on dyslexia and superpowers

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I think a lot about disability. This is not just because I have an 18-year-old with Down syndrome. It is also because I have a profoundly, excruciatingly dyslexic 13-year-old and a 9-year-old whose dyslexia is less devastating.

Knowing about my struggles with dyslexic kids, a neighbour (author and educator Adam Bushnell) kindly lent me Philip Schultz’s memoir, My Dyslexia. I can see why he commented that, for Schultz, dyslexia was ‘like his superpower.’ Having overcome his dyslexia to become a Pulitzer Prize-winning poet, Schultz credits his success to the blocks to reading and writing that seemed insurmountable in his early childhood. Not in spite of his dyslexia did he achieve what he has achieved, but because of his dyslexia.

Maybe so. I don’t doubt that the struggle shaped him. But not all dyslexics are as fond of books and words as he was (and never mind the slipperiness of the definition and diagnosis of dyslexia). And–more importantly–not everyone with dyslexia has his grit. He owes much to his persistent, even indomitable, self-belief: ‘even when the entire world seemed to be ganging up on me, some persisting sense of myself argued on my behalf’. Ditto for the young scientist Schultz admired, who called her dyslexia ‘her secret weapon’. I’d say the credit goes to her consistent, pig-headed determination and sheer force of will. Dyslexia provided her with a mountain, true. Hope and courage enabled her to climb it.

The challenge that people with dyslexia face is the same, at bottom, as the challenge we all face: to ‘learn to love what is weakest and most confounding about ourselves, because and despite and in deference to what is essential about us’ (all quotations p. 117). The great challenge of his life, and mine, and my children’s, and yours, is very simple. It’s all about not giving up.

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This is true whether it’s dyslexia or depression or Down syndrome (or just daily life during a pandemic) that challenges us. I almost wrote ‘afflicts’ there; I hesitated because it’s an unpopular way of thinking about disability. So negative. But affliction is exactly what Schultz describes; it’s what my son experiences; it is, if I am honest, the way I experience depression. And it is the affliction that stirs, in some of us, the gritty response that makes for success. The super power of the oyster is not the irritation provided by the grain of sand but the ability it has to smooth over that irritant until it forms a pearl.

In a sense, then, we are the most ‘disabled’ by the conditions that afflict us when we lack either the ability to recognise the grain of sand or the mountain for what it is, or we lack the hope and courage to surmount it. Most days, I would say that Anna, my 18-year-old with Down syndrome, isn’t especially ‘disabled’ by her genetic idiosyncrasy. Having thought through Schultz’s book, though, I see that’s not exactly what I mean. In terms of sheer not-being-able-to-do-stuff, Anna is always going to ‘win’ the competition for the most disabled. Yet she is not usually afflicted by her condition, and I am beginning to see why: she doesn’t see the summit. We clamber around on the slopes together, but there’s no determined ascent.

Maybe that’s why I’m still a little uncomfortable with these thoughts about mountains and overcoming. Why do some people make it to the top while others are defeated by the summit? I don’t know. I may not know much more about disability than I did before reading Schultz’s book. But I have seen in a new and crystal clear way that my kids who need to see the summit and learn to climb need grit more than any other intervention. And that is more helpful than I can say. Thanks for the loan, Adam.

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The Most Holy Trinity

At least during the pandemic, we don’t have the weekly argument about going to Mass, or the complaints that it’s boring. That doesn’t exactly comprise a silver lining, though: when we (the parents) tune in to Mass at Blackfriars (Oxford), the kids get on with other things. The 16-year-old is asleep, the 13-year-old is watching YouTube, the 9-year-old is skating around the house on her roller blades, and my eldest is listening to music and humming along. This is better than the nerf war that was going on during the Liturgy of the Word. (It may also be noted that one of the adults is asleep on the sofa during the Eucharistic Prayer and the other is writing this blog.)

