Who is John Trowbridge?
He's the guy who is the "ball dropper" for the Times Square New Year's Eve celebration.He was just on TV explaining how the whole deal works - demonstrating the technology behind his job.
However, as he pointed out, the downside of this gig is that he needs to find another job by tomorrow.
I don't know about you, but I can relate to that feeling. Sometimes I stop in the middle of what I am doing, whether it's my advocacy work, writing, peer counseling, playing wheelchair tennis, handcycling, etc. and I think to myself - what will my "job " be tomorrow?
More importantly, how should I be spending my time tomorrow? How should I discern God's will when making those choices?
I turn to prayer. I ask God frequently to "tap me on the shoulder" spiritually so that I can make better decisions. When it comes to time, I feel a sense of stewardship and realize that it has been given to me. I could be dramatic and tell you that I saw my life pass before my eyes when I had my car accident years ago - and after that realized my mortality.
But the truth is (and it's much less exciting) that the precious value of time has really been a lesson I've learned with aging. As the years go by and I experience how much of life is a circle in which we all play a small but vital part, I've learned the value of "showing up" to do my piece. This means being open to what my role is in any given situation and being willing to play it, even when it's not the lead or the role I wanted at all.
I don't know what John Trowbridge will choose to do next after he drops the ball tonight heralding the start of 2007. But whatever it is, I'll remember him fondly as a brother who shares the same day to day journey of finding his way to be useful to others.
Sunday, December 31, 2006
Saturday, December 30, 2006
Hands free mouse
Are you looking for a hands free mouse (and keyboard entry) for your computer? Check this out - the Smart Nav 3 system. It consists of a camera and the use of a "dot" which is placed in one of several locations (your forehead, a cap, etc.) so that you can control the cursor on your computer with slight head movements. The top model also includes an onscreen keyboard that you can access to allow you to type.
Gamers may want to know that several disabled game forums recommend this system along with the software Game Commander and a Sip n Puff device - to allow you to play flight sims and quite a few other games. Non disabled gamers may choose a less expensive system. Check out the information on the site listed above.
The cost? It varies, depending which accessories you choose and which system you need. But plan on spending about four hundred dollars for the Smart Nav 3 system if you are a quadriplegic and require the most expensive version.
Gamers may want to know that several disabled game forums recommend this system along with the software Game Commander and a Sip n Puff device - to allow you to play flight sims and quite a few other games. Non disabled gamers may choose a less expensive system. Check out the information on the site listed above.
The cost? It varies, depending which accessories you choose and which system you need. But plan on spending about four hundred dollars for the Smart Nav 3 system if you are a quadriplegic and require the most expensive version.
The restroom? It's over there - up those steps....
I just returned from having lunch out - a treat I don't often indulge in, but due to the holidays, decided to just go all out and splurge!
So I had a very enjoyable meal with a friend. The restaurant (which is a chain) seemed to be very accessible. The parking was near the door and flat, there was a ramp up to the table where we were seated and the aisles between tables were wide enough to be comfortable. (This was not the case, however, between the tables - if it was crowded my wheelchair would have been in someone's lap).
We finished our meal and the waitress brought the check. When we asked where the restroom was, the waitress looked funny and said "It's over there" and scuttled away.
Since neither of us had been to this restaurant before, we stopped another waitress and asked her specifically where the restroom was. She replied that it was down the ramp and over to the other side of the restaurant - "up those steps".
"No," I said. "I meant where is your accessible restroom?"
"Up those steps," she repeated, turning away.
It was time to talk to the manager. Of course I was assured that they are working on this problem diligently and when I asked about the timeframe and for specifics , I was told that it is being addressed.
I replied "And I'd like to know when. Because, you see, today I have to use a restroom."
There was a silence. The manager replied "I don't have to answer you."
"True, " I said. "And I don't have to even have this conversation before I file a complaint under the American with Disabilities Act."
I then had my friend snap a picture of the inaccessible area, steps included. The manager blanched.
Then I hauled my wheelchair into my car, drove to another place, hauled my wheelchair out, went to their restroom and hauled my wheelchair back into my car.
Sometimes we need to push it forward a bit by being the impetus so that the next guy or gal doesn't face the same barriers.
For general ADA information, answers to specific technical questions, free ADA materials, or information about filing a complaint, call:
800 - 514 - 0301 (voice)
800 - 514 - 0383 (TTY)
So I had a very enjoyable meal with a friend. The restaurant (which is a chain) seemed to be very accessible. The parking was near the door and flat, there was a ramp up to the table where we were seated and the aisles between tables were wide enough to be comfortable. (This was not the case, however, between the tables - if it was crowded my wheelchair would have been in someone's lap).
We finished our meal and the waitress brought the check. When we asked where the restroom was, the waitress looked funny and said "It's over there" and scuttled away.
Since neither of us had been to this restaurant before, we stopped another waitress and asked her specifically where the restroom was. She replied that it was down the ramp and over to the other side of the restaurant - "up those steps".
"No," I said. "I meant where is your accessible restroom?"
"Up those steps," she repeated, turning away.
It was time to talk to the manager. Of course I was assured that they are working on this problem diligently and when I asked about the timeframe and for specifics , I was told that it is being addressed.
I replied "And I'd like to know when. Because, you see, today I have to use a restroom."
There was a silence. The manager replied "I don't have to answer you."
