A Philadelphia mom is angered over the way her autistic son was treated when his class went on a trip.
While his classmates went on the trip, Jimmy was supposed to enjoy a day of learning, but that was not the case.
Dawn said her son was left in a classroom with only his bus assistant who is not trained to teach autistic children.
"I cried, I cried first and I just had it," Dawn said. "I thought you had a choice, you could just sit there and take it or you do something about it."
In addition to a bus assistant, Jimmy is supposed to have a special education teacher and a therapeutic support worker.
Dawn said support workers or TSS are in short supply.
"We have TSS's that come and go, it's a revolving door and I am done, I am at my breaking point," Dawn said.
Dawn said her problem lies with the school district and not the staff at the Stephen Decatur school. She said the district is failing special needs students.
"It's all broken promises and I don't think I can handle one more broken promise," Dawn said. via cbs3.com
As we all know,these programs only work if they are staffed. Some of these positions pay such a small amount of money that there is a lot of turnover and, as a result, the services don't get to the students . Until we make filling these service positions a priority so people and children with disabilities can get the services they need, it's just not going to happen because it will take a concerted effort - recruiting, raising wages and training are three things that automatically come to my mind.
Saturday, May 31, 2008
Going to the cats and dogs....
A little humor for the pet owners out there....
[visual description: two part video: Part I: St. Peter makes a call from heaven to calm down cat owners; Part II shows a dog pacing in circles before answering a phone.]
[visual description: two part video: Part I: St. Peter makes a call from heaven to calm down cat owners; Part II shows a dog pacing in circles before answering a phone.]
Friday, May 30, 2008
Beyond words
I can't tell you how many posts I've written this week that I haven't put up on this blog. Why? Because I've been practicing with three different new headsets and microphones. I'm switching up my computers.
I took down posts that were written in frustration, those that were boring, and some that were simply self-indulgent. The reality is that any technology takes work and I have no right to complain about what I had to go through this week. But for some reason when my voice recognition stops working or one of my assistive programs has to get ditched or replaced, my impatience rises to a level that's beyond words.
Whenever my ability to get words on paper temporarily gets put on hold, it goes like this: I'm beyond words and that just doesn't feel good.
My earliest memories include writing in composition books that I used to put in my closet. There were so many of them that I had to stack them in cartons. My grandmother found them and asked what I was doing and I told her I was trying to write a novel. I was about 11 years old. To my surprise she didn't laugh at me, but gave me my grandfather's typewriter that he used in World War I and suddenly my writing was condensed into typed letters, single pages that I rarely numbered in my haste to write the next American novel.
My grandfather's typewriter had keys that could bend easily, that you had to be careful when you hit them to type. It was set into a suitcase, so that you could close it in a hurry and take off because as a journalist in the war, he had to be on the run. I tried to imagine my grandfather sitting in a tent, picking out words for an article.
Now I can't even imagine the look on the face of that young soldier-journalist if he could see me sitting here talking into a microphone to a laptop that was magically forming words. Would he have words to describe that?
Perhaps. Maybe he would sit, pecking at those keys, and turn it into a great science fiction story.
One thing I do know is that what's important is about what we have to say, not the way we get it on paper or which medium we use.
I'm just grateful that I'm not beyond words, for the moment.
I took down posts that were written in frustration, those that were boring, and some that were simply self-indulgent. The reality is that any technology takes work and I have no right to complain about what I had to go through this week. But for some reason when my voice recognition stops working or one of my assistive programs has to get ditched or replaced, my impatience rises to a level that's beyond words.
Whenever my ability to get words on paper temporarily gets put on hold, it goes like this: I'm beyond words and that just doesn't feel good.
My earliest memories include writing in composition books that I used to put in my closet. There were so many of them that I had to stack them in cartons. My grandmother found them and asked what I was doing and I told her I was trying to write a novel. I was about 11 years old. To my surprise she didn't laugh at me, but gave me my grandfather's typewriter that he used in World War I and suddenly my writing was condensed into typed letters, single pages that I rarely numbered in my haste to write the next American novel.
My grandfather's typewriter had keys that could bend easily, that you had to be careful when you hit them to type. It was set into a suitcase, so that you could close it in a hurry and take off because as a journalist in the war, he had to be on the run. I tried to imagine my grandfather sitting in a tent, picking out words for an article.
Now I can't even imagine the look on the face of that young soldier-journalist if he could see me sitting here talking into a microphone to a laptop that was magically forming words. Would he have words to describe that?
Perhaps. Maybe he would sit, pecking at those keys, and turn it into a great science fiction story.
One thing I do know is that what's important is about what we have to say, not the way we get it on paper or which medium we use.
I'm just grateful that I'm not beyond words, for the moment.
Mark your calendar: World Congress on Disabilities
"The World Congress on Disabilities is returning to the Delaware Valley. The Pennsylvania Summer WCD Expo will be held at the Greater Reading Expo Center, Friday and Saturday, July 11-12, 2008. Please make plans to join us for 2 days of new product excitement, networking, informative conferences and lots of fun. See hundreds of the newest products and services, and meet thousands of people - seniors, people with disabilities, their families and caregivers. And the professionals who serve this community."
For more information, click here.
For more information, click here.
Thursday, May 29, 2008
Wednesday, May 28, 2008
Dear Wheelie Catholic...
I'm laid up with a broken leg and two broken arms. I notice you gave people ideas of things to do when they're bored. Please help me!
A Grumpy Guy
Dear GG,
I bet you haven't seen this yet - it's called Slacker Internet Radio and it's free!
Take care of yourself!
A Grumpy Guy
Dear GG,
I bet you haven't seen this yet - it's called Slacker Internet Radio and it's free!
Take care of yourself!
Just call me curious...
...George.
Monkeys control a robot arm with their thoughts..an article of interest to many....
Two monkeys with tiny sensors in their brains have learned to control a prosthetic arm with only their thoughts, using it to reach for and grab food and even to adjust for the size and stickiness of morsels when necessary, scientists reported Wednesday. via NY Times.com
Monkeys control a robot arm with their thoughts..an article of interest to many....
Two monkeys with tiny sensors in their brains have learned to control a prosthetic arm with only their thoughts, using it to reach for and grab food and even to adjust for the size and stickiness of morsels when necessary, scientists reported Wednesday. via NY Times.com
Darwinism is alive and well in our school system
Over at The Gimp Parade, Kay is writing about Alex, who was kicked out of his kindergarten class after the teacher had the class vote whether to keep him out. They all lost, 14-2. Worse yet, the class was asked to tell him how they felt about him, and words like "disgusting" were thrown around.
Alex is in the process of being diagnosed with Asperger's/autism and, according to some, the diagnosis has already been made. In any event, the teacher was present at IEP meetings and knew this history.
This is the third post I've tried to write about this event. Why? Because yesterday and today my own nephew is going through his own situation. No, he wasn't kicked out of a classroom. But he's unable to go on a class trip, because it involves things like rock climbing and apparently fording rivers and streams and things like that. I guess it's like a sixth grade Survivors thing or something.
Here's the kicker: there's no alternative to this trip. If you're not able to go, you are just out of luck. Not a big deal, perhaps, to adults. I guarantee you it's a bigdeal to him. Watching the bus pull out with everyone else on it? Hearing everyone talk about it? Excluded yet again, as he is day after day because of how we set up our educational system - still.
These "little things", these events that perhaps seem small and it's just too much of a bureaucratic hassle to fix, loom large in the lives of our children.
I still remember my sixth grade class trip. Gary spilled Pepsi on the bus and I spent all day with sticky socks walking around New York. Ew. And my best friend and I got to see artwork that we never would have seen at that age. I also had my first kiss. Yes, Gary. Ew.
My nephew could have gone on so many other kinds of trips. He would have gladly gone if this wasn't such an extreme trip, one set up that it can't possibly be made accessible. I question why physical prowess is still so important in our society because, conscious or unconscious, we differentiate on so many levels on that basis alone.
And then there's Alex. If you ask his mom, she'd say we still have pack behavior and pick on the weakest, most vulnerable and even teach our young to do the same. Even educators, who should know better.
Maybe we've all watched too many of the Survivor shows
Darwinism is alive and well in our school system.
To see what others are saying, click here.
Alex is in the process of being diagnosed with Asperger's/autism and, according to some, the diagnosis has already been made. In any event, the teacher was present at IEP meetings and knew this history.
This is the third post I've tried to write about this event. Why? Because yesterday and today my own nephew is going through his own situation. No, he wasn't kicked out of a classroom. But he's unable to go on a class trip, because it involves things like rock climbing and apparently fording rivers and streams and things like that. I guess it's like a sixth grade Survivors thing or something.
Here's the kicker: there's no alternative to this trip. If you're not able to go, you are just out of luck. Not a big deal, perhaps, to adults. I guarantee you it's a bigdeal to him. Watching the bus pull out with everyone else on it? Hearing everyone talk about it? Excluded yet again, as he is day after day because of how we set up our educational system - still.
These "little things", these events that perhaps seem small and it's just too much of a bureaucratic hassle to fix, loom large in the lives of our children.
I still remember my sixth grade class trip. Gary spilled Pepsi on the bus and I spent all day with sticky socks walking around New York. Ew. And my best friend and I got to see artwork that we never would have seen at that age. I also had my first kiss. Yes, Gary. Ew.
My nephew could have gone on so many other kinds of trips. He would have gladly gone if this wasn't such an extreme trip, one set up that it can't possibly be made accessible. I question why physical prowess is still so important in our society because, conscious or unconscious, we differentiate on so many levels on that basis alone.
And then there's Alex. If you ask his mom, she'd say we still have pack behavior and pick on the weakest, most vulnerable and even teach our young to do the same. Even educators, who should know better.
Maybe we've all watched too many of the Survivor shows
Darwinism is alive and well in our school system.
To see what others are saying, click here.
Tuesday, May 27, 2008
The best things in life are free
Yes, it's time for a musical number here at Wheelie Catholic. And a reminder that the best things in life are free.
I've been getting emails from people who'd like to know where to find out more about Catholicism. I've emailed them back with suggestions, but would also like to add that The Mary Foundation offers free materials.
I've been getting emails from people who'd like to know where to find out more about Catholicism. I've emailed them back with suggestions, but would also like to add that The Mary Foundation offers free materials.
Missing the mark(et)
Over this past week I've talked to about a dozen friends and acquaintances who have disabilities. Most of our conversations were about how we're spending time researching and tracking down what we need so that we can find affordable solutions for disability products. The high price of gas and food is squeezing the disability community into finding solutions that are more in line with mainstreamed products at lower prices as a practical solution.
The products we need aren't dissimilar to ones needed by others in some instances. Now there are products for seniors that weren't sold years ago so cheaply. They're marketed to older people, and cost less than items sold especially to a disabled market. The minute an item is sold as a disability device, the price is higher. And there is a group of us looking around saying that we just don't want to play that game. We're finding ways around it- and in the process saving ourselves a lot of time, money and aggravation.
Searching for items that are mainstreamed has many advantages. There are lower prices, it's easier to test products out, and you have more choices. It's easier to get service on the items you buy, with quicker repairs.
Basically it's about being treated like a consumer rather than a patient.
[via Dragon Naturally Speaking voice recognition without editing]
Monday, May 26, 2008
blogging business
Over the years I've had a lot of different computer setups so that I could run Dragon NaturallySpeaking. Dragon NaturallySpeaking version nine, works very well. it's far from perfect, however, and I've been using a Mac program to do the edits. Sadly, my poor iBook is no longer up to the task of being an editor and the Windows programs I can find just don't work as well. Right now, I can't come up with a solution in terms of software on the Windows platform that's equivalent to what I've been doing and , although I can edit by voice,it's not taking care of every error nor is it time efficient.
So as much as I would like the content of this blog to be 'perfect', I really can't take the time and energy to do the amount of editing that would take. after thinking this over, and knowing that the resources I have, must go towards the work I produce for my job, I've decided that I will just indicate at the end of the post that it was dictated with voice-recognition .
Which works darn well, I think. And, as Henry James said, Excellence does not require perfection, a quote I found on Lady Bracknell's blog that made me feel considerably better about this whole technological can of worms. (She has found some wonderful jewelry at Etsy, by the way.)
(Dictated via Dragon NaturallySpeaking without editing)
So as much as I would like the content of this blog to be 'perfect', I really can't take the time and energy to do the amount of editing that would take. after thinking this over, and knowing that the resources I have, must go towards the work I produce for my job, I've decided that I will just indicate at the end of the post that it was dictated with voice-recognition .
Which works darn well, I think. And, as Henry James said, Excellence does not require perfection, a quote I found on Lady Bracknell's blog that made me feel considerably better about this whole technological can of worms. (She has found some wonderful jewelry at Etsy, by the way.)
(Dictated via Dragon NaturallySpeaking without editing)
Memorial Day pieces
Two links for Memorial Day:
Please visit A Concord Pastor Comments, where there is a beautiful Memorial Day prayer and post up.
And a piece at Godspy :Meeting the War Wearied With Christ
when members of the Catholic clergy meet an Iraqi woman whose brother told her to find them if she needed help.
[visual image: A section of Arlington cemetery, where soldiers killed in Iraq and Afghanistan are buried. There are rows of graves and the one in the forefront has an American flag in front of it.]
fighting to get out the front door
When we were kids, my grandmother lived with us. There were four of us and whenever we went anywhere, it always took coordination make it work. One of us would forget our jacket, another would be busy doing something as our name was called. And my grandmother would sit there, shaking her head, and say we're always fighting to get out the front door
This phrase takes on new meaning whenever I work toward helping someone get a ramp
so they can get out of their house. as more and more people are able to get ramps to be part of community, we will see more inclusion.
