Sunday, November 30, 2008

Is it Christmas yet?

No, it's Advent.

Meredith Gould, author of The Catholic Home: Celebrations and Traditions for Holidays, Feast Days, and Every Day blogs about setting up her own home for Advent. [Personally I'm looking forward to putting out my felt Advent wreath, fire proof and quad friendly. ]

But her preparations are a bit more involved:

Advent prep began two hours before sundown tonight. Turns out I needed every minute to arrange this year's mantle diorama of the Annunciation, hang angels from door handles, and scatter stars around my hermitage. Plus vacuum.

About an hour into this festive frenzy, I lit balsam-scented candles to enhance my mood and then fortified myself with a tangerine to tear through four closets and two cabinets searching for the Advent wreath candle holder. It was in a drawer where I also found seasonally appropriate coasters, dish towels in Sarum Rite blue, and an unopened bag of 50 tea lights. All can call me blessed.

Of course this was in between being my aide and writing a new book. And if you go over to her blog which is officially one year old today, she has more to say about that, too. And about Advent....

Saturday, November 29, 2008

The Big FIVE O Disability Blog Carnival is up...

and you can find it here. That's the fiftieth (count it!) disability blog carnival. You all rock because you all made it happen - both readers and those who post.

An awesome collection of posts , put together by Emma, who makes some very interesting comments herself about blogging that are worth checking out.

Congratulations to everyone on this fiftieth , 50th, the big FIVE O carnival.


Feeding our brothers and sisters: Food & Friends

The news is full of stories about struggling families and food banks.

Different programs serve different populations. Today I'd like to feature Food & Friends, a program that helps those who are living with HIV/AIDS, cancer and other life challenging illnesses who lack the resources to buy nutritious food. This program , like so many others, impacts the entire family, assisting the children and elderly parents of those who need help during these times as well.

Friday, November 28, 2008

Tenor sings poems of Pope John Paul II

Placido Domingo has issued a new CD entitled Infinite Love, containing songs from poems of Pope John Paul II. The songs are in English , Spanish and Italian and are based on poems written by the Polish pope before he was elected in 1978. On the CD "the Spanish-born Domingo sings duets with Josh Groban, Andrea Bocelli, Vanessa Williams and Katherine Jenkins as well as with his son, Placido Domingo Jr."

Bishop Giampaolo Crepaldi, secretary of the Pontifical Council for Justice and Peace, described his experience of listening to the new album:

"Listening to these songs, so magnificently interpreted by Placido Domingo and the London Symphony Orchestra, brings back the memory of John Paul II and of an entire life, frequently marked by dramatic episodes, lived with a passion for God and for man.

“What is the secret of this 'Wojtylian' poetic, which he translated into so many poetical texts?" asked the bishop. "For John Paul II everything begins with God's 'yes' to man, everything arises from God's plan of 'infinite love.' God's 'yes' to man means 'yes' to his dignity, to his authentic needs. It means 'yes' to the world ... and to everything that is beautiful, good and just in life." via


A 34 year old Walmart employee died and four others were hurt during the early morning rush into a store today, Black Friday.

"He was bum-rushed by 200 people," Jimmy Overby, the man's 43-year-old co-worker, told the New York Daily News. "They took the doors off the hinges. He was trampled and killed in front of me. They took me down too ... I literally had to fight people off my back."

A 28-year-old pregnant woman was also taken in for observation and three other shoppers suffered minor injuries during the incident, police said. The pregnant woman and the unborn baby were reported to be OK, said Sgt. Anthony Repalone, a Nassau County police spokesman.

Wal-Mart Stores Inc. in Bentonville, Ark., closed the store in Valley Stream for several hours after the stampede. It reopened shortly after 1 p.m. via

A crowd of 2000 had gathered outside the store for the early sale.

A shot in the arm for Medicaid- states ask for federal help

As the economic problems hit families, more are in need of Medicaid and SCHIP, programs that "are on the brink of deteriorating," according to Jocelyn Guyer, the deputy executive director of Georgetown University’s Center for Children and Families.

States are asking for two things in particular.

First is reauthorization and expansion of SCHIP, the federal program that gives states money to provide health insurance for children in families that earn make too much to qualify for Medicaid. In 2007, Congress twice passed expansions of the program with significant bonuses for states to cover more kids, only to see both bills vetoed by President Bush. As a result, Congress extended the program, which must be reauthorized before it expires on March 31.

