It may not be the catchiest name, but it's a great idea to solve a truly American problem.
You see, in this country, we've become used to volunteering only through organizations. We like structure. We like titles. Heck, we like wearing pins, caps and t shirts with names of organizations we belong to on them.
On the other hand, some of us have issues with doing anything "extra" when approached on an individual basis. Whether it's at our job or on our own time, there's a resistance to being the one who has to go that extra mile.
I see this when I go out to eat alone and need my food cut up. The typical scenario involves ordering food, asking the wait person to have the food cut up in bite size pieces, and receiving the plate without the food cut up or cut up in fourths. I then repeat my request, the food is sent back and returned cut up in eighths. By the time I hail down the waitress and this geometrical slicing goes on, my food begins to resemble something out of Mommie Dearest. It's cold and unappetizing. Apparently the chef is the only one who is allowed to cut anything up, much like a surgeon in an operating room. The whole experience makes eating out resemble something like a bad day in Hell's Kitchen.
At that point I look around to see if there are any families with lots of young children around to see if I can surreptitiously pass my plate along for them to cut up the food, hoping they won't notice it's not for one of their kids.
Scenarios like this make me wish I could bring the Ginzu knife guy with me. He would have my food cut up in under a minute and put on quite a show for fellow diners at the same time. Or I could bring Super Nanny, who could go out to the kitchen and explain that just getting me started on cutting my food up really won't motivate me to overcome my paralysis, it's not practical and by gosh there's a chart she can draw up to illustrate all of this. Sigh.
The real solution, I believe, is to create a group of volunteers - official volunteers - who could wear pins when they go out to dine to indicate they're willing to help. After my food is served, I could look around, find a member of Food Cutter Uppers, bring them my plate and - voila! I'd be all set without asking anyone else to do anything "extra". To make this appealing, the group could offer accessories, such as a belt that members could put a notch in for each plate of food cut up. They could run trips, where members and quads could go together. I'd be happy to go along so that members would have an opportunity at every meal to add notches to their belts. That's three meals a day, three notches. What a deal.
This idea may not appeal to those who feel we're already inundated with organizations to help each other when we could simply just- help each other. I know, I know.
But we seem to need yet one more organization because, despite all this volunteering that goes on, I'm telling you - not one is around, it seems, when you need your food cut up.
11.28.2009
Chinese inventor creates The Walking Chair
A Chinese man, 65-year-old Beijing resident Li Rongbiao , used his pension money and sold his house to invent a power wheelchair that can go up stairs and also works on flat ground. It sells for about $1500.
However, the building of the chair took a bit of time since Rongbiao first had to handle all the basics. Thus, he taught himself computer designing for 6 months before spending the rest of the year constructing his dream chair.
However, the building of the chair took a bit of time since Rongbiao first had to handle all the basics. Thus, he taught himself computer designing for 6 months before spending the rest of the year constructing his dream chair.
11.27.2009
What love has wrought
Gary Presley, the author of Seven Wheelchairs: A Life Beyond Polio, writes about meeting and marrying his wife in this piece. He candidly talks about issues of physical dependence, expectations and feeling as if he is "a chore, an obligation", as well as the day she brought him a ring and simply said "See if it fits". And he writes about what love has wrought.
Gary Presley's book can be purchased at Amazon.
Gary Presley's book can be purchased at Amazon.
11.26.2009
A Thanksgiving quote
Not what we say about our blessings, but how we use them, is the true measure of our thanksgiving.
--WT Purkiser
With gratitude to all of you, friends and readers, I wish a Happy Thanksgiving to everyone!
11.25.2009
Creating inclusive faith communities: a journey
One of my readers left a comment on the last post about his negative experiences with organized religion as a person with a disability and asked if I would write about my experiences. I, too, have had negative experiences, but have had some positive ones as well. Nevertheless, we have a long way to go regarding the negative attitudes toward disability found in our churches that mirror those in our society. Friends laugh nervously when I say I've been treated just as badly trying to leave church after Mass is over as getting out of Wal-Mart -- Christian love not abiding!
One reason I started this blog was to address issues that continue to exclude people with disabilities. We also have a long way to go regarding interfaith efforts and practicing tolerance toward each other, as other commenters noted. Any kind of exclusion is wrong.
My Christian Catholic faith has brought me through some very rough times. My faith is a deep and abiding part of who I am and will always be a part of me. It is a faith of the heart that often can't be explained to others and often very different than what shows up as organized religion. Organized religion can be -- and has been -- used to label people, to separate them, to exclude them. It contains hierarchies and abuses of power, such as sexual abuse in the Catholic, as well as other church denominations. Such things run so contrary to my beliefs that at times I, too, have questioned how to write this blog ; how to reconcile being a disability advocate with being a member of an organized religion.
It can be quite frustrating for me to find myself, on any given day, with an email box full of comments from Catholics complaining that I'm too liberal as well as comments from people with disabilities claiming I'm too conservative. Yet anyone who thinks nondisabled Catholics are always comfortable with the Roman Catholic church, should try talking to a few of them. I can think of some Catholic politicians who are feeling pretty uncomfortable too.
As a disability advocate , I can't ignore disconnects between the Catholic church as an institution and some disability issues. I've written about this at times. The divergence of catholic with a small c (i.e., “universal”) and Catholic with a capital C (i.e., “Catholic church”) looms large at times. I have been told on numerous occasions -- sometimes by Catholic bloggers -- that I'm going straight to hell because of stands I've taken. It is a sad state of affairs in a nation with religious and political freedom to have so many people telling each other what to think, what to believe, how to vote and raising the flag of heresy at the first sign of disagreement. They're worse than the safety hall monitors at my Catholic elementary school!
My faith is an integral part of who I am and always will be, but I firmly believe in the separation of church and state. I'm not here to convince anyone to become a Catholic or to defend the Catholic church as an institution for any of its failings. My faith is catholic, with a small c. At the heart of my faith is concern for all humankind.
I have readers of many faiths and all are welcome. What matters to me, bottom line, is that all people -- including those with disabilities -- be able to exercise freedom of religion and have access to practice the faith they choose, how and where they choose.
To reflect this, I'm changing my blog‘s name to WHEELIE cATHOLIC. I hope the small c will stand as a welcome sign to all and create an atmosphere of openness and tolerance.
I truly welcome readers of all faiths expressing either positive or negative experiences with organized religion. After all, where would they go with such comments other than a blog like this? There are many nondisabled people of faith who read this blog. Some lurk and say nothing, but they are here because they are working toward creating better faith communities of all kinds. Every time a person with a disability shares his or her experiences, it matters.
So, I thank my readers for respectful comments and questions. As a Quaker friend of mine says, we are all seekers.
May we each find the spirit that will lead us in our lives to peace, justice and harmony. More importantly, may we never block the opportunity for someone else to find that spirit.
One reason I started this blog was to address issues that continue to exclude people with disabilities. We also have a long way to go regarding interfaith efforts and practicing tolerance toward each other, as other commenters noted. Any kind of exclusion is wrong.
My Christian Catholic faith has brought me through some very rough times. My faith is a deep and abiding part of who I am and will always be a part of me. It is a faith of the heart that often can't be explained to others and often very different than what shows up as organized religion. Organized religion can be -- and has been -- used to label people, to separate them, to exclude them. It contains hierarchies and abuses of power, such as sexual abuse in the Catholic, as well as other church denominations. Such things run so contrary to my beliefs that at times I, too, have questioned how to write this blog ; how to reconcile being a disability advocate with being a member of an organized religion.