But it is that fighting to get out the front door that has to happen first. I suppose this may surprise some people who think of inclusion as a matter of having a ramp at church. Inclusion as defined by the Church includes social inclusion as well which can only happen with accessible housing-a fact I'm reminded of everyday when I leave my house, by virtue of a ramp.
(dictated Dragon NaturallySpeaking without editing )
This phrase takes on new meaning whenever I work toward helping someone get a ramp
so they can get out of their house. as more and more people are able to get ramps to be part of community, we will see more inclusion.
But it is that fighting to get out the front door that has to happen first. I suppose this may surprise some people who think of inclusion as a matter of having a ramp at church. Inclusion as defined by the Church includes social inclusion as well which can only happen with accessible housing-a fact I'm reminded of everyday when I leave my house, by virtue of a ramp.
(dictated Dragon NaturallySpeaking without editing )
Sunday, May 25, 2008
On the day before Memorial Day : Merlin's Miracles
Marine Merlin German was burned over 97% of his body in Iraq and was dubbed the Miracle Man by doctors. He underwent three years of surgeries on his body, before passing away from complications from a surgical procedure.
Those are the facts. The truth is that when you read about Merlin, what you start to realize is that during his life, he positively affected the lives of many around him. Hospital staff members and other patients talk about his positive attitude despite the pain and difficulty of the procedures he constantly underwent. And then, of course, there's the foundation he left for children with burn injuries - Merlin's Miracles. He created this fund in order that children who are burn survivors could realize their dreams and live well after having a burn injury.
On this day before Memorial Day, I'd like to feature Merlin's Miracles as a way to honor the positive attitude this young man showed which teaches all of us that we can reach out and help others, no matter what our circumstances.
On this Memorial Day, we not only honor those who have died, but think of those who survive with injuries and disabilities. Burn injuries aren't often discussed. Many of our vets are getting burn injuries because of IEDs. These injuries can result in difficulties when out in public due to disfiguration. Plastic surgery can help, but since the skin stretches, there is a limit to what it can do. Burn injuries can also result in loss of function - e.g. Merlin lost his fingers due to burns. The number of surgeries required after burn injuries can take years and, of course, a myriad of other health issues can arise, leaving the families and loved ones in need of a great deal of support.
All of these experiences are important for the rest of us to know and understand, so that when we meet a burn survivor (for yes they are survivors!) and/or his/her family , we can be open to their presence in our lives.
Please take a moment to visit Merlin's Miracles, say a prayer, buy a t shirt, donate - whatever your heart moves you to do and your wallet can bear.
Those are the facts. The truth is that when you read about Merlin, what you start to realize is that during his life, he positively affected the lives of many around him. Hospital staff members and other patients talk about his positive attitude despite the pain and difficulty of the procedures he constantly underwent. And then, of course, there's the foundation he left for children with burn injuries - Merlin's Miracles. He created this fund in order that children who are burn survivors could realize their dreams and live well after having a burn injury.
On this day before Memorial Day, I'd like to feature Merlin's Miracles as a way to honor the positive attitude this young man showed which teaches all of us that we can reach out and help others, no matter what our circumstances.
On this Memorial Day, we not only honor those who have died, but think of those who survive with injuries and disabilities. Burn injuries aren't often discussed. Many of our vets are getting burn injuries because of IEDs. These injuries can result in difficulties when out in public due to disfiguration. Plastic surgery can help, but since the skin stretches, there is a limit to what it can do. Burn injuries can also result in loss of function - e.g. Merlin lost his fingers due to burns. The number of surgeries required after burn injuries can take years and, of course, a myriad of other health issues can arise, leaving the families and loved ones in need of a great deal of support.
All of these experiences are important for the rest of us to know and understand, so that when we meet a burn survivor (for yes they are survivors!) and/or his/her family , we can be open to their presence in our lives.
Please take a moment to visit Merlin's Miracles, say a prayer, buy a t shirt, donate - whatever your heart moves you to do and your wallet can bear.
To Be and To Have: Movie Review
This 2003 French documentary may have you believing it's about a rural school room in France and a commentary on the educational system. I found it to be much more than that.
In the one-room classroom, Georges Lopez, a 55-year-old teacher about to retire, teaches a class of 13 children ages 5 to 11. He talks about how he is the son of farmers and how he always wanted to be a teacher. The film shows him at work in the classroom, dealing with discipline issues, learning difficulties and emotional issues of the children. His quiet dedication and calm discipline speaks volumes about what it means to be a teacher.
There are also film clips of children being tutored at home by their parents and families. In one scene, an entire family tries to help a student with his math assignment and in the end appears to confuse him even more. The film has a sensitive, gentle tone about the very real difficulties of providing a good education under circumstances that are far from ideal.
The film provides no solutions and in fact ends as several of the students move on to middle school, somewhat unprepared despite the teacher's almost heroic efforts to prepare them. He does what he can, however, to provide each student who is moving on with the necessary resources, with the same loving care he shows while they are under his tutelage.
I guarantee if you take the time to watch this documentary, you won't soon forget Georges Lopez or the children you meet.
You can find another review of the movie here.
Update: the French film The Class won this year's Canne's festival. Find a clip of the movie here.
In the one-room classroom, Georges Lopez, a 55-year-old teacher about to retire, teaches a class of 13 children ages 5 to 11. He talks about how he is the son of farmers and how he always wanted to be a teacher. The film shows him at work in the classroom, dealing with discipline issues, learning difficulties and emotional issues of the children. His quiet dedication and calm discipline speaks volumes about what it means to be a teacher.
There are also film clips of children being tutored at home by their parents and families. In one scene, an entire family tries to help a student with his math assignment and in the end appears to confuse him even more. The film has a sensitive, gentle tone about the very real difficulties of providing a good education under circumstances that are far from ideal.
The film provides no solutions and in fact ends as several of the students move on to middle school, somewhat unprepared despite the teacher's almost heroic efforts to prepare them. He does what he can, however, to provide each student who is moving on with the necessary resources, with the same loving care he shows while they are under his tutelage.
I guarantee if you take the time to watch this documentary, you won't soon forget Georges Lopez or the children you meet.
You can find another review of the movie here.
Update: the French film The Class won this year's Canne's festival. Find a clip of the movie here.
Saturday, May 24, 2008
Parents of children with disabilities speak out...
Javier Prato is a filmmaker in LA who has put together this short and wonderful video where parents of children with disabilities talk about their concerns and also their joys. Thanks, Javier, for your work! Love the Mother Teresa quote: Peace begins with a smile :)
Supporting parents of children with disabilities in our faith communities
My sister, who has a son with disabilities, has been fortunate enough to find a Bible study group where she can get support and talk about some of the issues and joys of raising a kid with cerebral palsy and PVL. She often tells me how she looks forward to the group.
I wonder, with a better understanding , if some of the problems (as they are called) of including children with disabilities in churches such as the recent case of a boy with autism, would get to that point if the parents of children with disabilities were receiving this kind of support and understanding. And if they aren't, maybe that points out that there are bigger problems than we may originally think.
Because how we behave when we're not in church is really important too.
A parent who had a child with a severe disability who was able to get to Mass, but not able to go to any other church functions because of the care the child required told me that her church had a program which provided respite care to help with eldercare, including nurses and others who could have cared for her child, but when she approached them to see if she could get some help , she was turned down - and the folks running the elder care respite program asked her to volunteer with that!
Whose responsibility is it to assist parents of children with disabilities when they need a break? There are some state programs out there, although it varies. Some families can help some of the time. But the reality is that many parents get no break. This is sad, because it not only affects the parent, but the rest of the family and their quality of life. Sometimes a parent can't even attend a funeral or make an appointment for their own medical care.
We need to look for ways that we can celebrate family values by supporting parents of children with disabilities in our faith communities. If you know of some ways this has been done or have some suggestions, please feel free to leave a comment.
I wonder, with a better understanding , if some of the problems (as they are called) of including children with disabilities in churches such as the recent case of a boy with autism, would get to that point if the parents of children with disabilities were receiving this kind of support and understanding. And if they aren't, maybe that points out that there are bigger problems than we may originally think.
Because how we behave when we're not in church is really important too.
A parent who had a child with a severe disability who was able to get to Mass, but not able to go to any other church functions because of the care the child required told me that her church had a program which provided respite care to help with eldercare, including nurses and others who could have cared for her child, but when she approached them to see if she could get some help , she was turned down - and the folks running the elder care respite program asked her to volunteer with that!
Whose responsibility is it to assist parents of children with disabilities when they need a break? There are some state programs out there, although it varies. Some families can help some of the time. But the reality is that many parents get no break. This is sad, because it not only affects the parent, but the rest of the family and their quality of life. Sometimes a parent can't even attend a funeral or make an appointment for their own medical care.
We need to look for ways that we can celebrate family values by supporting parents of children with disabilities in our faith communities. If you know of some ways this has been done or have some suggestions, please feel free to leave a comment.
I've learned from you too....
One of the gifts Ive received via blogging online has been to meet so many wonderful parents of children with disabilities. These are people I may otherwise not have met.
When I read Kathryn's introduction to the disability carnival yesterday, where she spoke about learning about disability from people in the disability community who have disabilities, I was struck by the fact that I've never written about all I've learned from people like her. There are many of them online-some of them regular readers and others who stop by once in a while.
I want all of them to know-and I want everybody to know-what a wealth of information and resources parents of kids with disabilities carry with them. They are advocates, nurses, research scholars, teachers and professors, doctors, lawyers, cashiers, secretaries, waitresses and more. Some are stay-at-home moms, and some are single parents. These parents often raise children with disabilities in spite of obstacles faced that involve financial, legal and medical hurdles.
These parents are resourceful and creative because they learn quickly that they have to navigate the system, often at times only with the help of other parents. Sometimes they have to do this when they are tired, stressed and raising a number of children without disabilities who also require their attention.
They want the best for their kids, but they also want their children to have manageable lives. This doesn't always mean they agree with the IEP programs set out for their children and sometimes they are at odds with educators about what is best for their kids. Sometimes they are, I've learned, at odds with each other and disagree on issues just like the rest of the disability community.
Why should they be any different? After all, one of the things I love about the disability community is its diversity and its ability to include people, even when we live different lives and have different perspectives. When East meets West is really when we learn the most.
So may I say thank you to all of you parents for teaching me about your perspective. My understanding of living with a disability is enhanced because you have shared your experiences and writings with me and with many others. As the disability community grows online, I hope more and more people read blogs written by parents of children with disabilities. It will give you an understanding of disability issues and experiences that is necessary for all of us to have if we are going to be able to relate to each other.
When I read Kathryn's introduction to the disability carnival yesterday, where she spoke about learning about disability from people in the disability community who have disabilities, I was struck by the fact that I've never written about all I've learned from people like her. There are many of them online-some of them regular readers and others who stop by once in a while.
I want all of them to know-and I want everybody to know-what a wealth of information and resources parents of kids with disabilities carry with them. They are advocates, nurses, research scholars, teachers and professors, doctors, lawyers, cashiers, secretaries, waitresses and more. Some are stay-at-home moms, and some are single parents. These parents often raise children with disabilities in spite of obstacles faced that involve financial, legal and medical hurdles.
These parents are resourceful and creative because they learn quickly that they have to navigate the system, often at times only with the help of other parents. Sometimes they have to do this when they are tired, stressed and raising a number of children without disabilities who also require their attention.
They want the best for their kids, but they also want their children to have manageable lives. This doesn't always mean they agree with the IEP programs set out for their children and sometimes they are at odds with educators about what is best for their kids. Sometimes they are, I've learned, at odds with each other and disagree on issues just like the rest of the disability community.
Why should they be any different? After all, one of the things I love about the disability community is its diversity and its ability to include people, even when we live different lives and have different perspectives. When East meets West is really when we learn the most.
So may I say thank you to all of you parents for teaching me about your perspective. My understanding of living with a disability is enhanced because you have shared your experiences and writings with me and with many others. As the disability community grows online, I hope more and more people read blogs written by parents of children with disabilities. It will give you an understanding of disability issues and experiences that is necessary for all of us to have if we are going to be able to relate to each other.
Friday, May 23, 2008
38th Disability Blog Carnival: Spirituality and Disability
I invite all my readers to go over to visit the disability blog carnival about spirituality and disability held over at Ryn's Tales.
There are many posts addressing different topics of interest to all of us, written by people with disabilities, parents of kids with disabilities and allies, folks who read and share along. I've had readers ask me if they are an ally- to which I usually reply "If you're reading this, usually the answer is 'yes' ". Much learning goes on, which is two way. As Kathryn writes in her beautiful opening to the carnival:
I can never separate the experience of being a mother with that of being a mother of a child with disability. I don't know what it is like to parent anyone else but Ellie. But this experience in all is magnitude has helped me unfold as a soul. I am more patient than I was before, I am happier than I was before Ellie, and I am way, way less ignorant about disablism. Because I was ignorant about it all before and I am still learning. In this carnival I learned that the term "confined to a wheelchair" is pejorative. Many of you out there are saying, Duh!. But I am being honest here - now that it's in front of me, I get it, but it wasn't something I realized until someone put it in my face. Hence the beauty of the Disability Blog Carnival.
Please join us.
