Last night I read a Young Adult novel by Cynthia Voigt entitled Izzy ,Willy -Nilly, about a 15 year old cheerleader who, after taking a ride from an intoxicated high school senior, is in a car accident and has a leg amputated as a result. The book is written in the first person and at least half of it covers her time in the hospital, then follows her home as she goes from using a walker and wheelchair to crutches, goes back to school, deals with a trio of friends who get real busy and have no time for her (one of whom dates the senior who was driving) and makes new friends.
Unfortunately the book ends just as Izzy is about to get her prosthesis, which limits discussions about living with a disability, rather than about acquiring one and dealing with the immediate aftermath.
The first person narrative is effective as Izzy copes with medical treatment, the reactions of family and friends, and gets to know herself better. I also liked the fact that she is not portrayed as a superhero. She doesn't want to go back to school, for example, and face everyone. There is a genuine portrayal of a real friendship that Izzy finds with Rosamunde, who visits her in the hospital and in a direct and compassionate way challenges Izzy so she can move on in ways her parents seem unable to do.
In one scene, Rosamunde visits Izzy's hospital room, described as stark and empty, bringing library books, a batik and vase her mother made, fun food and a game to play. Izzy looks around and says to herself the room doesn't look like hers- it's messy, but she she likes it. Her mother, who is very concerned with appearances, initially dislikes Rosamunde, but begins to understand that as a friend she sees what Izzy needs in ways her family may not.
I like the message of this book, that the changes that come with acquiring a disability are positive and it's also okay to get support for what may be tough to handle. It deals with issues such as staring, motivation, DWI, personal empowerment, empathy, friendship, and the myth that people with disabilities are asexual. It's not a new book (published in 1995) but a worthwhile - and quick - read for those either dealing with or learning about acquiring a disability.
Thursday, July 31, 2008
Microsoft's packaging turns us all into quads...
Well my wheelchair is back and I'm never giving it to anyone to be fixed again. They'll have to pry my quaddy little hands off of it the next time it needs new casters.
Great visual huh?
Anyhow today's challenge was opening the plastic box that Microsoft Word 2007 came in, apparently the same box (rubik cube puzzle except it's no fun) that Microsoft Vista comes in. So easy (NOT) that people posted pictures of how to do it. I think trying to get it open made them feel like - well I do trying to open things.
But I'll share the pictures. Eventually you're gonna need to deal.
And who knows? Maybe someone out there doing handicap awareness might want to use the box as a sensitivity training item for dexterity issues....bwa haha....
Great visual huh?
Anyhow today's challenge was opening the plastic box that Microsoft Word 2007 came in, apparently the same box (rubik cube puzzle except it's no fun) that Microsoft Vista comes in. So easy (NOT) that people posted pictures of how to do it. I think trying to get it open made them feel like - well I do trying to open things.
But I'll share the pictures. Eventually you're gonna need to deal.
And who knows? Maybe someone out there doing handicap awareness might want to use the box as a sensitivity training item for dexterity issues....bwa haha....
Wednesday, July 30, 2008
A broken toilet, a wheelchair repair
Tomorrow I'm supposed to get my manual chair back. It's been in the shop for over a month because it needed a new caster.
I know. That's ridiculous. But it's the state of service for wheelchair repairs if you can't do it yourself. I lack the dexterity, although not the knowledge and now that I'm not traveling with wheelchair tennis buddies any more, finding folks to help just isn't happening. So into the shop it goes. Getting the parts took most of the time, although Meredith told them that there is a thing called overnight shipping. At one point I wondered if the parts were being carried by someone in a wheelchair, pushing across country.
I called, she called. Like we have time for this. I'm paying cash for the parts, so there's no Medicare holdup, which could have turned it into a four month wait apparently.
Meanwhile my toilet broke. A plumber was called who will be here today or tomorrow. I couldn't help but notice the many service options for my broken toilet.
I could actually manage better with a broken toilet than without my manual chair. That might surprise some folks, but it's true.
Of course no one would want to manage with a broken toilet for five or six weeks. So why does it continue to be acceptable that long waits for wheelchair repairs are common?
Where my mom lives, people with disabilities and elderly people using wheelchairs commonly wait months for repairs. Months.
When I get the manual wheelchair back , my ever recurring shoulder injuries, bilateral again, may heal. You see, because I didn't have my manual chair, I've been using equipment that doesn't fit or just crawling around to do things, like plug in my power chair. One day I even had to drop a scooter onto the ground to get into a medical appointment when I couldn't get help. Things that couldn't wait five or six weeks.
Ironically, I ponied out big bucks to buy a power chair so I could "protect" my shoulders. I retired from wheelchair tennis.
And here I sit in pain.
But my toilet will be fixed, probably tomorrow. When I get my wheelchair back.
I know. That's ridiculous. But it's the state of service for wheelchair repairs if you can't do it yourself. I lack the dexterity, although not the knowledge and now that I'm not traveling with wheelchair tennis buddies any more, finding folks to help just isn't happening. So into the shop it goes. Getting the parts took most of the time, although Meredith told them that there is a thing called overnight shipping. At one point I wondered if the parts were being carried by someone in a wheelchair, pushing across country.
I called, she called. Like we have time for this. I'm paying cash for the parts, so there's no Medicare holdup, which could have turned it into a four month wait apparently.
Meanwhile my toilet broke. A plumber was called who will be here today or tomorrow. I couldn't help but notice the many service options for my broken toilet.
I could actually manage better with a broken toilet than without my manual chair. That might surprise some folks, but it's true.
Of course no one would want to manage with a broken toilet for five or six weeks. So why does it continue to be acceptable that long waits for wheelchair repairs are common?
Where my mom lives, people with disabilities and elderly people using wheelchairs commonly wait months for repairs. Months.
When I get the manual wheelchair back , my ever recurring shoulder injuries, bilateral again, may heal. You see, because I didn't have my manual chair, I've been using equipment that doesn't fit or just crawling around to do things, like plug in my power chair. One day I even had to drop a scooter onto the ground to get into a medical appointment when I couldn't get help. Things that couldn't wait five or six weeks.
Ironically, I ponied out big bucks to buy a power chair so I could "protect" my shoulders. I retired from wheelchair tennis.
And here I sit in pain.
But my toilet will be fixed, probably tomorrow. When I get my wheelchair back.
Tuesday, July 29, 2008
Wheelchair chinups....
...done by a guy in a wheelchair who straps himself in - and brings the wheelchair with him to the bar!
How are you?
The little girl was about five years old, playing in front of her house, jumping, hopping, skipping. I was about six houses away, approaching her in my power chair as I came down the block.
She stopped suddenly, planted her feet and unabashedly stared as I got closer, looking over my arms, my legs.
I know from doing handicap awareness with elementary school kids that they usually ask two questions or a variation on them:
1. Are you in pain? (or does it hurt?)
2. How do you do things? ( how do you eat? how do you get into/out of bed? etc.)
And when you think about it, it boils down to are you okay? Whenever I see a young child stare, I tend to think some of their curiosity is about these questions, which usually go unasked- and unanswered.
"Hi, how are you?" I asked.
"Okay."
"I'm okay too," I said, smiling. I spun the wheelchair in a 360 degree turn.
"Wow, that looks like fun," she said.
As I continued on, she waved, smiling. When I looked back from halfway down the block, she was playing.
A few blocks later, I saw a family moving into a house. Two teens were out by the car, carrying boxes in. The younger girl was about 15 and she stared as I approached, as unabashedly as the five year old. Her older brother, about 18, smiled and said "Hello, how are you?"
"Good," I said. The 15 year old turned away and looked into the car as I spoke to her brother, welcoming them to the neighborhood before I moved on.
A few minutes later I heard him say to her "That was rude, turning your back."
"I couldn't stand that if it was me," she said.
Those unanswered - and unasked questions.
She stopped suddenly, planted her feet and unabashedly stared as I got closer, looking over my arms, my legs.
I know from doing handicap awareness with elementary school kids that they usually ask two questions or a variation on them:
1. Are you in pain? (or does it hurt?)
2. How do you do things? ( how do you eat? how do you get into/out of bed? etc.)
And when you think about it, it boils down to are you okay? Whenever I see a young child stare, I tend to think some of their curiosity is about these questions, which usually go unasked- and unanswered.
"Hi, how are you?" I asked.
"Okay."
"I'm okay too," I said, smiling. I spun the wheelchair in a 360 degree turn.
"Wow, that looks like fun," she said.
As I continued on, she waved, smiling. When I looked back from halfway down the block, she was playing.
A few blocks later, I saw a family moving into a house. Two teens were out by the car, carrying boxes in. The younger girl was about 15 and she stared as I approached, as unabashedly as the five year old. Her older brother, about 18, smiled and said "Hello, how are you?"
"Good," I said. The 15 year old turned away and looked into the car as I spoke to her brother, welcoming them to the neighborhood before I moved on.
A few minutes later I heard him say to her "That was rude, turning your back."
"I couldn't stand that if it was me," she said.
Those unanswered - and unasked questions.
Sunday, July 27, 2008
Growing health advocacy business benefit - corporations
New businesses are springing up to help patients negotiate changes in insurance and Medicare laws, but their for profit nature tends to cater to those who fall into a certain economic class.
It is estimated that the health advocacy area will be a booming business opportunity over the upcoming years as patients face more denials and billing issues that require a greater level of knowledge and resources. At the present time, corporations are their biggest customers.
Indeed, the largest customers of health advocacy services are companies, not individuals. "The employers are interested because it means their employees are not on the phone taking care of doctor's visits" during work hours, Fischer said.
...
$10,000 a year PinnacleCare is mentioned as a for profit health advocacy company that is used by some wealthy individuals.
The Baltimore-based company is essentially a club for millionaires and billionaires that puts nurses and social workers in touch with members. Not only will they help members find top-level care, they will get them moved to the head of the line. PinnacleCare advisers will even meet the patient at a doctor's office or hospital. via USAToday.com
Of course the irony- and even ethical dilemna- of this is that those who cannot afford this service are then pushed back in line even further, making it more difficult to access good care.
There is a nonprofit group mentioned in the article.
The Patient Advocate Foundation provides free help to people with chronic, debilitating and life-threatening conditions. Founded in 1996, the Virginia-based organization has 113 employees and an annual budget of about $8.5 million. It handled nearly 45,000 cases in 2007 — most of them cancer patients. via USAToday.com
The article ends by noting that it would be helpful if more pro bono services were offered to those in need of help. You can locate the Patient Advocate Foundation at this link.
It is estimated that the health advocacy area will be a booming business opportunity over the upcoming years as patients face more denials and billing issues that require a greater level of knowledge and resources. At the present time, corporations are their biggest customers.
Indeed, the largest customers of health advocacy services are companies, not individuals. "The employers are interested because it means their employees are not on the phone taking care of doctor's visits" during work hours, Fischer said.
...
Health Advocate claims to be the largest. Founded in 2001, it now has more than 3,500 companies, unions and other organizations as clients, including Johnson & Johnson, American Express and The Home Depot Inc.
