A statistic: 80% of developmentally disabled people experience abuse and neglect. Physical injuries, mental injuries, sexual abuse, and egregious neglect, often inflicted by family members, other times by caregivers.
Siblings steal life insurance policies left in trust for them, community members take advantage of them. They are isolated, mocked, deprived of basic human rights. They are forced into living situations that would make anyone neurotic or psychotic, then forced to take psychotropic drugs (sometimes with severe side effects) to deal with the symptoms. They can rarely find meaningful employment, find it hard to keep even supported jobs, suffer from lack of transportation, and often endure lives of extreme loneliness.
On July 1, 2009, the state of Illinois, unable to agree on a budget, cut funding to scores of developmentally disabled children and adults, among hundreds of other programs eviscerated. As a support worker for a program that was cut, I spent the past month trying to prepare my clients for the worst, and have written about it in previous diaries. The worst came to pass, and I've not been sleeping too well since.
The union movement, of which I am a strong supporter, has largely been absent in this fight. Where is the solidarity? Where is the cooperation between faith based groups, community groups, and labor, to demand some economic justice, especially for the most vulnerable of our citizens? Maybe your house is not on fire. But make no mistake, your neighbor's is being consumed in an inferno. You should not feel safe. Feeling pretty healthy and independent? So did John, right until a car rollover left him with a closed brain injury that landed him in a wheelchair for life - and in my now closed program. Young and in good shape? Kassie felt great; she was a long distance runner, until at age 17, she had a stroke that left her permanently brain damaged and disabled.
You may be thinking that since you don't live in a red state, no draconian social cuts will be coming to your neighborhood. Well, check out my elected officials. The state of Illinois is run by Democrats. Both our Senators are Democrats ( we lost one of our senators recently, but for a good cause). Our governor is a pretty good guy, for once. The General Assembly is dominated by Democrats. And the battered women's shelter in Aurora still had to close. As did the respite home for severely disabled children in Downers Grove.
And finally, there's my special friend and former client, Will. He lost all his support services the same week he found out his cancer spread. He will be entering a rough and risky treatment program next week. He's long struggled with the frustrations his disability has meant for him and fought hard to maintain what freedom and dignity he could possibly hang on to. We had long talks about why the government wastes money on things that don't help anyone but the rich people while cutting out funds for people who need things. A pretty succinct summing of of the US domestic policy, I'd say....
But now Will is facing the fact that it's very unlikely he will recover from his illness, though he's still ready to fight. He told me it's okay if he passes away because in heaven, he's pretty sure no one is disabled. He won't have to worry about a place to live, or how to afford to eat, or being bullied by people who seem to confuse the disabled with refuse. We live in nation where many poor, sick and disabled people seriously consider death a far better option than trying to survive in this "Lord of the Flies" nation America has devolved into.
I'm still praying Will will be in that 6% who achieve remission from his particular illness. For once, it would be nice if the universe dealt him the break this society has never seen fit to give him. But he's got some peace with any eventuality. I can't say the same for me.
The Jordan is waiting for me to cross through
My heart is aging I can tell
So Lord, I'm begging for one last favor from You
Here's my heart take it where You will
This life has shown me how we're mended and how we're torn
How it's okay to be lonely as long as you're free
Sometimes my ground was stoney
And sometimes covered up with thorns
And only You could make it what it had to be
And now that it's done
Well if they dressed me like a pauper
Or if they dined me like a prince
If they lay me with my fathers
Or if my ashes scatter on the wind
I don't care
But when I leave I want to go out like Elijah
With a whirlwind to fuel my chariot of fire
And when I look back on the stars
It'll be like a candlelight in Central Park
And it won't break my heart to say goodbye
There's people been friendly, but they'd never be your friends
Sometimes this has bent me to the ground
Now that this is all ending
I want to hear some music once again
'Cause it's the finest thing that I have ever found
But the Jordan is waiting
Though I ain't never seen the other side
Still they say you can't take in the things you have here
So on the road to salvation
I stick out my thumb and He gives me a ride
And His music is already falling on my ears
There's people been talking
They say they're worried about my soul
Well, I'm here to tell you I'll keep rocking
'Til I'm sure it's my time to roll
And when I do
When I leave I want to go out like Elijah
With a whirlwind to fuel my chariot of fire
And when I look back on the stars
It'll be like a candlelight in Central Park
And it won't break my heart to say goodbye
'Cause when I leave I want to go out like Elijah
With a whirlwind to fuel my chariot of fire
And when I look back on the stars
It'll be like a candlelight in Central Park
And it won't break my heart to say goodbye