There are many posts addressing different topics of interest to all of us, written by people with disabilities, parents of kids with disabilities and allies, folks who read and share along. I've had readers ask me if they are an ally- to which I usually reply "If you're reading this, usually the answer is 'yes' ". Much learning goes on, which is two way. As Kathryn writes in her beautiful opening to the carnival:
I can never separate the experience of being a mother with that of being a mother of a child with disability. I don't know what it is like to parent anyone else but Ellie. But this experience in all is magnitude has helped me unfold as a soul. I am more patient than I was before, I am happier than I was before Ellie, and I am way, way less ignorant about disablism. Because I was ignorant about it all before and I am still learning. In this carnival I learned that the term "confined to a wheelchair" is pejorative. Many of you out there are saying, Duh!. But I am being honest here - now that it's in front of me, I get it, but it wasn't something I realized until someone put it in my face. Hence the beauty of the Disability Blog Carnival.
Please join us.
I see British people...
The Telectroscope, an invention that allows people in London or NY to see each other opened this week. People from either city can talk and visit with each other through the device, which resembles a giant telescope, as seen in this photo.
As the Telegraph notes, it may sound like something out of 1950s science fiction, but it's a real device that people are paying to use to exchange cell phone numbers with their new acquaintances overseas.
Positioned near Tower Bridge, it allows people to watch and wave to their counterparts in New York, who peer through an identical scope near the Brooklyn Bridge, in real time.
It is the invention of Paul St George, a 53-year-old artist based in London Using a broadband internet connection to transmit video images between the two venues, the Telectroscope gives the impression that the cities are connected via a telescope under the Atlantic Ocean. For £1 a go, visitors can wave down the pipe, which is situated outside City Hall, and see New Yorkers waving back. via telegraph.com
Did you ask someone to take the garbage out?
Uh oh. Sometimes when Meredith gets a cold or scheduling gets turned around, she asks me: Did you ask someone to take the garbage out?
Because work is very busy, I scramble around to find someone and I come up with the strangest folks sometimes, as you can see (or hear) in this video:
[visual description: R2D2 takes out the garbage can to the curb and leaves. The can opens and two little robots come out, dumping garbage with them. When R2D2 returns and looks in the can, the little robots push him in head first.]
Sometimes I have to use my better judgment and just let the garbage wait until the next pickup...
Because work is very busy, I scramble around to find someone and I come up with the strangest folks sometimes, as you can see (or hear) in this video:
[visual description: R2D2 takes out the garbage can to the curb and leaves. The can opens and two little robots come out, dumping garbage with them. When R2D2 returns and looks in the can, the little robots push him in head first.]
Sometimes I have to use my better judgment and just let the garbage wait until the next pickup...
Thursday, May 22, 2008
The Spiritual Bottom Line
This was a difficult week for me. I was tremendously saddened to hear the story of the boy with autism who was excluded from church. I'm saddened that the situation came to the point where a restraining order was sought, as are many other Catholics, with and without disabilities, to whom I've talked. How did the situation come to that? It's a question I ask because I am a Catholic, not just a Catholic with a disability.
How very tragic it is that things have come to this point for all of us in our society: that courts of law are used to achieve resolution of issues involving people with disabilities. From a moral point of view, it's a disgrace to our society that we had to pass a law to make it illegal to discriminate against people with disabilities. We need it. There are those who argue that it is unnecessary while simultaneously ignoring the barriers that force people with disabilities to jump through hoops to prove themselves on an unequal playing field.
I toil on that playing field every day. It sometimes feels as if I'm playing in the NFL without a helmet, the hits I take. It's very real that many obstacles still exist.
Anyone who tells you that our society (and that includes our churches) has arrived at inclusion, at full participation of people with disabilities, needs to sit down and talk with more people with disabilities. I address these remarks to members of the disability community as well as to those who don't have a disability: just because you know people with disabilities who have "made it" (or you have a disability and feel you have made it yourself) is not a reason to assume that everyone else is okay, nor is it a reason to blame those who haven't. It's much easier to ascribe to the philosophy that those who haven't made it just have a bad attitude or handle it wrong than to listen to real people tell their stories of everyday life. It is a diverse and complex community.
In the same way, although inclusion is simple as the right answer when we talk from a spiritual point of view, as a practical matter, it can be complex because of the great variation in what practicing inclusion means. As we are learning from the news stories, the needs of a family with a child with autism vary a great deal from a person who uses a wheelchair. To some, it may seem discouraging to even attempt to meet the needs of those who have different disabilities. How many times I've heard that said.
And yet, I'm here to tell you that it's really quite simple in a way that isn't often discussed. The solution oftentimes is to ask the person with a disability (or, if he or she cannot communicate independently, their family), what is needed to solve the issues that are presented. This needs to be done before matters get to the point where the needs of the community are in conflict with the needs of the person with the disability, before emotions run high, before situations become personalized. Failing to take this step in a timely manner is the number one reason inclusion fails in any given situation. This is why having a disability ministry in every parish is so important. It is only through the acknowledgment that inclusion is a real issue that needs to be addressed that it will be achieved. Let me explain what I mean.
Even though I have a disability, I've learned to recognize that when I'm around friends with other disabilities, I adjust to include them. When I travel with blind friends, I describe our surroundings. When I travel with paraplegic friends, they often assist me. When I'm with friends of short stature, I make sure towels in the bathroom are pulled down by the hotel employees. How did I learn this? By being around them. It is simple, yet clear to me that people with disabilities and those who live around them learn to be resourceful and creative so all are included. This is the role a disability ministry can play in each and every parish. And it's very important that we work toward this goal. Why?
Every one of us desires to be included with a yearning that is so deep, so passionate, so heartfelt that it cannot and should not be dismissed out of hand by another human being. It is because we are all spiritual beings, created equally by God and are meant to be brothers and sisters, living in community, each of us bringing what another cannot. As for inclusion, we can do for each other what we may initially think is impossible because God is present.
What is complex is that we have to redefine what and who is important. This means defying many of the social mores that are so entrenched- our attitudes toward those who we've been taught are less important than us, whose needs don't matter as much, whose presence is seen as a burden. That our time is too important, as Henri Nouwen thought when he first started to help Adam, a man with disabilities, with his daily care at L'Arche, a task that required more patience than he felt he could muster until he understood that there was nothing more important he could be doing than to minister to him, because Adam was God's beloved. Yes, this calls for us to rebel against what we may have unconsciously accepted: that those with disabilities don't belong in our communities, but should be kept out of sight or go "someplace else".
But there is nowhere else to go. That's why we need disability ministries in each parish, not just in each diocese. There is one community of God. We must move toward embracing, not merely tolerating, its members in both our churches and in our society at large.
How very tragic it is that things have come to this point for all of us in our society: that courts of law are used to achieve resolution of issues involving people with disabilities. From a moral point of view, it's a disgrace to our society that we had to pass a law to make it illegal to discriminate against people with disabilities. We need it. There are those who argue that it is unnecessary while simultaneously ignoring the barriers that force people with disabilities to jump through hoops to prove themselves on an unequal playing field.
I toil on that playing field every day. It sometimes feels as if I'm playing in the NFL without a helmet, the hits I take. It's very real that many obstacles still exist.
Anyone who tells you that our society (and that includes our churches) has arrived at inclusion, at full participation of people with disabilities, needs to sit down and talk with more people with disabilities. I address these remarks to members of the disability community as well as to those who don't have a disability: just because you know people with disabilities who have "made it" (or you have a disability and feel you have made it yourself) is not a reason to assume that everyone else is okay, nor is it a reason to blame those who haven't. It's much easier to ascribe to the philosophy that those who haven't made it just have a bad attitude or handle it wrong than to listen to real people tell their stories of everyday life. It is a diverse and complex community.
In the same way, although inclusion is simple as the right answer when we talk from a spiritual point of view, as a practical matter, it can be complex because of the great variation in what practicing inclusion means. As we are learning from the news stories, the needs of a family with a child with autism vary a great deal from a person who uses a wheelchair. To some, it may seem discouraging to even attempt to meet the needs of those who have different disabilities. How many times I've heard that said.
And yet, I'm here to tell you that it's really quite simple in a way that isn't often discussed. The solution oftentimes is to ask the person with a disability (or, if he or she cannot communicate independently, their family), what is needed to solve the issues that are presented. This needs to be done before matters get to the point where the needs of the community are in conflict with the needs of the person with the disability, before emotions run high, before situations become personalized. Failing to take this step in a timely manner is the number one reason inclusion fails in any given situation. This is why having a disability ministry in every parish is so important. It is only through the acknowledgment that inclusion is a real issue that needs to be addressed that it will be achieved. Let me explain what I mean.
Even though I have a disability, I've learned to recognize that when I'm around friends with other disabilities, I adjust to include them. When I travel with blind friends, I describe our surroundings. When I travel with paraplegic friends, they often assist me. When I'm with friends of short stature, I make sure towels in the bathroom are pulled down by the hotel employees. How did I learn this? By being around them. It is simple, yet clear to me that people with disabilities and those who live around them learn to be resourceful and creative so all are included. This is the role a disability ministry can play in each and every parish. And it's very important that we work toward this goal. Why?
Every one of us desires to be included with a yearning that is so deep, so passionate, so heartfelt that it cannot and should not be dismissed out of hand by another human being. It is because we are all spiritual beings, created equally by God and are meant to be brothers and sisters, living in community, each of us bringing what another cannot. As for inclusion, we can do for each other what we may initially think is impossible because God is present.
What is complex is that we have to redefine what and who is important. This means defying many of the social mores that are so entrenched- our attitudes toward those who we've been taught are less important than us, whose needs don't matter as much, whose presence is seen as a burden. That our time is too important, as Henri Nouwen thought when he first started to help Adam, a man with disabilities, with his daily care at L'Arche, a task that required more patience than he felt he could muster until he understood that there was nothing more important he could be doing than to minister to him, because Adam was God's beloved. Yes, this calls for us to rebel against what we may have unconsciously accepted: that those with disabilities don't belong in our communities, but should be kept out of sight or go "someplace else".
But there is nowhere else to go. That's why we need disability ministries in each parish, not just in each diocese. There is one community of God. We must move toward embracing, not merely tolerating, its members in both our churches and in our society at large.
My Senator and Me
Yesterday I watched Sen Kennedy on the news as his two dogs greeted him when he left the hospital and also saw news clips of him out walking the dogs at his Cape Cod home. (If you'd like to send best wishes online to him, you can do so here.)
What I didn't know is that his Portuguese water dogs, Sunny and Splash, have their own career. They helped the senator write a children's book. It's called My Senator and Me, a "dog's eye view of Washington DC" and is available on amazon. According to reviews, it's a good introduction to teach children about how a bill becomes a law. According to this interview that includes a reading from the book by the Senator, Splash took over during the publicity tour. And it sounds like he can do that from time to time at the Senate too.
Is there anywhere Splash can't go?
The Senate floor. He is a little upset about it. [He opens a copy of the book.] "I know the rules, no dogs allowed on the Senate floor. But I don't like it. I see plenty of senators, and they don't behave any better than I do."
...
Doesn't he get to be something of a distraction?
Not really. [Splash barks and tries to retrieve a tennis ball from under the couch.] But one time [during a committee hearing] we had a roll call, and when we came back, Splash was sitting in the chairman's chair.
How does he behave around other senators?
One time, the caucus went on too long, and Joe Biden and Paul Wellstone were speaking louder and louder. Splash started to bark, so Paul Sarbanes made him an honorary member of our caucus. via Boston.com
[image description: Book cover shown. At the top is the book title My Senator and me with the Capitol shown underneath. An image of Senator Kennedy is at the right and in the forefront is a black shaggy dog with his tongue hanging out happily. At the bottom is the name of the author, the senator.]
Alphabet Meme!
I was tagged by Jean for the Alphabet Meme!
The theme for this meme is that using the 26 letters of the alphabet you will express who you are, what you do, your interests, what matters to you etc….and you have to write it within 26 minutes…
A: Advocacy
B: Blogger
C: Chocolate!
D: Dreamer
E. Energetic
F: Faithful
G: Grateful
H: Hopeful
I: Imaginative
J: Joker
K: Knowledge
L: LadyVols
M: M&Ms
N: Nephews&Niece
O: Ocean
P: Prayer
Q: Questioning
R: Roman Catholic
S: Sci-fi
T: Tennis
U: Ursula LeGuin
V: Vikings, Land of
W: Writer
X: X Men
Y: Yahtzee
Z: Zoom zoom zoom
I'm tagging:
Anyone who wants to do it !
The theme for this meme is that using the 26 letters of the alphabet you will express who you are, what you do, your interests, what matters to you etc….and you have to write it within 26 minutes…
A: Advocacy
B: Blogger
C: Chocolate!
D: Dreamer
E. Energetic
F: Faithful
G: Grateful
H: Hopeful
I: Imaginative
J: Joker
K: Knowledge
L: LadyVols
M: M&Ms
N: Nephews&Niece
O: Ocean
P: Prayer
Q: Questioning
R: Roman Catholic
S: Sci-fi
T: Tennis
U: Ursula LeGuin
V: Vikings, Land of
W: Writer
X: X Men
Y: Yahtzee
Z: Zoom zoom zoom
I'm tagging:
Anyone who wants to do it !
Wednesday, May 21, 2008
Court rules US discriminates against blind with currency
A federal court ruled that the US discriminates against the blind since its paper currency is the same size, no matter what it's value.
and here.
The 2-to-1 decision, by a panel of the United States Court of Appeals for the District of Columbia Circuit, held that the Treasury Department had failed to demonstrate that it would be too burdensome to make bills of different sizes or add features that could be read by touch to distinguish monetary value.
