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.

songwriting class

A lyric sample from the songwriting class i teach at ASD:

'Love is young, love is old
It makes you fearful and bold
Love you'll take to the grave
Makes you scared, makes you brave.'

Our band is called The August Apples. Look for the debut album sometime...soon. When we buy a microphone.

'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

At work today, one of my (favorite) students reaches out to me and says:

'I thought that was a Mary Beth...it is a Mary Beth! I like a Mary Beth.'

To which I reply: 'Hey, thanks. I like you too.'

He reaches his hands out to me.

I say: 'Yes? Were you after something else?'

He thinks for a minute, then says: 'Yes.'

I say: 'What do you need?'

... ... ...


'I want you to give me a kiss.'

And my heart grows a little bit bigger.

When you ask to be the hands and feet, you have to be prepared.

Being His hands may mean getting yours dirty.

Being His feet may mean staying put.

today at arts and services, as i was chasing my favorite student around the program, trying to stop him from breaking every instrument in sight, i had a thought:

this guy has the sweetest life.

sure, he's got down syndrome. sure he'll never fall in love, or get married, or become a parent, or own his own home, but he has people who love him (including me), a home cooked meal in front of him thrice a day, clothes on his back, and a smile on his face. the best part of his day is when he gets to take a walk and play on a jungle gym. every new thing is a wonder to him--every rock, every sandwich, every smile and every new song he hears on the radio he seems so intent on breaking. he's peter pan; he never has to grow up.

i'm not saying it's preferable; i know that not all people like him are as lucky.
but maybe he's the recipient of a specific type of grace. i can only imagine the types of interactions he has with God. those are conversations i'd love to hear.

much farther to go

i have much farther to go
i'm so confused i know
i should just kick my heels together and go home
but i lost my way when i lost you--Rosie Thomas

this past week, our newest resident--we'll call her agnes--and her family came for their first care conference, which is a quarterly meeting where we discuss the health and happiness of our residents. until she moved in, agnes lived at home with her husband, who cared for her. when agnes contracted pneumonia last month, it became clear that her husband would no longer be able to provide all the care she needs.

they've been married for 64 years.
that's roughly three of me.

and now, they can't be together anymore. i watched him as the doctors and nurses and social workers explained that she's safer and healthier at our facility. they told him how much better her quality of life is now that her time with her husband can be spent enjoying one another. they told him they understood how difficult the transition has been for him.

but i looked at him--at his weathered, compassionate face. his small lips and big eyes. i wondered if he and agnes were high school sweethearts. i wondered if he was ever in the military, fighting to keep her safe like so many other young men of his generation. i wondered how hard he worked to give his wife and daughters the type of life he thought they deserved. i wondered if they traveled much after he retired. i wondered about their first kiss.

and i thought: 'how could any of us possibly understand how difficult this is for him?'
he has fallen asleep next to her more nights than he ever has--or ever will--alone.
he has woken up beside her more mornings than he ever has--or ever will--alone.
how is he suddenly supposed to release what he has fought so hard to keep hold? because, no matter how melodramatic it sounds, it is a battle to make it through 64 years with your love intact. and theirs very clearly is. all he wants is to take her home. a large part of me feels that he is entitled to that. but as the staff gently told him it simply isn't possible, i swear i saw his heart break in two.

and, for her part, agnes was able to comfort him in a small way, but she has dementia, so she isn't able to fully grasp the pain her husband is enduring. she isn't even capable of experiencing her own sadness at their separation. and while that is arguably a blessing for agnes, it means her husband is truly alone--for the first time in 64 years.

and then, my thoughts turned to my own grandparents.
to my own grandfather, who is caring for his high school sweetheart of 64+ years.
she is slipping away from him now, but she still wakes up and falls asleep right next to him.
and i swear, she still lights up when he enters a room.
and he still gives her reasons to.

when you see people like agnes and her husband, or like my own grammy and papa, it's impossible to deny the necessity of togetherness. of connection. of the sweetest type of community.
when i get my chance, it's going to be like that.

'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.

street sweeper operators make $54,000 a year and music therapists make $43,000 a year.

so, here's an idea: how about i drop out of school?
clearly, i don't really need my degree.