Bezos Flight and Fancy

I was drawn to the launch of Jeff Bezos' Blue Origin like millions of others. My guess is that it has something to do with the excitement of watching the human quest to do more or to be first. But my interest was quickly turned to scorn, pity and some real disgust as I realized the depth of the inequality and arrogance of rich, privileged, white men represented by Bezos. He hasn't been very visible in my world until yesterday. I had never seen an interview or any in depth coverage of him as an individual. My sense was that he was a bit reclusive other than sending some x-rated selfies to a new woman friend.

But all that changed yesterday. He exposed himself very clearly as the new age colonialist of our solar system and perhaps all of space. It began with the visual of a grown man attempting to be a down home boy with his old cowboy hat versus a helmet for a space flight. I should have known at that point that we were all in for a not so pleasant ride.

Commentators began talking about the public, private partnership that had led to this day. How a private company (not just one by the way) was creating all of this new technology for the government (actually for the highest bidder). Of course all of this came with some government support, contracts, etc. Wait, hold on! Jeff Bezos, the wealthiest man in the world, is getting government support and contracts? Let that sink in for awhile. Another great partnership that your government has gotten you into. The wealthiest man in the world, the man who pays little to no taxes is getting taxpayer support for his projects into space. Hmm..

Up, up and away, but not for long. A return to earth and a capsule surrounded by more wealthy people wearing more cowboy hats in adulation of their friend, benefactor, shaking bottles of champagne in the heat of Texas at 8:30 in the morning. None of this seems right at the moment.

When Bezos speaks, he speaks about space colonization. He describes the world he envisions for everyone else, where all industry is moved to other planets to save this one. Earth will just be for living. Industry and work will be elsewhere. He compares this vision to his creation and development of Amazon. Everything starts small. Today is just the beginning. He sees nothing wrong with the fact that no one else has had anything to say about what he's proposing. He's thought it out, he's figured it out for all of us and he promises there are absolutely no other planets like this one in our entire solar system, so there.

As any good patriarch does, he thanks all of his Amazon customers and employees, who he acknowledges actually paid for his few minutes in space. It all ends with him handing out $200 Million in Courage and Civility awards that he must hope, help cover and forgive a multitude of sins and omissions.

All of this is in the best and truest of the capitalist traditions and it would be unpatriotic to think anything ill of it. Yet at the end of the day, the poor continue to be poor, the homeless continue to be homeless, workers continue to be exploited for profit by a few, and the endless wars continue. Our planet is dying and suffers from the abuse we all continue to put her through. Mother Earth, wars, hunger and poverty aren't just part of a game played by wealthy, privileged, white men. They represent billions of people who need community, who need help and support. Jeff Bezos, no matter what he thinks, doesn't have all the answers.

Influences

Everyone's life is influenced by someone, something or in most cases many things. I've recently given some thought to my own influencers over the years. Here are the one's that I think had the most impact:

Family of course is right up there with all of the other things but my maternal grandmother, an immigrant from Ireland as a youngster, had much influence on me. Her stories, her faith and her life helped form a good part of who I am. Also my older brother. He has always looked out for me and been a protector of sorts. He helped lead the way.

I was also influenced by life events. When I was 5 or 6 as a youngster at the Jersey shore, two of my siblings and I had polio including some paralysis. We all recovered but I think that experience early on gave me some sense of the impact of a disability and how it could affect a person's life.

There was a point in our lives when my mother had a Black woman by the name of Alma who came and helped around the house with laundry and cleaning. I spent hours with Alma learning about her faith and music. She introduced me to the likes of Mahalia Jackson, the great gospel blues singer. Also, just by being herself, Alma helped me begin to understand inclusiveness and diversity.

I spent a fairly short amount of time in a Catholic seminary right after high school. The time though, beginning studies to become a Maryknoll priest, had a major influence on my values and where I would go in life. Maryknoll as an order is known for the involvement of its brothers, sisters and priests in social justice issues throughout the world. Fr. Raphael Davila, a teacher and guide at the seminary in Glen Ellyn, Ill., had a major impact on my understanding of social conscience.

In 1965 I became involved in the demonstrations that followed Bloody Sunday in Selma Al. There were many famous people and leaders involved in that action but I was mostly influenced by the young people of Selma. They weren't famous or fancy but they were fearless and certainly had heart. I stood on a picket line with them singing songs and confronting the local police. I learned about courage and standing up to power from those young people and it would travel along with me for many years.

