Special Needs: It’s Time To Flip The Narrative

Helen Burness - 18 Jun 18

Branding seems to be on my mind at the moment. I am in the middle of a major one for work and have also been setting up my own consultancy, so have spent a lot of time thinking about how I brand myself personally and professionally, driving my husband up the wall in the process (note for self – husband does not like viewing of Suits interrupted by me asking relentless questions about colour palettes.)

When it came to branding my child “special needs” it took me a long time. I couldn’t even say that Marigold had special needs. And it’s still not really language I like to use.

Why?

For me, I felt a huge stigma still around this terminology. When I grew up in the 80s (ah – the 80s etc.), it was rare that “special needs” was talked about in a positive, inclusive way. Children with special needs were often the subject of pity. “Such a shame” people would say, about the little boy down our road with Down Syndrome.

So when it has come to talking about Marigold and her rare chromosome disorder, I tended to beat around the bush with different terms.

“Different needs.”

“Additional needs.”

“Health and developmental needs.”

“Complex needs.”

But when it comes down to it, “special needs” is the language, the terminology that people really understand, from medical and educational professions to the man on the street. So seemingly stuck with this, in honour of Chromosome Disorder Awareness Week, the marketeer in me wants to give special needs a rebrand.

It’s time to flip the narrative.

I want the world to understand that children with special needs ARE special, not in a way that needs pity and sadness, but in a way that needs positivity, support and inclusion, so that nobody sets limits on them and they can achieve their full potential, respected and supported by society.

Children with special needs are born with the odds stacked against them, for whom everyday life is challenging from the mild, to the moderate to the extreme. Yet every day I see so many of these children achieving against those odds, setting new limits and achieving amazing things.

One of my greatest finds this year has been Zebedee Management, a specialist model and talent agency who represent people with disabilities. The first time I came across them was on the back of the River Island campaign ‘Labels are for clothes’ which featured a diverse set of children with different disabilities including Down Syndrome, rare chromosome disorders, autism and ADHD, wearing outstanding fashion and basically looking THE BUSINESS. This was a brilliant campaign by a popular high street brand which brought children with special needs into the mainstream. The impact of representation in the media cannot be underestimated. By showcasing children with special needs in campaigns like this, we are creating awareness and acceptance around those with disabilities, which will ultimately lead to much greater inclusion. I recommend anyone looking to be lifted, to be inspired by some of the beauty and achievement in the world of special needs follows Zebedee on Instagram and FaceBook. If you are a major brand, would you consider using children or adults with disabilities in your campaigns? Because – maybe I am biased – these faces, these people are amongst some of the most beautiful, the most captivating, I have ever seen. Every face is unique and tells an amazing story of positivity and challenges overcome …who wouldn’t want to showcase this?

And the talent isn’t just about modelling, it is about children with special needs who dance, who sing, who act, who have a range of abilities you might not associate with their label and who are fulfilling their dreams and life goals.

In addition to trailblazers like Zebedee Management, there is a new generation of SEN warrior parents taking to social media to tell their stories, to champion their children, to tell the world that even though their child maybe be different, although they may need help and therapy and support, they have talents, they are achieving incredible things, in their own time, in their own way. Breaking news in just recently is that Marigold, aged 4, drew her first “face”. A circle (kind of!) with three dots for an eye, a nose, a line for a mouth and even legs. For the parents of a neurotypical child it wouldn’t be a major thing, but knowing how delayed Marigold is with her fine motor skills, considering that she couldn’t even pick things up or bring food to her mouth for the longest time, this is a huge achievement in terms of coordination and control. She has practiced and practiced to get there and I am so proud of her relentless determination.

And whilst we are on the subject of seeing things through a different lens, let’s talk about special needs warrior parents. My special needs parent friends are amongst some of the coolest human beings I know. These are people who have practically medically retrained to become a specialist in their child’s rare condition or syndrome. People who are often trying to juggle a career with the demands of ongoing therapy, admissions and appointments. Some have given up careers they love in order to devote themselves to the care of their children and make sure they have the best possible experience. They are people who fight tooth and nail for funding and services, who relentlessly call their EHCP coordinator five times a day to chase for paperwork (OK, that might just be me, sorry Siobhain). Advocates, fighters and champions, often with superhuman powers as they battle through daily life on minimal sleep. And yet some of the most generous-spirited, humble and lovely people I know.

Special needs warrior parents, I bloody salute you all.

I feel even as I write this, that we are on the verge of something amazing in the UK, of truly flipping the narrative and recognizing individuals with special needs and disabilities. Two weeks ago, Lee Ridley won Britain’s Got Talent. Lee, who has cerebral palsey, calls himself Lost Voice Guy. He is non-verbal and delivers his whole act through an Ipad synthesizer. His Twitter handle reads “That speechless comedian with an iPad – disabled before it was popular.” I watched his act and I cried. Firstly because he is a really very funny, but also from the magnitude of seeing someone with such complex needs succeed in something which is renowned for its difficulty to break into. And the fact that he was voted for by the British public shows how perceptions are changing. Through his act, Lost Voice Guy is challenging perceptions of disability and making the world laugh as he does so.

Then one week later, Sarah Gordy, a ground-breaking actress with Down Syndrome, was awarded an MBE in the Queen’s Birthday Honours. Her Twitter handle reads “ Actor and dancer. I have Down Syndrome but that is not all that I am.” Couldn’t have said it better myself Sarah. What an amazing role model for our unique children to realise that they can achieve their hopes and dreams.

So what does it really mean to have special needs?

Look at some of the words I have written.

• Achievement
• New limits
• Positivity
• Dreams
• Goals
• Incredible
• Proud
• Determination

These are the words we should associate with our children with special needs. And these are words that make me proud of my amazing daughter…..who happens to also have special needs.

It’s time to flip the narrative.

This week is Chromosome Disorder Awareness Week. To celebrate some of the achievements of our children with unique and rare chromosome disorders, follow Unique’s uplifting campaign on FaceBook, Instagram or Twitter and see how our children shine bright together.

Website: www.rarechromo.org

Twitter: @uniquecharity

Instagram: unique_charity

Follow Helen on Twitter on @hburness and read more about life with Marigold on www.measuringthemarigold.com

With thanks to @elly_chapple for her inspiration on the #flipthenarrative campaign

Helen Burness

Helen is many things: 80's enthusiast, die hard Inspector Morse fan, marketing consultant, frustrated writer but above all, devoted wife and mother to two beautiful children. Her daughter Marigold was born with a unique genetic condition, trisomy 3q11 mosaicim and it is through her experiences with Marigold that Helen has found her voice as a blogger. Helen writes to raise awareness and promote understanding of those affected by rare genetic conditions and to show the world that there is beauty and hope to be found in a genetic diagnosis. Helen lives in South London with her husband and rock Sunil, her 7 year old son Harrison (who also deserves airtime for being the best big brother in the world) and of course, the wonderful Marigold herself.

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