So Much More To Come!

This is the story I sent to John Hopkins University Press, a synopsis of what has happened so far regarding my nephew who has autism. They asked me to contribute an article on transitioning a person with autism into adulthood for their "Narrative Inquiry in Bioethics" Journal, and this was my contribution. Hope you find it a good read!

 

I took over the parental responsibilities for my 16 year old nephew who has profound autism when my sister passed away in 2000. She'd been a single mom for most of his life. I had a good idea what my wife and I could expect for challenges, because I'd been working with people having developmental disabilities (including autism) for 17 years. The degree of some of those challenges, I wasn't quite so ready for.
 

J. had very few skills at the time he came to live with us. When he arrived in Portland from San Francisco we first found him sitting on the floor in the airport clutching a blanket and rocking, with his eyes closed. I looked at my wife, and said, "This should be interesting" -- and it certainly has been. At least for the first year and a half. That's when I began to fulfill the promise I made to my sister on her death bed. That no matter what, I'd help J. make the transition from boyhood to manhood.
 

I had a feeling that there might be some strain on the home front, since my 14 year old daughter would need to get used to having another kid in the house, but she was only there on a limited basis. She spent more time at her mom's house than at ours.I was truly surprised on how quickly Harmony caught on to what we were trying to do with J. She was an only child, but demonstrated a love and understanding well beyond her years. She was much more helpful and accepting than I could have ever hoped for.
 

J. had a vocabulary of around 30 words when he first arrived in Portland. He expressed himself by using a combination of speech, his personal system of finger signing, gestures and pulling people by the arm to show them what he wanted and/or needed. He had no real concept of showering or taking care of his grooming independently. It was as though he couldn't see himself in the mirror. When things weren't going the way he wanted them to he would vomit. His most worrisome behavior was that he had a habit of touching women's hair, whether he knew them or not. I quickly realized that this could potentially cause him severe problems in the community!
 

We had enrolled him in a Portland Public Schools high school, as we understood the need for him to be educated. Things didn't go well from the beginning. It seemed as if all the students in his classroom were spending much more time being entertained than educated. Every other day it seemed like there was a party for no good reason, while we expected reading, writing and arithmetic to be the focus -- after all, in California he'd been working on simple algebra. We decided a communication log should go back and forth between home and school, as a way to hold their feet to the fire. It only proved what we suspected. They had little intention of providing a Free Appropriate Public Education (FAPE) as required by law. Following several IEP meetings, where eventually they called in their attorney, we knew something had to give.
 

At home we were doing our best to create a safe and loving environment, where the expectation that he grow up being responsible and accountable was ever present. Within the first month, he was no longer vomiting, as the understanding was when one throws up, they are obviously sick, and need to go to bed AFTER cleaning up their mess. He didn't like the whole cause/effect of that. We taught him to shake hands ONE time with females, and leave their hair alone. That took three months for him. I worked with him every morning on his grooming process, coaching him to look at himself in the mirror, which took six months for him to do independently. Lastly, we narrowed down his communication style to talking. If he could say 30 words, he could learn to say at least 300. We still work with him on that, but he's already gone from 30 into the thousands, and stringing separate words into sentences. What we found out about my nephew/son was that he would rise to the level of expectation placed upon him!
 

We knew there was a lot for him to learn, so after 1 1/2 years wasted in PPS, we finally took the district to court in Due Process. We knew that Special Education Law would be key if we were to win, but we also knew we had enough evidence to prove that they had neglected him educationally, so we didn't bother to hire an expensive lawyer. Instead, we studied voraciously to prepare ourselves with what we knew could get very ugly. My wife and I represented him ourselves, and after three days of hostile PPS testimony, the Administrative Law Judge found on J.'s behalf. She awarded him $19,000 to be used out of the school district for educational purposes. We signed him up with Sylvan Learning Center, where for the next year and a half he learned to read, write and do math. In fact, he did so well in math that when we asked if he'd like to go further with it, he emphatically let us know he would.
 

