Solid Rock

There’s a hymm. “On Christ the solid rock I stand. All other ground is sinking sand.”
For years I’ve been racking my brains as to why people of faith feel it is still necessary to stamp out all other avenues of inquiry as though they were standing in a campfire and peripheral Sparks needed to be extinguished.
I read those lyrics As faith is solid Faith is reliable. Faith will be there for you. Specifically as regards the Christian faith, clearly Christ being a Solid Rock predates the individual Believers desire to stand on that rock. In other words Christ is firm no matter what individual believers might think or be going through at a given moment.

I read all of the ground as all other faiths or no faith. It’s religious favoritism surely.
But this is where I have to step out and differ from my colleagues in faith both Catholic and Protestant.

All other ground is sinking sand was never meant to include science. Even in ancient days. how do I know?

There was a system for planting or herding.  There was a system for caring for animals. Animal husbandry it’s called today. And as for the plants farming. Both of these are Sciences. The technology has changed but the sciences remain. Each generation prayed to their God certainly but they also learned how to care for animals and crops. This was clearly a lane of knowledge separate from that that they learned from the priests of the Temple.

There were a lot of things ancient people didn’t understand that they did a tribute to God at the time. These days they’ve been given an additional level of understanding about the way the world works and added all of that to the ancient Sciences they practice so long ago. Modern medicine chemistry, geology, physics. All of these things are gifts. I choose to believe that they are given to us by God. I choose to believe that they are not something God needs us to run away from. God is not that insecure. God is omnipotent.

But the people who claim to believe in him through the Christian framework? Oh yes they are insecure. They have been taught to fear science. I won’t say it’s false prophecy but I will say it is a teaching full of errors. God kicked us out of the garden. God recognized we would need science to till the ground. We would need science to care for animals and eventually to create a real science of Medicine to care for ourselves. Something that was not about reading entrails, but a genuine study of how the human body worked. Chemicals for medical use for use in a job both help and harm the environment. We need to know when this is happening. We need to stop being so insecure about knowledge.


Die faster
In any discipline, there are groups of   people who are subject matter experts. If a physician is competent, their patients assume that they are a subject matter expert about treating patients. The wife of former HHS secretary Tom Price is a physician. One expects a certain level of core competence from such a person. One also expects a certain amount of compassion. Both of those things fall under the Hippocratic Oath to first do no harm.  Apparently the wife of former HHS secretary Tom Price has opinions. She feels free to express those opinions everywhere. As unfortunate as this is she is protected by the First Amendment as is anyone else. She is speaking in the broader context of Cost Containment in healthcare.

The most effective and evolved way to contain those costs for any illness or condition is to emphasize preventive care,  make sure people have the opportunity to make detailed informed decisions about end-of-life care, and triage treatment so that it is directed to the least expensive setting that can handle it effectively.  That is  my opinion, my judgment that is formed by my experience of disability, in addition to that and separate from that surviving cancer, and in addition to that and separate from that many years of dealing with chronic illness and many years dealing with a spouses chronic illness.

But Mrs Price says that patients that have a certain illness are not dying quickly enough to save the system money. Her second best option for these patients is quarantine.

Normally you might expect me to say more about this appalling point of view. I can’t because I would say something I’d regret

What needs to be done

, As happens often these days a discussion in a group of other people with disabilities prompts this post.

How long is long enough to work. Is part-time enough for respect? If it’s full time what sort of work will get you respected. If you have full cognitive ability and you have degrees when will you hit a snag that disappoints the able-bodied people watching around you. If you have access to one group of people, your peers, I would imagine that when I when you get a job you are celebrated. I would also Imagine that when you hit a snag you get some support. I spent about half of my childhood and all of my adolescence and adult would of threw my forties among the able-bodied. I had perhaps two friends with a disability and one of them didn’t acknowledge it. So essentially, I felt like I was in this bowl. Doing exactly what my able-bodied peers were doing. And failing miserably at it. Other things were also a factor. There were physical problems that had not yet been diagnosed, along with some undiagnosed mental illness that  affected my ability to do my job effectively.

