This year has been a series of lessons in faith for me. I've grappled with both giving - and receiving. In many ways, it's much easier for me, like many, to be the giver rather than the recipient and certainly much easier to be seen as a giver than someone who receives. Those who give are seen as heroes, as rescuers.
But there exists for some a grace about giving - and receiving - that can remind us that many of the miracles of love that happen here on earth can only be realized when we are open to both giving and receiving. It is often our limited human vision - and ego- that prevents us from seeing the worth of the whole, the joy of being a part of what is taking place, no matter whether we give or receive.
I hope this selection from Jars of Clay, some of which I've paraphrased because the clip is only 30 seconds, has meaning for you in some way. I wish everyone a Happy New Year
If you'd like to watch a livestream of Times Square 2010 Happy New Year's Eve, go here.
Since I'm cable-challenged due to budgetary considerations, I'm still looking for a way to use my TV set without a monthly fee - and I believe I have a lot of company.
Over the holiday weekend, I ran into a new program called Zinc (which can be downloaded here). Like Boxee, it aggregates various sources of TV shows and news, among other things and allows the viewer to watch videos and even add favorites of their own (like local weather) to it.
Zinc ran well and has a very colorful appearance. There were no crashes on my laptop-with-specs-fron-a-few-years-ago, nor did I run into annoying little delays with a swirling ball. As a result, it really did feel as if I was watching TV once I chose my program or movie. By the way, Zinc allows Netflix users with a subscription to view movies. It has a nice interface for that. It also includes Hulu, as well as ABC, NBC, Fox, WB, and many more.
And did I say it's free?
This video will give you an idea of what Zinc is like.
There's apparently also a box to allow viewing in multiple rooms. Or you can just watch on your computer or hook your computer up to your TV set, like I do.
The Virtual Abbey offers insights and resources for living as a modern monastic in the Benedictine tradition.
The greeting from the Abbess states:
We're a community of modern-day monastics united by our practice of praying the Daily Office online. We are young and old, male and female, laity and ordained. We live and work in different places around the world.
We do not belong to one single Christian denomination; more than a few of us are practicing members of more than one faith tradition; some are active in the emergent church movement. You could say that we're ecumenical in the extreme. All are truly welcome to pray with us.
No worries about access at the Virtual Abbey. So come join us in prayer on Twitter @Virtual_Abbey, check out the Facebook page or the blog. We look forward to meeting you.
Mark Baker, a quadriplegic who was shot last year, wanted to go home, but he and his family couldn't afford the equipment he needed to make that happen, nor does our system provide for that kind of assistance- even though being cared for at home is much less expensive. TV viewers stepped up to help him get home in time for Christmas.
As we grow in our faith, we learn that praying isn't like a Christmas list where we tell God what we want or demand a certain result by a certain deadline. But when times are tough, as it's been for some of the folks who read this blog, it's pretty difficult not to have solutions in mind when you pray or to remember that it's about God's will and not our own.
Yet the truth is, if you prayed and suddenly an angel appeared out of nowhere offering to solve all your problems, you'd find that pretty unsettling.
This has been a tough year for some folks. Some face health issues or financial problems. Others may feel as if their faith is being tested. It's important to remember that the swelling music that heralds the arrival of instant help is just a Hollywood trick and that if you don't hear it, it doesn't mean you're not a "good man" (or woman). It doesn't mean that all is lost or that your prayer hasn't been heard. It also doesn't mean that you "prayed the wrong way" or you don't have enough faith.
Christmas is a time when we are reminded how much God loves us, yet we forget that and often place expectations upon ourselves and others that are impossible to meet. Those lists we make of things to do, things to buy, people to write cards to or call or visit can and do distract us from the real meaning of Christmas. Celebrating Christmas can and does include being in prayer with God as we mark this holiest of times. No matter what your circumstances, you can celebrate Christmas, knowing that its most precious gift is the gift of love, freely given to all of us equally.
