DanceSyndrome with Sue Blackwell (Ep. 3)

Jen and Sue Blackwell

DanceSyndrome with Sue Blackwell Universal Learning with Saj Mohammad

In this week's edition of Universal Learning, I’m talking to Sue Blackwell, who co-founded the charity DanceSyndrome with her daughter Jen. Jen has Down’s Syndrome and DanceSyndrome’s mission is to empower learning-disabled individuals like Jen through inclusive dance classes and other activities. We talk about the impact of discovering that your newborn baby has Down's Syndrome, the challenges Jen's family faced to provide her with a nurturing education, and how DanceSyndrome was founded through necessity as nothing else like it really existed at the time.  You can find DanceSyndrome on the web at Music: Sinara by Blear Moon, licensed under Creative Commons (CC BY-NC). Sound FX: Soft Blip E Major by New Age Soup via Freesounds, licensed under Creative Commons (CC BY). Visit for more information. Subscribe to Universal Learning at

Please Note: This transcript has been slightly edited to improve readability.

Saj Mohammad: In this series, I’ll be talking to professionals inside and outside education, as well as parents, carers, and learners themselves about their experiences of inclusive practice.

I’m on a mission to discover as much as possible about inclusion, because I’ve been a learning support practitioner for over six years and I’ve come to realise that many of the adjustments we make for students with additional needs could benefit all learners. For example, making things easy to read helps dyslexic students, while using clear language can benefit autistic learners.  So, shouldn’t inclusive practice be part of our normal routine when planning teaching, learning, and assessment?

In an ideal world, I’d like educators to stop thinking about inclusive practices as another chore to be added to an ever-expanding workload. In actual fact, I believe that inclusive practice can ultimately make life easier by making learning more accessible for all of our students.

In this edition of Universal Learning, I’m talking to Sue Blackwell, who co-founded the charity DanceSyndrome with her daughter Jen. Jen has Down’s Syndrome and DanceSyndrome’s mission is to empower learning-disabled individuals like Jen through inclusive dance classes and other activities. It was founded though necessity because from an early age, Jen wanted to dance and as she entered adulthood, she struggled to find a truly inclusive dance group that met people’s individual needs.

We begin talking about the time of Jen’s birth in the early 1980’s, when amniocentesis was not offered to younger parents. Sue talks about the impact of hearing within hours of Jen’s birth that medics suspected she had Down’s Syndrome and having to wait days before it could be formally confirmed through testing.

At that time, there was also little in the way of the support networks that exist now, and Sue also talks about how she and Malcolm had to depend on themselves to research and investigate interventions that would help to nurture Jen’s development. We also talk about how professionals had very fixed ideas about what Jen’s future might be like and the challenges of finding the right education for her.

We then move onto the circumstances behind the founding of the DanceSyndrome charity. As Jen transitioned into adulthood, it was clear to Sue and Malcolm that Jen wanted to be a dancer. But their experiences of groups in the community that offered dance classes to learning disabled people led them to realise that none of these groups really catered for Jen’s needs.

After ten frustrating years in the wilderness, this led to Sue and Jen to found DanceSyndrome as a charity. This ultimately changed Jen’s life for the better by providing her with a vocation as a dance leader and enabling her to live much more independently. DanceSyndrome also offers employment opportunities to many other learning disabled people.

We conclude our conversation with Sue giving her advice to new parents and carers of children with Down’s Syndrome. She also has advice for professionals who work with learning disabled people about seeing them not as a problem, but rather as an asset and with the right encouragement, a talent.

I certainly think that in education, we don’t always listen to the voices of the parents and carers of disabled children enough, and I am a firm believer in the idea of co-production. In other words, that educators, parents, and carers should work together collaboratively in the best interests of children and young people. Co-production is certainly a topic that I would love to talk about more in-depth in a future edition.

Speaking of future editions, I am planning to answer any questions that listeners might have about inclusion in an upcoming episode. So do feel free to get in touch with your questions via our website at

Now, this interview was recorded using Zoom and the quality is not always the best. However, you can read a transcript of this episode on our website where you can also find links relating to each episode to help you discover how you can put inclusion into practice for all of your learners.