Dorothy Day and the Catholic Worker molded me and helped me clarify my thoughts about war, peace, poverty, the Works of Mercy. The concept of personal responsibility and standing up for one's beliefs became clear and evident.

Time I spent in federal prison was a great influence, some good, some bad. My incarceration helped me understand incarceration in general and what happens to people when others control their lives for long periods of time. People in institutions of all kinds including the military, facilities for people with disabilities, nursing homes, etc. all see the results of power and control.

People with disabilities themselves and their families have influenced me greatly. Learning about treatment, mistreatment, goals, hopes and dreams that people have for themselves. Learning to listen to voices that are sometimes hard to hear or understand has been critical.

Finally of course my collaborator, friend, partner and spouse has influenced much of who I am.

In the end, it's all connected. All of the influences and all of the values come together and become part of a pathway. I'm very happy with the path I took, the friendships along the way and the changes that were at least attempted.

The Shoe Is On The Other Foot

I spent almost 40 years trying to support people with intellectual, developmental and physical disabilities. Yes, I say tried because the issues are so big and in many cases difficult when it comes to supporting people with disabilities. Systems, bureaucrats, politicians don't make it any easier.

I began my career in the disability field as a direct support worker and ended it as a nonprofit administrator. During that time, large institutions closed and people began to be accommodated in the things we all do, things like shopping, working, and playing. In simpler terms, just being able to live their lives like the rest of us.

While working in this field there was an inordinate amount of time spent talking about what we should call the people with disabilities who we were supporting - clients, participants, consumers and more. Eventually, I figured out after all the talk, that just calling people, people, or by their own name actually made the most sense. That's what you and I would want, isn't it?

Which brings me to the main point of why I'm writing this. I'm now a person with a disability, a progressive and incurable lung disease that every day prevents me from doing the most basic things and will eventually lead to my passing. Each day, something becomes a bit more difficult. Yes the shoe is on the other foot. Now I struggle to get from the front of my house to the back or to a doctor's office or a lab for an appointment or a blood test. All of these are difficult tasks due to my increased shortness of breath. 

I've also learned about how frustrating conversations with service coordinators or chronic care coordinators can be. These conversations are all part of an aspect of my health care and my health insurance. New and different people call to offer me help and assistance but most are unfamiliar with my disease (Pulmonary Fibrosis). I have to spend time educating them and in the end we usually agree there's not much they can do to help. Then they call again the following month and we discuss the same issues again.

It is becoming more and more difficult to get out and about. When I do venture out, I show up with my noisy and funny looking oxygen machine. I have to make sure I have back up electricity or batteries and even a small travel tank of oxygen. Of course its not just the oxygen. There's the tubing, 50' of it in my house, a tangle of trip hazards and 7' sections for travel. All of this has happened with the backdrop of a pandemic which has certainly added to the challenges. Questions arose quickly about vaccines. Initially challenges about where and when they could be gotten and then more questions about side effects relative to special conditions or diseases.

Of course with any rare disease that's life threatening, the issue of medications and prescription drug costs comes up. I currently take a medication that has the potential of stopping the progression of my fibrosis. But here's the challenge. It costs $10,000 per month or $120,000 per year and it comes with some pretty awful side effects. With my insurance I can get that cost down to $8,500 per year. Luckily, with the help of my doctor and a specialty pharmacy affiliated with a university, I was also able to find a foundation that has assisted in covering much of this cost. But there are many situations and medications that people battle over and few people realize how lives depend on those battles.

One of the things that was always frustrating to me when I was working with people with disabilities were  fights you had to wage for pretty basic medical equipment, including mobility equipment. Now I'm faced with the same challenges, being denied a non-invasive ventilator due to, not just expense, but because the insurance provider doesn't understand the equipment or its purpose. Appeals, appeals and more appeals lead to nowhere. The only real answer is finding a provider who will pay for and support the use of the equipment. Of course in our current system of health care, you can't just switch insurance any time you want, you need to wait for the new enrollment period.

I have wonderful care and support provided by my partner and spouse. The hardest part for me is realizing  the things I can't do anymore. Some are pretty basic things, others are more complex. I can't get down to the lake I love but I can see it from up above. Going out to other places or even just for a drive becomes more difficult as time goes on.

I have to fight dwelling on regrets and try to live in the present. In some cases that's easier said than done. I'm experiencing some cognitive and gross motor losses which make writing my memoir and this blog more challenging and I've found that I've had to cut back on those things. That of course is a disappointment but I'm going to keep trying. When someone asks how I'm doing I struggle to find the real answer. 