"Are you willing to believe that love is the strongest thing in the world - stronger than hate, stronger than evil, stronger than death - and that the blessed life which began in Bethlehem nineteen hundred years ago is the image and brightness of the Eternal Love? Then you can keep Christmas." -- Henry Van Dyke
There's always so much going on around the blogosphere, that even though I receive emails, twitter messages and subscribe to lots of blogs, I miss some of them. So I thought I'd put up a few of the posts I've seen instead of just sharing them on my sidebar as usual. I read disability blogs (of course), faith blogs, film blogs, and anything else that strikes my fancy, so strap yourself in for a ride. Maybe you'll find a new blog you like.
Kenny over at The Traveling Wheelchair, who does accessibility reviews, has posted up a video about his transition from institutional to community living.
You can find his post about this video, including a narrative, over at his blog.
Dave is hosting a holiday tea - with cheese (wish I was there!)
Over at Disability Studies, Temple U, Penny Richards blogs about Virginia McKinney, a figure from disability history, who founded and ran the Center for Communicative Development in Koreatown. You might want to check out this blog for information on the Disability blog carnival as well and other important announcements.
Peter over at the Digital Awakening writes about a road trip and the fine food he had. Ever been traveling, need an accessible room because you have a disability and hesitate? Well you may not after you see what Katja's blog has to say about how an AB uses accessible rooms.
And over at More Meredith Gould, the Magi meet the Cardinals. Not the baseball team. Well, here's the picture. (The birds! The birds!)
That's it for now. The management reserves the right to update. The management also points out that these fine bloggers have many other fine posts on almost a daily basis and wishes to thank them for all their blogging which keeps this blogger blogging. The management invites you, the reader, to add your own links, blog name, favorite blog links, etc . in the comments. If you have a new blog, you're especially encouraged to speak up, since that's a great way to get on blogrolls.
Over the years, I've generally grown to dislike large snowstorms and blizzards because it's meant a disruption in visits from aides for personal care. That means I go without assistance for things such as - eating. Being hungry is no fun, no matter how pretty the snow might look. I start fantasizing about putting some syrup on it and making a snow cone. Snow mounds look like marshmallows. S'mores! Mmmm.
Luckily, Meredith has always been great about coming over when it snows and I'm very grateful to her for that. Having lived in Rochester, NY, she considers most of the snowfalls around here too small to even count. "This is snow?" she scoffs, shaking something white off her shoes and throwing open the front door. "People around here don't know what snow is!"
However, yesterday, although Meredith was willing to come over after the blizzard (which she was still saying was "just some white stuff"), I was plowed in. There was nowhere for her to put her car. The landscapers who dig us out came around 9pm . I greeted the guys with the snow blowers and shovels with "Hey, can you open this for me?" and handed them a few pieces of wrapped cheese to unwrap so I could eat something. They offered to take the smelly garbage out too.
More importantly, they plowed - which is great. I could eat a- snowdrift.
Introducing a new site called Christians with Disabilities for people with disabilities and those who love and care for them.
via its site:
Friendship, Encouragement, Compassion, Comfort, Understanding, Joy ~ That's what you'll find here. We can never replace relationships with Christians who understand our journey. Everyone will have different experiences and God will use every single one of those experiences to connect us all together.
The site includes groups, a member spotlight, events, blog posts, photos, videos, poems and other writings, video chat, daily devotions - and more.
One thing we don't talk about this time of year is that the holidays are very difficult for some people. For those dealing with mental health issues, the loss of a loved one, illness, financial or other issues, these stressors can lead to increased depression and even the risk of suicide.
The organization No Stigmas (on Twitter at @NoStigmas and on the web here) is a grassroots effort working to raise awareness and erase the stigmas of suicide and mental illness. This is done in part by sharing stories of hope.
Its site says:
NoStigmas™ is collecting survivor stories to inspire hope & erase stigmas; we want to hear yours! If your life has been touched by suicide and/or mental illness and your story needs to be heard, please share@nostigmas.com to learn more about this project.
The site also offers the following information for those in need of help. I urge you to visit it and support their good work. Chat online with other survivors at SuicideGrief.com. If you need to talk to someone now, please call 1-800-273-TALK(8255) or visit the Lifeline for crisis services in the USA. Contact your healthcare professional or dial 911 in case of emergency.
via YouTube: Watch these kids exploring their abilities on Wendell Foster's wheelchair-accessible playground and park! Located in Owensboro KY, this Sensory Park and Playground is open to the public and invites children and families of all levels of ability to enjoy without boundaries.
via YouTube: Computer Science doctoral candidate Katherine Tsui demonstrates "Halo", a prototype robotic arm that she has designed at the UMass Lowell Robotics Lab to help people with physical disabilities reach for objects on a table or shelf. Halo uses tiny webcams mounted over the arm and on the gripper to display the desired object on a flat screen monitor. The operator simply touches the screen to select the object, and the arm then autonomously retrieves the object and brings it to the operator. The project is funded through a research grant awarded to Prof. Holly Yanco from the National Science Foundation (NSF).