“A large majority of other currency systems have accommodated the visually impaired, and the secretary does not explain why U.S. currency should be any different,” Judge Judith W. Rogers wrote for herself and Judge Thomas B. Griffith, referring to Treasury Secretary Henry M. Paulson Jr., the nominal defendant. via NYTimes.com
and here.
For the birds...
A lost parrot wouldn't talk to the cops, but when taken to the vet, he gave his name and address and was returned to his owners.
He kept mum with the cops, but began chatting after a few days with the vet.
"I'm Mr. Yosuke Nakamura," the bird told the veterinarian, according to Uemura. The parrot also provided his full home address, down to the street number, and even entertained the hospital staff by singing songs. via cnn.com
The owners say they spent two years teaching the bird his name and address.
So why does this remind me of Mickey Rooney in Boystown?
He kept mum with the cops, but began chatting after a few days with the vet.
"I'm Mr. Yosuke Nakamura," the bird told the veterinarian, according to Uemura. The parrot also provided his full home address, down to the street number, and even entertained the hospital staff by singing songs. via cnn.com
The owners say they spent two years teaching the bird his name and address.
So why does this remind me of Mickey Rooney in Boystown?
Tuesday, May 20, 2008
Catholics in China
Someone I know who visited China this past summer told me that she saw construction workers over there and added "I wouldn't want to be in anything that was built" after noting their lack of safety concerns. Even the workers' safety was greatly compromised. They were using bamboo scaffolds at great heights, for example.
We had this conversation before the earthquake and yesterday I asked her again about her visit. Her eyes teared up thinking about the magnitude of what happened over there. Unlike myself, who has never been to China, for her it's a place she's visited, seen and touched.
When I first started this blog, I found out it was blocked in China because it was Catholic and that was a concrete lesson in the extent of the oppression faced by Catholics in China. I've prayed for my Chinese Catholic readers ever since.
I found this article about Catholicism in China by John Allen from the National Catholic Reporter , which discusses the growth of religion in China, including Catholicism and Protestanism and the factors affecting it. China is the third largest Christian nation in the world and, despite the fact that Catholics are still persecuted there, they number 12 million. A Catholic is not an easy thing to be in China - they are divided against each other politically. And as much as Protestanism has grown, Allen discusses reasons why being Catholic in China is so difficult.
The events in China come at us from photos, video clips and news stories and commentaries may seem far away and distant to many of us. Our brothers and sisters whose lives are far more difficult than ours as they try to practice their faith, need our prayers right now, as do all of the Chinese people.
For a list of agencies that are helping with disaster relief, please click here.
We had this conversation before the earthquake and yesterday I asked her again about her visit. Her eyes teared up thinking about the magnitude of what happened over there. Unlike myself, who has never been to China, for her it's a place she's visited, seen and touched.
When I first started this blog, I found out it was blocked in China because it was Catholic and that was a concrete lesson in the extent of the oppression faced by Catholics in China. I've prayed for my Chinese Catholic readers ever since.
I found this article about Catholicism in China by John Allen from the National Catholic Reporter , which discusses the growth of religion in China, including Catholicism and Protestanism and the factors affecting it. China is the third largest Christian nation in the world and, despite the fact that Catholics are still persecuted there, they number 12 million. A Catholic is not an easy thing to be in China - they are divided against each other politically. And as much as Protestanism has grown, Allen discusses reasons why being Catholic in China is so difficult.
The events in China come at us from photos, video clips and news stories and commentaries may seem far away and distant to many of us. Our brothers and sisters whose lives are far more difficult than ours as they try to practice their faith, need our prayers right now, as do all of the Chinese people.
For a list of agencies that are helping with disaster relief, please click here.
Monday, May 19, 2008
Mass confusion: A restraining order and a boy with autism
A court granted a Catholic priest's request for a restraining order against the parents of a 13 year old boy with autism who has been attending the church. Legal documents indicate that the boy struck a girl, urinates and spits while in church, and has almost knocked down elderly parishioners. There were other alleged incidents of unsafe behavior, such as the boy starting two parishioners' cars up after rushing out of Mass into the parking lot, leading to fears that he might run into someone.His mom says that the boy did strike the girl and he is incontinent, but denies that he spits.
A court date has now been set for the violation of the restraining order, since his parents continued to take him to Mass.
The coverage of this story is, to say the least, raising more questions than giving answers. Vague, sensational reporting.
For example, I don't really know what was done to avoid getting to the point where a restraining order was requested, which by all means as a disability advocate I believe should have been avoided. I have read that the priest and others visited the boys' family and discussed alternative arrangements, which were turned down by the family. What were these alternatives and why were they turned down by the family? What steps were taken to address the safety issues before seeking a restraining order? The media coverage falls short as do the court papers which indicate that accommodations were offered.
Legal documents state that: [The] church "explored and offered many options for accommodations that would assist the family while protecting the safety of parishioners. The family refused those offers of accommodation."
The confusion surrounding the facts in this story add to the sensationalism the media is creating around this story. This is a lose-lose for everyone when it's come to this point.
The family is attending a different church and the local sheriff told the press he hopes that this can be resolved in court on June 2. This post discussing the reasons for inclusion is a worthwhile read and a timely one as we pray for the resolution of this difficult situation. You can also find materials on inclusion on the top right of my blog. And, of course, my posts on inclusion at the tags below.
A court date has now been set for the violation of the restraining order, since his parents continued to take him to Mass.
The coverage of this story is, to say the least, raising more questions than giving answers. Vague, sensational reporting.
For example, I don't really know what was done to avoid getting to the point where a restraining order was requested, which by all means as a disability advocate I believe should have been avoided. I have read that the priest and others visited the boys' family and discussed alternative arrangements, which were turned down by the family. What were these alternatives and why were they turned down by the family? What steps were taken to address the safety issues before seeking a restraining order? The media coverage falls short as do the court papers which indicate that accommodations were offered.
Legal documents state that: [The] church "explored and offered many options for accommodations that would assist the family while protecting the safety of parishioners. The family refused those offers of accommodation."
The confusion surrounding the facts in this story add to the sensationalism the media is creating around this story. This is a lose-lose for everyone when it's come to this point.
The family is attending a different church and the local sheriff told the press he hopes that this can be resolved in court on June 2. This post discussing the reasons for inclusion is a worthwhile read and a timely one as we pray for the resolution of this difficult situation. You can also find materials on inclusion on the top right of my blog. And, of course, my posts on inclusion at the tags below.
Martin Sheen honored at Notre Dame
Notre Dame awarded Martin Sheen the school's Laetare Medal for his humanitarian work as a peace activist yesterday at the commencement ceremony. The annual award is conferred on a Catholic annually.
The award is Notre Dame's top honor and is given annually to a Catholic "whose genius has ennobled the arts and sciences, illustrated the ideals of the church, and enriched the heritage of humanity."
"While acting is what I do for a living, activism is what I do to stay alive," Sheen told the crowd during commencement Sunday at Notre Dame. via msnbc.com
[visual description: Sheen is shown at the podium, wearing dark blue and gold trimmed robes.]
Pos or Not
An internet web site that asks viewers to look at photos of people and guess whether they are HIV positive or not, is being hailed in this article as an effort to debunk myths.
It is also being termed possibly the most depressing site on the internet by some. It's aimed to increase awareness by those who equate looks with whether someone is HIV positive or not, it seems. And fear. Does it work to reduce the stigma associated with HIV? I'm not sure.
I realize the educational value of teaching about the risks of HIV, but it's too bad that you don't see a campaign like this for other invisible disabilities done in a way that is positive.
Your thoughts?
It is also being termed possibly the most depressing site on the internet by some. It's aimed to increase awareness by those who equate looks with whether someone is HIV positive or not, it seems. And fear. Does it work to reduce the stigma associated with HIV? I'm not sure.
I realize the educational value of teaching about the risks of HIV, but it's too bad that you don't see a campaign like this for other invisible disabilities done in a way that is positive.
Your thoughts?
Sunday, May 18, 2008
Just a very unfortunate incident...
Words said about a wheelchair user who was killed trying to cross the tracks on the very same day another wheelchair user was saved by a young man in a truck passing by.
So who was Darrell Allsup?
His days were spent with his friends at the offices of Yellow Cab Co. and his afternoons at the east side McDonald's enjoying iced tea.
Allsup will be missed, said Dianna High of Yellow Cab.
"He had no family and we fell in love with him; he was a family member down there (the cab stand). We all loved him," she said. "It's like losing the best cup of coffee you have every day. Nobody who ever met Darrell didn't love him. He was a kind and loving person."
Fernando Bonilla said he knew Allsup for about a decade; he described him as a generous man who gave Bonilla a place to stay when he needed it. via southernillinoisan.com
Allsup was a vet, a sharpshooter who was honorably discharged in 1969.
Yesterday I met my sister at a mall nearby since my power chair can't get into her car. As I was saying goodbye to head home, she looked around and asked "Where's a sidewalk? How can you be safe?"
Sometimes, no matter how careful we want to be, there is simply no place to go in our wheelchairs that is safe if we want to get out and be with those we care about and live our life.
I think as wheelchair users we all share a responsibility to practice safe wheelchair use, but the bottom line is that people will continue to find ways to get around until we make taxis accessible, our roads safer and accessible mass transportation more available and flexible enough to actually be usable. (These incidents are happening right under our nose although they get a lot more media coverage when the person survives and is rescued, I notice.)
h/t Media Dis n Dat
So who was Darrell Allsup?
His days were spent with his friends at the offices of Yellow Cab Co. and his afternoons at the east side McDonald's enjoying iced tea.
Allsup will be missed, said Dianna High of Yellow Cab.
"He had no family and we fell in love with him; he was a family member down there (the cab stand). We all loved him," she said. "It's like losing the best cup of coffee you have every day. Nobody who ever met Darrell didn't love him. He was a kind and loving person."
Fernando Bonilla said he knew Allsup for about a decade; he described him as a generous man who gave Bonilla a place to stay when he needed it. via southernillinoisan.com
Allsup was a vet, a sharpshooter who was honorably discharged in 1969.
Yesterday I met my sister at a mall nearby since my power chair can't get into her car. As I was saying goodbye to head home, she looked around and asked "Where's a sidewalk? How can you be safe?"
Sometimes, no matter how careful we want to be, there is simply no place to go in our wheelchairs that is safe if we want to get out and be with those we care about and live our life.
I think as wheelchair users we all share a responsibility to practice safe wheelchair use, but the bottom line is that people will continue to find ways to get around until we make taxis accessible, our roads safer and accessible mass transportation more available and flexible enough to actually be usable. (These incidents are happening right under our nose although they get a lot more media coverage when the person survives and is rescued, I notice.)
h/t Media Dis n Dat
How gas prices affect volunteer programs and services
I just read a piece about how gas prices are affecting local Meals on Wheels programs because volunteers, some of whom are retired, can't afford to fill their tanks to deliver the meals.
Yesterday I was at a flea market the local rescue/fire squad had and the members were telling me that the price of gas is cutting into their budget and they are in need of more funding for it.
When I watched the movie Hogfather last night about how a villain went after mythical figures like the Tooth Fairy and Hogfather (Santa Claus), I kept thinking about how we have villains like the Variable Rate Mortgage Monster and the Gargantuan Gas Gaffe, who have the power to stop people from doing good deeds.
If you're reading this and you can, please keep in mind your local volunteer programs and services when/if you can donate, like I did. What I gave was minimal but it's better than nothing. I'd hate to see people who have their heart in the right place unable to continue to provide services and programs.
Just sayin'.
The movie was pretty good, by the way. Long. Three hours. But the ending alone is worth it. If you'd like to see it, you'll have to watch the movie. But if you'd like to hear someone else explain what was so special about it, watch this:
Yesterday I was at a flea market the local rescue/fire squad had and the members were telling me that the price of gas is cutting into their budget and they are in need of more funding for it.
When I watched the movie Hogfather last night about how a villain went after mythical figures like the Tooth Fairy and Hogfather (Santa Claus), I kept thinking about how we have villains like the Variable Rate Mortgage Monster and the Gargantuan Gas Gaffe, who have the power to stop people from doing good deeds.
If you're reading this and you can, please keep in mind your local volunteer programs and services when/if you can donate, like I did. What I gave was minimal but it's better than nothing. I'd hate to see people who have their heart in the right place unable to continue to provide services and programs.
Just sayin'.
The movie was pretty good, by the way. Long. Three hours. But the ending alone is worth it. If you'd like to see it, you'll have to watch the movie. But if you'd like to hear someone else explain what was so special about it, watch this:
Saturday, May 17, 2008
It tastes better watching sometimes...
"Can I order this sundae just the way I want it?" my nephew asked.
"Sure, kid," the guy behind the counter said.
"Okay. Vanilla ice cream, soft." Pause. " Chocolate sprinkles on that. Whipped cream on top." Pause. "Rainbow sprinkles on that. And chocolate fudge sauce."
Several minutes later, my nephew lifted his spoon, stopped and said "Look at that. Just look at it." And then he dug in.
"Is it good?"
Through a mouthful of ice cream he said "Beyond good. Fantastic. Awesome. The ultimate sundae."
Love those sundaes that taste better watching someone else eat them.
"Sure, kid," the guy behind the counter said.
"Okay. Vanilla ice cream, soft." Pause. " Chocolate sprinkles on that. Whipped cream on top." Pause. "Rainbow sprinkles on that. And chocolate fudge sauce."
Several minutes later, my nephew lifted his spoon, stopped and said "Look at that. Just look at it." And then he dug in.
"Is it good?"