All the same with a few breaks, I worked from 1989 until 2009 full time in the insurance industry either Medical or Auto.

Although 85% of my friends with disabilities are online only, I cherish them. They have taught me so much. about my value, and theirs, about language, about getting through the day.  And as I learn the details of their daily lives, I’ve learned to be genuinely pleased for those who have exceeded me, those who are still out in the world doing their thing, or who are young enough to be doing it for the first time.

I’m also very grateful to meet folks who have never been able to work. The world only seems to truly value the people that work for money, but these people provide value every day to their family and friends, through their activism for the rest of us and the way they relate to other people with disabilities. 

I ask the reader to believe that I did not mean to split myself off from my classmates during my earliest elementary school days where all of us that went to school together had a disability, that this was not a purposeful segregation. Nor was it complete. I went to summer camp every year and reconnected with a lot of the folks that I went to early elementary school with that had disabilities. I felt safe there and comfortable. I cried when I left because I knew I was going from a world where all of my physical difference did not matter at all back into a world where I was made fun of because of it.

The only reason I stopped communicating with folks with disabilities outside of that summer experience is the reason any fourth grader that moves to another town might, before the era of email or social media. I had no way to visit those friends during the rest of the year. There was one in particular I did stay close to an additional year but that friendship went by the wayside too. I wish it hadn’t. I wish I had pestered my mother for people’s phone numbers and writing stationery. I wish I had looked up their addresses myself and kept writing and kept in touch. Then I wouldn’t look like such a snob. I hope if I meet more of my oldest friends again offline they will be kind to me and I will be entertaining for them. 
The short ending of this is is that I’m grateful to be back in the disability community. It’s nice to have a place where I don’t feel judged about going on disability when I was 42. Where no one is sitting around pointing a finger at me saying that I quit early.  

The Gentiles

I have some unique perspectives on disability that cause me a lot of problems.  I have recognized that they are a root cause of one particular incident that increased my predilection for staying home. It’s already a necessity because of physical problems. But after 2014 even shorter trips that were a 10 minute trip away from my house, or days when I could have sat in the sun that I did not…

Part of the reason I’m such an extreme recluse now, is because even though I realized pretty quickly back when I filed for disability, that other people with disabilities really didn’t want or need to hear my sob story because they had sob stories of their own, or because they honestly believed that they had integrated their disability enough it was nothing more than a mild inconvenience or a treasured or tolerated part of what made them great… I didn’t realize it quickly enough. In my online and offline life I lectured too much, and I lectured the wrong people. Other people with disabilities did not need to hear from me, in the same style that I communicated my story to the able bodied.

My style of communication outside in the world had always been such that I was preaching to the Gentiles. The able-bodied. The people that simply have very little clue about what it’s like to live with a disability. And I do think that that group needed to hear what I said, and what I still say about the social emotional and safety costs that people with disabilities have to bear in this society.

However, since 2014 my writing has fallen off. Simply because I don’t want to be in the business of litigating issues that my own community solved quite some time ago when I wasn’t looking.  It was not a surprise to me when I come to understand that I had to figure out a different way to discuss issues with my fellow persons with disabilities. As far as short interactions on Facebook are concerned, I have learned to do that well. I’ve learned what the younger generation seems to have well in hand, and I learned what the younger and present generation still might need to hear from me. I also learned that other folks can learn as much from my failures as my successes, which is gratifying. I certainly didn’t overuse food or money, or have a much shorter employment history then my pedigree might indicate I should,  with the intention of becoming an object lesson. If it can help anybody not to step in the trap that I stepped in, then good for them. Regarding disability too, if any of my experiences good or bad can serve as a road map for younger people coming up or older people fighting to stay out of institutions or survive within them, then I’ll gladly talk about those things, and have been talking about some of them, even since 2014.

I hope my audience as small as has been will forgive me if I stray into an area or writing style, where someone with a disability needs to raise their hand from the back of the audience and say, “Lady you’re preaching to the choir and we’ve been over this already.”