WASHINGTON—The National Council on Disability (NCD) will conduct its next quarterly meeting at the JW Marriott Houston, 5150 Westheimer, Houston, TX, beginning at 8:30 a.m. on Tuesday, January 19, 2010, and ending at 11:00 a.m. on Thursday, January 21, 2010. This meeting is open to the public.
NCD believes it is vital to hear from communities around the country on what works and what does not for people with disabilities. This meeting will provide another opportunity for that exchange. The agenda will include, among other things, presentations by the Honorable Kathleen Martinez, Assistant Secretary of Labor for Disability Employment Policy, and Lex Frieden, Professor of Health Informatics and Professor of Rehabilitation, University of Texas at Houston; presentations on emergency preparedness and youth with disabilities in transition; and two releases of NCD research projects: Workforce Infrastructure in Support of People with Disabilities and The State of Housing in America in the 21st Century: A Disability Perspective.
A specific time is also designated to receive public comment, supported by a toll-free call-in line, and input is encouraged and greatly appreciated. Individuals or organizations can also provide written comments by e-mail, fax, or mail. A public comment session will be held Wednesday, January 20, from 11:30 a.m. until Noon, CST. The toll-free call-in number is (888) 790-6568, and the pass code is “NCD Meeting.” Written comments on disability-related issues of concern or interest can also be emailed to mquigley@ncd.gov at any time.
A reception will be held at the hotel for meeting participants, audience members, and stakeholders from the disability community on Wednesday, January 20 from noon until 1:30 p.m. Additional details about the meeting will be posted on the NCD Web site as soon as they become available. You will also find the meeting agenda posted there approximately 10 days before the meeting is scheduled, and written comments for Council consideration can be submitted at any time by writing to ncd@ncd.gov.
The purpose of NCD, an independent federal agency, is to promote programs, practices, policies and procedures that ensure full inclusion of people with disabilities into all aspects of society. NCD accomplishes this mission by providing advice and making recommendations to the President, Congress, governmental agencies, and other stakeholders.
For more information, please contact NCD’s Director of External Affairs, Mark S. Quigley, at mquigley@ncd.gov or by telephone at 202-272-2004.
I was one of the fans hoping to see Cliff Lee play in Philadelphia at least another year. Unfortunately, it looks like his trade deal is a done deal. My Phillies fan deep throat connection tells me either Lee or his agent decided the Phillies couldn't pay him what he wanted after next year, so they traded to get good prospects rather than lose everything if Lee walked. OTOH Halliday wants to be in Philly and he suppposedly signed a four year extension at less than "sabathia money" and some say he is a better pitcher than Lee, although we would have been unbeatable with both in the lineup. My Phillies fan connection is also not happy about giving up Drabek and Taylor, but can't wait to hear the final names of the prospects.
The Lady Vols women's basketball team is now 8-0, playing Louisville tonight at home, and have moved up to number 3 in the rankings. They just beat Rutgers in Madison Square Garden Sunday night, a game I would have loved to get to, but the logistics of going was too expensive.
Meanwhile, Lady Vol Amber Gray, pictured below, is still rehabbing from a brain aneurysm. Amber has spent the fall semester cheering from the bench for the team during games and working hard on her physical rehab during practice and is preparing to start classes in January. She won't travel with the team during the week so she can concentrate on her classes. But Amber knows she can make a positive contribution.
"I'm viewing the game a lot differently because I'm not anxious to get in there because I know I'm not going to play," said Gray. "I'm able to help, especially the freshmen, on doing the things that they need to do and get done."
Gray is expected to play basketball in the future, but nothing is guaranteed.
