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:

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.

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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.

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Hayley Goleniowska

Parent Advocate/Blogger at Downsside Up
Hayley Goleniowska is the author of the popular blog, Downs Side Up, where she writes about life with her daughters, one of whom has Downs Syndrome, and other issues surrounding disability.
Hayley Goleniowska
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13 Comments

  1. 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 care , he will never live independanyly, never marry , have children, or even buy a loaf on his own . Of course this is not true of the majority . Our children and people first with same rights as everybody else . My son is as unique as the next person . I know accept he is Autistic and not this boy fighting inside a shell . In a Utopian society it shouldn’t matter what difference our children have , If only , I will apologise in advance to the people I envy who wouldn’t even if they could take away their child’s disability .

  2. 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 window on the road side because they couldn’t cope with things not going exactly as they had imagined they would is simply not possible, but throwing the word “autistic” out there does change horror and judgement into compassion and understanding. Not always, but usually.

    Sadly so many people, experts included, cannot see beyond the label. If we have higher aspirations for our children they shake their heads, assuming that we are in denial about the severity of our child’s problems and difficulties. But the way I see it, it might take them longer, a lot longer, than your average child, but why should they not be able to achieve most of the things they want to achieve, just because of a label?

    1. downssideup

      Yes, labels are very often a double edged sword. We need them, we hate them, they can be used to good and negative effect. You are so right, it’s about seeing beyond that necessary label to the unique individual and about leaving limiting expectations behind.

  3. 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.

    1. ‘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 still defined me in negative terms. Now I reject them both. I hope I can help my son to do the same – although it is helpful to know that autism means his brain works differently to the majority. That way we know not to place expectations on him that he can never fulfill.

      1. downssideup

        I understand that guilt and blame too, as do many parents I think, at least initially.
        Your point about ‘victims’ and ‘survivors’ is very interesting, because I guess as long as the words ‘survivor’ is used, there is a link to the place in the past.
        Thank you for sharing.

    2. downssideup

      You are so right Vanells, it is the user of the label and the connotation behind it that counts here. Acceptance of our children for who they are and not limiting them with our fear is wise advice indeed. Thank you.

  4. 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 that she is a child of the DS community, because to use a line from the movie The Deer Hunter, “This is this, this ain’t something else”…….but as Hayley says we can’t have it both ways. We claim DLA for Nina, because we recognize that she requires help and support to develop and the reason for this is the extra chromosome she was born with.

    So is this cognitive dissonance at play or are we all just simply contradictions in terms?

    No, I believe that the DS community is evolving and is on a journey to re-frame what a person born with DS is capable of, stands for and represents to society at large. I look forward to the day when a person born with DS stands up and reclaims the “M” word in a similar way that the black community have reclaimed the “N” word and many artists and musicians born with physical impairments have reclaimed the “S” word.

    That really would be ripping up the labels and consigning them to the dustbin forever!

  5. 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 then I can see people being happy to adopt ‘person second’ language. For my son its all about logic. When I asked him if he saw himself as having autism or being autistic he replied “autistic” because in his words “that’s what made him, him”. I agree and now tend to use autistic though I also use autism depending on context.

    However before my son was diagnosed we were in the awful situation of not knowing what was wrong. As a result I was often blamed for his behaviours which really ate away at my confidence. Eventually we got a formal diagnosis and whilst it was a shock it was also a relief to know that I was not to blame. Getting that label not only helped me to feel better about myself but it empowered me to learn more about the autism spectrum and to seek the support he needed. That label also helped me to help my daughter who was later diagnosed with aspergers.

    Nowadays I hardly ever refer to my children this way. They are [name] and [name] just like any other child. The only time their ASD is mentioned is when I deal with schools, medics etc when their label (hopefully) helps them to understand their difficulties. However just saying that they are autistic is not enough. There is still a lot of negative stereotyping about autism and aspergers and it still affects the way people see and treat my children. This is why I still think it is important to explain how autism/aspergers affects my children as individuals. A label on its own isn’t enough sometimes.

    1. downssideup

      Interesting, I had never considered the point about the condition coming after implying ‘treatability’ or ‘curability’. That would be disastrous for any genetic condition wouldn’t it. I mean the idea that DS could be cured makes me shudder.

      I think so many share that sense of relief you talk about after a diagnosis, but I love your point about needing to qualify, to expand and explain. I’m working on a One Page Profile for my daughter currently, a page to explain to new professionals we encounter along our journey.

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