"True, " I said. "And I don't have to even have this conversation before I file a complaint under the American with Disabilities Act."
I then had my friend snap a picture of the inaccessible area, steps included. The manager blanched.
Then I hauled my wheelchair into my car, drove to another place, hauled my wheelchair out, went to their restroom and hauled my wheelchair back into my car.
Sometimes we need to push it forward a bit by being the impetus so that the next guy or gal doesn't face the same barriers.
For general ADA information, answers to specific technical questions, free ADA materials, or information about filing a complaint, call:
800 - 514 - 0301 (voice)
800 - 514 - 0383 (TTY)
Friday, December 29, 2006
Transplants and recipients with cognitive limitations
Misty Cargill has been denied an organ transplant.
This piece on NPR states that Misty, who is a person with cognitive limitations, feels bad about the denial and the reason for it. In addition to needing a kidney transplant which makes her sick, she now carries the added burden of feeling bad because she was denied the transplant because of "mental competency issues." She hangs her head when asked about it.
Others say it is discriminatory. As the article indicates, Steven Reiss, an expert on developmental disabilities at Ohio State University , has done a study of 42 people with cognitive limitations who received transplants. The success rate is extremely high, ranging from 100 per cent after one year to 90 per cent after two years.
Yet he sees alot of transplants denied to people with cognitive limitations.
I agree that the denial of a transplant to Misty on that basis alone is discriminatory and say it is another example of our society devaluing the life of a person with a disability. We need stronger laws protecting the rights of those who cannot speak for themselves with the emphasis on guidelines that are legitimate, such as proof that the recipient would not do the necessary care involved with the transplant. This would include looking at the support and resources available to the person. According to Professor Reiss, many of the denied candidates lived in group homes and care and oversight was readily available.
Using the person's disability as the criterion is a dangerous and unacceptable standard.
Thanks to Reverend William Gaventa for forwarding an email regarding this on our Inclusive ministry list serv.
This piece on NPR states that Misty, who is a person with cognitive limitations, feels bad about the denial and the reason for it. In addition to needing a kidney transplant which makes her sick, she now carries the added burden of feeling bad because she was denied the transplant because of "mental competency issues." She hangs her head when asked about it.
Others say it is discriminatory. As the article indicates, Steven Reiss, an expert on developmental disabilities at Ohio State University , has done a study of 42 people with cognitive limitations who received transplants. The success rate is extremely high, ranging from 100 per cent after one year to 90 per cent after two years.
Yet he sees alot of transplants denied to people with cognitive limitations.
I agree that the denial of a transplant to Misty on that basis alone is discriminatory and say it is another example of our society devaluing the life of a person with a disability. We need stronger laws protecting the rights of those who cannot speak for themselves with the emphasis on guidelines that are legitimate, such as proof that the recipient would not do the necessary care involved with the transplant. This would include looking at the support and resources available to the person. According to Professor Reiss, many of the denied candidates lived in group homes and care and oversight was readily available.
Using the person's disability as the criterion is a dangerous and unacceptable standard.
Thanks to Reverend William Gaventa for forwarding an email regarding this on our Inclusive ministry list serv.
Commentary on "It Takes One"
The article below reminded me of the many people, one on one, who have helped me as I face enormous expenses from my own disability.
I've had an aide for years who works at an extremely low salary which has been a huge financial sacrifice for her.
A friend of mine ordered my current wheelchair from ebay and had it shipped to me at no cost to me.
My kitchen was made accessible by a friend who coordinated contractors, bought supplies and even consulted with others as to the proper dimensions.
A friend of mine built my ramp at no cost to me.
My landlady has helped me with costs pertaining to getting a ramp and pays for additional improvements - which is an ongoing project and much appreciated.
Friends of mine who are nurses donate their time and care as needed.
My wheelchair tennis chair was donated to me by Quickie.
And then there are the many people who have , one on one, helped me with an errand, spent time with me when I wasn't feeling well or gave me rides or brought me meals.
All of these efforts were, without exception, sparked by one person even when others helped. None of them would have happened if any one of these people chose not to help.
Experiencing this kind of generosity of spirit has changed not only the course of my life,but it's changed me . I can take no credit for the fact that I now am more open to others' needs, because I am simply passing on what has been given to me to those who need it more.
Whether we give others medical equipment, money, time, meals, services or labor, our efforts as one person have a ripple effect that we may trust in, although it is often unseen by us.
I've had an aide for years who works at an extremely low salary which has been a huge financial sacrifice for her.
A friend of mine ordered my current wheelchair from ebay and had it shipped to me at no cost to me.
My kitchen was made accessible by a friend who coordinated contractors, bought supplies and even consulted with others as to the proper dimensions.
A friend of mine built my ramp at no cost to me.
My landlady has helped me with costs pertaining to getting a ramp and pays for additional improvements - which is an ongoing project and much appreciated.
Friends of mine who are nurses donate their time and care as needed.
My wheelchair tennis chair was donated to me by Quickie.
And then there are the many people who have , one on one, helped me with an errand, spent time with me when I wasn't feeling well or gave me rides or brought me meals.
All of these efforts were, without exception, sparked by one person even when others helped. None of them would have happened if any one of these people chose not to help.
Experiencing this kind of generosity of spirit has changed not only the course of my life,but it's changed me . I can take no credit for the fact that I now am more open to others' needs, because I am simply passing on what has been given to me to those who need it more.