It can be quite frustrating for me to find myself, on any given day, with an email box full of comments from Catholics complaining that I'm too liberal as well as comments from people with disabilities claiming I'm too conservative. Yet anyone who thinks nondisabled Catholics are always comfortable with the Roman Catholic church, should try talking to a few of them. I can think of some Catholic politicians who are feeling pretty uncomfortable too.
As a disability advocate , I can't ignore disconnects between the Catholic church as an institution and some disability issues. I've written about this at times. The divergence of catholic with a small c (i.e., “universal”) and Catholic with a capital C (i.e., “Catholic church”) looms large at times. I have been told on numerous occasions -- sometimes by Catholic bloggers -- that I'm going straight to hell because of stands I've taken. It is a sad state of affairs in a nation with religious and political freedom to have so many people telling each other what to think, what to believe, how to vote and raising the flag of heresy at the first sign of disagreement. They're worse than the safety hall monitors at my Catholic elementary school!
My faith is an integral part of who I am and always will be, but I firmly believe in the separation of church and state. I'm not here to convince anyone to become a Catholic or to defend the Catholic church as an institution for any of its failings. My faith is catholic, with a small c. At the heart of my faith is concern for all humankind.
I have readers of many faiths and all are welcome. What matters to me, bottom line, is that all people -- including those with disabilities -- be able to exercise freedom of religion and have access to practice the faith they choose, how and where they choose.
To reflect this, I'm changing my blog‘s name to WHEELIE cATHOLIC. I hope the small c will stand as a welcome sign to all and create an atmosphere of openness and tolerance.
I truly welcome readers of all faiths expressing either positive or negative experiences with organized religion. After all, where would they go with such comments other than a blog like this? There are many nondisabled people of faith who read this blog. Some lurk and say nothing, but they are here because they are working toward creating better faith communities of all kinds. Every time a person with a disability shares his or her experiences, it matters.
So, I thank my readers for respectful comments and questions. As a Quaker friend of mine says, we are all seekers.
May we each find the spirit that will lead us in our lives to peace, justice and harmony. More importantly, may we never block the opportunity for someone else to find that spirit.
11.24.2009
A Place for All;: Faith and Community for Persons with Disabilities (Trailer)
via YouTube
The documentary A Place for All: Faith and Community for Persons with Disabilities explores the courageous stories of persons with disabilities as they succeed in making their faith communities truly inclusive. It features people such as Rabbi Darby Jared Leigh, a spiritual leader at Congregation Bnai Keshet in New Jersey and one of the handful of deaf rabbis in the world; members of ELCAs DAYLE program where Definitely Abled Youth unite at the 40,000 strong triennial Evangelical Lutheran youth gathering; Rev. Beth Lockard, the pastor of Christ the King Deaf Church; and Brandon Kaplan, a severely disabled boy with limited sight and speech who recently had the privilege of becoming a Bar Mitzvah.
The documentary A Place for All: Faith and Community for Persons with Disabilities explores the courageous stories of persons with disabilities as they succeed in making their faith communities truly inclusive. It features people such as Rabbi Darby Jared Leigh, a spiritual leader at Congregation Bnai Keshet in New Jersey and one of the handful of deaf rabbis in the world; members of ELCAs DAYLE program where Definitely Abled Youth unite at the 40,000 strong triennial Evangelical Lutheran youth gathering; Rev. Beth Lockard, the pastor of Christ the King Deaf Church; and Brandon Kaplan, a severely disabled boy with limited sight and speech who recently had the privilege of becoming a Bar Mitzvah.
Jetstar working on alternative boarding procedure for wheelchair users...
.after Paralympian Kurt Fearnley refused to be pushed through the airport and crawled to the plane boarding area.
Jetstar said it was its current policy that wheelchair users check in their personal wheelchairs as luggage, then have them pushed to the boarding gate in a wheelchair designed by planes by a staff member.
Fearnley, who just completed a 60 mile crawl in the Papua New Guinea jungle, chose the alternative of crawling as a protest after staff insisted on taking his personal wheelchair away from him.
The airline issued an apology and Paralympian Fearnley said he was happy as long as they are "going ahead" with an alternative boarding policy for disabled passengers.
Fearnley also won the NY City Marathon and is shown in his racing chair in the photo above.
11.23.2009
Clearing Hurdles in a Wheelchair, by Emily McQueen
via YouTube
Clearing Hurdles in a Wheelchair: Emily McQueen shares her story of personal triumph and becoming involved in competitive wheelchair racing.
Clearing Hurdles in a Wheelchair: Emily McQueen shares her story of personal triumph and becoming involved in competitive wheelchair racing.
11.21.2009
Randy Snow, RIP
Randy Snow, a renown wheelchair athlete, passed away Thursday in El Salvador where he was giving tennis clinics. A paralympic athlete, Randy competed in three sports and won medals in each. He was inducted into the US Olympic Hall of Fame in 2004. Randy worked for the Lakeshore Foundation, teaching sports to kids and those who recently acquired disabilities. He was 50 years old.
The Lakeshore Foundation family is profoundly saddened by this loss,” said Lakeshore President Jeff Underwood. “Randy exemplified the belief that every individual, no matter what their level of ability is able to achieve greatness. As a champion of the Paralympic movement, he soared past the public's expectations. Randy was a hero, an advocate, a spokesperson and more than anything else, a beloved friend. He will be greatly missed.” via foxalabamanews.com
I last saw Randy down at a tournament in Hilton Head some years ago, although I met him a number of times. His kindnesses to so many are the memories that stand out in my mind as well as his mantra "There is no excuse!" Every time I ran into him, I was touched by how he sincerely cared about others' quality of life. He spent his time off court teaching newly disabled athletes in a gracious and generous manner and personally came over and helped them with suggestions for adjusting their wheelchairs.
His enthusiasm and love for wheelchair sports was contagious and he affected peoples' lives on an international basis, spreading that love everywhere he went.
Rest in peace, Randy.
Not just for quadriplegics...
Intel is predicting that chips in brains will control computers by 2020. Scientists believe people want freedom from their keyboards and will adapt to new ways to use technology.
Scientists at Intel's research lab in Pittsburgh are working to find ways to read and harness human brain waves so they can be used to operate computers, television sets and cell phones. The brain waves would be harnessed with Intel-developed sensors implanted in people's brains.
To read other articles using similar technology, see this link.
Scientists at Intel's research lab in Pittsburgh are working to find ways to read and harness human brain waves so they can be used to operate computers, television sets and cell phones. The brain waves would be harnessed with Intel-developed sensors implanted in people's brains.
To read other articles using similar technology, see this link.
11.20.2009
60th Disability Blog carnival is up!
You can find it right here.... I'm short on time , but encourage you to check it out and maybe submit for the next one if you're out there blogging. It's a great way to make your blog known to others!
Control your wheelchair ? Got an app for that!
via iPhone Alley:
A new iPhone application from Dynamic Controls would turn an iPhone into a sophisticated remote control for the company's electric wheelchairs. The application would connect to the chair over Bluetooth, and allow the rider to control several aspects of the chair in an intuitive and cool looking interface.
You can read the rest here.
A new iPhone application from Dynamic Controls would turn an iPhone into a sophisticated remote control for the company's electric wheelchairs. The application would connect to the chair over Bluetooth, and allow the rider to control several aspects of the chair in an intuitive and cool looking interface.