By now J. was 20, and it was time to get a job in the real world. We looked around until we found the setting that would best suit his needs at the time. He was set up with Goodwill Industries, where J. immediately excelled. He began making some serious money on a part time basis. Almost 300 dollars every two weeks, and as his Rep. Payee, I needed to figure out how to spend his earnings, so he wouldn't lose his Medicaid eligibility. What he seemed to be lacking more than anything else at this point were people his own age to hang out with and do fun activities with. I found an agency called TRIPS, Inc. that specializes in providing vacations to folks who have various developmental disabilities. Many of these people are J.'s age, so I figured we'd give it a shot. He absolutely loved it! The key to J.'s happiness is travel! For the past nine years he's literally been all over the world, from Hawaii to Alaska to Greece to Mexico to Portugal, to ten or so states on the continent. You could say he's a world wide traveler. We use the earnings from his job (still at Goodwill) to finance his trips, which only serves to motivate him to work hard. He gets in 3 to 4 trips each year. We often tangle with Goodwill to make his employment experience more realistic, and will continue to do so. We don't believe that ANYONE should work for less than the minimum wage in America. Though J. accomplishes this, we believe it's our duty to ensure his peers also do.
 

I guess this is a good place in J.'s story to tell you about his living situation. When he moved in with us, it came with the understanding that if he wished to live elsewhere, he could do so after he turned 18. As his grandmother used to say to me as a child, "Actions speak louder than words." Just before he turned 21, his behavior at home was telling us he may want to move on in his life. He began breaking some of the rules we'd set up for him, and had successfully been following for years. When I'd call him on it, he'd look at me with expectant eyes and ask, "New house?" I guess he was weary of dealing with Sergeant Uncle David's constant riding, and when I told him we'd start looking, the bad behavior stopped. J. was obviously ready to fly the coop.
 

We began looking at group homes referred to us by his County Case Manager. That was VERY disappointing! There seemed to be little concern for finding a place that met his individual needs, and a lot of concern with filling vacant group home slots. Some of the places they sent us to were filled with old people, and others who would not challenge his growth. These homes had no one even close to his age group. We checked out 5 or 6 of these referrals and then began looking on our own. As time went by, I could tell J. was becoming frustrated. He began to withdraw inside himself, which was of great concern to my wife and I. Finally, I gave up, and moved him into what was called Temporary Foster Care. That move turned out to be one of the best I ever made for J.!
 

The house was in a nice country setting, run by a couple of men just slightly older than J.They were friendly, warm, and welcoming. The other residents were right around J.'s age. They were all very involved in Special Olympics. Within a month the managers agreed that they also believed it was the right setting for J. When I contacted J.'s case manager to tell her we didn't need to look any further, she told me he couldn't live there permanently because it's reserved for people in crisis situations. This started a fairly intense argument between myself and the County. We argued for self-directed living, the whole age thing, and the fact that this was what J. wanted. What I eventually did was collect letters from 28 different people who knew J. and his individualized needs. The majority were professionals in the developmental disability field, family and friends. With this sort of pressure -- and a promise that I would take this story to the media -- the County was put into a very uncomfortable position, and shortly after, ended the standoff. J. could stay in the home of his choosing.
 

Once he became acclimated to his new home, we enrolled him into community college, with math and computers as the focus. We hired a few experienced tutors to work with him at school, making sure he understood what was going on in the classroom. He wound up breezing through his classes, and his grades were excellent. He also began attending dances each month with his housemates, and now has a very full and exciting life. Of course, he still comes over to our house each month on a Sunday to watch sports on TV with Uncle David, while Aunt Suzanne whips up his favorite meals in the kitchen.
 

J. was diagnosed as being low-range mentally retarded, with no chance of ever speaking, or having a life beyond mere existence. But, we NEVER gave up on his potential. We've found that diagnoses are little more than labels, stuck to people so that others feel comfortable in dealing with them. J. has taught us as much about ourselves and the "system" as we have taught him. He's made his transition to adulthood like a true champ! Because the people who love him put in the time and energy to ensure he'd go as far as he could, he has. And the beautiful thing about it, is there's MUCH more to come!

