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Life with Rett Syndrome: How other people view us

Beth Johnsson

hannah 225x300 Life with Rett Syndrome: How other people view usI was planning lessons for a year 7 class today, about short story writing and how to create a three dimensional character. One of the ways we learn about a character, I teach them, is through what other characters think, say and feel about them. It occurred to me that this is perhaps at odds with the rather modern concept that we should worry less about what others think and instead be brave and confident in ourselves. It’s pretty obvious that I do worry; if I didn’t, I probably wouldn’t be offering my life and thoughts for public judgement, or agonizing endlessly over whether my words might offend. I am often told (by others, an oxymoron in itself?!) that I shouldn’t let it trouble me, but I wonder how possible that really is if other people’s thoughts, feelings, reactions to us, are part of what makes us three dimensional?

Parents, I think, are particularly vulnerable to others’ judgements: nothing attracts attention like a child having a public meltdown. I’ve never really understood that need to stare at someone else’s life, as if you have nothing imperfect in your own, but I accept that we are curious creatures and others’ lives can appear infinitely more interesting than ours. But it’s a thin line between curiosity and rudeness, and if you’re someone, like me, who can’t help but care what others are thinking, the stranger’s stare is hard to ignore.

Before Rett Syndrome started to steal her mobility and her hand control, Hannah’s perpetual and loud vocalizing would attract more than the occasional ‘lingering gaze’. She would shout her way around town and I, depending on the amount of sleep I had not had, would either look determinedly anywhere except at those who stared, or defiantly right into their eyes. Neither tactic helped. Hannah had no other form of communication, shouting expressed her entire range of needs, but since she looked ‘normal’ and was sitting in a standard child’s buggy, it seemed incomprehensible to others that she might, in fact, not be ‘normal’, or that perhaps it wasn’t their business either way!

One particularly shouty afternoon, an elderly couple walked past us and the man remarked loudly ‘can’t you shut that noise up?’ That noise. Not even the decency to refer to my daughter as a human being. Thankfully, to reaffirm my faith in humanity, a young woman who could see me simmering, came and reminded me that such ignorance was his problem, not mine.

In fact, his ignorance did me a favour: tired of being brought down by strangers’ opinions, by retrospectively replaying the perfect comeback in my head, I decided to have the comeback ready and waiting in my pocket. I typed up cards carrying a brief explanation of Hannah’s condition, a deliberate non-apology for the disturbance she may have caused, and the website address to read more. I carried them around like armour; just knowing they were there made me braver, less anxious. I knew my comeback was on standby and, if nothing else, they would allow me to walk away knowing I had preserved my daughter’s dignity and my own.

Typically, being the somewhat contrary child she is (nothing to do with Rett, she just takes after her mother!), Hannah toned down the shouting as soon as my armour was on: I almost willed her to scream more so that I could educate the masses! She did give me some chances though: once, the recipients were a family having a peaceful cafe lunch. The daughter was around Hannah’s age. I was in the same cafe but a different world, queuing for a takeaway tea whilst Hannah demonstrated her full vocal range. She wasn’t unhappy, she just wanted to let everyone know she was there; everyone did. Mum, Dad and daughter were staring, clearly incredulous that rather than trying to ’shut that noise up’ I was instead encouraging Hannah’s communication efforts (if your daughter can make only one sound, you let her). On my way out, I silently placed my card on their table and walked away. A few moments later, the mother caught up with me and said ‘I’m sorry’. I don’t know if she meant she was sorry for their insensitivity, or for my situation, it didn’t really matter. I just hoped that it had made them appreciate the moment they were sharing a little more.

Interestingly, once Hannah’s ‘normal’ buggy retired and a wheelchair became unavoidable, the stares and the comments changed. The looks turned from disapproval to sympathy, the comments from derogatory to complementary: ‘isn’t she pretty’, ‘what a lovely smile’. It reminded me of when we had to shave off her hair: she could be in the swimming pool wearing a pink swimsuit and pink arm bands, and still people would call her a boy. Peculiar, how stereotype programmed we are, that it is easier for us to imagine a boy in a pink swimsuit than a girl with short hair; or a healthy child screaming incessantly, than a disabled child using a standard buggy.

I’d like to say that these days I worry less about others’ opinions, that I have necessarily developed a hardened shell through which the stares and the tuts cannot penetrate. Alas, I cannot, although I think the nature of the worry has changed: will others judge that we are often found in Starbucks on a Saturday morning with two sleeping boys and an iPad-watching, carb-eating Hannah? Perhaps I should make cards explaining that the iPad and food are the tools with which we cling to our weekly dose of tea and calm. Or perhaps I should just stop worrying and order a muffin! Wrongly or rightly, I do care what others think, and of course the opinions of those I respect and love matter immensely. If the learning I plan to impart to Year 7 is true, then this is good news: it means I am three dimensional, after all!

For more information visit www.reverserett.org.uk

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  • andagain

    When you are a stranger they have seen for thirty seconds, and might see for another minute or two? Like a hundred other strangers they saw today?

    Strangers can deal with you based on very little data, or they can completely ignore you. If they had had an opportunity to gain much information about you, they wouldn’t be strangers.

  • http://www.facebook.com/antibanality Mshel Daily Digest

    People who live in Glass houses…

  • http://www.facebook.com/antibanality Mshel Daily Digest

    Oh stop trolling me and get back to work!

  • http://www.facebook.com/antibanality Mshel Daily Digest

    There you go Judging and then trying to take some sort of moral high ground from that ditch! I have had plenty of experience of disabled haters, my brother has Cerebral Palsy! I also know hypocrisy when I see it and you young man, are one ignorant stupid hypocrite!


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