Taking our time, knowing our place.

 

 

“What then is Apollos? And what is Paul? They are servants through whom you believed, as the Lord has assigned to each his role. I planted the seed and Apollos watered it, but God made it grow. So neither he who plants nor he who waters is anything, but only God, who makes things grow.” I Cor. 3:5-7

 

Today I spent a little time watching seeds. Actually, I stared at the soil holding the seeds pointlessly, knowing full well it’s too early for them to emerge yet. And in doing that I suddenly remembered Bible college, and the lessons we had in ‘evangelizing’. We learned how to do it. How to say things. Sometimes how to, kindly and benignly of course, set a trap for them. (That does not actually work. People seldom come to see your point of view if you try to make it by embarrassing them.) How to guide someone towards making a choice for the Lord. ‘Friendship evangelization’ (befriending non-believers in order to convert them) was a popular thing at that time. It was never my favourite part of Bible college.

 

The one thing about Orthodoxy that was attractive is the lack of it, or rather, the lack of ego and the un-hurried approach to almost everything, including evangelization, but in truth, to almost any spiritual process.

 

One of the things that started my journey to Orthodoxy is that my Orthodox chat-friends kept disappearing for Pascha. Of course, they did so at unusual dates, and didn’t say much except ‘It’s Holy Week; I’ll in be church, see you at Pascha!’.  Nothing else, until I started to ask questions.

 

I sowed the seeds, and of course, since it’s my garden, I’ll water them and eventually hope to see some produce. But it takes time. The pumpkin seedlings have emerged – the zucchini hasn’t, and I have serious doubts that the sweet peppers will.

 

Gardening is something you do in stages, with a lot of patient tending and waiting in between. If I dig around in the soil now, looking for the seedlings, I’ll destroy them; they’re not ready yet.

 

When I have children around that I’m babysitting, I like to take them with me to garden. Sometimes they help digging over soil, sometimes sowing. If one of them is around when the berries are ripe, sometimes as many as half of the berries will make it into the bowl.

 

One time, it was around May, and the radishes had been growing well. I said to the boy with me, “We must very carefully check if are grown yet, without harvesting them.”

 

He grabbed one and pulled it out to hold it over his head. “Is it big enough yet?”

 

No, it wasn’t, and now it never would be; he hadn’t quite grasped that ‘harvest’ means ‘pull it out of the soil’.

 

In many ways, I find a quiet, let-time-do-its-thing sort of approach in Orthodoxy a lot. If our job is to sow the seeds, that’s what we do and leave it be. Maybe we’ll be around when the harvest comes, maybe we won’t. If we are the ones in the early stages of the process, then that’s all we do. We don’t go digging around later to see if something has sprouted, or pull out young plants to see if they’re ready for harvest because we are impatient, and want to see results. We learn to be content with the step we are supposed to carry out.

 

It can be hard! If you’ve prepared the soil and sown, you’d like to see the harvest. But in our spiritual lives, and in the spiritual life we share with others, that is not guaranteed, nor is there any room for ego in the harvest.

 

Sometimes I experience an instant moment of change. Sometimes someone else does. Most of the time, though, views, insights, understanding, grows like my little seedlings – taking time to emerge, still fragile, needing care and sunlight to grow into full bloom. If we try to rush it, it will die; we can only encourage.

 

So let’s be patient with one another, and give glory to God in all things.

The Price of Freedom

A little over 40 years ago I was a defective embryo.

 

That may seem an odd way to describe oneself, but the thing is, I am not the one describing myself as such. This is how I am being described, and nothing has brought that home so strongly as the discussion over the past months in our country over excluding people with disabilities from minimum wage.

 

While large groups of people are supportive in our protests that it is unfair, immoral, and, most of all, illegal to discriminate in this way, there were also other sounds. The sounds of people calling for mandatory prenatal screening and subsequent abortion if the embryo proved defective as the solution to people with disabilities entering the jobmarket. The sounds of people – and this actually includes a large part of that group of people supporting the protest – believing that it is the choice of the mother whether or not to allow a child to be born alive or no, but that choice becomes not quite as, well, choicy, if that child has a disability.

 

I’m not calling for a ban on abortion here. First, because I do not believe a total ban does any good; it’ll just go underground. What has been proven to lower the abortion rates are proper education, affordable and reliable contraceptives, and adequate health care and child support measures. Second, because I realize there are situations where a baby has disabilities that are not or barely compatible with life. In those cases, parents are faced with a horrible reality that no one who has not been there could possibly understand. There can be, should not be, any judgement involved there, only support and compassion.