I felt kind of bad when I figured this out. I still feel bad about it now, but less so.  Figuring out how to handle the scope of my present physical impairments takes up a lot of my time, so I don’t have as much time to feel bad about offending people or missing the boat a little bit.
And regarding that previous writing style, the able-bodied still need to hear it. I’m going to try to make it into the format of a book. There is an app apparently for pulling posts off of WordPress blog and dumping them into a Word document en masse. 

So I’m going over to the old place shortly, maybe in the next week or so to Midlife and Treachery  at W P dot com, and attempting to Archive those posts into a single document. After that I will dive into the laptop and delete anything that is frivolous or dated. And keep basically three kinds of posts.  Posts about my family and my friends. Posts about my life in general, autobiographical stuff. And post about disability. I’ll leave out the politics of the day from 2005 through about 2009. It’s when I first became involved in politics but that’s been litigated by better heads than me so those don’t need to stay. Plus anything else I deem frivolous or useless or just not good enough to make the cut. And whatever I keep I will then try to edit. The autobiographical stuff I’m actually going to put a timeline together and put a year on top of each post because I do want the final edit of the book to put those in strict chronological order. I’m going to also try to edit out as much of the passive voice as I can. That’s one of my grammatical bugaboos and I recognize it.

I am sad that I spent too much time talking about things that other people had written about in a much more cogent and intellectually sound way then I did. 

I am not sad that I wrote about my life and my family and my friends and the way that disability directly impacted me, or the way that stories from a wider world about disability opened up my eyes or provoked a response, such as the public discourse of Peter Singer, or the Ashley treatment. I am not sad that merely having the blog and meeting other bloggers from the US or the UK taught me about the current state of the disability rights movement. That it taught me about the current state of the language used to discuss it, the labels we will and will not accept about ourselves. The social model of disability versus the medical model of disability. If I hadn’t started writing, and then reading other people’s blogs, I never would have learned these things as well as I have. This will take a long time to finish. I probably won’t talk about it much while I am doing it.

Thank you for reading.

From all directions

After the incident of domestic terrorism in Charlottesville this weekend I went back in my family history. I did not find anyone who directly fought the Nazis in World War II. However, my grandfather was in the Pacific Theater during World War II.

He was an engineer. He used those skills in building things for the Chinese who were fighting the Japanese at that time. I don’t know much about what. Was it civilian infrastructure that had been damaged by previous attacks? Was it defensive planning and building against future incursions by the Japanese? When he came home to the United States he made a conscious decision not to discuss his time in the war too much at all, especially not with his children. There are two other pieces though one that may be true and one that is definitely true. I’ll deal with the maybe first. Near the end of his life in a Skilled Nursing Facility my grandfather’s mind wandered. There was a time a fairly extended time that he felt he was on a Japanese troop train being taken somewhere undisclosed. He was afraid. Understandably afraid of what might be ahead of him when that train stopped. Had that actually happened to him? Had he been in a Japanese troop train? Did that train stop somewhere unspeakable? Did horrible things happen to him there?  Was he remembering an anecdote from a comrade that this happened to?  

Oh that long list of unanswered questions has a brief piece of an answer, like one brick from a wall or a broken key to a door. He had shrapnel in one leg. Doctors decided that its placement and amount meant that it was actually best to leave it in place rather than try to get it out. I remember as a kid watching my very vigorous grandfather playing tennis at 70 in the required white shorts and shirt. And there were these odd bumps and ridges in his leg that I wondered about. I asked like children do. I was told about the shrapnel, and that it  happened to my grandfather during the war. But no more than that.

What I take away from that is that my grandfather was brave enough to set his skill against a totalitarian regime that our country was fighting at the time. A totalitarian regime that did not even have the Geneva Convention as a token against how prisoners of War would be treated.

I did know people who escaped the Nazis. Parents of one of my really good high school friends had numbers on their arms. 