You can read the rest here.
11.19.2009
When We don't Speak Up for Each Other
Mark has written an excellent post on how our failure to speak up as a community can lead to legislation being passed (and other events) that are not in our best interest. He notes how the I got mine attitude toward obtaining wheelchairs- and other things- is dooming us toward an uncertain future.
An overall lack of accountability by those of us with disabilities to advocate for our needs is eroding access to even basic services. Currently, there’s proposed legislation to further devastate mobility funding via a tax, but few with disabilities have spoken against it. Similarly, positive legislation like the Community Choice Act for increased in-home care funding is vital to those with disabilities, but few with disabilities have spoken to support it. Our lack of voice tells legislators that we’re passive at best, and willing targets at worst. Capitol Hill can do what it wishes, knowing that we don’t advocate for our own interests.
He urges people to get involved, speak up and write your congressman when legislation that affects our issues is pending.
Write to your elected officials regarding the struggles of obtaining vital resources like funding for mobility and in-home care, be an engaged member in on-line disability communities for change, and encourage others with disabilities to get involved with you. You need to stay informed of the pressing issues of today – the Community Choice Act toward in-home care, Medicare cuts in catheter coverage, and the proposed further cuts and taxing of wheelchairs, to name just three issues – and get involved as a voice of advocacy. That is, live up to your obligation to be a contributing member to the disability community at large.
Every week there is legislation that is pending which affects the vital interests of the disability community. Think large, think outside your own individual situation, as Mark urges. There is autism legislation. There are bloggers who are blind and deaf who bring our attention to issues. And on and on. Check out JFActivist. Did you know there is a Disability Coalition on Health Care reform? There's so much information readily available online via blogs that just setting up your google reader or a daily email search on "disability" helps keep you informed- for free.
If you're nondisabled, I'm addressing you too. These changes affect all of us, our parents, brothers, sisters, friends. Our children.
I've faced my own individual struggles in getting equipment and care. My nephew faces a future of high costs in treatment with his disability as well. We know, because we are both in one family, that our individual struggles are related. But we are all part of a bigger family. Perhaps my love for him has taught me that, among other things I needed to learn. Our differences in disabilities doesn't matter. Here's what does.
Each of us is a statistic, unfortunately, to some of the people making these decisions. They don't look into our eyes when we are hungry because there is no one to cut up our food. They don't realize that legislation like the Community Choice Act would keep us out of nursing homes- because they may not know any of us who fall into that category or be able to imagine it ever happening to them. Needing a wheelchair? They don't know what that's like. No access to housing or transportation? It's far too easy for people who have never faced these issues to blame the individual. As long as this is seen as an individual struggle (or under the charity model as a misfortune), we will never make progress.
Then think about our moral obligation to those who can't speak for themselves. When I don't speak up or you don't speak up, you fail to speak for those who can't. Some of our brothers and sisters can't advocate for themselves. Use your voice if you have one. Use your hands if you can. Use your legs - use what you have to help those who need you - yes need you- to work toward a better future.
It's so much easier for me to get this when I look into my nephew's eyes, when I see how he works so hard at school and how every single accommodation he gets is so precious and necessary to his future. He will never be a statistic to me and I will never be a statistic to him.
Who better to speak for each other, my friends, than us?
An overall lack of accountability by those of us with disabilities to advocate for our needs is eroding access to even basic services. Currently, there’s proposed legislation to further devastate mobility funding via a tax, but few with disabilities have spoken against it. Similarly, positive legislation like the Community Choice Act for increased in-home care funding is vital to those with disabilities, but few with disabilities have spoken to support it. Our lack of voice tells legislators that we’re passive at best, and willing targets at worst. Capitol Hill can do what it wishes, knowing that we don’t advocate for our own interests.
He urges people to get involved, speak up and write your congressman when legislation that affects our issues is pending.
Write to your elected officials regarding the struggles of obtaining vital resources like funding for mobility and in-home care, be an engaged member in on-line disability communities for change, and encourage others with disabilities to get involved with you. You need to stay informed of the pressing issues of today – the Community Choice Act toward in-home care, Medicare cuts in catheter coverage, and the proposed further cuts and taxing of wheelchairs, to name just three issues – and get involved as a voice of advocacy. That is, live up to your obligation to be a contributing member to the disability community at large.
Every week there is legislation that is pending which affects the vital interests of the disability community. Think large, think outside your own individual situation, as Mark urges. There is autism legislation. There are bloggers who are blind and deaf who bring our attention to issues. And on and on. Check out JFActivist. Did you know there is a Disability Coalition on Health Care reform? There's so much information readily available online via blogs that just setting up your google reader or a daily email search on "disability" helps keep you informed- for free.
If you're nondisabled, I'm addressing you too. These changes affect all of us, our parents, brothers, sisters, friends. Our children.
I've faced my own individual struggles in getting equipment and care. My nephew faces a future of high costs in treatment with his disability as well. We know, because we are both in one family, that our individual struggles are related. But we are all part of a bigger family. Perhaps my love for him has taught me that, among other things I needed to learn. Our differences in disabilities doesn't matter. Here's what does.
Each of us is a statistic, unfortunately, to some of the people making these decisions. They don't look into our eyes when we are hungry because there is no one to cut up our food. They don't realize that legislation like the Community Choice Act would keep us out of nursing homes- because they may not know any of us who fall into that category or be able to imagine it ever happening to them. Needing a wheelchair? They don't know what that's like. No access to housing or transportation? It's far too easy for people who have never faced these issues to blame the individual. As long as this is seen as an individual struggle (or under the charity model as a misfortune), we will never make progress.
Then think about our moral obligation to those who can't speak for themselves. When I don't speak up or you don't speak up, you fail to speak for those who can't. Some of our brothers and sisters can't advocate for themselves. Use your voice if you have one. Use your hands if you can. Use your legs - use what you have to help those who need you - yes need you- to work toward a better future.
It's so much easier for me to get this when I look into my nephew's eyes, when I see how he works so hard at school and how every single accommodation he gets is so precious and necessary to his future. He will never be a statistic to me and I will never be a statistic to him.
Who better to speak for each other, my friends, than us?
Wheel Life: Wheelchair Dancer and Wheelie Catholic Meet Again
There she was - Wheelchair Dancer at the train station with me in my van, unable to get out because the station has no van access parking. So I call her and ask
"Are you here -at the train station?"
"Yes-"
"Because I'm right behind you - in my van!"
She turns around, smiles, waves and rolls over.
We hit the mall. There is a dare, but I'll let her tell you about that.
Wheelchair Dancer dances in her manual chair, even while she's pushing through a mall. And I cavort in my power chair, zipping in and out of the crowd, Wheelchair Dancer behind me, by my side, slightly ahead saying "Oh I'll let you lead" as the Beast parts rows of bodies like Moses going through the Red Sea.
We land in an elevator in Macy's, with Wheelchair Dancer in one corner, me in the other. I look at her and we burst into laughter. "And in this corner," I say, imitating a boxing official, "we have..." She laughs again. The other passengers hold the door for us. We both back out of the elevator.
Wheelchair Dancer takes off in a burst and I follow, smiling.
Shopping with someone else in a wheelchair is such fun. Being with others in our disability community is - priceless.
"Are you here -at the train station?"
