Imago Dei and Disability

Egyptian Princess, 2010

Amber Nething

Ink on Paper

via Arts and Services Artist Portfolios

I'm currently reading a book called 'Adam: God's Beloved' by Henri Nouwen.  Nouwen has long been a favorite of mine; his book 'Life of the Beloved' has been instrumental in my growing to understand what it means to live as one whom God truly loves. A man who spoke frankly about deep issues of the heart, Nouwen was marked by significant loneliness and depression.  His experiences taught him that suffering should be held in close, intimate regard by believers.  It is as predictable as the sun in Summer that I should gravitate toward such things, but I do, so there you have it.

Nouwen spent the last years of his life living and ministering at L'Arche Daybreak, a residential community where people with and without disabilities live and work together.  In his time there, Nouwen worked with and assisted a young man named Adam, who had profound disabilities.  He would help Adam bathe, shave, dress, eat, walk, go to the restroom, and so on.  In this incredible little book, Nouwen documents his relationship with Adam and describes his own journey from hesitancy to acceptance, from perceiving difference to acknowledging similarity. I have not even finished this book and it is already tiptoeing its way into my Desert Island five.

Understandably, reading this book has caused me to reflect on my own work.  I spend my days at an arts based day program for adults with intellectual and developmental disabilities.  I am a music therapist, one of those privileged few who is actually using their degree for its intended purpose.  The people with whom I work are all 'profoundly disabled,' meaning that most of them function at a clinically diagnosed cognitive age of less than about 10.  Most of them have few self-care skills, are non-verbal, and need assistance in the most routine of tasks.  My days with them are filled with small actions seeking small victories: shaking a tambourine, lifting up an arm, making eye contact. Externally, we are engaged in the pursuit of the most basic, most mundane things. But the reality is much deeper.  The reality is that in this work, where we are free of the trappings of lofty cognition, or false selves, we are met with a clear and pure picture of Imago Dei: the Maker's mark.  Nothing separates them from me or me from them. We are made, each of us in equal measure, in His image. We work together to hit a drum: Imago Dei. We lift a spoonful of food together: Imago Dei. We walk together, wheelchair and feet: Imago Dei. It is pedestrian and profound.

When I take the time to look beyond what is so wrongly perceived as  deficiency in those with whom I work, I see holiness in our time together. And as is the case when in the presence of something holy, I find that I am changed, I am transformed.  In assisting them in their need, my need is revealed to me.  

How apropos then, that Nouwen notes in this book that 'true care is mutual care.'

Although I am a theologian's daughter, I  am no exegete.  I have no idea what the original language is in Matthew 5. I'm not intimately acquainted with the context. But when I read Jesus' words: 

“Blessed are the poor in spirit, for theirs is the kingdom of heaven," (Matthew 5:3), I cannot help but think of those sisters and brothers of mine with whom I am privileged to pass my days at ASD. The kingdom is surely theirs, and I am blessed by the glimpses into it I am daily allowed. 

Rest Your Head, You Shall Find a Manger Bed

A few days ago at work, a client and I were brainstorming 'buzz words' for our upcoming Christmas show. We began sharing our favorite things about Christmas time--hot cocoa, carols, yule logs, general merriment.


Then he says: 'It's a holy time. it's a holy thing, a holy name. It's the birth of Christ, which stands for freedom. Freedom...heaven, which is for resting. Heaven is holy.'

Happy Advent, friends.
May it truly be a time of freedom.

gustate et videte? gustate et videte.

-I was reading this book on my mom's kindle about being the 'marrying type.'  My motivation in reading it was, admittedly, flawed: read it, so I could consequently be angry that such a book exists and justifiably think things like: 'Who is this person to tell me these things?! There's nothing wrong with me! Just because i'm 26 and completely single doesn't mean i'm not the 'marrying type!'

Anyhow, in the middle of doling out terrible (read: 'actually pretty good') advice like: 'protect your heart,' and 'keep Jesus first in your life,' and 'God's got a plan,' and 'singlehood is useful' (There's another novel of a blog just waiting to be written), the author said something that has since stuck. In speaking about finding a mate, she mentioned that marriage relationships are most successful when those in them are part of the same 'spiritual weight class.' I begrudgingly agreed wholeheartedly. Then I sighed and got a little sad.