My friends family did not talk about them. The 1970s was the era of the miniseries. Right in my early teens, arguably the best time to educate a young person intellectually about the Holocaust a mini series with same name premiered. I watched it I learned what the Holocaust was, and what had been done. I had known nothing about it before that show. And I made the connection between my friends parents and then show and felt the horror of it a little bit in my gut. From the position of an outside observer you can only understand so much. But I understood then and I understand now that anyone who apes a regime that sanctioned that many dead among the Jews and the disabled and gypsies and gay folks, has lost the ability to call himself an American. America fought those people and people like them who were their allies. American soldiers were wounded and died so the people with this disgusting idiological bent would be tried in Nuremberg,sentenced,and the sentences carried out.

Those who speak for us that we have elected have to speak out against Nazism. Nazism stands for hatred eugenics, and dictatorship. This is inarguable.  Foreigners of any kind we’re suspect and many of them were imprisoned in concentration or labor camps. Religion was co-opted and suppressed and in the case of the Catholic Church bought off, so that the Nazis could preach their gospel of Aryan perfection.
And people like myself, persons with disabilities in Nazi Germany weren’t just euthanized, Kevorkian, wham bam farewell ma’am. No. Nothing that painless.  We were experimented on with drugs and surgeries. Reduced to lab rats instead of people. We were sterilized, even if there was no evidence that our differences were genetic. We were sterilized to show the country that it was busy perfecting itself, purging the defectives.

And this weekend Americans celebrated that search for Aryan perfection. Americans celebrated the exclusion of all else and anyone else. Americans played the victim, while simultaneously killing a young girl. 

In my judgment there is no balanced equivalency between the clashes that broke out between protesters and counter-protesters, and the senseless death that happened the following day. Physical violence at a protest is regrettable. Using a car to kill someone you disagree with ideologically is an act of domestic terrorism.

There are Nazi sympathizers in the White House now. Their last names are Bannon, Miller and Gorka. They need to go.

If America is still America they need to go.

Otherwise inside my head I’ll be looking for another name for this country. My grandfather’s generation could never have imagined this idea of gradually turning into a country that limits the press, that limits education, that despises real science that attempts to take away voting rights from some populations and even physical liberty from my tribe, the disabled if that liberty is supported by Medicaid.

For every soldier and civilian that stood against Nazism and it’s allies,  for everyone who was disappeared under that kind of ideology, we’ve got to stand against the White Nationalists and Neo Nazis who found their latest expression in Charlottesville this weekend before they go any further down that road.

A Choice

When you are homebound, when you’ve got a lot of physical issues that affect you seriously every day, and your mental health is also impacted by them I think you’ve got several choices you can make.

You can turn inward completely. Perhaps interacting only with family. Disdaining medical intervention when it is clearly necessary. Even if exercise of your faith meant a great deal to you, deciding not to do it anymore.
There are days when you are frightened. There are days when your lonesome. There are days when you’re angry.   You tend to focus all of the reason for that in the fact that you are homebound.  It’s got some validity, and you have a right to be pissed. But that’s not the whole story. Other people may share the blame. Some of your own choices may share the blame. It may just be the medical conditions themselves, which means there’s no specific person to hang your blame on. That’s unfortunate, because in my opinion it’s easier if you have someone specific or something specific  as the reason for your being limited to your home. You could spend a lot of time digging around in those corners of the beginning of your current situation. I don’t recommend it. Getting used to your paradigm as it is now will serve you better.

It’s not that I don’t get angry or pissed or juvenile about it. I just try really hard not to stay there too long.

Your second choice: Face outward as much as you still can. Interact with the outside world. Find out what other people in your life are doing. Take an active interest in it. Connect to it with your own experience where appropriate. Give advice if asked, and give it kindly. Laugh at your mishaps in the same arenas before you laugh at theirs to show that you mean well by it.

Acknowledge your grief as regards your own situation. Do it privately or publicly as you see fit. I try to do more of it privately then publicly, although I do use the internet as a jumping-off point to examine that sometimes.

If you’re going to reach out as much as you can, it is important to understand that being homebound used to limit people in a way it doesn’t today. Being homebound meant you were totally dependent on your family or other caregivers for everything.  Food,clothing, safety, what is called personal care.

Then there are the less tangible things, that people used to have to ask for solely from family or caregivers. Enjoyment, the feeling of usefulness. The idea of being connected to something else to someone else. The ability to express your faith tradition outside of a church building.

