Inclusion is an illusion

IN THE wonderfully acerbic political TV series, The Thick of It, there’s an episode involving a ‘Super Schools Bill’, which proposes the closure of special needs schools across the UK. The hapless cabinet minister who must argue in favour of this integration agenda is Hugh Abbott (Chris Langham).

In this, Hugh is faced with a moral conundrum. He doesn’t agree with the Bill and his senior special advisor, Glenn Cullen (James Smith), has a son who attended a special needs school and flourished there. It’s a personal thing.

Glenn’s catchphrase to sum it all up is simple: ‘Inclusion is an illusion’.

But poor old Hugh doesn’t have the luxury of holding to a thing like principles when it comes to matters of state. Instead, he is forced by the government’s pitbull-esque director of communications, Malcolm Tucker (Peter Capaldi), to support the Bill.

In doing so, Hugh betrays his own beliefs and sells out Glenn and his son by using their personal story to argue for the closure of special needs schools. All in a day’s dirty work for the Secretary of State for Social Affairs and Citizenship.

Inclusion is an illusion. I hadn’t seen this episode for a while but I was suddenly reminded of Glenn’s line last week when I made a foolhardy call to a local activity centre to ask about my six-year-old daughter Amelia joining one of their classes.

Early in the call I volunteered the information, as I always do, that she is deaf and autistic, to be clear about her needs and advance the conversation about how best to include her.

For a minute it all sounded pretty positive. The centre had a separate class for children with ADHD/ASD with an Occupational Therapist on hand for support. Great, I thought, that might be better for Amelia than the regular classes, at least to begin with.

But I was misguided in that momentary feeling of positivity. Amelia, it turns out, would not be eligible to attend either kind of class. The doors I had hoped to open for her swiftly closed, one after another.

About her deafness, I was asked how far background noise would impact on her ability to hear. This was not so the noise could be controlled or limited in some way. It was to point out how the environment would not be ‘appropriate’ for my daughter.

I hurriedly explained that while Amelia is deaf, she wears hearing aids, can speak quite well and follow most instructions and that I wasn’t expecting anyone to be a fluent Auslan interpreter for her. I just wanted them to know that standing near her and making sure she could see the face and hands of people speaking would help her understanding of any directions in the class.

But her deafness turned out to be a deal-breaker for this centre. They could not be convinced that it wasn’t an insurmountable barrier to Amelia’s inclusion in the program.

To me, it’s simply a fact about her that requires a little effort to understand and accommodate. After that, she’ll do the rest because she’s tough and ace and super adaptable.

I know that people don’t often encounter deafness in their day-to-day lives, but there’s an unsettling ignorance that surrounds its understanding in the broader community.

It’s unpleasant to confront this as the parent of a deaf child, but there’s a spectrum of misunderstanding that at its lower levels assumes that it is ‘too hard’ to communicate with a deaf person (so we won’t try).

At the extreme end of this spectrum reside the people who mistakenly believe that deaf people are somehow restricted in their intellectual capacity. ‘You don’t communicate the way I do, so I see you as lesser than me’. Not different, but reduced.

Then I was asked if Amelia attended a mainstream school – the children in the special needs class all do apparently. Well, no, I replied, she goes to a school for deaf children. Then I was asked a theoretical question, about how Amelia might cope in a mainstream school.

How to answer something like that when she has never been schooled in a mainstream environment? That’s when my agitation, which had been like a worrisome tickle at the back of my neck from about the four minute mark of the call, really started to ramp up.

My pulse had quickened and a slight tremble rippled across my arms, my back, like a warning on the surface of my skin.

As the call neared its conclusion, I realised that it didn’t really matter what I said to the person on the end of the line. Every answer I gave presented yet another obstacle to Amelia’s inclusion. Another reason to say ‘no’.

Instead of answering questions about how they might help, I felt as though I had inadvertently participated in a survey about all of my daughter’s faults. It made me feel sick.