It was a real honour and a pleasure to speak to Sue and get a perspective on inclusion from a parent’s point of view. I hope you enjoy listening to our conversation.

Sue Blackwell: Hi,my name is Sue Blackwell and I am delighted to be here. The reason I’m here is because of my daughter Jen.

Jen is a dancer. She is the reason that DanceSyndrome exists. DanceSyndrome is a charity which is led by dancers with learning disabilities. It works inclusively and enables everybody to have opportunities to develop themselves through dance.

Saj: So I believe you met your husband at University. So what was life like before you found out that you were pregnant with Jen?

Sue: Malcolm and I actually met at school so we go back a long way.We went to universities in different cities, but our relationship flourished throughout all of that time. I am a musician by training, a classical musician and was working in a semi professional capacity, which I continued to do up until I was 50, so that was quite long standing. I was pregnant with Jen when I was 26 and we had not an inkling that amything was out of the norm until Jen was actually born, so it was an absolute surprise to us at that juncture. Five hours from her birth, we were told that things might not be quite as we thought they were.

Saj: How did that feel when you when you got that news? I’m assuming that you were feeling elated after the birth. But then, how you feel?

Sue: Gosh, I wish I could say that. I thought the bottom had dropped out of my world. I just felt as though the rug has been pulled from underneath me. I was just falling and I had no idea how I felt I was. I was in freefall really. All I had ever said throughout pregnancy was that I wanted my child to be healthy and here I am presented with a child, who has disabilities. But I had not a clue as to what it meant. I did not know what Down syndrome was. I asked the medics, if Jen would be able to walk. I just had no inkling whatsoever of what I was looking at which is why I suppose it felt like freefall.

And I felt I had to tell everybody who came along and said how wonderful and bonnie and beautiful my baby was, I had to say, but she has Down syndrome. But I didn’t know what I was telling them, accepting that it was a big but that I had not a clue about.

Saj: So just to clue in people listening, what sort of time period was this when Jen was born?

Sue: Jen was born in 1981, which was prior to amniocentesis being something which pregnant mums were offered as a matter of course. It was offered to older mothers, but not at all to people who are younger.

Saj: So when the medics gave you this news, were able to point you in the direction of any organisations that were were able to support you or help you in any way?

Sue: I so remember those first few days where actually albeit that they did know that then had Down syndrome, they could not tell us that until they done the genetic testing, which is presumably their protocol. So we were left grasping at the possibility that she might not have it at all because they weren’t confirming it at that time, so those 10 days seemed like an eternity.

So we had a very supportive GP who came to the house and was as helpful as he was able to be, and very early on we were given the name of a family. So at 14 days old we went to visit this family and they were really helpful in telling us that all was not gloom and doom that there was the potential for a future and they gave us some lot of really useful guidance which is how we came to then do a lot of research of our own. Because that did come naturally to two relatively recent graduates. We did know how to research, so we were getting abstracts as though they were going out of fashion from the library and every abstract has more leads within it that lead you down yet more paths. We were gaining our own knowledge in the only way that we knew how to go about it.

Saj: And when you have a child in the normal routine of things you meet various professionals, like say health visitors for example. Did you get support from from people like that or did you find that in the end you were having to become more of an expert on these things?

Sue: We tired very quickly of being told what would be rather than what might be. It was presented in in a very matter fact way telling us what our daughter would and wouldn’t be able to do, to the point where actually we chose to avoid the medics. Because it was an undermining and a very negative depressing situation that they were outlining.

And obviously wasn’t one that we could hear particularly easily, so that whole reality of having an having a child born to having a baby and being euphoric about it, and I’m starting on this new part of your life felt as though it was 100% denied to us. That was for everybody else, but we were going down a different path and we had no idea where it was going or what it looked like or what Jen’s future looked like or what our future look like. So it was all very bleak. We didn’t enjoy hearing that, but by the same token, we didn’t necessarily feel that those people had the right to be saying that that would be the way of the future, because every person is an individual.