Through a mouthful of ice cream he said "Beyond good. Fantastic. Awesome. The ultimate sundae."
Love those sundaes that taste better watching someone else eat them.
What she said
I just finished reading an honest and heartfelt post by Elizabeth about some Christians who backed off after she told them she had a terminal diagnosis. She writes about how they avoided her. She writes about how they said they would pray for her and hope for a miracle..and then backed off from her and how hurtful that was. She writes:
I AM a Christian so I have nothing against prayer, it is just I never expected “I’ll pray for you” to be synonymous with, “I am about to sever all communication with you.” And indeed since then I have noticed that for some people, people with ample availability to do more “pray for you” actually came with a pride in their apparent helplessness ("sorry, dedicated to the XXXXX Ministry, I leave this in our loving Father's hands").
For those who don’t know the story of Jesus after “the last supper” Jesus went up to a garden taking with him three of his closest friends. Why? Because he knew he was to be in pain, and soon die and was scared. He went up and prayed, crying and so depressed that he wished to die and when done returned to find his friends….asleep. With a certain anger and desperation he said, “Can’t you even stay awake with me for one hour?” Now THAT, was Jesus’ prayer to his friends. A prayer saying “be with me, comfort me.”
I'm going to go read a book because I can't put it any better than she did.
I AM a Christian so I have nothing against prayer, it is just I never expected “I’ll pray for you” to be synonymous with, “I am about to sever all communication with you.” And indeed since then I have noticed that for some people, people with ample availability to do more “pray for you” actually came with a pride in their apparent helplessness ("sorry, dedicated to the XXXXX Ministry, I leave this in our loving Father's hands").
For those who don’t know the story of Jesus after “the last supper” Jesus went up to a garden taking with him three of his closest friends. Why? Because he knew he was to be in pain, and soon die and was scared. He went up and prayed, crying and so depressed that he wished to die and when done returned to find his friends….asleep. With a certain anger and desperation he said, “Can’t you even stay awake with me for one hour?” Now THAT, was Jesus’ prayer to his friends. A prayer saying “be with me, comfort me.”
I'm going to go read a book because I can't put it any better than she did.
Loveliness of Rosaries ...
..is now up at Just Another Catholic Pondering.
Sarah has written a beautiful post including perspectives and thoughts on the rosary by many contributors for a loveliness fair on the rosaries. Here's what it's about:
Praying the rosary is that moment when we encounter our Sweet Mother on the journey and share a quiet conversation with her. In the month of Our Lady, let's share our stories of her rosary and how it has shaped and formed us on our journey. And let's share the simple loveliness of rosaries themselves.
Check it out. (And Barb has been kind enough to donate a beautiful rosary for some lucky person who leaves a comment.)
Sarah has written a beautiful post including perspectives and thoughts on the rosary by many contributors for a loveliness fair on the rosaries. Here's what it's about:
Praying the rosary is that moment when we encounter our Sweet Mother on the journey and share a quiet conversation with her. In the month of Our Lady, let's share our stories of her rosary and how it has shaped and formed us on our journey. And let's share the simple loveliness of rosaries themselves.
Check it out. (And Barb has been kind enough to donate a beautiful rosary for some lucky person who leaves a comment.)
Friday, May 16, 2008
Hollywood Quad videos - now on sidebar
Meet Jim Troesh aka The Hollywood Quad.
You may remember him as Scotty from Highway to Heaven years ago. Jim's been acting and producing for years now, and his work has gone a long way toward opening doors for actors with disabilities. He's now working on a series that I'd like to help get the word out on called The Hollywood Quad.
I've added video clips of Jim Troesh's Hollywood Quad series to my sidebar- about halfway down....enjoy!
You may remember him as Scotty from Highway to Heaven years ago. Jim's been acting and producing for years now, and his work has gone a long way toward opening doors for actors with disabilities. He's now working on a series that I'd like to help get the word out on called The Hollywood Quad.
I've added video clips of Jim Troesh's Hollywood Quad series to my sidebar- about halfway down....enjoy!
How far is far?
Whenever I run into people (not literally) in my power chair, I'm inevitably asked "Do you know what the price of gas is?"
I nod and say yes.
"But do you realize how expensive it is?" they ask me. And then they get into their car to drive home three blocks.
I often pass them at the traffic light and wave as I hum by.
I'll admit that I'm going green because I can't fit my power chair into my car. But the reality is that, in the same way I can use my chair to get to stores around the corner, other people can walk or bike. I've learned I don't need a car for many things I used to use a car for.
But it's fascinating to watch how people react to walking. Recently a friend and I walked up to a coffee shop. When we got home, she said "That was really far. I don't think I'll ever do that again!" It was only six blocks.
It doesn't do any good to discuss this with her because, inevitably, she says to me "You're sitting down. You don't know how far it is."
I haven't forgotten how far far is by foot, however. I know I've defined it differently over the course of my life. Far seems to get closer as one ages. The further you are from far, the more likely you're fit. However you can redefine far by walking and making far closer again.
Just because I use a power chair doesn't mean I don't know that. It's like babying along old batteries in a piece of mobility equipment. Far is further with old batteries than new ones.
It's still better than the price of gas.
I nod and say yes.
"But do you realize how expensive it is?" they ask me. And then they get into their car to drive home three blocks.
I often pass them at the traffic light and wave as I hum by.
I'll admit that I'm going green because I can't fit my power chair into my car. But the reality is that, in the same way I can use my chair to get to stores around the corner, other people can walk or bike. I've learned I don't need a car for many things I used to use a car for.
But it's fascinating to watch how people react to walking. Recently a friend and I walked up to a coffee shop. When we got home, she said "That was really far. I don't think I'll ever do that again!" It was only six blocks.
It doesn't do any good to discuss this with her because, inevitably, she says to me "You're sitting down. You don't know how far it is."
I haven't forgotten how far far is by foot, however. I know I've defined it differently over the course of my life. Far seems to get closer as one ages. The further you are from far, the more likely you're fit. However you can redefine far by walking and making far closer again.
Just because I use a power chair doesn't mean I don't know that. It's like babying along old batteries in a piece of mobility equipment. Far is further with old batteries than new ones.
It's still better than the price of gas.
Fly among the stars....
Microsoft's World Wide Telescope hit the web recently and I decided to give it a try, although the computer specs looked as if I might fall short.
It worked fine with 1GB RAM and Windows XP software. It's an impressive piece of work that includes the ability to look at planets, constellations and even includes film clips to teach basic astronomy concepts to help newbies get oriented.
My first reaction was not much different than my visit to a planetarium on a class trip when I was 8. I remember sitting there, looking up at the ceiling and saying "Wow!" and realizing for the first time how much more was out there beyond Earth.
World Wide Telescope is more high tech and more immediate an experience. It fills your computer screen with images of the sky, if you choose that view, and you can zoom from constellation to constellation, zoom in and out at will, and click on other related information.
It allows you to control a planetarium. If any one ever dreamed of being an astronaut or wants to fly around the universe, this is the program for you. Show it to your children. It's a great teaching tool combined with a built-in 'awe' factor.
It worked fine with 1GB RAM and Windows XP software. It's an impressive piece of work that includes the ability to look at planets, constellations and even includes film clips to teach basic astronomy concepts to help newbies get oriented.
My first reaction was not much different than my visit to a planetarium on a class trip when I was 8. I remember sitting there, looking up at the ceiling and saying "Wow!" and realizing for the first time how much more was out there beyond Earth.
World Wide Telescope is more high tech and more immediate an experience. It fills your computer screen with images of the sky, if you choose that view, and you can zoom from constellation to constellation, zoom in and out at will, and click on other related information.
It allows you to control a planetarium. If any one ever dreamed of being an astronaut or wants to fly around the universe, this is the program for you. Show it to your children. It's a great teaching tool combined with a built-in 'awe' factor.
Thursday, May 15, 2008
Tennis players don't quit, they retire
Yesterday Justine Henin retired from tennis. She's 25 years old.
She said she was no longer playing at the top of her game and needed to move on in her life, but her announcement stunned the tennis world. Some say she's quitting. I know better. I didn't quit tennis - I retired. And so has she.
Unlike my retirement from wheelchair tennis, people actually know she's retired. I don't envy her. I was able to roll quietly away from the court, stow away the duct tape and my tennis rackets and escape any comment or scrutiny.
It's not easy, no matter what people say. I wonder how Justine will feel when certain times of the year come around. For me, spring meant upping my training, preparing for the first tournament down in Lancaster PA. It meant sending my tennis wheelchair to the shop so the tires could be trued, fixing ripped upholstery and packing a travel bag I could use all spring, summer and fall.
It also meant I was going to see my tennis friends. I can still do that, although I've learned it's not the same. I miss the sound of tennis balls, the smell of tennis balls and even the humor that tennis balls brought into my life.
Do you realize how inane it is to attempt to hit a tennis ball across the entire length of a court when you have quadriplegia? Do you realize what a rush it is when you find out there are ways to make that happen?
But- oh - the comedy involved when two beginning quads play each other! And then, after practicing, the beauty is stunning.
You can't quit from that. You wouldn't. Only the word retire works, because once a tennis player, you'll always be a tennis player.
[visual image: Two male wheelchair tennis players hug each other over a net on a tennis court.]
She said she was no longer playing at the top of her game and needed to move on in her life, but her announcement stunned the tennis world. Some say she's quitting. I know better. I didn't quit tennis - I retired. And so has she.
Unlike my retirement from wheelchair tennis, people actually know she's retired. I don't envy her. I was able to roll quietly away from the court, stow away the duct tape and my tennis rackets and escape any comment or scrutiny.
It's not easy, no matter what people say. I wonder how Justine will feel when certain times of the year come around. For me, spring meant upping my training, preparing for the first tournament down in Lancaster PA. It meant sending my tennis wheelchair to the shop so the tires could be trued, fixing ripped upholstery and packing a travel bag I could use all spring, summer and fall.
It also meant I was going to see my tennis friends. I can still do that, although I've learned it's not the same. I miss the sound of tennis balls, the smell of tennis balls and even the humor that tennis balls brought into my life.
Do you realize how inane it is to attempt to hit a tennis ball across the entire length of a court when you have quadriplegia? Do you realize what a rush it is when you find out there are ways to make that happen?
But- oh - the comedy involved when two beginning quads play each other! And then, after practicing, the beauty is stunning.
You can't quit from that. You wouldn't. Only the word retire works, because once a tennis player, you'll always be a tennis player.
[visual image: Two male wheelchair tennis players hug each other over a net on a tennis court.]
Sometimes blogging reminds me of....
...the running scenes in Forrest Gump.
Maybe if Forrest had a blog, he wouldn't have run after Jenny died. I don't know.
My first blog ended suddenly, just like Forrest's running. I woke up one day and decided it was time to start a new one.
I wasn't sure what Wheelie Catholic was going to be about. Content wasn't ever an issue, however- what became an issue was which content to put in. There was - and continues to be- a wealth of topics to discuss. I found that Catholics were receptive to the idea of a blog where parents, people with disabilities, and other members of the church could find information or discuss topics. I began receiving emails from readers with disabilities on disability topics (much like those running after Forrest) asking for information on topics and/or relating to what I was writing.
I've found that there's a lot to be said for Forrest's technique, where you just keep running, no matter what's going on around you. Even on days when you're tired, things around you seem to be falling apart, or other distractions jump up in your face, there's merit to acknowledging that - hey, that's life. Keep blogging.
I think people ran after Forrest because he kept running. He kept moving. That was the thing that attracted them. They wanted to see where he was going. But it wasn't about the destination. It was about the journey.
I saw the film August Rush last night. It had more plot holes in it than a piece of Swiss cheese. But when it was over, the movie still sent its message. In fact, the more implausible it became, the less I began to care. There was no point in trying to make it plausible, I thought. Why begin now? Tying up the loose ends would have added to the implausibility.
I read that when writing fiction the best thing to do is choose what's least likely to happen next. I understand that approach in certain genres, but if you're writing character-driven scenes, there's that urge to give a favorite character what she wants. As Hemingway said, if you're a good enough writer, you can get your reader to buy into what you create, accept your story as truth. I think that has more to do with good fiction than anything else. If the reader cares what happens to the characters, then implausible events might be excused - even a character running without having a destination.
Blogging through implausible events is important.
Maybe if Forrest had a blog, he wouldn't have run after Jenny died. I don't know.
My first blog ended suddenly, just like Forrest's running. I woke up one day and decided it was time to start a new one.
I wasn't sure what Wheelie Catholic was going to be about. Content wasn't ever an issue, however- what became an issue was which content to put in. There was - and continues to be- a wealth of topics to discuss. I found that Catholics were receptive to the idea of a blog where parents, people with disabilities, and other members of the church could find information or discuss topics. I began receiving emails from readers with disabilities on disability topics (much like those running after Forrest) asking for information on topics and/or relating to what I was writing.
I've found that there's a lot to be said for Forrest's technique, where you just keep running, no matter what's going on around you. Even on days when you're tired, things around you seem to be falling apart, or other distractions jump up in your face, there's merit to acknowledging that - hey, that's life. Keep blogging.
I think people ran after Forrest because he kept running. He kept moving. That was the thing that attracted them. They wanted to see where he was going. But it wasn't about the destination. It was about the journey.
I saw the film August Rush last night. It had more plot holes in it than a piece of Swiss cheese. But when it was over, the movie still sent its message. In fact, the more implausible it became, the less I began to care. There was no point in trying to make it plausible, I thought. Why begin now? Tying up the loose ends would have added to the implausibility.