Keeping the feasts and fasts while physically separated from the Church is tough. We fail a lot. And regular prayer is hard, too. I thought that one of the redeeming things about the pandemic would be the possibility of praying Compline ‘with’ the community in Kent I so enjoy visiting. But it is often impossible to follow along–we can’t understand the sung words, and the video lags. I don’t mind. The rest of the family does, and so we haven’t been joining in. Universalis has continued to be a lifeline for me. I stay connected by knowing what day it is–today is the feast of the Most Holy Trinity; were it not a Sunday, we would remember St Robert of Newminster today. When the kids are out of school, holidays are cancelled, work is squished in around lessons, and the usual schedule of activities and appointments is suspended, it is easy to get lost–hardly remembering what day of the week it is, much less the month and date. Tomorrow there will be no school run, and we won’t go to work. It will still be Monday, though: Monday of week 10 in ordinary time (or St William of York, if you observe his memorial). Liturgical time goes on, pandemic or no pandemic, lockdown or no lockdown. I am grateful for that.

And I am grateful, more grateful than ever, for communities like the Dominican friars we join for Sunday Mass and the Benedictine nuns I like to visit at Minster Abbey. A few years ago, I wrote about the nuns, reflecting that my misunderstanding of Sr Johanna revealed an important truth about the relationship of the wider Church with such communities. ‘I’ve got your back,’ I thought she said. That wasn’t what she said, but it was true. While I am here, with my family, loosely following the Sunday Mass, it is happening, just as it always has, at Blackfriars and everywhere that religious communities gather for the celebration of the Eucharist.

I would rather be there, of course. And I would rather wrestle the kids out the door of the house and into the door of St Bede’s than listen to them running up and down while I try to follow the homily. But in these strange times, it is good to know that we are the Body of Christ: we are incorporated at baptism and we members are nourished by our participation in the Eucharist. And yet, we remain joined to the Body even at this distance. The regular communion of the nuns, the monks, and the friars benefits us; we participate in a mystical way. So the act of spiritual communion that we make (thanks to the prayer given us by the friars) is real. It’s just not physical.

I think what I have been doing for the last hour, since the beginning of the Eucharistic prayer, is considering why I keep on sitting here, while Mass is going on somewhere else. While my participation in the liturgy is rather two-dimensional, involving two senses rather than the usual 5, it helps me to make the spiritual act of communion. And so I will tune in again next week.

May days

Keeping up with writing is harder than I expected. Fortunately, spring is unfolding whether I write about it or not!

Of course, it hasn’t all been sunshine and flowers. For the last few days, winter has stretched out a long, cold arm! I’ve had to cover my seedlings and put an extra layer on myself. The up side is that we have a great excuse to light the wood-burning stove.

These are strange times. Yet the birds and the sheep don’t notice, and the trees are almost all sporting their summer foliage. Some things are unaffected by the virus, and I am very glad to be in a position to notice them!

Deo gratias

Strange times

I keep writing that: ‘Strange times we are living in’, I say. What I mean, I think, is ‘deeply unsettling times’. On the one hand, I rejoice at the recovery of the planet. I hope some crude oil remains in the ground, since we don’t need nearly as much of it at the moment. I am glad to read the news about clear air in India. And I am having a love-hate relationship with home-schooling. Since my 13-year-old hates school to the point of anxiety and borderline depression, I am happy that he doesn’t have to go. But trying to get the kids to do schoolwork is difficult, and trying to plan educational activities for them—things that they might enjoy doing that also count as learning—is even more difficult. There’s a reason I teach at a university and not at a primary or secondary school.

And it’s stressful. Teaching on zoom is weird. Maybe I will get better at it, but so far, I have found it completely devastating. It will take a while for me to get over the feeling that I am inarticulate and stupid. Perhaps I have always been inarticulate and stupid, and zoom teaching is only bringing the real me to the surface. That’s my worry, of course: I am the person who heard about impostor syndrome and thought, ‘Well, yeah, I understand that that’s a thing. But everyone really does know more than I do. Maybe even the students…’ I am the one person who really is an impostor, apparently. Shifting teaching platforms and expecting to lose my job (a half-time contract renewed every year) pushes all my ‘I am not worthy’ buttons.