This is certainly not a call for sympathy or anything else. We all have to deal with challenges, some very real, others perhaps imagined. At this point I'm simply recording a journey that changes day by day. It's my own recognition that the shoe certainly is on the other foot at this point in my life.  I continue to learn through experience and understand more clearly much of the frustration I saw from disability rights groups over the years. Yup, we're 'Not Dead Yet' and we want to be treated fairly and with dignity. Something we all want.

The Great Scandal of The Age - Dorothy Day's Word On The Eucharist

"The great scandal of the age is that those without the sacraments are so often superior in charity, courage, even laying down their lives for their brothers, to the 'practicing Catholic' who partakes of the Sacraments of Penance and Holy Eucharist and then stands by while his brother is exploited, starved, beaten, and goes on living his bourgeois life, his whole work being to maintain 'his standard of living,' and neglecting the one thing needful, love of God and brother." Dorothy Day March, 1954

Ah yes, Dorothy Day had something to say about the Eucharist and those who would like to put themselves above others, especially the poor. The poor who make us uncomfortable with their odor and filth. The poor who make us uncomfortable with their illnesses and put such a burden on the rest of us. The poor who have to work two jobs to make ends meet. Or those who finally realize that a government benefit pays more than a sevice job.

The US Catholic Bishops Conference is prepared to question who deserves the Eucharist. What hypocrites in fancy robes with rings, special hats and crosses around their necks. These are men who have overseen the abuse of children in the diocese that they lead. They have, for the most part, excluded gay, lesbian and transgender people from the sacraments and from their worship. These are men who really don't seem to know Christ or his teachings. They should study who and when Christ excluded people from his teaching.

As these sacramental policeman look for how to exclude people from the ranks of the church, they do so while living very well. Wonderful homes, gracious meals, making themselves comfortable before they comfort those who need it. Their behavior is shameful but not a surprise. Many people have left the church because of these so called leaders. Others accept the fact that the church left them. The church and leaders like this have left us on issues like war and peace, economic equality, racial justice, and so much more. Abortion has become the end all of their preaching with no recognition of a woman's role in her own life or the life of the church. 

I am not surprised that the US Catholic bishops have lost their way. Honestly they could never be depended on for the leadership that's necessary in an inclusive church. They have had their chance and have failed every time. 

God help poor Francis. Dorothy Day pray for us.

Donald Trump's Legacy - An End to Democracy

At this point I believe that democracy as we knew it in the US, ended in 2020. Many will find it hard to accept. Others will say that it hardly existed in the first place. But Donald Trump's legacy is that he and his Republican partners have in fact brought an end to democracy in the US and the same end to democracy is now spreading internationally.

It was easier than anyone thought. No blatant coup, no nuclear arsenal let loose, no troops deployed. It proved to be simple really. Lies, lies and more lies told over and over again and pushed through a disinformation campaign using the media and high tech companies to communicate the message.

Initially there were Republicans who were as horrified as anyone else at the gross untruths and methodologies but once people in that party's leadership realized the potential for their power-base everything changed and it changed dramatically. People may not have come on board until a few months into 2021 but the big lie had been seeded right after the 2020 election.

Yes, the big lie ended it all. It makes some feel good to continue to refer to it as a lie but in fact none of that matters since the lie has become enough of a truth for enough of the people. Yes, what killed democracy was the accusation of fraud in the general election. The allegation of widespread fraud, real or imagined is now an accepted tactic to be used in every election with a recognition that the allegation itself is enough to sink the results. Even if a winner is declared and certified, the people who declare and certify are determined to be part of the fraud. And just so it's clear, this tactic can and will be used by any party who loses an election.

Add to all of this legislative efforts to suppress and reduce voting rights which makes voting itself more difficult and more controllable. It becomes pretty clear that democracy doesn't have a chance in this environment.

None of this means that democracy can't come back. It can but people need to realize that it will be a fight like no other. It will require commitment and belief. It will require cooperation and negotiation. It will require radical confrontation with powerful people. Sadly, it will most likely lead to some level of violence by one side or the other and possibly both. Institutions of government as we know them, the House, the Senate, the Courts will all most likely undergo major changes. It will take brave people to stand up and speak truth to power.

I have no idea how any of it will end but I do know that this is Donald Trump's legacy and he has lots of partners.