States are also asking for a temporary increase in the federal share of the joint federal-state Medicaid program, which annually costs the states and federal government $330 billion.

Congress was sent a letter from the National Governors Association in October stating that additional funds for Medicaid would permit services to continue.

We rely on each other ah ah

I'm taking a few days off over the holiday to try to get rid of this cold/flu whatever I've had for almost two months now off and on. I can't get a flu shot due to an allergy, so the winter "stuff" is hard for me to avoid.

So I'm watching Barry Manilow on the Today show, performing in the streets, singing the words we rely on each other, ah-ah.

It's Black Friday. Stores are opening their doors at 5 a.m. with heavy discounts. According to reporters, some of the early shoppers are buying coupon items, then reselling them in the parking lot to make money. Large flat screen TV's, blu ray disc players. That kind of technology - you need one to appreciate the other. If you don't buy the first one, you don't really need the other one is what my Scottish relatives would have said. But they were holdouts even buying a radio.

As life has gone on, I've been glad they taught me some of their values.

They raised nine children during the Depression. The youngest got food first. This became a family tradition, although in later generations it applied to the luxury of who got the last piece of pie.

We rely on each other ah ah.

And they used that radio to listen to FDR's fireside chats.

Wednesday, November 26, 2008

For Thanksgiving, with gratitude to my readers

Dear Sacred Heart of Jesus,

I love You so much
and I give You my heart.
Help me to love God.
Help me to love my neighbor
as a child of God.
Help me to love myself
as a child of God.


As a child I often said this prayer. Lately I've been saying it again. Along with reading Psalm 146.

It's a simple and loving prayer.

I recall the laminated picture of the Sacred Heart of Jesus that I carried in my school bag every day. When I graduated from Catholic elementary school and went to ninth grade in public school, my new best friend Roseanne was a graduate of the "other" Catholic elementary school in town. We met when my laminated picture of the sacred heart fell out of one of my books during class. Roseanne saw it and handed it to me, saying this prayer.

We both smiled.

The Sacred Heart of Jesus is a reminder of the intense love Christ has for us, a spiritual love , a tender love. And what better symbol than a heart? Those who have felt this love surely know that it's meant to be shared.

On this Thanksgiving, my heart is filled with gratitude and love. I have been so blessed in my life. I see the hand of God every day through the hands of others who offer help - cut my food (Meredith), button my coat, or even lovingly lift my tea bag before my tea steeps too much (Wheelchair Dancer). I am surrounded by the love of God through friends, many online, whose kindness has sustained me through difficult times. A comment, a word, a prayer. It matters. (Speaking of which, Wheelchair Dancer is recovering from hip surgery, so why not leave her good wishes for a swift recovery? She'll get them when she's feeling better!)

I also want to thank those readers who have helped me help others. Your comments to those struggling, your donation of equipment, and your continuing support of those in need matter. Your acts of love have made Wheelie Catholic a catholic blog, one that encompasses the hearts of many.

Thank you.

I am taking Thanksgiving off from blogging, but wish everyone a wonderful Thanksgiving.

Greyhound bus driver fails to lower lift for paraplegic passenger

Larae Ransom, a 25 year old woman with paraplegia, has filmed parts of her trip, claiming that a Greyhound bus driver repeatedly refused to lower the bus lift to allow her to use a restroom for six hours on a trip to Las Vegas. Another witness appears on the news tape supporting the fact that the driver failed to lower the lift for Ransom.

She says she called the company ahead to make sure they could accommodate her needs and her wheelchair. She says they told her they could and she couldn't believe what happened.

Ransom says she felt discriminated against and "even held hostage somewhat" by the driver's refusal to accommodate her need to use a restroom. Her video shows other passengers getting off and on the bus as she remained on board, unable to access a restroom at San Bernadino. The supervisor told the driver to let her off at the next stop in Riverside. According to the news video, the driver again did not lower the lift. At the next stop, the driver claimed the station was closed, although it appears open. She was forced to relieve herself in her wheelchair. On the tape at one point another passenger says to the driver "You were supposed to let her off at the last stop." It was not until the last stop that he let her off.

"It's a violation of the American Disabilities Acts probably a violation of UNRA, it's a violation of common decency," said Randy McMurray, Cochran Law Firm.

Greyhound officials said Friday afternoon that this is a very serious allegation and they will investigate. They say all bus drivers are trained to help anyone with disabilities at any stop.