Saj: So is it fair to say that in those days, the professionals had a very, very rigid conception of what life is like for Down’s syndrome children?

Jen: Well, I think the reality is that Jen was born in 1981 and 1971 was the time when a person with special needs was first entitled to have an education. Never mind what that education might look like or what they might be able to do as a result of it. So it was really very early days in terms of people with a learning disability starting to be embraced by sociert and to be given a chance to be heard and to be seen. So all of the professionals who had been at their game for a significant amount of time had trained back in the day, back in the Dark Ages, when people with a disability or with a learning disability were absolutely written off, put out of sight and out of mind and probably confined to an institution in the middle of nowhere. So nobody at a senior point in the medical profession had any particular knowledge of any other course of life for such people.

Saj: So did this mean that you really had to become autonomous and instead of having to rely on external agencies to help you, that you were having to do a lot of the research and actually do a lot of the work yourself?

Sue: We absolutely did. Yes, I just because I suppose we are who we are and we are proactive and if we are told something we want to understand why we’re being told it and what it’s all about. So one of the things we did very early on was, I jumped on a plane and I went to the states for one day.

And I went to the States with Jen, my five month baby that she was at that time and we went to see a guy who was doing really interesting work using nutrition in Detroit. So we went to see him for the appointment. We didn’t change our time zones, because there is no way I was going to achieve that with a five-month baby. So we were having baths at strange times in the morning and hoping we weren’t disturbing the peace for our neighbours.

That was really interesting, really influential to us. We came back with a vitamin therapy, which may or may not have contributed to where Jen is now. I’m tempted to believe that some of it didn’t, and maybe some of it did.

The other significant thing that we did was we got involved with the British Institute for Brain Injured Children based in Bridgewater, which actually still does exist and we undertook a programme of intensive physical stimulation.

So that started at 9 months old and frequency, intensity, and duration are the mantras of that methodology. It was gross motor stimulation. It was fine motor stimulation. It was neurological stimulation. It was visual, it was tactile, it kind of impacted on every element of a baby’s life or of anybody’s life. But what it principally involved with 60 people coming into the house with one hour each a week to give to Jen.

And that in itself, I think regardless of the exercises, that we were religiously following, I think that stimulation that everybody brought in their one hour was absolutely invaluable, not only to Jen, but to us as well. It gave us hope that we were doing something which might be positive. We couldn’t say it would be, but it might be.

Saj: So in those early years, as Jen started to grow and develop, at what point did you realise that you had a dancer on your hands?

Sue: Jen has always danced from the moment… well, I think she’s just always danced. She’s always moved to music. Even now at 39, she can’t put the music on and sit on a chair. If the music is on, she’s going to be dancing and that’s always been the way. She’s always moved to music and yeah, right from the word go.

Saj: When she was approaching the age where should be going to school, what were you and your husband thinking about… what did you want for her education?

Sue: We were always very clear that we wanted Jen to be included in society and from our perspective, that meant a mainstream education, but we also complicated the issues for ourselves I guess by moving to America for three years.

So time when Jen would have started school in the UK as a I guess she must have been a 3 year old. She went to nursery school and which was a tip off from an educational psychologist I have to say and that was an excellent tip off. But unfortunately we spoilt that by then going to America nine months later where we lived for three years.

So all of this time the gross motor simulation was still going on and we took it with us to the States and carried it on for a further three years. But we entered into the American education system.

Which is very interesting to a British person insofar as fundamentally everything is three years behind in terms of anticipation or expectation. So where we would have a nursery and it would actually be remarkably structured, they have a free for all and that doesn’t suit Jen, doesn’t suit Jen at all. So alongside we did find an pre-school group which we could work with.

But alongside that we were also doing home education effectively over all of those three years, because we were also equally clear we wanted Jen to come back and go back into a UK mainstream school.

So we couldn’t afford just to take a back seat and just be American if you like, because that wasn’t going to cut it when we got back to the UK. And that was true for our son as well. We needed to take his needs equally into account.

Saj: So when you came back to the UK, what sort of reaction did you get from mainstream schools?

