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.

Remembering Dan Berrigan

Recently there have been numerous postings and articles about Dan Berrigan, the Jesuit priest who stood up for justice and peace many times during his lifetime. April 30th, 2021 was the 5th anniversary of his death and May 9th, 2021 would have been his 100th Birthday. As a result, many who knew Dan or people who looked up to his actions or values have found ways to commemorate these dates. On Saturday, May 8th, I'll be participating in a Zoom event hosted by John Dear from his Beatitudes Center, "Celebrating Dan Berrigan's 100th Birthday".

Jim Forest, author of "At Play In The Lions Den, a Biography and Memoir of Dan Berrigan", has also written much about Dan recently. Jim and Dan had a close relationship based on their involvement in the founding the Catholic Peace Fellowship in the 60's. Jim's insights are important and impressive and anyone interested in learning more about Dan would be well served by reading Jim's biography.

I knew Dan from my involvement at the Catholic Worker in New York City in the mid 60's. Dan was a frequent visitor to the Catholic Worker at that time participating in Friday Night Meetings, performing Liturgies or visiting with Dorothy Day and everyone else at St. Joseph's House of Hospitality. Dan, like most of us, was evolving during that period of his life. He was being affected by the war in Vietnam, racial injustices and poverty. He was counseling young men about the draft and promoting conscientious objection as a legitimate Catholic response to war. At the same time he was being affected by young people, men and women, who were already making decisions about the war and resistance to it. He was, I think, challenged by the difference between talking about resistance and actually resisting.

When the Catholic Worker became involved in draft card burning, initially by one of Dan's students, David Miller and then at Union Square in 1965, through the involvement of Dorothy Day, Tom Cornell and myself, Dan was watching closely. He was understanding the significance of the events and supporting them but also like many, wondering where would they lead.

A few days after the draft card burning at Union Square, another young man associated with the Catholic Worker, Roger LaPorte, walked to the UN with a gallon or so of gasoline and set himself on fire. Roger made statements about being a Catholic Worker and being against war, all war. Roger died a few days later. There are lots of stories about Dan's involvement with all of these events. Here's what I know. Both Dorothy Day and Dan Berrigan were concerned about the impact of Roger's action and death on young people broadly and specifically on the young people at the Worker. There were some within and outside of the Worker who wanted to quickly condemn Roger's action. Both Dorothy and Dan, separately, knew that life and this death were more complicated than that. Dorothy struggled with public perceptions and Dan worried about that close knit community of young people that he had come to know.

I was a part of the group of young folks who were impacted by all of this. We didn't like the way statements were being made about Roger and his action. We didn't like the media circus that naturally ensues when something as significant as this happens. We were struggling ourselves with Roger's frustration about protests, draft card burnings and their ineffectiveness against the war. We were of course a community, 10 or 12 of us brought together by our relationship with the Catholic Worker. When Roger passed, we got together for our own private response, a memorial that evolved into a Liturgy. Dan came to participate. We shared bread and wine. We prayed and remembered Roger. Dan became our pastor and blessed the gifts. He said some comforting words. We hugged and cried. Much has been made about this event. I have no doubt that it was a direct reason for Dan being assigned out of the country to South America and basically silenced for his opposition to war and violence. But it certainly wasn't as formal as some have implied. 

Dan and his brother Phil were influenced by all of this and went on to become leaders of the Plowshares movement in opposition to nuclear weapons of mass destruction. They both wrote and talked about the influence of these early events and their own evolution as leaders in the resistance movement. 

Some of what all of these discussions and remembrances of Dan reminds me of is his love of and constant searching for community. Actually, he made it seem very easy. He found community in small groups of friends, large demonstrations or gatherings, or with just one other human being. He thrived on community and was constantly seeking it out and in the process making everyone else comfortable in finding it. But he also enjoyed the search and the reach. He would go to every corner of society to find community and that's where the Eucharist would take place and everyone, but especially Dan, would enjoy it. Happy 100th Dan. Rest in Power!

Here is a musical remembrance of the Catonsville action that both Dan and Phil Berrigan were a part of. Thanks to J DeFilippo for this: War No More

88th Anniversary of The Catholic Worker

Today, May 1, marks the 88th anniversary of the Catholic Worker movement, founded by Peter Maurin and Dorothy Day. Soup-lines, Houses of Hospitality, Farm Communities, newspapers and newsletters, demonstrations, protests, arrests and jail time are all part of that history and continue today around the world. Workers and scholars clarifying thought through discussion. A no nonsense philosophy of personalism and Christian anarchy have always been at the core of the Catholic Worker. Thousands upon thousands have been impacted in someway. All of this will continue long after many of us are gone because the concepts are in fact simple. We are all responsible for our own actions as well as each other. Happy Anniversary to Catholic Workers around the world and continue the fight for peace, justice and equality.