-I celebrated my 2-year anniversary with Arts and Services for Disabled yesterday. It's been a quick, full, heart-healing two years. I've learned things I never knew were there to learn, made many wonderful friends, and rediscovered the magic and absolute necessity of creativity in my time at ASD. And, on the coattails of the burgeoning nostalgia, my boss' boss called to ask me to present our little silent film project at the Western Region Association of Music Therapy Conference at the Queen Mary in March. My palms are already sweaty.

-Speaking of the silent movie, check this out: 'Love is in the Air'

-I'm reading 'The Cloud of Unknowing.'  I'm also reading 'Tarantula' by Bob Dylan. One is much better than the other. Hazard a guess.

The Gladdening Light

Usually at dusk, at sunset--my favorite time, when my soul's nerve endings all seem to be lit up--during my silence, I am led to a room. a plain, wooden-paneled room. dark, but not without lightness. Warm. Regal. Plain. I come through a door to find the beloved three sitting at a plain, sturdy table. Jesus, with a full, rich, dark beard and smiling, knowing, slightly sad eyes. It's on him my eyes are fixed, but the other two are there. The Father is all light and power and brightness and bigness. Sometimes He laughs--a great, booming, thunderous thing at which I myself never know whether to laugh or to cry. He seems relaxed there. almost jolly. And the Spirit, who has ushered me in and goes with me when I leave, seems to be nothing more than a shimmer. or a disturbance of light, like the bending of heat waves on a desert oasis or those bright stars you see when you close your eyes and rub them. Mysterious, beautiful, and surprisingly constant.

These Beloved are enjoying a meal off wooden plates and cups.  They always invite me to join them. And I do. And we sit. We commune. I hear them smile and laugh at the goings-on that delight them, And I feel just a bit of their immense joy. I hear them sigh and speak together in concerned tones about what saddens them, and I feel a bit of their sadness. But in the end, they always turn their smiles, their light, and their beauty upon me, kiss my cheek, make the sign of the cross on my forehead, and tell me to go out, remembering who they've made me to be, mindful of my salvation, and sure of their love for me. And I turn toward the door, which is almost bursting from the banging, and knocking, and pushing of all that waits beyond this peace, trying to distract me, trying to turn my attention away from these beloved Three. but they don't send me alone. They will see me tomorrow, but until then, that shimmer of knowledge, that wind of conviction and assurance will walk before, beside, and behind me. Leading my steps and holding my hand, for I shall not walk alone.

Amen and Amen.

I'm reading Hildegard of Bingen.  It's what i imagine a really intense LSD trip is like...only holy, and true. and crazy.

'Paul says in 1 Corinthians that God has chosen the weak, the foolish, and the crazy to shame the clever and the powerful; he has chosen the most despised, the people right at the bottom of society. through this teaching we see a vision unfold in which a pyramid of hierarchy is changed into a body, beginning at the bottom. One might ask if that means Jesus loves the weak more than the strong. No; that is not it. the mystery of people with disabilities is that they long for authentic and loving relationships more than power. They are not obsessed with being well-situated in a group that offers acclaim and promotion. They are crying for what matters most: love. and God hears their cry because in some way they respond to the cry of God, which is to give love. '--from 'Living gently in a violent world: The prophetic witness of weakness' by Jean Vanier, founder of L'Arche

God
and I have become
like two giant fat people living
in a tiny
boat.

We
keep bumping into
each other
and laughing

-hafiz

Much-Afraid and Me

Somehow, somewhere along the way, I became afraid.
Much-Afraid.
I'd like to be unafraid now.

--MBE, July 2008

When I was young, my family had an illustrated copy of 'Hinds' Feet on High Places.' I loved to sit in my room, looking it over again and again...I remember the depiction of Jesus so clearly because to me, he looked like my father--full dark beard, and hairy legs.

The main character, Much-Afraid, is a crippled girl with a crooked mouth. She lives her life unfulfilled and desiring much more. She meets the 'Shepherd,' who tells her he will take her out of her home in the 'Valley of Humiliation,' to a new home in the 'High Places.' He tells her he will give her a new name and heal her sadness, and she joyfully accepts his offer. 7-year old me is thinking: 'This is great! It's happening for Much-Afraid just like it happened for me. Meet Jesus. Learn about Heaven. Accept the offer. Life is great. Go to Heaven.'

But when the Shepherd introduces Much-Afraid to her travelling companions--'Sorrow' and 'Suffering,' 7-year old me feels confused. Why would Jesus deliberately put her in the company of pain? Of sadness? How is that love? And even worse, the Shepherd leaves Much-Afraid to travel alone with Sorrow and Suffering. Is he abandoning her?