 

Women have been fighting for freedom on various fronts for many, many years, and this includes the freedom to self-govern what happens to our bodies. It is a sad thing that throughout so much of history, women have been treated as if not fully human, and with so little recourse. I am certainly not opposing a growing awareness that ALL humans are persons, and to be treated equally.

 

However, my own situation in life confronts me with the other side of this. The call for freedom has now progressed to a call for freedom without consequences, without accountability. I suppose as a woman I should want freedom to make my own decisions about my body. As someone with disabilities, however, I am all too aware that I am alive simply because I was born too early to legally kill.

 

Freedom is simply the space to make our own decisions. Those decisions though, are never without consequences – that is not what freedom is. Consequences that may not affect us directly, but affect the people around us.

 

I was born with a hearing problem and autism. The hearing problem was discovered in the first few years of my life, the autism (because I am a woman of normal intelligence who deployed numerous coping mechanisms) not until several years ago. In no more than a decade, I estimate, many genetic markers for autism will have been identified and prenatal screening for it becomes a reality. Many defective embryos, like I was 40 years ago, will then die.

 

Of course, had I been killed 40 years ago, I would hardly have realized. I would have died, barely aware of having lived in the first place. This is an argument to many that it wouldn’t have been such a big deal to have killed me then. Indeed, if one is to take the YouTube comments on any documentary on any person with a disability as any sort of indication, any responsible parent *should* have killed me. It would have been selfish of them to do otherwise, and inflict me on society.

 

The other side of the discussion is that I am NOT dead and I HAVE been inflicted on society. The same goes for many, many other people with disabilities. In the zeal to acquire the freedom to choose, the people advocating it seem to forget, somehow, that to say that no mother should have to carry and give birth to an unwanted child, particularly a disabled one, is to say to all of us already here that we should not have existed. At the very least, that no more of us should come to exist. That we have no place here, no value. That we are most definitely unwelcome.

 

No woman should be forced to carry and give birth to an unwanted child, the argument is, just because some distant deity says she should. There is – justified – objection to having to follow an omnipotent God who, even before time began, randomly picks people to save and to condemn. Then the people employing this argument turn around, and lay the task of picking who gets to be saved and who gets condemned long before said person can ever do something to deserve either, in the hands of fallible humans instead. We do not actually object, apparently, to randomly selecting people for either life or death. We are just picky – pun intended – about who is in charge of the selection process.

 

But I digress. What I wanted to point out is that freedom is never ‘I get to do whatever the hell I want without any consequences or responsibility for those consequences’. And the last part, that there ARE consequences and that there IS a responsibility for those consequences, seems to be lost.

 

Well – let me tell you of a consequence. The past months I, and other people with disabilities, have been told repeatedly that we should have been killed before birth. We are being told this because the idea that it is a perfectly valid option to abort a defective embryo has become deeply engrained in our way of thinking. (To some people, the freedom of the mother in this is even completely irrelevant – they want abortion of defective babies to be mandatory. So the lack of attentiveness to consequences and responsibility may very well, in the end, take away that precious freedom as well.)

 

Do you realize that by saying, over and over and over, that a defective embryo should be killed, means that you say to those of us who once WERE defective embryos that we should not be alive?  That we have no place, and that hopefully in a couple decades we will have been completely wiped out?

 

I don’t mean to attack freedom – I simply wish that in the euphoria over that freedom, there would be a little more attention to the consequences of claiming that freedom, and taking responsibility for it.

 

So that maybe, I’ll be more than just a defective embryo that didn’t get aborted in time.

Change the Climate!

From when I was about eight years old, we did a project on climate and pollution every year. Our last year of primary school, when we were 11, usually performed a musical for the whole school. Ours was on the plastic soup in the oceans. (It did also claim that because of pollution, no more male merfolk were born so the merpeople were about to die off. I guess, since I haven’t heard anything about them in recent years, that’s what eventually happened?)

 

I am 40 now, so this all took place long before Greta Thunberg was born. Obviously the climate and pollution has been a concern for a considerable time.

 

As someone who keeps a vegetable garden, I definitely notice the change. Whether the current change in climate is 100% the fault of humans, or 75%, or 50% doesn’t really matter all that much; we definitely need to shape up NOW and do something about it. (Seriously, cleaning up after yourself is a good habit to have.)

 

However. (There’s always a ‘however’).