Who's Kidding Who?

Did you see the President's presidentation on gun control today? He had 4 kids who had written him letters on the stage to validate his concerns. I found it to be propoganda of the worst kind, reminding me of how terrorists are always accused of using civilians as "human shields" in times of battle.

Interestingly enough, as soon as he was done I went on Facebook where I ran into the following post from a friend... "The state must declare the child to be the most precious treasure of the people. As long as the government is perceived as working for the benefit of the children, the people will happily endure almost any curtailment of liberty and almost any deprivation." - Mein Kampf. Some heavy shit, huh?

I'm also keenly aware of what is being done to children in the Middle East with the use of drones. Does the President not think these children are also children? Or are they simply out of sight and out of mind for this president and other like-minded dults?

War vs. Cancer

With medical advances in the last several years, it's reported that cancer is taking fewer and fewer victims all the time. That's a very good thing! It's taken a lot of research and billions of dollars to accomplish. My father died from cancer as well as several other people I knew.

On a weekly basis one or more of my friends on Facebook will post something about hating cancer, and the loved ones they've lost. Occasionally, I'll repost what they've posted, because they often ask you to, and I don't want to hurt their feelings by not doing so.

Last night, I watched a film titled "War Horse", which although it was pretty predictable, was still good. In watching I tapped into how much I hate war, especially the killing of innocent people. Not sure why it infuriates me so, but it absolutely does!

It's hard for me to "hate" cancer. It's a part of the nature of being human. We are prone to disease, and when we get sick, we do what we can to get well again. But what about war? It's an extremely UN-natural thing for humans to build and possess weapons that will take the lives of others. I'm 100% convinced of this. Yet, we do little to  prevent war. We do even less to end war. And I'm STILL waiting to see a post on Facebook that says; "I HATE WAR!! If you do too, please repost for 1 hour on your timeline. I know some of my friends will do this".

Children

There is so much talk about the children who were murdered in Newtown Connecticut  these days. It only seems fitting that I should write about it on my blog. After all, I also have strong feelings about children AND gun control.

It amazes me that so many Americans are outraged about these 20 kids, but have little to no compassion for children in other parts of the world. I tend to believe that once again people are consumed by the idea of American exceptionalism. So consumed, that it's caused many to become blinded to the issues that face the rest of the world.

According to UNICEF http://www.unicef.org/mdg/childmortality.html, over 29,000 kids die daily throughout the world. In part they say;

"More than 70 per cent of almost 11 million child deaths every year are attributable to six causes: diarrhoea, malaria, neonatal infection, pneumonia, preterm delivery, or lack of oxygen at birth.

These deaths occur mainly in the developing world. An Ethiopian child is 30 times more likely to die by his or her fifth birthday than a child in Western Europe. Among deaths in children, South-central Asia has the highest number of neonatal deaths, while sub-Saharan Africa has the highest rates. Two-thirds of deaths occur in just 10 countries.

And the majority are preventable. Some of the deaths occur from illnesses like measles, malaria or tetanus. Others result indirectly from marginalization, conflict and HIV/AIDS. Malnutrition and the lack of safe water and sanitation contribute to half of all these children’s deaths.
But disease isn’t inevitable, nor do children with these diseases need to die."

It's not clear how many children die from fire arms, but I'm certain that number is high too. With that information before someone, how could they possibly see what happened last week as a major tragedy? Is it because these children were mainly white Americans from upperclass neighborhoods, while the children who die from what UNICEF has identified are from mostly 3rd world countries?

I'm Too Old For Christmas (sung to the tune of "I'll Be Home for Christmas")

I’m too old for Christmas

It’s just too damned hard

Setting up the Christmas tree

And lights out in the yard

Christmas eve will find me

Laid out on the floor

I’m too old for Christmas

Can’t do it any more

 

I’m too old for Christmas

I’m not Santa Claus

All my kids are grown ups now

They come around just because

 

I’m too old for Christmas

Though I still believe

I’m too old for Christmas

So wake me New Year’s Eve.

Say It REALLY Loud!