"Yes-"
"Because I'm right behind you - in my van!"
She turns around, smiles, waves and rolls over.
We hit the mall. There is a dare, but I'll let her tell you about that.
Wheelchair Dancer dances in her manual chair, even while she's pushing through a mall. And I cavort in my power chair, zipping in and out of the crowd, Wheelchair Dancer behind me, by my side, slightly ahead saying "Oh I'll let you lead" as the Beast parts rows of bodies like Moses going through the Red Sea.
We land in an elevator in Macy's, with Wheelchair Dancer in one corner, me in the other. I look at her and we burst into laughter. "And in this corner," I say, imitating a boxing official, "we have..." She laughs again. The other passengers hold the door for us. We both back out of the elevator.
Wheelchair Dancer takes off in a burst and I follow, smiling.
Shopping with someone else in a wheelchair is such fun. Being with others in our disability community is - priceless.
11.18.2009
Lady Vols: expected to excel on court and in the classroom
After an early exit from the playoffs last season, Coach Pat Summitt and her staff worked hard to prepare this year's Lady Vols women's basketball team for the upcoming season. Team members were given summer workout programs with an emphasis on both physical and mental toughness. This video on Iron Will, showing staff member Heather Mason working with team members, shows the serious preparation the team put in.
It's paid off. The Lady Vols are now 2-0, starting out with two wins over Big 12 teams, and continue to rise in the rankings after starting at number eight. Their first victory came over Baylor's Lady Bears, who showed up with the much touted freshman Brittney Grimer, a YouTube dunking phenom. There was no time for dunking as the Lady Vols shut down Baylor 74-65. Grimer got into foul trouble and spent the second half of the game trying to figure out how to deal with playing from that position in her first college game.
Last night the Lady Vols beat Texas Tech handily (91-53), despite leaving two team members home in Knoxville. Coach Summitt wouldn't let Kamiko Williams or Alyssia Brewer travel with the team. Why? Classroom issues, said the head coach, reminding us all that this is college sports. This is one of the reasons why I really like the Lady Vols program.
It's paid off. The Lady Vols are now 2-0, starting out with two wins over Big 12 teams, and continue to rise in the rankings after starting at number eight. Their first victory came over Baylor's Lady Bears, who showed up with the much touted freshman Brittney Grimer, a YouTube dunking phenom. There was no time for dunking as the Lady Vols shut down Baylor 74-65. Grimer got into foul trouble and spent the second half of the game trying to figure out how to deal with playing from that position in her first college game.
Last night the Lady Vols beat Texas Tech handily (91-53), despite leaving two team members home in Knoxville. Coach Summitt wouldn't let Kamiko Williams or Alyssia Brewer travel with the team. Why? Classroom issues, said the head coach, reminding us all that this is college sports. This is one of the reasons why I really like the Lady Vols program.
Lady Vols' head coach Pat
"When you come here, you go to class, you sit up and pay attention, you sit in the front three rows. If you don't, understand that you don't play." via volunteertv.com
Way to go, Lady Vols.11.16.2009
The Washington Post Glee reader poll
Imagine my chagrin as I read a piece in the Washington post about why disability advocates are cringing about the failure to cast disabled actors in disabled roles, when I came to the end to a poll that contained the inherent assumption that hiring a disabled actor meant - get this- sacrificing quality of performance.
The readers' choices in the poll are about whether Glee should be given a "pass" for not having hired a disabled actor. The Yes answer reads that hiring someone with a disability would have "sent a vital message and signaled support for the disability community"
Wow. How touchy feely. How- charity-model-like.
The No answer reads : It's more important that the role be so expertly played that nobody even stops to wonder about whether the actor who plays it uses a wheelchair in real life.
To date, 85% voted no and 15% voted yes out of 39 votes.
Notice, however, how the answer "No" builds in the assumption (yet again) that there isn't a disabled actor who could play it so expertly. It implies sacrificing a quality in the performance if a disabled actor was hired. There's also this "one of us" implication in there about no one stopping to wonder whether the actor who plays it really uses a wheelchair in real life.
On the other hand, the 'Yes' answer implies that hiring a disabled actor would be just for politically correct reasons.
This wording discounts the achievements of those of us with disabilities who are out there succeeding and, in some cases, doing things better than able bodied counterparts. This whole discussion ignores the huge unemployment figures for the disability community.
It doesn't mention that job interviews for wheelchair using friends of mine are still scheduled in non accessible buildings. It doesn't mention that headhunters refuse to represent some disabled people with experience. None of the reasons why disability advocates protest hiring an able bodied actor to play a disabled role are mentioned, such as the fact that there are wheelchair using actors who could do the role better and do it right. We are nowhere near accurately portraying a disabled character in Hollywood because it reflects our societal mores and it is still a society that excludes people with disabilities.
The real irony of all this? McHale, the actor who plays Artie, can't dance in a wheelchair even though the role calls for dancing as well as singing. He's their "expert".
The readers' choices in the poll are about whether Glee should be given a "pass" for not having hired a disabled actor. The Yes answer reads that hiring someone with a disability would have "sent a vital message and signaled support for the disability community"
Wow. How touchy feely. How- charity-model-like.
The No answer reads : It's more important that the role be so expertly played that nobody even stops to wonder about whether the actor who plays it uses a wheelchair in real life.
To date, 85% voted no and 15% voted yes out of 39 votes.
Notice, however, how the answer "No" builds in the assumption (yet again) that there isn't a disabled actor who could play it so expertly. It implies sacrificing a quality in the performance if a disabled actor was hired. There's also this "one of us" implication in there about no one stopping to wonder whether the actor who plays it really uses a wheelchair in real life.
On the other hand, the 'Yes' answer implies that hiring a disabled actor would be just for politically correct reasons.
This wording discounts the achievements of those of us with disabilities who are out there succeeding and, in some cases, doing things better than able bodied counterparts. This whole discussion ignores the huge unemployment figures for the disability community.
It doesn't mention that job interviews for wheelchair using friends of mine are still scheduled in non accessible buildings. It doesn't mention that headhunters refuse to represent some disabled people with experience. None of the reasons why disability advocates protest hiring an able bodied actor to play a disabled role are mentioned, such as the fact that there are wheelchair using actors who could do the role better and do it right. We are nowhere near accurately portraying a disabled character in Hollywood because it reflects our societal mores and it is still a society that excludes people with disabilities.
The real irony of all this? McHale, the actor who plays Artie, can't dance in a wheelchair even though the role calls for dancing as well as singing. He's their "expert".
11.15.2009
For my nephew...
..who is feeling a bit under the weather. I found this video made by Chris about a trip to ToysRUs and it reminded me of our good times!
Exercising from a wheelchair: the VitaGlide
One of my wheelchair tennis friends decided to buy a VitaGlide for her home after seeing positive reviews of it on message boards in the disability community. It's a piece of exercise equipment that wheelchair users can roll up to and use to get a good cardio workout. The VitaGlide, made in a tapered shape, surrounds the wheelchair and has handles on each side. The user pushes and pulls those back and forth repeatedly.
People say they are losing weight and building up shoulder and back muscles. This, among other things, it is claimed, helps to correct muscle imbalances which can prevent injury. They say it also helps improve the ability to push a wheelchair and do other tasks. I've never used one, so can't attest to any of this,but feel free to check around the internet for feedback from people who have used it.