While those things do exist, sometimes there are more options. A connection to family or professionals to help you handle day-to-day needs. If you are lucky enough to be able to live independently you have a lot more jurisdiction. You decide who comes into your home, and when. You  can be in charge of your own finances under most usual circumstances. You choose your entertainment, based on budget capability not based on what someone else decides to listen to or watch.

Same with clothing you choose what to wear on any given day. Sometimes in the old days whoever put the clothes on you decided which clothes they were.

And then there is the internet. I could not imagine having the limitations that I do and being homebound without the tools of the internet.

For example I visited Florida this week, and saw how dense and vast vegetation chokes things there in the high humidity much quicker even than here in the temperate zone. Let alone in Colorado by desert which I also visited this week. I saw good online friends in the same physical spaces that I had visited doing some of the same things that I had done during my 14 years as a Colorado resident.

I have a choice. I can be pissed off that I can’t do those things anymore, or I can genuinely enjoy seeing other people do the things that I’ve done, and rejoice in the commonality.

I interacted with friends from high school and college this week as I do almost daily with social media. I pray for them, I banter with them. I hope my disputes with them come across as mild because while I may show a bold face to strangers in order to discuss what I care about, among friends I try to take a milder road.
These things are not remarkable in our society, everybody does them. What makes them remarkable for any of us that are homebound, is that as long as we have an internet connection we see much more of the world then any grandparents we knew say that ended up homebound or in a nursing home. As long as we have an internet connection we interact much more with the outside world then the last generation of homebound people before computers could. We are not invisible anymore unless we choose to be. We have a stake in the world around us. We may have issues and concerns we advocate for.

If you become homebound don’t let anybody judge your process for coming to terms with it. But there will be a time when you begin to become functional about it. You’ve sort of mentally washed up on a beach about your emotions regarding it. That’s when you take a breath and you decide which choice you make. To turn inward or face outward. I hope to meet you if you choose the second option.

Insurance flavored tax cut.

I’m going to do something very few people have written about in recent days. There are going to be people that I know that are angry about this. I cannot think about that. I need to think about the state of risk people like me are in right now. That has to be my first priority. That said, I want to reiterate something that people will not believe, nonetheless it’s true. I honor John McCain’s service to this country and the unimaginable situation he lived through as a POW. I wish John McCain a great quality of life and if at all possible full recovery from the glioblastoma he is suffering from. I wish him many good days weeks months and years with family most sincerely. I even wish him some fractious days in the Senate. I don’t wish that because I agree with his policy positions. I wish that because he enjoys it so much. And he should be allowed to come back and be in there pitching. 

I relate to him. I, as a poor person on Medicaid have something in common with him. I am a cancer survivor. I know about the rigors of chemotherapy. I know about the sinking feeling of a bad diagnosis. And I know the feeling of needing immediately to put the best face on it and fight like hell against it. I know what it looks like to look at a CAT scan and literally see all the things that were trying to eat you alive before the medicine started to counter them.

 Mr. McCain will have the best care available. It will up his odds of good quality of life. It will even up his odds of survival. I’m grateful for this and will watch with great interest how the latest technology is used to help him. 

I say this even if some of the rest of America will not have Cadillac care, so to speak, it is important, no vital, that all Americans that wake up in the morning with a diagnosis like McCain’s have a shot. They have the same right as McCain  to pursue  life, liberty and happiness.  When you get a diagnosis like this you are pursuing every single minute of those rights every single day. I said rights because I believe that to be so.

If ordinary Americans are covered by some type of insurance either government or private,  maybe they have older treatment methods that are covered but nonetheless have been shown to have some effectiveness against this type of cancer. Having worked in the insurance industry and been in and out of hospitals, that is just a fact of life even for the insured. The type of medicine or equipment that your doctor may use to treat a condition will not be the same type of medicine or equipment used in what I call Cadillac care. I don’t have a problem with that. Other people might. As long as there is some effectiveness some of the time go with it. 
Ordinary Americans have the right to take a shot against cancer or other chronic diseases or other terminal illnesses without going bankrupt. Without losing their home.