And yet, I am not on the front-line. God help those doctors and nurses and all the people who keep the hospitals and doctors’ offices running during these ‘strange’ times. I cannot begin to imagine life as someone facing COVID-19 at work on a daily basis. I couldn’t come home: the risk to my daughter is too great. My husband and I are fortunate— working from home was already a reality for us a lot of the time, and working through the crisis is like trying to write a conference paper for early September during the summer holidays. Difficult, but not impossible, however impossible it feels mid-August. The stress of caring for the sick and the dying and of the possibility of infection, illness and death is beyond anything I am likely to experience, however long this craziness lasts. Thank God the people who are keeping the medical establishment running are keeping on.

Except they’re not, are they? I didn’t read the article about the ER doctor in New York who committed suicide. Why would I? It would be voyeurism. Eternal rest grant unto her, O Lord, and let perpetual light shine upon her, I say. She needs my prayers more than my curiosity about the circumstances of her death. How? I wondered when I first saw the headline, how did she commit suicide? A doctor would know the best way. I didn’t read on, because to do so would have been wrong. Not for everyone, but wrong for me. I’m so sorry for her, because I have a sense of what the approach to suicide is like, and it is awful beyond words. I’m sorry for her family, who will have lost a loved one to COVID-19 in a twisted and bewildering way.

Let’s face it: nobody is ok. Parents are not ok. Health care professionals are not ok. People who are out of work because of the crisis are not ok. Teenagers are not ok. My 16-year-old is really not ok. He should be preparing for exams he’s likely to have to take (though they’ve been cancelled) in September, but he can’t focus. He should be reading ahead for his new course of study (A-levels) that will begin in September. ‘It’s school without friends,’ he says. School was made bearable for him by having his friends around. My younger teenage son is not ok, either. He hates school, and got through at secondary by staying under the radar, doing the minimum required and not getting into trouble. At home, the threat of coming under uncomfortable school scrutiny disappears, and there’s no motivation to do anything academic. I discover, to my deep dismay, that the child who loved learning his whole life has forgotten what it is to enjoy learning. He can’t translate his curiosity into a desire to learn. I am sad for him, so sad. Families are not ok—not the kids, not the parents.

But it isn’t all bad, as hard as it is to live in the mess and the chaos and insubordination. The boys have moved from the bickering and fighting that characterises the first few days of any family vacation into the hanging out and doing things together that comes after that initial period of friction. Walks with the kids are more frequent; reading together is becoming more frequent; and watching Star Trek (TNG) with the girls each evening is a treat. And having compline streamed online from the monastery that is my soul’s home away from home is beyond a treat. It’s a lifeline, and being able to share it with the family in the living room is sublime, despite the kids’ grumbling and the livestream lagging.

These are strange times, to be sure. And we are definitely not ok. But I suppose if there is one thing that being a person dogged by a dark depression-cloud has taught me, it is that being not-ok is not the whole story. It’s not the whole reality right now, and it is not a permanent state of affairs. It sucks for now. So I am letting the kids have afternoon screen time, and opening the wine early.

When we don’t have compline with the nuns, this is one of my favourites. Pray it with me if you are so inclined.

Keep watch, dear Lord, with those who work, or watch, or weep this night, and give your angels charge over those who sleep. Tend the sick, Lord Christ; give rest to the weary, bless the dying, soothe the suffering, pity the afflicted, shield the joyous, and all for your love’s sake.  

 

Third Sunday of Easter

The weekend after Easter—Easter Saturday and the Second Sunday of Easter—didn’t seem like a weekend at all. Time is like that these days. Even having virtual Mass on a Sunday and keeping to the school week doesn’t erase the sense of being in some kind of liminal time. It is almost like the strange stretch of the summer holidays when we are home and our friends are away, still on holiday somewhere. Almost. But not quite, because when you do see people out and about, you have to stand six feet away from them to have a chat, and the topics of conversation are far from the usual.