 

Our prime minister was asked how exactly he’s travelling to the Climate talks in Madrid. His reply was that he is going by plane. Of course, this earned him some (well-deserved) scorn, but, one of our news outlets did the math. Travelling by plane from Amsterdam to Madrid takes two hours and costs under a 100 euros one way (apparently our prime minister doesn’t do budget travel, or he could’ve gotten a return ticket for half that price). Travelling by train is more environmentally friendly, but costs well over 300 euros for a one-way ticket and takes a whopping 15 hours.

 

Now, I’m sure our prime minister could’ve afforded the expense of the train journey, and I guess he could’ve brought a laptop or something so he could keep prime ministering from the train.

 

But it does show a problem; that sustainability comes with a rather hefty price ticket. If plane tickets increase 25% in price to compensate for the extra pollution and to deter people from going by plane, all it’s going to do is stop people on *lower* incomes from travelling. Train journeys – in Holland we have a pretty decent network of trains; at least, as long as you don’t want to go to Madrid – are far more expensive and take more time. Unless the increase in plane ticket fees come with a hefty reduction in costs for more environmentally friendly ways of travel, all it will do is make the rich grumble for the ten seconds it takes them to whip out their credit card, and further reduce the mobility of the poor.

 

This doesn’t just apply to travel; for the ladies (men, if you’re squeamish, don’t read) more sustainable products for periods are becoming more available, but they are also an investment. Three cloth sanitary pads cost $30, particularly if you need a larger size, and three is not enough; unless you want to be washing non-stop to get your two spare pads cleaned and dried before you leak through the third, you’d need about a dozen. That means a $120 investment at least.

 

And investments are the very thing that are nearly impossible for low-income families to do. It might be cheaper in the long run, but you need to hand over a large amount of money NOW. Aside from sanitary products, toothbrushes, toothpaste, shampoo are items many low-income families *already* often struggle to afford; the sustainable products are at least four times the costs of the ‘regular’ brands, let alone the budget ones.

 

The ecological footprint of low-income families isn’t that significant compared to large industries and the top 10% income families. The impact of any measures – which most of the time might even be pretty meaningless compared to the totality of the problem of climate change – will affect the lowest income families the most, creating even more inequality and poverty.

 

The fight for climate change has to go hand in hand with the fight for social justice, or we could well end up with a world that may not have been worth the bother of saving.

Change!

Just a notice:

 

After some years of inactivity, I’ve changed this site, both name and topic.

 

While I’m still happily advocating all around for people with disabilities in general and autists in particular, I found it a bit limiting to just stick to that topic for a blog. And since I don’t have the funds to add domains, I’ve changed this one to a more general blog.

 

 

Another update

Hi all.

It’s been a while. I’ve been working on what is now a ‘manuscript’ instead of just a ‘document’ (doesn’t that sound official?) and still learning to live with autism, instead of merely existing.

The most difficult part, I think, is that I know  acknowledge that things are difficult, where before, I just did them. This is undoubtedly confusing for people – I used to do those things and now I’m complaining I find them difficult.

Truth is, I always found them difficult, and ignoring that cost me my happiness and the chance to lead a productive, fulfilling life. Balancing is still tricky to learn, and of course I sometimes do things that I find hard because it is necessary to do them. But I’m learning to plan time off to unwind, and tricks to not make difficult things any more difficult than absolutely necessary. It’s the downside of being diagnosed so late in life, I guess.

I don’t seem to have it in me to become very spiritual. I think I’m sort of okay with that.

Meanwhile, the manuscript is at the end of the ‘first draft’ phase and being read by a couple of people who will provide comments and suggestions for improvement. (I fear getting back a list of ‘throw it out and start over’ comments).

So…that’s about it!

Also, I attended my first Orthodox funeral last week and was struck by the…practicality, intimacy and down-to-earthness of it all, right next to looking towards the resurrection. Even so, I hope not to attend another one.

 

Progress, not Perfection

Hi again.

As promised, an update on the book. Or booklet, really – it’s not very long. I’m quite happy to be able to say that I’m done with a first rough draft. More stories are definitely still welcome, and I hope some more trickle in for the next couple of drafts, but the basic outline is done!

The process was surprisingly emotional, even though I have not yet figured out what kind of emotion. If I ever write a book again, however, I’ll write a fantasy novel or something like that; that ought to be easier than to write on something that a) I am living through and b) has so much potential for saying something completely wrong.

The title of this blog refers to that  – a friend of mine used this as a nickname long ago and it’s how I learned of this expression. It’s what I’m keeping in mind in writing: that I’m seeking to make progress, and perfection is, has to be, still a long way off. I don’t have to get there. That’s not my responsibility, or at least, not mine alone. Making a tiny bit of progress is good enough.