They have the right to try to fight the same battle that John McCain is fighting with some resources, with some support. 

The pursuit of happiness is taken away from them if they have to worry about where they will find the next roof over their head and the effects of cancer at the same time because they are uninsured.

The words don’t say life liberty and the pursuit of happiness unless you get sick.

The insurance flavored tax cut, which will be voted on next week, without even a CBO score to look at will take away first the Liberty and the pursuit of happiness and then the very life of ordinary Americans. In essence it is saying, they do not have a right to fight the brave fight the John McCain will be fighting if they come up with a similar diagnosis. In essence that insurance flavored tax-cut is saying that all an ordinary American will be able to do in time is get their affairs in order as quickly as possible and call as many family or friends to be around them as they pass from this world too early.

I’ve had so many people tell me things like, “I don’t want socialism,: I want capitalism in my Healthcare.” Or, “It’s a privilege not a right just like owning a car is a privilege. You have to insure it when you’re on the highway no one is forcing you to buy a car.”

My answer to the I don’t want socialism argument is this: “You want Medicare when you turn 65 don’t you?” That’s socialism. 
Cities offer massive amounts of money to sports teams in the form of tax abatements and other incentives to stay in cities and towns. That’s government-sponsored Athletics. We’ve come to the era of socialist football. But you wouldn’t want your team to move away, would you? We have Cleveland Ohio have gone through that, and it’s pretty traumatizing. So I think everyone here who is a Browns fan will put up with socialized football.

Oil and gas companies are heavily subsidized by the government through outright grants and tax breaks. They make more profit than they receive in subsidy. If they were working through pure capitalism they would be breaking even and we would have enough tax revenue to deal with a lot of things. Big agribusiness same notation the government heavily subsidizes those companies directly. And before anybody bashes me about being against helping out small family  farms, I wholeheartedly support that. Myself and the government would merely have to have an argument over what constitutes small.

From what I understand the people trying to repeal and replace the ACA are okay with sports subsidies, oil and gas subsidies, and large agribusiness subsidies. In other words, they’re fine with the government paying or allowing large amounts of money to stay in the pockets of these businesses.  

If you’re fine paying for all that stuff, then whining about paying for the Medicaid expansion and the other parts of the ACA doesn’t hold water.   

And I’ve even left out the massive military budget that the current Administration wants. See, I’m making it easier for you. Today I’m willing not to fight about that.  that is not what this post is about

I think the argument of healthcare being a privilege and not a right is false. A case can be made that it is enumerated in the phrase life liberty and the pursuit of happiness, as I’ve said before. You don’t have your best life if you don’t have Liberty to improve it and the pursuit of happiness is much more difficult when illnesses or impairments or chronic conditions are left untreated.

 One should be able to see a doctor who knows you and knows your issues on a regular basis. Going to the ER when things get critical and doing nothing else does not cut it. Maternity and child care have to be available. Sorry boys, but birth control has to be a benefit as well. If you have religious objections, don’t use it. Then find out the exact cost of the birth control line in your insurance. Donate at least that much to an organization that takes care of infants. I really don’t see how else to ease your conscience.  One should have access to and ability to pay for basic diagnostic tests, x-rays, lab work, cat scans MRI’s cancer treatment, cardiac care  Mental Health, addiction,diabetes care and dialysis.  

If you force a population to go without these things, people will die sooner than they need to. Yes everyone dies, but more people will die peacefully with their family around them, with time to Say goodbye, or in their sleep, or even after a traumatic event the family will know that they tried through intervention of good doctoring to save the life of their loved one.

We should not be a society where those without economic means can’t have that care. If this bill passes, doctors will suffer. They will be treating too many patients with too many preventable illnesses. if this bill passes hospitals will suffer. The reimbursement from programs like Medicaid and the rest of the ACA that helps to keep them afloat will in large part vanish. Smaller rural hospitals will disappear themselves thus leaving a lot of the people in those communities with an impossible transportation time frame and cost to get care. What happens when they have an emergency? Yes the ambulance might come but how long will it take for that ambulance to get that patient to the care they need? More of them will not make it.