This had honestly never happened to me before, so I was more than a little shocked. Most places in my experience will try and meet you and your child somewhere in the middle, somewhere fun and safe where everyone’s needs can be met.

Hamming it up at the St Martin's Youth Arts Centre (2013)

Hamming it up at the St Martin’s Youth Arts Centre (2013)

The St Martin’s Youth Arts Centre invited me to sit down with them for an hour to learn all about Amelia and how their programs could work best to include her fully.

The Northcote Aquatic and Recreation Centre has hired an Auslan interpreter so that deaf kids like mine can access swimming lessons in the only language that’s going to cut it in the pool. They also committed to one-on-one teaching when they were informed of Amelia’s autism.

Just a few cool examples of how NOT to alienate small children and their families.

The person from this centre gave me nothing, no extension of flexibility or sensitivity, just an empty offer of ‘wait-listing’. Our case was lumped casually in the too-hard-basket, and that, as they say, was that. I hung up mid-sentence, mid-sob as the rising lump in my throat betrayed me and echoed its hurt down the line.

But I couldn’t just leave it at that. I was still shaking as I sat down to write the centre a message of ‘feedback’. I’m not interested in disclosing who they are because I just read Jon Ronson’s important book about public shaming and it’s an unedifying road that will serve no grander purpose.

I will, however, share my emails (names redacted) here because I think it’s vital to show the true cost of these negative interactions, where inclusiveness was hoped for but in reality denied to a child with special needs:

Email # 1

Hi there, I called today to see if my 6 year old daughter who is deaf and autistic could come and try some redacted classes with you. She loves to redacted and I thought it would be good for her physical and social development. I was told that she is not eligible for either redacted or the redacted because of her special needs. It is pretty devastating to have your child turned away from fun activities on the basis on her disabilities. It’s great that you have the redacted group for ASD/ADHD kids but apparently my daughter is not eligible because she goes to a special needs school for deaf children. So you cater to special needs kids, just not my kid? I find it hard to understand. Amelia has participated well in programs run by places like St Martin’s and they welcomed her with open arms. She is a lovely, bright girl who has challenges but always benefits from new learning environments. I’m really disappointed – you have no idea how awful these kinds of experiences are for parents like me. Thankfully, most places operate in the true spirit of access and equity. Thanks for taking the time to read this feedback. I hope that other kids might benefit from this, even if my daughter is not welcome at redacted. Sincerely, Melinda

I did receive a quick response, but it was pretty cold and informal, sticking hard to the company line. In summary, they understood how ‘frustrating’ it must be for parents like me, but they just couldn’t accommodate Amelia right now.

Frustrating? Like when you can’t get your car started in the morning or you miss a train? Yeah, I don’t think so. That inadequate word inflamed my anger even further, so after a few hours of grumbling around the house and chewing the inside of my mouth to shreds, I emailed them again:

Email # 2

Hi redacted,

Thanks for responding to my email. I guess I am expressing more than frustration and the reason for that, whatever your company’s capacity to deal with different needs in children, is that you wrote off the idea of Amelia joining in on the basis of very little information. I said ‘deaf’, ‘autistic’ and ‘deaf school’ and after that it didn’t really matter what that means for Amelia in practice and how far she might be able to participate with only a little bit of prompting.

You concluded that her needs were more severe than is currently accommodated within your programs, and I just can’t accept that that’s fair. I would have loved it for instance if you had suggested that I bring her in to meet someone from redacted to get a sense of her, and then decide if she needed to be waitlisted for some other kind of program. The deciding factor of Amelia being in a ‘special school’ – and I’m not sure that a deaf school fits within that category – is a strange one.

There are plenty of ASD kids who attend mainstream schools but they often need at least some in-class support to do that. Amelia goes to school without the need for any extra help at all. She works on the same curriculum as every other child in the state, the main difference is that she learns bilingually, in Auslan and in speech. To me, it makes more sense, and is far more equitable, to assess the actual needs themselves, not which school system has been chosen by parents as the most appropriate for that child for a whole range of reasons.