This is the kind of equipment that would be a great addition to gyms as well as in home use. It sells for about a thousand dollars, can be used independently by wheelchair users and adapted with specialized grips for those with quadriplegia.
A video is shown below.
11.13.2009
Glee wheelchair episode: not gleeful
Glee decided to put on a show in an attempt to fix the ongoing dilemma they created by casting a nondisabled actor in a wheelchair role (Artie). Their reasoning? They tried, they really tried, but could not find even one talented really disabled actor who could sing and dance. Hmm. Maybe the able bodied actor they hired instead can sing a bit, but he sure can't dance in a wheelchair - but more to that point later.
In this episode, to show that they are sensitive to disability issues, Glee put all the other able bodied cast members in wheelchairs too. Not very original, but maybe they thought doing it en masse would have a good visual effect. It didn't work except to compound their error. But from their ableist point of view- hey why not? The rest of the cast is no more disabled than Artie.
But on to the dancing, which, personally I'd rather forget. If you haven't seen it, I suggest you avoid it at all costs, because images of able bodied people rolling around ramps on a stage looking as if they're afraid of falling off will remain seared in your mind forever. (I wonder if anyone has considered the liability implications of putting inexperienced actors in wheelchairs on ramps on a stage. Probably not. Another good reason to hire actors who really do use a wheelchair.)
I refuse to put a video up here because I've seen real wheelchair dancing. Actually I've seen better wheelchair dancing at wheelchair tennis tournament banquets by an 11 year old kid. Probably because he uses a wheelchair every day.
I'm no dancer, so let's bring in a professional one. According to Wheelchair Dancer, the choreography sucks.
And then there's the sad fact of the "dancing;" the choreography sucks. The one potentially interesting move that McHale supposedly "does" is a cut -- he wheelies on one rear wheel. The rest is notable only for the way that it shows that able-bodied, non-wheelchair-using folk really do think of chairs as bicycles you move with your arms. There's absolutely no body-chair integration at all. They think of sitting in a chair as being only about not being able to move their legs (and in Artie's case as being about having his hips and legs twisted to one side). That mistaken understanding leads to some very weird looking people in chairs. On chairs would be a better phrase for it. The fake paralysis of their legs somehow wends its way up their bodies so that they are really only able to push with their elbows (no wonder they have sore arms!).
Sigh. If only they had asked a wheelchair dancer or choreographer for help or - here's a thought- used real wheelchair dancers! I hate it when able bodied people just don't ask for help before pretending to be disabled. Things always get screwed up that way.
All I can say is that Glee is in a fine mess now. The real problem with this show, as with the rest of Hollywood, is that it keeps insisting on portraying an able bodied version of characters with disabilities. Writing an episode on sensitivity toward a character who doesn't really have a disability to convince those of us who really have disabilities that the show is enlightened just isn't going to work. Nor did the subplot of a girl with a stutter confessing she really doesn't have a stutter help. It's all very confusing and gave me a headache.
Here's what I suggest. Since the show decided a sing-off was fair between two characters, why not bring in a wheelchair user to sing and dance against Artie?
Then we might see some real wheelchair dancing, like this.
In this episode, to show that they are sensitive to disability issues, Glee put all the other able bodied cast members in wheelchairs too. Not very original, but maybe they thought doing it en masse would have a good visual effect. It didn't work except to compound their error. But from their ableist point of view- hey why not? The rest of the cast is no more disabled than Artie.
But on to the dancing, which, personally I'd rather forget. If you haven't seen it, I suggest you avoid it at all costs, because images of able bodied people rolling around ramps on a stage looking as if they're afraid of falling off will remain seared in your mind forever. (I wonder if anyone has considered the liability implications of putting inexperienced actors in wheelchairs on ramps on a stage. Probably not. Another good reason to hire actors who really do use a wheelchair.)
I refuse to put a video up here because I've seen real wheelchair dancing. Actually I've seen better wheelchair dancing at wheelchair tennis tournament banquets by an 11 year old kid. Probably because he uses a wheelchair every day.
I'm no dancer, so let's bring in a professional one. According to Wheelchair Dancer, the choreography sucks.
And then there's the sad fact of the "dancing;" the choreography sucks. The one potentially interesting move that McHale supposedly "does" is a cut -- he wheelies on one rear wheel. The rest is notable only for the way that it shows that able-bodied, non-wheelchair-using folk really do think of chairs as bicycles you move with your arms. There's absolutely no body-chair integration at all. They think of sitting in a chair as being only about not being able to move their legs (and in Artie's case as being about having his hips and legs twisted to one side). That mistaken understanding leads to some very weird looking people in chairs. On chairs would be a better phrase for it. The fake paralysis of their legs somehow wends its way up their bodies so that they are really only able to push with their elbows (no wonder they have sore arms!).
Sigh. If only they had asked a wheelchair dancer or choreographer for help or - here's a thought- used real wheelchair dancers! I hate it when able bodied people just don't ask for help before pretending to be disabled. Things always get screwed up that way.
All I can say is that Glee is in a fine mess now. The real problem with this show, as with the rest of Hollywood, is that it keeps insisting on portraying an able bodied version of characters with disabilities. Writing an episode on sensitivity toward a character who doesn't really have a disability to convince those of us who really have disabilities that the show is enlightened just isn't going to work. Nor did the subplot of a girl with a stutter confessing she really doesn't have a stutter help. It's all very confusing and gave me a headache.
Here's what I suggest. Since the show decided a sing-off was fair between two characters, why not bring in a wheelchair user to sing and dance against Artie?
Then we might see some real wheelchair dancing, like this.
Being Charlie's mother
This story of a mother of a child with spina bifida speaks candidly of both her struggles and joy in raising her son Charlie. Shannon Cooper writes about her faith as well as the everyday realities of living with spina bifida.
And she speaks about her concerns about the future,which include this:
Being Charlie's mama means knowing children will make fun of him when he starts school because he won't be potty trained, will still wear diapers.
She recognizes Charlie's joy of life and advocates for him to have the best life he can, like all parents. It's really sad, when you read about the loving care Charlie's mom gives him, that she and other parents of children with disabilities still need to be concerned about such things.
And she speaks about her concerns about the future,which include this:
Being Charlie's mama means knowing children will make fun of him when he starts school because he won't be potty trained, will still wear diapers.
She recognizes Charlie's joy of life and advocates for him to have the best life he can, like all parents. It's really sad, when you read about the loving care Charlie's mom gives him, that she and other parents of children with disabilities still need to be concerned about such things.
11.12.2009
Meet the members of the DisAbility Project
via YouTube
Members of The DisAbility Project, a touring theatrical ensemble based in St. Louis, share their stories with an audience of schoolchildren during a performance in the fall of 2009. Some members of the group even use the stage to pitch themselves for a new job. Read more about members of this group and their cause in the Riverfront Times: http://bit.ly/disabilityproject
You can find more performance videos by this group here.
Members of The DisAbility Project, a touring theatrical ensemble based in St. Louis, share their stories with an audience of schoolchildren during a performance in the fall of 2009. Some members of the group even use the stage to pitch themselves for a new job. Read more about members of this group and their cause in the Riverfront Times: http://bit.ly/disabilityproject
You can find more performance videos by this group here.
Excavation point! Excavation point!
One of my friends on Facebook who has a disability just started using voice recognition. As I was answering a message he left, I was thinking about the first time I used Dragon NaturallySpeaking.
