Sunday, October 28, 2012

Hurricane Thoughts

I've been doing some thinking today. Surprised? Every now and then... Anyway... earlier this week I saw the President on TV imploring people who are able, to vote early this year. Could it be because he knows something about Hurricane Sandy's destructive powers that we don't?

I have a funny feeling about this storm. It's already caused some power outages in the East, and has another 2 1/2 days to go before it's even done there! If it messes things up too badly, it may make it difficult for people to get to the voting poles on the 6th. Jus' sayin'... So if Ohio and Wisconsin (yes, it's supposed to be big enough to effect them) don't get the kind of turn out the President is hoping for, does he get to call a "do-over"?

And what happens to the rest of the country if power outages hit NYC and the Wall St. stock exchange has to be closed down for a few days or more? That would cause a huge mess throughout the US. I kiddingly mentioned on Facebook That this storm may in fact be the "October surprise" of this election. I hope it's not. I just have a funny feeling about this storm...

10/31/12- Well the storm is now gone for the most part, but its' effects will be with us for a while. As I suspected, I got it partially right. The discussion is obviously about fixing things that got broke, but there's also talk about how this will effect the election next week. And I also heard talk about Wall Street being closed. Lower Manhattan got hit pretty hard. Let's just hope that's it for a while!

Thursday, October 25, 2012

Speaking of Heart...

My daughter Harmony attended Central Catholic High here in Portland. She graduated back in 2004. I bring that up for 2 reasons. The first is that she  realized her love for running there, on the Cross Country track team, which is something that enriches her life now. The other, is that one of her fellow alums inspired me to write this post.

His name is Hayward Demison, and he was a running back on the Central Catholic Rams  football team in 2010, 6 years after Harmony's departure. Yesterday I saw a story about him on ESPN, which I found to be both timely and inspiring. I knew by the time it was done that I needed to write about it on my blog.

In September, 2010, Hayward was a Junior in high school. His #1 football dream had always been to win a game for his team on the last play of the game. He saw that dream become reality when Central beat Canby by the score of 28 to 24, with Hayward running in the winning touchdown as time expired. Before he could celebrate the completion of his dream, he began to feel intense pain in his chest. Hayward had a major heart attack, which left him lifeless on the field of play.

Fortunately, he didn't "stay dead". He came back to life at the hospital, where they found he could either have a triple bypass, never to play football again, or he could have a risky open heart surgery that "might" allow him to play again in the future. He bravely opted for choice number 2, knowing that without the game he loved he'd have more regret than he wanted to handle. He made it through the surgery like the champion he is.

By his senior year he was back on the field, running the ball into the end zone. He played well enough to make it onto the all state team after leading his team into the playoffs with a 10-3 record! He accepted a scholarship from Southern Oregon University, and is now playing football on the college level.

The reasons I feel this story is timely and inspiring, is that just last week I wrote about the heart attack I had 19 years ago. I wrote that for the next 9 years I was waiting for the other shoe to drop, hypersensitive to any abnormal feelings in my body. Hayward's story inspires me because he was able to just move forward, whether or not he had the same fears as me. I feel it's safe to say he learned quickly what it took me 9 years to learn. Cast your fears to the side and live NOW.

Saturday, October 20, 2012

A Heart Attack At 37?

You know... with all the posts I've placed on this blog, I never have brought up my heart attack from 19 years ago. I guess it's about time to do that, as the event changed me in several ways. Some good ways, and some not so good.

I was 37 years old at the time. One Saturday afternoon I was preparing for a nap, when my left shoulder began to increasingly bother me. My wife at the time was also in the bed, reading a book before taking a nap herself. I mentioned my shoulder being sore, and jokingly said something about sweating. Soon as I was finished with my statement, I broke out in a sweat.

Fortunately, after having attended first aid training 5 or 10 times, I immediately recognized what was going on, as a heart attack. My wife told me I had gone pale, which affirmed what was happening. We walked out to the car, and off we drove to the hospital. It was a pretty scary drive; running red lights and a lot of horn beeping, but we arrived at the hospital unharmed.

I walked into the emergency room unassisted, and sat down while my wife told the people at the desk that it seemed like I was having a heart attack. Some medical professional (can't recall if it was a doctor or a nurse) did a few quick tests, which ended with giving me a nitro glycerin tablet. Almost immediately the symptoms became less intense, but only for a few minutes. They determined that I was indeed, having a heart attack, and quickly got me into an operating room.

For the next 1/2 hour or so, I was in the greatest pain of my life! First they gave me an angio-gram to  figure out what they needed to do to treat me. The whole time, I was in such pain that I was swearing like a sailor. They decided that what I needed was an angio-plaste. So I simply laid there in extreme pain while they did their thing. First thing I did when they were finished was to apologize for all the swearing I had been doing. I remember a male nurse telling me not to worry about it, that it happens all the time during this procedure.

