Category Archives: disabilities

It’s All Civil Rights

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Anytime anyone is being denied equal treatment under the law they are experiencing discrimination and their civil rights are being violated.

According to statelawyers.com “discrimination occurs when the civil rights of an individual are denied or interfered with because of their membership in a particular group or class.” Setting aside my personal distaste for the context in which the word class is being used here,  the key component of the quote is “all people”. Not just people who live with disabilities, or people who are gay or lesbian or black or Latino – all people.

The fact some do not see gay and lesbian civil rights, or disability civil rights, as civil rights issues does not make them evil. It’s simply testimony to the learning curve or, perhaps better put, awareness curve they need to travel. Many years ago I saw a documentary in which Dr. Martin Luther King Jr. was attacked by a white man in his fifties. Dr. King was unhurt, the man was quickly subdued and, I would presume, arrested. The audience was angry. Dr. King asked them what they would believe if they had been told every day for fifty years of life that blacks were bad.

Many of our brothers and sisters have been raised to experience people who live with disabilities as being less than others. Many have been led to believe that  people who are gay and lesbian are somehow out-of-kilter on the moral front. The fact that these beliefs are welded into the minds of too many does not give them credence or accuracy. Instead, those that live out and spread these beliefs further poison our culture’s ability to experience each other as equals, which is what we are.

The denial of equality is the denial of civil rights. It’s all civil rights

Memo on Disability & Civil Rights

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Some say the lack of equal rights for people with disabilities is not a civil rights issue.  Not seeing the lack of equal rights as a civil rights issue is like getting caught in the rain and claiming your predicament has nothing to do with the weather. It is a civil rights issue, very much so. Anytime anyone is being denied equal rights it is a civil rights issue, and I would gladly debate this publicly with all comers as long as the debate is on the record.

While I can’t define the all of what drives this misguided view, some of it is no doubt rooted in the centuries-old belief that a person with a disability is merely an abbreviation of a human being, not the real thing. In fact, the real disability rests in the hearts and minds of those who are unable to  see that the humanity in someone with a disability is whole. Managing this disability is one of the major challenges facing a movement that from here on out I will no longer refer to as The Disability Rights Movement. Instead, I will unfurl the banner to its full length and call it what it truly is, The Disability Civil Rights Movement.

I am urging everyone to grow the phrase on the banner from disability rights to disability civil rights and to do so as soon as soon as possible. After all, if the task is to help others discover people with disabilities are whole people, the least we can do is let them see the whole banner.

A Sister’s Love

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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

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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

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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.