What's normal?
When faced with a curved ball after a textbook first pregnancy, Sue and Malcolm Blackwell found their own way through the confusing path of supporting their children to follow their dreams encouraging them to fulfil their unique potential.
Their daughter Jen has Down’s syndrome.
Choosing not to “put her in a home and forget about her”, as one health professional advised a few weeks after Jen’s birth, they’ve discovered it’s possible for each member of the family to live extraordinary lives, achieving things they never thought were possible by taking one step at a time.
Naturally shy and reclusive Sue, with Malcolm working away from home, found strength and resourcefulness to challenge what didn’t feel right for them. In a world of systems and checklists that doesn’t see people as unique individuals with talents and dreams, excited to fulfil their purpose in life, Sue and Malcolm show how thinking differently can turn things upside down and unlock doors that were previously hidden from view.
'Dream, Believe, Achieve'
The Art of the Possible book shares that with love at the foundation of all we do, we can embrace every person so they know they matter in our family, our community and our world.
Dreams really do come true.
With the right support to tap into our unique potential everyone can contribute.
We're all in this together
We all know the phrase, thought to be an African proverb, “it takes a
village to raise a child”. We’re all invited to be part of the village, a
compassionate community of people supporting each other to grow and
develop; to be loved and to love; to watch on with pride and delight as we
see each person rise to their full potential.
We also know that not everyone feels supported by the village. Many feel
like an outsider, some from a very early age in their life; some feel
pushed out as they grow up. Some of us feel like we’ve never fitted in
and never will.
My village is your village. What we do matters. We’re all in this together
and we can change things for the better for everyone.
Thoughts, articles and conversations:
Sharing and impacting in Europe
We’ve just returned back to the UK buoyed up by a fabulous experience at #EAMHID25 in Ghent where Jen and the DanceSyndrome dancers made a significant contribution. Not only did they have an opportunity to deliver a solicited symposium (presentation) in conjunction with the NHS and a workshop ‘Embracing Inclusivity’, but they were given license to share their passion and
25th September 2025
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Inclusion Awareness Week – Now is the time
Inclusion rocks! Inclusion is key to happiness. Most of us have experienced exclusion at some time in our lives. Just imagine if that was the norm, if you were routinely left out. How would you feel? What would you have to live for? Why get up in the morning? Now is the time to stop paying lip service to EDI.
17th September 2025
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A ‘service user’ summer
How was it for you? Your summer holiday that is. Hopefully you’re restored, refreshed, relaxed, reinvigorated. It’s important isn’t it. That break we all value so much, plan ahead of time, secure the dates in the work calendar, decide whether we prefer to go alone, with family or friends. As autonomous adults we can choose where, when, the budget, and
4th September 2025
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In Jen’s own words
I always wanted to be a dancer. I’ve always danced. It’s in my blood. Dance is how I communicate best. I’m Jen and I’m a dancer. I am co-founder and director of my charity DanceSyndrome. I’m also proud to be a NAPA Ambassador helping others to be active in whatever way is right for them. I trained as a community
7th July 2025
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Dear Parent
If you don’t have a child with learning disabilities, please read on to understand more. This is our reality. If like me you do have an offspring with learning disabilities you’ll experience life very differently to the rest of society. Dear Parent, How are you doing today? If we haven’t met before I’m Jen’s mum, occasionally known as Sue. Today
19th June 2025
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Do you see me and my vulnerabilities
I’m always mindful when writing as a carer of 43 years that I’ve had it relatively easy. Jen has been blessed with good health, so our challenges have mostly been intellectually, socially and emotionally focused. The lot of a carer is fraught with uncertainty and often significant financial sacrifice. We find ourselves needing eyes in the back of our heads
16th June 2025
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We have no idea what’s possible
30 years ago, May 1995, Jen aged 13 lay on a blanket under the pear tree in the garden whilst we planted an orchard. She was incapable of doing anything else. Jen had already been receiving medical intervention for 3 weeks. 1 day later she was in hospital and we were advised that she was terminally ill. At best she
28th May 2025
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Inclusion in Practice
“Inclusive education is a national priority—and a shared responsibility.” says Tom Rees, Chair of the DfE’s Expert Advisory Group for Inclusion. We agree! We’ve submitted the following to the enquiry, and have offered our support to engage further happy to share all we’ve learnt from our personal experiences: Social change is imperative if we are to create a fairer, more
8th May 2025
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This Down Syndrome Awareness Week 2025