Obviously, I wish that you had handled my call with a bit more of an open mind and frankly, a bit less ignorance of how special needs children function inside and outside of mainstream/special schools and programs. I have never been told that Amelia’s needs, such as her deafness, make her ‘too hard’ to deal with, which is the real way of saying ‘we can’t appropriately cater to her needs’. I mentioned them to you mainly so that her instructor/s would have enough information to be sensitive to those needs in practical ways, like making sure she could see the person speaking, and so on.

You would be surprised just how resilient and adaptable a child like Amelia with her unique set of needs can actually be.

Regards, Melinda

Amelia, signing to her swimming teacher (2015)

Amelia, signing to her swimming teacher (2015)

Now I felt better, as though I’d fully advocated for Amelia even if the result was still the same. I might not always be able to knock down the walls that get in her way, but goddamn it, I will always let people know when their stupidity and heartlessness has let us down.

Soon after, I got a call from the company owner and we actually had a good chat about how to properly include someone like Amelia in their activities. It was the conversation I’d expected to have at the outset.

And this person apologised, saying those magic words, ‘I’m sorry that you had such an upsetting experience’. It didn’t dissolve my afternoon of distress, but I did appreciate it.

By this stage though, I wasn’t looking to convince them to let Amelia join in – I don’t want her anywhere near a place that takes such an appalling view of her needs – but I did want the owner to understand what might have worked better in our case. How they might handle future Amelias.

Like, if they had just invited us to come in for a short meeting, we could have had an open and honest discussion about the best kind of class for Amelia. They could have met her rather than judging her abilities over the phone.

Maybe we would have decided mutually to come again at a later time, but really, we’re not solving world peace here, are we? We’re just talking about letting a little girl try something on for size to see if it might have fit.

Instead, they closed their minds to her sight unseen, which is a great shame. Because Amelia’s such a fabulously fun chick, so interesting and full of whimsy. Some people regard her as an asset to their groups, even a leader. This centre will never know her and it’s one hundred percent their loss.

Barriers to access are real and they do hurt. Take note people running programs for kids: pump up your heart valves and have a think about how your special needs policies impact on people who are already doing it pretty hard.

We’re all a part of the same community and when we feel brave enough to step out of our houses to have a go at something new, please hold our hands instead of turning us away.

Inclusion doesn’t have to be an illusion, and you might find that instead of a child being ‘too hard’, they will teach you something priceless about what it means to be alive.

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Eyes wide shut

Amelia ‘papping’ the Pa-parazzi (get it)

WHEN I look at my daughter Amelia, I see lots of things. I see a wonderfully healthy, milky-skinned towhead with dark, dark eyes.

My eyes rest on her all-terrain body some days and I conjure up images of her in a field, pausing from her work to glance at the sky, the sun, like a stocky Russian peasant, built to withstand the elements.

Come rain, hail or shine, Amelia was made differently to most people, but man was she made to last.

Through my eyes, the most subjective of prisms, she is the most beautiful child I have ever seen. If I look at her for an hour, a month, a year, there will never be enough time to really see her.

I love to look at Amelia’s blonde hair falling in rolling, lazy waves down her back. Tucked behind her ears, some days it’s easier to see that she is wearing hearing aids. To see the physical sign of an internal part of her that doesn’t work the way it should.

Her autism is not so obvious to the naked eye. It’s not etched on her skin or reflected in some mechanical appendage that helps her to think or feel. Amelia doesn’t wear a t-shirt reclaiming the word ‘Aspie’.

You can’t see her autism in obvious ways, but I always know it’s there. I see it in her face sometimes, when her gaze drops below mine, and try as I might to regain her attention, she’s quietly slipped off to some interior room, far from me and my ever-prying eyes.