Altogether, about 2.6 million employees, or members, are signed up with Health Advocate. But the number who can use it is actually higher: Members can share the call-in number with spouses, children, parents and parents-in-law — including elderly kin who need help picking a Medicare prescription drug plan, finding a nursing home or arranging transportation for health care. With all relatives added in, Health Advocate's membership as roughly 12 million, Fischer said.
via USAToday.com$10,000 a year PinnacleCare is mentioned as a for profit health advocacy company that is used by some wealthy individuals.
The Baltimore-based company is essentially a club for millionaires and billionaires that puts nurses and social workers in touch with members. Not only will they help members find top-level care, they will get them moved to the head of the line. PinnacleCare advisers will even meet the patient at a doctor's office or hospital. via USAToday.com
Of course the irony- and even ethical dilemna- of this is that those who cannot afford this service are then pushed back in line even further, making it more difficult to access good care.
There is a nonprofit group mentioned in the article.
The Patient Advocate Foundation provides free help to people with chronic, debilitating and life-threatening conditions. Founded in 1996, the Virginia-based organization has 113 employees and an annual budget of about $8.5 million. It handled nearly 45,000 cases in 2007 — most of them cancer patients. via USAToday.com
The article ends by noting that it would be helpful if more pro bono services were offered to those in need of help. You can locate the Patient Advocate Foundation at this link.
Amphicars!
From Grand Lake St Mary's in Celina Ohio - amphicars from all over the world. Enjoy watching some of these classic cars that can travel by land or in the water in this post that's just for my readers who are car lovers.
A family's fictional journey
Sometimes a first novel comes along that's really excellent- and also deals with a subject that is worth reading about.
Halfway House by Katharine Noel fits the description. Her book is about Angie, a competitive swimmer in high school who suddenly begins to show symptoms of bipolar disorder and has a psychotic break. After being hospitalized , Angie is sent to a farm/treatment hospital for three months and then returns home to restart her senior year of high school.
Not only does the book follow her family and Angie through that difficult time, but also through the years afterward - medication changes, halfway houses, an attempt at going to college and working. The book also explores the effect on the family's relationships - how Angie's diagnosis changes each member, how relationships between Angie and each member change.
Noel writes with ease, but more importantly she doesn't turn the book into a melodrama. Angie's parents' relationship is multifaceted and not all about their daughter. They are given a history as characters and although it would be much easier to write this book as all about Angie, that's not done. Each family member is portrayed individually, so their relationship to Angie and feelings are more credible.
Overall, I'd say this is a very powerful book dealing with a subject that's often handled poorly in fiction.
Halfway House by Katharine Noel fits the description. Her book is about Angie, a competitive swimmer in high school who suddenly begins to show symptoms of bipolar disorder and has a psychotic break. After being hospitalized , Angie is sent to a farm/treatment hospital for three months and then returns home to restart her senior year of high school.
Not only does the book follow her family and Angie through that difficult time, but also through the years afterward - medication changes, halfway houses, an attempt at going to college and working. The book also explores the effect on the family's relationships - how Angie's diagnosis changes each member, how relationships between Angie and each member change.
Noel writes with ease, but more importantly she doesn't turn the book into a melodrama. Angie's parents' relationship is multifaceted and not all about their daughter. They are given a history as characters and although it would be much easier to write this book as all about Angie, that's not done. Each family member is portrayed individually, so their relationship to Angie and feelings are more credible.
Overall, I'd say this is a very powerful book dealing with a subject that's often handled poorly in fiction.
Saturday, July 26, 2008
My book
Meredith wrote about receiving the first copies of her new book, The Word Made Fresh, over at her blog.
I know with what great prayer and care Meredith wrote The Word Made Fresh. As an author, she stayed true to the goal of it being a spirit-driven book about the ministry- yes, the ministry- of church communications. A ministry that should be done with great care and prayer.
Meredith does things with prayer and care, whether she's writing or being my PA.
She dedicated the book to me. Imagine that. And having this book dedicated to me is a gift I will always treasure.
The only awkward thing is I've started referring to it as my book. As such I'm interested in the marketing strategy, the book tour, etc.
Meredith picked up on this when she brought over a copy the other day and I asked her where she put my book.
Your book? she asked, chuckling.
Yeah, I said. My book.
What did she write in the dedication? How humble I am.
What? You don't believe me? You can get a copy here and check it out.
I know with what great prayer and care Meredith wrote The Word Made Fresh. As an author, she stayed true to the goal of it being a spirit-driven book about the ministry- yes, the ministry- of church communications. A ministry that should be done with great care and prayer.
Meredith does things with prayer and care, whether she's writing or being my PA.
She dedicated the book to me. Imagine that. And having this book dedicated to me is a gift I will always treasure.
The only awkward thing is I've started referring to it as my book. As such I'm interested in the marketing strategy, the book tour, etc.
Meredith picked up on this when she brought over a copy the other day and I asked her where she put my book.
Your book? she asked, chuckling.
Yeah, I said. My book.
What did she write in the dedication? How humble I am.
What? You don't believe me? You can get a copy here and check it out.
Shooting at lawnmowers
And we wonder why Americans look bad overseas.
BBC is running this article about an American guy who allegedly shot his lawnmower when he couldn't get it to run, noting that he appeared to be inebriated at the time.
I see a lot of folks doing the equivalent of shooting at lawnmowers lately. And it seems to result from an inability or unwillingness to think outside the box to fix problems.
We might all agree, for example, that the grass needs to be cut. One broken lawnmower shouldn't prevent that. Nor does shooting at the lawnmower do any good.
If only we could think outside the box. Get the mower fixed. Hire a kid to cut the lawn in the meantime. Borrow a neighbor's lawnmower. So many possibilities.
Shooting the lawnmower is just downright dumb, isn't it?
Yet we do this with social issues. We talk about eliminating social programs when a few things go wrong. We make cuts in Medicare that hurt those who are most vulnerable when we discover that there are people leeching off of the system.
And, sadly, as a society we see one broken lawnmower as the culprit when the real problem is that we failed to plan, failed to think outside the box and failed to act before the situation was out of hand. Of course, it's not as obvious as some guy standing in his yard shooting at his lawnmower. Instead we legislate, moderate, procrastinate - and debate. We pass amendments and pass judgment.
But in the end, if we don't look at the whole picture, if we're not willing to accept that it's going to take resourcefulness and time to fix longstanding problems, all of these things don't matter.
The grass still won't get cut.
"Congress estimates that Medicare loses $70 billion per year to fraud. CMS says $700 million in DME payments are improper, due to billing errors or fraud. So less than one percent of Medicare fraud can be attributed to DME. While our industry has zero tolerance for fraud, the $70 billion number begs the question: Where is the more than $69 billion in non-DME fraud occurring? You have to wonder whether the focus on DME is designed to shift attention away from the failure of CMS to use its existing authority and tools at its disposal to ferret out and stop fraud against Medicare."
Tyler Wilson, CEO of AA Homecare
BBC is running this article about an American guy who allegedly shot his lawnmower when he couldn't get it to run, noting that he appeared to be inebriated at the time.
I see a lot of folks doing the equivalent of shooting at lawnmowers lately. And it seems to result from an inability or unwillingness to think outside the box to fix problems.
We might all agree, for example, that the grass needs to be cut. One broken lawnmower shouldn't prevent that. Nor does shooting at the lawnmower do any good.
If only we could think outside the box. Get the mower fixed. Hire a kid to cut the lawn in the meantime. Borrow a neighbor's lawnmower. So many possibilities.
Shooting the lawnmower is just downright dumb, isn't it?
Yet we do this with social issues. We talk about eliminating social programs when a few things go wrong. We make cuts in Medicare that hurt those who are most vulnerable when we discover that there are people leeching off of the system.
And, sadly, as a society we see one broken lawnmower as the culprit when the real problem is that we failed to plan, failed to think outside the box and failed to act before the situation was out of hand. Of course, it's not as obvious as some guy standing in his yard shooting at his lawnmower. Instead we legislate, moderate, procrastinate - and debate. We pass amendments and pass judgment.
But in the end, if we don't look at the whole picture, if we're not willing to accept that it's going to take resourcefulness and time to fix longstanding problems, all of these things don't matter.
The grass still won't get cut.
"Congress estimates that Medicare loses $70 billion per year to fraud. CMS says $700 million in DME payments are improper, due to billing errors or fraud. So less than one percent of Medicare fraud can be attributed to DME. While our industry has zero tolerance for fraud, the $70 billion number begs the question: Where is the more than $69 billion in non-DME fraud occurring? You have to wonder whether the focus on DME is designed to shift attention away from the failure of CMS to use its existing authority and tools at its disposal to ferret out and stop fraud against Medicare."
Tyler Wilson, CEO of AA Homecare
Thursday, July 24, 2008
Okey dokey
Not really. I'm actually in pain from using the wrong piece of equipment so I'm going to take a blogging break. Be back soon as I can. Take care.
Wednesday, July 23, 2008
Disability Carnival 42 is up over at Pitt Rehab
Greg chose a summertime theme, which resulted in a lot of great posts ready for the reading over there.
Everything from aquatic therapy to curbside consultations, from transferring to traveling, from enjoying the beach to dealing with stares. (Thomas wrote about his Royal Carribean cruise and how accessibility issues went, which makes for not only interesting reading but great information. He writes:
Beginning June 5, 2008 the Explorer of the Sea set sail for Bermuda, St. Martin, St. Thomas and San Juan Puerto Rico. This was my 5th cruise, 4th of Royal Caribbean and the first since losing my sight.
Go on over to Pitt Rehab and check out the posts!
Everything from aquatic therapy to curbside consultations, from transferring to traveling, from enjoying the beach to dealing with stares. (Thomas wrote about his Royal Carribean cruise and how accessibility issues went, which makes for not only interesting reading but great information. He writes:
Beginning June 5, 2008 the Explorer of the Sea set sail for Bermuda, St. Martin, St. Thomas and San Juan Puerto Rico. This was my 5th cruise, 4th of Royal Caribbean and the first since losing my sight.
Go on over to Pitt Rehab and check out the posts!
Those rascals....
This video really made me chuckle - the husband as the "disembodied voice" narrates as his wife, who has MS, tours Army exhibits on a Rascal scooter.
Multiple Sclerosis / Rascal Scooter
Multiple Sclerosis / Rascal Scooter
Mobility and technology
When I read about this Greek Orthodox pilgrimage site that now allows those who cannot go to email a prayer that will be read to the icon of the Virgin Mary, I was struck by how technology cannot be left out of a discussion of mobility.
I write about mobility a lot, because I've met so many people who experience it differently because of living with a disability. Perhaps they need equipment or accessible transportation or an aide to travel with them. Mobility can be extremely restricted for many of our disabled citizens who cannot obtain these products or services.
The sad thing is that for many of those who fall into that category, access to technology is also restricted. Owning a computer with online access is not a given, although it can cut across mobility restrictions. It also can be quite a bit cheaper, albeit not the same, as other services and products.