Tuesday, November 25, 2008

For a spiritual emergency, press 1

A NY Times piece entitled On a Ring and a Prayer offers a tongue in cheek look at how a menu of phone options on a spiritual crisis hotline might, er, get rid of a few problems.

More Than Just a Game (2007)

A docu-drama about political prisoners of apartheid who play soccer, this film portrays those imprisoned where Nelson Mandela was held on Robben Island. It is a sports film that is about survival, an attempt to live with dignity for those who were fighting for a just cause and lost their freedom. FIFA has endorsed this film, produced by Anant Singh, whose films include Sarafina, Cry the Beloved Country, Red Dust, I Capture the Castle and the Oscar-nominated Yesterday. An interview with him can be found at the above link.

When asked about what Mandela would think about the film, he replied:

Mr. Mandela would certainly approve and enjoy the film as it tells the story of football on Robben Island, an island he spent 27 years on. There is a scene in the film where the communal prisoners see their political leaders in the B Section (the isolation cells for the influential political prisoners such as Nelson Mandela) while playing football and begin interactions with them. When the authorities found out that Mr Mandela and others were watching the games, they built a wall to stop these interactions.

Speaking of dogs (and cats)....

owner surrenders of pets are up due to the bad economy, and pet shelters are being forced to euthanize some animals due to overcrowding.

If you're considering getting a pet for Christmas, you might want to contact your local shelter. Or maybe make a donation to a shelter.

UPDATE; Pilots N Paws is a program where pilots fly dogs from kill shelters to areas where shelters have room and families willing to adopt pets.

Monday, November 24, 2008

Dancing with the dogs

Here's what happens when I start googling. I found a post about the mysterious piano out in the woods in Cape Cod, which led me to the Cape Cod Times online site. After noticing that they have a Capecast that they show on YouTube, I saw a segment on the Capering Canines of Cape Cod, a group that brings dancing dogs to nursing homes and other places. And then while over at YouTube, I found this video of a dog named Rookie and his owner dancing to a song from Grease, You're The One That I Want and I just had to share it here with my friends who are dog lovers. So here you go....

Changing attitudes toward Down syndrome in UK

More babies with Down syndrome "are being born than before prenatal screening became widespread, figures show " in the UK, according to this BBC article, in part due to changing attitudes. A survey of 1000 parents done for BBC Radio 4's documentary Born with Down's revealed that

A fifth said they had known somebody with Down's, a third cited religious or anti-abortion beliefs and 30% felt life had improved for people with Down's.

Most said they saw the future as better for children with Down syndrome.

They pointed to integrated education in particular and a greater acceptance of what it means to be different.

Give Notre Dame time, says former coach Faust

Gerry Faust is still a Notre Dame fan, despite the fact that during his tenure there as coach, things did not go as well as expected. A successful high school coach, Faust said he wasn't as tough on the Notre Dame players as he was on his high school ones, and now believes that had he been, some of the seven point losses would have been on the win side.

The devout Catholic now devotes his time to overseeing youth football leagues and his grandchildren. He is also a motivational speaker, who rarely takes fees for his engagements, seeing it as a form of service.

He's an enthusiastic fan, once arguing with a spectator at the game who complained about the playing. He now sits in the box to watch the game.

And about the present team? He says Charlie Weis is a good coach and that they need to "give it time". A perspective borne, perhaps, out of the experience of hindsight.

{This weekend, Notre Dame was upset by Syracuse, allowing them to come from behind in the third quarter on Senior Day. It's being hailed as a "humiliating loss" and a fork in the road for Weis and Notre Dame by some. Others say the bowl system still favors Notre Dame after mediocre seasons.

Check out these unusual trophy awards from the vaults of Sports Illustrated.}

Sunday, November 23, 2008


Apparently I had a lot of company going to see the movie Twilight this weekend, considering it was at the top of the box office. I've only read portions of the book series, so wasn't sure what to expect from the movie.

Not only was the movie quick paced, but it had a certain charm and humor about it that made it fun to watch. The characters were likable, except, of course, for the inevitable villains (i.e. the bad vampires as opposed to the vegetarian vampires). And the vampire baseball scene reminded me of Harry Potter quidditch matches, on a minor league scale.

Here's a video from the movie:

A Creative Ramp

This video offers a tour of a "unique accessible wheelchair ramp, from the front of the house to [the] back patio and garden." Those of us who have put ramps on houses know that designs differ, depending on the terrain, available space and environment. I thought posting this might be helpful to those who are considering options for ramps, since it illustrates how important it is to first decide which areas of your environment you want to access.