Whether we give others medical equipment, money, time, meals, services or labor, our efforts as one person have a ripple effect that we may trust in, although it is often unseen by us.
"It Takes One" Via Wheelchair Junkie by Mark Smith
Mark Smith over at Wheelchair Junkie has written a New Year's article entitled "It Takes One". He writes about a young man whose wheelchair was stolen and was using a medical wheelchair which, as all of us in wheelchairs know, severely limits your mobility.
Mark makes the point that one person could have changed this situation by acting to help the young man get the wheelchair he needed. He emphasizes that we don't want to get caught up in the fallacy of "It takes a village" and avoid personal responsibility to help others. He writes:
"By any means, one tenacious individual could have helped restore the young man's mobility in a matter of days, not weeks or months. One inspired individual could have immediately taken action, fostering the young man's mobility and independence, rather than simply closing the newspaper, trusting that the community at large would address the issue."
Via Wheelchair Junkie
Mark makes the point that one person could have changed this situation by acting to help the young man get the wheelchair he needed. He emphasizes that we don't want to get caught up in the fallacy of "It takes a village" and avoid personal responsibility to help others. He writes:
"By any means, one tenacious individual could have helped restore the young man's mobility in a matter of days, not weeks or months. One inspired individual could have immediately taken action, fostering the young man's mobility and independence, rather than simply closing the newspaper, trusting that the community at large would address the issue."
Via Wheelchair Junkie
Thursday, December 28, 2006
Movie Review: The Goal (2006)
I rented this movie via Netflix which described it as a film about two quadriplegic athletes who find purpose through joining a wheelchair rugby team.
Although I found the depiction of the accident melodramatic, the second half of the movie picked up a bit. Wheelchair users were shown skiing, camping and doing peer counseling. Although the star of the film was able bodied, the cast did include a number of people with disabilities.
I do recommend this film, especially for a hilarious camping scene - where two wheelchair users wind up having a good laugh at themselves after a new wheelchair user tries to get water from a stream - at the bottom of a steep hill. The message it sent out was basically one that is worthwhile : those of us in wheelchairs can do many things people assume we cannot - and we'd rather learn to laugh at ourselves if it doesn't work out than settle.
Although I found the depiction of the accident melodramatic, the second half of the movie picked up a bit. Wheelchair users were shown skiing, camping and doing peer counseling. Although the star of the film was able bodied, the cast did include a number of people with disabilities.
I do recommend this film, especially for a hilarious camping scene - where two wheelchair users wind up having a good laugh at themselves after a new wheelchair user tries to get water from a stream - at the bottom of a steep hill. The message it sent out was basically one that is worthwhile : those of us in wheelchairs can do many things people assume we cannot - and we'd rather learn to laugh at ourselves if it doesn't work out than settle.
Assistive - - cat?
Today I was talking on the phone and tried to use the voice recognition feature to do something, but it wouldn't work. I used my assistive device to try to push a button and missed the target about three times.
Suddenly I saw a big black and white paw descend onto the button and push it down. I looked at my cat Buddy and he blinked at me.
I said "Gee, thanks."
Several years ago I attended a presentation on assistive dogs. Several of my friends, who are dog-lovers, urged me to get a dog to help me with some of the tasks that are difficult due to my quadriplegia. However, I decided at the time not to do it. My aide teased me that I should get a monkey instead. I told her that would be fine - she can change its diapers. So much for that idea.
But it never occurred to me that my cat would be able to do some things for me. So after this happened with my phone, I was curious and wondered if he would do it again. I decided to test him out.
He was sitting on the arm of my chair, in a half-nap, half -awake state which is how he spends about 23 hours a day. I moved the TV remote close to me and tried to hit a button. I missed. I saw his eyes dart over. I tried to hit the button again. I missed. My cat looked at me, then his paw flew out sideways and hit the button. The TV went on and he sighed contentedly.
Remarkable, I thought. Then again, I wondered - do I really want a cat who can answer the phone and turn on the TV when I go out? Heck, why not?
Maybe he could go out to the refrigerator and get me a snack. I wouldn't mind that.
Suddenly I saw a big black and white paw descend onto the button and push it down. I looked at my cat Buddy and he blinked at me.
I said "Gee, thanks."
Several years ago I attended a presentation on assistive dogs. Several of my friends, who are dog-lovers, urged me to get a dog to help me with some of the tasks that are difficult due to my quadriplegia. However, I decided at the time not to do it. My aide teased me that I should get a monkey instead. I told her that would be fine - she can change its diapers. So much for that idea.
But it never occurred to me that my cat would be able to do some things for me. So after this happened with my phone, I was curious and wondered if he would do it again. I decided to test him out.
He was sitting on the arm of my chair, in a half-nap, half -awake state which is how he spends about 23 hours a day. I moved the TV remote close to me and tried to hit a button. I missed. I saw his eyes dart over. I tried to hit the button again. I missed. My cat looked at me, then his paw flew out sideways and hit the button. The TV went on and he sighed contentedly.
Remarkable, I thought. Then again, I wondered - do I really want a cat who can answer the phone and turn on the TV when I go out? Heck, why not?
Maybe he could go out to the refrigerator and get me a snack. I wouldn't mind that.
The Church of Our Saviour - letting people know about a church's accessibility as a road to inclusion
This is a great example of a church letting people with disabilities know that their facilities are accessible and that they are welcoming and inclusive.
