A book full of heart, warmth, and uncomfortable truths. The author explains in an afterword that this was inspired by one of her own sisters, a twin who has cerebral palsy and autism, and by her parents who did not take their doctor’s advice to institutionalise her and concentrate instead on the author and the other twin. It seems obvious to me that Sweeney knows whereof she writes!
Edie Maloney is the similarly afflicted twin while Maeve is the ‘normal’ one who dotes on her, as do her parents and their friends. Nobody knows if the girls were identical except for the extra chromosome. Edie is clumsy, loud, delightful, difficult, and child-like. She can sing and shouts out verses and phrases.
“Edith Maloney sings like a star!”
“What noise does a horse make? Home, James, and don’t spare the horses. Edith Mary Maloney, Sea View Lodge, 31 Marine Road West.”
Nearly 80 now, Maeve reminisces, conversing with Edie in her head. She goes back and forth between today and their youth, when their parents ran a holiday boarding house, Sea View Lodge.
“ ‘Don’t you and Maeve both look snazzy,' Dad tells you. ‘My beautiful waifs and strays.’”
“My waifs and strays are the cleverest and most beautiful twins in the seven seas.”
Maeve now runs the lodge, a favourite of disabled visitors, and some of the staff have disabilities. A singer from "Aspy Fella A Capella” greets a startled guest, while Steph manages the front desk and check-ins. Maeve remembers:
“Steph could almost be mistaken for one of those poor Chinese cockle-pickers who perished on our sands. But, not long after her birth, her mum and dad had been on the verge of tears when I’d called Steph a Mongoloid. I’d taken care never again to say it out loud although I still found it a lovely word—full of horses journeying across the steppes. I couldn’t think why the likes of Trish and Dave preferred to lumber their child with a syndrome; why they preferred to honour Doctor Down, who shut people away in an asylum.”
Maeve has admirers, and they accept and include Edie, but eventually government services begin to intervene to consider appropriate care. A doctor assesses Edie.
“As he examines you, I see him register your crooked teeth, your wonky toes and unshaven armpits. He does not seem to notice the length of your coppery eyelashes; your perfect earlobes, soft as rabbit-down; the arch of your eyebrows; your fulsome lips. He does not see my twin. The girl who laughs and jokes and sings; a girl who is stubborn and fearsome and strong.”
Jump to “today”, and we find elderly Maeve dealing with the government regarding Steph and Len, another Downs Syndrome son of friends, who does gardening at the Sea View Lodge and is sweet on Steph. Well, they’re sweet on each other, which has begun raising eyebrows and questions.
The back and forth, the comparison between then and now and the various personalities, parents, and carers is sensitively handled. We can see Maeve’s blindness to the truth of her situation long before she does, and for me, the discussion of her young love-life and its repercussions into her old age seemed repetitive and unnecessarily long. It got a bit schmaltzy, if I can use that old term, but it was real. Her pain was her pain, and we do feel for her.
The fear of government support services and institutions is also very real, and many young people with disabilities are still just lumped together with anyone needing care, no matter what age or level of mental capacity.
I’d like to think that we’ll get better at it one day. Thanks to NetGalley and Legend Press for an advanced copy from which I’ve quoted, so some quotations may have changed. And thanks to the author for a lovely book which I hope opens some government eyes.