Sue: Well again, as you will not be surprised to hear, we put the cart before the horse. Because we were relocating back to the UK to a job in Birmingham, we were able to choose from any locality that enabled Malcolm to be able to commute to his job.

So we interviewed schools, we set our stall out to find the right school for Jen and for Anthony and and that’s so critical because Jen has her special educational needs. But Anthony is a high flying A star student, so we needed schools which could cope with both of them and fundamentally that’s schools that that look at the individual and believe that an individual is what it’s all about and not a cohort of people that happened to have either a learning disability or be high flyers.

So we interview a lot of schools. Then we find our accommodation in the catchment area of the school that we have chosen. So whilst the schools might think they are interviewing us, I would argue that it’s very definitely the other way around and so we have only ever worked successfully with schools where Jen has been valued and wanted as an individual in her own right.

Saj: Was specialist provision ever on the cards at all? Or was it always going to be mainstream for Jen as far as you were concerned?

Sue: There were a couple of times where we faced problems and on those two occasions we ended up going into special education and on both occasions, those were the hardest, most challenging six months apiece of our respective lives that we could ever have experienced and on both occasions we ended up withdrawing from that special education provision.

One was in the States and one was in the UK and going into an even more full on experience of home education following that in order to pick Jen up from metaphorically lying on the ground and just having had the stuffing knocked out of her is kind of what it comes down to and we could not bear to watch that. We weren’t prepared to watch that.

So on the strength that  the school wasn’t doing a very good job, we withdrew and felt we were doing a much better job, but the bottom line for me is that nobody will ever love your child as much as you do so.

Jen was our first born. She was a baby that we had chosen to bring into this world and we felt we had a duty to do everything possible to give her the best quality of life. So we were ever mindful and ever watchful of that. Hence, we interview the schools and find our own accommodation. But fundamentally, she’s an individual and she has her own support needs, as do we all. We just happen to have different support needs.

Saj: So when it was coming to the end of Jen’s time  in education, did she have any particular ideas or thoughts about what she wanted to do next?

Sue: Yes, Jen left school at 18 after the three most successful years of her entire mainstream education, which was wonderful and she left with mainstream aspirationd. She was very, very clear that she wanted to be a community dance worker. She wanted to lead the dance. She wanted to get the world dancing regardless of who they were, in order that people could experience the fun, the joy, the sheer passion and energy, and health benefits from dance.

She really didn’t mind who you were, where you came from, what your age, what your size, what your ethnicity or anything else about you was. So we set about trying to find opportunities for Jen to train to become the community dance leader that she wanted to be.

Saj: And when you contacted organisations working in that type of area, what was your experience?

Sue: Well, given that we were unsuccessful over 10 years, fairly negative. So we hammered on a lot of doors. We went to a lot of meetings. We went and participated in various projects. We visited residential colleges. We did all sorts of things and I suppose maybe there were opportunities out there who felt that they were offering courses that were appropriate to Jen. But if that were the case, then Jen didn’t feel the courses they offered were appropriate to her.

So it’s not only what is on offer, but it’s how do you meet the needs of the person who is interested in that particular training, and so there are there are two questions that have both have to have yes, by way of an answer for a course to be appropriate and successful for any individual.

Saj: Where were these organisations going wrong, would you say?

Sue: I think they were delivering to a cohort of people. A cohort of people who had a learning disability, but that cohort of people are as different to each other as any other set of individuals.

Each one needs to be treated as an individual in their own right with their own personal needs met if they are to be successful, and particularly when they happen to have special needs because there are additional support needs and they do have additional complexities and there’s no getting away from that.

So Jen had had a mainstream experience of dance. She’d gone to the local dance schools. She done Latin and jazz and ballroom and ballet, and all of these various disciplines and that was her understanding and her knowledge base as to what dance was and she absolutely loved it. She thrived on it because the dance school had taken a particular interest in her and particular care to meet her needs as an individual. But that wasn’t then replicated when we went out looking for dance opportunities and very much it was a case of when you put a learning disability, said this is the dance that you are going to therefore be doing, and it was so alien to Jen.