Insurance companies, other gobblers of subsidy hate this bill. ACA subsidies have been keeping the private insurance market from getting any worse in terms of its practices.   Keeping people from getting ill and treating them when they do should not be a money-making proposition. It is what it is, so we need to work within it for now.

If people with disabilities don’t get the support they need they will be locked away, they will die sooner and their loved ones will have to go through grief they should not have to go through.

If addicts are not treated the collateral damage they do to economic productivity, to family units, to parents and children is definite but incalculable. 

This Healthcare bill addresses none of these things. 

The politicians allowing  ideological purity to obscure clear thinking about what this will do to the people that voted for them…. Don’t care. And it is tragic that they don’t. They are our public servants. And they are creating something that will destroy many of our lives and destroy us.

So in short your arguments are bull puckey.

Behind the curtain

One of the best children’s movies out there has a sequence where a con man tells his audience, pay no attention to the man behind the  curtain. It appears that locally a big Healthcare change will happen at the beginning of next July that I missed while involved in this national healthcare debate that we so much need to have. 

I was born in Ohio. My parents were in the midst of being college-educated. My mother got a master’s degree which she later parlayed into one of the earliest jobs in computer science. She taught herself two computer languages to do it. My father became an attorney. His career path was troubled and made complicated by alcoholism. He wasn’t much help. He died in 1993. 

When I was 4 years old it was discovered that I had cerebral palsy. It has been called ataxic cerebral palsy and spastic paraplegia over the years. Whatever name it has, it means my balance is bad, my typing started out as labored and is now pretty non-existent. This message is being brought to you in large part by speech recognition software. My coordination isn’t perfect and my legs find it very difficult to move as I wish them to. I had 3 surgeries on those legs when I was a child. The scars still exist.
 I went to a school for disabled children until the fourth grade. Then I was mainstreamed in the early 1970s to a local elementary school with able-bodied children. A certain subset chose to torment me until high school. Didn’t stop me from getting an education. I was a merit finalist and graduated high school with a 3.2 grade point average. I went to college in Ohio. It is a tiny campus called Hiram College and I learned critical thinking there. I learned patience and I learned writing. I learned teaching and I learned research. I learned singing and I’learned theater. After college I went to grad school and learned some more. I have a master’s in library science at the time of my graduation in 1985 I worked for full-time work in the profession and I did not end up working in my field. In 1987 I got married. That same year, I obtained an office job with Blue Cross and Blue Shield of Ohio that later became Medical Mutual of Ohio. I worked there for 10 years. In 1991 I was diagnosed with Stage 3B of Hodgkin’s lymphoma. In 1993 my husband died. My Hodgkin’s has been in remission for 26 years. I moved to Colorado and continued to excel in various parts of the insurance industry until 2004.  I went on disability.

In 2009 I qualified for Colorado Medicaid. It was there I first learned about something they called Medicaid waiver.

In 2011 I returned home. To Ohio. Medicaid has many waivers but the one that helped me in the state of Ohio lets me stay in my home even though I now require the level of care given in an assisted living or nursing home facility. It is less expensive to provide Mike here here in my home. I have other illnesses now. Inflammatory markers in my gut did make digestion extremely difficult and travel outside of my apartment a risky Dangerous Game period I am home bound. I had carpal tunnel surgery in 2004. I have asthma. I wrestle with depression comma which runs in my family. I now have lymphatic disease. I believe it to be a consolation prize leftover from having cancer of the lymph nodes in 1991. The lymphedema did not get diagnosed until 2012.

I don’t consider myself a taker. I am living on my own and trying to contribute as best I can through volunteer advocacy and working with friends with disabilities one on one to help them find housing or employment or care in their homes.

