A Credo for Support

The videos to the left of this column have a very powerful message written by a man with cerebral palsy and his wife. When you view humanity in this way, the whole world changes.

A Credo for Support

c. 1995 by Norman Kunc and Emma Van der Klift

Throughout history,

people with physical and mental disabilities

have been abandoned at birth,

banished by society,

used as court jesters,

drowned and burned during the Inquisition,

gassed in Nazi Germany,

and still continue to be segregated, institutionalized,

tortured in the name of behavior management,

abused, raped, euthanized, and murdered.

Now, for the first time, people with disabilities are taking their rightful place as fully contributing citizens. The danger is that we will respond with remediation and benevolence rather than equity and respect. And so, we offer you

A Credo for Support

Do Not see my disability as the problem.

Recognize that my disability is an attribute.

Do Not see my disability as a deficit.

It is you who see me as deviant and helpless.

Do Not try to fix me, because I am not broken.

Support me. I can make my contribution to the community in my way.

Do Not see me as your client. I am your fellow citizen.

See me as your neighbor. Remember, none of us can be self-sufficient.

Do Not try to modify my behavior.

Be still and listen.

What you define as inappropriate may be my attempt to communicate with you in the only way I can.

Do Not try to change me, you have no right.

Help me learn what I want to know.

Do Not hide your uncertainty behind "professional" distance.

Be a person who listens, and does not take my struggle away from me by trying to make it all better.

Do Not use theories and strategies on me.

Be with me. And when we struggle with each other, let that give rise to self-reflection.

Do Not try to control me. I have a right
to my power as a person.

What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.

Do Not teach me to be obedient, submissive, and polite.

I need to feel entitled to say No if I am to protect myself.

Do Not be charitable towards me.

The last thing the world needs is another Jerry Lewis.

Be my ally against those who exploit me
for their own gratification.

Do Not try to be my friend. I deserve more than that.

Get to know me. We may become friends.

Do Not help me, even if it does make you feel good.

Ask me if I need your help. Let me show you how you can best assist me.

Do Not admire me. A desire to live a full life does not warrant adoration.

Respect me, for respect presumes equity.

Do Not tell, correct, and lead.

Listen, Support, and Follow.

Do Not work on me.

Work with me.

compline

Compline is a prayer for the end of the day.  This one comes from Northumbria Community :

The Sacred Three
to save
to shield
to surround
the hearth
the home
this night
and every night....

O God who is one,
O God who is true,
O God who is first....

O God of life, this night,
O darken not to me Thy light.O God of life, this night,
close not Thy gladness to my sight.

Keep Your people, Lord,
in the arms of Your embrace.
Shelter them under Your wings.

* Be their light in darkness.
Be their hope in distress.
Be their calm in anxiety.

* Be strength in their weakness.

* Be their comfort in pain.

* Be their song in the night.

In peace will I lie down, for it is You, O Lord,
You alone who makes me to rest secure.
Be it on Your own beloved arm,
O God of grace, that I in peace shall awake.

Be the peace of the Spirit
mine this night.
Be the peace of the Son
mine this night.
Be the peace of the Father
mine this night.
The peace of all peace
be mine this night
+ in the name of the Father,
and of the Son,
and of the Holy Spirit.
Amen.

and I received...

Several minutes after writing the last post I found this in a book of collected prayers*:

"I don't know who - or what - put the question, I don't know when it was put.  I don't even remember answering.  But at some moment I did answer Yes to Someone - or Something - and from that hour I was certain that existence is meaningful and that, therefore, my life in self-surrender had a goal.  From that moment I have known what it means 'not to look back,' and 'to take no thought for the morrow.'"

Dag Hammarskjold



* The Oxford Book of Prayer, George Appleton, Ed., 1985

are we there yet?