"That is the goal at this point in time," said Moshak. "I think it's too early to completely predict that. We're working towards that. That's what's motivating her. We're definitely not taking it off the table, but there are no guarantees at this point either."
via tricitiessports.com
And that's true in sports- no guarantees. But it's great to see this young lady's work ethic and I bet she'll continue to make positive contributions in the future.
via the SDS list serv: Below I've embedded the film Shameless: The Art of Disability and its description from NFB.ca
Art and activism are the starting point for a funny and intimate portrait of five surprising individuals with diverse disabilities. Packed with humour and raw energy, this film follows the gang of five from B.C. to Nova Scotia as they create and present their own images of their disabilities
There are questions I've heard so often about my disability that Meredith once put together a FAQ list for me to hand out. But not every question made that list.
One of the other questions I've been asked is "What's it like to be a quadriplegic?" usually followed by "I can't imagine!"
My answer to that is no, you probably can't imagine, although you may try , with the misguided help of maudlin movies about disability, on the one hand, or inspirational tales of people climbing mountains, on the other. You'll read stories about quads who want to die and stories about quads who help others find better ways to live. You may tap into societal myths and assumptions about disability, through no fault of your own because we are surrounded by them. You may base your ideas on the few disabled people you've met and generalize from there how it is to live with a disability. And, sadly, you may avoid being around disabled people because you are so worried that you'll say or do the wrong thing as you try to imagine what it's like for them.
To all that I say - please, don't imagine what it's like. You're bound to go wrong with that approach. Living with a disability is a personal experience, shaped in part by economic, class, race, gender and other issues. It is also based on personal response. Some people adapt, others do not and there's a whole range in between.
This is not to say we should judge anyone's personal response to living with a disability. We don't go around condemning nondisabled people for how they respond to life, so why should we judge disabled people for how they respond to living with a disability or, for that matter, for getting things done differently?
But we do as a society. And the doing things differently part is still a huge issue when it comes to many of the assumptions, that begin with the unfortunate word itself - dis-abled. Nothing could be further from the truth of my experience. In fact, I've accomplished more since I acquired my disability than before.
For example, I do some things differently at work, but the way I do things at times (and this is a little known fact) is better than the way I used to do them when I was nondisabled. I take more copious notes, for example. One colleague was amazed to discover the level of detail that my method of taking notes provided one day when we needed to find information out quickly. In minutes, I went through hundreds of pages of documents in a way I never would have discovered if I didn't use assistive technology.
The point is, it's wrong to assume that living with quadriplegia (or any disability), is a disadvantage in every way. It's wrong to think of it as black and white. It's wrong to assume that doing things differently results in an inferior product.
We must get rid of the Sunday night TV movie mindset too, which has for years trapped disabled characters in a story arc that resembles a comic book superhero. Adjusting to living with a disability is not exciting enough, I suppose, to show on the big screen, so Hollywood has to embellish. The truth is that, just like nondisabled people, I have good and bad days. I also get tired, get the flu, get good news, see friends, and experience everything nondisabled people do. The everyday mundane details of my life, which I don't blog about because it would bore you to tears, would never sell a book. Do you care what kind of coffee I drink? Does it matter to you that my cat woke me up at 4 am by banging a door repeatedly because he was out of food? Probably not.
It is only in getting to know and being around someone who is living with a disability that the "I can't imagine" approach gets fixed - or cured- as some of my friends would say. When you see a disabled person in a cubicle next to you or speak with her over coffee and they become a neighbor, a friend, a colleague or a committee member, then you don't have to imagine what it's like.
That's the day I dream about. Imagine when no one has to imagine because we are living shoulder to shoulder.
Ridiculous and Sublime: Life in an Inner-City Franciscan Monastery is a feature-length still-image film that explores the lives of the Little Brothers of Saint Francis, a small Catholic monastery in Boston's Mission Hill neighborhood. The film is being created as an artful integration of black and white photographs, and audio recordings of interviews, chanting, prayer, and daily life in the monastery.
I'm always amazed when people assume that those of us with disabilities would prefer the process of hiring help and arranging for that help, including scheduling and training, rather than do something ourselves. Believe me, it's more work and more time consuming to bring in "help" than to do things myself.
via YouTube: A muscular dystrophy patient finds joy with wheelchair dancing at Sharp Grossmont Hospital- while other participants talk about their disabilities and dancing.