Somehow, unbeknownst to me, I've become inacstrictably tied to  a woman named Julie Something or other on my blog. If you happen to run into her from here,( I swear I'm not a conservative republican in case you were wondering).

It's kind of like we write opposite opinions on EVERY THING! Pretty strange, if you ask me. I have some friends who are conservatives. Never fails that they have no qualms about making fools of themselves with their obvious lack of education coupled with their willingness to expose it in writing.

I actually love those people! They demonstrate all I've been talking about for the past 10 years. Thank you. You know who you are.

Almost Unanimous

There's just no denying it. Life is changing here in the United States, and across the whole world. With technology leading the way, it would be impossible to ignore the facts. Why then do we insist in hanging on to the old ways, that no longer fit? It doesn't make sense to me.

Government has traditionally made decisions on what's best for us. What a ridiculous notion in 2012. Used to be that people were too ignorant to figure out what's important to them beyond survival. We rely on a two party system to call the shots in our country. Is that really the best we can do? They make no apologies for their actions behind preserving the status quo of pleasing the rich in hopes that will trickle down to THEM. We seem to go along with them as they cut OUR throats. If that's not insanity, I don't know what is.

What if a legitimate third party would emerge to challenge their insanity? Why do we resist this idea? It's a FACT that the demographics in the US are not anything like what they used to be. The last Presidential election bares me out. Hispanics, blacks, and women primarily won the election for Obama. That's NEVER happened before! We need politicians who match up with what WE THE PEOPLE (remember that?) want to see in our country. Not these OLD stuffed shirts currently running the show. NEW BLOOD!

The bottom line is that 98% of us are unhappy (if not suffering) with the state of the nation. That being the case, it only makes sense for US to simply say "No more". WE could get this country moving in the right direction for ALL of us. Not just a chosen few.

The Hunts... Back in Southampton

Last night, during our annual Day-After-Thanksgiving-Dinner (where all the young adult relatives who live around here come to our home for a feast of leftovers) I shared a story from my youth. It was about my experience dealing with the rich people back in Southampton, NY in my early teens. The group was intent as they listened, and when I was finished, someone suggested that I should write about it. So... here goes!

In 1968 I was 12 years old. That was when I first experienced "The Hunts", set in the country side woods of my hometown. The hunts were designed to be a rich man's way of experiencing shooting pheasants for leisure, without the usual dirtiness of being a REAL hunter. Somewhere around 30 of these gentleman-hunters would show up on Saturday mornings at the crack of dawn in November and December. That is where we came in.

On the other side of town 30 or 40 kids, aged 12 to 16 (or 17), would meet in an empty grocery store parking lot, waiting for a big dirty dump truck to pick us up. When the truck arrived, we'd pile into the back, to set upon a 7 mile drive to the farm where the hunts would take place. We'd then pile out, and form a line to receive our equipment for the day. This consisted of a 3 1/2 foot long stick with a loop of rope attached to the back handle, a clapper that was fashioned from two pieces of wood attached with rope on one end, so when you swung it, it made a clapping noise,  a bib with a number on it, which we wore over our coats, and a pair of plastic goggles, which we'd hang around our necks.

When we all had our equipment, we'd wait for a 60ish year old Hungarian man named Mr. Notashe ( pronounced Not-A-Shay) to look us over and give us a pep (threat) talk regarding his hopes for a successful day for the rich hunters. Seemed like we were always waiting for him for a ridiculously long time. Anyway, when he was satisfied with what he saw, we'd climb onto a flatbed trailer, which had no side walls, and was pulled by a tactor, driven by one of the older boys. We'd drive along on these dirt roads (paths), legs hanging over the sides at around 15-20 miles per hour, our destination, the first gathering spot of 6 or 7 for the day.

It took 5 or 10 minutes to get there, and kids would start wrestling and trying to push other kids off the flat bed as we drove to the spot. Each time a kid would get pushed off, the tractor would have to stop until he made his way back, with the driver yelling out commands like "Quit fucking around!" or "I'm not making any more stops! You fall off, you walk!" It was a cross between Lord Of The Flies and The Hunger Games.

