Downright Joy

Discovering joy in unexpected places – a journey into parenthood and Down's Syndrome


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Turned out nice again

If there’s one topic of conversation that we Brits do well it’s the weather. I wonder what on earth we would talk about if our weather was always the same. Without this subject, I fear we may never talk to our neighbours or people we meet ever again!

Picture the scene, a busy Post Office, in a suburban town in the U.K.

A queue. Oh we do those well too, queues. Usually in silence and often impatiently. Avoiding eye contact and hoping that no one invades our personal space. Unspoken rules of being British, and, if you are a visitor to these shores or have made your home here then you will have possibly been on the receiving end of one of our glares or tuts of disapproval if you dared to get any of this wrong. Please accept our apologies if this has happened to you. We don’t mean to be so rude. At least I don’t think so.

But you are not alone. My daughter, who has Down’s syndrome, hasn’t learnt those rules either. And I hope in some ways she never does. As we took our place in the queue, me standing and Hazel in her wheelchair with shiny bright pink wheels, waiting our turn, she pretty much broke every one of them.

Firstly, she cheered as we went in, hands waving frantically. Everyone turned and stared at us.

Ssssshhhhh, they said, not actually saying a word.

Secondly, she laughed. Loudly.

Giggled.

At what, I have no idea. Maybe the fact that there were lots of people all standing there saying nothing at all was very funny.  It is, if you stop and think about it.

The Post Master definitely smiled, I caught his eye from my place in the queue.

Cashier number 2 please.

Two more still in front.

A commotion behind us. The whirr of an electric wheelchair. Not pink and pretty, but cumbersome and clunky.

The silent, staring, glaring faces turned again. Then turned quickly back for fear of making eye contact with its occupant. Letter in one contorted hand, control stick in the other.

Fear.

More silence, if there is such a thing as more silence when you already have silence. Relief that they were ahead and not behind was tangible.

I moved her pink wheels to make room in the cramped waiting area for his black ones. As I did, she broke another rule. Or was it a barrier? She reached out her hand and placed it firmly on his knee. And, in a second, the rule was broken, the barrier lifted.

“Hello”, he said

“How are you?” He said, his voice as shaky as his hands.

She didn’t answer. She can’t. Yet.

But she spoke louder and more clearly than all the articulate people in the Post Office put together.

The Post Master smiled. So did the other customers. One stepped forward to help our new friend put his letter on the counter. Another turned and spoke to Hazel, admiring her pink wheels.

Silence broken. Lines of communication opened.

As we left the Post Office, our electric powered friend was already half way up the road. There was no stopping him. Though I’m sure there are plenty more barriers he will have to face in his life. As do we, but, at least for now, in her five year old world, Hazel has no idea those barriers even exist.

Turned out nice again.


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Voices

So many voices just now.

Voices of reason.

Voices of hate.

Voices of sound arguments.

Voices of the implausible.

Voices that are angry.

Voices that are incredulous.

Voices that are disappointed.

Voices that are elated.

Voices that are fearful.

Voices telling lies.

Voices telling truth.

Voices twisting truth.

Voices that are scared.

Voices that are triumphant.

Voices that are evil, hate filled, stirring up violence.

Voices that are compassionate.

Voices that give hope.

Voices that speak against injustice.

Voices of the classes. The rich, affluent, well off, comfortable voices.

Voicing.

Voices of the poor; the poorest in society.

Needing to find a way to even use their voice at all. Their views are so rarely sought; they fail to meet the requirements for an educated debate. Their opinion does not count. It is uninformed. It is uneducated. It is unworthy.  It must not be allowed to have influence unless it first becomes those things. It’s too risky. Too flawed.

I think I may have heard this sentiment elsewhere and it makes me uncomfortable.

I recognise my past failure to listen to this kind of voice. I have ignored their cries. Ignored their anger. Silenced their voices. I am not a champion for the poor. I do not claim to know what their lives are really like. But I have judged them and, at times, hoped they would not impact my life too much. I don’t like mess.

And some voices are never heard.

They are silent.

Unable to speak.

Deemed unworthy of a voice at all. They don’t reach the standard of the informed or educated.

They are seen as a “risk“. A problem. Too costly. Too flawed.

In the UK around 90% of babies prenatally diagnosed with Down’s syndrome are never given a voice. Their voices are silenced. Even those that are given a voice may then go onto face ignorance and discrimination. Their voices are ignored. Deemed irrelevant.  “Backward” or worse, “retarded”. Never amounting to much.

I cannot ignore their cries. I cannot stand by as their voices are silenced.

My own little “risk” is nearly five years old. She has not yet truly found her voice. And yet she speaks more loudly, more beautifully, more lovingly and more joyfully than any other voice I have heard. She speaks into my life and the lives of those she meets. Costly? Hugely so, but a price worth paying a thousand times and more. She gives back far more than she ever takes.

Prejudice and intolerance come in many forms and I am not immune from their guises.

Voices need to be given to those who have none. However costly. However risky.

And the risk may be overwhelmingly worth it for all.

Listen for the voices we cannot hear. Voices of those who are actually more alike than different.

So I say this firstly to myself for I am guilty of so much that has not helped others: Shout louder than the voices filled with hate. Listen to the voices who are disappointed, fearful and hurting. Whatever their background, wherever they are coming from. Offer hope not judgement.

“Love must be sincere. Hate what is evil; cling to what is good.”