Scholarships available from CELA 2010 to travel to Wash DC and tell your story regarding access to and reimbursement for complex rehab products now and in future.
via their site: What is CELA?
Continuing Education and Legislative Advocacy Conference that brings together Consumers, Manufacturers, Rehab Professionals, and Suppliers for face-to-face visits in Washington, DC with Members of Congress to help address the current challenges of access to, and reimbursement for, Complex Rehab products now and yet to come.
What is required of you?
By accepting a scholarship to CELA 2010 you are agreeing to travel to the Washington, DC area, tell your story and participate in the following CELA 2010 sessions:
- Capitol Hill Visit Orientation - Wednesday April 28th 3:30 - 6:00 pm - Capitol Hill Visits, Thursday April 29, 2010, 8:30 am-4:30 pm (transportation provided if necessar - Capitol Hill Debriefing, Wine and Cheese Reception, Thursday April 29, 2010 5:30-7:30 pm
What you need to do.
- If participating in this conference interests you, please continue with the application process below. - There are a limited number of scholarships available to cover your travel costs, lodging and meals. - If you have questions or desire additional information please call (800) 976-7787. - Applications will be processed and reviewed on a first-come first-served basis. - Final application submission deadline is January 8, 2010. Those awarded scholarships will be notified on or before February 8, 2010.
[image description: In a box, the words CELA 2010 April 28-30, 2010 with an image of sponsor logos to the right and below spelled out Continuing Education and Legislative Advocacy Conference.]
Just heard about the Mind Flex game which is a big hit this holiday. It's pricey, but not nearly as expensive (as we all know) as assistive technology.
via YouTube: Daniel Sieberg spoke with Mattel's Jim Sheridan about their new mind control toy, Mind Flex. The game uses brain waves to power a fan that floats a ball through an obstacle course.
Then there's the Star Wars Force Trainer, which also uses "cutting edge brainwave technology", according to the description:
Consider it practice for all the brainwave products about to come out in assistive technology- that none of us will be able to afford :)
One of the stories is about a youngster with a disability whose car lift has broken. The old lift would cost $1000 to fix, but insurors denied a claim to get him equipment he needs for $1600. This 7th grader's father lost his job three months ago, so his mother has to "put {him} into the car seat, and that turns into a stroller" and she says"he feels like a little baby when we go places."
This story doesn't surprise me. I hear from families with children with disabilities and my nephew also has a disability that requires equipment. Claims are denied and families scramble to keep the child involved in the community, using whatever they can afford. As a child grows into adolescence, he/she may find himself/herself in the same situation as the Orlando youngster- using equipment designed for babies and toddlers even when it's not medically necessary. (There's an important distinction there- I'm not blaming parents for using suitable equipment for safety or medical reasons. ) It can happen to adults too.
This is about insurance denials and the failure of our system to make equipment readily available to children or people with disabilities at affordable prices. What gets lost in the shuffle is this: these children (and adults), because they are being denied access to medical equipment that would maximize their independence, lose a great deal. They can lose self esteem as well as opportunities to do things independently, ranging from a job to getting an education to attending social events with peers.
Placing a monetary value on any of that is difficult. We need to have more of a dialogue about why this equipment has a priceless value, why a six hundred dollar difference denied means a 7th grader has to pushed around in a stroller-like device when it's not necessary.
If it was your child - or your nephew - you'd care. I do. And I can tell you this- you'd cry over it too. Because I have.
Again, our true character is proven when no one is looking. It’s easy to accept disability when someone is telling you that you’re an inspiration. Yet, it’s a far more honest reality – dare I say, brutal reality – when it’s just you, in your kitchen, struggling with all your might for twenty minutes to open a beverage. How do you feel in those circumstances? Are you heroic for yourself, or do you become quickly discouraged and defeated, crumbling into a ball of self-pity?
If you’re playing your disability A-game, you should feel more energized and inspired when facing private struggles than if you were on television with millions of people applauding you for your inspiration. See, when you have the tenacity and dedication to tackle a personal challenge with all of your might when no one’s applauding – because you only want the self-satisfaction of giving life your all – that’s the character that true heroes and champions possess.