With the advent of video cameras built into some computers and the widespread use of Skype, there are free ways to communicate face to face with others. Email, IM's and chat rooms are also free and easily available. For an individual who isn't able to travel and for those who are homebound, the use of these technologies can make a difference in quality of life and afford a level of mobility that wasn't available before, at least in a "cyber" way.
Although I'd never encourage actual mobility to be substituted by the use of a computer, it is an alternative in the event when other forms of mobility can't be accessed. It is, however, not yet available to many who struggle with issues of poverty as well as disability.
I write about mobility a lot, because I've met so many people who experience it differently because of living with a disability. Perhaps they need equipment or accessible transportation or an aide to travel with them. Mobility can be extremely restricted for many of our disabled citizens who cannot obtain these products or services.
The sad thing is that for many of those who fall into that category, access to technology is also restricted. Owning a computer with online access is not a given, although it can cut across mobility restrictions. It also can be quite a bit cheaper, albeit not the same, as other services and products.
With the advent of video cameras built into some computers and the widespread use of Skype, there are free ways to communicate face to face with others. Email, IM's and chat rooms are also free and easily available. For an individual who isn't able to travel and for those who are homebound, the use of these technologies can make a difference in quality of life and afford a level of mobility that wasn't available before, at least in a "cyber" way.
Although I'd never encourage actual mobility to be substituted by the use of a computer, it is an alternative in the event when other forms of mobility can't be accessed. It is, however, not yet available to many who struggle with issues of poverty as well as disability.
Tuesday, July 22, 2008
Summer Fun
I've been fortunate, having had many memorable summer experiences I could write about for this disability blog carnival. There were my summers as a camp counselor in the Poconos, which I remember fondly. I also played competitive wheelchair tennis for over a decade, traveling to many places such as Hilton Head, Virginia Beach, San Diego and even to Flushing NY, the site of the US Open. I rolled onto the same tennis courts played on by Sampras, Agassi and the Williams sisters. Pretty lucky quad, huh?
But my most memorable summer experience was attending Sports for Health, part of the northeast Ski for Light program held in the Poconos. It's a program run by volunteers for mobility and visually impaired participants (called MIPS and VIPS). In the winter, there's cross country skiing and in the summer, there are picnics, kayaking, biking, hiking, swimming, playing games, and even some camping for those who prefer to sleep outside the lodge.
What's so special about the experience is the people. There's an atmosphere that supports trying new activities and encouraging people to have a good time while doing it. The late night chats, the hilarious talent shows that make you cry and laugh, and the family style meals give plenty of opportunity to get to know everyone else who's there.
As the only MIP who attended that summer, a lot of VIPS were curious about my wheelchair. A few tried it out and wanted to race in it, but because many of the activities were outside on grass and my manual chair wasn't so good on it, people kept checking to make sure I was getting around okay. This led to a pretty funny situation.
On the day I tried kayaking, I transferred at the dock into a kayak with the help of staff, leaving my wheelchair alone on the sand. We paddled out halfway onto the lake when I saw a commotion around my wheelchair. VIPS were practically jumping up and down around my wheelchair and I heard them calling my name.
"What's up?" I asked the woman with me in the kayak. She shrugged.
Upon our return, I discovered that a VIP had walked by my wheelchair, assuming I was in it, and started a conversation. When I didn't answer, the person leaned down to touch my shoulder and found that my chair was empty and began yelling to everyone that I was missing. Luckily someone explained that I was out on a kayak.
But when I got back to shore, I was emphatically told by a few folks not to leave my chair again without letting them know.
My heart still warms when I think of that trip. I hope everyone going this year has as much fun as I did.
But my most memorable summer experience was attending Sports for Health, part of the northeast Ski for Light program held in the Poconos. It's a program run by volunteers for mobility and visually impaired participants (called MIPS and VIPS). In the winter, there's cross country skiing and in the summer, there are picnics, kayaking, biking, hiking, swimming, playing games, and even some camping for those who prefer to sleep outside the lodge.
What's so special about the experience is the people. There's an atmosphere that supports trying new activities and encouraging people to have a good time while doing it. The late night chats, the hilarious talent shows that make you cry and laugh, and the family style meals give plenty of opportunity to get to know everyone else who's there.
As the only MIP who attended that summer, a lot of VIPS were curious about my wheelchair. A few tried it out and wanted to race in it, but because many of the activities were outside on grass and my manual chair wasn't so good on it, people kept checking to make sure I was getting around okay. This led to a pretty funny situation.
On the day I tried kayaking, I transferred at the dock into a kayak with the help of staff, leaving my wheelchair alone on the sand. We paddled out halfway onto the lake when I saw a commotion around my wheelchair. VIPS were practically jumping up and down around my wheelchair and I heard them calling my name.
"What's up?" I asked the woman with me in the kayak. She shrugged.
Upon our return, I discovered that a VIP had walked by my wheelchair, assuming I was in it, and started a conversation. When I didn't answer, the person leaned down to touch my shoulder and found that my chair was empty and began yelling to everyone that I was missing. Luckily someone explained that I was out on a kayak.
But when I got back to shore, I was emphatically told by a few folks not to leave my chair again without letting them know.
My heart still warms when I think of that trip. I hope everyone going this year has as much fun as I did.
Savage rant on autism
Parents of children with autism, among others, are calling for the firing of conservative radio show host Michael Savage after his rant about autism on air. An online petition has been started. You can see a video about his remarks here. He has defended what he said on at least one TV show shown in the video, saying his comments needed to be considered in context.
In an article discussing the remarks that aired last Wednesday on the show Savage Nation, it states:
In remarks he later characterized as directed at the large number of diagnosed children who he feels are not truly autistic, he called autism "a fraud, a racket. ... I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. ... What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. ... Act like a man. Don't sit there crying and screaming, idiot.'"
Several dozen parents and protesters stood before WOR's office on lower Broadway in Manhattan, holding signs like "Fire Savage." John Gilmore, executive director of Hicksville-based Autism United, a coalition of advocacy and service groups, said, "If someone wanted to pick the most vulnerable group in the country, you'd be hard pressed to find one easier than autistic children."
via www.newsday.com
The news conference and protest was held yesterday.
A statement released by the Autism Society of American states: "We are dismayed that these grossly inaccurate remarks would be aired in any platform, much less on a nationally syndicated show. We will continue to work with families, people with autism and the broader public to raise awareness of autism spectrum disorders."
Over at P.L.A., a parent describes the journey he has taken with his son with autism and decries this kind of mocking of autism as that of a ten year old bully - a post well worth reading- and interesting since it's dated in May 2003, indicating that Savage has done this before.
UPDATE: Response by Rep. Mike Doyle of PA
In an article discussing the remarks that aired last Wednesday on the show Savage Nation, it states:
In remarks he later characterized as directed at the large number of diagnosed children who he feels are not truly autistic, he called autism "a fraud, a racket. ... I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. ... What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. ... Act like a man. Don't sit there crying and screaming, idiot.'"
Several dozen parents and protesters stood before WOR's office on lower Broadway in Manhattan, holding signs like "Fire Savage." John Gilmore, executive director of Hicksville-based Autism United, a coalition of advocacy and service groups, said, "If someone wanted to pick the most vulnerable group in the country, you'd be hard pressed to find one easier than autistic children."
via www.newsday.com
The news conference and protest was held yesterday.
A statement released by the Autism Society of American states: "We are dismayed that these grossly inaccurate remarks would be aired in any platform, much less on a nationally syndicated show. We will continue to work with families, people with autism and the broader public to raise awareness of autism spectrum disorders."
Over at P.L.A., a parent describes the journey he has taken with his son with autism and decries this kind of mocking of autism as that of a ten year old bully - a post well worth reading- and interesting since it's dated in May 2003, indicating that Savage has done this before.
UPDATE: Response by Rep. Mike Doyle of PA
Monday, July 21, 2008
A few thoughts on Duma Key
I'm reading Duma Key by Stephen King, a book that is really open for a lot of discussion about a character with a disability. Edgar Freemantle has an unpleasant accident involving a crane and loses an arm. (He suffers other injuries, such as a brain injury and hip problem.) He also separates from his wife, and goes to see a psychologist who suggests he try a hobby. Then he decides to move to Florida.
Edgar starts to paint. If this was not a Stephen King novel, the book would take a different turn at this point. Maybe meet someone new, etc. But I knew that the itching in his stump, the fact that he had phantom sensations of the supernatural kind, was going to lead to an interesting plot. And so it has.
It is a book about those who have had near death experiences, which have given them psychic powers, according to the NY Times. Maybe so, but there are many other subjects of interest in Duma Key.
What's so interesting in this book is that it is one of the first I've read where disability is treated as an integral part of life and relationships and those around pwd are shown as very human in their reaction to it. Edgar's wife is first portrayed as a villain, but this changes as he becomes less angry and looks at how he acted after his accident toward her. There is an elderly character with Alzhemer's who has a caregiver named Wireman who also has a disability - and the give and take of that relationship is shown, caring for each other at different times. The wounded helper theme is all over this book. It's a grand equalizer for those who see disabled folks as always in need of help. So little is written about people with disabilities and their relationships to each other, although in independent movies I'm seeing more films on this theme. What bothers me sometimes is how it's treated as a "quirky" subject. (In The Guatemalan Handshake, a film I watched last week, a boy in a wheelchair's few lines were about snot and poop and not much more. The exaggerated nature of some of these indie characters is along the lines of Napoleon Bonaparte.)
In any event, back to the wounded healer theme. Edgar's paintings turn out to have the power to heal, to change the course of events turning him into a very powerful artist. Is it possible to read into this book that King is talking about how his own art feels more powerful after his accident? Obviously I did do that, but could be wrong. One thing I do know is that it's exciting to read about a character with a disability who comes across as an agent of change, not a character to be acted upon.
Edgar starts to paint. If this was not a Stephen King novel, the book would take a different turn at this point. Maybe meet someone new, etc. But I knew that the itching in his stump, the fact that he had phantom sensations of the supernatural kind, was going to lead to an interesting plot. And so it has.
It is a book about those who have had near death experiences, which have given them psychic powers, according to the NY Times. Maybe so, but there are many other subjects of interest in Duma Key.
What's so interesting in this book is that it is one of the first I've read where disability is treated as an integral part of life and relationships and those around pwd are shown as very human in their reaction to it. Edgar's wife is first portrayed as a villain, but this changes as he becomes less angry and looks at how he acted after his accident toward her. There is an elderly character with Alzhemer's who has a caregiver named Wireman who also has a disability - and the give and take of that relationship is shown, caring for each other at different times. The wounded helper theme is all over this book. It's a grand equalizer for those who see disabled folks as always in need of help. So little is written about people with disabilities and their relationships to each other, although in independent movies I'm seeing more films on this theme. What bothers me sometimes is how it's treated as a "quirky" subject. (In The Guatemalan Handshake, a film I watched last week, a boy in a wheelchair's few lines were about snot and poop and not much more. The exaggerated nature of some of these indie characters is along the lines of Napoleon Bonaparte.)