Check out this web page at the Church of Our Saviour in Secaucus NJ which outlines specifically which accommodations they have made. It's a reader-friendly style which spells out exactly what to expect architecturally AND is welcoming and directed at the person with a disability.
Too many times I find that churches spend time and money to build accessible ramps and bathrooms, but then do not realize that people with disabilities need to know about them (unless they already attend that church, how would they know?) This is also true if your parish can offer braille materials or services in sign language.
If your church has accessible facilities, consider placing a page like this on your web site so that people with disabilities will know they are welcome - and they can get inside!
Check out this web page at the Church of Our Saviour in Secaucus NJ which outlines specifically which accommodations they have made. It's a reader-friendly style which spells out exactly what to expect architecturally AND is welcoming and directed at the person with a disability.
Too many times I find that churches spend time and money to build accessible ramps and bathrooms, but then do not realize that people with disabilities need to know about them (unless they already attend that church, how would they know?) This is also true if your parish can offer braille materials or services in sign language.
If your church has accessible facilities, consider placing a page like this on your web site so that people with disabilities will know they are welcome - and they can get inside!
National Catholic Partnership on Disability has a Council on Mental Illness..
Please click above to go to their home page. They are adding more material these days to their home page so it's a better resource than it was, although navigating it with my adaptive software was difficult . ( Actually I gave up after three tries because I have work to do so maybe it is possible if I had more time.)
Wednesday, December 27, 2006
Need an onscreen keyboard?
Click n Type virtual keyboard is a free software program for those needing alternate input.
I received an email from a quadriplegic vet today looking for something along these lines - and I've been checking them out myself -so here it is. There are commercial software programs available as well, such as Aurora suite for Windows. You may want to download a free demo here.
For Mac , Keystrokes 3.6 is an excellent onscreen keyboard with word prediction.
The word prediction feature comes in handy to speed along the input, whether you're using a headpointer , mouse, joystick or other method. Keep in mind that these programs can get a bit pricey so you might want to try to get funding for them before you take the plunge.
I received an email from a quadriplegic vet today looking for something along these lines - and I've been checking them out myself -so here it is. There are commercial software programs available as well, such as Aurora suite for Windows. You may want to download a free demo here.
For Mac , Keystrokes 3.6 is an excellent onscreen keyboard with word prediction.
The word prediction feature comes in handy to speed along the input, whether you're using a headpointer , mouse, joystick or other method. Keep in mind that these programs can get a bit pricey so you might want to try to get funding for them before you take the plunge.
Veteran's Wheelchair Games -
If you've never seen a video of wheelchair sports before, watch this to see how it benefits the vets adjusting to war injuries.
6 year old sings to her brother in Iraq: When are you coming home?
For our military families at the holidays. May our prayers be with them.
"Let us submit to God in all things and not contradict Him, even if what He says seems contrary to our reason and intellect; rather let His words prevail over our reason and intellect. Let us act in this way with regard to the (eucharistic) mysteries, looking not only at what falls under our senses but holding on to His words. For His word cannot lead us astray."
St. John Chrysostum
St. John Chrysostum
Tuesday, December 26, 2006
Handicapped parking - roughing it...
Penny Richards over Temple U's disability studies blog has posted a picture of a handicapped parking spot which she likens to the surface of the moon because it's so rough - and points out that it's probably not the worst spot around even at that. It's worth taking a look at (just click above).
And they don't even have snow in Los Angeles....
David over at Growing Up with a disability writes a thought provoking post about how difficult it was for him to get around after a snowfall.
He writes about how getting around is essential to his independence and how he felt let down by his town when he could not access curb cuts and the like because services like snow removal were not done.
He makes a very important point - one that I have encountered many times over the years - which is that those of us who depend on accessible , barrier- free environments require them to be that way even if maintenance must be done. We cannot live our lives properly if we have to wait around for days for snow to melt! How can we get to appointments or fulfill our responsibilities in our jobs or as students if we can't get around?
I recall one year where I ventured downtown a few days after a snowstorm. I was crossing the street when I realized that the curb cut was not shoveled-and I swerved to avoid being hit by a car that came too close after I couldn't get up on the sidwalk in my wheelchair. The momentum knocked me out of my chair and I fell onto a parking meter.
All I could think of as I hit the ground was an image of being splayed across the metal meter for all to see in the local paper. Not a good look.
Luckily I wasn't injured. A passing student helped me back into my wheelchair. I couldn't get around well enough to run my errands, however, and in addition to my dignity being damaged, I returned home cold, wet and angry at the failure of my town to do simple snow removal.
So, thanks David , for raising this issue - this time of year it's a good reminder for all of us to continue to make others aware of their duty to remove the snow - and to enforce the local laws when it isn't done in a timely manner if necessary.
He writes about how getting around is essential to his independence and how he felt let down by his town when he could not access curb cuts and the like because services like snow removal were not done.
He makes a very important point - one that I have encountered many times over the years - which is that those of us who depend on accessible , barrier- free environments require them to be that way even if maintenance must be done. We cannot live our lives properly if we have to wait around for days for snow to melt! How can we get to appointments or fulfill our responsibilities in our jobs or as students if we can't get around?
I recall one year where I ventured downtown a few days after a snowstorm. I was crossing the street when I realized that the curb cut was not shoveled-and I swerved to avoid being hit by a car that came too close after I couldn't get up on the sidwalk in my wheelchair. The momentum knocked me out of my chair and I fell onto a parking meter.
