The child inside: Do we need to label disability?

As this Valentine’s Day approached, I began thinking about how much we all love all our children equally. How we wouldn’t change a single hair on the heads of those who have disabilities or SEN (even though we might ache to remove the challenges they face in their lives) and how we want to shout from the rooftops about their worth, value and the impact they have on our lives.

For every single one of us, our children are just that: our sons and daughters. They might be brothers, sisters and friends but they are a unique individual first and foremost. Their chromosomal patterns, genetic make-up and neuro-wiring might be an important part of who they are, but it does not define them.  It is not the sum total of their identity.

They are John, Katie, Mia, James or Natty first, with their likes, dislikes, foibles and characteristics that have been shaped by their surroundings and family. They have more in common with you than they do another child with Down’s syndrome, or Cerebral Palsy or Ehlers Danlos syndrome, or whatever set of symptoms many see them as.

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Lose the Label

Our youngest daughter Natalia has just been asked to feature in a new poster campaign by Lose The Label, run by Michelle Clark. It’s a campaign that aims to encourage people to use 'person first' language when they refer to and think about our children, rather than simply ‘a Downs’ clone, for example.

It carries a powerful message through 3 simple statements:

I have Down syndrome. I am not Down syndrome. I am Natty.

Natty is one of the faces of the lose the label campaign
Natty is one of the faces of the Lose the Label campaign

The campaign features a wide range of photos of children and young adults doing everyday activities, all who have Trisomy 21. The images cut to the heart of what we all strive to achieve for our young people: That society stop and think about its generalisations and stereotypes and realise that we are all as different as snowflakes.

I knew straight away that I wanted Natty to be involved and it got me thinking about how my own view and use of labels has changed over the years since Natty came into our lives, and yes, perhaps I too got the labelling wrong once upon a time:

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Labels that Constrain

Within hours of Natty’s birth we received the diagnosis that she has Down’s syndrome and a heart condition.  I’m sure many of you reading can relate to the crushing disbelief, the angry grief and gut-punching shock and debilitating fear that make it hard to even simply breathe in and out. I felt I wasn't up to the job of being her Mum somehow.

When I look back at that snapshot in time, I understand how, rather than seeing Natalia for exactly what she was, a beautiful yet vulnerable baby, our precious second-born daughter, a little sister for Mia, she became in our minds a set of medical complications, a heart condition, a set of symptoms, and worse still, a collection of preconceived stereotypes based on the fleeting glimpses into the lives of adults with Down’s syndrome I had seen over the years. Our baby became in that moment, Down’s syndrome personified. A one-size-fits-all label.

Looking back with shame from my privileged current vantage point of knowledge and love, I understand that in many ways this is how society and the medical profession had presented our newborn baby to me. My own fear and ignorance fed into the myths, but it was my husband who tore up up all the labels, simply saying, “She is our daughter, she’s a Goleniowska, she will be fine.” He was right, and all we needed was love.

Now, seven years down the line, Natalia refuses to conform to one single stereotype that had entered my mind that day. Not just ‘cute’ or ‘musical’ or ‘loving’, but a fully rounded individual with a fun and feisty demeanor. I know now just how wrong I was and I want the truth exposed; those early labels were hugely damaging as I worked towards acceptance.

'Lose the Label' is important because if we can remove the fear from the hearts of just one new set of parents, to buy them bonding time with their newborn, it is worth it. Or if we can shift the thinking of one member of society that will lead them to be more inclusive, then we have improved the life of someone, somewhere. And if we can make people stop and think before they label our children, then we have removed one more barrier before them.

Labels that Support

Now here comes a giant ‘however' and loud 'but'...

At the same time, I began thinking, are labels always an encumbrance? Were some of you shouting ‘I want and need a label for my child!’ whilst reading the above? Am I lucky my daughter has Down's syndrome, a recognisable, visible, testable condition?