In any event, back to the wounded healer theme. Edgar's paintings turn out to have the power to heal, to change the course of events turning him into a very powerful artist. Is it possible to read into this book that King is talking about how his own art feels more powerful after his accident? Obviously I did do that, but could be wrong. One thing I do know is that it's exciting to read about a character with a disability who comes across as an agent of change, not a character to be acted upon.
ahh technology!
I have a love/hate relationship with technology. I depend on it to do lots of things, and when it works well, I sing its praises. When things go wrong it can get very ugly
Last night though when I was out with friends, technology showed its humorous side. S, who is legally blind, decided to put K's number in her cell phone using the voice recognition feature. It took a few tries but it worked. "I can do it myself!" she said - and so she did.
Then she tried dialing K's number. Nothing. "Maybe I have the number wrong?" she asked.
K looked at her phone. "No, no service in here."
Time for the wiseacre quad to speak up. "Gee, amazing how both of you pay for cell phone plans, are sitting next to each other and we just spent twenty minutes trying to place a call from a cell phone inches away from the other one - isn't technology productive!"
Maybe you had to be there, especially when the message S left for K sounded on her cell phone a mere 45 minutes later.
Her message? "How close do two phones have to be to connect?"
Last night though when I was out with friends, technology showed its humorous side. S, who is legally blind, decided to put K's number in her cell phone using the voice recognition feature. It took a few tries but it worked. "I can do it myself!" she said - and so she did.
Then she tried dialing K's number. Nothing. "Maybe I have the number wrong?" she asked.
K looked at her phone. "No, no service in here."
Time for the wiseacre quad to speak up. "Gee, amazing how both of you pay for cell phone plans, are sitting next to each other and we just spent twenty minutes trying to place a call from a cell phone inches away from the other one - isn't technology productive!"
Maybe you had to be there, especially when the message S left for K sounded on her cell phone a mere 45 minutes later.
Her message? "How close do two phones have to be to connect?"
Sunday, July 20, 2008
The island holy
I wrote this poem about Holy Island - it has been the home of saints
The island holy
The island holy
What faith to live on Holy Island
the land beneath one’s feet
swallowed by the sea
Upon return greeted by the crash of waves
one must sit and pray and wait.
Bishops Aidan, Cuthbert on the island holy
Saints obedient to the rhythm of life
Knew this:
It is called faith, not face
a joyful sweet surrender
not the art of concealing
displeasure with delay.
Sunday morning walk
[image description: A sign on a yard reads: Holy Roller Painting with a phone number underneath.]I was zooming along minding my own business when I ran across this sign.
It looks like an angel with a paint roller in his/her hand is their logo.
Kind of cool on a Sunday morning.
World Youth Day 2008 ends
As World Youth Day 2008 ends, the Pope tells the youth to make life giving love their mission and reminds them that God is always with us, speaking of St. Augustine.
My favorite St. Augustine quote is: Charity is no substitute for justice withheld.
For a list of the Pope's texts at WYD, please visit Whispers in the Loggia. A Concord Pastor Comments also has some wonderful photos and posts about the Pope's visit that are very enjoyable and spiritual.
My favorite St. Augustine quote is: Charity is no substitute for justice withheld.
For a list of the Pope's texts at WYD, please visit Whispers in the Loggia. A Concord Pastor Comments also has some wonderful photos and posts about the Pope's visit that are very enjoyable and spiritual.
Saturday, July 19, 2008
Limes and cake
...a short story over at A Different Light.
Synopsis: Caring for a spouse with Alzheimer's gives a woman insights into the choices she's made in her own life.
Synopsis: Caring for a spouse with Alzheimer's gives a woman insights into the choices she's made in her own life.
Disturbingly Ironic :Quid Pro Quo
..is a movie in which an able bodied actor, Nick Stahl, plays a guy in a wheelchair who finds out that there are people who want to be disabled and in wheelchairs.
Saw an article in this move in Action, United Spinal's magazine.
This review notes a positive: the lead character, a wheelchair user, is portrayed as a reporter who is active, gets around the city well and doesn't fall into some of the usual cliches about disability.
Saw an article in this move in Action, United Spinal's magazine.
This review notes a positive: the lead character, a wheelchair user, is portrayed as a reporter who is active, gets around the city well and doesn't fall into some of the usual cliches about disability.
Sidewalks and garbage can lids - revisited....
For those who commented/emailed on the garbage/recycling lids on sidewalk issue - I made this video showing new recycling cans - with attached lids! No more scooting around umpteen lids on recycling day - garbage days...well...
Friday, July 18, 2008
VACC Camp
In 1986, a camp was started for ventilation assisted children. Over the years, Dr. Moire Simpser has continued the camp as an offshoot of one of Miami Children's Hospital programs. Dr. Simpser believes that rescuing these children from hospital settings or hospital-like settings in homes and providing them with experiences such as swimming and sailing, in a safe environment, is vital for many reasons, as he explains in the video below.
If you'd like to read more about the camp, please click here.
If you'd like to read more about the camp, please click here.
For those who have spunk
So I go to the ATM machine this morning, which is always an act of faith. I can manage some of it, not much. Basically, a woman came along and she helped me out. Then she turned to me and asked "Do you know who I am?" and introduced herself as Christopher Reeve's mom. No, I hadn't recognized her.
I thanked her. She said no pr
oblem, she admired my spunk. A few minutes later when I went into a store to get an iced tea, she was there again and helped me put a straw in it. You just never know who you're going to meet.This video is of a fountain and also took a picture of some flowers - for my homebound friends and all of those who have spunk, whether we can get around or not. God bless.
I'm sailing around the world....
..with Zac.
You can too. This morning he left Hawaii after making a stop.
Zac at 16 is the youngest sailor to attempt this and so far he's doing fine. More than fine. His blog reads:
My name is Zac Sunderland and I am 16 years old. I am currently sailing across the Pacific Ocean attempting to become the youngest person to circumnavigate the world alone by yacht.
He comes from a family of sailors and , judging from his blog posts, has prepared himself for the long haul, bringing along books to read and study as well as technology to stay in touch, equipment so that he's as safe as possible and an attitude that basically is "can do".
He's just left Hawaii on a stopover where he saw his folks. Twas a little hard to leave. If you have a minute, go on over and say hi. Not that I think he can't do it alone....he can.
I pulled out of the Ala Wai Boat Harbor about 12:00pm today and was hit with 25 knots. I figured the wind was whipping around the island and pressed on going 6 knots under a reefed main sail alone. The wind has died down to about 15-18 knots which is great but the swells are sharp and messy, drenching my cockpit and slapping the hull around. I remembered reading in The Dove, that it is a tradition to throw your lei in the ocean as you leave Hawaii so you know you will go back one day. I made sure to do this because I definitely want to come back here one day
[image description: Zac is shown seated in a hoist near the top of his yacht, looking down. He has sandy brown hair and is wearing a black T shirt and gray jeans.]
... when we love we are fulfilling our deepest need and becoming most fully ourselves, most fully human. Loving is what we are programmed to do, what we were designed for by our Creator. Naturally, I am not talking about fleeting, shallow relationships, I am talking about real love, the very heart of Jesus’ moral teaching: "You must love the Lord your God with all your heart, with all your soul, with all your mind, and with all your strength" and "You must love your neighbour as yourself" (cf. Mk 12:30-31). This, if you like, is the programme that is hard-wired into every human person, if only we had the wisdom and generosity to live by it, if only we were ready to sacrifice our own preferences so as to be of service to others, to give our lives for the good of others, and above all for Jesus, who loved us and gave his life for us. That is what human beings are called to do, that is what it means to be truly alive.
Pope Benedict XVI WYD 2008
Pope Benedict XVI WYD 2008
Factoid
Here's a table that describes how many disabled spaces the American Disabilities Act requires.
Total Parking in Lot -- Required Minimum Number of Accessible Spaces
1 to 25 -- 1
26 to 50 -- 2
51 to 75 -- 3
76 to 100 -- 4
101 to 150 -- 5
151 to 200 -- 6
201 to 300 -- 7
301 to 400 -- 8
401 to 500 -- 9
501 to 1000 -- 2 percent of total
1001 and over -- 20 plus 1 for each 100 over 1000
Source: access-board.gov/adaag/html/adaag.htm
h/t Rolling Rains Report
Thursday, July 17, 2008
New to the blogroll: The Catholic Down Syndrome Society
I'm adding a blog to my blogroll which contains resources and information: The Catholic Down Syndrome Society.
I'd also like to point out the recent article by the blog's author, Leticia Velasquez, entitled Down Not Out, appearing in the National Catholic Register, which discusses, in part, the Prenatally and Postnatally Diagnosed Conditions Awareness Act.
I'd also like to point out the recent article by the blog's author, Leticia Velasquez, entitled Down Not Out, appearing in the National Catholic Register, which discusses, in part, the Prenatally and Postnatally Diagnosed Conditions Awareness Act.
Defeated in 2005, the bill was reintroduced in 2007 by Sens. Brownback, of Kansas, and [Ted] Kennedy, of Massachusetts. It would provide expectant parents up-to-date, scientifically sound information on the medical treatment available to individuals with Down syndrome, access to support groups for parents and a list of potential adoptive parents.
The bill is awaiting debate in the House, after which there is a good chance it will pass and be signed by President Bush.
via National Catholic Register
Consumerism: turning social problems into entertainment
At World Youth Day, the Pope spoke about consumerism and how society is shaped.
Pope Benedict XVI also said faith was a defining characteristic of both strong individuals and strong societies.
"Do not be fooled by those who see you as just another consumer in a market of undifferentiated possibilities, where choice itself becomes the good, novelty usurps beauty, and subjective experience displaces truth," he told the pilgrims.
He said the pilgrims should not be convinced by arguments that a society without religion would be neutral, impartial and inclusive of everyone.
"If God is irrelevant to public life, then society will be shaped in a godless image, and debate and policy concerning the public good will be driven more by consequences than by principles grounded in truth," he said. via news.com.au
These words remind me of documentaries I've seen lately about children living with violence in urban areas, such as Camden and the south Bronx. When I lived in Detroit, gun shots rang out every night within blocks. It wasn't the exception, but the rule. And it was a neighborhood with residences, not a business area. I would walk over to the law school about a mile and a half away and the scenery changed. The university was set apart, far enough so no one could hear the gun shots. Just far enough away.
It seems over the years we as a society have found better ways to distance ourselves from social problems. And rampant consumerism fuels it.
Our kids sit and play Grand Theft Auto. Some children are privileged enough to sit at a screen and make a game out of shooting people when others try to sleep shutting out the sound of real gunfire. That is the state of our society.
The Pope's words urge us to start asking questions about all of this as Christians.
Why have we turned social problems into entertainment? What kind of distance from solutions does that cause for the next generation? Does it normalize the existence of violence and poverty in urban areas? Have we considered the concept of stewardship regarding monies we pay toward products that glorify violence rather than putting it toward solutions?
Do we really believe that some of us are better than others?
Pope Benedict XVI also said faith was a defining characteristic of both strong individuals and strong societies.
"Do not be fooled by those who see you as just another consumer in a market of undifferentiated possibilities, where choice itself becomes the good, novelty usurps beauty, and subjective experience displaces truth," he told the pilgrims.