We can feel pain coming on. We know when it's approaching, and we avoid it. Systematically, instinctively. How backward of the Shepherd to ask her to travel alongside it...letting it match her step for step.

Much-Afraid travels with Sorrow and Suffering, and though they stay close and offer to hold her hand as she journeys through the craggy mountains, Much-Afraid doesn't accept their help. In the end, it takes some interference from some nasty relatives to push Much-Afraid into the helpful embrace of Suffering and Sorrow.

As I grew, I sometimes found myself thinking about Much-Afraid's travel buddies. In the moments when I found myself experiencing the kind of pain that took my breath away, or cradling the sort of heartbreak I thought people were always exaggerating, I remembered Much-Afraid's story, and her unlikely companions. Who better to walk with? Who better to learn from? In some reckless part of my heart, I cherish their company. When I find myself reaching out to embrace my own Sorrow, and my own Suffering, I feel myself moving forward. Taking steps toward my own high places, where I arrive unafraid.

The Wait

"Then he took his hands and placed them on my shoulders, peered straight into my eyes and said, 'I hope you'll hear what I'm about to tell you. I hope you'll hear it all the way down to your toes. When you're waiting, you're not doing nothing. You're doing the most important something there is. You're allowing your soul to grow up. If you can't be still and wait, you can't become what God created you to be." --Sue Monk Kidd

phos hilaron

i've begun a new tradition. anybody who knows me knows i'm a sucker for ritual. i find repetition very sacred. for many, routine can breed a sense of disconnect and boredom, especially in their relationship with Jesus. i know plenty of people who attest to variety being the spice of their spiritual life, and that's perfectly fine. but, in a society that is crazed with a constant, unsatiable desire for stimulation, i can't help but wonder if we're always approaching God with a sense of of hyper-expectation. it seems as though we, as a collective, are always waiting for Him to blow us away with undeniable, cosmic signs and wonders. we're waiting for Him to part the red sea. to show up as a pillar of fire. we want manna from heaven. although, to be quite honest, we'd probably prefer if it was something a little more up to date, like eggplant parmigiana or california rolls.

now, i'm not saying that God couldn't drop us some sushi from on high, but when i think about the circumstances surrounding the whole manna situation, (while wandering alone in the desert, waiting on a promise that seemed completely improbable, the isrealites find themselves embroiled in a  rivalry with some crazy guys who seem to be the biblical equivalent of the wildboyz) i see how appropriately God intervened. His actions fit the situation. the situation was big and uncomfortable, and He acted in a big, uncomfortable way. i mean, it's pretty clear that the whole manna situation was not something joe isrealite was particularly pumped about. i think God provided in this way so that His people would learn to rely on Him, rather than His actions or His gifts. and in the middle of all the madness, God was being a stickler for tradition. the tabernacle was no small thing. so much of the establishement of God's relationship with His people was rooted in routine and procedure. God knew that everything going on outside of the tabernacle was a threat to His interaction with His people. they got caught up--we get caught up--with all the semantics, worries, and pitiful drama that define being human. it's like God knew we wouldn't give Him the time of day unless He explicitly commanded it.  but, as usual, i've (sort of) meandered away from my point, so i digress...

back to my new tradition.

like all the ascetics i count among my heroes, i've decided to commit to my own sort of daily church service. i've found a secret spot where i can watch the sun sink behind the mountains. i've developed my own sort of liturgy, with readings from some of my favorite authors including merton, st. teresa of avila, and st. francis.  i'm going to do the same thing every day. i'm going to say the same prayers in the same spot at the same time every day and i'm going to see what God will do when He's given a definite, unhurried chunk of alone time. i expect to be bored, frustrated, surprised, and encountered. here's my favorite prayer from the bunch. it's called phos hilaron, and according to wikipedia, (super academic, i know) it's the earliest known hymn recorded outside of the bible that is still around today.

song of the light

joyous light of glory,

of the immortal Father,

heavenly, holy, blessed Jesus Christ:

we have come to the setting of the sun,

and we look to the evening light.

we sing to God, the Father, the Son and the Holy Spirit.

You are worthy of being praised with pure voices forever.