No matter what the signs – violent temper, crushing anxiety, rampant hoarding – I see autism but I still see Amelia. I never lose sight of her, working so hard to push her little barrow uphill. I see all that she is and I feel I truly know her. I know her and I understand.

Amelia has many people in her life who look past her ‘special needs’ and see only what is genuinely special. What is unique about her. The madcap sense of fun, the tenderness, the infectious lust for life.

What they see is mirrored in my own eyes and in my heart. That mirroring gives me strength and so much joy.

Yet now and then in our travels I am forced to view Amelia the way that other people sometimes do and it makes me turn my face away. I can’t bear the sting of their unforgiving eyes boring holes of judgement into her. Into me.

When she is suddenly, inexplicably loud or clumsy or different – incongruous – in a public space, I feel strangers’ eyes flick up and cast their reductive light over her. Mouths curl up in a mute grimace of distaste. I read their looks and expressions and interpret the words left unsaid.

‘Oh, what a weird child. Look at the naughty child. What on earth is wrong with that child?’

And who am I? It’s simple: I’m the bad parent.

I hate those staring, ignorant eyes because for a second I step outside myself and I judge Amelia too. In that moment I see only her flaws, the things that cannot be contained or controlled. And it hurts my heart.

My inner voice pleads with her, ‘Please won’t you just be calm? Why can’t you walk properly? Stop yelling, just stop it!’

‘Why can’t you just be normal.’

Then there are the people who don’t see Amelia at all, who have trained themselves not to see what is different about her and to try to understand. They focus their eyes on the wall above her head or on the easy going child instead.

They ignore her and I despise them too.

Because they looked at Amelia, but they did not really see her. They saw only gaps and lack and the spaces in-between where a different child might be. And they decided things about her that are only a tiny fraction of who she is. Who she will grow up to be.

I’m not blind to the hardships looming up behind Amelia like a shadow she can’t shake. I know she is sometimes rough and strange and hard to take. I know that because I see how being around Amelia makes some people feel: uncomfortable, nervous, frustrated.

It’s written in their eyes.

But I can’t let those looks and the thoughts that sit behind them slip under my guard too much. They strike me in my nerve centre, and I absorb little shocks and bouts of pain, but they do not defeat me. They could never.

For me, there is always great solace to be found in looking up and seeing Amelia again, maybe running down a path to meet me after time spent apart. She throws her glorious head back and yells my name at the sky and I see only beauty and all that is right.

There are no shadows here, save the ones cast by the sun, warming the head of my sweet peasant girl with her golden hair and those dark, dark, eyes.

The ABCs of number ones and twos

The burning eye of judgement sees all

The burning eye of judgement sees all

Toilet training is one of those mountainous milestones that looms for many parents like some evil lava-spewing edifice from The Lord of the Rings.

And the burning eye glowering above it is the collective judgemental stare of the people who are sure they know better than you about how to make it to the top.

Let me clue you in on a little secret that isn’t written in Elvish nor does it require fire to bring out its one true message. THEY DON’T.

Our personal story about this much-discussed but frequently misunderstood subject has all the hallmarks of an epic quest. Intrepid (read defiant) protagonist? Check. Seemingly insurmountable mission? Yep. Many years in the making and way over budget? Even Peter Jackson’s accountant would have blanched at the nappy spend.

My daughter Amelia just turned five and she has only been what you could officially term ‘toilet trained’ for about 10 weeks. We got a certificate for her birth. Something like an Oscar might have been appropriate for this milestone.

It has been a very long road marked by potholes, rugged terrain and a lot of frustration; until Christmas time just past I honestly never thought we would reach the end.

At about two years of age, when some people begin to encourage their toddlers to go the toilet (the phrase ‘go potty’ will not be in use during this post), we found we had bigger problems on our hands.

We discovered that Amelia had a significant and permanent hearing loss in both ears. For this reason she had no speech except for a few broken sounds. Language had failed to penetrate her ears and her mind in any meaningful way. She was now in a state of delay, so soon it seemed after her momentous arrival.

