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The Cards You Have Been Dealt: Playing the Labels Game

Hayley Goleniowska by Hayley Goleniowska Additional Needs

Hayley Goleniowska

Hayley Goleniowska

I'm the founder of Downs Side Up. It started as a way of sharing our story and resources with other parents with a child with Down's syndrome. The...

I had no immediate answer to this question last week. Nothing tripped off my tongue, there was no pre-prepared reply stored in my head, largely because I don’t consider myself this way.

Save for a handful of leaflets and forms that tell me to the contrary, this is not how I would choose to describe myself.

Maybe that’s because Natty’s physical needs aren’t very complex, or because caring for her isn’t a 24 hour role that is solely my responsibility at the moment.

Then again maybe it’s because I’m in denial.

Natty’s team and we her family will always support her in some form or another as we work towards her independence of course, but does that make me a carer?

I am simply a Mum that cares for both of our girls, albeit that one needs a little extra input at times.


This question put me in mind of a Powerpoint slide I had seen recently.

It stated that only children with disabilities are considered to have siblings. Others just have brothers and sisters.

They also have Mums, Dads or guardians not carers.

And that’s why this question stood out for me. Somehow carer sounds a lot like a job, a hardship, a burden. And do such terms serve to further alienate and differentiate our children from society?

Labels that Support, Limit or Harm

There is no denying though that each and every one of us shapes our identity from a combination of labels. They make up a picture of how we see ourselves, how we feel about ourselves and that, in turn, affects the way our futures are built.

‘Carer’ and ‘special needs parent’ were labels that were handed to us along with Natty’s diagnosis. They weren’t titles we actively sought for ourselves, but they were part of the hand life dealt us.

And there is no denying that these labels can bring support. Just ask any parent whose child is awaiting a diagnosis and they will tell you how important labels are. Without them, packages of care can be denied.

Labels can limit and even harm us too, and many of you work tirelessly to end the use of offensive terms for those with disabilities, as well as encouraging the use of person first language.

The unique child behind the condition is what counts after all, let’s raise our expectations and not set limits with generalisations.

Self Care for Parents

And by the same token we, the special needs parents, the carers must be wary of focusing too intently on just a few of those identity cards in our deck. At our peril we ignore the rest, the seemingly unimportant, the trivial, the less pressing or serious. The ones that are always being pushed to the back.

I’ve heard too many stories of Mums putting off their smear tests because they have no time, until too late, of parents’ mental health suffering, or, like my own cautionary tail, suspected MS which turned out to be burnout.

Unless we heed the parts of ourselves that make life fun, and pop self care back on the agenda, then those labels like carer, advocate and teacher are in danger. Unless we remember the fully rounded people we truly are, we cannot bring the best of ourselves to those roles day after day.

Shuffle the Cards

So take a look at the labels cards in your hand. The chances are ‘carer’ is in there, but is there a card at the back that says, ‘park runner’, or, ‘film buff’, ‘chocoholic’, or, ‘loyal friend’, ‘knitter’, or, ‘bread baker’?

Bring them to the front. Just once in a while.

Have a re-shuffle, remember the person at your core, take control of those labels and use them to your advantage.

A Victoria Wood sketch recently reminded me that I used to be a step aerobics addict, way back in the 90s before I grew squidgy and tired.

I’m off to see if I can find a class to fit in with my current schedule, or pehaps a DVD I can pop on when the girls are in bed.

Might have to ditch that 90s lycra first though…

Let us know what your relationship is to the many labels in your life.

Are they a help or a hinderance?


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