‘Rise the tide and all boats will float’

By Caroline White

The Down Syndrome Bill, despite undeniably being a massive step forward, despite getting unanimous backing in Parliament from ALL parties, despite being a piece of history, a world first, has brought out some negative responses. Everyone has a right to their own feelings and I am always ready to be enlightened, but nothing will convince me that the Bill is anything but something to celebrate and will not dampen my feeling of celebration. I am, however, not an academic, I am a mum. A mum of a teenager with Down’s syndrome.

So what do some people think is wrong with it? How can Friday’s incredible feat and sense of positivity be seen by some as a massive faux pas for our community?

Some have said the Bill is (ironically) discriminatory. Exclusive. That by singling out Down syndrome we are putting a hierarchy against other learning disabilities and giving people with Down syndrome preferential treatment over other people with different diagnoses. It is a valid point.

First of all, yes ALL people with learning disabilities should be treated equally, need access to opportunity and healthcare. That is a given. It is an enormous group of people with a huge range of needs from complex to mild. Let me be clear, every person on this planet deserves the same access to services and support and opportunity. The Down Syndrome Bill doesn’t remove these rights.

The Down Syndrome Bill recognises people with Down’s syndrome as a specific group of people. An identity. A learning profile and a range of shared needs and potential health challenges, as well as strengths.

🤔Hang on, don’t you spend your whole life shouting from the rooftops that Seb isn’t the same as anyone else with Down’s syndrome, he isn’t a list of characteristics in an NHS leaflet, and he is more like his family than anyone else with Down syndrome?

Errrr yes I do. And this is still true. BUT people with Down syndrome all have an extra chromosome. Their genetic make up is different to people without Down syndrome. And just like the rest of population, they share some common (but not exclusively all) characteristics, challenges, strengths and weaknesses. Their extra chromosome means that 50% of people with Down syndrome may have heart problems. Or be more prone to Alzheimers. Or leaukemia. Or, as visual learners, may benefit from communicating with Makaton. Or struggle with fine motor skills like doing up buttons or holding a pencil. Or may have a tendency to live in the moment and run off and get lost!!! (Anyone? Anyone?). People with Down syndrome don’t just identify as “people with Down syndrome”, they also fit into a broader disability profile, as well as learning disability and will each identify in other specific groups such as autism, OCD, coeliac, LGBTQ+, Chelsea fan and so on. They are a venn diagram of several things but they do ALL have Down syndrome ALL of the time. Human beings are tribal, we all identify within certain groups and tribes, which crossover and are unique to each of us and we are driven to look after our peers who share our common connections.

The Down Syndrome Bill recognises people with Down syndrome as a minority group of people. An identity.  A group of people who have historically been discriminated against on the basis of their appearance and cognitive ability – judgements made based on a level of speech or perceived level of comprehension.  DNR slapped on their medical records, overlooked for employment despite wanting to work, excluded from classrooms and so on.  Heidi Thomas, writer of Call the Midwife, has talked passionately about the Bill – her own brother died aged 15 as he was denied life-saving heart surgery simply because he had Downs syndrome. Having Down syndrome was the single given reason for denying him the treatment he deserved.

On Friday I spent the day with a good friend who has a son with Down syndrome. He is a couple of years older than Seb. We laughed and shared so many common experiences of what our boys get up to – from a love of FaceTiming random people at ungodly hours to their incredible empathy and depth of feeling in their drama studies. How each them can recite whole chunks of Shakespeare / tell you the Chelsea line up but neither can recall their number bonds to 10. Their love of slapstick comedy. If you met our sons you’d be able to tell they both have Down syndrome but they are still two individual people who look very different and have very different personalities. You would know they had Down syndrome in common but you definitely wouldn’t think they were brothers or twins, any more than you’d think that their siblings were.

I have over the last decade worked with both National Mencap and our local Mencap. I love that the charity champions all people with learning disabilities and as the Chair of Bath Mencap I love meeting our members and getting to know them, each with their own needs and individualism. I HONESTLY love that.

But in my role as the parent of a child with Down syndrome, the biggest comfort I get is from within the Down syndrome community. It is a deeper connection. Friends who have experienced my exact world. That get it. That have been there. Or are going where I’ve been. That have had to fight to keep their baby in their womb. Have constantly had to fight for their worth and place in society. In school. That have had to fight for their kids to be represented in ad campaigns. That have had to fight to keep the speech and language that they are entitled to. That have had to fight for their child to be given the same opportunities to access their hobbies as everyone else. That have had to navigate systems designed to be as hard as possible to get through. I have not experienced beyond teenage years but I can sleep at night a little sounded knowing that when I am no longer here Seb’s needs will more likely be met now. And he will hopefully be able to work in a job that is meaningful to him.

I know for a fact that Seb also identifies as someone with Down syndrome. We have had several occasions where he has gravitated towards another persons with Down syndrome and said hello. 

The very fact that specific support groups exist, like DownsEd, the Downs Syndrome Association, and DS support groups nationwide, as well as targeted publications that deal specifically with raising the profile of people with Down syndrome and tackling certain challenges faced, reaffirms that people with Down syndrome identify within a certain profile.

So to go back to my earlier point, about shouting at the world that Seb ISNT Down syndrome, that he isn’t defined by his extra chromosome, that he isn’t the same as everyone else with Down syndrome, that he is a ‘boy with Down syndrome’, not a ‘Downs boy’, maybe one day society will understand that having downs syndrome is not a negative thing, the stigma will be gone and maybe his identity within his community WILL be something to be proud of and be defined by.  After decades of pure discrimination of people with Downs syndrome this is a baby baby step towards redressing the balance.

The Down Syndrome Bill is an incredible achievement for our community. It has a long way to go to be perfect, but to be honest, even if it was a blank page, it is still a massive step forward. It doesn’t mean other people in society don’t deserve the same. It is a small step to other big things following. And one day I truly hope every human being on earth is seen and valued equally. As a human being.

national down syndrome

The NDSPG supports people with Down syndrome to have a say in the formation of policy in matters that impact their lives. 

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