And my god was she angry about it.

As you can imagine, toilet training was not very high on my list of parenting priorities at this time. If I had a list at all, regular items of childhood development were on the back of the page under the heading, ‘I’ll get to it when I can breathe, when this freefall ends. When I don’t feel like I’m drowning’.

The urgent need to get hearing aids fitted for Amelia, to help her to listen, to speak and sign, all outweighed something as inconsequential as her toileting habits or how long she would wear nappies.

That didn’t stop the helpful suggestions from a small but insistent peanut gallery that ‘we really should (a hateful word in the wrong hands) start trying to train Amelia to use the toilet’.

It was like being stopped mid-spin in the centre of a tornado and scolded about not making the beds before I left. I bet Dorothy Gale didn’t have to put up with that kind of nonsense.

No amount of explanation from me about the futility of training an enraged and anxious child with almost no language how to do anything at this stage seemed to dissuade the toiletariat from their superior view.

So we agreed to fervently disagree.

The next year was spent in the haze of medical appointments, meetings with social workers, teachers of the deaf and sign language tutors, as we grappled with this new world we had arrived in.

I did try to put Amelia on a potty and dress her in underwear but she was as far from being ready for toilet training as Neptune is from the Sun.

I didn’t worry about it too much, unless the gallery popped up to remind me about it. You know, just in case I wasn’t tied up in enough knots worrying about my daughter’s progress and behaviour. Her future.

As a family, we preferred to celebrate genuine triumphs, like the first Christmas after Amelia received her hearing aids and she proudly sang a lullaby at the dinner table. Or any new word or sign she learned to repeat and understand.

Or how diligent she was at wearing her aids all day, every day, giving herself the strongest chance to make up for lost time. She was tough on us about everything else, but about her aids Amelia has never been anything but wonderfully compliant. And of course, she was never at risk of throwing them in the toilet.

Besides, she slept well through these years and usually ate everything on her plate as though it was her last meal on earth. We thought we were doing pretty well as parents, all things considered.

Waging a battle against great odds

Toilet training: A battle waged against great odds on the homefront

But the spectre of toilet training lies in wait in the back of a dark cupboard somewhere, knocking like hell to get out. You’ve squashed it in there behind the musty old linen you need to throw out and the clothes you can’t wear anymore, but you know it’s there. There’s simply no forgetting it.

That’s what really gets to me about the people who feel the need to keep telling you should ‘do something about it’. Like you aren’t already lashing yourself with 1,000 bloody cuts of self-doubt that your approach is wrong or isn’t working and will this blessed thing ever happen?

It’s the same with crawling and walking, all the key milestones (are you sure they don’t mean millstones?). There are always children who will reach them first and super early. Good on them. But equally there will be others who take longer, in some cases years longer, to hit their straps.

You need those polar extremes to form a broad spectrum of normal development. But it can be hard to feel relaxed about this when you’re flailing around at the deep end calling for a lifeguard and there’s only some preachy old washed up surfer standing above you waxing lyrical about the tides.

As Amelia grew older and was able to communicate better and understand more, we tried many strategies to encourage her to shed the nappies for good.

Confiscation of pull-ups, reward charts, bribery, visual aids, watching her cousins ‘do it’, showing her books about characters going to the toilet, asking her childcare centre to encourage her (sometimes neutral but trusted adults have initial success over parents), anything we thought might work.

But she hated the idea of it all so much I had to keep abandoning it, lest we killed each other in a violent battle of wills. The mere mention of the word ‘toilet’ would send her into incredible paroxysms of rage, which in the confined space of our tiny bathroom was a combustible scenario.

I admit I would sometimes lose my temper and try to hold her onto a potty or toilet but this was an utterly ridiculous and upsetting tactic. You can’t physically force anyone to go to the toilet if they don’t want to, and Amelia REALLY didn’t want to.

I would watch her stand in fear on those occasions when her nappy was removed, and if she had an accident she would shake with revulsion at the sensation on her body and scream and cry like she was being tortured. It was awful.