I know many parents whose children are SWANS, that is they have a Syndrome Without a Name, or perhaps their child does not display clear or consistent enough behavioural issues to receive a diagnosis.  These parents spend their days at best trying to find reasons, solutions, answers for their children’s symptoms, often feeling under the microscope, always aware that without a diagnosis there might be a question mark over the cause of their child’s condition and that cause might be considered by some to be the parent themselves.

Are they making their children ill? Is the behavioural issue simply a result of poor discipline? We all know someone somewhere tearing their hair out for these reasons.

So without a label, parents find it difficult to access support, funding, educational help or a statement of SEN. These parents are desperate for a label, a diagnosis, something set in stone that they can use to fight their corner.

Label that Sting, or Ring with Pride

Of course labels can hurt, can be used as insults, often thoughtlessly and without the user caring about the impact their language choice has on whole sections of the community. In America there is a very powerful movement to Spread the Word to end the Word to get people to pledge to stop using the R word.

But recently I’ve noticed a significant group of people who refer to themselves as a ‘Crip’ or ‘Autistic’, grabbing the label and using it as a symbol of pride. Taking ownership and rebalancing the meaning; shouting out This is me!

I doubt that one day Natty will grow up and call herself ‘a Downs’, but if she does, well, I will have to respect her decision.

So it seems we do need labels, must court them almost, using them wisely and to good effect.

But Natty and her sister will always be my cherished, beloved little girls first and foremost. Just Mia. Just Natty.

Hayley Goleniowska
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Julie Williams

Agree with all you have said, labels are complex but sometimes needed purely for funding purposes . My beautiful feisty, funny and living son has Autism . He is Autistic as his Autism defines everything about him . How he views the world , Hears, sees , thinks, feels, eats , sleeps, walks, laughs and looks is all defined by Autism . He is severe and has a severe learning disability. I Love him unconditionally Would I take away his Autism? Most definitely . I know that wont Ho down well . His Disability means inequality in health care, social… Read more »

vaguest

Beautifully written. Labels are such a difficult thing, aren’t they? We don’t want them because of all the negatives that follow, but we do need them to access help and support, to get the correct support and treatment for our child, and sometimes just to put someone straight – especially if, for example, a meltdown is causing looks and comments of disapproval, or worse. I personally am going to commission a car sticker that says, “YES, my daughter is autistic. NO, staring isn’t the cure!” Getting into a conversation when your child is trying to climb out of the car… Read more »

Vanella Jackson - Crawford

It doesn’t seem that the label is the problem. It’s the interpretation and judgment put on the label that becomes the problem. I’m a black woman. Some people see that as a negative-some not. I surround myself with people who are positive and raise my special needs grandson in this environment. I’m also a Child and adolescent Psychotherapist who observed that worse than the label , was the guilt and fear of the parents.

sandyfaithking

‘The guilt and fear of the parents’ – yes! I had such a hard time at first thinking I was responsible for my son’s difficulties. Labels are useful if they allow us to help a child, but my son hates the label ‘autistic’ – he doesn’t know how to express it but what he means is “I am not autism, I am me”. I do understand, though – here’s a different spin on the idea of labels: I was the ‘victim’ of abuse. Later I became a ‘survivor’. Some people find the label ‘survivor’ empowering, but I eventually realised it… Read more »

Graham Lamont

Difficult issue to quantify, because we all have labels and many of these are innocent and factual, for example I’m Scottish & sexy(that’s only partly true-;) However, it is a fact that I cannot control or deny or minimize that my Daughter Nina was born with DS and when she’s at nursery, attending hospital or other places, this fact has to be disclosed and frankly I’m okay with that, because the DS component/element is just one tiny part of her and does not and will not define her…..not while I have a breath left in my body! We also celebrate… Read more »

Deb

In the autism community there are differing ideas about whether someone on the autism spectrum should be described as a ‘person with or autism’ or an ‘autistic person’. Some argue that ‘a person with autism’ places the person before the disability. Others disagree and say that separating autism from the person implies that they have a condition that could be viewed as something to medicate or even cure. Much of this argument is wrapped in with how disability or SEN is perceived. If autism is perceived negatively then its no wonder people want ‘person first’ language. If its seen positively… Read more »