What it was like to grow up as a child with a disability

There are many fine lines in our world; none more so than the fine line between the story of my life and the story of my child’s.

I shared my pregnancy with friends, with colleagues, with family. It was my story – I had become pregnant. Soon enough, it was me who had a child, it was, and is my story to tell.

I told of her joys, her sorrows, her tantrums and the fears she had in the world. I told it all, because she was my child and I had a part to play in each of these events. They were my story too.

For the most part, she doesn’t mind. However, there are times when she refuses to have her picture taken – knowing that I will upload it to my socials. She asks when she can have her own social media page. Essentially, she is asking when she can control her story.

This was my egregious error. In this Kim Kardashian world of social media fame, I failed to notice when my story was no longer my own. My story was stolen. My story was my child’s.

It was, and is, easy to do. In a world were mothers are taught that their worth is measured by looks and the success of their children, it is easy to tout the success of your child as the narrative you’d like celebrated.

In my world, the normalcy of her story surprises me still, so much so – I share her story due to how shocked I am I managed to provide it for her. The issue is, I let the ease of social media become my guiding force, and it is really only as she ages, that I cringe when I realise I’ve made some of the same mistakes my parents made.

I am controlling the dialogue of her life.

It’s true, she’s not subjugated in the truest sense of the word, but like others who have complained that they don’t have control over the dialogue of their life’s narrative, the person who dominates this narrative gets to decide if the complaint is valid (or not). We see parents warned not to share the story, yet parents rebut this with reminders of their rights, and the level of ownership they have over the child.

More so, they rebut the warnings with details about how integrated the child’s story is with their own.

It’s a bit similar to women being told that they are not oppressed, by men ironically. Women, who have been subjugated for centuries, can’t complain about this experience, what the experience is and how it affects them, without others changing it into something else. Thus – their experience is belittled once again.

The same can be said for disability and chronic illness. There is an unspoken, all-encompassing rule that governs this area and it is that disability and illness must be endured and the saddest state of affairs is when there is a child involved. While the trope of the disabled or sick child is a heart rendering one, it is this way due to how the adults in the world interpret the impact the child’s disability and/ or illness would have on their (the adult’s) own life – not the life of the child.

The narrative of the sick or disabled child is controlled. The prevailing voice is how difficult and all-consuming it is for the parent or care giver, and how sorry we need to feel for this poor, defenseless child.

The narrative of the sick or disabled child is rarely told by the child, and when it is, there is a parent or care giver in the back ground spinning the version – ensuring that all who hear the dialogue know how this situation impacts all. In fact, it is clear just how much this child’s illness or disability impacts everyone; everyone that is, except the actual child.

Others control the dialogue, others control the narrative, and do not let other versions of this narrative be told.

The narrative told by previously sick children, most often who have grown into chronically ill adults, is monitored, silenced and banned.

Why?

Is it a fear that this not so pretty version will taint the narrative their child tells? Is it a fear that this story will mimic the narrative the child tells themselves in their head? Will this be a story the chronically ill child will recognise as their own, but wouldn’t dare voice because the child already understands the rule? The rule that their condition impacts others more than themselves, and that they are just a part of someone else’s story – not a story in their own right.

It is an untold aspect of growing up chronically sick or disabled. This idea that the level of privacy you need is less, especially if the pretense of seeking medical advice is used. I am forever grateful that there was no social media around when I was growing up, because the last thing I would want is people being able to google me and find pictures of me in the midst of a medical procedure.

There were of course many times that my privacy was disregarded, that the narrative of my life became the topic of conversation for my parents and their friendship groups.

Being born with Imperforate Anus and associated recto-vaginal fistula should not be fraught with shame; but it is. It is a congential deformity that needs constant care, and is heartbreaking for any parent to watch their child be treated for.

Despite the level of complexity the deformity holds, the crux of the issue is that people born with an anorectal malformation (ARM), can’t evacuate their bowels in the same way that others can. Herein lies the issue.

We live in a society that likes to mock poo. Only, dirty and disgusting people shit themselves, or their drunk, or, or, or… It smells, it’s icky, and children ‘are cruel’ (a nice little catch-all that is used when people hear of those teased in childhood).

Toileting is private. We teach our children that. We close the door when we ourselves go. We afford ourselves and others privacy when we go to the toilet – that is, unless you have an ARM.

In that case, more people than required are told. More people than required have seen you on the toilet, have looked at your anus, have discussed your toileting processes and procedures, and talked of if and when you dirtied yourself, if you have gone, should you go, why don’t you try?