It's past midnight here in the U.S. and I wanted to write a post that would be up in the morning today, December 3, 2009 because it's an important day. It's a day that's set aside by the UN to bring attention to issues facing those living with disabilities, to celebrate progress and achievements and to mark the work that still needs to be done.
I found this article out of Sri Lanka, which is entitled 'Today is a good day to stand before the mirror'. It speaks about the ways in which all of us have feet of clay, are utterly incapable of understanding, have short memory spans, are hard of hearing and are unable to see things. And it ends with:
Today is International Day of Disabled Persons. An appropriate day I believe to self-indulge in a different way, to reflect on our disabilities, revisit the choices we’ve made, cast our gaze at that which our eyes avoided, listen to things we don’t really like to hear, speak the inconvenient truths that might cost us something, walk in directions we’ve dared not walk, raise our hands to the right thing and not that which is profitable. Appropriate too, to employ our minds to understand who we really are as an ungainly composite of ability and disability.
The theme for this year is "Realigning the Millennium Development Goals for All: Empowerment of Persons with Disabilities and their Communities Around the World,’’ stresses the need to develop programs that raise the profile of disability issues in both the developed and developing world and identify existing needs and priorities, and calls for greater efforts to find solutions which are suited to the technological and economic conditions of the disabled. These actions require people with disabilities to be visible and to be given a voice that will qualify them to be adequately represented in decision making."
From Malaysia, the writer speaks about acquiring his disability and being a father of a son with Down Syndrome and Malaysia's new law the Persons with Disabilities Act 2007, noting that disability is color coded there.
"For the disabled, they have to produce their respective 'Orang Kurang Upaya' OKU identity cards for verification if they wish to obtain assistance from the JKM as well as the other government and private agencies.
This card can be obtained upon registration with the respective district JKM office. The OKU identity card issued by the JKM helps the disabled to deal with the respective authorities.
The respective cards bear six different colour codes where blue denotes the vision disability, purple (hearing), green (physical), red (cerebral palsy), yellow (learning disability) and orange (other disabilities)."
In New Zealand, those who care for people with disabilities are being praised by the Minister of Disability Issues. "My personal connection with disability comes through my brother who was tetraplegic. I remember the experiences so vividly and wished that he could enjoy the pleasures of life, to be able to participate in the way he determined, and to feel that nothing was beyond him.
"I am passionate about the right of families to care for family members in their own homes, with flexible support that allows them to have greater choice and control of their lives. "And this is an area that I will be focussing on as the Minister of Disability Issues."
There is much, much more going on today around the world to mark this important event. Here are some facts from the World Health Organization:
At least 10% of the world's population, or 650 million people, live with a disability (1).
20% of the worlds poor are disabled (2).
The percentage of children with disabilities not attending school is extremely variable and is between 65 - 85% in some African countries (3).
Mortality for children with disabilities may be as high as 80% in countries where under-five mortality as a whole has decreased to below 20% (4).
In many low-income and middle -income countries, only 5-15% of disabled people who require assistive devices and technology have access to them (5).
Please join me today in celebrating the achievements of many people with disabilities as well as praying for and working toward the empowerment of those around the world who still lack basic rights and necessities, our brothers and our sisters who, like us, are a "composite of ability and disability".
Mark Horvath was homeless himself fourteen years ago, but found himself looking away from those on the street once he got back on his own feet. He decided to change that by using social media to film people he met and tell their stories via social media.
You can find Horvath on Twitter at @Hardly Normal. His web tv station can be found at InvisiblePeople.tv
The blog at seattlepi.com has a piece on this book , recommending it as a holiday read or gift. It talks about animals who have been adopted and rescued and go on to become therapy animals or service dogs.
Among these tales, which are illustrated with Diana Walker's beautiful photographs, are:
� Octogenarian and Delta Society Pet Partner Billie Peters and her rescued racing greyhound, Cordial Grace, who stop by a nursing home, a veterans' hospital, and a children's reading program weekly.
� Veterinarian and Delta Society Pet Partner Karen Lanz and her three-legged dog Marlee, who visit wounded soldiers at Walter Reed Army Hospital.
� Blind and quadriplegic inspirational speaker Maureen Pranghofer and her service dog Ally.
� Fire Captain Fred Andes and his chocolate Lab Sadie, who do arson detection work together.