Of course, I didn’t know then that she had undiagnosed autism spectrum disorder (ASD) – that had to wait until she was about four and a half – but I know my mind flitted over the possibility more than once during this time.

Amelia’s extraordinary defiance, her anxieties, obsessive compulsive tendencies and curious sensory needs and responses were a deadly combination when it came to achieving ‘timely’ toilet training.

But linking these traits into her ASD mid-way through last year helped me to understand more than ever before that you just have to wait until your child, whatever their personality, is truly ready to make developmental leaps. They WILL get there.

And there are positive signs of progress, it’s just hard to see them when children younger than your own seem to be somersaulting through hoops to use a potty without much fuss.

It was progress when Amelia relaxed enough to wear underpants during the day all of last year to kindergarten. And though I worried about her little kidneys, it was progress that she was able to ‘hold on’ all day until she came home and jumped into her night nappy for bed.

Her readiness was a long slow bow drawn in a wide arc over five tumultuous years but even we got there in the end – and here’s the sugary centre to this hitherto sour tale.

It started just before Christmas when we met with Amelia’s school and received wise counsel about the process of starting prep in the New Year.

The information night included a gentle but firm note about toilet training and the hope that most of the children would be independent on this score by January.  I took a deep, inward breath and steeled myself for the summer holidays ahead. Like every year before this one, I thought “maybe this time…”

I abandoned random ‘strategy’ and threw off the shackles of good sense. Yes, I did what any decent parent would do when you’ve reached the end of the line and you need a result: I LIED.

“Amelia, when Father Christmas comes this year, he is going to take your baby nappies away because he said you’re a big girl now and it’s time for you to go to the toilet”.

Her eyes widened at this news. She asked me to repeat it a number of times. I was sure she had taken it in, but would it work?

Love your work Santa.

Love your work Santa

Christmas Day arrived and Santa was true to his word, swapping out presents for nappies in the most one-sided trade since the Fremantle Dockers decided they could live without 340 games and two Norm Smith Medals from Andrew McLeod*.

The day was hectic and at first we hesitated in the execution of our plan. A night nappy was proffered at some stage to get us through events and I thought we might have blown it.

The following day was long and hot and we stayed home in anticipation of either a lot of screaming as nappies were demanded, or maybe, just maybe, a breakthrough.

As is typical of these historic family stories, I was not present to witness the huge moment when my girl finally went to the toilet at home for the first time in her life. I was in another room when I heard her calling her Dad’s name. Then I heard him calling me in excited tones.

I ran to the toilet to find Amelia sitting there, a little shocked at herself but mightily pleased. By George she had really done it. And her Dad and me stood there and cried behind our hands, in joy and release from the worry that it would never happen. That we would be sending her to high school in adult nappies.

Over the next few days and weeks my hilarious child treated the entire thing like she’d been at it for years.

She would throw a carefree hand over her shoulder and shrug, “I’m goin’ to the toilet, be straight back”. We would fake nonchalance and stare lightning bolts of delight at each other across the room.

It was hard to believe but before the school year was due to commence, Amelia was toilet trained and since that first day she hasn’t baulked at it or taken a backward step. Because she was finally ready.

It’s amazing to me the amount of energy we have expended in stressing about this particular milestone, in and around the genuinely difficult challenges we have faced in recent years. Enough to power a wind farm or a small helicopter.

Because if it doesn’t come quickly or easily to your child it seems to be the one area where the greatest amount of judgement is served up to parents who are already doing their best. If that doesn’t add to existing stress levels then I don’t know what will.

Even after we hit pay dirt with Amelia and anticipated some praise for her or at least shared excitement, our reliable peanut gallery gave us a bit of, “well, I did tell you it was a good idea to train her but I guess you had other things on”.

Other things on. Yes, you could say that.