The signs of spring continue unabated. The farm smells as farm-like as ever, pungent, with mixed aromas of cow and sheep and heaps of dung for fertilizer—or so I imagine. What else could those smelly heaps be for? Some of the sheep have been shorn, and in the field along the path lambs skip (really) as the adults graze, untouched by the energy of the new generation. Their skipping time has gone.

Sometimes I feel like that: my skipping time has gone. These have not been easy days for me, though I can’t blame the dreaded virus. It’s just me, as I have always been, with ups and downs. Lately the downs have dipped into deep darkness and despair. It has occurred to me that this may be normal for me, but it is not normal. So maybe my normal can change. This is a radical thought, mind you.

But not, I think, an impossibility. And that is somewhere to start.

Deo gratias.

Holy Saturday

The big news from the nature reserve this week is that the tadpoles have hatched. Last week we had frogspawn; this week we have tadpoles! They’re difficult to see, since they’re about the same colour as the bottom of the pond. Midday was the best time of day to see them. At the ends of the day I mostly saw the reflection of trees round about the pond. And it was impossible to take their photo! Anna and I also saw some peacock butterflies, which also moved too fast to be captured in a photo. But there were some things that stood still.

My own vegetable patch (top left) has been planted: potatoes, onions, leeks, and beets. Carrots, radishes, and salad greens are in big pots, and the tomatoes are in small, plantable pots. We’ll see. I’ve never had much luck with tomatoes on this side of the Atlantic. The sheep are self-explanatory, and I’m not sure what is flowering in the top right corner. Ditto for the weed with the lovely flowers in the next row.

I think the budding tree might be a sycamore, the one without any leaves is an alder (another late leafer), and the last is a willow, of course. The bird is a bullfinch, unless I am mistaken.

Apart from the forget-me-nots, the flowers are all in my front garden. I planted some bulbs in December, and I’m very glad I did. It has been great to watch them grow, and satisfying, since I am not good at growing anything I can’t eat.

The odd one out is the pizza. But it is a family favourite, all made from scratch and cooked at ridiculously high temperatures on Lewis’s Big Green Egg. Pizza night was Maundy Thursday. We joined the Dominicans at Blackfriars in Oxford for the Mass, and we will tune in again tonight for the Vigil.

 

This week I have watched the death toll rise and feared for all the vulnerable. There are no words.

Keep watch, dear Lord, with those who work, or watch, or weep this night. Tend the sick, Lord Christ; give rest to the weary, bless the dying, soothe the suffering, pity the afflicted, shield the joyous, and all for your love’s sake. 

The cruelest month?

April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring 
Dull roots with spring rain.

I’m not sure whether April really is the cruelest month, but this year it might be. By all accounts, the pandemic is bound to get worse before it gets better. It hasn’t been a happy week, but at least my family are all well, so I must summon some gratitude and get on with it.

The natural world carries on without regard to the number of new COVID-19 cases (on the rise) or the stock market (not on the rise). Birds still flit to and fro carrying nest-making materials, singing their usual songs, and occasionally staying still long enough for me to identify them.

Early springtime is erratic. One day, we have sunshine and almost-warm weather; the next, it’s blowing a gale and threatening snow. The signs of spring are also inconsistent. The oaks still think it’s winter, while the gorse blooms bright yellow.

And in a strange twist of fate (par for the course this week), wordpress won’t let me upload any new photos. Cruel. 

 

Signs of spring

A small but significant thing I miss: chatting with the folks who work at the local co-op. Strange as it seems, those brief interactions with relative strangers—talking about the weather, mostly—were an important part of my day-to-day life.

Yes, folks. I am an extrovert. Guilty as charged. A friend on facebook suggested that the time for misanthropic introverts has come. Great, I’ll just bring out my inner misanthropic introvert then. Oh, wait, I haven’t got one of those!

So I am here, chatting to the blogosphere—all you relative strangers—about the weather. That’s right: I plan on posting a ‘small talk’ blog once a week, to prevent myself going mad from the lack of human interaction. I propose to share with you some of the signs of spring that I have seen on my daily walks. (Also essential for my sanity; I do maintain the requisite distance from any walkers I see.) In part, I want to pay attention to spring for deeper, more theological and spiritual reasons. But mostly, I just want to talk about the weather.