Saturday, November 22, 2008

Time to stop hugging the panda

Chinese news sources report that a 20 year old student was hospitalized and underwent surgery after breaking into the panda Yang Yang's enclosure for a hug and receiving bites on his arms and legs. Pandas do look cute. Some folks act cute too, but there's a bite to it.

This made me think about my trip to the grocery store yesterday. I needed a bag of salad and a few apples to replenish the food I have delivered, so decided to stop in and just ask for help.

I went into the produce department and asked an employee to put three apples into a plastic bag. He held up a finger and asked the assistant manager, who was nearby, if he could do that.

"No, we don't do that," the assistant manager said. "We don't have apples in bags."

I repeated the request, that I wanted three apples put into a plastic bag.

"You want him to do that?" he asked. "Why? He has other things to do."

I explained that I needed the assistance due to a physical disability.

"Why?" he asked again, smirking.

I was sitting in a power chair with all kinds of cool gimp gear attached to it. Not as if I have an invisible disability. I realized that it was pretty obvious that I had two choices: go along with this possibly extended conversation which could lead anywhere or stop hugging the panda. Although on the surface service wasn't being refused, the assistant manager was doing everything he could to make my simple request into A Big Deal and Hassle So I Didn't Ask Again.

"Your store must provide assistance to customers with disabilities under the law," I stated firmly.

He blinked at me, then motioned to the employee. "You can help her," he said.

The employee assisted me. As he put the bag of apples on my wheelchair, the assistant manager yelled across the store in a very loud voice "Thank you for going out of your way for her!" to the employee. 'I hope she appreciates that she took up your time from doing your job!"

Other customers turned around to look.

The fact that this assistant manager chose to react in such a loud and public way gave me the opportunity to record the names and numbers of a few witnesses.

Time to stop hugging the panda. This kind of behavior isn't amusing or cute.

Friday, November 21, 2008

Xavier society director helps blind read about faith

Every so often in her travels — locally or on vacation — Kathleen Lynch, director of the Xavier Society for the Blind, notices a blind lector at Mass reading from a Braille lectionary book.

Kathleen Lynch

“I know that it’s one of ours,” she said with a smile. Because of the efforts of the Xavier Society, a national Catholic press and lending library, people “are able to participate in their faith who wouldn’t otherwise be able to.
“We serve 10,000 people in the U.S., Canada, and a few other countries,” providing reading material in the Catholic tradition in the form of Braille, large print books, and audio recordings, explained Lynch, a parishioner of St. James Church in Seaford.

“Our biggest items are the stories of and books about the saints, and the Bible,” Lynch noted. The Manhattan-based society also provides a bimonthly collection of the best articles in Catholic publications, materials for daily and Sunday Mass Scripture readings, liturgical and prayer books, and catechetical texts for sacramental preparation.
With their motto, “That those without sight may see,” Lynch said, “we are the only agency providing this kind of service.” Other agencies don’t provide material of a religious nature. The society was founded in 1900 by a group of Catholic laywomen assisted by a Jesuit priest, Father Joseph Stadelman. via

The Xavier Society currently uses audio cassettes, but plan to use digital recordings and are upgrading a web site. They also offer a 800 phone line. They charge no fees for their services.

You can reach them at

Phone: (212) 473-7800 or (800) 637-9193 or FAX: (212) 473-7801

Mail address: Xavier Society for the Blind, 154 East 23rd Street, New York, NY 10010

[image description: A photo of Kathleen Lynch is shown.]

Finding Copernicus

The remains of astronomer and priest Copernicus were found three years ago near an altar in Frombork Cathedral and confirmed to be his based on DNA samples, news services reported yesterday.

Copernicus was one of the key proponents of the idea that the Earth orbits the Sun.

For many years he was a canon and only carried out his astronomical studies in his spare time. People had speculated about his final resting place for centuries.


[Although his was not the first book in the area] his publication of a scientific theory of heliocentrism, demonstrating that the motions of celestial objects can be explained without putting the Earth at rest in the center of the universe, stimulated further scientific investigations. via

Six decades passed before the Catholic church issued a decree in 1616 suspending Copernicus' book De revolutionibus, until it was changed regarding the Pythagorean doctrine. Four years later, nine sentences were thus altered.

