Why do we see the label before the person?
Why do we set the ceiling before we've even looked up?
Why is extraordinary still the exception — when it was always meant to be everyone's starting point?
Forty-four years ago, the Blackwells were told to put their daughter in a home and forget about her. They didn't.
Beyond Extraordinary: Who Are You Missing? is not a story about overcoming disability. It is a challenge to every person who has ever walked past someone without seeing them — never knowing their potential, what they could offer, what the world loses by not finding out.
Accepting 'good enough' is the enemy of extraordinary.
Sue Blackwell writes as someone who ran out of patience for a world that calls "good enough" an answer — when it has never, for a single person, been enough. With co-author Tracey-Jane Hughes, she sets out a 12-point Crusade for Social Change — drawing on the life of her daughter Jen, a British Empire Medal holder, honorary doctorate recipient and multi-award-winning international dance leader, who was born with Down syndrome into a world that expected her to live a limited life.
Together with the stories of others they've witnessed, and DanceSyndrome — the charity they founded that doesn't serve people written off by society, but is led by them — this book shows what becomes possible when extraordinary is the expectation, not the exception. They don't simply receive. They lead.
The book is the invitation to build from the foundation of love: in your home, in your work, in your heart. In your life.
Who are you missing?
The person who could change your room, your team, your community is already there. Right in front of you. This book asks you to see them and take the next step.
Thoughts, articles and conversations:
Inclusion Leader Awards 2026
“Put her in a home and forget about her.” That’s what we were told forty-four years ago, five hours after Jen was born. All Malcolm and I wanted was a life for our daughter that didn’t look like the one society had already written for her. We wanted her to live fully — whatever that turned out to mean. We
18th September 2026
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Sue
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Dare to Let Go of the Bank
How learning disability led us to Colorado is a story that begins with possibility, friendship, ski slopes, and a daughter called Jen. But this particular chapter starts with three kayaks and a step ladder… A paddle for three in 3 kayaks certainly appealed. Why not? What could be better on a scorching day in the Rockies? What we hadn’t appreciated
18th August 2026
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Sue
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Express yourself – in Jen’s own words
It’s been a busy few months! I really enjoyed meeting and dancing with people who we usually see online when they join DanceSyndrome dance sessions at the Encore weekend in April because they don’t live near Preston. We created dance with each other as one big dancing family. We were all very happy. Attending the Board meeting in April with
10th July 2026
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Tracey-Jane Hughes
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‘I Need Personal Time and Personal Space’ is true for everyone
In a bit of a bind, my daughter Jen — who has a learning disability — declared ‘I need personal time and personal space’. True for all of us! We’ve all been there. It’s all too easy to be overwhelmed by one element of our lives which rears its head at every waking moment. E-mails and social media are perhaps
3rd July 2026
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Sue
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You’re Missing a Trick: The Truth About Inclusion and Learning Disabilities
Things Need to Change Do you see me? We’re all human beings. So often people with learning disabilities are invisible in full sight. We must always speak with and to, not around or over or just to the carer — never referencing ‘he’ or ‘she’ who is standing right there in front of you. We are all individuals. We all
26th June 2026
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Sue
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Do You See Me? Learning Disability Awareness Week 2026
Learning Disability Awareness Week always gives me pause. Not because I need reminding — Jen has made sure of that for the last 44 years — but because it creates a moment in the calendar where the world asks us to stop, if only briefly, to ask some important questions. This year’s theme: Do you See me. Do you Hear
24th June 2026
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Sue
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Learning Disability Leadership in Action
What happens when you believe in someone? Can people with learning disabilities take on leadership roles? DanceSyndrome’s experience over 17 years says yes — unequivocally — when the right conditions are in place. Peter Pamphlett’s journey is one of the clearest examples of what learning disability leadership looks like when it’s genuinely supported to grow. There is something we don’t
23rd June 2026
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Sue
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The Making of Us: 45 Years Defined by Jen — A Down’s Syndrome Family Story
In the UK Carers week and Learning Disability Awareness Week are celebrated back to back in ‘blazing’ June. Both resonate so powerfully with me and my life defined by Jen, our daughter who arrived almost 45 years ago with the unexpected addition of Down’s syndrome. We all know that becoming a parent changes your life for ever. Little did we
13th June 2026
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Sue
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Atlantic Odyssey day 27-29
Day 27 10pm. Another day in paradise draws to a close. The clock is ticking as we now have only 159 miles to run to Tazacorte – that’s a little over 24 hours which is slightly problematic as I refuse to go within 10 miles of the coast in the dark, and actually would prefer to be 30 miles off.
