom’s house and family a positive and viable environment in which he is invited to participate.
The philosopher Martha Nussbaum reminds us that dignity is not tied to a person’s functional capabilities, but to their potential to have a good life. That actualising this potential should not be possible solely for those who conform to the average. Empowering people with disabilities to exercise their agency, their freedom to move, think, choose and live according to their own potential demands innovative thinking and support so they can live with the dignity and autonomy that others enjoy by default. It demands more than a conception of what our existing system will allow such a person, or a laser focus on symptoms (such aslack of funding or political indolence) that really stem from a deeper and more concerning cultural distaste for difference.
In Ireland, we value conformity. It is central to the Irish political and social project, stemming from a time when uniformity around collective identity was a key tool in combatting imperialism and cultural erosion. That had its benefits. We live in the legacy of some of its drawbacks. You can’t wear a trench coat to the pub without your friends making Blade Runner references. We like people to fit in. We like to make it clear that we notice when they don’t, in both small, silly ways and larger, more serious ones. It’s a feature of our culture and for people like Tom, it has a higher cost than for the rest of us. Too many of us consider a little boy with special needs an inconvenience rather than cherishing and supporting who he is. We can’t generate the imagination and the openness to act – in our culture, or the policy and healthcare system that emerge from it – as though we really do want everyone to live a good, dignified life. Not according to the mean, but according to their potential. Tom is not the problem. It’s the rest of us.
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