Tag Archives: disabilities

A Sister’s Love

Posted on by
Reply

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.

———————————————————————

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

Charles Dickens & Disability Rights

Posted on by
2

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

Posted on by
2

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.

 

The Kahrmann Advocacy Center

Posted on by
3

Some say its been a long time coming, but I’ve decided to form a not-for-profit company called The Kahrmann Advocacy Center.

There are several reasons for this, not the least of which is my ever-increasing awareness that grievance and complaint policies available to citizens are, in far too many cases, not worth the paper they are written on. There are some  instances where filing a grievance is tantamount to writing your concern on a piece of paper and then throwing it off a cliff. You’ll never hear from it or about it again.

Not acceptable.

All of us have a right to be who we are safely, with equality, in the world we live in. What I am talking about here is, in a word, freedom. The freedom to be who you are.

While the Kahrmann Advocacy Center may find its initial traction in the world of brain injury and the world of disability, its scope must, in the end, be universal. My dream is to see the center advocate for all those who find their rights infringed on. This includes, but is not limited to, Blacks, Latinos, Asians, Gays, Lesbians, Christians, Jews, Muslims, Buddhists, people with disabilities, Veterans, and so forth.

In a recent speech I spoke about the importance of equal rights: “These rights – your rights – will die on the vine of hope if they are not given the water of respect and the sunlight of dignity.”

I’m hoping the Kahrmann Advocacy Center will bring a little water and sunlight to the world.

BACK ON DISABILITY: SOME REFLECTIONS

Posted on by
3

I am going back on disability. I never wanted to say that sentence, much less write it. However, reality is a harsh master at times, and if there is one thing that has never been in the same room with bigotry, it’s reality.

Long ago, I learned that life happens to us whether we like it or not. What was it John Lennon wrote years ago? “Life is what happens to us while we’re busy making other plans.” So true.

If memory serves, I was on disability from 1985 to 1992. In 1992, after my mother committed suicide, I threw my all into getting off the disability rolls and succeeded. Although, when I told Social Security I wanted my benefits to stop I threw them into such a tizzy I began to think I’d asked them to explain Einstein’s theory of relativity by mistake.

My focus now it to do my best to make sure certain things in my life remain stable and strong: first and foremost, my sobriety (without that, all else perishes); my ability to help others by bringing them a message of hope that is based on real truths with real strategies, not just the kind of pie in the sky bullshit; my writing; and my ability to advocate for anybody who is being denied the right to be who they are safely in the world we all live in.

Human rights covers everyone and equal rights belongs to everyone – and I mean everyone: people who are gay and lesbian; people who live with disabilities; people from every religion; people who are poor; people who are rich; blacks, whites, Latinos, Asians, Arabs, Israelis – everyone. Everyone.

You can rest assured I will keep writing too.

I am closing in on the end of my memoir and I am going to send it to some agents. If any of you can suggest a reputable one, let me know. I may well send it directly to some publishers. I’d be open to any suggestions on that front as well. I have two novels churning around and I recently decided to write a book about what it has been like to work in the field of brain injury for nearly 15 years.

I’ve gotten some interesting feedback on the book last mentioned. Some people are thrilled and some are, well, worried, and some are scared. All I can say is I have no targets. My intention is to write it honestly and, as the saying goes, let the chips fall where they may.

Like any field I suppose, the field of brain injury has some extraordinary people working in it. There are company owners and management folks who are great. There are , you may be surprised to hear, people in the government, in the regulatory agencies, who are also great.

However, there are those in the aforementioned categories that belong on the other side of the coin from great, the darker side, if you will. There are those driven by greed and the lust for power. There are others, too many others, who descend on a badly wounded population of people with the sole intent intent of controlling them and manipulating them, in some cases through intimidation, so they can keep them in their programs or in their facilities to make money off them. Sadly, many of our badly wounded in life brothers and sisters find themselves herded into socially-approved corrals where their vulnerabilities coupled with the design of these corrals makes it a near certainty their rights and dignity will be taken away. I have witnessed this and fought this and paid the price for doing so over the years. I am paying the price even today. But this is something I am willing to give my life for. And if that happens down the road, I’ll be in good company.

You need to know that while my pen fiercely abhors dishonesty and distortion, its loyalty to honesty and clarity is unflinching and ferocious. There are some in “high places” today who go through their days wedded to the sadly mistaken belief that they are invulnerable. Wrong. Remember what I said at the beginning of this essay? Reality can be a harsh master. Always it is a just master; it spares no one.

Over the years, we have all seen many of the so-called mighty toppled from toppled from their perches, their eyes glazed over with disbelief, their expressions seem to say, “How could this happen to me? I was in my impenetrable fortress?” We’ve all seen it. Their faces etches in bewilderment, shock and dismay, their tormented expressions crying out, “Poor me! Poor me!”… Oh well…

But for now, it is back onto disability for me. As time goes by the impact of the damage I live with from the shooting changes. However, there is one thing that will never change: my unflinching commitment to doing all I can to advocate for every person’s right to be who he or she is safely in the world in which we all live in.