This was in connection with the Galileo affair "- a defining moment in the history of the relationship of religion and science". Galileo was tried and sentenced for heresy for following the position of Copernicus which was felt to be against Scripture. He was put under house arrest for the remainder of his life.

Prohibitions against De revolutionibus were finally dropped in 1835 from the Catholic church's Index of Prohibited Books.

Copernicus died without "ever knowing what a stir his work would cause."

"Of all discoveries and opinions, none may have exerted a greater effect on the human spirit than the doctrine of Copernicus. The world had scarcely become known as round and complete in itself when it was asked to waive the tremendous privilege of being the center of the universe. Never, perhaps, was a greater demand made on mankind - for by this admission so many things vanished in mist and smoke! What became of our Eden, our world of innocence, piety and poetry; the testimony of the senses; the conviction of a poetic - religious faith? No wonder his contemporaries did not wish to let all this go and offered every possible resistance to a doctrine which in its converts authorized and demanded a freedom of view and greatness of thought so far unknown, indeed not even dreamed of."


Knit One, Save One campaign

Charlie is a fifth grader who is knitting caps, along with many others in his school, for the Save the Children Knit One, Save One campaign.

For more information visit their site.

Thursday, November 20, 2008

Oakland University Student Works Toward Fully Inclusive Education

hat tip to F.R.I.D.A.

21 year old Micah (pictured at left outside a campus building) was told by Oakland University in 2007 that he could move into the dorm. OU took his deposit and confirmed his move in date, but he was later advised that there is an administrative policy prohibiting that. Micah has a cognitive disability and attends the school under the OPTIONS program.

The OPTIONS program was founded in fall 2007 by OU associate professor and associate dean of Education and Human Services Robert Wiggins. OPTIONS, which derives from Oakland University Post Secondary Transitions, is “designed to provide a fully inclusive, age appropriate post-secondary education experience for students with mild cognitive disabilities.”

Fialka-Feldman wants OU’s housing policy changed so that he and the other OPTIONS students would be allowed to live on campus. Even if it’s not on a permanent basis, he would at least like to see this happen on a trial basis so OU administrators can see how it works out and then decide whether or not to continue it.

Micah's fight is about being included in the community. Many students support his request to allow OPTIONS students live in the dorms.

Below is a clip of the November board meeting at OU. The Board will not meet again until February 2009.

Take Action!

. Spread the word to the media, to disability activists and concerned community members across the country.
. Please make comments after you view the You Tube videos
. Send the stories and articles to your local media friends.
. Get the story on CNBC, CNN, NPR, Oprah. It is time for national media coverage.
. Place the links on Face Book, on your favorite blog.
. Check out
. Write Governor Jennifer Granholm at: P.O. Box 30013, Lansing, Michigan

You can reach Micah at:

Rich and Janice:

A sneak peek at the Macy's balloons 2008

Want a sneak peek at the Macy's Thanksgiving Day Parade floats ?

And here's a look at the inflation of last year's balloons, including surprise visits by all kinds of cartoon characters for the kids. You can see how large the balloons are when they're on the ground being worked on....

Wednesday, November 19, 2008

Carol Ann Campbell passes away

Former Philadelphia city council member Carol Ann Campbell has passed away. She was responsible for the creation of the Committee of the Disabled and was an advocate for people with disabilities.

National Hunger and Homelessness Awareness Week

This week is National Homelessness and Hunger Awareness Week. For suggestions on five actions you can take in five minutes, click here.

For five things you should know about homelessness, click here.

For a guide on how to get involved, click here. From their site:

Why is National Hunger and Homelessness Awareness Week so important? Participating in National Hunger and Homelessness Awareness Week not only brings greater awareness to your community, but also helps to promote the national endeavor to end hunger and homelessness. The plight of those without a home can be both lonely and difficult. Addressing their struggles by organizing and participating in this week may bring greater solidarity and understanding, as well as promote future involvement. Events, such as "One Night Without a Home," help people realize the difficulties that homeless persons daily face. Talk about these issues with your coordinators and discuss what impact such an event might have on your community. It is imperative to dispel myths that label homelessness as someone else's problem or claim that an end to homelessness is impossible.

VIa YouTube:
"This is a slide show we did using a song Tyler wrote called Sister of Mercy.We hope it will help raise awareness of the homeless problem in our country and disspell the many misconceptions about homeless people.

