Free State of (Disability) Jones


It’s Independence Day, so I guess it is the ideal time to point out that all Americans are not free.

The film Free State of Jones is a triumphant and tragic commentary on how far independence has come.

Matthew McConaughey glides through the film wearing the same expression for the entire 2 hours and 19 minutes: A white-eyed glare, one angular eyebrow lifted, as he bears witness to the carnage of the Civil War and then the exploitation of poor Southerners, and then further exploitation of slaves and former slaves.


STX Entertainment

I can’t say I enjoyed the movie very much. While normally I would be bemoaning the absence of visuals of McConaughey’s six pack abs or his tight hindquarters (he wears baggy trousers through the entire film), all I could do was make comparisons.

In a nutshell, people who are considered “lesser” on the human scale are exploited for their financial worth. They are given no say in anything that happens to them. They are forced to separate from family and loved ones. They are talked down to, talked over, talked about.

Furthermore, their advocates are targeted with acts of seething hatred.

The same exact thing is happening to my sister, who has Down syndrome.

Bigotry has a wide arc.

Let’s just say the hearing, in which I tried to help give Amanda more control over her life and activities, did not go well.

This was a shameful display of apathy by the justice system. Amanda’s court-appointed attorney never even bothered to contact her. The judge allowed the hearing to proceed though Amanda wasn’t even there to speak for herself.
 Amanda’s court-appointed attorney Charles Palmer admitted that he had not attempted to reach his client prior to the hearing. He had no idea what her opinions were on any of it.
“I thought she would be here.”
Upon learning that Palmer had not even spoken to her, the first thing I did was request that the hearing be adjourned until Amanda could be present to speak for herself.
“Amanda doesn’t need to be here!” said her guardian’s lawyer. “All she’s going to do is mirror everything you want her to say.”
“THAT is not true!” I snapped. “Amanda has her own ideas, trust me!”
The judge shushed me.
The attorney went on to claim that Amanda had cried because she was so upset over going back to court.
I had no doubt Amanda had cried, but I had doubts about the reason. I suspected it was more like she was worrying about me, and upset over the dispute. I didn’t think she was afraid of court. She had not been at all afraid the first time.
After brief contemplation by the judge, my request to give Amanda a voice in the matter was given the smackdown.

Amanda and me, 1984

I referred the court to the case of Jenny Hatch, a 29-year-old woman with Down syndrome who prevailed in a guardianship case in which the judge declared she could live the life she wanted, rejecting a guardianship request from her parents that would have kept her in a group home against her will. Jenny lives with friends and works for them in their thrift store.
“Jenny has an I.Q. of about 50. Amanda’s, as I recall, is in the high 70’s. Amanda has proven that she can hold a job and make decisions and she deserves to have this freedom.”
I endured a somewhat exhaustive testimony in which I had to defend the book Amanda and I wrote together, The North Side of Down, time and again, and I was accused of exploiting my sister for financial gain (it was never mentioned that she gets half the royalties), was told I was no longer a significant part of Amanda’s life, was told that Amanda is doing just fine and doesn’t need to spend time with me.
The session ended with Judge Harold Johnson saying that he didn’t want to undermine the current guardian.
By the time it was over I was so livid that I stalked out of the courtroom without even so much as a glance toward my gloating brothers.
The court documents revealed letters from our sisters, seven and eight pages long, maligning both Ted (Amanda’s current guardian) and me.
Raechel, who wrote from Colorado, even went so far as to say, “Nancy might just decide that if she can’t have Amanda, no one can!”
Uhm, no. I don’t want to kill her. I just want to take her to the movies.
They said stuff like that, and worse.
Oh yes, they really are that crazy.
In what possibly makes matters worse, the passing of the ABLE Act is making Amanda a valuable financial commodity — a lot like the slaves.
I did get to meet with Amanda once, for about two hours, in a Big Boy restaurant on my way downstate. She was calm and seemed content and healthy, but she managed to sneak a couple of comments in.
“I was wondering what Mom and Dad would say about this.”
“Yes,” I agreed. “They would not like this. Not at all.”
All I could do after that was hug her goodbye and tell her I hope I will see her again. And hold back the tears when she clung to me.
Amanda age 8

Amanda, age 8

I can only hope that she is okay. I hope she isn’t too worried about me. I know she is well seasoned to those who talk down to her, to those who don’t understand her brilliance. Her compassion reaches out to all of them, despite how they treat her. She knows so well that she can’t change anyone.
Last night, as I watched Matthew McConaughey drawl his way through Free State of Jones with his baggy pants and awful beard, I understood how advocates suffer. I used to think that the struggle for inclusion of blacks was about blacks.
But now I understand it is about all of us.

About Nancy J. Bailey

Artist, author, bad karaoke singer. Woodsy ragamuffin. Mom of a horse named Clifford who plays fetch and paints with watercolors. He visits libraries and schools with me, to promote literacy and making the world a better place. Yes, he is house trained, no, he doesn't live in my house! I have written three books about Clifford. But my newest book, THE NORTH SIDE OF DOWN, is co-written by my awesome sister Amanda, who has Down syndrome. Her unexpected one-liner wisecracks can always make me laugh. If you make me laugh, you've made my day!
This entry was posted in amanda, disabilities, disability, empathy and tagged , , , , , . Bookmark the permalink.

2 Responses to Free State of (Disability) Jones

  1. lbruce09 says:

    Reblogged this on Out of Me Head.


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