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In 72 Hours (of a real life) – A lot can Happen in three days

This July I went to the Disability Pride Parade in Chicago.  Jodi James and I had planned to go, before she was killed in a car accident last September.  I only decided to go at the last minute.  The weekend of the 2010 Disability Pride Parade was an interesting adventure for me that I wish to share with you.

I wrote the following poem after my return home.  This is going to be a rather long blog entry, but a lot can happen in three days.  (I would recommend that if you have not already done so you read  Empowerment Hell)

 

In 72 Hours (of a real life) – By Ramona Harvey

On Thursday

One of my people got a job at Google

And I drove to Indianapolis

To stay at a fancy hotel I could never afford

For one night.

The pillows were soft

But I wouldn’t sleep much

Though I know I should have

Instead, I kept myself busy

Kept myself from thinking too much

I went on a carriage ride

Shared poetry and talk about the book

Enjoying others company

All too aware of who was not there

Who should have been there

As the conversation shifted

To presumptive eligibility for nursing home care

Ten and a half months

Since Jodi James was killed almost instantly

In a car accident

On the day after I last spoke with her

And five days before we were to get together

To celebrate our birthdays, our existence

That we survived another year

She died

Leaving me here to try to understand

Why we would never go to the aquarium in Chicago together

Why so much we planned for

Could be lost in an instant

 

Friday Morning

I packed my bags

Ate breakfast

Pointed my car in the direction of Chicago

And drove

The 2010 Disability Pride Parade will happen tomorrow

Jodi and I had been planning on going

And dragging her brother Jasen along

So he could see what it was like and maybe be empowered

Hard to be empowered here in Indiana

I am aware

Budget cuts are a problem

But the corruption is a bigger problem

Indiana’s Statewide Independent Living Council (ICOIL)

Is supposed to be listening to and empowering people with disabilities

Instead it is a tool of suppression

Used to maintain a status quo

Which serves the State and the corrupted

At the expense of people with disabilities it is supposed to represent

People who can’t get the accommodations they need

Or the information they should have – even when they ask for it

Tax dollars spent so that decisions can be made behind closed doors

So a handful of people can profit and protect themselves

Even if it means slandering the innocent or threatening arrest

Until people are too afraid to protest

For fear of retaliation

This is advocacy in Indiana… or what often passes for it,

I know because I once sat at the table

And would be there now if I had been easy to purchase

And willing to look the other way

Without any consideration for the laws that were being broken

Or the liability I had.

 

I got stuck in a traffic jam and missed my train

Or so I thought, but the train was over an hour late

A veteran saw my dog tags and disability and assumes

That I am some wounded Vet.

He asks about Jodi and I tell him

We are different kinds of soldiers

I explained a little bit about how Jodi and I

Tried to make sure that people with disabilities

Wounded soldiers or not

Had both voice and choice

I told him that Jodi was one of the best advocates Indiana had

Because she could be diplomatic

But she was not afraid to block a door

I told him that she rolled softly and carried a big stick

And because Jodi was not there to finish our joke

I took over her part

Because that is what you do,

when you’re the last one standing

I explained she had to carry a stick

Because her range of motion really sucked

And how else was she going to push elevator buttons

I did a poor imitation, but he still laughed,

I knew Jodi would have been pleased, because I heard her laugh with us

 

The man and I shared conversation and a drink

As we waited on the platform of the East Chicago train station

We talked about constitutional violations and threats of arrest

And what it was like returning home from where he had been

People who had come back wounded,

and people who had not come back at all

It was nice,

Because even though I did not know the people he spoke of

I could tell they were listening in on him, just as Jodi was listening in on me

It was nice to be talking to someone with that kind of understanding

 

Eventually, I got to Chicago

And found my way to open mike night

A precursor to the Disability Pride Parade

There was a lot of talent there

I had not pre-registered but they were able to fit me in

I read “Between Worlds” a prose I wrote in 1990

Which I have included in my book “Unclipped Wings”

Then I sat back and enjoyed the rest of the show

 