29th May 2026
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Sue
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Atlantic Odyssey day 26
Day 26 And more tales from the night watch! What a glorious day, even though we motored all day long. Blue sky, warm sunshine, not wearing thermals! We must be heading south. The engine purred at 1600 revs and even ran a little cooler over time pushing us forward over a flat calm sea at 6 knots without a murmur.
27th May 2026
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Sue
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Atlantic Odyssey day 23 – 25
Day 23 After a night on the tiles, much pummelling and cajoling of possessions into their respective holdalls, the bleary eyed Crew have left for the airport. They leave a real hole having been such good company; good for each other and good for us, able and willing to jump to whatever the ask or the need. Still a few
26th May 2026
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Sue
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Atlantic Odyssey 2 – Crew signing out
Day 22 – The Crew – Part 5 – Signing off! Avast me hearties! Here we are, another 4 days on. Docked in the Azores and time for the ships company to disband as we The Crew hop off leaving Sukama with Malcolm and Sue to continue her quest South! While honoured to be labelled as the A-team when it
26th May 2026
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Sue
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Atlantic Odyssey 2 day 20
Day 20 Difficult to believe, we’ll have been at sea for three weeks by the time we make landfall in the Azores tomorrow (Thursday). Even more strange given that we were heading to the Canaries, but weather said no. Our whole lives have been controlled by the ocean and the sea state, the currents, the wind and weather systems, the
21st May 2026
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Sue
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Atlantic Odyssey 2 day 19
Day 19 It’s 5.10pm and 3 out of 4 of us are horizontal! It’s been one of those days! Winds up, swell is causing 3-4 metre seas coming from various points behind the beam, so confused seas and the occasional pasting on the hull cresting the coach roof and making us quietly smile in a deja vue sort of way!
21st May 2026
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Sue
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Atlantic Odyssey 2 day 18
Day 18 We’re back! The fourth Crew edition of our swashbuckling adventure across the pond. So what’s been happening! Well, it seems we managed to extract an entry out of Malcolm! Maybe this Crew intervention thing is catching! It at least appears to have made a positive impact aboard! The more observant among you however, will have realised, it is
19th May 2026
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Sue
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Atlantic Odyssey 2 day 17
18 May 2026 at 10:12:52 BST Day 17 It’s been an awesome day by any standards. We’re rolling down the trades with much rolling side to side still with minimal winds demanding careful movement around Sukama whilst engaged in frenetic activity whether interrogating the photos of the day, working on a laptop, playing suduko or enjoying a convivial beer at
18th May 2026
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Sue
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Atlantic Odyssey 2 day 15 – 16
16 May 2026 at 12:56:52 BST Day 15 8pm Sukama time – GMT -4 having marked another Friday in the traditional Blackwell manner with the close harmonies, floating trebles and reverberating bass notes of Lucid enhanced by the saloon speakers. Cheers all! Trust you enjoyed the trusty crew’s blog. They’re having a blast creating it, and are careful to never
18th May 2026
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Sue
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Atlantic Odyssey 2 day 14
Day 14 – The Crew – Part 3 – The Takeover. Welcome all landlubbers to another interruption in your normal Sukama broadcast, brought to you by, The Crew! In today’s edition we have changing plans and The Crew takeover. For those readings Sue’s normal reports some of this you will already know but maybe with a different perspective! We have
16th May 2026
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Sue
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Atlantic Odyssey 2 days 11 – 13
12 May 2026 at 10:59:58 BST Day 11 The good ship Sukama sallies ever eastwards into the gloom at the end of the day in spite of the bedraggled scallywags who came along for the ride. Mostly they are controllable but once in a while they break out of their box and get up to mischief. I accept that we
14th May 2026
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Sue
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Why inclusion matters to parents of children with learning disabilities
Parents of children with learning disabilities experience many closed doors when searching for activities to support their child’s development. Welcoming open doors, people who care and listen to the individual and family needs are the foundation for inclusive activity providers. As a family with one member having a learning disability we are well aware of the importance of different activities
12th May 2026
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Sue
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Atlantic Odyssey 2 day 10
11 May 2026 at 11:16:14 BST Day 10 – The Crew. Part 2 Ahoy ye! Another 4 days on and high time for another takeover by the wee scallywags… The Crew. I’m sure you are all curious to hear what tales of the high seas have filled the last few days…. The odd insight to sailing and amusement that may
11th May 2026
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Sue