So – again – I’ll invite adults with autism in the Orthodox Church to share their experiences and stories for this book (all contributions will be anonymous, of course, never fear) and I hope in the end I’ll be able to say I’ve helped make a little bit of progress.

 

 

 

 

A Short Note

A short note to let you all know why I haven’t been posting lately.

Well…the thing is…I’m sort of accidentally writing a book.

Only a tiny one, mind. But I reworked a lot of these blogs, added bits, restructured bits, asked for advice, and, there you have it. Halfway through writing a book.

Actually, it is quite self-serving. I am hoping that by writing a short booklet for orthodox adults with autism, other people will take up where I leave off, and write the dozens of books I wanted to read, but couldn’t, because they don’t exist.

Also, I’m looking for stories, experiences, weird/funny/odd questions you get asked about autism, things you do to make your life in church easier, things you do that have improved your spiritual life (or things that definitely didn’t). If you are willing to share and let me use it in this book, I’ll be very grateful. Leave a comment with your email and I’ll get back to you. Think of it as an opportunity to share, for us with one another, but also with your non-autistic fellow parishioners, on what things are like for you. After all, how will they know if we don’t try and explain?

 

 

 

It’s not a problem, it’s a challenge! *ugh*

That title is just bullshit, don’t you think? (pardon my French). Of course some things are just problems. They’re annoying, they’re painful, they’re standing in the way.  (For a further, excellent, exploration of this, see David Mitchells Soapbox)

Our autism provides us with some strengths, but we’d be crazy to deny it also causes problems.

Still, when it comes down to it, there is a grain of truth in the expression.

We HAVE been given unique opportunities. People around us cause us near constant pain and confusion, to which they are either oblivious or indifferent. Only very rarely will we encounter someone willing to accommodate us.

That means we live in an almost permanent state of being forced to forgive people who are not in the least remorseful. We live in an almost permanent state of not knowing what’s next, forcing us to rely on the only Person who IS constant and reliable.

And because of this, when we do encounter those rare people willing to make an effort, we have all the more reason to be thankful.

So all things considered, maybe we’re not that badly off. We certainly have been provided with loads and loads of practice material on our way to sainthood (whatever route we need to take there).

Also – our own peculiarities provides plenty of practice material for other people, so we contribute quite a lot to their deification process, as well 🙂

Of the above, only the latter comes easily. The other two – forgiving and relying on God – require practice. Especially when our brain difference requires that we take a different and sometimes uncharted road towards that goal.

Let’s explore those uncharted roads. Let’s make roadmaps for future generations, for the children with autism who are growing up. Let’s set aside all those things, excellent and godly though they might be, that do not work for us and make our way to our salvation by finding the ways in which we can.

It’s not just that we owe it to ourselves – a true, if cheesy, sentiment – but we owe it to Christ Who came to save us, came so that we may have life. After all, if there’s *anyone* who has shown Himself willing to make an effort, it’s Him, right?

 

New Year Wishlist

Happy New Year everyone.

I find myself pretty relaxed and with a head almost empty after nine days at the monastery. Since right now, everyone is still asleep after the New Year party, I have time to write down my wishlist for the new year. And this year I’ll have 366 days to work on the items on the list, since it’s a leap year!

  1. I’ll be nicer to neurotypicals and remember that they can’t help it. The poor souls have an overactive secretary in their brain – we must make allowances for that.
  2. I’ll work on improving communication with others. There’s a whole box of tricks that I’ve not yet tried out. Time to do some experimenting.
  3. Now that I’m no longer working with morse code and smoke signals to try and build a relationship with God (see a previous blog) I will invest as much as I can into said relationship, and continue to find new ways to do so.
  4. I will continue to find ways to make services more bearable, and implement them. I will give thanks for the people willing to assist, encourage, and suffer me.
  5. I will continue with this blog, in the hopes that one day I’ll be able to be at least of some assistance to others.
  6. I’ll be nicer to neurotypicals. (Yes, I know I said that in point 1. It bears repeating. They really frustrate and annoy the hell out of me and provide rich opportunities to practice all sorts of virtues. It’s not their fault and I will try to remember that.)
  7. I ran out of points. But I wanted a nice list of seven. So, as point seven: I will try to be less obsessive about such things.

 

That’s it on this New Years Day. I’ll get back to you when I’ve had more than two-and-a-half hours of sleep. Wishing you all a rich and fruitful 2016.