According to The National Alliance to End Homelessness, ( 50 percent of the homeless population are families. Sources estimate that between 23 and 40 percent of homeless adults are veterans.
An overwhelming majority (80 percent) of single adult shelter users enter the homeless system only once or twice, stay just over a month, and do not return. Approximately 9 percent enter nearly five times a year and stay nearly two months each time.
This group utilizes 18 percent of the system's resources.The remaining 10 percent enter the system just over twice a year and spend an average of 280 days per stay—virtually living in the system and utilizing nearly half its resources. Many of these individuals are defined as chronically homeless.They often cycle between homelessness, hospitals, jails, and other institutional care and often have a complex medical problem, a serious mental illness like schizophrenia, and/or alcohol or drug addiction.Chronically homeless people use up more than 50 percent of the services.
It may surprise some people to find that there are more shelters available for animals than there are for people. Due to the bad economy and funding cuts,most homeless shelters are constantly full. And those shelters are in constant need of supplies and donations."
To find out more about the homeless problem and what we can do to help, go to:

See also Summary of HEARTH Act, passed by the US House of Representatives October 2008

A beautiful Irish hymn

Be thou my vision. O Lord of my heart - I used to play this on guitar. Found this arrangement and thought I'd share it.

Be Thou my vision, O Lord of my heart;
Naught be all else to me, save that Thou art.
Thou my best thought, by day or by night,ItalicWaking or sleeping, Thy presence my light.
Be Thou my battle-shield, sword for my fight,
Be Thou my dignity, Thou my delight.
Thou my soul's shelter, Thou my high tower.
Raise Thou me heavenward, O Power of my power.

Riches I heed not, nor man's empty praise,
Thou mine inheritance, now and always:
Thou and Thou only, first in my heart,
High King of heaven, my Treasure Thou art.

(Full lyrics here.)

Tuesday, November 18, 2008

Adventures in Parking

Quite a few people who have accessible vans have told me that parking can be an adventure.

They told me stories about coming out and finding their vans blocked in by drivers who parked in the hash marks of handicap spots. Others told me how curious people are about their ramps or lifts. Many said they had trouble finding van access spots to begin with. I've included a video of a van opening and the ramp deploying for those who are unfamiliar with the space required.

The first thing I noticed was that older malls and office centers lack van access parking for the most part. The newer the buildings, the more likely I can park in the handicap spot and there's room to use the ramp. Without that, since I have errands to run or work tasks to accomplish, I have to get creative. I park in two spots, using a cone to alert drivers not to block me in or find a spot next to the end of the lot with an open space. One day I parked next to a dumpster. Not glamorous, but it did the trick.

Another thing I've noticed is that some van access spots are built right next to office entrances, meaning that deploying the ramp blocks ingress and egress into the building itself. In less crowded places, it's no big deal but in busy places, it's inconvenient for everyone. So far people have been friendly about it and are indeed curious about how the van and ramp work.

I haven't had too many problems overall. My guess is that the area I live in has better van access parking than most. I'm not leaving my Christmas shopping for the last minute though - I can imagine that in crowded conditions, finding a place to park will be an adventure.

As for being blocked in, so far so good, except for a truck that parked BEHIND the van. The explanation? *I* was parked in the loading dock spot, the driver said , pointing at the handicap spot. "I always use that to load my truck and if you're there, you can just wait for me," he said, ignoring my explanation that it was a handicap parking area.

Since he had an entire truck to unload, I just called the police and had them handle the situation so I could pull out. They gave him a ticket and also confiscated a handicap placard he had been using to park in those spots to unload his truck.

Diocese sponsors retreat for the deaf

The Northeastern Pennsylvania Catholic Deaf Association is sponsoring a retreat for the deaf Nov. 21, 22 and 23 at St. Joseph's Oblate Seminary, Pittston.

The Rev. Joseph A. Mulcrone, director of the Catholic Office for the Deaf in the Archdiocese of Chicago, will be the presenter.

The theme of the retreat is "Growing in Faith through Saint Paul."

For details, call Sr. Mary Beth Makuch, SS.C.M., at (570) 207-2213 ext. 1013.


Monday, November 17, 2008

People like you

Noticed yesterday while reading an article online in the Chicago Sun Times, that my blog post Disabled, Not Disabled from the day after the election appeared in the Chicago Sun Times via Blogburst.

I needed that after finding not one, but two, inaccessible handicapped bathrooms yesterday. Got a pointless, senseless response from one of the managers, who muttered and said "We don't owe people like you nothing."