Spot the dancers a mile off! A meeting of hearts and minds through dance, sparkles, smiles, two honorary Doctors of Arts from the University of Salford in 2024 communicate through their shared passion. From the moment we arrived at the prestigious Cholmondley Room Jen was on the look out for Dr Ria Meera Munshi. Her excitement was palpable. Yet again
27th March 2025
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Support must be fit for purpose – begin by listening
In all parts of our lives we find systems which are meant to be helpful. Support to navigate a certain aspect or point in time. Everyone accepts that ‘the system’ is broken. But until we listen intelligently to individuals, people with learning disabilities will continue to remain invisible. If we value everybody, truly believe in equity and equality of opportunity,
21st March 2025
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Accelerate Action – it’s possible if we choose to act differently
The theme Accelerate Action coming from International Women’s Day 2025 is a powerful one. But only if we then take action on what we believe needs to change. I’ve had a wonderful couple of weeks capturing some conversations with some amazing women with different life experiences, cultures and stories from my own. But our commonality of wanting the world to
8th March 2025
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Solving the SEND Crisis – our opinions and evidence
The UK Government Education Committee inquiry “will focus on how to achieve both short term stability and long-term sustainability for the SEND system to improve experiences and outcomes for children and young people.” January 2025. We have submitted written evidence as parents of a 43 year old daughter with Down’s syndrome and feel that opening up the conversations, encouraging and
14th February 2025
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Eternal Opportunism
I have a problem. I have eternal opportunism written into my DNA. My glass is (almost) always half full, because if half empty I’d have walked off the end of that metaphorical short plank a long long time ago; or as Malcolm says, it keeps the men in white coats at bay. So how about you? Do you have clear
17th January 2025
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Thank you for being part of extraordinary lives
We have so much to give thanks for. So many people over the years have said “yes”, or “I don’t know but have you tried…” and supported our ambition that Jen born with Down’s syndrome, and others like her to be treated like any other human being – having the right support and opportunities to pursue their dreams and follow
21st December 2024
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The week that was spreading joy and happiness
The week that was! The precursor to the eventful week anticipated! Life with and for Jen is full on in so many wonderful ways no one could ever have foreseen. As a dancer Jen has made her mark. As a daughter, sister, aunt, niece, cousin, friend she is loved. As a leader, a flagbearer, a multi-award winner, a role model,
2nd December 2024
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Leaders from unexpected places
Awards raise profile and awareness. This is our first exposure on a global stage making the largest minority in society more visible creating increased awareness for those in the room, opening eyes to the marginalized. Intellectual disability affects people from all walks of life across the world but all too often they are hidden from view rather than celebrated as
21st October 2024
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True inclusion is endemic within your practice
Inclusion, or rather the lack of it as a given has been the challenge of our lives. So much lip service paid, so much time, talk and energy poured into it, so much money spent, so many claims made, about something which in essence is so simple; in practice can be daunting. But is it of necessity such a huge
30th September 2024
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Holidaying Blackwell style
What a beautiful summer at the end of a beautiful year from nomadics living our lives of choice. I feel like the luckiest person alive as Malcolm and I celebrate 46 years of marriage. Pity about the weather! Depression after depression after depression this August 2024, but the right place for us to be is out on the water. Otherwise
13th September 2024
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Thought Leader Gold Award
Wow! I’m still stunned two weeks on to have been recognised as the Gold Award winner by the Stevie International Business Awards. On occasion awards appear out of the ether. When we enter awards, for DanceSyndrome or for Jen, it’s because we believe that sharing what we do with a wider audience enables and inspires other people to know and
26th August 2024
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Dr (h.c.) Jen Blackwell BEM
Who would have thought it was possible for someone like Jen, with a profound intellectual disability, would have been honoured with an Honorary Doctorate for her services to dance? It’s been an incredible few months since we heard, absorbed the enormity of this honour from Salford University, and then attended Jen’s graduation ceremony in July 2024. The whole experience has
22nd August 2024
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Do you see me