Voice recognition has come a long way since I started using it years ago. Earlier versions of Dragon ( I currently use version 9.5) were not as accurate. So I learned to develop a sense of humor about it.
I remember writing a message to a friend and I wanted to emphasize what I was saying with an exclamation point. Unfortunately, Dragon thought I was saying "excavation point" and kept typing "excavation ." As a new user, I didn't understand why the word point in Dragon converted into (.) I now know that certain words are commands and that sometimes Dragon, depending on the context of what is being said, will do things like this. Luckily, command words can be changed.
Keeping a sense of humor while trying out any assistive technology is very important. Otherwise you can lose the point or (.) of the whole thing.
Voice recognition has come a long way since I started using it years ago. Earlier versions of Dragon ( I currently use version 9.5) were not as accurate. So I learned to develop a sense of humor about it.
I remember writing a message to a friend and I wanted to emphasize what I was saying with an exclamation point. Unfortunately, Dragon thought I was saying "excavation point" and kept typing "excavation ." As a new user, I didn't understand why the word point in Dragon converted into (.) I now know that certain words are commands and that sometimes Dragon, depending on the context of what is being said, will do things like this. Luckily, command words can be changed.
Keeping a sense of humor while trying out any assistive technology is very important. Otherwise you can lose the point or (.) of the whole thing.
11.11.2009
11.10.2009
Some things are easy for some of us, some things are hard
Itzhak Perlman visits Sesame Street and talks about easy and hard things with a child philosopher.
h/t AmigoJen via Twitter
h/t AmigoJen via Twitter
An Uncommon Kindness: The Father Damien Story
Last night I watched this documentary about the life and work of Father Damien, now St. Damien. It can be seen over at VodPod for free.
More blogging to come as time permits.
More blogging to come as time permits.
11.09.2009
"Keeping My Hands Free" from The Digital Awakening
Peter Tan has a great post up about how using a bluetooth headset and devices like it help him live more productively with his disability. It highlights how more and more mass produced items are being used by people with disabilities every day - depending on their features, such as ease of putting it on, as in Peter's case.
He writes:
A tiny device such as the bluetooth headset has done wonders to my freedom while I am out and about. It allows me to answer the phone while I am driving. I need both hand to drive – the right for the steering wheel and the left for the accelerator and brake.
He now uses a Jabra model that's easier for him to put on. You can read the entire post at the above link.
He writes:
A tiny device such as the bluetooth headset has done wonders to my freedom while I am out and about. It allows me to answer the phone while I am driving. I need both hand to drive – the right for the steering wheel and the left for the accelerator and brake.
He now uses a Jabra model that's easier for him to put on. You can read the entire post at the above link.
11.07.2009
French parents plan to broadcast life of 32 year old daughter with CP via web
The parents of 32 year old Anne Lamic plan to broadcast her everyday life via the web, saying they want to "allow people to see handicaps in ways that are real, everyday and familiar". They do not plan to film private moments, such as baths and the site includes a warning about her seizures.
Disability advocates disagree, some "dismayed — especially because Anne Lamic, whose family says she has physical and mental abilities comparable to a 1-month-old infant, cannot have a say in the matter", according to the article. Others support it as a way to stop hiding those with disabilities and say that France trails behind the U.S. and Canada "on issues such as visibility and accessibility to public transport and buildings". Still others question why the parents don't take Anne out in public, to which her father, who used to work in a medical care center, said that she needs to be transported by ambulance since she has "to remain lying down".
The website is called Doudou World and can be found here.
Disability advocates disagree, some "dismayed — especially because Anne Lamic, whose family says she has physical and mental abilities comparable to a 1-month-old infant, cannot have a say in the matter", according to the article. Others support it as a way to stop hiding those with disabilities and say that France trails behind the U.S. and Canada "on issues such as visibility and accessibility to public transport and buildings". Still others question why the parents don't take Anne out in public, to which her father, who used to work in a medical care center, said that she needs to be transported by ambulance since she has "to remain lying down".
The website is called Doudou World and can be found here.
Support services offered for those with brain injuries in Massachusetts
Support services for people with brain injuries in Massachusetts are offered for free through BIA-MA, the Brain Injury Association of Massachusetts.
The statistics on brain injuries are startling, according to the CDC, every 21 seconds, one person in the United States sustains a traumatic brain injury and each year nearly 80,000 Americans experience the onset of disabilities resulting from brain injuries. A survivor of severe brain injury will require between $4.1 million and $7 million in lifetime care and hospital costs relating to TBI are estimated to exceed $48 billion annually.
With such frightening statistics, BIA-MA has created support programs located throughout the state to provide survivors and their loved ones with a forum for sharing information, meeting others and participating in a variety of educational, recreational and social activities.
via ojournal.com
You can visit the links above for more information or call their toll free Brain Injury help line at 800-242-0030
The statistics on brain injuries are startling, according to the CDC, every 21 seconds, one person in the United States sustains a traumatic brain injury and each year nearly 80,000 Americans experience the onset of disabilities resulting from brain injuries. A survivor of severe brain injury will require between $4.1 million and $7 million in lifetime care and hospital costs relating to TBI are estimated to exceed $48 billion annually.
With such frightening statistics, BIA-MA has created support programs located throughout the state to provide survivors and their loved ones with a forum for sharing information, meeting others and participating in a variety of educational, recreational and social activities.
via ojournal.com
You can visit the links above for more information or call their toll free Brain Injury help line at 800-242-0030
11.06.2009
One Degree of Separation
The Christopher & Dana Reeeve Foundation has a new online campaign called One Degree of Separation, a name taken from its recent Paralysis Population Survey. One in 50 Americans lives with a form of paralysis. This campaign showcases 35 of the 1,275,000 people who are. Any donations will be used toward the foundation's goals of care, including grants, information and advocacy, and cure of paralysis.
11.05.2009
Congratulations to the New York Yankees on their World Series win
Congrats to the Yankees for their win in the World Series in their new stadium.
Sorry, Phanatic - not this year, buddy.
[image description: The Phillies' mascot, the Phanatic, a giant green bird wearing a red cap and a Phillies shirt, stands behind the World Series trophy last year.]
Vancouver Adapted Music Society's recording studio
A video about the Vancouver Adapted Music Society's free to use recording studio, along with other resources.
11.04.2009
The effect of cutbacks: Terri's testimony before NY Senate Finance Committee
Terri has posted about her testimony Monday in front of the NY Senate Finance Committee. Here's her statement:
Thank you for the opportunity to speak to you this afternoon about our state budget.
As a the mom of a child with Down syndrome, and as a member of the board of the Flower City Down Syndrome Network in Rochester, I am upset both by Governor Paterson's Deficit Reduction Proposal and by the Republican counter-proposal to make severe cuts to Medicaid services. These cuts unfairly victimize people with disabilities.
As a homeowner I know that neglecting a leak in my roof will lead to damage to my ceilings, then to my furniture, then to my rugs, then to my other belongings, eventually damaging the house’s very foundation, and I might even lose my house. Because of this cascade of ever-worsening problems, fixing even a small leak in my roof becomes my priority. Even when my budget is tight.
I submit that the people of NY—people like my daughter--respond to neglect much the way my house does to a hole in its roof. I believe that the proposed cuts to the OMRDD and Medicaid, and the cascade of damage that will follow for New York, and for New Yorkers and for my little girl, should not be allowed to happen.