I read that when writing fiction the best thing to do is choose what's least likely to happen next. I understand that approach in certain genres, but if you're writing character-driven scenes, there's that urge to give a favorite character what she wants. As Hemingway said, if you're a good enough writer, you can get your reader to buy into what you create, accept your story as truth. I think that has more to do with good fiction than anything else. If the reader cares what happens to the characters, then implausible events might be excused - even a character running without having a destination.
Blogging through implausible events is important.
David vs. Goliath...
I mean David vs. David....on American Idol finals, that is. It's down to the last two and either one would make a great winner. But here's my favorite:
Wednesday, May 14, 2008
Mixed Messages
a new short story over at A Different Light
When 16 year old Ray takes a summer job to learn to be a mason, his experiences one afternoon change the direction of his life
Young Adult/Adult
When 16 year old Ray takes a summer job to learn to be a mason, his experiences one afternoon change the direction of his life
Young Adult/Adult
"I suspect that you will not hear from many of my fellow caregivers directly ... simply because they do not have the resources to take time away from their loved ones in order to come before you."
Former Supreme Court Justice Sandra Day O'Connor, while testifying on Alzheimers and how it has affected her family since her husband's diagnosis before Congress
Former Supreme Court Justice Sandra Day O'Connor, while testifying on Alzheimers and how it has affected her family since her husband's diagnosis before Congress
Waving at Jackie O....
This video tells the tale of a couple and Jackie O.
It's an interesting and amusing story about perception and recall from different points of view.
h/t to Drawn
Talk To Me
Rachael has some things she'd like to say about assumptions people make about disability, some of which happen because people don't talk to her and only see the disability.
Which leads to incidents assuming she doesn't have her own mind, like when she asked for a tatoo.
And a young poet receives a computer so she can compose independently via eye movements, thanks to a Swedish company.
Tuesday, May 13, 2008
When life doesn't resemble fiction...
In a Charlies' Angels move, actress Drew Barrymore chased down a hit and run driver who slammed into her car yesterday. (She wasn't injured in the accident.) Barrymore was able to provide police with the car's license plate number. I also remembered the movie Barrymore did about 50 First Dates yesterday, where an amnesia patient kept having to be reminded every day of who she was, where she was and all the other details of her life.
It was because I was reading a short story in a scifi magazine dealing with a plot line of a doctor being asked by a colleague to hire a young woman who was institutionalized due to the same kind of amnesia so she could live in the community. Although I haven't finished reading the story yet, I was struck by the doctor's response when asked: How will I watch out for her? How will I protect her from others who will exploit her?
People won't find out, the other doctor assured her. No one can tell by looking. After all, she's smart and she's good looking so it would be a shame for her to stay in the institution - and you wouldn't know about this condition...
This dialog, like many other fictional works I read, reflects our society's values and mores. Since no one can see her disability, she can manage to function is the assumption reflected here. Other assumptions: if she is pretty, if she is smart, in other words, if she has other superlative qualities, then she deserves to live in the community. The doctor even says that, for those reasons, it would be a shame for her to remain institutionalized.
I'd like to address these assumptions:
-I find the assumption that people with disabilities somehow need to have a superlative quality to live in the community as insulting and degrading to the concept of human dignity. After all, we don't ask able bodied people to pass a "pretty" test, do we? ::Looking around::: uh, no.
-It is sometimes true that there are some people who do exploit those with disabilities, but I tend to think that many of them are the same people who exploit their fellow human beings in general. There are many people who don't. And part of the problem with seeing only the vulnerability of those with disabilities is that it is used as an excuse to limit their freedom.
Far too often, I'm confronted by an attitude that says to me: You shouldn't be alone ever. When I traveled for wheelchair tennis, others staying in the hotel would ask if I was afraid. I asked them if they were afraid. Bad plumbing? Possibly. Someone breaking into the room to take advantage of me? Heck, my roomie and I had more hardware available to defend our honor than they did. We survived an earthquake in California, a few hurricanes and even a hotel fire, by the way.
Now I'm not talking about exercising reasonable caution. All of us need to be mindful, including those of us with disabilities, about safety issues. I happen to think that using my power chair at night on a dark road would be foolhardy and don't do it, for example. I also wouldn't walk around at night by myself if I was able bodied. But the overlap in choices I make based on whether I have a disability or not isn't as clear as some might think.
In other words, I don't wake up in the morning and ask myself "Okay what can't I do because I have quadriplegia?" It's not like that. My life isn't dramatic. It's downright boring some days just like everyone else's. I work, I watch TV, I eat, I hassle Meredith - well you get the idea. I do have attendant care. But I'm not the only one in society who depends on physical care done by others. Some able bodied people choose to hire personal assistants who do a myriad of tasks.
What truly bothers me with these assumptions is that they float around us and our lives, often unconscious. And, meanwhile, we lose opportunities for common ground.
Oh and Drew? That was a bit dangerous to do, although I admire your spirit.
It was because I was reading a short story in a scifi magazine dealing with a plot line of a doctor being asked by a colleague to hire a young woman who was institutionalized due to the same kind of amnesia so she could live in the community. Although I haven't finished reading the story yet, I was struck by the doctor's response when asked: How will I watch out for her? How will I protect her from others who will exploit her?
People won't find out, the other doctor assured her. No one can tell by looking. After all, she's smart and she's good looking so it would be a shame for her to stay in the institution - and you wouldn't know about this condition...
This dialog, like many other fictional works I read, reflects our society's values and mores. Since no one can see her disability, she can manage to function is the assumption reflected here. Other assumptions: if she is pretty, if she is smart, in other words, if she has other superlative qualities, then she deserves to live in the community. The doctor even says that, for those reasons, it would be a shame for her to remain institutionalized.
I'd like to address these assumptions:
-I find the assumption that people with disabilities somehow need to have a superlative quality to live in the community as insulting and degrading to the concept of human dignity. After all, we don't ask able bodied people to pass a "pretty" test, do we? ::Looking around::: uh, no.
-It is sometimes true that there are some people who do exploit those with disabilities, but I tend to think that many of them are the same people who exploit their fellow human beings in general. There are many people who don't. And part of the problem with seeing only the vulnerability of those with disabilities is that it is used as an excuse to limit their freedom.
Far too often, I'm confronted by an attitude that says to me: You shouldn't be alone ever. When I traveled for wheelchair tennis, others staying in the hotel would ask if I was afraid. I asked them if they were afraid. Bad plumbing? Possibly. Someone breaking into the room to take advantage of me? Heck, my roomie and I had more hardware available to defend our honor than they did. We survived an earthquake in California, a few hurricanes and even a hotel fire, by the way.
Now I'm not talking about exercising reasonable caution. All of us need to be mindful, including those of us with disabilities, about safety issues. I happen to think that using my power chair at night on a dark road would be foolhardy and don't do it, for example. I also wouldn't walk around at night by myself if I was able bodied. But the overlap in choices I make based on whether I have a disability or not isn't as clear as some might think.
In other words, I don't wake up in the morning and ask myself "Okay what can't I do because I have quadriplegia?" It's not like that. My life isn't dramatic. It's downright boring some days just like everyone else's. I work, I watch TV, I eat, I hassle Meredith - well you get the idea. I do have attendant care. But I'm not the only one in society who depends on physical care done by others. Some able bodied people choose to hire personal assistants who do a myriad of tasks.
What truly bothers me with these assumptions is that they float around us and our lives, often unconscious. And, meanwhile, we lose opportunities for common ground.
Oh and Drew? That was a bit dangerous to do, although I admire your spirit.
A blogger asks: How do we build community?
The "reason" given for exclusion varies from place to place. Inclusion, it seems, is illusion, even in 2008 in America today.
Fear and loathing are probably the main motivations for excluding individuals. The idea that we may have to consider the feelings of someone different from self is startling to us. It immediately raises to our consciousness our own bias. Something we don't want to acknowledge, or be associated with. Do we prefer "Out of sight, out of mind?"
But a group, City, State or Country is handicapped when not all of its individuals are considered members of the community, much less respected members of the community. The issue then, and which we have been skirting for a long time, is "Who should be members of the community, and how do we respect this commitment?"
How do we build community. How do we value community? How do we open ourselves to the views of others, whom we have learned to ignore, scorn, and speak with contempt about?
Yes, indeed, this is the question. How do we build community?
Read the rest of this important post at from the port.
A NY Times piece features a story about seriously ill and disabled children and a doctor estimates that 70% of those he sees could wind up institutionalized in nursing homes after the age of eighteen based on the present resources and community care.
Institutionalizing those with disabilities, rather than having alternative community care as children and their parents who care for them age, takes them out of our community. This is one of the main reasons that community care, which is less expensive, is being sought on a wider scale by disability advocates and is supported by the USCCB.
Part of building community is accepting that, although our lives may look different to each other, the things that give us meaning and a sense of purpose are the same. Until we do that and embrace the diversity that occurs among human beings, an "out of sight, out of mind" exclusionary attitude will continue to be reflected in our social policies.
In this 2005 letter, the USCCB writes in support of legislation to help attain the goal of community living:
On behalf of the United States Conference of Catholic Bishops, the Catholic Health Association of the United States, and the National Catholic Partnership on Disability, we are writing to thank you and express our support for your legislation, the Medicaid Community-Based Attendant Services and Supports Act of 2005 (MiCASSA), S. 401/H.R. 910.
Our faith calls us to work for the full inclusion of all persons with disabilities in society and in the Church. This is rooted in the earthly ministry of Jesus, whose deep concern for the sick and for the men and women with disabilities he encountered is clear in the New Testament. Throughout history, the Church has followed Jesus’ example through its diverse healing ministry, seen today in the Catholic health care facilities, community health clinics and Catholic charities agencies that serve millions and millions of people in our country.
In recent decades, our Church has come to a greater understanding of the needs of our brothers and sisters with disabilities. In 1978, the bishops issued their Pastoral Statement on People with Disabilities. In that statement, the bishops called upon all people of good will to work with people with disabilities to improve their living conditions and ensure that each individual is able to achieve the fullest measure of personal development of which he or she is capable.
It is in that spirit that we are pleased to support MiCASSA. With the services that MiCASSA would make available, more people with disabilities will be able to move from institutional care to lives of independence in their communities. The legislation will give them the choices and control over their lives they deserve. It will also increase the ability of people with disabilities to fulfill the duty we all share, to contribute to the common good through work, service and participation in community life.
via USCCB site
To read more about MiCASSA, go here.
Fear and loathing are probably the main motivations for excluding individuals. The idea that we may have to consider the feelings of someone different from self is startling to us. It immediately raises to our consciousness our own bias. Something we don't want to acknowledge, or be associated with. Do we prefer "Out of sight, out of mind?"
But a group, City, State or Country is handicapped when not all of its individuals are considered members of the community, much less respected members of the community. The issue then, and which we have been skirting for a long time, is "Who should be members of the community, and how do we respect this commitment?"
How do we build community. How do we value community? How do we open ourselves to the views of others, whom we have learned to ignore, scorn, and speak with contempt about?
Yes, indeed, this is the question. How do we build community?
Read the rest of this important post at from the port.
A NY Times piece features a story about seriously ill and disabled children and a doctor estimates that 70% of those he sees could wind up institutionalized in nursing homes after the age of eighteen based on the present resources and community care.
Institutionalizing those with disabilities, rather than having alternative community care as children and their parents who care for them age, takes them out of our community. This is one of the main reasons that community care, which is less expensive, is being sought on a wider scale by disability advocates and is supported by the USCCB.
Part of building community is accepting that, although our lives may look different to each other, the things that give us meaning and a sense of purpose are the same. Until we do that and embrace the diversity that occurs among human beings, an "out of sight, out of mind" exclusionary attitude will continue to be reflected in our social policies.
In this 2005 letter, the USCCB writes in support of legislation to help attain the goal of community living:
On behalf of the United States Conference of Catholic Bishops, the Catholic Health Association of the United States, and the National Catholic Partnership on Disability, we are writing to thank you and express our support for your legislation, the Medicaid Community-Based Attendant Services and Supports Act of 2005 (MiCASSA), S. 401/H.R. 910.
Our faith calls us to work for the full inclusion of all persons with disabilities in society and in the Church. This is rooted in the earthly ministry of Jesus, whose deep concern for the sick and for the men and women with disabilities he encountered is clear in the New Testament. Throughout history, the Church has followed Jesus’ example through its diverse healing ministry, seen today in the Catholic health care facilities, community health clinics and Catholic charities agencies that serve millions and millions of people in our country.
In recent decades, our Church has come to a greater understanding of the needs of our brothers and sisters with disabilities. In 1978, the bishops issued their Pastoral Statement on People with Disabilities. In that statement, the bishops called upon all people of good will to work with people with disabilities to improve their living conditions and ensure that each individual is able to achieve the fullest measure of personal development of which he or she is capable.
It is in that spirit that we are pleased to support MiCASSA. With the services that MiCASSA would make available, more people with disabilities will be able to move from institutional care to lives of independence in their communities. The legislation will give them the choices and control over their lives they deserve. It will also increase the ability of people with disabilities to fulfill the duty we all share, to contribute to the common good through work, service and participation in community life.
via USCCB site
To read more about MiCASSA, go here.
Rosary Hands...
We met in the tiny chapel at the retreat center to say the rosary together, an assorted group of women Catholics- some living with terminal illness, others with disability, others there to support them as nurses, clergy members, family members and loved ones at the Genessaret Retreat.
I was there as a staff member. The woman next to me shared her rosary when she realized I couldn't hold one due to my quadriplegia. We exchanged a smile.
