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.