People like you.

I wasn't shocked or stunned, as I would have been years ago. But I did remember:

Disabled. Not disabled.

Words of hope for a better tomorrow.

Sunday, November 16, 2008

Food banks in trouble

Economic woes trickle down and food banks nationwide are experiencing shortages in meeting an increasing need. Some are facing closure, which would be devastating to those who need their help.

I've noticed that some comedians and musicians in my area are performing while asking for the admission price to be a can of food for their local food bank. Bruce Springsteen has done a newspaper ad proclaiming We Can't Let This Bank Fail.

But we can help as individuals or as members of organizations we belong to as well. Food banks keep families and others living in poverty going. No child should go hungry. See this wonderful backpack program, for instance, that helps children in South Carolina and Georgia. A four dollar donation can provide a child with a backpack full of food to carry him or her through the weekend when no school meals are available.

And seniors who sometimes have to choose between buying medication or food are also affected Food banks also assist the working poor and those in rural areas.

Please take a moment to visit the NHC Database and find a foodbank in your area. Please drop off a can (or cans) of food or donate or, if you can, contact the director to organize a food drive with your group. For more information, go here.
The FoodBank is low on food

Playing in a wheelchair

3 year old Matteus, who has spina bifida, is shown playing in his new TiLite wheelchair with his sister, who is on a bike, in their driveway in this video. His laughter is infectious!

Saturday, November 15, 2008

Frustration free packaging

You know those plastic clamshells that cover so many products? Apparently Amazon is leading the way toward eliminating them and finding packaging that doesn't fight back. Consumers have gone to ER's with injuries (reportedly 6000 Americans a year) and are tired of dealing with the hassle.

Light blogging this weekend - am working. But check out my sidebar -I'll be adding posts by other bloggers.

Friday, November 14, 2008

Father Dan has passed away

Fr. Dan Schuh, pastor of St. Susanna's parish, passed away overnight. He was diagnosed in April 2007 with ALS.

I blogged about Fr. Dan this past week, having seen his photo on the back of New Mobility magazine. He was a widower who became a priest in 2003 and was much beloved by his parishioners.

Archbishop Daniel Pilarczyk called Schuh’s death a “sad surprise.”

“He was a dedicated priest and a real father to his people,” Pilarczyk said in a statement issued through Andriacco. ”His death leaves us all poorer.” via

That's some transferring!

A reader sent me this video of a paraplegic and his two kids exiting and re-entering the family van - in under 1 minute and 17 seconds.

Thursday, November 13, 2008

How did we all get here

Yesterday , while Meredith was running into New York to sign books, I was telling her about the number of people I've been running into this past week who I haven't seen in a few years. And I was in a testy mood because of it. It hasn't been easy figuring out what to say, if anything , to some people who look so shocked to run into me.

These would be the people who I didn't see because I didn't have independent transportation. The folks who sent invitations along with the phrase "...if you can get here yourself". The ones who stopped calling months ago.

"How did you get here?" one person asked me when she ran into me at a store.

"I teleported," I said, smiling.

When I went into a power chair, the exodus of folks from my life was of biblical proportions: now if I was included, I had to be transported. And I found out very quickly that it wasn't a happening thing for most people. This surprised a friend of mine, who pointed out that my manual chair was very lightweight, easily put in a car and I could be pushed in it.

Of course, that is all true. But it's not always about what effort is involved, but expectations, attitudes, perceptions.

Until I ran into this transportation issue with a power chair, I never realized that my life would become so circumscribed by how people reacted and the shamefully low level of available transportation options.

How did you get here? to a power chair user in America is not so much a question that deserves a quip as an answer, but a weeklong discussion in Washington DC .

How did we all get here?

How did we get to a place where the perception of inconvenience - and some work- keeps people literally homebound? Why are we in a place where accessible vans cost 50 thousand dollars, yet accessible mass transit is still not a viable solution in many places for so many people?

I know now that until we ask the question as a group - as Americans- who have elderly parents, family members, neighbors, church members and friends - who will be and are affected by this, it won't be answered. Not until we make a concerted effort to give the right of mobility.

On my sidebar there's a Call to action, asking people to email Obama with issues of concern related to the disability community. If you share concerns about housing or transportation, equipment or assistance, if your eyes are open about these things, then take a moment and write in. Speaking up about all of these basic needs is vital to planning solutions.