Around the room, I saw womens' hands holding rosaries -
hands that
welcomed everyone to the retreat,
put together bags containing prayers and cards,
cut up food for others ,
stroked the cheeks of those who wept,
reached out to dance at the party,
and now
held rosary beads, fingers gliding over each bead as a voice raised in prayer was followed in unison.
They were the most beautiful hands I'd ever seen. Hands used in service, reaching out like the hand of the Lord to those in need of comfort, reassurance. Hands that rarely stopped moving, except now to pause in prayer.
It was the first time I really had a chance to see those hands still. It was a Martha/Mary moment.
And, perhaps, the first time I truly understood the difference.
I was there as a staff member. The woman next to me shared her rosary when she realized I couldn't hold one due to my quadriplegia. We exchanged a smile.
Around the room, I saw womens' hands holding rosaries -
hands that
welcomed everyone to the retreat,
put together bags containing prayers and cards,
cut up food for others ,
stroked the cheeks of those who wept,
reached out to dance at the party,
and now
held rosary beads, fingers gliding over each bead as a voice raised in prayer was followed in unison.
They were the most beautiful hands I'd ever seen. Hands used in service, reaching out like the hand of the Lord to those in need of comfort, reassurance. Hands that rarely stopped moving, except now to pause in prayer.
It was the first time I really had a chance to see those hands still. It was a Martha/Mary moment.
And, perhaps, the first time I truly understood the difference.
A Modern Day Good Samaritan
A 20 year old man saved a woman's life when her wheelchair became stuck on railroad tracks in Lodi, California.
[Her] frightening ordeal began as she was on her way home from a gathering on the other side of town about 10 p.m. She was heading west on Locust street in her motorized wheelchair and approached the Union Pacific tracks, a route she typically takes.
She could hear the train coming from the south, but Jones said she thought she was still a block away from the tracks, so she kept going, expecting to have to stop and wait until the train passed.
Instead, her wheels buckled underneath her as she crossed, ejecting her from the chair, she said. She looked up as she lay on the tracks.
"I saw the flashing lights of the train, and I just knew I was going to die," Jones said. via recordnet.com
Seeing this in the rearview mirror of his truck after passing her, he ran back, pulled her out of chair and then jumped out of the way of the flying debris as the train struck the wheelchair. This video demonstrates what happened.
So what does he have to say about it? That he was glad to have an opportunity to save someone's life because we don't get a chance to do it that often.
The woman simply called him her angel.
***
That's the story covered on CNN and mainstream media. Here's the other side of the story:
Because of a lack of accessible transportation, more people using wheelchairs are using them as cars. This creates safety issues, especially when used on busy roads, at railroad crossings and other surfaces that may be designed safely for vehicles, but not wheelchairs.
And it goes back to the politics of mobility.
And why should all of us care about this "other" story?
Because, as my friend Greg writes, disability doesn't discriminate.
[Her] frightening ordeal began as she was on her way home from a gathering on the other side of town about 10 p.m. She was heading west on Locust street in her motorized wheelchair and approached the Union Pacific tracks, a route she typically takes.
She could hear the train coming from the south, but Jones said she thought she was still a block away from the tracks, so she kept going, expecting to have to stop and wait until the train passed.
Instead, her wheels buckled underneath her as she crossed, ejecting her from the chair, she said. She looked up as she lay on the tracks.
"I saw the flashing lights of the train, and I just knew I was going to die," Jones said. via recordnet.com
Seeing this in the rearview mirror of his truck after passing her, he ran back, pulled her out of chair and then jumped out of the way of the flying debris as the train struck the wheelchair. This video demonstrates what happened.
So what does he have to say about it? That he was glad to have an opportunity to save someone's life because we don't get a chance to do it that often.
The woman simply called him her angel.
***
That's the story covered on CNN and mainstream media. Here's the other side of the story:
Because of a lack of accessible transportation, more people using wheelchairs are using them as cars. This creates safety issues, especially when used on busy roads, at railroad crossings and other surfaces that may be designed safely for vehicles, but not wheelchairs.
And it goes back to the politics of mobility.
And why should all of us care about this "other" story?
Because, as my friend Greg writes, disability doesn't discriminate.
Kindle review: update on NowNow
When I reviewed the Kindle for the first time, I intended to update on the experimental features, one of which is called NowNow - you can ask questions of the staff and they send an answer within ten minutes according to the description in some places.
I asked who hosted Saturday Night Live the most. There was a delay in receiving answers, which could have been attributed to a number of factors, which I discussed in my review. But here's a glitch that's annoying: I'm getting numerous daily answers weeks later on the same question. The same answers and they go to my email box and my Kindle .
Steve Martin. Steve Martin. Steve Martin. Ok already. Maybe that's why they call it NowNow. Repeat. Repeat.
To read my initial review of the Kindle, please click on the label below.
I asked who hosted Saturday Night Live the most. There was a delay in receiving answers, which could have been attributed to a number of factors, which I discussed in my review. But here's a glitch that's annoying: I'm getting numerous daily answers weeks later on the same question. The same answers and they go to my email box and my Kindle .
Steve Martin. Steve Martin. Steve Martin. Ok already. Maybe that's why they call it NowNow. Repeat. Repeat.
To read my initial review of the Kindle, please click on the label below.
Monday, May 12, 2008
Blogging pundits
..is when so-called experts about disability (are there any? I've never met one) analyze the blogs of those with disabilities- right online in their blogs. It usually happens after I've participated in a group blogging event and someone feels the need to sum up their experience about reading our diverse and varied posts from an expert point of view.
It feels objectifying.
Can't stop folks from doing it. Just sayin'.
It's very different than when people link to a post and talk about it. It's when they (appear to) take an expert POV about ALL the participants, lumping everyone together. In my not so humble opinion, not only is their analysis wrong, but it's usually incomplete- and misses the point of much of what our blogs are about.
Why? Well take one post off of anyone's blog out of hundreds and how much do you know about that blogger? And then to compound that error by making conclusions about diverse groups of bloggers - well, I guess either people will agree or not with what I'm saying.
But there is also the fact that blogging is not a static activity. I blog, I read comments, I blog again- I read other peoples' blogs. Think of it like a water cooler. Opinions change because we are in the process of being (I hope!) It's a dynamic process. I just hate to see it reduced down to generalizations from the reading of one, two, three posts of a few bloggers.
Of course, the reality in this world is there are more pundits than the people they talk about. So maybe in a way, it's flattery.
Ack, I could do without it.
But as Sartre said: Everything has been figured out, except how to live.
It feels objectifying.
Can't stop folks from doing it. Just sayin'.
It's very different than when people link to a post and talk about it. It's when they (appear to) take an expert POV about ALL the participants, lumping everyone together. In my not so humble opinion, not only is their analysis wrong, but it's usually incomplete- and misses the point of much of what our blogs are about.
Why? Well take one post off of anyone's blog out of hundreds and how much do you know about that blogger? And then to compound that error by making conclusions about diverse groups of bloggers - well, I guess either people will agree or not with what I'm saying.
But there is also the fact that blogging is not a static activity. I blog, I read comments, I blog again- I read other peoples' blogs. Think of it like a water cooler. Opinions change because we are in the process of being (I hope!) It's a dynamic process. I just hate to see it reduced down to generalizations from the reading of one, two, three posts of a few bloggers.
Of course, the reality in this world is there are more pundits than the people they talk about. So maybe in a way, it's flattery.
Ack, I could do without it.
But as Sartre said: Everything has been figured out, except how to live.
Power dodge ball
My nephews and I went to the park yesterday and someone had left a big plastic ball there so we decided to go on the basketball court and have a game of dodge ball.
"Don't throw the ball too hard at Aunt Ruthie," my older nephew told my younger one.
Right, I thought, already scheming up ways to beat them. Hehe.
So we formed into teams and my younger nephew tossed the ball at my older nephew, hitting him squarely in the hip. When he got the ball back, he went to toss it at me, but to his surprise, I wasn't playing dodgeball, I was playing power dodgeball - and making a power play.
In other words, I was heading full blast toward him over the line.
He began to laugh so hard that he dropped the ball. I cheered.
"I won," I said.
"Not fair," my younger nephew said. "You have an advantage because you have a power chair."
Power dodge ball. An empowering sport.
"Don't throw the ball too hard at Aunt Ruthie," my older nephew told my younger one.
Right, I thought, already scheming up ways to beat them. Hehe.
So we formed into teams and my younger nephew tossed the ball at my older nephew, hitting him squarely in the hip. When he got the ball back, he went to toss it at me, but to his surprise, I wasn't playing dodgeball, I was playing power dodgeball - and making a power play.
In other words, I was heading full blast toward him over the line.
He began to laugh so hard that he dropped the ball. I cheered.
"I won," I said.
"Not fair," my younger nephew said. "You have an advantage because you have a power chair."
Power dodge ball. An empowering sport.
Sunday, May 11, 2008
Novel no-no's
I'm reading How Not to Write a Novel: 200 Classic Mistakes and How to Avoid Them--A Misstep-by-Misstep Guide (Paperback)
by Howard Mittelmark (Author), Sandra Newman (Author)
Yes, dear blog readers, I'm actually studying the craft which I hope will spare future editors *some* of the mistakes that, although obvious to readers, are not as obvious apparently to writers. This book has made me laugh out loud at times and blush at others. In fact, since it's written by those who have spent many years rejecting books for mistakes that could have been fixed, my theory is that it's worth a read. Or two. I warn you, however, that it is written with a humorous attitude that takes no hostages so if you're of the sensitive bent, you might not like it. However, if you're that sensitive, you probably don't want to deal with rejection slips either.
Some are obvious mistakes and others may not be. Mistakes such as: plots that forget cell phones exist. If the character doesn't have one and the plot is set in the present, you better explain why. Writing styles that are redundant, sound like an inventory, or work only to flaunt the writer's vocabulary at the sake of taking away from the book are discussed. Making villains ALL bad, which results in cardboard characterization. How not to write dialog. And on and on.
I've also found some great software programs that help organize writing. PowerWrite and Power Structure for PC and I'm checking out Scrivener for Mac which is a powerful, affordable program that appeals to me since it has a virtual corkboard and timeline as well as the ability to look at several screens at once to check research or edit related passages for those domino plot changes - when you change one thing and it affects five others. I used to use index cards but these software programs provide accessible and virtual forms of organization that are very helpful.
So why do I want to do this? I don't know!!!! (oops too many exclamation points)
I've already written a few novels, one of which Meredith really likes, although I feel I've moved on from the Voice Of That Character (too many caps).
My next character could be an elf, a dragon - or another human. Anybody. Just not cats, they warn, unless it's your main character. And if you do have to write about a cat, don't give it a two word name. Like Mister Fluffy. No, not good.
Which blows the idea I had of an undercover feline. Investigator Underfoot? No, huh?
by Howard Mittelmark (Author), Sandra Newman (Author)
Yes, dear blog readers, I'm actually studying the craft which I hope will spare future editors *some* of the mistakes that, although obvious to readers, are not as obvious apparently to writers. This book has made me laugh out loud at times and blush at others. In fact, since it's written by those who have spent many years rejecting books for mistakes that could have been fixed, my theory is that it's worth a read. Or two. I warn you, however, that it is written with a humorous attitude that takes no hostages so if you're of the sensitive bent, you might not like it. However, if you're that sensitive, you probably don't want to deal with rejection slips either.
Some are obvious mistakes and others may not be. Mistakes such as: plots that forget cell phones exist. If the character doesn't have one and the plot is set in the present, you better explain why. Writing styles that are redundant, sound like an inventory, or work only to flaunt the writer's vocabulary at the sake of taking away from the book are discussed. Making villains ALL bad, which results in cardboard characterization. How not to write dialog. And on and on.
I've also found some great software programs that help organize writing. PowerWrite and Power Structure for PC and I'm checking out Scrivener for Mac which is a powerful, affordable program that appeals to me since it has a virtual corkboard and timeline as well as the ability to look at several screens at once to check research or edit related passages for those domino plot changes - when you change one thing and it affects five others. I used to use index cards but these software programs provide accessible and virtual forms of organization that are very helpful.
So why do I want to do this? I don't know!!!! (oops too many exclamation points)
I've already written a few novels, one of which Meredith really likes, although I feel I've moved on from the Voice Of That Character (too many caps).
My next character could be an elf, a dragon - or another human. Anybody. Just not cats, they warn, unless it's your main character. And if you do have to write about a cat, don't give it a two word name. Like Mister Fluffy. No, not good.
Which blows the idea I had of an undercover feline. Investigator Underfoot? No, huh?
Across the Universe
I saw this movie last night, which is complete with Beatles music and a strong antiwar message. No review from me on this one. I'm still digesting it emotionally.
This song montage from Let It Be also shows the violence from the riots in the streets of Detroit.
This clip is for mothers who have lost sons and daughters to violence abroad - and on our streets. And for all their other loved ones.
Happy Mother's Day
Meet Jeanette. Jeanette is the proud mother of Raymond, a young man with a disability living independently thanks to daily supports—help with meals, dressing, medications, mobility, etc.—from Direct Support Professionals. View this clip to hear one mother's story about how Direct Support Professionals are improving the quality of life for millions of Americans with disabilities and their families.
Happy Mother's Day to mothers everywhere and all those who dedicate their lives to the important work of supporting those of us with disabilities as direct support professionals.
Saturday, May 10, 2008
Was Shakespeare Catholic?
