Breaking Free – Day 13 (Beethoven)

Day 13 – Wednesday, August 23, 2017 (Beethoven)

7:44 a.m. – Home from a walk that came with a gift. I spent most my time with Ludwig van Beethoven, a hero of mine since I was a boy. I was hooked on his music and his story straightaway. That he composed the Ninth Symphony, in 1824, when he was almost completely deaf, just three years before his death in March 1827, is an act of creation that leads me to be still with its truth and grateful for the moment.

I can’t remember its name, or its author, but there was a biography of Beethoven (and one of Geronimo, by the way) that I read over and over again when I was a boy. I remember the kindness he received from the von Breuning family. He needed it. He was 17, his mother had just died, his father had fallen full-tilt into the death-grip of alcoholism, and, he had two younger brothers.

I remember passages in the biography detailing how Beethoven would go for long walks in the woods, by streams, in all weather, and hear the existence of music – meaning – in all he heard.  This brings me back to this morning’s walk. Beethoven was present the moment I stepped out the door. This morning offered a strong shifting breeze, a sky with a mix of dark clouds and sun-backed white ones – the dark clouds had the advantage – and I could hear the water rushing from last night’s downpour through the man-made channel just yards away. There was movement laced with sounds and shadows and colors and birds singing the day awake. The occasional and not unwelcome soft-deep puff of breeze pushed gently into my ear, brought with it sounds of cello and kettle drum.

Every morning is a gift.

************

 

For ADAPT

 

Equal Rights Are Not a Budget Item

Bigotry never trumps freedom and freedom is not possible without equal rights.

And so it is that people with disabilities are being told having equal rights depends on the economy, thus relegating them to a budget item.

ADAPT, the country’s most prestigious disability rights organization in this writer’s view, has  launched a Defending Our Freedom campaign to address the carnage being inflicted on the lives of people with disabilities. Across this country state budget cuts are forcing people with disabilities, as well as seniors, back into nursing homes, all this in direct violation of the 11-year-old  United States Supreme Court Olmstead Decision which says Americans with disabilities have the right to live in the most integrated settings.

The Kahrmann Consumer Advocacy Coalition (KCAC)  completely supports the ADAPT campaign.  The KCAC will be seeking to address one of the symptoms of this attack on the rights of people with disabilities when members of its leadership team meet Friday with Mark Kissinger, a deputy commissioner in the New York State Department of Health, and his staff. The state’s DOH has recently issued a directive to providers of services to people with brain injuries living in the community that, if it stands as is, will likely send back into nursing homes and put others at risk.

The survivors themselves have sued the state to stop the carnage.

It is appropriate that this piece is being written on the birthday of Rosa Parks, an extraordinary woman who refused to give up her seat on a bus in Montgomery Alabama and, with that single act of defiance, sparked the Montgomery Bus Boycott which led to the end of segregation on the buses and brought Dr. Martin Luther King Jr. to national prominence.

Treating any minority, whether it be people with disabilities, people who are Gay or Lesbian, people who are black, Hispanic, Jewish,  Muslim, and so on as if they are less than human, is not only illegal, it is a foolish strategy. Why? Because the bigotry that blinds people to the humanity of others  leads them to underestimate the will and resourcefulness of the very people they are dehumanizing.

We are born with equal rights. They are not something we need to earn or be given as a line item in a budget.

_____________________

ADAPT Fights Slavery in 2009

The nation’s largest grassroots disability rights organization this week unleashed  24 simultaneous protests at Democrat offices across the country including the Democrat National Committee’s (DNC) office in Washington D.C. and Senator Max Baucus’ office in Missoula, MT. Baucas is the chair of the Senate Finance Committee.

In a very real way, ADAPT is fighting slavery. Federal law requires states to pay for institutionalizing seniors and people with disabilities. However, states have to ask permission! to pay for services that would allow seniors and people with disabilities to live in the community. In other words, the law forces people with disabilities and seniors into institutions and robs them of their freedom.