To bring this down to the issue that I referenced in the beginning of this missive. In the local state budget the program that allows me to live at home will end in July of 2018. I am checking on the legislative language period it will either end with a freeze, in other words no more persons trying to come out of nursing homes in two their own homes with some assistance will no longer be able to do so under Medicaid. Or it will be a broader cancellation and remove all services for In-Home Care under Medicaid. This leaves those of us with my level of care with a stark choice. We either choose to give up our Medicaid and get care from family members or pay for what we can and try to continue to survive on our own period period period or we take the choice that is perhaps more responsible to our future selves who might need even more care than we do now. We put ourselves in nursing home prison. We lose out on things like streaming, socialization comma running our own money and being in control of it. When to sleep is dictated to us. When to eat and what to eat is dictated to us period to a certain extent what television to watch is dictated by what negotiations we can make with roommates or staff. Recreational activities are simplistic, they must be tailored to the lowest common denominator of cognitive function. 

I have spent some time in nursing home prison. Even the best of them take away your spirit. It is not intentional meanness or neglect or abuse. Although those make the experience exponentially worse for the people who have suffered them it’s my understanding. It is simply the very fact of being in a place that you cannot leave.

All Americans deserve a shot at life liberty and pursuit of happiness the last two are nearly impossible to pursue from a nursing home. You have a line item veto on the Ohio Budget Governor Kasich. Please don’t let the deletion of Money Follows the Person stand.

A new understanding

Me: why are you so depressed today self? It’s ridiculous it’s gorgeous outside. You just saw a big happy group of your family this week and had a magnificent time. So pray tell why are you so depressed today?

Me: well it’s like this, Me. I’ve done a good read of the bill. You know the one the health-care bill that may affect as many policies and patients as 74 million people. And that bill literally targets me and people like me. But I knew that before today. Today I was very proud. I saw my tribe, full of people that move around like me via power chair. They were chanting.

” No cuts to Medicaid. Save our Liberty.”

 Just outside of Mitch McConnell’s office. They knew there might be confrontation. In fact some of them counted on it. And they weren’t afraid. They were there to make sure that all of us that ambulate like they do, as well as the broader disability community had a voice and what was being done to them. In what will be done to them over the next 10 years. In what very well will be done to me in the next 10 years. This particular billl and provisions of the Trump budget slashes not only the expansion but Medicaid as it existed even before the ACA is being cut. Medicaid takes care of disabled children in America. Medicaid takes care of disabled adults in their homes for a less money then caring for them in nursing homes. Some of those disabled adults can actually work, be taxpayers, hold down a job because of those services that Medicaid provides to them. Having a home health aide can be either the difference between living at home and managing your own life and living in an institution and being managed, or the difference between staying at home and working. 

The program also takes care of many poor and middle-class elderly. It becomes their long-term care insurance to take care of them in nursing homes. It exacts a harsh price, because all of their assets must be spent away before Medicaid can kick in. But it is a safety net. Once it does kick in they are covered in the nursing home for the care that they receive. 

I’m very sad. I’m not just scared for my own sake although that’s there. I saw so many older folks when I was in nursing home prison. They were alone. Alone in a way I don’t think people on the outside can’t even begin to grasp. Many of them had no friends and most of them had no family that came to visit. They might be wrestling with dementia or some other mental condition did made it confusing even terrifying to be where they were. And to have the basic idea of care cut from them. A hospital bed to sleep in. Competent, compassionate nursing care. Health care aides that are both cheerful and good at what they do.

Patients in nursing homes barely get that now. With the system as it exists now. Make cuts and who knows what will happen to them. 

I keep mostly to myself in this building. It is an apartment building designed for people with disabilities.  I worry about my neighbors . How will they be impacted by this law? Each person with a disability has their own way of managing their life. Their solutions will be different the magnitude of the impact of this law will be different particularly if they are on Medicaid. However employer insurance is going to be impacted,too, with the return of individual or lifetime caps and higher deductibles on the group Insurance Market. And there are major changes coming to the exchanges for those who got their care through those exchanges. So I worry about my neighbors too.

What’s going to become of us? 

ADAPT, the advocacy group that lived the protests today has a slogan. “Nothing about us without us.” They were there today.  They were part of the discussion about this bill. Once this bill is passed and becomes law, that slogan changes. That slogan becomes: All About Us without us.