For Learning Disability Awareness Week 2024 this question, “Do you see me?” posed by Mencap is so deep and so profound, whilst simultaneously distressing, disappointing, and painful that it even merits consideration. It is a sad travesty of the 21st century, an inditement of the way society has stood idly by as people who happen to be learning disabled or
21st June 2024
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We are all different
Just a few days ago Malcolm and I were camping with our trusty ‘big’ car tent (top left) by ourselves as it turned out, soaking up the glorious view over Lostwithiel in Devon. Whilst Jen, was loving living in style for a couple of days at the fancy Rubens Hotel, Buckingham Palace Road. She loves the whole experience of being
7th June 2024
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Blowing in the wind
There are times in life you feel in control, and others where you feel powerless, inconsequential, insignificant, incapable. My nature is to be positive, driven, energetic, but just now I’m riding the roller coaster of grief after my mum passed away a few weeks ago. It’s difficult to focus. You think you’re on top of it, putting on your ‘can
28th May 2024
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Friendships – good for our mental health
Friendship is something most of us take for granted. Even though I’m naturally shy and introverted, and didn’t easily make friends in the playground, preferring my own company, I now have a wide circle of friends and acquaintances around the world. Some I don’t see or speak to often, but that doesn’t stop us from picking up where we left
16th May 2024
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Changing lives one person at a time
When the idea for gathering dancers with and without learning disabilities together to learn skills, create choreography and support each other to develop it was because nothing existed to support our daughter Jen to do what she wanted to do – Dance. Jen, with a her support team at that time, came up with idea in her bedroom, then put
2nd May 2024
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Express Day 24 review
Dodging the cloud bursts we arrived at Blackburn Empire Theatre excited to watch Express 24, the annual show of the multi-faceted talented dance charity, DanceSyndrome. The Sunken Forest was an opportunity to put aside the cares of the world, allow yourself to be enveloped by finely wrought, enthralling, enchanting spell binding ballet. The dance was absorbing as dancers shared their
18th April 2024
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Travel offers opportunity to new adventures
Travel – And why not? For anyone, everyone. Even those who are deemed not to be able to handle change well. Without travel doors remain closed, opportunities are denied, adventures not experienced, face to face connections have no chance to flourish. And so it’s been these past few 4 days. 4,640 miles 9 hrs flight, + 8 hrs transfer and airport +
11th April 2024
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Working together
It’s fascinating what the two words, “working together” conjure up isn’t it? Does it really mean two or more people joining together in an equitable relationship to create something? Or does it mean that someone is wanting to do something for you that really only benefits them or their organisation, but because it may be seen as “helpful” it can
8th April 2024
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Is every relationship equitable?
In my experience the simple answer is no. But should every relationship always be equitable? I believe every person has the right to be seen and heard in the language appropriate to them, with every voice and person of whatever age, ability or background, being able to contribute their thoughts, ideas fairly and equally with those they are in relationship
28th March 2024
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Ending stereotypes
We don’t care that Jen has Down’s syndrome. Jen is Jen and that’s the bottom line. For Jen, celebrating all those around the world with an extra chromosome, or Trisomy 21 is important. For Jen, it’s a celebration of her and people like her being recognized and valued for who they are. We have strict instructions to wear odd socks
21st March 2024
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The joy of inclusion
The joy of inclusion is something that can’t be explained. Rather it has to be experienced firsthand. It’s interesting to consider it from various angles. Here it is from the perspective of one perceptive visitor to the DanceSyndrome space recently: One thing was that I didn’t know how I would feel entering their space. I wondered if I might feel
8th March 2024
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A box of books arrived
A box just arrived……..a box of books. Yes I’d ordered them, and yes, they’re all the same, but seeing your words in print in a proper book for the very first time is a proud moment. Really? Me? Why me? However did that happen? Who’d have thought? But then who’d have thought that the introverted shy 18 year old musician
6th March 2024
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Inclusion is fundamental to living
Asking me to write about inclusion is like asking me to write about breathing. Inclusion is fundamental to living. Isn’t it! It’s normal for us humans to embrace others with a friendly smile, a hello, hug, handshake or wave – people you encounter everyday in your family, your community, on the bus, at the shops, at your school/college/work, or passing
29th February 2024
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