I stayed in the hospital, stoned out on morphine for the next 3 days. Now I know why heroin is so addictive. That was some good shit! When I left the hospital I began viewing life differently than before I went in. For the next 10 years I was hyper sensitive to any kind of pain or discomfort I experienced. It was a total pain in the ass! I returned to the hospital 5 or 6 times out of fear that I was having another heart attack. Turns out, each time, it was merely a mild case of heartburn.

Then 9 years ago, those all too familiar pains returned. When I got to the hospital, they told me I needed a new coil because the old one was warn out. They replaced it, and I was good as new. At that point I made a decision to focus on living instead of dying. I became far less conscious of every little ache and pain that came my way. I still try to take care of myself, which is challenging because of chronic back problems, and I may not live forever, but at least I can enjoy myself now. THAT'S important!

Tuesday, October 09, 2012

The "One Year" Rule

I've made a decision I call the One Year Rule. It goes like this... If you write something for someone, and they haven't used it for one year, you may post it on your blog. In August 2011, I was asked to write the advise I would give to an autistic young adult who was moving from an urban (city) setting to a rural (country) setting. I did what I was asked, and to the best of my knowledge, it hasn't been used to date. So I'm posting it here. The title of my writing is...

Beyond The Obvious

For all your own good reasons, you've chosen to live in rural America, where getting your needs met may be more difficult than in the city. There's no reason to panic if you or someone who knows you is able to see "beyond the obvious." Always remember it's not you or your disability that makes life tricky, it's a world that has long neglected the idea of including EVERYONE as an equal opportunity participant in the community. Throughout history people with disabilities have been looked upon as second class citizens. Though things have slowly improved, I believe we still have a long way to go.

Of course, you'll want to be tied into some real advocacy in your new environment. There are agencies and individuals who are well paid to be there for you, but this can be very challenging. Many people who claim to be disability advocates, really are not. They may simply see you as part of their job. Look for passion! Look for people who understand the disability racket, and have experience in taking on the status quo. Just because someone holds some sort of title, doesn't mean they have YOUR best interests at heart. You don't want to learn this lesson the hard way, so always make sure you know the person(s), and their intentions going in. ASK LOTS OF QUESTIONS. If you do this thoroughly, and take this task seriously, you'll be much better off in the long run.