As domestic battles go, toilet training was hard fought and we sustained more than a few casualties of confidence. But it’s not Agincourt, is it? It’s not life-threatening and it’s far from central to the wellbeing of a deaf child with autism. Or any child for that matter.

Yet we filled the problem of toilet training up with concrete and made a hideous skyscraper out of it; a massive grey bogey man to haunt us when we had already confronted far scarier things in the daylight.

Thank goodness Santa was around to turn him into rubble or I don’t know what I would have done. And Amelia still asks me to tell her the story about how dear old Father Christmas came and took her nappies away in the night, ‘Because I’m a big girl now’.

* I must give attribution here where it is due, to my ever helpful husband who lent his extensive knowledge of all things footy to this paragraph.

What happens at the park, stays at the park

The calm, solitude of time spent at the park

The calm, solitude of time spent at the park

Having a child who is deaf has mostly hardened me to the questions (well-meant and not so much) that people tend to ask in shopping centres, waiting rooms and other public spaces when the topic comes up in passing conversation.

In an earlier post, I covered some of the so-called ‘dumb’ questions that we encountered in the time following Amelia’s diagnosis.

Since then, I think I have developed a second, tougher skin that has helped to guard me against genuine offence or my own hyper-sensitive reactions.

Two years down the track from the moment we emerged from the chrysalis of one life pre-diagnosis and emerged somewhat bruised into another, I have developed ways to evade questioners when I’m not in the mood and found better ways to answer them when I am.

It really all depends on the day, which way the wind is blowing and the nature of the approach. If a person is having a good old Aussie crack at trying to understand something new, then clumsiness is certainly not a sign of bad intentions. It just means they have minimal exposure to the intricacies involved.

The keys to ‘getting it right’ are the demonstration of qualities like restraint, thoughtfulness and compassion from the questioner. Questions themselves are not the enemy – a communication started with care, that is watchful of the signs about how the questions are being received, is less likely to tread on vulnerable toes.

I’m not hanging around waiting for people to ‘get it wrong’ so I can rain blows of righteousness down on their heads. Well, I used to be, but now I’m more interested in solitude on those days when Amelia and I can just be, without questions, tests, diagnoses and labels disturbing the peace. Yes, solitude or privacy or anonymity, even when we’re in public.

So I’m not exactly sure why I was so bothered by the woman – a fellow mother – I encountered last week at the park where Amelia and I went for a run in the winter sun. But there was something different about the way she came at us, with her machine-gun mouth, poised to fire as many questions at me as she could muster before it was time to re-load.

It was, on reflection, a combination of the level of her intrusion into our hard-won solitude, her condescending tone, her incessant questions and her lack of reading of my mood – in my eyes, my voice, my body – that made me feel that enough was enough.

I’ll try to keep it short, but here’s how our meeting played out.

I was signing something to Amelia as we walked over to the swings and this woman, also with her kids at the swings, said to me, “Oh it’s really great that’s you’re teaching sign to her”.

It’s not unusual for people to remark on our use of Auslan – I understand that it is a novel sight, and to many a beautiful language to behold, so I don’t mind being asked about it.

Usually once people have chatted with me about the topic and some related things for a few minutes, they move on to the busy job of watching their own children navigate the pitfalls of the playground.

And then Amelia and I are free to return to our blissful solitude.

To this woman’s opening question, I replied, “Yes, it’s really important for us to sign with her”.

My response seemed to confuse her for a second, but I wasn’t sure why. Then her tongue tripped awkwardly over the words, “Oh right, does she have some kind of disability or difficulty…or something?”

“Um, yeah, she’s deaf, so she is bilingual – she speaks and signs”.

“Oh, right, ok, wow”.

“Yeah, I wouldn’t choose to sign with her unless it was a necessary part of her life”.

It dawned on me that she had not been asking me about sign language because she immediately associated it with deafness – as the language of the Deaf.

No, she was congratulating me because there are people out there for whom teaching ‘Baby Sign Language’ (not Auslan) to their infants is an optional luxury, not a necessity or a defining part of their child’s identity as it is for us.