When we'd finally make it to the right spot, we'd get off the flatbed and form a long line, according to number. Each 5 man team had an overlord kid (who made 1 dollar more each day) who was in charge of keeping the others in line. After lining up, we'd begin to march forward, usually heading into the woods, with the hunters waiting on directors chairs, along with beautiful women and obediant dogs, in clearings. We'd walk along clapping to scare the pheasants out of their hiding spots, beating the undergrowth with our sticks, in case any had gone into hiding.

We's walk through briars, mud, and slimy grass for 1/2 a mile or so, hearing the screams of the birds as we got closer to the hunter's clearing. Soon, the shotgun blasts would begin. The idea was to NOT shoot toward the beaters (exclusive job tile), but that wasn't always the case. Though I was never shot, I remember other kids pulling buckshot out of their skin. When we'd hear (or feel) the buckshot getting too close kids would yell out phrases like "Keep your fucking guns up!" toward the hunters.

Once we made it to a spot where we could see the hunters in front of us, we'd lay flat on our stomachs with heads down, or seek refuge behind a tree while they blasted away as the birds flew out. After a few minutes, Mr' Notashe would blow a horn, signifying that this particular shooting spree was completed. We'd then enter the clearing and pick up the dead birds, making a pile of their bodies. If they were still alive, we were expected to pick them up by the head and wring their necks until dead. Some kids got a real charge out of this and would wring the pheasant's necks until the head came off in their hands.

After thee or four of these mini-hunts, it was time for lunch. The tractor would drive us to an old barn where the smell of boiling hot dogs and cow excretement filled the air as we approached. One of the older kids was in charge of passing out hot dogs, another in charge of giving every kid one 12 ounce bottle of Coke, and a third would pass out a single jelly donut for desert. Such a lovely repast! Then the fun would begin. We'd play some kind of tackling game in the empty (of cows, not their shit) pasture. Some kids would quietly slip away to smoke a joint or 2. Others might imbibe some form of alcoholic beverage. For that one hour of time we answered to no one but our selves.

Then it was back to work. Gathering up our equipment, we'd get it all back together, and repeat the morning's events in new clearings with new pheasants. This would go on until daylight was gone. Inevitably some kid(s) would have a difficult afternoon after the lunch break (I include myself on a few of these occasions), and by dusk we'd be back to where we got our equipment in the morning. It was a 7 or 8 hour workday where we'd make $8, and each week the cries for "an extra dollar" were widespread and loud! After waiting for Mr. Notashe (again), we'd finally get our pay. Sometimes an extra dollar, and sometimes not.

I did "The Hunts" for another few years until I was one of the older kids. It was fun and it sucked at the same time. We were well aware of the fact that we were being taken advantage of by rich people who didn't care about us in the slightest. However the comradery I experienced with the other kids in my town, and the smile it brings to my face as I write this, made it well worth it!

Thanksgiving Prayer

Dear God/Godess, I come before you in prayer and suplication. I humbly ask that the world take a new direction. That All people will finally open eyes to the truth that we are All from one family of mankind. That we ALL will realize that we ALL can be helpful and helped by our sisters and brothers. That war and killing those from our own family doesn't accomplish anything more than dividing us. That compassion and love are your only wishes for us All. Amen

Election Day Blues... or Hot Patatuh

Getting ready to go over to my local library to cast my vote. Personally, up to this election, I've voted pretty much Democrat... but not any more. This year I'm voting for Jill Stein from the Pacific Green Party, who sounds so much wiser than either of the 2 main stream candidates. Times change, as do peoples' minds.

The sad part is that one of the two candidates (who Corporate TV allowed to debate) is going to win. Both these GUYS scare me to death! They have never shown that they have the interests of the American public at heart. They do the bidding of the wealthiest people in this country, and pretty much dump the rest of us. Here's my prediction... If Obama wins, all the racists in the land will go nuts. If Romney wins, all the fake liberals will cry that he stole the election. Either way, it could get weird...

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!

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.

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!

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!

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!

