The Tightening Noose

It is very rare my anger fires-up to slam the table top with fury level. Yesterday it did, blisteringly so.

When you are on a fixed income society deems worthy of a rent subsidy (Section 8 in my case) the rule of thumb is one-third of your income goes towards your housing, the subsidy pays the balance.  If you are single like I am, you have what’s called a one-bedroom voucher. The amount of rent your voucher provides for is determined by where you live. A one-bedroom voucher provides for a higher rent in, say, Westchester, New York, one of the wealthier community in the country. For a less prosperous community, the allowable rent would be lower. That’s fine. I’m okay with this.

Okay then. My current lease will be up soon and so I recently submitted documentation of my income to the area housing authority that oversees Section 8.  My monthly disability has gone up $18 and my monthly medical expenses (medication co-pays) have gone up $17.20 which means I am dancing on air with an 80 cents a month increase! (That dreamed about cabin cruiser will be mine in no time!) So, my income is pretty much the same as it was last year, which is why I nearly exploded in fury when I received notification yesterday that my portion of the monthly rent will increase by $45. That’s a big hit when you have a little less than $300 to cover food and gas for a two-month period.

I was boiling. On the phone, leaving a voicemail for the housing authority, hand slamming down on my writing table. Fury. There had to be a mistake. One third of my income to housing, cool. But an 80-cent increase in monthly income doesn’t translate into a $45 a month increase in rent. I was wrong. (Math and I have never been on friendly terms.) What I didn’t see coming was this: the allowable rent for a one-bedroom voucher in my area has been drastically reduced, anything over the reduced amount comes out of my pocket. It is moments like this when I want to throttle those hell  bent on protecting the rich and gut the middle class and the poor because God forbid those selfish slivers of slime sacrifice….what exactly?

Now, if someone reading this responds by attacking the government as if the government was and is this big bad nasty-ass entity, let me ask you something. Where exactly are the offerings from the private sector? Hmm? As for the very small minority who thinks that I or anyone in my position like it here because we are leeches, here’s a thought. Let me give you a segment of my life experience to live with; let me fire a bullet into your brain at point blank range, then come talk to me about how much fun your having.

By the way, the woman from the housing authority that works with me and the staff from the area Independent Living Center were very kind, very gentle, and very allowing of my anger and upset yesterday. God bless’m. They’re in no danger of being overpaid either.

In the meantime, the noose tightens, the pressure mounts. Thank God for books and coffee and friends and music and nature and, most of all, life.

Criminalize Dehumanizing People with Disabilities

If you deny someone their equal rights you deny them their freedom, and for that you should face criminal charges.

This happens all to often in the world of disability. I’ve seen it, endured it, fought it, and will fight it until the end of my days.

If you are going to treat someone with a disability as if their humanity is less whole than yours, you should be charged with a crime. If you are going to treat people with disabilities as if each and everyone of them is a cottage industry for you to profit from, same thing, criminal charges should be brought to bear and if you are convicted you can do the community service by going to jail. In other words, leave the community.

I hear many things from many people on many fronts, particularly in the world of people like me who live with brain injuries. Sometimes I can reveal my sources, sometimes not. Sometimes discreetness is the wisest choice, sometimes in your face is. I am willing to play both cards if I genuinely believe doing so will further equal rights and or hold accountable those who willfully deny others their equal rights.

Here is an example that typifies a lot of what goes on. I know someone who lived with a brain injury. She is extremely bright and nobody’s fool. Were she in a coma she could likely outwit 99 percent of the people I know. Anyway, she was attending a day program and made it known she wanted to get a part time job. So the program tells this woman that they will clear out a little office space they have and set it up with candy and soda that she can sell a few hours a week and she can keep some of the money. This woman said to me, “Do they think I’m stupid or what? Do they think I don’t know that the only reason they’re offering this is so they can bill for the hours I’m in selling their damned candy?” In other words, all this Albany-based provider cared about was not losing the money they would lose if this woman had a part time job in the, wait for it, community!

There was a time in life when I believed that in everyone’s heart of hearts there rested an active or untapped reservoir of compassion for others. Wrong. There are plenty of people that simply don’t care, not at all. And they are the ones that need to be exposed,  criminally charged when possible, and given a leave of absence from the community, and if not the community, a permanent leave of absence from working in an arena designed to help people reach their maximum level of independence.

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A Sister’s Love

The film is testimony to the love and loyalty between two sisters: Sabine and Sandrine Bonnaire. Sandrine is a famous and truly gifted French actress and Sabine is her younger sister, an extraordinary woman in her own right who lives with autism. The film is a 2008 documentary called, “Her Name is Sabine”. It is written, directed and produce by Sandrine.

This brilliantly done piece of work is riveting, wrenching and testimony to the dehumanizing and destructive impact of too many healthcare systems around the world. This loving and unblinking look at how an unprepared and at times uncaring system may well have done more to damage Sabine’s ability to manage life than the autism. Sabine’s experience is anything but the exception to the rule. I have seen the healthcare system in my own country destroy lives and demolish hope. I watched the film online on Netflix online at times could not see the screen through the tears.

I have been blessed with the experience of seeing some truly special relationships between sisters. My ex-wife Paula and her sister Tracey had and have a bond so loving and close no power on earth can sever it. I knew four sisters: Diana, Cindy, Nora and Sylvia that were and are dazzlingly close. Like Paula and Tracy, watching them in a room together was so much fun that going to a movie, Broadway show or concert was boring by comparison. There is no doubt the bond between Sabine and Sandrine is just as deep and just as glorious.