He said the pilgrims should not be convinced by arguments that a society without religion would be neutral, impartial and inclusive of everyone.
"If God is irrelevant to public life, then society will be shaped in a godless image, and debate and policy concerning the public good will be driven more by consequences than by principles grounded in truth," he said. via news.com.au
These words remind me of documentaries I've seen lately about children living with violence in urban areas, such as Camden and the south Bronx. When I lived in Detroit, gun shots rang out every night within blocks. It wasn't the exception, but the rule. And it was a neighborhood with residences, not a business area. I would walk over to the law school about a mile and a half away and the scenery changed. The university was set apart, far enough so no one could hear the gun shots. Just far enough away.
It seems over the years we as a society have found better ways to distance ourselves from social problems. And rampant consumerism fuels it.
Our kids sit and play Grand Theft Auto. Some children are privileged enough to sit at a screen and make a game out of shooting people when others try to sleep shutting out the sound of real gunfire. That is the state of our society.
The Pope's words urge us to start asking questions about all of this as Christians.
Why have we turned social problems into entertainment? What kind of distance from solutions does that cause for the next generation? Does it normalize the existence of violence and poverty in urban areas? Have we considered the concept of stewardship regarding monies we pay toward products that glorify violence rather than putting it toward solutions?
Do we really believe that some of us are better than others?
Wednesday, July 16, 2008
Fun in wheelchairs
Logan's got it down pat...
[visual image description: The video shows three year old Logan in a wheelchair being pushed slightly up the sides of an incline - his wheelchair, which is yellow, rolls down and around as he smiles and laughs.]
and sometimes teens/young adults wheelchairsurf...
[image description: A young man in a wheelchair is lifted by a crowd at a concert onto the stage and then lifted back through the crowd before he gets back onto the stage and takes a bow.]
[visual image description: The video shows three year old Logan in a wheelchair being pushed slightly up the sides of an incline - his wheelchair, which is yellow, rolls down and around as he smiles and laughs.]
and sometimes teens/young adults wheelchairsurf...
[image description: A young man in a wheelchair is lifted by a crowd at a concert onto the stage and then lifted back through the crowd before he gets back onto the stage and takes a bow.]
The not so good day
We all have them. Days that are not so good. Yesterday was one of mine.
My life consists of living with a certain amount of faith that people will say yes to get my needs met. And sometimes, even though I completely understand, people say no. When everyone says no, it's a problem because -well- being a quadriplegic just doesn't go on vacation.
I went around the corner to get something to eat fairly early in the day. I was unusually hungry, although Meredith had left food to eat and I ran out.
When I went to buy food, no one was willing to cut it up, which meant that I couldn't eat it anyhow so I left without buying anything and tried another place. Same thing. Came home and took care of some things, then went back out to try to get food again. Nope, no one wanted to cut it up.
This was nothing to panic about, by the way. Meredith called and was going to be over. I was just - well - hungrier than usual and wanted something to eat - something more substantial than the snacks here.
I decided to check out other backup arrangements and found a company that delivers food that comes in smaller pieces which seemed like a good idea. I went online to fill out the form , but my assistive technology didn't work on it so when Meredith arrived I was still trying to fill out the form.
"What are you doing?" she asked.
Trying to get something to eat," I said.
"But I left you food-" she said
"I know, I know. I was - just- hungrier!" I said. I told her how I went over twice to get food and couldn't get it cut up. I explained what I was trying to do. She took the laptop and finished the form, then asked me again where I went to try to get food.
I had a mental image of her visiting them and explaining exactly what a quadriplegic is.
I woke up this morning and the first two words I thought of were: wonder and awe. (Not shock and awe.) I watched Grace is Gone last night, a movie about a husband of an Iraqi soldier who dies, leaving two young daughters. Unable to tell the kids, he takes them on a trip. The movie was not your usual Hollywood drama. John Cusack as the widower was realistically distraught, confused, paternal and in shock.
Shock. That's the kind of shock this war is causing. The shock of grief.
The wonder and awe is about the resilience of the human spirit and the kindness and generosity of the human heart. I have faith in both.
Yeah, yesterday was a not so good day. But it was the first day everyone said no. So today will be better. Because I have faith that more people say yes than no. And I have faith that these words might help some people understand why it's so important to support programs for personal care assistants. Relying on the kindness of strangers, albeit workable at times, can leave you - hungry.
My life consists of living with a certain amount of faith that people will say yes to get my needs met. And sometimes, even though I completely understand, people say no. When everyone says no, it's a problem because -well- being a quadriplegic just doesn't go on vacation.
I went around the corner to get something to eat fairly early in the day. I was unusually hungry, although Meredith had left food to eat and I ran out.
When I went to buy food, no one was willing to cut it up, which meant that I couldn't eat it anyhow so I left without buying anything and tried another place. Same thing. Came home and took care of some things, then went back out to try to get food again. Nope, no one wanted to cut it up.
This was nothing to panic about, by the way. Meredith called and was going to be over. I was just - well - hungrier than usual and wanted something to eat - something more substantial than the snacks here.
I decided to check out other backup arrangements and found a company that delivers food that comes in smaller pieces which seemed like a good idea. I went online to fill out the form , but my assistive technology didn't work on it so when Meredith arrived I was still trying to fill out the form.
"What are you doing?" she asked.
Trying to get something to eat," I said.
"But I left you food-" she said
"I know, I know. I was - just- hungrier!" I said. I told her how I went over twice to get food and couldn't get it cut up. I explained what I was trying to do. She took the laptop and finished the form, then asked me again where I went to try to get food.
I had a mental image of her visiting them and explaining exactly what a quadriplegic is.
I woke up this morning and the first two words I thought of were: wonder and awe. (Not shock and awe.) I watched Grace is Gone last night, a movie about a husband of an Iraqi soldier who dies, leaving two young daughters. Unable to tell the kids, he takes them on a trip. The movie was not your usual Hollywood drama. John Cusack as the widower was realistically distraught, confused, paternal and in shock.
Shock. That's the kind of shock this war is causing. The shock of grief.
The wonder and awe is about the resilience of the human spirit and the kindness and generosity of the human heart. I have faith in both.
Yeah, yesterday was a not so good day. But it was the first day everyone said no. So today will be better. Because I have faith that more people say yes than no. And I have faith that these words might help some people understand why it's so important to support programs for personal care assistants. Relying on the kindness of strangers, albeit workable at times, can leave you - hungry.
Tuesday, July 15, 2008
What does a saint look like?
I was out and about yesterday when I saw this sign. I knew I had to put it up on Wheelie Catholic. The saints have been on my mind lately.I read the Pope's words at World Youth Day about Pier Giorgio:
God gave Pier Giorgio all the external attributes that could have led him to make the wrong choices: a wealthy family, very good looks, manhood, health, being the only heir of a powerful family. But Pier Giorgio listened to the invitation of Christ: "Come and follow me." He anticipated by at least 50 years the church's understanding and new direction on the role of the laity....
Pier Giorgio was the kind of person who gave the coat off his back to someone who was cold, who on his deathbed handed items for the poor, with specific instruction, for delivery. As the Pope said, he lived the Beatitudes.
Perhaps our backgrounds and resources differ, but the question remains: when we are blessed with much freedom, do we choose to follow Christ? History teaches that many generations haven't had that freedom, but have sought to follow Christ despite persecution. How much more those of us who are at liberty to openly profess our faith and live it can do!
Last night I watched a documentary called Something Within Me, about St. Augustine's School for the Arts in the south Bronx. Back in the 80's, the curriculum was radically changed to include music instruction to help the children achieve better academically. It worked. Enrollment tripled. Counselors were brought in to help the children deal with the violence on the streets and try to get a good education. Generations of children have been helped.
What matters is that we're following Christ.
I remember one of my CCD students asking me: What does a saint look like? and I replied A saint can look like you. And I pointed at every child in the class. If we do the work before us, if we care for the poor, if we help those in need, we don't have to worry about what it "looks like". Not only that, but we don't control the results. Sometimes our actions are small, like giving away our coat, and other times we are part of a larger collaboration, where generations of children can be helped.
Following Christ can take us down roads we never expected to go. What does that look like? I can hear a child's voice asking.
It's only in the living of it that we'll find out.
[image description: A photo of a white truck. The lettering reads: St. John and underneath Chimney Sweeps.]
Medicare bill -expected veto by President today
Sources say President Bush will veto the Medicare legislation passed last week that blocked pay cuts to doctors, but Congress is expected to override the veto.
Update: Congress overrode the veto.
The House voted 383-41 to override the veto, while the Senate voted 70-26, in both cases far more than the two-thirds necessary to block the president's action. Bush has vetoed 12 bills; this is the third one to be overridden.
With organized medicine and other lobbies promoting the popular measure in an election year, Republicans broke heavily from the White House. A total of 153 House Republicans and 21 Senate Republicans voted to defy the White House. via courant.com
Update: Congress overrode the veto.
The House voted 383-41 to override the veto, while the Senate voted 70-26, in both cases far more than the two-thirds necessary to block the president's action. Bush has vetoed 12 bills; this is the third one to be overridden.
With organized medicine and other lobbies promoting the popular measure in an election year, Republicans broke heavily from the White House. A total of 153 House Republicans and 21 Senate Republicans voted to defy the White House. via courant.com
World Youth Day 2008
From Australia this week: video from WYD is being broadcast online here.
To date, there have been ten World Youth Days since the initiative was begun in 1986 by Pope John Paul II. He invited young Catholics to meet with him on a regular basis, approximately once every two years, for a gathering of worship, prayer, talks, Mass and teaching. Each WYD is centred on a Bible passage. The passage for WYD 2008 is "You will receive power when the Holy Spirit has come upon you; and you will be my witnesses" (Acts 1, 8). via timesonline.co.uk
For a recap of the events, click here.
[image description: The World Youth Day cross is shown, carried by pilgrims.]
Monday, July 14, 2008
The art of travelling lightly
I ran across this travel piece this morning, right after I put up the St. Christopher post. Its author is talking about travel - literally- and suggests two rules:
1. Carry only what you love and
2. Live like a local.
These are great spiritual rules too. When we worry about what could happen or might happen (a large percentage of what never happens), we pack on extra baggage. Packing - or living - as if calamity is going to strike kills the spirit. Carrying that extra burden hurts - and often, we don't realize that we are the only one who can cast it off.
Every time I go out, I travel with faith because, due to my lack of dexterity, I depend on others for assistance. I cannot bring that assistance with me all of the time and I refuse to limit my mobility that way. I suppose carrying faith isn't such a bad thing.
Living like a local, the author writes, is about being able to deal with our fear of the unknown and developing an ability to embrace "the customs and liv[e] like a local". Trying new things out, learning about the ways other live, is a large part of our spiritual journey here on earth. It enriches our lives to do that as well as the lives of others, casting aside our perceptions and assumptions.
It sounds like inclusion to me.
There is a large Hispanic speaking population in our town. Often I find myself explaining the help I need in another language. Sometimes the results are humorous but more often I learn. Perhaps new words, new customs. And, I hope, sometimes the other person learns from me.