After it was over I sat talking with some friends

About the larger then life paper-mache replica of Justin Dart

The one that Yoshiko criticized because it was missing his wedding ring

I never met Justin in person, but I have met Yoshiko

The first time I met her was when I was in Washington

When I was part of the Tennessee contingent

Which was in Washington because of Lane VS the State of Tennessee

Our paths have crossed several times since then

And I admire her for the phenomenal woman that she is

Justin Dart was instrumental in getting the ADA

American’s with Disabilities Act passed, 20 years ago

Many people are echoing his words of encouragement:

“Lead on, Lead on”

A voice from history that has not been silenced

In large part due to those who were left standing

Like Yoshiko and others

 

I leave open Mic night and get an the train

I get on the Red Line, and transfer to the Purple Line

At every stop someone automatically gets a gap filler

So I can safely enter and leave the train

I wonder if people realize how amazing that is

On the Indiana train,

You are lucky if you have a conductor that knows what a gap filler is

Even if they know what it is, they never know where it is

It is late when I finally get to Evanston

I must have been tired

A street sign caught my attention

I thought it was odd, and pointed it out to my companion

“Hey, look at that sign,

I have never seen a No Sidewalk sign like that before.”

He laughs a little, and corrects me,

Pointing out what should have been obvious, but wasn’t

I was too tired

And had not been able to catch or compensate fast enough for my secret disability

It wasn’t a “No Sidewalk” sign at all, but rather a “No Bicycles On Sidewalk sign”

The picture of the crossed out bicycle had been blocked from my view

I was embarrassed and apologized

But I didn’t have too

My companion did not ridicule or assume that I was dumb

I thought to myself, It is nice to be able to openly make that kind of mistake

And not be teased, or made to feel dumb

My thoughts were interrupted by the rain

Not just a light drizzle, but a heavy downpour

We had to walk in it to get to where we were going

By the time we reached our destination

I was drenched –

I don’t understand how the only clothes I brought  managed to stay mostly dry

When they were in the backpack hung on the back of my wheelchair

But they did

It fell  asleep around 2 AM.

 

I could have marched with one of the fancy floats at the Parade

But I didn’t

Instead, I decorated the spoke guard of my wheelchair

With bright yellow smiley face stickers

And attempted to play a purple kazoo

Until I realized that the only thing I could effectively play

Was either “Amazing Grace” or a funeral durge

I gave up on the kazoo

And simply marched behind a simple banner accompanied by some really cool people

We begin chanting

“20 years of the ADA, we are more free everyday”

I know there is some truth to that

But I also know that the ADA, and other laws

Even our constitution

Will only protect us, as long as we protect it

But it is a celebration,

So for the moment, I try and forget all that still needs to be done

And appreciate all that has already been accomplished

 

Last night’s rain has kept many people from the parade

But even with the rain hundreds of people were there marching towards the plaza

Where there would be booths, and live entertainment

It was a good turn out

Though there were fewer booths then the previous time I had attended

Perhaps due to the economy

I saw many familiar faces

 I think Jodi would have liked it.

Especially the music

 

I took the 9:15 train back to Indiana

I had planned to leave earlier, but was not able too

It was 10:00 PM and about to rain when I got to mu car

I attempted to beat the rain

Even accepting help from a stranger to get my wheelchair in the car

I failed in my goal,

But was assured by a friend

It would not rain for the duration of the trip back to Evansville

Unfortunately I would discover my friend was wrong

I drove through some of the worst weather I have driven in for a while

It was dangerous, but I wasn’t afraid

I could have handled the rain,

But when my car started to hydroplane

And the fog made it impossible to see the road

I decided I needed to wait out the storm

Out of a sense of needing to be responsible,

I called the hotels in Terra Haute

But all the hotels were booked,

This did not surprise me or upset me

I just pulled into one of the hotels parking lots

Found a parking spot, and locked the door

I reclined my seat,

Grabbed my wheelchair cushion to use as a pillow

And made myself as comfortable as possible

As I listened to the storm

 