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Atlantic Odyssey 2 day 7-9
8 May 2026 16:50 GMT Day 7 Trust you enjoyed the interlude from the subversive imposters otherwise known as the The Crew. They do most certainly earn their keep in many and varied ways keeping us on our toes, asking questions such as ‘which line’ when asked to tension the kicker with nothing by that name – ‘so that’ll be
11th May 2026
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Sue
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Atlantic Odyssey 2 day 6
7 May 2026 at 09:57:35 BST Day 6 – brought to you by… the crew It’s Sue’s day off so thought it would be fitting for today’s episode to be brought to you by the rest of us great unwashed, the rabble that lies beneath yes, that is us… The Crew…. For those used to Sue’s writing tones this might
8th May 2026
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Sue
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Atlantic Odyssey 2 days 4 – 5
5 May 2026 at 14:38:44 BST Day 4 It’s a slow day at the office where I find myself musing on food……… I’d never really given it the time of day before, but onboard in calm conditions it’s brought home to me that there are so many steps between procuring the food to eating the food. We stocked up to
6th May 2026
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Sue
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Atlantic Odyssey 2 – we’ve made a start
May 1st. Day 1 again! Today is May 1st 2026. This is a portentous day in my calendar as it marks the 2nd anniversary of my mum’s passing when all 4 of her children were gathered around her bed to say goodbye. It was a moment of total solidarity as we jointly comforted each other sorry to see her go,
5th May 2026
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Sue
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Is this the single largest inexcusable travesty of the 21st Century?
Dear Jo Public Is this the single largest inexcusable travesty of the 21st Century? What do you know, or choose to know? Do you care? I live in a world where injustices are metered out as commonplace where inequalities are the accepted norm, where people like my daughter Jen are unknown and unseen, invisible in full sight. In my world
23rd April 2026
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Sue
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Connecting through dance
It’s been a busy few months with my family and my dancing family. I am very proud of all we’ve done so far this year. It’s been very exciting. After my Mum and Dad sailed across the Atlantic on their yacht Sukama in January, my lead support and Fire Sister Donna and I flew to meet them in Tampa Bay,
16th April 2026
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Sue
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Championing social change
I’m honoured to be recognised as a finalist for “20 years a Social Enterprise Champion” in Selnet Ltd awards, and to have been nominated for the SMK Lifetime Achievement award. I have always championed social change, challenging assumptions and adding my voice and support wherever I can – as a naturally shy introvert that’s been quite something! I believe when
8th April 2026
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Sue
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The joy of life on Sukama
After our whirlwind week in the UK visiting Malcolm’s Mum Jean and finding her in remarkably fine spirits, a couple of powerful DanceSyndrome sessions connecting with each other in person and other organisations in our dance world including our partners from Japan, and playing catch up on various fronts, we were happy to be heading back to Sukama. UK, Antigua,
1st April 2026
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Sue
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Together against loneliness
With an important caveat. All views are personal and formed over 70 years of living, 44 with Jen, who today presents as her most fulfilled self ever. Let’s consider the work/life balance for all of us. What works best – for you, for people you know, for your family members, your loved ones, for people with learning disabilities? And how
21st March 2026
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Sue
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Humanity rising – the power of love
These past couple of weeks have been amazing, a microcosm of our world in theory and in practice. We have embraced risk and opportunity, we have committed to each other and travelled the miles, inspired and impacted unsuspecting others, and opened doors to the future for DanceSyndrome with Jen seen, heard, valued and respected communicating through her language of dance.
7th March 2026
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Sue
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The vibrancy of life being lived
The stifling heat in Antigua greeted my sister (Paul’s Mum), Merie two weeks ago. It has been pure joy to hear her excitement as she witnesses the next unexpected and revels in the numerous offbeat opportunities presenting. I am thrilled that we are able to make new memories with someone so dear to me, someone who I only came to know
20th February 2026
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Sue
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DanceSyndrome 17 years on
Thank you for noticing and for your congratulations! Can it really be 17 years since we took those first faltering steps towards the birth of DanceSyndrome? Like so many decisions it was driven by necessity. Jen’s world was crumbling around her and the frustration of her aspirations not being recognized just because she has a learning disability was too much
12th February 2026
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Sue
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