I think traveling is something that can be done locally - and done well. There are new things to see if we simply change our route - or the method we use to travel - by foot, bicycle, scooter, wheelchair.
It's all a different experience, but these two rules apply no matter how we get around.
1. Carry only what you love and
2. Live like a local.
These are great spiritual rules too. When we worry about what could happen or might happen (a large percentage of what never happens), we pack on extra baggage. Packing - or living - as if calamity is going to strike kills the spirit. Carrying that extra burden hurts - and often, we don't realize that we are the only one who can cast it off.
Every time I go out, I travel with faith because, due to my lack of dexterity, I depend on others for assistance. I cannot bring that assistance with me all of the time and I refuse to limit my mobility that way. I suppose carrying faith isn't such a bad thing.
Living like a local, the author writes, is about being able to deal with our fear of the unknown and developing an ability to embrace "the customs and liv[e] like a local". Trying new things out, learning about the ways other live, is a large part of our spiritual journey here on earth. It enriches our lives to do that as well as the lives of others, casting aside our perceptions and assumptions.
It sounds like inclusion to me.
There is a large Hispanic speaking population in our town. Often I find myself explaining the help I need in another language. Sometimes the results are humorous but more often I learn. Perhaps new words, new customs. And, I hope, sometimes the other person learns from me.
I think traveling is something that can be done locally - and done well. There are new things to see if we simply change our route - or the method we use to travel - by foot, bicycle, scooter, wheelchair.
It's all a different experience, but these two rules apply no matter how we get around.
Disability Carnival 41 is up!
Over at Retired Waif
Read it, link to it, support it. The next carnival will be hosted over at Pitt Rehab, who is spreading the word about Voki - my new addition.
Read it, link to it, support it. The next carnival will be hosted over at Pitt Rehab, who is spreading the word about Voki - my new addition.
Patron saint of- access lanes?
Last night I spoke to a friend who has a vehicle with a ramp that folds out on the passenger side for disembarking and embarking. She told me that she is having difficulty using her vehicle because people are parking in the access lanes - the striped area in the photo to the left, showing handicap parking spaces separated by an access lane.
I've seen motorcycles parked in access lanes, cars parked in access lanes, and I once met a family having a picnic in the parking lot of Walmart in the access lane where I was parked.
So what's it for? It's to allow the extra room needed for lifts, ramps or even extra long doors to open. It's to permit wheelchair, scooter and other mobility devices room to get next to or near the vehicle to be disassembled, assembled, etc.
It's part and parcel of the handicap spot, not just a lane that separates spots. And it needs to be kept clear.
As my friend was talking about coming out of places and dreading finding the access lane blocked and being unable to get into her car, or riding around to try to find a spot where an access lane was clear so she could even get out, I began to think that perhaps people just don't understand what an access lane is. I'm willing to bet that if more people understood the purpose of the access lane, they'd just leave it be.
Heck, we shouldn't have to pray to the patron saint of access lanes, whoever that might be, just to get in and out of our cars. But I'm thinking St. Christopher, the patron saint of travel, might be the go to guy.
[visual description: Top left: Photo of two handicap spots, with an access lane in between, covered with striped white lines. Right: Photo of a Saint Christopher medal, showing the saint with a staff carrying the child Jesus.]
Sunday, July 13, 2008
Standing Tall by C. Vivian Stringer
Coach Stringer of the Rutgers women's basketball team has written an autobiography revealing the influence of her family and their values on her career and adult life.It is an excellent read and sends the message: work hard and don't look for excuses.
Her dad was a coal miner, although he was a talented musician. Playing music would not have supported the family, however, and Stringer writes about how she learned from his work ethic. Her dad lost his legs and continued to work at the mine office, encouraging his eldest daughter to stand up for what she believed in. Stringer, who coached free for 18 seasons, expresses gratitude for the opportunities she has had and acknowledges her appreciation that she has been able to work at a job that is challenging and involves what she loves - basketball. She is also the parent of a child with a disability- her daughter contracted meningitis at 14 months of age- and she writes about her hopes and dreams for each woman she coaches, that they will learn to face life head on during the time they play on her team.
There is even a chapter on what the "C" stands for in her name. (I'm not telling.)
[visual description: The cover of the book is shown. Coach Stringer is wearing a red suit and holding a basketball, facing right. The title of the book is above her head and her name is to her right. ]
The bench and a citizen in a wheelchair
Citizens - I'd like you to take a look at this picture for a moment. It's a park bench, nestled into an area surrounded by bushes on three sides with a brick path in front of it. The path is rather narrow and there's no space on either side.
I like to sit in that area. However, I can't sit on the bench, which has no arms to support me, and there's no place to put my power chair without it sticking out.
Now consider this: there's another path that runs parallel to this path. There is also a grassy area. Both of those can be used to walk on and, although I can understand some people don't want to walk on the grass, there is the other path. Perfectly fine - maybe five feet away from this one. And yet - I can't sit in this area without having to constantly move aside because these other options aren't clear to other citizens. To them, I am in the way.
Benches don't help me out - in fact, they take up space that, if I was designing the park, I would leave as room for wheelchairs or carriages. Parking spaces so you could enjoy the park without being disturbed or being seen as disturbing others. I wouldn't take all the benches out, just one.
Or perhaps I would mark the parallel path as an alternative one , with a sign that says : If you see a citizen in a wheelchair enjoying nature on the other (too narrow) path, please use this one.
I would avoid the handicapped symbol because I prefer the wording of citizen in a wheelchair. It is empowering. It reminds us that we are all citizens and we have that in common. We all want to enjoy our common areas, like parks.
Anyhow, I appreciate if you took the time to see this bench the way I see it - as an obstruction, as taking up space that could perhaps be used differently.
One of four empty benches. I've never seen more than one used at a time. I say sell it. Create space for citizens in wheelchairs. Carriages. Large dogs. People who like to stand.
Use the money for the sign on the other path.
Changing perspectives on Down syndrome
The sibling of a girl with Down syndrome is working to change peoples' perspectives and provide more information to parents who discover the diagnosis in their child, a Catholic paper reports. Horrified by the 90% abortion rate statistic, Kristin Lanari decided to take action.
Lanari figured if there were more information and education available about “Down’s people,” doctors would be less inclined to recommend abortion and families would be less inclined to take that recommendation. With a grant from the Wisconsin Board for People with Developmental Disabilities, she is compiling reflections for a book of stories about having a sibling with Down syndrome. Lanari hopes the books can be distributed to clinics, hospitals and schools to help families who learn the condition exists in their baby.
via Catholic News Service
Lanari figured if there were more information and education available about “Down’s people,” doctors would be less inclined to recommend abortion and families would be less inclined to take that recommendation. With a grant from the Wisconsin Board for People with Developmental Disabilities, she is compiling reflections for a book of stories about having a sibling with Down syndrome. Lanari hopes the books can be distributed to clinics, hospitals and schools to help families who learn the condition exists in their baby.
via Catholic News Service
Saturday, July 12, 2008
Saturday morning walk
As I was cruising along on my morning walk, I was able to get a few photos - wheelchair view. Below on the left there's a path near a park- you can see how high the flowers look from the Beast (my power chair). To the right, I've added a closeup of yellow day lilies that actually greet me as I go by since they've grown toward the sidewalk. It's quite wonderful to actually slightly brush as I go past them. I'm hoping to pick up a used tripod to hold everything steady so I don't have to ask for as much assistance with taking photos and can use my assistive devices. New hobby?
Side by side by side...
Sometimes while reading websites about disability, I come across posts that are hidden away and deserve a read. Here's one I saw that I'd like to pass along.
This post was written by Andy about using a scooter at Walt Disney World back in 2003-04 and I like it because he talks about the courtesies that are helpful, from scooter users and those on foot, emphasizing that it's about everyone having a good time.
This post was written by Andy about using a scooter at Walt Disney World back in 2003-04 and I like it because he talks about the courtesies that are helpful, from scooter users and those on foot, emphasizing that it's about everyone having a good time.
Friday, July 11, 2008
Melody Gardot- Goodnite
A 2007 VSA International Soloist, Melody continues to perform internationally. Here's a clip from a 2006 performance from this artist with a disability who, after a bicycle accident, decided to make music her career....
She spoke about her disabilities as a result of the accident in an NPR interview.
Since the accident, Gardot has struggled with short-term memory loss, which forces her to write and record compositions before she forgets them. Furthermore, her heightened sensitivity to light and sound — which, despite hearing devices and sunglasses — makes performing somewhat difficult. But she says she still finds it enjoyable.
"To be honest with you, being on stage and performing is the 30, 40, 50 minutes of the most pleasurable experience that I have," Gardot says. "Because it's during that time that I don't really feel any pain. I think it's transcendental, and I also think it's kind of like when you have a headache, and someone punches you in the stomach, you forget all about your head."
She spoke about her disabilities as a result of the accident in an NPR interview.
Since the accident, Gardot has struggled with short-term memory loss, which forces her to write and record compositions before she forgets them. Furthermore, her heightened sensitivity to light and sound — which, despite hearing devices and sunglasses — makes performing somewhat difficult. But she says she still finds it enjoyable.
"To be honest with you, being on stage and performing is the 30, 40, 50 minutes of the most pleasurable experience that I have," Gardot says. "Because it's during that time that I don't really feel any pain. I think it's transcendental, and I also think it's kind of like when you have a headache, and someone punches you in the stomach, you forget all about your head."
Things Heard From A Wheelchair
Two female Ivy League students stand near me by a traffic light, waiting to cross. Student A looks toward me and says to Student B "We should never underestimate people in wheelchairs. After all, wasn't there a president who was in a wheelchair? What was his name? Teddy Roosevelt?"
Student B says "No, that was Franklin Roosevelt. You know, the one who was married to Eleanor Roosevelt. Teddy was his cousin or something."
"Oh."
"I know he thought very highly of Franklin Roosevelt. Even though he was in a wheelchair."
"Yeah and Teddy rode a horse."
Student B says "No, that was Franklin Roosevelt. You know, the one who was married to Eleanor Roosevelt. Teddy was his cousin or something."
"Oh."
"I know he thought very highly of Franklin Roosevelt. Even though he was in a wheelchair."
"Yeah and Teddy rode a horse."
Thursday, July 10, 2008
New Honda compact minivan- available in Japan
Honda is introducing a compact minivan that has a ramp - but before you get too excited about it, I've got to tell you it's not going to be available in the US for those looking for a "better-on-gas" van alternative.
Another issue? The description of the wheelchair accessibility features a manual ramp, which will require assistance for some.
| · | The rear of the wheelchair-accessible variation is lower than the standard Freed. It’s equipped with an easy-to-pull-out aluminum wheelchair access ramp with a sure-grip surface and a slope of just 11°. Used in combination with the wheelchair safety belt, care-providers will find it a safe and convenient means of enabling smooth ingress and egress for people in wheelchairs. |
| · | The design of the second-row captain’s seats helps provide wheelchair passengers with an unobstructed view and helps caregivers easily keep track of all their passengers. There is also a specially designed 3-point ELR seat belt with independent chest and waist belts for the exclusive use of wheelchair passengers. |
It's called the Freed and you can read about it
here.