The OMRDD provides funding for services for people with Developmental Disabilities including those with Down syndrome. This funding brings in Federal matching money which I know our state can't afford to lose. .
Agencies which rely on both OMRDD funding and Federal matching funds may well find that grants they receive from other sources are jeopardized by these cuts as well. Some of these agencies may be forced to close their doors, most will have to cut services and staff. Where does that leave our kids?
Increased unemployment--both of caregivers and of people with Down syndrome and other disabilities--is another problem our state simply cannot afford.
Unmet care needs and fewer caregivers will lead to deteriorating health and increased burdens on the state’s life-care and healthcare systems. We can’t afford this either.
People with Down syndrome and other Developmental Disabilities really have no private options for meeting their needs. They contend with a dismal unemployment rate. And the pre-existing condition of their disability necessitates Medicaid eligibility. Consequently, very few have more than $2000 to their names, making it virtually impossible for them to afford anything else.
These proposed cuts unfairly and unnecessarily victimize people who already live in poverty. This is wrong for my daughter—it’s wrong for anyone’s child.
As our legislators you must find ways to re-structure necessary budget-cutting without laying the burden on people who have Developmental Disabilities like Down syndrome--who have nowhere else to turn.
Thank you.
Thank you for the opportunity to speak to you this afternoon about our state budget.
As a the mom of a child with Down syndrome, and as a member of the board of the Flower City Down Syndrome Network in Rochester, I am upset both by Governor Paterson's Deficit Reduction Proposal and by the Republican counter-proposal to make severe cuts to Medicaid services. These cuts unfairly victimize people with disabilities.
As a homeowner I know that neglecting a leak in my roof will lead to damage to my ceilings, then to my furniture, then to my rugs, then to my other belongings, eventually damaging the house’s very foundation, and I might even lose my house. Because of this cascade of ever-worsening problems, fixing even a small leak in my roof becomes my priority. Even when my budget is tight.
I submit that the people of NY—people like my daughter--respond to neglect much the way my house does to a hole in its roof. I believe that the proposed cuts to the OMRDD and Medicaid, and the cascade of damage that will follow for New York, and for New Yorkers and for my little girl, should not be allowed to happen.
The OMRDD provides funding for services for people with Developmental Disabilities including those with Down syndrome. This funding brings in Federal matching money which I know our state can't afford to lose. .
Agencies which rely on both OMRDD funding and Federal matching funds may well find that grants they receive from other sources are jeopardized by these cuts as well. Some of these agencies may be forced to close their doors, most will have to cut services and staff. Where does that leave our kids?
Increased unemployment--both of caregivers and of people with Down syndrome and other disabilities--is another problem our state simply cannot afford.
Unmet care needs and fewer caregivers will lead to deteriorating health and increased burdens on the state’s life-care and healthcare systems. We can’t afford this either.
People with Down syndrome and other Developmental Disabilities really have no private options for meeting their needs. They contend with a dismal unemployment rate. And the pre-existing condition of their disability necessitates Medicaid eligibility. Consequently, very few have more than $2000 to their names, making it virtually impossible for them to afford anything else.
These proposed cuts unfairly and unnecessarily victimize people who already live in poverty. This is wrong for my daughter—it’s wrong for anyone’s child.
As our legislators you must find ways to re-structure necessary budget-cutting without laying the burden on people who have Developmental Disabilities like Down syndrome--who have nowhere else to turn.
Thank you.
The unenlightened attitude of higher education
Lest you still harbor the illusion that colleges and universities in the U.S. provide a place where students with disabilities will find the greatest minds working toward inclusion, here's a story for you.
Joshua Jackson, a quadriplegic student at East Central University, has been notified that he cannot remain in the dorms after the fall semester unless he provides an aide or a lift for himself since he can't transfer by himself from his wheelchair to his bed. The institution of higher learning is calling this a safety violation, although Jackson notes his concern with the university's policy that elevators are turned off in the event of an emergency.
Here's Jackson's dilemma: money. The cost of providing an aide, he estimates, would be $11,000. Lifts are also expensive and many cannot use them without assistance.
So, in effect, Jackson is being evicted from his dorm, which could end his education.
The university, apparently, has not made any attempt to find a volunteer student to assist or offer any other solution, simply relying on a liability argument.
Joshua Jackson, a quadriplegic student at East Central University, has been notified that he cannot remain in the dorms after the fall semester unless he provides an aide or a lift for himself since he can't transfer by himself from his wheelchair to his bed. The institution of higher learning is calling this a safety violation, although Jackson notes his concern with the university's policy that elevators are turned off in the event of an emergency.
Here's Jackson's dilemma: money. The cost of providing an aide, he estimates, would be $11,000. Lifts are also expensive and many cannot use them without assistance.
So, in effect, Jackson is being evicted from his dorm, which could end his education.
The university, apparently, has not made any attempt to find a volunteer student to assist or offer any other solution, simply relying on a liability argument.
11.02.2009
UK father fighting for son's life as court decides whether to extend withdrawal of life support parameters
A British court will decide the fate of a one year old boy whose father is fighting the hospital's decision to withdraw life support. According to the Guardian, Baby RB "was born with congenital myasthenic syndrome (CMS), a muscle condition that severely limits movement and the ability to breathe independently. He has been in hospital since birth." The article states:
In the UK an estimated 300 people have got CMS, with varying degrees of severity. Symptoms include muscle weakness, especially in the face; people are unable to smile and suffer from double vision and drooping eyelids.
This is the first case involving a court going against a parent's wishes on the issue of withdrawal of life support from a baby who does not have brain damage. In March, Baby O.T. died after a high court ruled he should be removed from life support against the wishes of his parents. Baby O.T. had a a rare metabolic disorder, brain damage and respiratory failure. Polls and surveys taken indicate the majority of people in Britain feel that this decision should be left up to the parent.
The boy's father will submit a video of Baby RB playing with toys and engaging with his parents to the court. The father's lawyers "argue that the baby's brain is unaffected by the condition and that he can see, hear and feel and recognise his parent".
A new medical evaluation is now being done to assess whether a tracheotomy would allow the child to be taken off a ventilator and sent home.
This tragic case is yet another reminder how little value is given to the lives of those with disabilities. Instead of improving at home care so the issue of whether the child needs a ventilator isn't confused with a quality of life assessment, society continues to tolerate dangerous encroachments on the dignity and rights of people with disabilities.
Update: In this CNN article, it is noted that there are different types of CMS and a lawyer on the case indicated the type has not been identified. It also states:
The Mayo Clinic, one of the leading hospitals in the United States, says on its Web site that "different forms of CMS vary widely in their symptoms, from mild to severely disabling. With accurate diagnosis and appropriate therapy, even potentially fatal forms can usually be treated successfully."
In the UK an estimated 300 people have got CMS, with varying degrees of severity. Symptoms include muscle weakness, especially in the face; people are unable to smile and suffer from double vision and drooping eyelids.
This is the first case involving a court going against a parent's wishes on the issue of withdrawal of life support from a baby who does not have brain damage. In March, Baby O.T. died after a high court ruled he should be removed from life support against the wishes of his parents. Baby O.T. had a a rare metabolic disorder, brain damage and respiratory failure. Polls and surveys taken indicate the majority of people in Britain feel that this decision should be left up to the parent.
The boy's father will submit a video of Baby RB playing with toys and engaging with his parents to the court. The father's lawyers "argue that the baby's brain is unaffected by the condition and that he can see, hear and feel and recognise his parent".