O son of God, O giver of Light,

the universe proclaims Your glory.

phos hilaron is sometimes translated as--'gladdening light.' gorgeous.

one thing i really don't like about moving is finding a church.  simply because there's such a buffet of churches from which to choose: think dancing is from the devil? try a baptist. need to get your God-fix without the pesky fellowship and obligation to a 'church family'? a mega-church it is! desperately trying to hang on to relevance? find a church with a televised service and a choir made up of 40-somethings.   fed up with 'church'? find yourself a new church plant that's 'breaking the mold.' they're everywhere...just follow the college students. i should know, i was one of them.

not that each of these places can't be legitimate in their heart for Jesus and mission for a hurting world, but it can be quite daunting and exhausting to find a place that resonates. it's especially hard for me, because my home church is my home. it's comfy when your dad is the pastor and you don't have to worry about introducing yourself to people.

but this whole colorado experience has been about taking my faith out of its comfy context and making it stick, like when you throw pasta on the wall to see if it's finished. can my relationship stick despite the distance from its childhood home? is God still God here, so far away from the sea? do i love Him as freely and as recklessly when everybody around me doesn't have all the background information?

now is the time when pushing comes to shoving.
but this whole colorado experience has been about taking my faith out of its comfy context and making it stick, like when you throw pasta on the wall to see if it's finished. can my relationship stick despite the distance from its childhood home? is God still God here, so far away from the sea? do i love Him as freely and as recklessly when everybody around me doesn't have all the background information?
now is the time when pushing comes to shoving.

my grammy died today. with the sun shining on her face and her first and only love curled up next to her. she lived such an unabashed, courageous life. she was the bravest person i'll ever know.

i was able to go home on friday to see her. she looked so beautiful. more beautiful than i'd ever seen her. her skin was glowing, and her eyes were the brightest, clearest blue. she looked like the light of heaven was already shining on her.

we all sat with her. we sang with her. we hugged her, and kissed her and told her how loved she was. we told her that we'd take care of papa.

i slept right beside her on sunday night. i pulled my bed up next to hers and held her hand until the sun came up. i don't think either of us really slept. we just layed together, and i tried to articulate my love to her in little whispers. i told her that any good thing in me is from her and papa. i thanked her for teaching me to love with abandon, and how to choose the right shade of lipstick for my skin tone. i told her she was my hero, and that i always knew how brave she was because i watched her battle her disease for my entire life.  i just told her who she was to me. and even though she couldn't say anything back, i know she heard me, and i know she felt the real hope of heaven.

when i was saying goodbye to her yesterday, i sang 'you are my sunshine' to her. it was the last song i can remember hearing her sing in her sweet, high voice. i kissed her over and over again, and when i pulled away to tell her i loved her and i'd see her soon, she had one big, crystal clear tear sliding down her cheek. down to her last minute, she knew how to love me.

and now i understand what paul meant when he said 'where, o death is your victory? where, o death is your sting?' the pangs of grief i feel are for those of us grammy left behind. but my sadness cannot long linger, because i know that she has already seen Jesus. she is already restored to her full, intended self. the self she should have been, that was paralyzed by sin. she is singing with her mother, she is praising God with all those who came before her.

she is looking into the full face of glory, and she is free.

'you don't have a soul, you are a soul. you have a body.'-cs lewis

i just found out that one of my favorite ladies at the nursing home passed away on friday evening. her name was gladys. she didn't have teeth, which sounds so incredily unappealing, i know. but it gave gladys a sort of charm, because she had the most sweet, pleasant mouth that somehow became more pronounced when she didn't have her dentures in. she also had these enormous, young eyes. they were green and had such a sweet glimmer to them. she was like a little sprite...with a twinkle in her eye and a most mischevious smile.

gladys loved music and hats. she was always chilly, so her family would bring her lots of felted beanies to keep her head warm. every friday she wore this ridiculous purple hat with huge red and green music notes on it to our music group. she loved that hat. and every week i'd say 'why gladys! you're all dressed up for music today!' and she'd say 'i know! i thought you'd like it.' sometimes we'd joke about her having a song stuck in her head.

she had been living at exempla for years. and about two weeks ago, she developed a very high fever, and went into a bit of a comatose state, which is a pretty clear indicator that a person is actively dying. that's the clinical term: actively dying. seems sort of oxymoronic to me...but it indicates that a person's body is about ready to quit.

so gladys was moved to the family room, which is set aside for residents and their families in a resident's last days. it's private, and has sofa beds, etc...so the family is able to spend as much time as they like with their loved one. gladys' whole family came, including a daughter, judy, who hadn't been visiting very much in recent months, because she suffered the loss of her own daughter as a result of huntington's disease. i suppose it was just too hard for her to see gladys. i never heard gladys talk about it...(i'm not even sure how aware she was of the situation, what with her dementia and all...), but i know it was quite tragic and absolutely painful for judy.

