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social media
From Twitter to Today discovered that the only way to get him

what he needed was to emphasise in the
endless paperwork just how “bad” he was
at everything – a failure and a danger to
himself and others.
When Stephen Unwin tweeted a photo of himself and his son, Parents revel in their children’s
he was stunned by the life-affirming responses and pithy achievements, but those of us with
learning-disabled children are forced to
messages of mock gloom – and found himself on Radio 4 do the opposite – focus on the things

they’re not good at and share, in crushing
detail, our anxieties about their future.
witter, as everyone who uses it “Awful sadness”, “Such dreadful hell” and The struggle for Joey tore chunks out of us
knows, is a cesspit: a place to get so on. I replied to each one with mock and such continuous negativity can be
Tshouted at by strangers and fight off sympathy: “Oh how awful”, “So grim”, soul destroying.
anonymous trolls. So imagine my surprise “Thoughts and prayers”, and suchlike.
when my jokey little tweet set off an For three frantic hours on Friday Creative anarchy
enormous wave of love, pride and the evening, I could hardly keep up. And, What is forgotten is just how creative,
very best in humanity. when I woke up on Saturday, it was still enjoyable and splendidly anarchic sharing
It was New Year’s Day. I was lying on the going strong. By Monday morning, I was a life with a learning-disabled person can
sofa with my 24-year-old son, Joey, and on the Today programme on Radio 4 be. Joey has had a hugely positive impact
we were giggling at one of our routine talking about what had happened and on our family.
jokes. I took a few selfies of us having a what I thought it meant. I could not be prouder of the influence
cuddle, was pleased with one of them and It was clear that Joey and I had he has had on his elder brother, Laurie,
tweeted it out with the simple, ironic struck a chord. Because families of and younger half-sister, Bea, who are much
message: “So terrible being the dad of a learning-disabled children are so often kinder, more intuitive and empathetic than
learning-disabled young man.” made to feel that their situation is deeply I ever was in my youth. Clever as they are,
I thought nothing more of it until I tragic, my tweet, I believe, encouraged they know that some things are more
returned to my phone and saw a steady them to show that they don’t just love important than being brainy.
stream of notifications: likes, comments their child to the moon and back – their Loving Joey is the easy bit. He’s no
and retweets. child has taught them more about life, tragedy. It’s fighting for his future
love and laughter than outsiders might that hurts.
Happy, ordinary things expect. And they wanted to express Parents of learning-disabled kids fight
I was especially struck by the hundreds of that publicly. like Trojans to get our children what they
pictures pouring in of families with a Joey, my second son, has severe deserve. But we’d gladly lay our weapons
learning-disabled relative doing happy, learning disabilities and intractable (if down if we could. We are driven by love
ordinary things – climbing mountains or medically managed) epilepsy. He has no – nothing else. There are challenges,
walking on a beach, bouncing on speech and communicates with a limited frustrations and griefs to navigate.
trampolines and posing in Christmas vocabulary of simple Makaton signs, But raising a learning-disabled child
pyjamas – all laughing, smiling and having pointing fingers and a golden smile. really isn’t an unremitting tragedy. A
infectious, glorious fun. He’s an endearing young man (I would particular mixture of pragmatic
Each carried its own pithy little message say that, wouldn’t I?) who, for the most acceptance, raucous laughter and undying
of mock gloom: “Another day of misery”, part, brings out the best in people. But love rings through our houses.
he requires constant This Twitter storm demonstrated that
care to manage the families don’t need “thoughts and
Stephen Unwin simplest of tasks. His prayers”. What we’re asking for is
@RoseUnwin
learning disabilities inclusion in all aspects of life and practical,
So terrible being the dad of a learning-disabled young are not to be high-quality and easily accessed support.
man. underestimated. Above all, we want society to embrace
When he was our kids as equals. As Joey’s then
young, the suggestion six-year-old sister once said to a friend
was sometimes made alarmed by his lack of spoken language:
that Joey must be a “You don’t have to be scared of Joey. He’s
“sadness” to us. just disabled.”
We constantly This life-affirming stream of beautiful
encountered tilted, photographs showed me that thousands of
concerned faces families with learning-disabled children are
of – dare I say it? determined to bear witness to the
– somewhat unquenchable, overflowing love they feel
manufactured for their children, however different,
sympathy, especially however ignored, however misunderstood.
from people whose It’s just possible that the big-hearted and
job it was to manage defiant response to my jokey little tweet
his future. In suggests that things might change.
the process, we It’s a moment of hope. n

26 Vol 34 No 4 | Summer 2021 Community Living www.cl-initiatives.co.uk