A new book by Joseph Pearce posits that he was, and that since Shakespeare avoided the fate of many of his friends who were Catholic and were persecuted, he hid his faith. Noting how elusive a figure Shakespeare is in history, the book description reads:
The Quest for Shakespeare claims that books about the Bard have got him totally wrong. They misread the man and misread the work. The true Shakespeare has eluded the grasp of the critics. Dealing with the facts of Shakespeare’s life and times, Pearce's quest leads to the inescapable conclusion that Shakespeare was a believing Catholic living in very anti-Catholic times.
Many of his friends and family were persecuted, and even executed, for their Catholic faith. And yet he seems to have avoided any notable persecution himself. How did he do this? How did he respond to the persecution of his friends and family? What did he say about the dreadful and intolerant times in which he found himself? The Quest for Shakespeare answers these questions in ways that will enlighten and astonish those who love Shakespeare’s work, and that will shock and outrage many of his critics
[Update: Just saw a review of Pearce's book Literary Giants, Literary Catholics over at the Curt Jester so am adding that!]
The Quest for Shakespeare claims that books about the Bard have got him totally wrong. They misread the man and misread the work. The true Shakespeare has eluded the grasp of the critics. Dealing with the facts of Shakespeare’s life and times, Pearce's quest leads to the inescapable conclusion that Shakespeare was a believing Catholic living in very anti-Catholic times.
Many of his friends and family were persecuted, and even executed, for their Catholic faith. And yet he seems to have avoided any notable persecution himself. How did he do this? How did he respond to the persecution of his friends and family? What did he say about the dreadful and intolerant times in which he found himself? The Quest for Shakespeare answers these questions in ways that will enlighten and astonish those who love Shakespeare’s work, and that will shock and outrage many of his critics
The Quest for Shakespeare
The Bard of Avon and the Church of Rome
is available at Ignatius Press at the above link.[Update: Just saw a review of Pearce's book Literary Giants, Literary Catholics over at the Curt Jester so am adding that!]
Friday, May 9, 2008
A real time capsule...
..or a cyber one from Apple. Pogue reviews Apple's backup system for Macs. Positively.
Catholic Writers conference online...
The Catholic Writers Conference Online is almost over, sadly. I've enjoyed it very much, particularly the fact that I can attend without traveling and choose which presentations will help me the most. I'd like to thank all the volunteers who are giving so generously of their time.
We were talking about typewriters before one of the chats (as in the chat before the chat) and reminiscing about IBM selectrics. And when I spoke to a friend about it, she told me of this adorable children's book that was quite successful despite the fact that it is about typewriters which a lot of children today don't know much about, if at all. (It contains other amusing animal tales and is available at amazon.com). Apparently the farmer is quite upset at the noise the cows are making from typing all day! I think the cover is adorable and what a great book idea.
Anyhow, thanks to everyone for sharing their hard earned knowledge with me and for your kind and warm welcome.
[visual image: The cover of a book that reads on top Click clack Moo Cows That Type has three cows in front of a typewriter.]
We were talking about typewriters before one of the chats (as in the chat before the chat) and reminiscing about IBM selectrics. And when I spoke to a friend about it, she told me of this adorable children's book that was quite successful despite the fact that it is about typewriters which a lot of children today don't know much about, if at all. (It contains other amusing animal tales and is available at amazon.com). Apparently the farmer is quite upset at the noise the cows are making from typing all day! I think the cover is adorable and what a great book idea.
Anyhow, thanks to everyone for sharing their hard earned knowledge with me and for your kind and warm welcome.
[visual image: The cover of a book that reads on top Click clack Moo Cows That Type has three cows in front of a typewriter.]
Posts that make me go hmmm...
I was reading this post by another quad over at From the End of a Mouthstick which talks about some of the issues I've dealt with myself, and talks about how people have different perspectives about what would make them happy. The "if I only had" syndrome is what I sometimes call it.
The writer talks about how in rehab quads were saying if they had use of their hands they would be happy and paras were saying if they had use of their legs they could be independent and the medical staff were saying if they had a new car they would be happy. Of course, Einstein was the one to pipe up with "It's all relative" and the wise guy in the room will be sure to ask "To what?"
Personally, I've found that , as we say in the spinal cord community, our level of disability has little to do with happiness. I know many quads who are happier than paras and many paras who are happier than able bodied people and many quads who are happier than able bodied people - well, you get the idea.
The same is true about money or material things. As I watch our economy get tighter, I know there's more to this topic than just philosophizing about the relativity of situations. There are people ( we all know them) who talk about getting this or that and as soon as they have the latest and greatest model are looking to get something else. This makes them pretty unhappy, although they could already win the prize for having the most toys when they die.
I just don't think that circumstances necessarily define happiness. An inner sense of values and an ability to be resilient really do play a part. Here's a video I found on a link to on a friend's blog today that kind of puts things in perspective.
The writer talks about how in rehab quads were saying if they had use of their hands they would be happy and paras were saying if they had use of their legs they could be independent and the medical staff were saying if they had a new car they would be happy. Of course, Einstein was the one to pipe up with "It's all relative" and the wise guy in the room will be sure to ask "To what?"
Personally, I've found that , as we say in the spinal cord community, our level of disability has little to do with happiness. I know many quads who are happier than paras and many paras who are happier than able bodied people and many quads who are happier than able bodied people - well, you get the idea.
The same is true about money or material things. As I watch our economy get tighter, I know there's more to this topic than just philosophizing about the relativity of situations. There are people ( we all know them) who talk about getting this or that and as soon as they have the latest and greatest model are looking to get something else. This makes them pretty unhappy, although they could already win the prize for having the most toys when they die.
I just don't think that circumstances necessarily define happiness. An inner sense of values and an ability to be resilient really do play a part. Here's a video I found on a link to on a friend's blog today that kind of puts things in perspective.
Assistive Technology Blog Carnival
Have you heard of the new AT Blog Carnival ?
Lon left me a comment telling me that this carnival is in its third month and asked me to spread the word. You can participate by submitting a post - and by spreading the word to others to support this very important carnival. Here's the lowdown about this month's topic, synthesized speech:
Please send in a post you have written or write a post on your use of synthesized speech. You can write a review on a site, a tool or a software, application and use by children, issues with it and print disability, rating different voices, etc. Be creative and let us know your thoughts on it.
The deadline to submit a post for the May edition will be May 23. The new edition will be up May 26.
Submit to: lonthornburg@nolimits2learning.com
Or you can submit over at blogcarnival (just choose AT carnival).
Here's a link to edition 2 of the carnival: My favorite post on assistive technology. If you have a blog, please consider linking to this carnival to help get the word out there! Thanks.
There's a breadth of issues covered in this carnival and a wealth of information - it should give you a good idea of what an impressive group is participating in it. What a great resource! For teachers and parents: check out the blog Teaching Learners with Multiple Special Needs.
[And hey electrodude, here's one on accessible gaming.]
[visual description: The logo from the AT Blog carnival. A black ferris wheel is shown on a gray background. On the top it reads:Assistive Technology Blog Carnival. Underneath it says: Celebrating Human Potential & Sharing How We Do It.]
Thursday, May 8, 2008
37 feet of boxes: one human life
The story of Genie, the "wild child" who was so badly abused and tortured that her case gained international recognition, is being researched by a 23 year old student, who will fly to UCLA to view the 37 feet of boxes containing information about her soon.
Genie is now speechless, living in an institution, having been abandoned by people who have studied her, researched her and quasi-cared for her while funding was pouring in. Sadly, when that funding ran dry, amidst rifts among the players, Genie was sent back to foster homes and institutional care.
Genie is now speechless, living in an institution, having been abandoned by people who have studied her, researched her and quasi-cared for her while funding was pouring in. Sadly, when that funding ran dry, amidst rifts among the players, Genie was sent back to foster homes and institutional care.
Does it matter?
I was reading a book on my Kindle last night that I wanted to read years ago when it came out, but couldn't get in an accessible form.
Does the name of the book matter?
Perhaps only to me.
Does the fact that I can now read what I want matter?
Again, perhaps only to me.
In the quiet of the room, with my cat sleeping on my lap, I thought these things.
I want to believe that people care whether people with disabilities get at the assistive technology that is so necessary to them. Maybe that's because I have a disability that requires quite a bit of it, so I tell myself that to calm myself down.
But I don't see efforts to make that happen, except on a one to one basis. I don't see changes in legislation, changes in social policy or even a discussion of the issue in the elections.
Did you know that in 2005, the median annual household income of working-age Americans with disabilities was $35,000, while for working-age Americans without disabilities it was $61,500?
And those are the people who are working. It says 62% of people with disabilities aren't. Leveling the playing field is one factor: a college degree, according to the study. When a person with a disability acquires a college degree, it equalizes many of the statistics, the study claims.
There are a lot of assumptions in that study, however. It assumes that people with disabilities can get the services they need and, yes, the assistive technology they need to get the education.
So we're back to that assistive technology issue again. It opens the door to fully participating in life - to working, getting an education, being part of a community. And it costs money, so much money that paying as an individual for it in this age of insurance denials makes much of it out of reach (no pun intended for us quads).
I wanted a page turner for the last decade, to have the freedom of working without being in pain. I priced them and the only one that would work on the materials I need to read cost $4000. Now the price is up to $5000.
So I use a headpointer and it's slower, which cuts into my billable time. Since I have been busy buying wheelchairs, eating utensils, assistive stuff so I can write on a computer (the only way I can write), equipment so I can turn lights on/off, etc., the page turner has never happened. Things break and have to be replaced, which often puts other items down the list.
When the Kindle came out I thought - hmmm. $399 compared to $5000. Here's the irony that people with disabilities know: if an item is not made as a disability item, it's cheaper. Part of it is that it's mass produced, but there are other reasons.
The Kindle is not a total solution for me because I have to have my work scanned to use it for that. But in this increasingly digital age, I'm looking forward to a strategy that uses more mass marketed items as assistive technology, paying less and spending more nights reading a book than staying up to work extra hours to afford items made for disabled folks.
I know that matters to me. And if you have a disability and are reading this, perhaps my experiences will help you decide how to spend the dollars you have (or your family has) wisely. Because if buying the assistive technology screws up your quality of life, it may not be worth it.
Does the name of the book matter?
Perhaps only to me.
Does the fact that I can now read what I want matter?
Again, perhaps only to me.
In the quiet of the room, with my cat sleeping on my lap, I thought these things.
I want to believe that people care whether people with disabilities get at the assistive technology that is so necessary to them. Maybe that's because I have a disability that requires quite a bit of it, so I tell myself that to calm myself down.
But I don't see efforts to make that happen, except on a one to one basis. I don't see changes in legislation, changes in social policy or even a discussion of the issue in the elections.
Did you know that in 2005, the median annual household income of working-age Americans with disabilities was $35,000, while for working-age Americans without disabilities it was $61,500?
And those are the people who are working. It says 62% of people with disabilities aren't. Leveling the playing field is one factor: a college degree, according to the study. When a person with a disability acquires a college degree, it equalizes many of the statistics, the study claims.
There are a lot of assumptions in that study, however. It assumes that people with disabilities can get the services they need and, yes, the assistive technology they need to get the education.
So we're back to that assistive technology issue again. It opens the door to fully participating in life - to working, getting an education, being part of a community. And it costs money, so much money that paying as an individual for it in this age of insurance denials makes much of it out of reach (no pun intended for us quads).
I wanted a page turner for the last decade, to have the freedom of working without being in pain. I priced them and the only one that would work on the materials I need to read cost $4000. Now the price is up to $5000.
So I use a headpointer and it's slower, which cuts into my billable time. Since I have been busy buying wheelchairs, eating utensils, assistive stuff so I can write on a computer (the only way I can write), equipment so I can turn lights on/off, etc., the page turner has never happened. Things break and have to be replaced, which often puts other items down the list.
When the Kindle came out I thought - hmmm. $399 compared to $5000. Here's the irony that people with disabilities know: if an item is not made as a disability item, it's cheaper. Part of it is that it's mass produced, but there are other reasons.
The Kindle is not a total solution for me because I have to have my work scanned to use it for that. But in this increasingly digital age, I'm looking forward to a strategy that uses more mass marketed items as assistive technology, paying less and spending more nights reading a book than staying up to work extra hours to afford items made for disabled folks.
I know that matters to me. And if you have a disability and are reading this, perhaps my experiences will help you decide how to spend the dollars you have (or your family has) wisely. Because if buying the assistive technology screws up your quality of life, it may not be worth it.
Here they come! 37th edition of the Disability Blog Carnival...
..is up over at CripChick's blog. And what a collection of posts it is!
CripChick writes:
This disability blog carnival, the 37th one of its kind, focuses on the celebration of disability culture, struggle, people, history and identity. Put your party hats on— we’re ready to get started!
“I think it was perhaps the most important thing that happened to me. It formed me, guided me, instructed me, helped me, humiliated me, all those things at once. I’ve never gotten over it, and I am aware of the force and power of it.”
—Dorethea Lange on disability
As those words echo in your head, think of the powerful effect of so many diverse voices from our community speaking up at once - and follow the link over to join the celebration.
CripChick writes:
This disability blog carnival, the 37th one of its kind, focuses on the celebration of disability culture, struggle, people, history and identity. Put your party hats on— we’re ready to get started!
“I think it was perhaps the most important thing that happened to me. It formed me, guided me, instructed me, helped me, humiliated me, all those things at once. I’ve never gotten over it, and I am aware of the force and power of it.”
—Dorethea Lange on disability
As those words echo in your head, think of the powerful effect of so many diverse voices from our community speaking up at once - and follow the link over to join the celebration.
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