when gladys was moved into the family room, we all expected her to die pretty quickly. after all, her body was quitting on her pretty fast and she was basically unconscious, but when i came into work last monday, gladys (as well as her whole family) was still there. she was hanging on for something.

i've realized that when working in a nursing home, with people who are pretty much all over age 75, one has to come to terms with death as a natural, expected occurance. i don't want to say that the residents at my facility are there to die, but they are there to enjoy their last years, or months, or even just days, in safety and peace. the eventual-and natural-outcome is death and it's got me thinking lately.

i don't really have a relationship with death. all my relatives are still living, the losses suffered in my life haven't been devestating. sad, yes. tragic, in some cases, yes. but those who are closest to me and most loved by me are all still toiling under the sun with me. (thankfully.) so, working at exempla has brought this part of the living process into a new light for me.

when it is not hurried, when it is merely the physical shell's natural wearing out that is the cause of death, it becomes an incredibly holy time. it is amazing how present a person can be in the midst of their death. i said that gladys was staying around for a reason. well, on wednesday of last week, judy got the flu and wasn't able to come to the nursing home, because she didn't want to spread her germs around. she didn't show up on thursday or friday either; she was too sick. gladys died on friday night. she simply wanted to soak up the uninterrupted time she had with her daughter, who had been so distant and so sad in recent months.

and even though her mind had slipped away, and she didn't have an understanding of judy's situation, gladys' spirit loved her daughter, and missed her daughter. so, when she had the opportunity to be with her--in whatever small, small capacity--gladys held on and treasured every minute of it. it wasn't until judy had become distant and somewhat unavailable again that gladys felt it was time to leave.

it's incredible, isn't it? our spirits connect, our spirits are present, our spirits are our true selves. and when they need something--to give love, to recieve love, to bask in the beauty of love--there is no physical thing that will stop it. that is who we truly are. that is where we are made in the image of God. and i wish that so many of us didn't wait until our deathbed to live inside of that truth.

summer has such a wonderfully mundane rhythm to it. it feels like a perfectly worn-in pair of shoes, or a pair of jeans the second time you wear them after a wash--comfy. it's mid-july, and i can hardly remember last month--or the beginning of this month, for that matter. i adore that feeling.

the odd thing is that in the midst of this comfort, i've been assaulted with this feeling of future. days are passing, and i feel like they are numbered in the midst of their perfect bore. call it the stage of life, i guess.

how do i prepare my heart for a future that's not yet mine? how do i prepare for all situations? there are supposed givens in adult life which i expect: marriage, family, house, career, children. what if this is not the direction i'm led? what if He takes me elsewhere?

i've been experiencing the strangest rumblings in the pit of my heart. and i regard them with equal parts wonder and trepidation. how could it be possible that i might be led down a life-path that doesn't begin,  include, or end with a husband? a baby? a garden to tend? a dog to walk? a grandchild to spoil? or, even more terrifying, how could it be possible that those desires are being removed from my heart? how could it be that i yearn only for the intimacy of the Risen and the marriage of Spirit? how could i not want a husband? a baby? a garden to tend? a dog to walk? a grandchild to spoil?

what am i, a nun?

it is widely understood, but never verbalized in young-adult female christian circles that your success as a woman is based on your marital status. we are married women before we are women. or--shame of all shames--we are single girls before we are women. it seems the message has somehow come across that you aren't a viable contributing factor to the kingdom if your contributions don't come in the form of a godly marriage and the rearing of a godly family.

so, the goal becomes the husband. and we primp and modify and portray and bend and study and work so hard to find what is not ours to find, to orchestrate what is not ours to orchestrate...because we aren't reminded that our hearts are His before they are joined to a man. nobody ever warned us that the desire for something so good, so true, can become as much of an idol as a golden calf.

marriage is meant to provide an opportunity to act out God's love relationship for us. His love doesn't meet us where we are dolled up and batting our eyes in His direction. God's love meets us where we are honest, unfiltered, and true. in beauty and in ugliness. it is there that we are loved, and there that we are of use.

i now recognize what i'm waiting for--an opportunity to live an example of the Relationship--an opportunity to be Love with skin on. nothing less will do. it really is that simple.

'we will ask the coming King, 'what the hell does this all mean?'
He will answer quietly with His love.
His love overcomes the world.
His love overcomes my fear.'--josh garrels.

there is goodness in every thing.
how incredible.