When the storm subsided a bit,

I cracked my windows slightly

To get some air circulating

It was nice sleeping in my car, by choice

Not forced necessity

I drifted in and out of sleep

Waking occasionally to answer my phone

Or shift positions

I didn’t feel out of place, or lost, or drifting

I wasn’t afraid

In fact, when people called,

I just told them I was where I need to be

 

When the clouds cleared, I looked at the stars

I thought about Jodi, my mother and her cancer

But  also Teresa Torres and Roland Sykes

I wondered if Roland had felt the same awe I felt

 When I looked out my windshield

had he felt the same thing

When he looked out the window of his bus –

-          “The Great White Cloud”?

I imagine he did

I thought about the Thanksgiving I shared with Roland

Before Roland was diagnosed with cancer

About how he let me record him

Sharing his knowledge with Jodi and I

I wonder, did he know I would be the last one standing?

 

When the sun came up

I drove to Vincennes

Stopping at Denny’s for breakfast and coffee

Mostly coffee

I grabbed a pair of shorts and an ADAPT  tee-shirt out of my suitcase

I change in the restroom

Sat down at my table

And ordered coffee with cream and a breakfast skillet

Four cups of coffee later, I went to the restroom

Half the people in the restaurant stop what they are doing

To watch me walk on my crutches

As if they had never seen crutches before

It was an odd feeling, but I was back in Indiana

Still, Vincennes does have a Center for Independent Living

I wondered whether they did any awareness activities at all

A little girl, one table over, was asking questions about my disability

She was still asking the questions when I returned

Her mother tried to get her to stop

As if I had not heard the questions before

Then the girl turns to me and asks “What are you doing?”

I told the girl I was eating breakfast

Then waited expecting the girl to ask about the crutches

Instead she informed me that I should have had pancakes

I thanked the child for her advice

As her mother tried to apologize for her behavior

But I stop her

It’s  okay,  I like pancakes

The mother was not talking about pancakes

 We both knew it

She tries again,

 I stop her

I tell her life is short,  enjoy it while you can

Motioning to her daughter

 

I finish a fifth cup of coffee

Decide I am alert enough to drive home

I pay the bill and leave

The mother stops me

As I am getting in my car

To thank me.

I don’t ask why

Instead I hear Jodi’s voice coming out of my mouth again

I tell her not to mention it

That I am just here for the party

Then I get in my car and drive off

 

I drive directly to the church

The air in my car doesn’t work

So by the time I get there

I was wishing it would rain again

So I would be cooler

Instead I was wearing my I Believe onecandream.com baseball cap

To keep the sweat from dripping in my eyes

I parked the car and got out

Realizing then I was about to go to church in an ADAPT shirt

And onecandream baseball cap

But I decided it was appropriate

Because it was me

 

I went in

The pasture asked me about my book

We talked

Then the service began with the song “Healing Rain”

And I almost started laughing

Given my adventure of the previous night

After the service was over a member of the church stopped me

To tell me what an inspiration I was to her

I almost objected

Almost told her that there is no reason to feel inspired

Simply because she saw me walking on crutches

I almost told her I was just an ordinary person doing ordinary things

But I didn’t

Because I realized she wasn’t making a statement about me

Her statement was about her

About how she felt

not how I wished she felt

or how I believed she ought to feel

Who was I to judge or try to dictate her feelings anyway?

Feeling inspired is a lot like not feeling safe, or feeling loved

Another person might agree or disagree with those feelings,

Or might not even believe those feelings are warranted

But that does not mean those feelings don’t exist

Or should be devalued

Or the person discounted

So instead I just said, “I’m glad I could be of service”

 

I made an appearance at the church picnic

Before going home

But I didn’t eat

I wasn’t hungry

Probably because I should have had pancakes

I was too tired and contemplative to be very sociable

But I did have some nice conversation

Watched some volleyball

And enjoyed the sun

With a full understanding that life is not only short

but what happens is often beyond our control or understanding

That someone always has to be the last one standing

Which pretty much sucks

But hey, at least we are here for the party.

 

 

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