She didn’t even recognise it as being dance. It was her being expected to behave in a certain way with a particular group of people who she felt that she had little connection with, having had a mainstream experience of life up till that point. It was just a very, very challenging set of circumstances that both she and we found ourselves in.

Saj: 10 years is an awfully long time to be banging on doors, trying to get to where you need to get to. How did you keep going?

Sue: Well, there’s a bit of perseverance in two recent graduates. I think you have something innate in you, don’t you? Either you’re up for the fight or you walk away and we’d had various fights along the line and through education as you can imagine.

We do have a track record of winning these battles, but they can take an awful long time to win. So we felt that we knew Jen well enough to fight her corner and to say, well you know this either doesn’t look right to us or it doesn’t feel right to Jen and under either of those circumstances, then it’s not going to be a contender for how to move forward. As I say, I think fundamentally the problem was that people were looking to service a cohort of people with a learning disability.

And there as a homogeneous group, and you cannot do it, you just cannot do it successfully. Every one of those people is an individual, and if you can meet the individual’s needs, then extraordinary things can happen as DanceSyndrome shows each and every day.

Saj: So at what point did you realise that you were going to have to stop relying on other organisations and actually create one of your own?

Sue: Well, you get tired of knocking your head against a brick wall eventually and having come up empty handed and having that confirmed by the cohort of community dance workers in the country who we met at a conference an and they just said no. The training that you’re looking for does not exist.

So with that and with a sense that we weren’t going anywhere fast and time was marching on, we decided to try it our way and just see what happened. We had no idea of what our way looked like. We had no idea of the form this dance would take or where it would go or what opportunities there might be or what platforms they might work on or what the dancers would want to do or how they would communicate with everybody. It was all an absolutely blank sheet of paper.

But we were giving it to a group of dancers who we had found through advertising, an inclusive group who had dancers with learning disabilities, leading the way, in control of the situation inviting the non-disabled dancers to work alongside them and we fundamentally gave them the opportunity to design the blueprints that said, this is what we as a cohort of dancers, some with, some without learning disabilities want to do.

Saj: So you were really centring the needs of the dancers themselves, rather than trying to impose something upon them.

Sue: 100% yes, we had not a clue what it was going to look like. And as time has gone on, it shows how little vision we had as to where this dream might go. I suppose I tried really, really hard not to put goals in place, because I think if you have goals and if you score that goal, where do you go from there? So we just have a vision that we are on a journey through life and this journey is going to take us somewhere, but you don’t know where. All you know is you are where you are and which way are you going to turn from here? And then you find out where that next path leads. You just have no idea – whoever could have thought that Jen would be dancing at the House of Lords or that she would be at the 25th birthday bash of the Big Lottery [Fund] and having her photo taken with Sir John Major.

Well, you know any number of other extraordinary realities which are part of this journey and had we preordained what it would look like, we would not have been open to those possibilities.

Saj: So when it came to creating a charity, were you very much on your own and having to do all the research or were there any people or organisations that were able to help you?

Sue: Now there’s the wonderful cliche, which is so so true. It’s not about what you know, but who you know. We were talking about DanceSyndrome with anybody who would listen by that point in time, including our solicitor. And our solicitor very kindly understood where we were and the need to create a charity from this, this dance company called DanceSyndrome.

So he very kindly pitched in. He had a vested interest, I suppose, insofar as he has two daughters of his own, who have Down syndrome. So he was particularly interested to understand something of who we were, and where we were coming from. And he undertook all of the the nuts and bolts of creating a charity for DanceSyndrome, for which we are eternally grateful. It’s been a very necessary thing to do. We have no idea that it actually was necessary until it was pointed out to us by various funders that we weren’t going to go anywhere until we were a charity.

Saj: In the process of setting up the organisation, was it quite a slow start to begin with or did you find that once you got going, that you were starting to attract supporters?