All I could think of as I hit the ground was an image of being splayed across the metal meter for all to see in the local paper. Not a good look.
Luckily I wasn't injured. A passing student helped me back into my wheelchair. I couldn't get around well enough to run my errands, however, and in addition to my dignity being damaged, I returned home cold, wet and angry at the failure of my town to do simple snow removal.
So, thanks David , for raising this issue - this time of year it's a good reminder for all of us to continue to make others aware of their duty to remove the snow - and to enforce the local laws when it isn't done in a timely manner if necessary.
What was God thinking of ----norovirus....
For a spiritually rich post by Sr Edith over at Monastic Musings, click above.
So how was everyone's Christmas?
I spent yesterday with friends and families as they dropped in on me for visits. It worked out great.
I started the day off with Mass.
Our parish is blessed with a wonderful music program, led by Tim Keyes. He works extremely hard to provide us with music that adds to the liturgical experience and celebration. I really enjoy listening and singing at Mass. To me, it's always been a way to pray and to be joyful about the great gift of our faith.
Since I can't hold a song book or turn pages, by the time we get to the third and fourth verses, I'm usually humming along waiting for the chorus. However, one nice thing with Christmas is that I've usually memorized the hymns we sing! (I know, I could ask for help , but I get tired of that. I always fantasize that the words could be put on the wall with bouncing balls - you remember sing-a-longs?)
The Mass was not only joyous, but affirming of our parish's commitment to a sense of community. I was greeted by the Eucharistic ministers on the way into Mass - a literal line of smiles, holiday greetings and welcomings. Our clergy, both our deacon and pastor, were busily greeting everyone - even though this was the last Mass in a series of two days of umpteen Masses. The enthuasiasm was contagious.
The rest of my day was nice - don't get me wrong. But the celebration of Mass was the highlight.
I hope you'll share about your Christmas experience here too.
I started the day off with Mass.
Our parish is blessed with a wonderful music program, led by Tim Keyes. He works extremely hard to provide us with music that adds to the liturgical experience and celebration. I really enjoy listening and singing at Mass. To me, it's always been a way to pray and to be joyful about the great gift of our faith.
Since I can't hold a song book or turn pages, by the time we get to the third and fourth verses, I'm usually humming along waiting for the chorus. However, one nice thing with Christmas is that I've usually memorized the hymns we sing! (I know, I could ask for help , but I get tired of that. I always fantasize that the words could be put on the wall with bouncing balls - you remember sing-a-longs?)
The Mass was not only joyous, but affirming of our parish's commitment to a sense of community. I was greeted by the Eucharistic ministers on the way into Mass - a literal line of smiles, holiday greetings and welcomings. Our clergy, both our deacon and pastor, were busily greeting everyone - even though this was the last Mass in a series of two days of umpteen Masses. The enthuasiasm was contagious.
The rest of my day was nice - don't get me wrong. But the celebration of Mass was the highlight.
I hope you'll share about your Christmas experience here too.
Sunday, December 24, 2006
Yes, Nicole, there is a Santa Claus..
A Massachusetts teenager with CP whose wheelchair was stolen receives a new one....
Saturday, December 23, 2006
Bearing gifts...
A homeless man helps a Dominican nun deliver food to the homeless in this article describing how Johnny, who has lived on the streets since 1986, is helping to serve others.
Spending Christmas alone?
I found this wonderful piece (click above) written for people who might be spending the upcoming holiday alone. I know myself how difficult that can feel - whether it's due to circumstances in our lives, changing relationships or, as in my case, lack of access. This article talks about how we can choose to handle this spiritually and I thought perhaps some readers might benefit from it.
For those of us who have disabilities and cannot get into others' homes , it is important to remember that we can look at alternative ways to find companionship and fellowship on the holiday. Obviously, we can go to church. Or we can volunteer at a soup kitchen. For those of you like me who can't ladle food out physically (and if we do it might wind up in someone's lap), how about inviting friends out for either a meal or a cup of coffee as your finances permit?
You can also ask people to stop by for a short time if you can't get into their homes. At first I hesitated to do this since I felt I was inconveniencing them, but I was pleasantly surprised at the positive and enthusiastic response I received about how much fun it would be for people to drop in. (I do have an amazing snowman collection - I'm sure that's it!)
However, if you are housebound or these suggestions don't work for you, take a moment to read the above article from Online Ministries - and feel free to share here about your experiences.
One thing I do know for sure - we are never alone.
For those of us who have disabilities and cannot get into others' homes , it is important to remember that we can look at alternative ways to find companionship and fellowship on the holiday. Obviously, we can go to church. Or we can volunteer at a soup kitchen. For those of you like me who can't ladle food out physically (and if we do it might wind up in someone's lap), how about inviting friends out for either a meal or a cup of coffee as your finances permit?
You can also ask people to stop by for a short time if you can't get into their homes. At first I hesitated to do this since I felt I was inconveniencing them, but I was pleasantly surprised at the positive and enthusiastic response I received about how much fun it would be for people to drop in. (I do have an amazing snowman collection - I'm sure that's it!)
However, if you are housebound or these suggestions don't work for you, take a moment to read the above article from Online Ministries - and feel free to share here about your experiences.
One thing I do know for sure - we are never alone.