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 http://www.r-word.org/. 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.

http://www.lovethatmax.com/2011/03/if-you-ask-people-to-not-use-word.html

The Real Enemy of the State

I've come to the conclusion that the biggest "enemy of the state" today is the American Legislative Exchange Council, otherwise known as ALEC. These people are truly BAD NEWS to the people of America, and ultimately the world. They are behind almost every scheme and shady deal going on in 2012. I hope that shedding some light on them will be helpful to my readers.

Since 1975, ALEC has been working overtime to create the corruption we see in state government. They claim that they are the largest “membership association of state legislators,” when the truth is that over 98% of their revenue comes from sources other than legislative dues, mainly from corporations and corporate foundations. Lying is not beyond the scope of what these people believe to be important. And do you wonder who it was that pushed through the idea that "corporations are people"? That idea is now, LAW!

They have members in the legislatures of all 50 states. In fact, in my state there are at least 19 Representatives and 3 Senators who contribute to, or benefit from ALEC's secretive ways.
The Reps. are:

Rep. Katerina Brewer (R-29), Rep. Jason Conger (R-54), Rep. Sal Esquivel (R-6), Rep. Tim Freeman (R-2), Rep. Bruce Hanna, Rep. Wally Hicks (R-3), Rep. John Huffman (R-59), Rep. Mark Johnson (R-Hood River), Rep. Bill Kennemer (R-39), Rep. Shawn Lindsay (R-30), Rep. Michael R. McLane (R-55), Rep. Dennis Richardson (R-Central Point), Rep. Sherrie Sprenger (R-Scio), Rep. Kim Thatcher (R-25), Rep. Jim Thompson (R-Dallas), Rep. Matthew Wand (R-49), Rep. Matt Wingard (R-26),

and Rep.Gene Whisnet (R53). Representative Whisnet has the (dubious) distinction of being ALEC's "Legislator of the Year" in 2011!

The Senators who cozy up to ALEC are:

Sen. Ted Ferrioli (R-John Day), Sen. Larry George (R-Sherwood), and Sen. Fred Girod (R-Stayton). Although I'm a little bit out of touch with the Oregon State Legislature these days, several of the names listed here are all too familiar to me.

Nothing wrong with that, right? AL claims to be a membership club for legislators! But....some of the CORPORATIONS who have ties with AL include Anheuser-Busch, AOL, Amazon.com, Bank of America, American Express, Bayer Corporation, and Best Buy. The list goes on ad-nauseum! Sound like a  “membership association of state legislators” to you? Me either.

Some of AL's activities include promoting the use of Atrazine (a weed killer that has caused serious health problems for the people who have come in contact with it), promoting the break up of the Wisconsin Protests last fall, protecting corporations who produce sewage sludge, which is "the growing and continuous mountain of hazardous waste produced daily by wastewater treatment plants.", and spending MILLIONS on the upcoming elections to keep Republicans in office. A-L-L  D-O-N-E  I-N  S-E-C-R-E-T!!

I could (and will) go on more about ALEC in the future, but I just wanted to show you what The People are up against right now!

 

Jury Duty

I understand that it's my duty

To sit in hard chairs on my tender booty

Waiting until my name is called

To enter a court room down the hall

Where I would listen to testimony

Guilt or innocent, real or phoney

To hear the story and see the gun

That murdered the unlucky one.

But I always feel like it's me in jail

Sentenced to the Jury Room without bail

Sitting around there, doing my time

Although I never committed a crime

Well, four strikes I'm done, they wore me out

No longer to sit in this room of doubt

Lock my ass up or better yet, shoot me

I've served my time in Jury Duty!!

It's Not an Anniversary! It's a Birthday!

Happy Birthday OWS! It took off one year ago today. All the grumblings and disgust came to a head in New York City! We (though I wasn't there, I consider myself part of the movement) took to the streets, and went from grumbling to roaring. It was beautiful!

No longer will we be satisfied to watch the raping of America by the elites! This is the country of the common man, not the few who call the shots. Change IS coming. Not the kind of wishy-washy change we've seen in the past 4 years, but REAL change, where even the least of us can be leaders, and we All have a voice!