The photo shows the back of the minivan with the ramp deployed and a manual wheelchair at the bottom of the ramp, ready to board.
Wednesday, July 9, 2008
Medicare freed from gridlock
Sen. Edward Kennedy , recovering from surgery, arrived in the Senate today to cast a vote to break up the gridlock on legislation affecting cuts to physicians in the Medicare program.
Accompanied by his niece Caroline Kennedy, the senator returned home after the important vote.
Our prayers are with him.
"I return to the Senate today to keep a promise to our senior citizens, and that's to protect Medicare," the senator said in a statement issued by his office as the vote was unfolding.
"Win, lose or draw, I wanted to be here. I wasn't going to take the chance that my vote could make the difference."
Kennedy's dramatic return gave Democrats the impetus they needed to free Medicare legislation from gridlock. It had received 59 votes on an earlier test, one short of the 60 needed to advance. Kennedy made 60, and when Republicans saw the outcome was sealed, several of them joined Democrats to pad the margin. via USAToday.comAccompanied by his niece Caroline Kennedy, the senator returned home after the important vote.
Our prayers are with him.
Medicare scams...and cuts
The names of deceased doctors were used by some fraudulent dealers in the sale of durable medical equipment, it is reported in USA Today.
Despite learning of the problem in 2001, the government failed to fix it, the report says. Investigators reviewed billing data submitted by equipment suppliers from 2000 to 2007 using the ID numbers of 1,500 deceased doctors.
This comes at a time when doctors are pressing Congress not to push for cuts and patients are finding it more difficult to obtain care from physicians due to cuts in what physicians receive.News articles report that doctors are bailing out of treating Medicare patients.
For a doctor's commentary on how the cuts to doctors will affect health care on his blog, click here.
Despite learning of the problem in 2001, the government failed to fix it, the report says. Investigators reviewed billing data submitted by equipment suppliers from 2000 to 2007 using the ID numbers of 1,500 deceased doctors.
This comes at a time when doctors are pressing Congress not to push for cuts and patients are finding it more difficult to obtain care from physicians due to cuts in what physicians receive.News articles report that doctors are bailing out of treating Medicare patients.
Just before the Fourth of July recess, the House passed a bill to prevent the Medicare pay cut by a vote of 355 to 59. In the Senate, Republicans blocked efforts to take up the bill, so the cut took effect on July 1, as required by the formula. But the Bush administration has delayed processing of new claims to give Congress time to come up with a compromise.
Senator Harry Reid of Nevada, the majority leader, said he planned to force another vote this week, and Democrats pressed their case over the weekend in their national radio address.
Democrats need just one more vote to pass the bill, and they hope to win over Republicans who were hit by advertisements over the recess. The advertisements assert that Republicans have been protecting “powerful insurance companies at the expense of Medicare patients’ access to doctors.”
...
But President Bush has vowed to veto the bill, so the fight — and the uncertainty — could continue for weeks.
via USAToday.com
For a doctor's commentary on how the cuts to doctors will affect health care on his blog, click here.
Tuesday, July 8, 2008
Restaurant sued for ADA violations....
..but this case was featured on TMZ ...since it involves allegations that the restaurant allowed NFL players to park in handicapped spots - and barred the plaintiffs from the premises in retaliation when they complained. A copy of the story and actual complaint can be found here.
The Question of the Day
...is over at Chewing the Fat. Dave, while sitting in his wheelchair, was asked by someone whom he describes as a beer and cigarette guy if he was "allowed to be out on his own" to which he replied yes, that "it's been cleared with the authorities".
For the next person who comes along
As I took a walk yesterday in my power chair, I rolled around a number of garbage can lids on the sidewalk since it was pickup day.
Suddenly I heard the sound of someone kicking garbage can lids and turned around, to see a thirty something businessman walking along, kicking the same lids to the side. He had his head down, intent on his task.
As he approached, he looked at me and smiled. "It's driving me crazy watching you have to roll around all these lids. I guess you could call it my random act of kindness for the day for the next person who comes along in a wheelchair."
Yes, we live life between the trash pickups.
Suddenly I heard the sound of someone kicking garbage can lids and turned around, to see a thirty something businessman walking along, kicking the same lids to the side. He had his head down, intent on his task.
As he approached, he looked at me and smiled. "It's driving me crazy watching you have to roll around all these lids. I guess you could call it my random act of kindness for the day for the next person who comes along in a wheelchair."
Yes, we live life between the trash pickups.
Monday, July 7, 2008
A box of kleenex in every pew
It's difficult to read this article about the closing of St. Raphael's parish in the Kansas City diocese without thinking about the need to welcome parishioners who are displaced from parishes that close .
It's hard to hear a young teen say she can't stop crying because she was baptized there, made her First Communion there and thought of the parish as her home without wanting to comfort her. It can't have been easy for her pastor to remind the congregation, as he prepared them for the eventual closure, that their faith calls them to follow Jesus, and that may just not be in the parish where they feel at home, but another.
Perhaps we can all say a prayer that neighboring parishes who assimilate those losing theirs will welcome the newcomers with open arms and hearts, like St. Anne's did.
It certainly didn't die from lack of parishioners. It didn't die from the burden of financial distress, or from heart failure or any other kind of failure.
Instead, as Father Justin Hoye, the parish's last administrator noted in his homily at the final Mass, St. Raphael's young life - March 12, 1963 to June 29, 2008 - ended largely because of a growing crisis in the number and availability of priests.
He noted that exactly 100 years earlier to the day, the church in the United States lost its designation as a "mission territory," and gained in stature as a church strong enough to produce its own clergy and religious to meet the needs of its people.
"This is a poignant anniversary for us at St. Raphael's, on a day like today when we acknowledge that the cross we bear is tied to our ability to produce priests to meet the needs of our growing Catholic community," Father Hoye said. "Acceptance of this cross does not mean that everything was done right, does not mean that all issues have been resolved. Accepting this closure - this cross - means an acknowledgment of joining in the totality of Christ's life, including the losses Jesus faced."
via catholickey.org
It's hard to hear a young teen say she can't stop crying because she was baptized there, made her First Communion there and thought of the parish as her home without wanting to comfort her. It can't have been easy for her pastor to remind the congregation, as he prepared them for the eventual closure, that their faith calls them to follow Jesus, and that may just not be in the parish where they feel at home, but another.
Perhaps we can all say a prayer that neighboring parishes who assimilate those losing theirs will welcome the newcomers with open arms and hearts, like St. Anne's did.
Sunday, July 6, 2008
Oliver : a short film
Here's a short film about a young man with Down syndrome - who deals with his experience of being bullied in a creative way.
[visual description:In this short film entitled Oliver, a young man with Down syndrome is stopped by a bully on his way home from work. A coworker comes to his aid. That night, as he lays in bed, he replays the scene in a cartoon/comic strip montage, with himself as Superman. In the comic strip, he confronts the bully, takes away his cigarettes and tells him that smoking isn't good for him. He gets out of bed in the morning and you can see a Superman outfit underneath his work clothes.]
[visual description:In this short film entitled Oliver, a young man with Down syndrome is stopped by a bully on his way home from work. A coworker comes to his aid. That night, as he lays in bed, he replays the scene in a cartoon/comic strip montage, with himself as Superman. In the comic strip, he confronts the bully, takes away his cigarettes and tells him that smoking isn't good for him. He gets out of bed in the morning and you can see a Superman outfit underneath his work clothes.]
Saturday, July 5, 2008
Children loved him
Bozo died over this weekend.
I used to think that he was real when I was a kid. I never thought there was a person under that makeup. I figured Bozo walked around like that all of the time, that he was a clown 24/7. Until, of course, my older brother straightened me out about that, the same way I was straightened out about Santa Claus and the Easter Bunny.
It reminds me of a little boy who was about six who ran alongside me in my wheelchair. His father kept telling the boy to get away from me. Instead of this deterring the kid, he began to run faster alongside me. And then his father put an end to it by grabbing the boy and pulling him away. "That's wrong!" the father said. "You leave people like that alone."
"But I'm playing!" the boy wailed.
I never mind when kids approach me. There's no greater opportunity to teach them not to be afraid of people with disabilities. If it's a cool wheelchair or colored wheels that attracts them, that's okay. After all, kids are- well - kids. They even believe Bozo the clown is real.
There's a magic to childhood that needs to be carefully handled. A child's imagination and curiosity grow through play and sometimes, although it's appropriate to set limits, there's also a need to see that a person on a mobility device to them looks like a new friend who gets around a different way.
I love that kids relate that way to disability. I wish more adults did.
[visual image: A photo of Bozo the clown is shown. He has white face makeup on, red lips, a big red nose, and a red wig. ]
The freedom to annoy?
A prominent Australian Catholic priest and lawyer is defending the rights of people to assemble during World Youth Day, stating that the Church should not support state laws which restrict civil liberties . He argues that the right of expression outweighs visiting pilgrims' rights to be free from being annoyed.
via smh.com.au
Minimizing rights such as the freedom to assemble and speak out is dangerous.
Father Brennan said the Catholic document on human rights, Pacem In Terris, the 1963 encyclical of Pope John, said the responsibility of all authorities was "to safeguard the inviolable rights of the human person".
"As an Australian Catholic lawyer, I am saddened that the state has seen fit to curtail civil liberties further in this instance than they have for other significant international events hosted in Sydney," he said.
...
Dr John Sweeney, the co-ordinator of research at the Edmund Rice Centre, said Jesus Christ had paid the price for saying what he thought and the right to free speech needed defending.
"It would rather be like Jesus calling for a police escort on Palm Sunday. Obviously, he wouldn't and when Jesus went into Jerusalem people yelled out things the religious leaders in their time didn't like and they rebuked Jesus and he said he couldn't quieten his supporters."
via smh.com.au
Minimizing rights such as the freedom to assemble and speak out is dangerous.
Rising gas prices, declining care
This NY times article explores how rising gas prices affect volunteer programs for the elderly and people with disabilities like Meals On Wheels- and also how its forcing home health aides to take jobs in nursing homes because they can't afford the rising price of gas (which in rural areas can be as high as $100/week) on their average of $250/week pay. There is already a shortage of home health care aides due to the low pay.
I can think of a few solutions, such as donating to Meals On Wheels or perhaps seeing if prepaid gas cards could be given to volunteers who take care of the homebound and cannot afford the price of gas. Some of the volunteers who work for Meals on Wheels are seniors themselves and on a limited income.
I can think of a few solutions, such as donating to Meals On Wheels or perhaps seeing if prepaid gas cards could be given to volunteers who take care of the homebound and cannot afford the price of gas. Some of the volunteers who work for Meals on Wheels are seniors themselves and on a limited income.
Friday, July 4, 2008
A new take on buying a vote
A college student in Minnesota tried to sell his vote for the presidential election on ebay. Authorities arrested him and charged him with bribery under a 1893 law.
The scarcely used law had its heyday in the 1920s, when many people sold their votes in exchange for liquor, Assistant County Attorney Pat Diamond said.