Wednesday, December 13, 2006
Wishing You a Very Special Christmas
Wheelie Catholic will be taking a holiday hiatus and wishes all readers a holy and happy Christmas!
Tuesday, December 12, 2006
China clamping down on online games....
some of which contain religious content that is not allowed.
Monday, December 11, 2006
My Wheelchair's Vacation Story
Check out this wonderful post from David at Growing Up with a Disability - about the adventures of his wheelchair on his trip. Unfortunately his wheelchair met a fatal end after being dropped and mishandled on an airline.....but this is a creative and entertaining story.
Our best wishes to David that he get his new wheelchair ASAP
Our best wishes to David that he get his new wheelchair ASAP
Meals on Wheels programs in bumpy times
Rising gas costs are adding to their problems since volunteers are fewer and far between. The programs also need donations. Please read the above article if you can help.
Sunday, December 10, 2006
Via the Gimp Parade
The Saturday Slumgullion, including a link to a radio show series on People First programs.
Life rolls on
Hey, surf's up!
Tonight on Extreme Home Makeover, a paralyzed female LA cop was fortunate enough to receive a custom surfboard from the founder of Life Rolls on.....click above to read about this wonderful organization that helps folks with disabilities get back into the swim. (now that's a bad pun....)
But listen to what folks say on the video
"I had the best time of my life"
"It's the first time I've been in the water since my injury and that's almost four years ago..."
Pretty cool huh?
Tonight on Extreme Home Makeover, a paralyzed female LA cop was fortunate enough to receive a custom surfboard from the founder of Life Rolls on.....click above to read about this wonderful organization that helps folks with disabilities get back into the swim. (now that's a bad pun....)
But listen to what folks say on the video
"I had the best time of my life"
"It's the first time I've been in the water since my injury and that's almost four years ago..."
Pretty cool huh?
Saturday, December 9, 2006
What would your ticket say?
I'm watching Polar Express on TV. There's a scene where each of the children have their tickets stamped by the conductor on their way home. One child's ticket reads "rely on..depend on..." because he learned to have friends. Another's reads "lead..." as in leader.
The little boy who is the star has a ticket that reads simply
"believe"
Makes me wonder what my ticket would read....how about you?
Is your church inclusive?
Take this survey on religion and access....it may raise your awareness as to the issues involved in providing inclusion, which involve religious education, participation in service work and having materials available in braille, among other things.
Another very important point the survey makes is distributing the message to nearby communities that all are welcome at your church in printed materials, as well as making folks aware of the accommodations available.
Another very important point the survey makes is distributing the message to nearby communities that all are welcome at your church in printed materials, as well as making folks aware of the accommodations available.
Disability etiquette
Some resources developed as a result of working with people with disabilities who are doing service work....general guidelines for those who are worried about saying or doing the wrong thing....
Friday, December 8, 2006
Rolling, rolling, rolling...
People are always commenting about how everything in my house rolls. It's true.
I have a rolling bookstand, rolling tables, rolling appliances, rolling bed, rolling carts, and of course rolling wheelchairs. It makes life easier for me and the people who help me.
Some people wonder out loud to me what it's like to live life on wheels. It's actually fun much of the time. It's a different way of getting around and of doing things, that's all.
My first wheelchair was red. It had a Tasmanian devil horn attached to the front (courtesy of my nephew) so that I could honk at people when I was coming down ramps. I wasn't too skillful with the wheelchair yet and he told me I should warn people when I was on a downhill incline! My speed of going down earned me the nickname rampracer - and the horn came in handy a few times in the first few months since I don't have good grip in my hands to stop the wheelchair. I learned a different way to stop over time.
My second wheelchair was more sporty. I used it to play wheelchair tennis and get around. Within a year, I had acquired a special tennis wheelchair. My next everyday wheelchair was even lighter - then I went to a titanium which weighs about 11 pounds. I've skiied on a sitski, handcycle and tried out sled hockey and other sports.
Basically life does not have to sit still if you're in a wheelchair. As our equipment and access improves, I think it's more a matter of others keeping up with us.
Thursday, December 7, 2006
From the Anchor Hold
In her blog From the Anchor Hold, Karen Marie writes about the importance, as a person with a disability, of being able to give back to her parish as well as receive.
Please stop by and read her other wonderful posts as well.
Please stop by and read her other wonderful posts as well.
Wednesday, December 6, 2006
educating about spinal cord injury
Today my older nephew told me he saw a video in driver's ed (one of those they show the kids to emphasize safety) where the driver was injured and left with a spinal cord injury. He told me that the guy was not a quadriplegic, but that his spinal cord was affected.
I explained to him that being a paraplegic or a quadriplegic is a matter of where the injury is on the spinal cord. The spinal cord is sectioned off into levels such as C for cervical, T for thoracic and L for lumbar, and S for sacral. According to Wikipedia,
"There are 31 spinal cord segments:
8 cervical segments
12 thoracic segments
5 lumbar segments
5 sacral segments
1 coccygeal segment"
The higher the injury, the greater the loss of function; however, the injury varies depending on whether it is a complete/incomplete injury.
Click above for a chart describing the functional goals for various levels of spinal cord injury.
I explained to him that being a paraplegic or a quadriplegic is a matter of where the injury is on the spinal cord. The spinal cord is sectioned off into levels such as C for cervical, T for thoracic and L for lumbar, and S for sacral. According to Wikipedia,
"There are 31 spinal cord segments:
8 cervical segments
12 thoracic segments
5 lumbar segments
5 sacral segments
1 coccygeal segment"
The higher the injury, the greater the loss of function; however, the injury varies depending on whether it is a complete/incomplete injury.
