What does inclusion mean to us?

March 21st marks World Down Syndrome Day, the theme for 2022 is ‘Inclusion Means’. Today, we ask some of our members what inclusion means to them.

‘Since having River my thoughts on inclusion have changed a lot, in fact if I’m honest I don’t think I ever thought about it too much at all. Yes, I believed that everyone should be able to do the things they wanted to do, but I never questioned how that could happen or why it should.

When I was in school the additional needs classes were completely separate to the mainstream section of school. We didn’t interact in any classes, sport and even breaks and lunch were separate. Why? For generations before mine, that segregation was even worse and all it has resulted in is adults who don’t know how to interact with disabled people and feel discomfort in their presence. That needs to change and I feel really thankful that light is finally being shone on this and things are starting to change. Now that doesn’t mean that it’s possible in all circumstances, but it should always be an option and the fight for it shouldn’t be so hard.

I believe that River should be able to be part of a classroom and expect accommodations to be made for him. I don’t mean just allowing him to have a seat in the room, I mean real strategies that will ensure his growth and enable him to reach his full potential. If River wants to participate in sports, drama, clubs and anything that he chooses to try and if he isn’t welcomed, I will absolutely question why. He deserves to have the same opportunities as any other child and I will always fight for that for him. He needs it and other children need the opportunity to grow up alongside children who are different to themselves. That’s how we will change the world.

We’ve been really lucky so far and River has had nothing short of a wonderful school experience. He is the first person with Down syndrome to attend there so it is not easy, but we are learning as we go along and he is welcomed and included in all aspects of the school day. He loves school and is loved right back. He is also part of a Taekwondo club and swimming lessons, where again he is the only child with Down syndrome. He thrives in both and is wanted at both, which shows in his development and love of going. I understand that in his future we will face times where I’ll need to fight for his inclusion, but I’m ready for that.

Inclusion can only work if a school wants it. A child can only thrive if they are wanted, no matter how much the law forces it upon organisations. If a child is wanted, nurtured and believed in, then inclusion stands a chance and the whole of society can benefit.’

Hayley Balozi – I am River

‘What inclusion means to me, is seeing my daughter be accepted for who she is and not an associate label. I feel that often Harper’s Down syndrome is seen first, before people see her true self and a prejudgement is made based on this.

Harper is a twin, with a twin sister called Quinn. Seeing her sister naturally be included is hard for me, because I see them both as equal. I just see my daughters, yet often Harper is treated differently based on her diagnosis.

I want the world to see Harper for the amazing, funny and loving little girl that she is. Down syndrome is a part of what makes her who she is, but she is so much more than just her diagnosis. See her, not the label.’

Nicola Bailey – Bailey and the Babies

‘For me, a little while ago, inclusion meant getting an invite to the party or being in mainstream school. Since having Sarjan and watching him grow, my thoughts on this have altered over time.

Now for me, inclusion is about embracing, accepting and adapting situations to accommodate those with additional needs. Inclusion is education and the willingness to truly understand. It’s about spreading awareness, especially for future generations. It isn’t a mere tick box exercise, it is extending the acceptance to celebrating and appreciating the differences of others.’

Harps Kaur – Baby Brain Memoirs

‘To be honest, I don’t really know what inclusion means. My son Matt doesn’t attend anything inclusive and lives in a world of special needs. His friends have disabilities and the activities he enjoys are just for people with disabilities.

He doesn’t fit in the mainstream and neither does he want to fit, being very happy living in his SEN world. Even within the disabled community he is different. He doesn’t conform. His needs mean that he needs more help than most of his friends and usually it falls on me to ensure he is included. The nearest he gets to inclusion are the clubs and groups that I run (Notts DS support group and EFC Warriors Football Club), for people with disabilities, yet even within the disabled community people are excluded and the more able participate more.

Inclusion within the SEN setting means enabling and including, regardless of ability or behaviour. It means providing support regardless of ability or behaviour, differentiating activities and having realistic expectations, really getting to know a child/ adult and learning what they need in order to help them thrive. It means talking to parents, hearing their voices and ensuring they get as much of a break during activities as those who have children with lesser needs. It means training staff and choosing volunteers that reflect the same mindset. It’s a whole load of extra work, but these groups need to be for everyone, or no-one.

I loved it when Matt was small and in mainstream, with some children fully embracing him and wanting to be his friend. Yet plenty of kids didn’t and that didn’t bother me, because that’s just kids. Everyone should be able to choose who they want to play with, as long as they are kind and let’s face it, the majority of us adults don’t have friends with severe learning disabilities. Unlike race, physical disability, LGBTQ, etc, where there is no justifiable reason for creating barriers, a learning disability does make you less able to be included in mainstream friendship groups.