Sue: It was a journey which obviously, from what we’ve said before we needed it to grow in its own time and in its own way and in the direction that it needed to grow. So, I think in the very first instance, the dancers needed to learn how to communicate with each other and we needed to give them time and space to be able to do that. And then we went into a year where we were doing absolutely everything and we were, you know, anybody who contacted us and gave us a platform, we were absolutely snapping it up because these dancers wanted to be on platforms.

And then we recognised that well, actually there seemed to be a bit of traction here and there was a lot of interest. We did have an Awards for All grant that first year and we worked with something like 72 organisations. It was absolutely huge and so that gave us the opportunity to trial the philosophy that you could be led by dancers with a learning disability and people would be interested in your product.

So having established that, we then sort well, we need to get a bit more savvy about this. So we went into a year of training. So that was training for the dancers in dance skills, so to expand their dance vocabulary, but it was also leadership training. Because if you’re going to be led by dancers with learning disabilities, they need to learn how to be leaders.

So that was 2012 and we cut the number of performances down dramatically that year in order that we could focus on those two areas. The following year we went a bit mad and we ended up on BBC launching Comic Relief with Miranda Hart at Manchester Town Hall. So that kind of took over that year and then in 2014, which is when we became a charity, am I right in saying that? No, I think it was ‘13 and we became a charity, sorry.

But 2014, our current MD joined us and she was successful in supporting us to be able to get to seriously big grants, which allowed us the time and the opportunity to really hone our product and understand who we were and where we needed to be and to give the dancers opportunities to experiment. Because we weren’t having to look over our shoulder for where the next penny piece was coming from at that point in time.

So those two grants were instrumental in allowing us to develop our own identity, and I think had we actually been a part of any number of the mainstream people working in this field, Corali or Foundation for Community Dance, had we been an offshoot of those people, I don’t think we would have had the identity that we have now developed in our own right, which now allows us to partner with those people, as and when and where those opportunities arise.

So I think being much more independent of the rest of the dance community has allowed us to become our own person, and I think the proof of the pudding is in the eating. The things that Down syndrome has achieved in its 11 short years is absolutely phenomenal. It’s boxing way above its weight. It’s in national and dare I say, starting to be in international demand and on such big stages and these dancers think nothing of it. They absolutely love the high life and the exposure.

Saj: So the pandemic is obviously created a lot of challenges, particularly for charities with the levels of donations and not being able to have a lot of in-person activities. So how has DanceSyndrome adapted to the pandemic?

Sue: Well, obviously we had like everybody else to take all of our activities online, which we did in fairly short shrift, and actually, it’s been highly advantageous for us in so far as we have much, much wider geographical reach now. And it’s allowed us to give individual dancers more opportunities to focus on their own particular interests. So for those who have been particularly or who are particularly interested in choreography, they’ve been able to do one zoom session and others who have been interested to lead the inclusive ballet or the inclusive street have led those sessions. So actually it’s raised the profile of a lot of the dancers and they have developed incredible confidence not only in the use of technology, but also in themselves.

And just to watch them blossom through Covid has been extraordinary, and to see the whole of the cohort of the DanceSyndrome collective, which is the name given to those who are the leaders within DanceSyndrome… to see them and where they are now already over a year into Covid, but so positive, so engaged, so vibrant, so interconnected with each other, is just extraordinary and it cannot help but a smile on your face. It’s just the most wonderful environment, heady environment, to be a part of.

Saj: And for Jen herself, what kind of effect, what kind of impact would you say that DanceSyndrome has had on Jen herself.

Sue: Oh gosh, it’s 100% the making of her. Jen talks about her having her life through dance and giving others the opportunities to have their lives. But in doing so they give her her life. I haven’t put that very well. I need to get you the specific quote, but fundamentally it’s a perfect circle where she enables them and they enable her. And together they get stronger and the ripples get bigger and wider with each passing day and passing year.

Saj: So, for people who are listening, for parents of Down’s syndrome children who are young at the moment, is there any advice or any insight that you could offer to them?

Sue: Absolutely, I would say your child is the best teacher you will ever have and to learn from your child, to listen to your child, to listen to them in every shape and form. No matter whether that’s body language, whether that’s verbal, whether they choose to be confined to their bedroom, whether that’s a change of behaviour. Whatever it is that they are sharing with you and however they are sharing that, listen.