This week in the local nature reserve:

I am no expert, so feel free to correct me (or fill in the blanks) here. From top left: blossoms on the hawthorn tree, daffodils, frogspawn. (I have been checking almost every day to see whether the tadpoles have emerged.) Bottom row, from left: a pheasant, willow blossoms on the path, candelabra primroses and narcissus.

If I were more technologically astute, I’d include some bird song. Here again, I am definitely no expert. Our woods are full of birds. I’ve seen blue tits and long-tailed tits, great tits and a bullfinch, all the usual suspects (magpies, blackbirds, pigeons of all sorts, crows, and robins), plus a jay and a load of others I’ve yet to identify.

Most of the week was spring-like: sunny and almost warm (I’m from Southern California, so what passes for ‘warm’ here doesn’t impress me). Today, though, I wore my big coat, and I needed it when the wind got up and closed the gaps in the clouds overhead, and the rain began. (Best not to think about the laundry I left on the line—ever the optimist!) I wasn’t sorry I’d ventured out, but I was glad to have the appropriate attire! Now, as I write, the sun has emerged again and I see blue sky between the clouds.

Spring is coming, and it seems completely unaware of the predicament we humans are in. The flowers are blooming and so are the trees, the lambs have been born and the birds are nesting. And for all these signs of spring, I am grateful.

a thing about theology and disability

I frequently tell my students that sometimes writing clearly requires stating what seems blindingly obvious. Don’t worry, this is not a post about good writing. (If you want to read some, my current example is Bill McKibben’s Falter. I wish my prose was in the same league as his.) This is a post about something that is blindingly obvious to me, and how it came to be that way. That is, most of the things that seem to us to go without saying don’t just appear that way. They’re things we’ve learned. In my case, I have learned them the hard way (which often sucks, but the lessons stick).

This is a story about how I came to think about disability and God in the way that I do now. Once upon a time, I was teenage girl who intended to have kids and be done with it by the time I was 30. Why? (Wait for it…) Because I was so certain that I could never, ever cope with having a child with Down Syndrome. (File under ‘Please God, don’t send me to China’.) Well, I was sort of right: I am not good at coping, and sometimes I fail spectacularly. I was wrong, though, to think that my life would be better without a child with Down Syndrome in it.

About 18 years ago, I was a PhD student writing about Christian identity. As I thought about what it meant for someone to be a Christian, I found myself thinking about things like ‘imagination’ and ‘belief’. If Christians are shaped by doctrine and Scripture, then how can a person who doesn’t understand either be called a Christian? I’ve written a good bit about that elsewhere—not only in my dissertation, which became a book, but in articles I’ve written since then. Christian discipleship is fostered by study of Scripture and doctrine, but not because knowing stuff gets us closer to Jesus. The object of the discipleship game is to follow, and being smarter doesn’t make us better followers. ‘Taking every thought captive to Christ’ is the imagination’s job with respect to Christian discipleship; the more, and the more elaborate and fancy the thoughts, the more help (from doctrine and Scripture) we need to capture them.

There is an implication of my proposal that I don’t spell out, though. I don’t say it in anything I have published, and yet I keep saying it—to students, to friends at conferences, in emails—as if it ought to be obvious. It is that disability names a feature of most human lives at one point or another, but it does not name something that impairs a person’s discipleship. That is, ‘disability’, as we human beings think about it, doesn’t block a person’s relationship with God. As my friend John Swinton has pointed out, we are known by God. So we should not make the mistake of believing that human being’s relationship with God depends on the person’s ability to know God. Scripture and doctrine agree that we can’t. But we are known by God, and can come to know God in that being known. Disability doesn’t get in the way of God knowing us. (Now there is a lot more to be said about that, in a lot more technical detail. But I hope that we can agree that, for example, I don’t need to be able to speak to be able to pray. I’ll leave it there, and be glad to answer questions.)