Yes our children should be included in schools and enabled to do their very best. The best communities are the most diverse! But I don’t think it’s possible for them to be included in every way, especially as children get older. Maybe the narrative shouldn’t be inclusion, but kindness and acceptance.’

Helen Coppins

‘The abuse and isolation of people with learning disabilities has been going on my whole life and is still happening. It starts with individuals being withdrawn from education, excluded from public life and quietly sidelined from public events. If you don’t have contact with anyone with a learning disability in your every day life, then why not? Reach out and help. Your life will be the better for doing so and organisations like Mencap, Barnardos and DS Workfit are actively recruiting volunteers, so call them! Or just befriend the family from down the road. Just do something.

I have been advocating for many decades, yet inclusion right now is tokenistic and it’s a plaster being stuck over a deep problem. Inclusion is meaningless right now, because it’s not really happening. When I was born in 1963, people with Down syndrome by law, were not allowed to access education or indeed proper healthcare. Now babies born with Down syndrome are not taken from their mothers arms and locked away, they are offered places in schools and offered health care. However, that’s because the majority these days are not even allowed to be born.

I don’t believe my son was ever invited to parties when he was a child, maybe one or two. He was treated so poorly in mainstream school that I surrendered and sent him to special school, where even there he was excluded from the school pool and residential trips. Special needs events using Makaton (brilliant), will cause discomfort to some by playing loud music which effects many with sensory processing disorder. He was even neglected at his specialist college that took me three years of campaigning to get him into, so I’m sure you can understand my anger after 21 years of nonsense.

I take my son to so many mainstream events now and I include him always, but I spend most of my energy reassuring others that it’s all ok. G is no trouble at all, yet even youth workers who are paid to offer fully inclusive activities find themselves asking us to consider special needs groups. I’ve had this repeatedly and have repeatedly explained that until the mainstream get used to seeing those with Down syndrome and managing their own discomfort, nothing with change. Others are the problem, not my son.

Often I find that the kindness of strangers is the main thing. They clock that Geraint has Down syndrome and he has such a gorgeous and engaging personality, that lovely things happen. Unfortunately exclusion is deep within our culture and people have a lot of fear and ignorance, which means nothing really changes. In an ideal world my son would have access to all opportunities, but we have a long way to go until true inclusion is reached and a lot of lessons to learn.’

Sarah Hoss

‘What does inclusion mean to us?

For our family, inclusion is a much wider topic than just a school setting. It means Caleb and others with differences will be accepted without prejudice. It means the will be allowed the same opportunities as a neurotypical person, whether that be employment, transportation, a place to worship or simply where to eat dinner. It means accommodations and thoughtful design. It means accepting attitudes and open minds. It means access to everything the rest of us have access to. It means representation at the table, whether its in the board room or advertising. It’s a wider lens than most people have.

I hope; I feel; the slope towards greater inclusion is happening. But our wish is that it would hurry up and get there!’

Karen McConeghy Prewitt – Caleb’s Crew

‘Inclusion to me is a feeling. It’s fully immersive. It’s empowering. It’s choice. It’s acknowledging differences and needs in others, and accepting those differences without judgement. Inclusion should be effortless. Invisible. Seamless. Never forced.

Inclusion isn’t building an accessibility ramp alongside a set of stairs into a building, it’s getting rid of the stairs completely and having a ramp for everyone to use. Never a one for us and one for you attitude. It’s not about treating everyone the same. Everyone has their own strengths and weaknesses, and this should be celebrated instead of feared. Choice is the most important element of inclusion. You can still feel isolated in a crowd and not all people who like their own company are lonely.

Inclusion should run through the foundations of every community. From the policy and law makers, educators to social opportunities and friendships. Nothing about us, without us.

Inclusion is recognition that every individual has worth, has rights and deserves respect, whether they share a group or an individual goal.’

Nicola Houghton – Jessica Williams Zebedee Model

‘I dream of a world where when an observant child points at another child with a disability and asks at the top of his lungs, “Why can’t he talk properly?”, that his parents don’t drop their heads and pretend they didn’t hear him.

I dream of a world where children aren’t “shushed” because their grown up is embarrassed of the question on disability, that was innocently asked.

I dream of a world where we answer these curious questions, or at least try.

If they go unanswered we will keep teaching our children, our leaders of tomorrow, that disabilities are taboo and to be embarrassed about change and difference.

I dream of a world, where when my son walks in a room – no-one bats an eyelid.’

Nisha Jogia Soni – t21 Team Kush

‘Inclusion is believing that Ivy belongs. Period. Full stop.
 It’s believing that a space will be better because Ivy is there. That everybody benefits from her presence. Once those beliefs are in place, it’s a simple jump to ask “does she need any supports in place to be able to fully participate?” 
Inclusion is all of this happening without me needing to fight.’

Lindsay Filcik – My Incredible Ivy