My friend Pam at radical ramblings and thoughts of a southern girl wrote a post today on surrender.  As I envisioned myself walking beside her on that particular path, giving and receiving encouragement, I suddenly burst out, "Are we there yet?!"  I mean, my God, how much more can you ask?  My job, my home, my dogs, my ability to think clearly, my relationships, my very sanity sometimes...what next?  Oh, I know, I prayed with St. Ignatius that you take everything, even my memory, understanding, and liberty, if you see fit, and I meant it, but I didn't realize those things ran so deep.  Now I'm tempted to say, "Just try to take anything more.  I dare you."  And yet I do pray it.  I'm a mess, a bitter, proud, resentful mess.  I offer up my very life, but when you take it I fight to get it back.  Teach me what all this loss is for, what it really means.  Or don't.  But please teach me to love.

genealogy with grandpa

This morning Grandpa greeted me with: "I'm rich."
"Oh yeah?" I said.  "How so?"
"I have a new niece and nephew."
"You mean great-grandkids?  You have two new great-grandchildren."  Congrats, cousin, on the twins!
"Oh yeah.  That's right.  I'm waiting on you for a niece."
"Huh?"
"I'm waiting on you for a niece."
"Well, you're going to be waiting a while."  (For more reasons than one...)
"Wait, what are you?"
"I'm your granddaughter!"
"Oh yeah.  Never mind."

indie ink

This week's Indie Ink challenge came from Grace and was a link:  http://www.dictionaryofobscuresorrows.com/post/9660178280/ambedo.  Check out the dictionary; it's fascinating!  For the challenge, I added to the final paragraph of my antagonist description.

I looked at Grandpa sitting silently across the small table from me.  “Do you want some more eggs?” I asked him.

“No.”

“More juice?”

“No. I’m fine.”

I considered him for a few moments.  Grandpa’s eyes were hidden under his large, bushy, gray eyebrows.  His wiry gray hair stuck out here and there; it was time for another haircut.  His old brown sweater consumed him.  Grandpa looked at me and smiled faintly, but I could tell this was one of his more difficult days.  Grandpa was still adjusting to the changes the past year had brought him: a physical decline which necessitated the use of a wheelchair and kept him from going out of the house as often as he liked.  Driving had been especially hard for him to give up.  I understood completely.  I treasured my independence as much as Grandpa valued his, and the thought of losing so much of it horrified me.  While Grandpa and I were thankful that he had not declined much mentally, it sometimes seemed like a cruel joke of fate.  He knew exactly how much he was missing out on, and on his bad days this knowledge seemed to mock him just as his thick head of hair did in the mirror, sitting atop that thin, wasted body.

Grandpa caught me staring and jerked into action, picking up his plate and rolling himself to the sink.  After putting his plate in the sink he went into the living room and switched on the television.  As he moved I watched the wheels of his chair spinning…spinning…in my mind’s eye the wheels continued to turn, like custom rims...flashing sunlight…abruptly reflecting, turning the light away…gathering shadows…going nowhere…circling…was this really the best situation for Grandpa?  Would he be better off in a place with more people and activities to interact with?  He fights adamantly against the idea of moving out of his home, the home he shared with Grandma for 37 years and in which she passed away.  I’m sure he wants to die here, too.  But what if he’s already dead?

Day 2: antagonist description

I looked at Grandpa sitting silently across the small table from me.  “Do you want some more eggs?” I asked him.

“No.”

“More juice?”

“No. I’m fine.”

I considered him for a few moments.  Grandpa’s eyes were hidden under his large, bushy, gray eyebrows.  His wiry gray hair stuck out here and there; it was time for another haircut.  His old brown sweater consumed him.  Grandpa looked at me and smiled faintly, but I could tell this was one of his more difficult days.  Grandpa was still adjusting to the changes the past year had brought him: a physical decline which necessitated the use of a wheelchair and kept him from going out of the house as often as he liked.  Driving had been especially hard for him to give up.  I understood completely.  I treasured my independence as much as Grandpa valued his, and the thought of losing so much of it horrified me.  While Grandpa and I were thankful that he had not declined much mentally, it sometimes seemed like a cruel joke of fate.  He knew exactly how much he was missing out on, and on his bad days this knowledge seemed to mock him just as his thick head of hair did in the mirror, sitting atop that thin, wasted body.

Grandpa caught me staring and jerked into action, picking up his plate and rolling himself to the sink.  After putting his plate in the sink he went into the living room and switched on the television.  I Love Lucy was on; his favorite.  As Grandpa lost himself in Lucy’s comic genius, I continued to watch him and wonder.  Was this really the best situation for him?  Would he be better off in a place with more people and activities to interact with?  He fights adamantly against the idea of moving out of his home, the home he shared with Grandma for 37 years and in which she passed away.  I’m sure he wants to die here, too.  But what if he was already dead?