What's really important is fully understanding how important it is to educate people on how your disability can be their reward. Many people have an inner need to feel like they're making a positive effect in the world. These are the same people who find reward in doing things that help their neighbors. This is not about pity, it's about ALLOWING people to be as great as they can be. Refusing people the opportunity to be helpful, is no different than people refusing you the opportunity to participate. Live and let live.
It's equally important that you realize many people are fearful of stepping away from the comfort of familiarity, especially familiar individuals. When they have someone they can talk to who experienced the same situation that they did, it makes them that much more comfortable. Not being able to do so causes folks to wonder if they did or said the right thing. If they lose enough of their self-confidence, they will likely retreat, and you will lose whatever support you were getting from them. If they have someone to talk to they are more likely to feel reassured, and less likely to retreat. This is a good reason to believe there's "strength in numbers." There's nothing like a "team" effort.
I'd like to tell you about a short documentary I watched recently. The title is "Picking up Butch." It deals with a man in his 60s who has cerebral palsy. He lives in the relatively small town of Middlebury Vermont, population, 8000. Because he is physically compromised, he uses a wheel chair. His arms and hands also contribute to his personal challenges. He grew up in Middlebury, where he became a big fan of the University's football and basketball programs, as well as the college and students themselves. Getting to the games was a major difficulty for him as a child. Now, at 63 and living in a nursing home it would be even more difficult for him, except for one thing. Butch has earned the love and respect of the entire student body!
Where he lives is what he calls a "boring" place. Most of the other residents are in their 70s and 80s. What's most important to Butch is getting to the games, and hanging out with the younger students. As the title of the film suggests, each home game day, students come to the nursing home, pick him up, and take him to the games themselves. It's a tradition that has held for 50 years. Somehow the information about Butch, his physical needs, his mild fear of being in a van, and his love for what happens at the school have been passed down from class to class over the years. He is totally a crowd favorite, almost like he's on the team himself. Everybody knows Butch! It's all about the relationships he's established in the past 50 years with people who want to do good things. It's not only about sports either. He's gotten his equivalency diploma with the assistance and tutoring of a non-athlete. Butch is not any kind of mascot, he is accepted as having a seat with everyone else.
I guess the story of Butch and how he and his disability have enriched the lives of so many others is not only inspiring, but shows me that with some "beyond the obvious" thinking you can thrive, living in a rural area. Some strategies that come to mind involve getting out in the community where people begin to recognize you. Smaller communities make it easier for people to become familiar with you, and as I said earlier, familiarity brings about comfort.
Look for a college! There's usually some kind of formal adult education happening in every part of the country. Check out the fire department! It's always a good idea to let them know when you move into a new community, especially if you have physical challenges. Who knows? Maybe you'll find a new friend there. If you're comfortable, visit a church! A cafe! Wherever you can feel relaxed and be yourself. If you can, introduce yourself to people. If that's something you're unable to do, have someone with you who can, and is comfortable in doing so. My thinking is that if you are out in the sticks, you're going to need to rattle some branches in order to be noticed. Share (with those who seem interested) what sort of support you need. You don't need to ask them to provide the support, but it's fine to discuss your needs with others, if you're comfortable doing it.
Generally speaking, people who live in the country (as opposed to city) are a more open and friendly people. Once they feel comfortable with you, they'd likely give you the shirt off their back. You're also likely to be near something not usually found in the city. Farms where they have horses. Not all people like horses, but many do. Developing a personal relationship with a horse and their owner could give you many hours of satisfaction, while being therapeutic at the same time. Rural areas also are less stressful. The sounds and smells, are much more relaxing than the sounds and smells of the city. If you are a bit of a high strung individual, just being in nature can often help you feel relaxed. Your biggest issue will be in figuring out how to get around. There's often lots of miles in between places you may want to go.
Transportation in rural places can often be sparse. Developing relationships can be very helpful in this area. At the risk of sounding redundant, I'll say it again. It's all about the relationships when you live in a rural area. You really do need to depend on community! So does everyone else who lives near you. It's a different lifestyle and you, along with the people who support you, need to keep that in the forefront of your mind. Reaching out to another human is good for you AND them. It's a win/win situation.
If you can tell people your story, they'll likely take an interest in you and probably want to spend more time getting to know you on a deeper level. That is why I feel so strongly about making YOURSELF a valued part of the community. Overcoming injustice and/or intolerance can be a full time job. If you don't do it, who will?
Another option is starting something up yourself, and inviting others to participate. If you need help in accomplishing this, ask for it! Look for peers with and without disabilities, and become friends with them. You may find yourself pleasantly surprised to discover they have similar needs or wants as you. It's about being "out there", participating in your own life. You may also discover that there is grant money available to get something going. You'll never know unless you ask.
At this point I feel it's important to let you know a very important fact... You Are Not Alone!! If you're choosing to live alone, it's critical that you don't isolate at home. Many people choose to live in rural areas for several reasons. Whatever yours may be, always remember that isolating yourself leads to loneliness, self-doubt, and ultimately depression. It may be difficult doing some of the strategies I'm suggesting here, but in the long run, you'll find success if you just keep on trying. I'm aware that all I'm writing may be a bit overwhelming to you, but it's going to take some work to make things come together.
Here's another key thought for you... Disability Rights are, in fact, Civil Rights. The Americans with Disabilities Act is something you'll want to hang on to, living rurally. In fact, if you're someone who likes to read, you may want to study the ADA and the Olmstead Decision. These documents can be both useful and important in your life. There may come a time where you'll need to have some legal assistance as you work to create the life you want. I say this because you need to protect your rights. Before you resort to the ADA for solutions, it's a good idea to see if you can work things out through a civil conversation with whoever may be holding you back. They may be unaware that they're stepping on your right(s), and sometimes a chat can take care of things. If that doesn't work, you may want to seek legal advice. You might want to avoid being characterized as a malcontent or lawsuit happy by trying to deal with problems outside the courtroom if possible.
Speaking of reading, the library can be a good free resource for you. You'll find a wealth of information while making yourself visible to other folks in your community. Libraries can serve for both serious studying and recreation. They are generally quiet places, so you'll find a peaceful environment when you go there. In addition to the traditional books, libraries often lend out DVD's, have internet access, computer games, and magazines. You'll also probably come into contact with a community bulletin board, which will give you ideas of other things you can do where you live. A good library can be like a good friend!
If you're able to work, you just might make some friends while bringing some cash into your life. Find out what sort of job assistance you are eligible for. Often times you can find a "job developer" to help you find a job, and the state might pay for this service. If you have trouble doing the work at first a "job coach" may be just what you need. They teach you the job and help you work on becoming independent in the workplace. Living in the country, job opportunities will probably be somewhat limited, so be sure to set your sights realistically. You can often grow into liking a job that you dislike initially.
So now you have my ideas about what you can do to thrive in a rural area. There may even be more, but this should be a good starting point. Just remember to always use your imagination and to try to think (and see) "beyond the obvious." Become acquainted with the people around you. You'll do just fine!