This is slavery. Hard to believe? I hear you. But it’s true. Consider this; forced institutionalization violates the United Nation’s 1948 Universal Declaration of Human Rights (UDHR). Article 4 of the UDHR reads: No one shall be held in slavery or servitude; slavery and the slave trade shall be prohibited in all their forms.

How can we call robbing people of their freedom by forcing them into institutions against their will anything other than slavery?

Lest anyone doubt the power and significance of the UDHR, consider this. It is the most translated document in the world.

ADAPT is rightfully demanding Congress eliminate the Medicaid institutional bias this year as part of healthcare reform or by passing the Community Choice Act. ADAPT protested at Democrat offices largely because the Democrats are in the majority. However, I would urge ADAPT to protest at Republican offices as well. One party may be the warden, but all the jailers have keys.

Over the years I have become more and more convinced that bringing injustice into the light is one of the most effective ways of destroying. Moreover, I know of a man who said, “I expose slavery in this country, because to expose it is to kill it. Slavery is one of those monsters of darkness to whom the light of truth is death.” He also said, “I didn’t know I was a slave until I found out I couldn’t do the things I wanted.”

Now I can’t do much about it if you disagree with my belief that bringing injustice into the light helps destroy it. Nor can the man I quoted do anything about it if you disagree with him. He died many years ago. His name was Frederick Douglass.

The Kahrmann Advocacy Center

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.

DEHUMANIZING ASHLEY

The parents of a nine-year-old Washington State girl say their decision to sterilize their daughter Ashley and medically restrict her growth will better assure her safety and quality of life. No matter how you hold their decision to the light, the view is tragic.

Ashley lives with a condition called static encephalopathy. According to the National Institute of Health, “Encephalopathy is a term for any diffuse disease of the brain that alters brain function or structure.” Static simply means the condition is not deteriorating. In other words, Encephalopathy is a catch-all phrase.

There can be no doubt that the ethical dilemma swirling around this controversial treatment, performed at Children’s Hospital in Seattle, is in large part linked to society’s failure to make sure people with disabilities are guaranteed the same level of human rights as everyone else.

Ashley cannot walk, talk or swallow food and is cognitively impaired. Her parents are her primary caregivers. In their blog her parents say the treatment “includes growth attenuation through high-dose estrogen therapy, (a) hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley.” As a result of the treatment, the parents say Ashley will “be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around. Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.”

Her parents call Ashley their “pillow angel.”

Whether you agree or disagree with Ashley’s parents and their medical team, there is something disturbing, even barbaric, about sterilizing and altering a child’s growth in order to make life easier for caregivers and allegedly assure the child’s quality of life. It is an honest but misguided belief that the removal of Ashley’s breast buds will significantly diminish the chance of sexual abuse. The absence of breasts will not deter pedophiles and other sexual predators.

It seems to me that the response (pro or con) to the unsettling treatment chosen by Ashley’s parents and medical team is in large measure rooted in a more sinister reality: the continued dehumanization of people with disabilities. What does it say about a society that apparently believes it can best protect a child from sexual assault by sterilizing the child and removing some body parts? What does it say about a society that would rather stunt a child’s growth than provide the community services the child and family deserve? What it says is this. We live in a society still wedded to a social tenet that is simple and wrenching: the greater the damage to a person’s physical and/or cognitive functioning, the less human they are. After all, the parents of a child paralyzed from the waist down would never be allowed to have the child’s legs amputated simply because it would be easier for the child to be physically managed and easier for the child to maneuver a wheelchair in tight quarters because there would be no leg rests.

A report by Dr. Daniel F. Gunther and Dr. Douglas S. Diekema, members of Ashley’s medical team, says “Achieving permanent growth attenuation while the child is still young and of manageable size would remove one of the major obstacles to family care…”

The words that trouble me most here are the words, manageable size. While the words address Ashley’s physicality, they miss her humanity, and that is the greatest tragedy of all. When we lose sight of another’s humanity, we are all lost.