Click above for a chart describing the functional goals for various levels of spinal cord injury.
Gifts and Christmas and gifts....
I absolutely hate Christmas shopping.
Luckily we live in the age of ordering things online, gift certificates and such. It's not that I don't enjoy buying things for others, but it's a distraction from everything else that's going on that I want to enjoy.
I'm sure if I was more organized and less busy I could take care of this before the season was upon us. That's one solution. But I find that the years are going by quicker as I get older. (I swear, it's true).
In any event, my favorite kind of gift to give is one that involves time. For example, I can give time off to the people who help me or I can give my time to others. Time is such a precious commodity in our lives.
I think the only way to revive my enthuasiasm for Christmas gifts is to minimize the material gifts and maximize those like giving time to people.
One mom is truly fed up with the materialism of the holidays. She had her son arrested for opening up and playing with his Christmas gift early.
Tuesday, December 5, 2006
Rescued dog saves elderly couple from snow storm....
This couple has devoted themselves to rescuing and caring for animals. Shana, a dog they rescued, came to their aid recently.
"God is watching," the 81 year old couple told reporters.
"God is watching," the 81 year old couple told reporters.
Upbeat after bad news? Perhaps it's shock...
This is an interesting article about how when parents find out their child has a disability, their initial upbeat attitude can result in being alone with the problem afterwards.
I've met alot of people who berate themselves for going through a grief process after they receive difficult news. Our society sometimes denies us those healing processes due to cultural mores.
As members of a church, we can help families and individuals coping with such situations by understanding that grief is not a linear process. Prayers, the offer to listen to them for ten minutes and hands on support such as meals, can prove invaluable to such folks as they journey through their individual process.
Monday, December 4, 2006
Jehovah's Witnesses meet Wheelie Catholic
Last Saturday, two Jehovah's witnesses , one male and one female, stopped by. They introduced themselves as neighbors and then (attempted to) hand me pamphlets. Because of my disability, the pamphlets fluttered to the ground since I couldn't grab them and I smiled and explained I couldn't work my hands.
Undaunted, the male asked me if I knew the Our Father. I nodded and he began to recite the prayer. That was fine. Saying the Our Father is always a good thing. Then he began to explain that the materials contained explananations of how to interpret the Bible and how events in our time indicated Something Important was Happening. He asked if I read the bible. I explained that I just finished a bible study course at my church.
I then explained to them a bit about the Catholic church's disability ministry.
Broad smiles came over their faces as we spoke about that. We had a delightful conversation about creating more inclusion for people with disabilities. Their enthusiasm was refreshing and I was touched by their caring manner.
Of course they do want to convert me which isn't happening. Wheelie Jehovah Witness will have to be someone else, not this quad.
Undaunted, the male asked me if I knew the Our Father. I nodded and he began to recite the prayer. That was fine. Saying the Our Father is always a good thing. Then he began to explain that the materials contained explananations of how to interpret the Bible and how events in our time indicated Something Important was Happening. He asked if I read the bible. I explained that I just finished a bible study course at my church.
I then explained to them a bit about the Catholic church's disability ministry.
Broad smiles came over their faces as we spoke about that. We had a delightful conversation about creating more inclusion for people with disabilities. Their enthusiasm was refreshing and I was touched by their caring manner.
Of course they do want to convert me which isn't happening. Wheelie Jehovah Witness will have to be someone else, not this quad.
Saints and dragons and bears...
Well not really. The part about the bears isn't true.
St. Margaret of Antioch was a virgin martyr. Part of her story is that she was swallowed by the devil in the form of a dragon and that her cross irritated the dragon's innards and he spit her out.
You have to understand that my favorite saints as a kid always involved dragons. What better symbol of conquering evil than a dragon?
But with St. Margaret, the wonderful part of the story is how the small cross she wore irritated the giant beast's insides. It's another David-Goliath story.
My favorite saint and dragon combination is St. George, who agreed to kill a dragon in exchange for conversion, thus rescuing the king's daughter in the process.
To combat stereotypes
...blind models put on fashion show in India. Because blind people are being given menial and boring jobs, they wanted to dispel myths about people with disabilities.
Sunday, December 3, 2006
Ready and willing
It is not the actual physical exertion that counts towards a man's progress, nor the nature of the task, but by the spirit of faith with which it is undertaken.
– St. Francis Xavier
Today both of my nephews came over. My older nephew came to rake leaves up outside and my younger nephew came to visit. However, upon seeing that his older brother was becoming tired, my younger nephew, who has CP, decided that he should help. He wouldn't be talked out of it, so he held a rake as a "wall" to make it easier for my older nephew to scoop up leaves. Then he offered to rake from a chair because, he said, "I don't think I can do it standing."
I politely declined, saying I appreciated his offer, and his older brother said "It's my job. I'll do it." For a moment, the three of us were very quiet. All I could hear was the scraping of the rake my older nephew was using as evening descended upon us.
My younger nephew and I were on the ramp together outside. He piped up "I tried to help but I didn't do much." And I said "You stepped in when your brother was tired and cold and gave him a hand as best you could. That's showing a great spirit."