Friday, October 05, 2012

Never Take "NO" for an answer!

When my autistic nephew came to live with us he was sixteen. Admittedly, we placed some serious expectations on him, and he responded well. When he reached twenty one, he decided enough was enough, and let us know he wanted to move. At first I was worried for him, having heard and /or experienced what challenges he would face, but decided he was now capable of taking care of himself with some support. I spoke with his case manager, who suggested we begin visiting some group homes she would refer us to.

These places were bad! In one setting they wanted to have him share a room with a guy who was in his 60's, blind, non-verbal, and developmentally disabled. They were serious! I couldn't believe it! Talk about the odd couple. They actually proposed a 21 year old guy, with speaking issues, who does jigsaw puzzles on the floor, would be compatible with someone who can't see, and never speaks, and is three times his age. Needless to say, we declined.

We checked out a few others before trying out a foster home. Bingo! We found a place where there were 4 other guys in their 20's, some working in the community, in a nice big home! Joseph loved the place, and within a month he decided he wanted to live there. There was one problem. His case manager said the house was set up to receive people in crisis, who would stay there until their crisis was over. I spoke with the managers who said she was right, but they would change the policy so that he could move in. Because they get a large payment from the county, the case manager had a lot of control over the house, and said she wouldn't allow them to do that. Guess her thinking was if you do this sort of thing for one person, you've set a precedent to have to do it again in the future.

Now I was angry! To keep her life/job simple, she was going to deny someone the right to live where they choose... WITH the blessing of the people who run the home! On the phone I told her Joseph would in fact, end up living there, and she hung up on me. What I did next caused my statement to come true. I collected 35 letters from people who knew my nephew, saying he should get to live where he wants. These people were from many walks of life, including family, teachers, skill trainers, past case managers, and familiar community members. I was pretty overwhelmed with some of THEIR passion to see this happen. I faxed the letters to her one at a time, with 5 minutes between each. I figured that would get her attention. After the last one was sent I called her again. This time I told her if she didn't agree, I would take the story to the media. She hung up on me again!

A few days later I got a call from the managers of the foster home, telling me Joseph could stay there! The county was changing the home to a non crisis home. And... Joseph had a new case manager!

Monday, October 01, 2012

On the "R" Word

As I've mentioned many times before, that although my life is not without struggle and challenges, I still consider myself to be wealthy! One of the main reasons behind that belief is my fabulous wife Suzanne. One of her greatest gifts is as a thinker who can write extremely well. The following is something she wrote recently, that I just HAVE TO post...

That word, the "R word" -- "retarded" -- is loaded. It's personally experienced as hurtful, demeaning and oppressive. It is tossed around carelessly everywhere, on social media, the train, in our schools, on television and in movies. And every time it happens it pushes a button that restarts those feelings of inferiority, mockery, exclusion and fear.

A whole class of people with developmental and learning disabilities and their parents (including me) and friends have explicitly asked that the rest of the community stop using this slur. The request to stop using it has been made -- politely, politically, through campaigns such as Spread the Word to End the Word Yet, its use is increasing in popular culture rather than declining, which sounds an alarm. Its constant, careless use sustains dominance and the resulting privilege at the expense of others who live a different experience, deemed by the culture as forever undesirable and invisible.

It's important for those of us working on ending injustice to be thoughtful about the power of language in shaping the cultural norms that ultimately drive social policy and behavior of individuals. We're all part of shaping of culture, and for demanding and creating a society that honors and protects all of us from oppression and exploitation -- even from eugenic targeting. During a time when we clearly see a rise in fascism happening, it's good to remember that fascists rely on each of us to signal for them which among us are most commonly excluded and held in low esteem by the general population -- and therefore, the most vulnerable to eugenic programs. Exactly what happened in Germany.

Yes, I'm all for free speech and have no desire to dictate, or have anyone else dictate what we shall be allowed to express. That would be just like the racists and fascists I oppose. But, this is much more important than being "politically correct." In fact, I believe that those of us who place a strong focus on language as one tool in shaping the course of events are commonly derided and dismissed as "politically correct" in order to keep fascism and its adherents on their historical course of oppression and elimination of the weakest among us.

My pledge: I am aware that the socialization of my white, heterosexual, educated and temporarily-abled mind and body has covered my eyes and ears with a veil that presents the world to me in a way that sustains oppression. I will read and listen intentionally to understand biases that I may not hold myself, in order to see more clearly. I seek the voice raised that is different from mine. I will strive to use my intellect and abilities with communication to promote peace and to uplift all of humanity. My purpose is to help people develop critical consciousness about themselves and the culture in which they live, a consciousness that also serves to actively confront all forms of oppression.