The scarcely used law had its heyday in the 1920s, when many people sold their votes in exchange for liquor, Assistant County Attorney Pat Diamond said.
"There are two things going on here in terms of why it's a crime," he said. "One is the notion that elections should be a contest of ideas and not of pocketbooks -- at least not in the sense of straight-out 'I can buy your vote.' The second notion is that everybody gets one vote, and you don't get to buy another one." via cnn.com
What's interesting is that no one tried to buy his vote. There weren't any bids for the posting that asked for a minimum of $10 for the vote.
What would Benjamin Franklin think?
The other night I was reading a book on my Kindle when lightning struck nearby. As the noise died down, I thought of the image of Benjamin Franklin standing with his kite.
What would the guy who came up with the idea of lending books, who played around with electricity, think of technology that allows us to instantly download a book in seconds?
For me, a Kindle falls under the category of assistive technology since it allows me to turn pages and read. I've even learned to convert documents I need to read so that I can avoid hard paper copies.
Those reams of papers young Franklin carried through the streets of Philadelphia to show what a hard working young lad he was would probably be replaced now by a series of links emailed to his boss - or could be easily contained on a device like the Kindle.
A few people have told me that they wouldn't feel the same reading a book if it wasn't three dimensional, held in their hands so they could feel it. They say books have a smell to them and a character that nothing can replace.
They have a point. I'm a book lover myself. I wouldn't argue with any of that. But the technology of being able to access a book almost immediately is phenomenal. I can see Franklin's specs falling off the edge of his nose now as he watched a book appear on the screen, ready to read in seconds.
I'll admit I sometimes go into bookstores in town and check out the used books on the shelves. They have character with their crinkled covers, their earmarked pages, their coffee spills. I used to enjoy buying used paperbacks and finding notes in them. (I once found a grocery list in a sci fi novel that read 'Teleport yourself to 7 11 and get some milk". I never figured out if it was a personal reminder or the bookworm's spouse who wrote it.)
But then I come home and turn on my Kindle which holds 40 ebooks (many that are legally available for free) , the first chapters of the best sellers on the NY Times list, and realize that life is about trade-offs. Nostalgia might be compelling sometimes, but if Benjamin Franklin could have used a Kindle, I bet he would have.
And there's nothing I like better than assistive technology that is designed for use by everyone, along the lines of universal design, that gets rid of "separate and stigmatizing solutions".
[If you are considering using the Kindle as an assistive device and/ or would like to read more about the Kindle and/or obtaining ebooks, please click the label below for more posts and my review, for which I received no compensation- it tells the good and the bad about the device and its features.]
What would the guy who came up with the idea of lending books, who played around with electricity, think of technology that allows us to instantly download a book in seconds?
For me, a Kindle falls under the category of assistive technology since it allows me to turn pages and read. I've even learned to convert documents I need to read so that I can avoid hard paper copies.
Those reams of papers young Franklin carried through the streets of Philadelphia to show what a hard working young lad he was would probably be replaced now by a series of links emailed to his boss - or could be easily contained on a device like the Kindle.
A few people have told me that they wouldn't feel the same reading a book if it wasn't three dimensional, held in their hands so they could feel it. They say books have a smell to them and a character that nothing can replace.
They have a point. I'm a book lover myself. I wouldn't argue with any of that. But the technology of being able to access a book almost immediately is phenomenal. I can see Franklin's specs falling off the edge of his nose now as he watched a book appear on the screen, ready to read in seconds.
I'll admit I sometimes go into bookstores in town and check out the used books on the shelves. They have character with their crinkled covers, their earmarked pages, their coffee spills. I used to enjoy buying used paperbacks and finding notes in them. (I once found a grocery list in a sci fi novel that read 'Teleport yourself to 7 11 and get some milk". I never figured out if it was a personal reminder or the bookworm's spouse who wrote it.)
But then I come home and turn on my Kindle which holds 40 ebooks (many that are legally available for free) , the first chapters of the best sellers on the NY Times list, and realize that life is about trade-offs. Nostalgia might be compelling sometimes, but if Benjamin Franklin could have used a Kindle, I bet he would have.
And there's nothing I like better than assistive technology that is designed for use by everyone, along the lines of universal design, that gets rid of "separate and stigmatizing solutions".
[If you are considering using the Kindle as an assistive device and/ or would like to read more about the Kindle and/or obtaining ebooks, please click the label below for more posts and my review, for which I received no compensation- it tells the good and the bad about the device and its features.]
Thursday, July 3, 2008
Fireworks
I watched the first two episodes of the John Adams HBO series the other night, which made the loud booms from the fireworks a few blocks away seem like so much background noise to the signing of the Declaration of Independence. As I pondered the scene where Jefferson, Franklin and Adams went over the wording in the Declaration of Independence, Franklin changing the language to "It is self evident" from what he deemed Jefferson's version that sounded as if it was from a pulpit, I began to think about inalienable rights. And I've thought about them since.
Something was bothering me about inalienable and unalienable rights. Because, I began to think, lots of people don't get to the point where they can exercise them. Although they do have them, since they are innate rights, part of being human.
It's a conundrum that I've been playing in my head ever since. For the last quarter of a century, I've done work where I've met people from every corner of life, heard their stories , listened to their lives. I've spoken with people in nursing homes and other institutions who could be living in the community if it weren't for economic issues or lack of programs. I've spoken to people with disabilities who can't get jobs, although well qualified. I've spoken to people with disabilities who can't get transportation or housing, who can't pursue happiness the way most of us assume we can. And I've spoken to those who live in poverty, who spend their entire being surviving. Some do not expect to be treated as humans, sadly.
There's that language about the right to life, liberty and the pursuit of happiness. I couldn't help it- I began to think about various individuals and apply each of those rights and it just didn't mesh.
I wrote a poem about in alienable and un alienable rights. But getting to the heart of the matter will take more. I can't wash away all those years of conversations. Nor can I wash away this feeling.
I don't think the fireworks in my town are over this July 4th, as I continue to ponder this.
Something was bothering me about inalienable and unalienable rights. Because, I began to think, lots of people don't get to the point where they can exercise them. Although they do have them, since they are innate rights, part of being human.
It's a conundrum that I've been playing in my head ever since. For the last quarter of a century, I've done work where I've met people from every corner of life, heard their stories , listened to their lives. I've spoken with people in nursing homes and other institutions who could be living in the community if it weren't for economic issues or lack of programs. I've spoken to people with disabilities who can't get jobs, although well qualified. I've spoken to people with disabilities who can't get transportation or housing, who can't pursue happiness the way most of us assume we can. And I've spoken to those who live in poverty, who spend their entire being surviving. Some do not expect to be treated as humans, sadly.
There's that language about the right to life, liberty and the pursuit of happiness. I couldn't help it- I began to think about various individuals and apply each of those rights and it just didn't mesh.
I wrote a poem about in alienable and un alienable rights. But getting to the heart of the matter will take more. I can't wash away all those years of conversations. Nor can I wash away this feeling.
I don't think the fireworks in my town are over this July 4th, as I continue to ponder this.
Media Culture Journal issue: Able available online
M/C Journal was founded (as "M/C - A Journal of Media and Culture") in 1998 as a place of public intellectualism analysing and critiquing the meeting of media and culture. Issues are written about a single word topic.
The July 2008 issue of Media Culture journal is available online. It contains the following articles on the topic - Able:
EDITORIAL: Disabling Able - Liz Ferrier, Viv Muller
FEATURE: Refusing Able(ness): A Preliminary Conversation about Ableism - Fiona Kumari Campbell
Mobilising the Monster: Modern Disabled Performers' Manipulation of the Freakshow - Bree Hadley
Disability, Heroism and Australian National Identity - Martin Mantle
Enabling the Auteurial Voice in Dance Me to My Song - D. Bruno Starrs
Ars Moriendi, the Erotic Self and AIDS - Catalina Florescu
Creating Visible Children? - Nicole Mathews
Shattering the Hearing Wall - Donna McDonald
Amniocentesis and Motherhood: How Prenatal Testing Shapes Our Cultural Understandings of Pregnancy and Disability - Fiona Place
Able to Live, Laugh and Love - Veronica Wain
iTunes Is Pretty (Useless) When You're Blind: Digital Design Is Triggering Disability When It Could Be a Solution - Katie Ellis, Mike Kent
Innovation and Disability - Gerard Goggin
Is There an End to Out-Able? Is There an End to the Rat Race for Abilities? - Gregor Wolbring
Woman opts for assisted suicide rather than nursing home
A German case of assisted suicide is drawing attention because the woman who requested it was not in intractable pain or dying.
Ms. Schardt was 79 years old and healthy at the time she sought out Mr. Kusch to seek out help for assisted suicide. She did not want to go into a nursing home.
Kusch, a German politician who has designed a one button push suicide machine, planned it out carefully to stay within the law.
Ms. Schardt was 79 years old and healthy at the time she sought out Mr. Kusch to seek out help for assisted suicide. She did not want to go into a nursing home.
While Ms. Schardt was not suffering from a life-threatening disease, or in acute pain, her life was hardly pleasant, Mr. Kusch said. She had trouble moving around her apartment, where she lived alone. Having never married, she had no family. She also had few friends, and rarely ventured out.
In such circumstances, a nursing home seemed likely to be the next stop. And for Ms. Schardt, who Mr. Kusch said feared strangers and had a low tolerance for those less clever than she was, that was an unbearable prospect.
...
On Friday, Bavaria and four other German states will push for new laws to ban commercial ventures that help people kill themselves. Suicide itself is not a crime, nor is aiding a suicide, provided it does not cross the line into euthanasia, or mercy killing.
via NYTimes.com
It is important to note that nearby Switzerland has liberal euthanasia laws which has led nearly 500 Germans to cross the border.Kusch, a German politician who has designed a one button push suicide machine, planned it out carefully to stay within the law.
I came to her apartment in Würzburg at about 11 o'clock last Saturday morning,” Mr Kusch, who has no medical training, said. Within half an hour she was preparing the suicide cocktail, he said. Mr Kusch then left the room. When he returned after three hours, Bettina S was dead. The exact procedures used by Mr Kusch were important, designed to keep him within the law and to demonstrate that people could help someone to die without risking jail. via timesonline.co.uk
This is a case that illustrates the dangers of euthanasia and assisted suicide for those who are most vulnerable, where these measures can turn them into expendable people. It is a case that teaches us about what happens when societies fail to provide adequate options to live.
Wednesday, July 2, 2008
Court upholds restraining order in Race case
A judge upheld the restraining order in the case of the autistic boy banned from church.
"Is this the kind of road and precedents we want to set our kids on with special needs in the future?" said Brad Trahan, founder of the RT Autism Foundation in Rochester and the father of an 8-year-old autistic boy.
"I totally understand that the church environment in this case has to be safe.
"But the bottom line is one out of 150 births includes an autistic child and as a society we have to deal with it. We have to be able to go out to church and restaurants and events as one family.
"There are no winners in this situation. The church doesn't win. The family doesn't win, and Adam doesn't win."
via startribune.com
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