There is little room for the optimist in this movement. By that I mean those who sit idly by, telling themselves "It will all turn out alright. Me and mine have ours." Nor is there much of a place for the pessimist who says "You'll never get anywhere. It's too late." What we have instead are people who are realists. Those willing to stand up and ask "If not now, then when?" And at the same time answer "With each of us, we can!"

We make no apologies for caring for our fellow man. We make no excuses for the words we use in this struggle. You can't evict an idea whose time has come! We will never stop until justice is served, and ALL people are treated with dignity!

So Happy Birthday Occupy Wall Street! WE ARE THE 99%!!

What the Census Says About Disability

I created and began writing on this blog over 5 years ago. I saw the need to shine more light on the challenges and discrimination faced by people with disabilities, primarily in America, but in other countries as well. It's given me a lot of purpose, and I LOVE using it when I have other ideas too.

Well, here it is, Labor Day 2012. I think today is an appropriate time for me to share some important information on disability that I found in the US Census of 2010 this morning. Perhaps you'll be able to see (as I have) how much danger lies around the corner for this underserved segment of our population, and at least begin to talk about it! Of course it has direct ties to disability, and I hope the reader (you) will gain some insight into "The Numbers".

Population Distribution...
57 million people with a disability were living in the United States in 2010. They represent 19% of the civilian noninstitutionalized population.

By age...
•8 percent of children under 15 have disabilities.
•21 percent of people 15 and older have disabilities.
•17 percent of people 21 to 64 have disabilities.
•50 percent of adults 65 and older have disabilities.

By gender... 
•Females with a disability, 20%, compared with 17% of males. (When adjusted for the aging of the population, the disability rate was 18 percent for both males and females).

Specific Disabilities...
•8 million... Number of people 15 and older who have a hearing difficulty.
•Among people 65 and older, 4 million have difficulty hearing.
•8 million... Number of people 15 and older with a vision difficulty.
•31 million... Number of people 15 and older who have difficulty walking or climbing stairs.
•4 million... Number of people who used a wheelchair to assist with mobility. This compares with 12 million people who used a cane, crutches or walker.

On the Job...
•41%... Percentage of people 21 to 64 with a disability who were employed.
•28%... Percentage of people 21 to 64 with severe disabilities who were employed. This compares with 71% of individuals with nonsevere disabilities who were employed.

Income and Poverty...
•$1,961... Median monthly earnings for people 21 to 64 with a disability, compared with $2,724 for those with no disability.
•$1,577... Median monthly earnings for people 21 to 64 with severe disabilities, while those with nonsevere disabilities had median monthly earnings of $2,402.
•$2,838... Median monthly earnings for people 21 to 64 with disabilities associated only with communication, including blindness or difficulty seeing, deafness or difficulty hearing, and difficulty having speech understood.
•29%... Percentage of people 15 to 64 with severe disabilities who were in poverty, while 18% with nonsevere disabilities were in poverty.

Program Participation...
•59%... Percentage of people 15 to 64 with severe disabilities who receive public assistance.
•33% receive social security benefits. This compares with 9% of adults 15 to 64 with nonsevere disabilities that receive Social Security benefits.
•28%... Percentage of adults with severe disabilities who receive food stamp benefits, compared with 8 percent for those with no disability.
•11%... Percentage of people 15 to 64 with severe disabilities who receive public housing assistance. This compares with 9 percent of people 65 and older with severe disabilities.

Health Insurance...
•48%... Percentage of adults 15 to 64 with severe disabilities who receive government health coverage.
•40%... Percentage of adults 15 to 64 with severe disabilities who have private health insurance coverage.
•23%... Percentage of people with severe disabilities who receive Medicare coverage.
•35%... Percentage of people 15 to 64 with severe disabilities who receive Medicaid, while 9 percent have dual coverage, receiving Medicare and Medicaid benefits.
•21%... Percentage of people 15 to 64 with severe disabilities who were uninsured, not statistically different from the 21% of those with nonsevere disabilities.