A new medical evaluation is now being done to assess whether a tracheotomy would allow the child to be taken off a ventilator and sent home.
This tragic case is yet another reminder how little value is given to the lives of those with disabilities. Instead of improving at home care so the issue of whether the child needs a ventilator isn't confused with a quality of life assessment, society continues to tolerate dangerous encroachments on the dignity and rights of people with disabilities.
Update: In this CNN article, it is noted that there are different types of CMS and a lawyer on the case indicated the type has not been identified. It also states:
The Mayo Clinic, one of the leading hospitals in the United States, says on its Web site that "different forms of CMS vary widely in their symptoms, from mild to severely disabling. With accurate diagnosis and appropriate therapy, even potentially fatal forms can usually be treated successfully."
NYC Marathon winners and Team Reeve
Edith Hunkeler of Switzerland and Kurt Fearnley of Australia won the NYC Marathon wheelchair division. They are pictured at left, wearing orange jackets and wreaths in their hair, and holding bouquets after the race. Hunkeler dubbed this marathon the toughest and said it is "always the highlight of my year".Team Reeve pursued its goal of raising $26,000 to help cure paralysis at the NYC marathon. Matthew Reeve, Christopher Reeve's son, (pictured at right in his Team Reeve shirt while running) finished the race in a bit over four hours. Matthew has raised $18, 672.00, according to his fundraising page, which, if you'd like to donate, can be found here.
A video about the team's goals of Care and Cure is shown below.
11.01.2009
Thanks, Governor Corzine: Cash Model In home care coming to fruition
I've blogged before about the autism legislation that Governor Corzine has signed in this state, all of which is important in providing access to care for families with children with autism.
But there is legislation closer to home that is about to be signed, the Ruiz/Vitale bill. The personal care assistant program (PASP), a state program in NJ which provides in home care to those living with a disability by providing help through agencies who send aides, is now offering the option of a Cash Model, providing even more flexibility. Instead of being limited to hiring an aide through a traditional home health care agency, the consumer can now, among other things, use the funds to hire other people - perhaps neighbors or friends. This empowers the person with a disability, allowing him or her to manage the details of the care received. Trust me, there isn't a more important determinant of quality of life than this when you have a disability. The legislation for this is on Governor Corzine's desk, after a time period of trying the program out in different counties. I'm extremely grateful that I'll soon be able to use it.
This change will make an enormous difference. It will empower those of us who need at home care to manage our own funds and hire people in our community who are right at hand, such as neighbors and friends, to manage our daily tasks. For someone like myself, who lives alone, it will mean that I will have the ability to go outside an agency to make flexible arrangements with people that won't require I wait two or three days for a backup or -worse yet-go without help. Due to the shortage of home health care aides, this can - and does - happen. I'm extremely grateful that people have listened to these concerns.
I appreciate the years of work that implementing this change has taken. First, the Cash Model was tried in various counties and tweaked. Thanks go to the many offices for disability services in the state and the pioneers who tried it. I'm also grateful to the governor and his staff for listening to the needs of the disability community and the legislators who have pushed for the legislation.
Without this program, many of us could not work or live in the community. It is my fervent wish that more states look to models like PASP and its Cash Model to empower people with disabilities in their communities. In the meantime, I will continue to push for those changes and remain grateful for the hard work of everyone involved.
But there is legislation closer to home that is about to be signed, the Ruiz/Vitale bill. The personal care assistant program (PASP), a state program in NJ which provides in home care to those living with a disability by providing help through agencies who send aides, is now offering the option of a Cash Model, providing even more flexibility. Instead of being limited to hiring an aide through a traditional home health care agency, the consumer can now, among other things, use the funds to hire other people - perhaps neighbors or friends. This empowers the person with a disability, allowing him or her to manage the details of the care received. Trust me, there isn't a more important determinant of quality of life than this when you have a disability. The legislation for this is on Governor Corzine's desk, after a time period of trying the program out in different counties. I'm extremely grateful that I'll soon be able to use it.
This change will make an enormous difference. It will empower those of us who need at home care to manage our own funds and hire people in our community who are right at hand, such as neighbors and friends, to manage our daily tasks. For someone like myself, who lives alone, it will mean that I will have the ability to go outside an agency to make flexible arrangements with people that won't require I wait two or three days for a backup or -worse yet-go without help. Due to the shortage of home health care aides, this can - and does - happen. I'm extremely grateful that people have listened to these concerns.
I appreciate the years of work that implementing this change has taken. First, the Cash Model was tried in various counties and tweaked. Thanks go to the many offices for disability services in the state and the pioneers who tried it. I'm also grateful to the governor and his staff for listening to the needs of the disability community and the legislators who have pushed for the legislation.
Without this program, many of us could not work or live in the community. It is my fervent wish that more states look to models like PASP and its Cash Model to empower people with disabilities in their communities. In the meantime, I will continue to push for those changes and remain grateful for the hard work of everyone involved.
A Prayer to St. Anthony
Whenever I lost anything as a child, my grandmother would tell me not to worry, just to pray to St. Anthony, the patron saint of lost things, and it would be found. I'd often return to her a half hour later, holding up whatever I lost and she'd say "See? St. Anthony always comes through."
As I grew older, I went to her with other problems. She would still tell me to pray to St. Anthony. I would make a face, caught in the adolescent mire that convinced me my problems were beyond repair.
One day after I rolled my eyes at her, my grandmother said to me, her blue eyes tearing up "St. Anthony isn't just for finding lost things. He also deals with lost souls."
"Lost souls?"
She nodded. "And if he can handle that, I think he can handle just about anything."
There wasn't much I could say to that, so I shut up, stopped rolling my eyes and gave St. Anthony another try, even though my problem du jour seemed insurmountable. It wasn't solved in a half hour or even a day, but I found that prayer and time did heal it. I began to grow up and learn that healing something doesn't always mean that what we're fixated on gets better. Often, we heal when we accept things and move on.
I suppose on this All Saints Day, a prayer to St. Anthony is in order. It's not just for the lost things in my life, but to help me keep my perspective when I face unanswered questions or when I struggle to find words to comfort a friend whose parent just died, as I had to do this week.
St. Anthony can find anything. Most importantly, for anyone who feels despair, he can even help us find our faith when we think it's lost.
As I grew older, I went to her with other problems. She would still tell me to pray to St. Anthony. I would make a face, caught in the adolescent mire that convinced me my problems were beyond repair.
One day after I rolled my eyes at her, my grandmother said to me, her blue eyes tearing up "St. Anthony isn't just for finding lost things. He also deals with lost souls."
"Lost souls?"
She nodded. "And if he can handle that, I think he can handle just about anything."
There wasn't much I could say to that, so I shut up, stopped rolling my eyes and gave St. Anthony another try, even though my problem du jour seemed insurmountable. It wasn't solved in a half hour or even a day, but I found that prayer and time did heal it. I began to grow up and learn that healing something doesn't always mean that what we're fixated on gets better. Often, we heal when we accept things and move on.
I suppose on this All Saints Day, a prayer to St. Anthony is in order. It's not just for the lost things in my life, but to help me keep my perspective when I face unanswered questions or when I struggle to find words to comfort a friend whose parent just died, as I had to do this week.
St. Anthony can find anything. Most importantly, for anyone who feels despair, he can even help us find our faith when we think it's lost.
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