Because they are the best teachers. They know – they might not be able to tell you what they know – but they know what works for them and if they start acting in a strange way or differently in a way that you do not expect and you do not know the reason for it, there is a reason. And your job as a parent is to uncover that reason and understand that reason and resolve that reason. Because if you just sweep it under the rug, it will just go from bad to worse. It will never get better.

So, fundamentally, to listen to your child and to believe in your child, because you are the one that has the best understanding of them. And if they do act up to you, it’s because they love you so much and they know that you will not be judgmental on them. You will support them and you will help them to sort out whatever it is that’s giving them grief. So fundamentally it’s to listen and to believe.

Saj: From your experiences, what things can educators do to make things better for young people with disabilities?

Sue: I think education is a really challenging scenario for all parties. For the person themselves. For the parents who love that person. For the educators who are trying to do their best by that person, but also by the rest of the people that they are responsible for educating. It’s a really challenging scenario, but every person is an individual and you can look at a person with a learning disability in one of two ways. Either they can be a basket of needs and a problem or they can be an asset and they can be a talent and your job as an educator is to draw that talent.

Bring that opportunity to the fore and enable the rest of the people that you are educating to benefit from that, so that society becomes more tolerant, more appreciative, more understanding, and so everybody leaves that place of education in a better place. The person with a learning disability feels supported and wanted, and values for the person they are. And the person who doesn’t have a learning disability, but is going out into the big wide world has really positive memories and experiences from working with the person with the learning disability.

So I just would urge people to look at the positives and not at the negatives. And if there are challenges along the way, to ask the people who know the best and the people who know the best are the parents. Don’t ever think you are the professional, therefore you have all the answers. Go to the parents and explain the situation to them and 9 times out of 10, those parents will be able to help you because they know that person so so well.

Saj: Absolutely, I’m a great believer in that myself. And finally, for people who want to know more about what DanceSyndrome does and maybe want to support the work of DanceSyndrome, how can they find out more?

Sue: Oh, I need Jen here! Well, they can Google us. We’re on the Internet, so the website address is We’re to be found on Twitter, on Facebook, on Instagram, on YouTube – there’s loads of stuff on YouTube. If you look at the videos and if you’re not inspired, please write and tell me. But if you are inspired, lease come and join us,  because there is so much footage there which is absolutely liberating if you can find the time to take a look.

And we would love the world to engage because there is so much positivity in the Down syndrome camp, but also from everybody who does engage with us and all of a sudden you see people differently. You engage with them differently. And I would hate for someone to tell me I engage with people with Down’s syndrome. In fact, I guess it was Down’s Syndrome Awareness Week and I was looking at the cohort of people in the collective and I suddenly went oh my goodness, we actually do have a lot of people who have Down’s syndrome and I hadn’t evee thought about that. I’d thought about Helen and Peter and David and Jen and any number of people who are individuals. But yes, they do have Down’s syndrome. It’s just a part of what makes them them.

Saj: Well, thank you very much Sue. It’s been a real pleasure to talk to you today, so I appreciate you giving your time today, so thank you very much.

Sue: Well I hope some of it’s hopeful and comes out in the recording!

Saj: Thanks to Sue for sharing her and Jen’s story. I hope that you have a better insight into the challenges that families with learning disabled children face when they’re simply trying to do their best for their loved ones.

As Sue said, if you want to know more about the work of DanceSyndrome and support them, visit their website at, where you can also find links to their social media channels including Twitter and YouTube.

If you’ve enjoyed this episode, subscribe now to Universal Learning wherever you listen to podcasts and do feel free to rate and review it too. Thank you very much for listening and I hope you can join me for the next edition of Universal Learning.

Visit our website to read transcripts of each edition and find out more about how you can put inclusion into practice for all of your learners. The music you’ve heard in this edition is Sinara by Blear Moon, and sound FX are by New Age Soup, both licensed under Creative Commons. Visit for more information.

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