That’s a new one, I thought. This was the first person not to assume that Amelia was deaf after they saw her signing. It was an odd start and it went downhill from there.

The woman then began peppering me with a barrage of questions over the next 15 minutes about the diagnosis, my feelings, behavioural problems, hearing aids, deaf primary schools, and on and on. It was more interrogation than conversation.

There were no queries about my daughter’s age, name, habits (standard park chatter), just an endless quiz about her deafness. I tried in vain to steer her away from the topic, to avoid her, but it’s a small park and there was nowhere to hide.

She also ventured a number of uninvited statements about how she imagined Amelia’s deafness had affected me, such as “Ohhh, how heartbreaking for you,” or “You poor, poor thing”. I don’t think I cut a particularly forlorn figure at the park, but what do I know?

It all went way past my personal mark of ‘too much’. It’s an invisible line, sure, but most people seem to know where it is.

My answers became increasingly brief, curt, I turned my back, anything to send the signal that the subject was closed, but she wasn’t reading me and I didn’t want to have to be more explicit. I just didn’t feel like expending the energy.

When she wasn’t speaking directly to me she was in the background loudly telling her kids all about Amelia, the deaf girl. She adopted an affected teacherly tone to say things like “Honey, do you know what DEAF is?” Then she reminded them about a story featuring a deaf turtle from a book they had at home. It was excruciating.

I just kept thinking, dear god, please make this woman go away.

Thankfully, a parent we know through Amelia’s childcare came over and started talking to me about ordinary things, which broke the park-hold the woman had on us until then. She drifted off and our privacy was restored.

I didn’t want to have to fire up and be rude by saying to her “Please don’t take this the wrong way, but we just came here to enjoy ourselves, not answer question after question about deafness and listen to you ‘educate’ your kids about my daughter like she’s some kind of ‘special’ case”.

And anyway, I don’t believe the onus was on me to point out how far she was pushing the boundaries of decent behaviour and I’ve come too far to let people like her bring out the worst in me. When I cross that line myself, it comes at a cost – giving in to anger is usually more upsetting than whatever I’m reacting to.

Throughout the conversation it seemed as though the woman was trying to prove just how ‘right on’ she was about the difference we introduced to the park when we stepped onto the tanbark that morning. “Look how tolerant I am, with all of my probing questions, I’m not shy about disability!”

Unfortunately, her tactless, dog-with-a-bone approach had the opposite effect, making me feel harassed and uncomfortable. I wasn’t upset as I might have been a few years ago but the unrelenting tentacles of irritation curled around my mind and stayed there all day (I wrote an excoriating post when I came home but it was not fit for print).

I had gone out with small intentions, which included Amelia and I maintaining our status as the unexceptional mother and daughter at the park, but the woman was determined to mark us out as something else; something reduced within the limits of her too-bold attitude to the private lives of strangers.

It’s possible I’m being too harsh, but in life you have to be guided by your own thoughts, feelings and responses. It is not for me to re-cast the interaction as something other than what it was – an unwelcome disturbance to the peace of holiday solitude.

I’m glad to say that this type of negative encounter doesn’t happen too often, if at all. Most people understand how to balance their curiosity against the need for discretion.

The ‘rules’ aren’t obvious to everyone, and I understand how tricky it can be, but it’s not that hard, is it? Just imagine how you would like to be asked about deeply personal, complex things (cautiously) and have your life commented on by someone you have never met (sensitively) and then, simply do the same for everyone you meet. Provided your baseline is a kind-hearted one, I suppose.

And always look for signs of discomfort or unease, and when in doubt, begin by saying, ‘Do you mind if I ask you about…?’ before you go hurling question Frisbees across the park when no-one asked to play.

Recommended further reading:
Facing the crowd: managing other people’s insensitivities to your disabled child by Deborah Fullwood and Peter Cronin (first published in 1986, it is still relevant today)