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

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

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

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

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

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

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.

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.

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

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

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

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!

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

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

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

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

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

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

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

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

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

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

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,

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

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,

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

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,

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

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.

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

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

I shall always remember the very first time we visited and fell in love with Guernsey.  Aft clambering over rocks we were resting and admiring the view from the alluring coast path, Jen gurgling happily in a kangaroo carrier as Malcolm and I chatted quietly smitten by the beauty of our surroundings and the profundity of the moment as we

Thank you to every person who has journeyed with us and alongside us.  We’ve really appreciated feeling the fellowship of all who have joined us these past few weeks.  But how to do justice to this experience of a lifetime? Superlatives hardly cut it – incredible, unbelievable, stupendous, bigger, biggest ever seen, awesome, whilst in and amongst we experience bikini