Suddenly, a child with an ARM, who is acutely conscious of the difference their toileting habits are to others, has to watch while that aspect of their lives is discussed, photographed and shared. The narrative become that of a sick child, a child who is unable to control their lives, a child whose parent has had their life changed irrevocably, a child whose identity is forged in shit.

The prevailing narrative becomes about the ‘special needs parent’ who lives a ‘special needs life’.

It is this that adults who have lived through a childhood with an ARM, who live a life with an ARM, warn about. We warn to keep some privacy, some dignity, some silence about the child who has this deformity. We warn, not because there should not be anyone raising awareness about Imperforate Anus, but because each child is entitled to their own narrative, not the one bestowed upon them by someone else; not one given to them at birth – an added extra that tagged along with the other deformities and stayed about to play havoc with their lives.

It is sad, infuriating even, when an adult with a disability or chronic illness, the same adult who has lived through, created their identity around and within this condition and disability speaks, they are told that their narrative is not relevant here. They are told that the dialogue they speak is blasphemy, is heresy, is inspiring a negative outlook. The warnings we offer are dismissed as old-fashioned, and that we must remember that ‘times have changed’. The prevailing narrative is this – that the condition lessens, that the condition is a physical ailment only, that the stress and anxiety associated with the condition or disability becomes less.

But it does not. While times have changed, and the ways in which the physical deformity is treated are arguably much better, the ignorance surrounding the mental anguish remains. It could be said that it is willfully ignored; but I like to think it is more hopeful, than willful.

The true narrative is disallowed. It is seen as negative, and while hard to hear, it is a truth that must be acknowledged.

The narrative of the person with the disability, the narrative of the chronically ill, is valid, and is vastly different to that of the caregiver, the sibling, the watcher. The narrative is this:

We are happy, resilient, optimistic people. You can’t live for decades with a condition, be alive after decades with a condition – without being this way. Do not mistake our realism with negativity.

The caregiver’s part of the narrative ends when they are no longer in charge of our care. Our part of the narrative ends when we die. Our narrative will be longer than yours. If ours isn’t longer yet, it will be – it is only a matter of time. To speak of our narrative as yours,  takes away our privacy -our rights. Your right to your story does not diminish the responsibility you have to us to ensure that my right is not reduced. It is, as we say, a fine line.

Lastly, living with something, day in – day out, takes a mental toll. Physical begets mental. Always. To suggest otherwise is naïve.

As a chronically ill child, as a child born with a series of congenital deformities that meant I grew into a chronically ill adult who lives with the effects of congenital deformities, my warning is this:

You telling your story, impacts our lives forever – until we die. Us telling our story does not irreparably affect your life. You do not lose jobs from your narrative, have people making particular judgments about your ability for life – for your desirability to life, love, purpose, education, status, and respect. You do not have to plan every detail of your day – for the rest of your life.

Yes, you might be concerned, you might be affected, you might be having trouble right now. But your narrative changes, our narrative does not. The only people who have the true narrative are the people who have lived it – not those who have seen it, so allow us to have the dialogue, allow us to have the voice.

You telling us that our narrative is wrong, doesn’t not reflect what you interpret the narrative to be, doesn’t reflect what you wish the narrative is/ was/ will be. It only serves to say this:

‘You there with the chronic illness or disability – yes, you there, you are not capable of describing your narrative, or understanding it, of seeing its importance to the greater narrative of life. This is something you do not have the capacity to do, and my narrative, my louder and more supported narrative, is the one the world needs to hear.’

And when you do this, you think you are helping your child, but you are not. You are putting your narrative above theirs. When others share their narrative, others who share more in common with your child’s narrative than your own, you shout them down as heretics, blasphemers, negative nellies, bigots, bullies, old-fashioned, unknowledgeable, not up-to-date … You do this because you need your narrative heard – we all do.

But your narrative is heard – it IS the prevailing narrative – the world ALREADY sees, hears and understands your narrative.

Your child is already schooled in your narrative and knows how and why theirs is different. People who have nothing in common with you ‘get’ your narrative.

People who have something in common with us – children who have the same disability or chronic condition as us, the adults who were disabled children, who were chronically ill children, the adults who have lived this life  – these people, your children, hear you tell us that our narrative is wrong. These children learn that the narrative that has the most commonalities with theirs is wrong, is blasphemy, is heresy, is negative, is life ruining; these children hear that their narrative will not be heard by you. These children hear and see that their need for privacy is less than your need to tell your story.

Never, ever discount how much damage that can do.

Words by Christi Bezemer

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