It is a hard lesson sometimes, when you have a disability, to learn that you cannot always keep up with others or do what they do. But I believe that we can help the child develop a spirit of willingness to help in ways he can and learn to value that effort and attitude.
It is through our spirit of faith that much is accomplished in the realm of what really matters anyway.
– St. Francis Xavier
Today both of my nephews came over. My older nephew came to rake leaves up outside and my younger nephew came to visit. However, upon seeing that his older brother was becoming tired, my younger nephew, who has CP, decided that he should help. He wouldn't be talked out of it, so he held a rake as a "wall" to make it easier for my older nephew to scoop up leaves. Then he offered to rake from a chair because, he said, "I don't think I can do it standing."
I politely declined, saying I appreciated his offer, and his older brother said "It's my job. I'll do it." For a moment, the three of us were very quiet. All I could hear was the scraping of the rake my older nephew was using as evening descended upon us.
My younger nephew and I were on the ramp together outside. He piped up "I tried to help but I didn't do much." And I said "You stepped in when your brother was tired and cold and gave him a hand as best you could. That's showing a great spirit."
It is a hard lesson sometimes, when you have a disability, to learn that you cannot always keep up with others or do what they do. But I believe that we can help the child develop a spirit of willingness to help in ways he can and learn to value that effort and attitude.
It is through our spirit of faith that much is accomplished in the realm of what really matters anyway.
Saturday, December 2, 2006
More ways to celebrate International Day of Disabled tomorrow
1. Light a candle in prayer for people with disabilities struggling with issues of inequality, lack of access and poverty around the world;
2. Support an organization such as the free wheelchair mission, that provides free wheelchairs to people in third world countries, by clicking above. In third world countries, obtaining a wheelchair is only a dream for most people who need them. This organization has devised a chair they can assemble for under $45. Any donation of any amount helps them out.
2. Support an organization such as the free wheelchair mission, that provides free wheelchairs to people in third world countries, by clicking above. In third world countries, obtaining a wheelchair is only a dream for most people who need them. This organization has devised a chair they can assemble for under $45. Any donation of any amount helps them out.
Technological bling....
Being a quadriplegic can be frustrating at times.
The simplest things become a hassle. Calling people on the phone, for instance. What good is a receiver if you can't hold it? Why would you want tiny push buttons when you can't aim accurately at them?
Luckily, there is the technological bling.
For instance, the RC 200 Ameriphone for people with limited mobility - ie quads.
It has no receiver. It's a speakerphone that is voice activated. You don't have to dial anyone at all - just scan through pre programmed numbers or if you add the voice dialing card, say their name. And, best of all, you don't have to go through an operator (yaay) to dial new numbers. With the vocally dialing card, all you do is add the name and number of the person you need to dial (even if its your first call to them). You can erase it later if you're just calling someone once - who cares? The phone stores up to 60 numbers! Heck, for that matter, leave them on there.
I just received an RC 200 . I've heard they are given to people for free in certain states (if you have a disability that limits your mobility). Not where I live and not in most places. This is the first time in years that I can call someone without struggling to dial with some kind of stick in my mouth - after five or so tries, that gets really old, especially when you call a person and he/she gives you someone else to call when you're working.
So watch out world - I may be calling people just for the heck of it!
Why everyone should have a wheelchair tennis doubles partner....
Not everyone has a wheelchair tennis doubles partner.
I realize that those of you who aren't fortunate enough to have ever played wheelchair tennis doubles with someone have lost out on this special relationship. It's too bad really.
Because when I played wheelchair tennis doubles with the same partner for three years, we formed a very special bond. There's something about chasing down a small tennis ball in a wheelchair with not one, but two people rolling around (and possibly straight into each other) that forces you to develop exquisitely good communication.
Together we experienced absolutely inconsolable moments of loss and glorious victories. I remember one match at USTA Center in Flushing NY when we played in 100 degree temperatures with planes flying overhead (that's part of the charm of that venue) and, by the third set, I was overheating terribly, quadriplegic that I am. I went to the side and chugged water. My partner asked me if I could go on with the match.
I looked at her and said "I can't not go on with this match." At the next break, she asked me again. I replied "I am not retiring from this match." When we won the match with a close score, she hugged me and said "I thought you weren't going to make it." When I told her that I was determined to finish the match, she replied "No, I thought you were going to die out there!" I laughed and said "We won, didn't we?"
Ha. That was the last time she ever asked me if I could go on with the match.
In the end what I was left with was a person who understood me and how I reacted in adversity as well as when I was accepting a trophy.
So now when I talk to my wheelchair tennis doubles partner, she is an invaluable resource. There is no getting around the fact that she knows me better than ninety nine per cent of the rest of the world ever will.
Friday, December 1, 2006
Ways to Celebrate International Day of Disabled On December 3rd...
Some ideas:
1. Pick one disability and learn about it online.
2. Have a discussion with your children about disability awareness, Be prepared to answer their questions (they will have some!)
There are many wonderful resources online. Please feel free to email me for online links if you are looking for specific information. I'll be happy to help.
1. Pick one disability and learn about it online.
2. Have a discussion with your children about disability awareness, Be prepared to answer their questions (they will have some!)
There are many wonderful resources online. Please feel free to email me for online links if you are looking for specific information. I'll be happy to help.
What's with all the purple?
Jimmy Akin's blog has a great Advent post . He refers readers to The Catholic Home (eyes right) by Meredith Gould for ways to celebrate this special time.
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