While I will not give much of the film away because I am hoping you will make a point of seeing it, there are moments that make you cry and moments that make you laugh. A wonderful example of the latter was when Sabine is going swimming at an indoor pool. When she is checking in she says to the man at the counter,”Go fuck yourself.” When the woman with her points out this might not exactly be the most effective approach, Sabine looks at the man and says, “Bonjours monsieur. Don’t go fuck yourself.”

Sandrine and Sabine make another powerful point in this film. People with disabilities are people too. They deserve equality because they are equal. Not because we ought to be nice enough to let them think they are. Neither do they deserve to be medicated into oblivion, enslaved in houses and institutions. They deserve their freedom. It ought to be criminal act when giving people their freedom is deemed to be too tall an order.

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For two mother’s who know more than most: Patty Black and Paula Gudell

Charles Dickens & Disability Rights

I have come to believe disability is in the eyes of the beholder. In fact, the inability or unwillingness to grant someone their humanity because of a challenge they face on the physical or cognitive front is the biggest disability of all; it is the very disability that denies people their freedom.

For some time now I have wondered how best to reveal the dehumanizing treatment people with so-called disabilities often endure. I say so-called because those who do not see the humanity of others are the most disabled of us all.

I have both seen and heard so many examples of dehumanizing and humiliating treatment it’s hard to know where to begin. I know of one instance where a director of a brain injury program in my state told the wife of a brain injury survivor, who was sitting right there listening to this, that a formal funeral needed to be conducted for him because he no longer existed and that his wife needed to allow this program director and his team to recreate him. The director added that it would be a good idea for her husband to attend.

I know of another program where a workshop facilitator with the compassion level of Mussolini locks the doors to the room when a workshop begins and berates those who may need to use the bathroom for not having gone before the workshop. Moreover, he denies people admittance to the workshop if they are late. I have personally heard this “Mussolini” in action, bellowing down a public hallway to survivors, “Okay now, let’s get moving, workshop time. Lets get moving, kids!” Keep in mind he was talking to about four or five adults, one of whom was a squad leader during the Vietnam War. When “Mussolini’s” behavior was brought to the attention of the little dandy of a company owner, he said something to the effect of, Oh my, that just can’t be possible. I’ll look into it, which means, of course, that he won’t do anything of the sort.

So, my point is, it is easy to give you examples that will, if there is a heart beating in your breast, break your heart and turn your stomach.

But it was a sentence from an extraordinary two volume biography of Charles Dickens by Edgar Johnson that opened my eyes to what may be the best way of telling this story. Dickens himself lived a brutally rough childhood. His family was sent to debtors prison and Dickens, his hopes of becoming an educated gentlemen being, in his youthful mind, forever lost, found himself working in a blacking factory. All his life Dickens wrote with a keen awareness of the brutal circumstances faced by the poor and the punitive way they were treated by society. It is still true in too many instances in my country and it is certainly true in the way people with so-called disabilities are treated.

But Dickens understood that revealing harsh realities by merely telling of the horror was not the most effective approach. Instead, Johnson writes, “it was Dickens’s aim not to turn the stomach but move the heart.” And so we have Oliver Twist and David Copperfield and many others who move our hearts.

And so I have determined, that here in this blog, and in a book that is beginning to make its way onto the page, I will try to move the heart. Yes, like Dickens, I will reveal the horror of things as I have done a bit in this essay. But, when the horror of a behavior is linked to a human being you care about, the “Mussolini’s” of the world are more likely to be overthrown, which is as it should be.

Kahrmann Center for Human Rights

A steering committee has begun work on the formation of what is now being called the Kahrmann Center for Human Rights. At first the thought was to call it the Kahrmann Advocacy Center, but the name has now been changed and, given the talent and creativity of those on the committee, may be changed again. I am humbled that this is happening and whole heartedly committed to its cause.

In brief, the Center will be committed to doing its part to make sure all people are able to live in freedom. In many ways living in freedom means being able to be who you are safely in the world you live in. Safely comes with equality. After all, equality and safety  are siblings. You can’t have one without the other.

Given my life, and the corner of the world I find my life most connected to, at the moment, I am sure the Center’s first work forays will be into the challenges faced by people who live with disabilities, primarily, at least at the outset, people who live with brain injuries.

Though we don’t pretend to know the all of the solution, the number one complaint I hear from people who live with disabilities is the tendency on the part of many to treat them as if they are children. A brilliant friend of mine who lives in New York City told me recently about being part of a group designed, or, better put, allegedly designed to help people with brain injuries tackle problems in life. The group began when the facilitator, in a voice so sugar-sweet it could catapult a diabetic straight into a coma, clapped her hands and said, “Okay now, we’re here today to discuss problem solving! Who wants to go first?”  She was talking to a room full of adults for God sakes!

No doubt one mission will be to assist in helping people figure out that living with a disability, no matter when it enters your life, does not return you to childhood. My closest friend of 35 years lost his legs in Vietnam when he was 19. The war took his legs, not his age.

When it comes to working with people who deal with disabilities in their life, it is not a stretch to say that one of the biggest, if not the biggest obstacle the face is the very system that claims to be there to help them.

Anyway, enough for now. More later. Remember to live.