The barriers have been going up lately at an alarming rate. As we move into a new stage of life with my daughter who has Down’s syndrome, so her needs have increased whilst the help she needs is held back.
I’ve wondered at times if the joy I’ve written about here would follow us through the years, or would harsher new realities emerge to crush it? Am I a fraud, claiming Downright Joy when faced with increasing barriers surrounding care needs as well as a few more challenging behaviours? Then there are days of staring into the unknown of what if’s and how will we cope’s of her future? Those are bad days, where joy is elusive.
Authorities are increasingly, or so it seems, putting more and more hurdles in our way to jump over. Not just authorities, but every-day life sets out its barriers at the start of each day. Road blocks all around us, forcing us to divert, often at the last minute. Satellite navigation voices sounding more and more urgent telling us to turn back, we’ve missed our opportunity. Find another route.
Is this what they meant, eleven years ago, by referring to her as a burden?
And yet I don’t recall them mentioning these things back then. In the sonographers room we were quickly told what she probably wouldn’t be able to do. No one told us about the things she wouldn’t be able to have.
Yet, after she was born I quickly learnt that the doing wasn’t all that important after all. We all do things differently anyway because we are all different. But the having is a different matter because we all have needs, even if those needs vary.
So why did they not tell me about the things she wouldn’t be able to have as opposed to the things she wouldn’t be able to do?
Was it because that would shine a very uncomfortable spotlight on us? On society, on Government policies, on community and on our own value systems? A spotlight on lack of resources as well as unwillingness to pay the price of putting others needs before our own. It’s an uncomfortable conversation very few are willing to have.
Sacrifice. Sacrifice is an ugly, painful word to many.
A word often now devoid of its sacredness.
No. Instead they focused on her. On her extra Chromosome. She’s the one with the problem. Not them, not us. And if she were to make it past the 3rd trimester then she would still be the one with the problem. Not them, not us.
They made sure I knew this before I turned down their final solution. But they did not tell me everything.
They did not tell me that there will be so many things she can’t have “because we won’t allow it.”
At birth, she’ll be given a different Red Book to every other baby on the ward. Because she’s different.
They did not tell me this.
As she grows up, the clothes we sell on the High Street won’t fit her, she is the wrong shape. The shoes we sell will not support her mis-shapen feet. But we’ll provide her with a pair that do fit; however we’ll repeatedly let you know just how expensive they are. Please do not ask us for a new pair until these have completely worn out, useless and are falling apart.
They did not tell me this.
Oh and she won’t be able to use the same toilet facilities we do because they will not meet her needs. Please do not ask for ones that do. They are far too much money. You’ll have to lie her on a filthy floor instead. Better still, don’t go anywhere, stay at home instead.
They did not tell me this.
Her school will be different. Good but different. She will be hidden away there from her community but still cared for and loved there by those who know her worth.
I already knew this and it gave me hope. There are good people in our communities and especially in our schools. We need them so much.
She can join in the very limited activities that we will pay other good people to provide, but you will have to attend countless meetings, fill out numerous forms and open your life to intense personal and painful scrutiny in order to access the funding we have set aside (under lock and key) for people like her.
They did not tell me this either.
There will be so many more experiences she cannot have, but not because she cannot do. And when, eventually, she leaves school, the opportunities for her to be part of her local community in a meaningful way will probably dry up to virtually nothing.
They did not tell me this. But others who are further along this road than me are already signalling what (doesn’t) lie ahead.
Doing things differently should never be a barrier to being part of a community. Love can always find a way, but love has to be an action not just a feeling. Love is a commitment. Love is hard work. Love is sacrificial.
The cost of living crisis began a very long time ago, but many did not notice.
What is spoken over the unborn with Down’s syndrome is a discourse agreed long before their parent(s) set foot in the clinic. An unspoken discourse….
All things considered, we’d rather you didn’t come in. Don’t take it personally though. No, no, see it as a kindness! To you, to your parents and to the rest of society. The intelligent, sensible thing to do. We really can’t afford to be quite THAT welcoming. Look, we’ve even developed this great new test which will help matters enormously. Routinely even; It’s no big deal, really. It’s for the best.
Diversity? Yes of course we like diversity. But only the diversity we like.
Obviously, we will leave the decision up to your parents. That’s the accepted thing to do. We won’t tell them what you can’t have in your life, just what we think you can’t do in your life. Make it a matter of personal choice, thus absolving us of our collective responsibility.
They can be the ones to take the blame; your parents. Not us.
Either way you lose.
When the cost of living is deemed of higher value than the cost of loving we all lose. To diminish one of us is to diminish us all. I now see exactly where the burden comes from, and it isn’t from my daughter who has Down’s syndrome.
I am glad that they didn’t tell me these things; even if they knew of them. Telling me what she would not do was enough of a barrier to overcome. A prediction based on a value system I do not share.
It seems to me that we’ve got this idea of scrutiny entirely the wrong way round.
We are scrutinising the wrong thing. Instead, the camera, the tests, should be focused on the scrutinisers, on our society, on us. Searching our genetic make-up, and finding out how and what went wrong? When did we allow these anomalies to creep in? When did we become a society that is so focused on perfection, on achievement and success, so focused on ourselves? When did we forget that in order to truly live, we need first to love.
Downright Joy is found in the daily sacrifice.
It’s in the harshest of environments. It is breathtakingly humbling, eye-wateringly costly, yet remains the greatest privilege and honour of my life to receive.
They won’t tell you that, but I will.