The point is that, from God’s point of view, we are all ‘disabled’—we don’t know how to pray as we ought to; we cannot see God; we don’t have the capacity to know God. If we want to pray well, we ask for help; if we want to see God, we ask for God to reveal God to us. And we wait. The only thing that really counts as disability here, the only thing that impairs our relationship with God is sin: we turn away; we refuse to ask; we refuse to wait. That, and not any impairment of mind or body, corrupts our relationship with God. No hearing loss, no paralysis, no cognitive impairment, no mental illness, nothing that disrupts our earth-bound and social existence can separate us from the love of God.

A long time ago, I was the mother of a tiny child, a little girl with Down Syndrome, whose potential for Christian discipleship I came to see as fully equal to my own. And she cannot explain the Trinity to me, but she can draw me into prayer. She remembers in her prayers those for whom I have forgotten to pray. She knows how to say sorry (though she doesn’t like to say it any more than anyone else does) to others and to God.

I am grateful for having been ‘sent to China’: from within this landscape I see things differently. I see what really impairs us human creatures—it’s not the limits of our intelligence or our skill set; it’s the limits to our humility, patience, and love. And I am unspeakably glad that I have daily before me a model of humility and an encouragement to my patience, and that in this crazy life we have together, there is Love—more than I ever knew there was in the whole world.

Deo gratias.

I suck at everything

I suck at everything. No one will miss me.

Or so I think, more often than is good for me. And when I think it, I am sure beyond all doubt that it is true and real and final.

I take a walk, long after dark, almost always in my slippers, and care not what might go wrong with this stupid trek. Except sometimes I hope the neighbours don’t spot me and decide I am crazy. Eventually I decide not to go into the woods, because I have begun to think that maybe someone will notice that I am gone. Then who knows who might come looking for me and what unwelcome chain of events might be set in train. However much I suck at everything, and however sure I am that no one will miss me, I am not (that) crazy. (Still, I’ll step into the road and glare at the car approaching, as if to say, ‘You’re going too fast. If you don’t slow down, you’ll hit me and it will suck for you. I really don’t care.’ The car slows and I move on like a cocky 5-year-old who has chased away some seagulls.) Dejectedly, I turn for home. Like Lucy Pevensie, I find I’ve not been gone long enough. I guess time in my own private anti-Narnia passes at a different rate from ordinary clock-time, too.

The thing is, there is a dark narrative that flows deep beneath the surface of my ordinary, everyday life. In this story, I am no good. Against every possible measure to which my paltry achievements might be set, I am a failure. I’ll spare you the litany, for it is depressing for me and would be boring and ridiculous to anyone else. This storyline runs alongside a stream of peace and sense of place in the universe, one that is entirely disconnected from the notion of my usefulness. So mostly I walk in the narrow space between these two opposing accounts of who I am and what my life is about. Sometimes I wade happily in the latter stream, feeling, well, invincible.

And then something nudges me, and I stumble. I fall into the waters of the dark and dangerous stream, somehow at once turbulent and deep. I am pulled down, as if by a heavy stone, by the sense that I suck at everything, and nobody will miss me. Fortunately, I am too stubborn a swimmer and too petrified of drowning to go under. After thrashing around for a while in the murky water, I crash back onto my slim patch of ground soaking, feeling like the Hulk in the film—the one in which he has that countdown since his last ‘hulking’. I’ve probably smashed some things, emotionally and psychologically speaking, as I tumbled through the current. I’ll spend the next few days muttering apologies shamefacedly.

This is my life as I know it. As I have always known it. Ever since I can remember. Sometimes it doesn’t suck. And the greatest gift I have is being able to forget how awful thrashing around in the churning and murky water was, for stretches long and short in between my plunges. I am grateful for that. I’d like to be able to remember just a little bit better, when I am clutching at fast-moving branches, that it isn’t always like that, it’s not always dark and terrifying and desperate. For the time being, I’ll take my persistent and stubborn refusal to drown as good enough. After all, it’s worked so far.

And for that, in the grey light of morning, I say: Deo gratias.