And maybe one day instead of asking a power chair user or a person with disability the question How did you get here? , the question will become How can we all get there?

Sometimes I blame myself....

that my cat is so inactive. I think - it's my disability - I don' t move around enough to help him exercise. But then I saw this video:

and I realized: it's the cat....
[visual description: A female dances to Boogie Woogie Bugle Boy while twirling a hula hoop while a cat sleeps the entire time underneath her. He does raise his head near the end.]

Wednesday, November 12, 2008

On the road again

I was driving on the highway yesterday in my van. It still has the "new used car" stickers plates etc. on it and is clearly marked as a converted van, with access ramp signs on the sides and back. (It helps when I park so no one blocks me in.)

All of a sudden I heard honking and looked over at a truck next to me.

The driver was holding up a sign that said

Disabled vet.

I nodded and waved at him. Then he held up another sign that said

Congrats on your van!

Geeze, is the disability community cool or what?

Arranged: a movie worth seeing

In this film about arranged marriages, two young female teachers, one Jewish, one Muslim, share their experiences as they go through the process. A film about diversity, faith and love. No time to write a review, but recommend seeing it.

Tuesday, November 11, 2008

Veteran's Help Network

The National Veterans Foundation offers help to vets with live help available daily 9AM to 9PM. Operation Dignity is for veterans helping homeless vets. This site (Veteran's Help Network) offers help to vets and opportunities for people to learn about their experiences and extend a helping hand.They need volunteer attorneys. Fisher House offers help to families while a vet is hospitalized. And there is Welcome Back Veterans.

There are so many organizations doing good work, but we need to remember that our donations and our help as individuals is also important. Veterans returning home face a myriad of issues. This story, about the parents of a critically injured soldier who lingered for months before dying, shows what families often face. Then there are those who lack family support.

"Often when veterans return to civilian life the transition is difficult, and they are left to face a complex set of issues including psychological disorders, homelessness and unemployment," says Jim Gibbons, President and CEO, Goodwill Industries International. "Goodwill's holistic approach to providing services to veterans hinges on developing and maintaining working partnerships with other service providers to meet the multiple needs of the veteran seeking services. via

Some of the first wheelchair users I met were vets. They were extraordinarily helpful to me. Many extended themselves by giving me wheelchair parts, helping me fix my chair, and spent hours talking to me about life in a wheelchair. I remember a few of these friends who have now passed on, who served in wars like Vietnam and Korea. I will always owe them a debt of gratitude and paying it forward is the best way I can think to do that.

Some of the vets from the current war who are newer to living with disabilities have contacted me. Many of these vets need the support of others from the disability community, who can ease their path in so many ways. Their spouses and family members also need your support. Opportunities to help folks like this are available over at any of these sites and many others. Donate to the USO, google for the site you'd like to donate even a dollar to. No amount is too small.

[To help soldiers still serving abroad in harm's way, visit to send a care package. Busy? Use for ready made packages. Call a VA hospital to volunteer to read to soldiers, a great way to connect with those dealing with disabilities.]

Veterans Day

Praying for our vets, their families and loved ones with gratitude for their sacrifices.

Monday, November 10, 2008

Blink and you miss it.....

My friend from Delaware drove up this weekend and we attached the various safety belts inside the van, hung up the CD holder, worked on my power chair so I could transfer into the van seat and then set out for Mexican food to celebrate.

"Where are we going now?" my friend asked as we left the restaurant.

I drew a blank. Hard to explain that, other than the fact that it's been a while that the wanting of going a place has been followed with the ability to do it. Hard to fathom that suddently I can go anywhere , anytime, that in the blink of an eye, it's all changed.

This is the same friend who taught me how to use a wheelchair from her own wheelchair. She taught me that brakes on a wheelchair aren't used to stop, but applied when you get in and out of the wheelchair. She led me down streets with lousy curbcuts and sidewalks and showed me how to traverse them. When I hesitated, she kept going, glancing over her shoulder, pulling out ahead but staying in sight, setting a pace. "Come on," she said. I had to set aside my fears and follow her to keep up. Not like I could get out of the wheelchair and walk. When I caught up to her, she said "You're getting faster" and pulled out ahead again. Tough love.

We got into the van, deploying the ramp, transferring into our seats. My mind was still blank. I couldn't think of anywhere to go.

She waited. I was navigating a different terrain now, an internal one, one that in some ways was more difficult, one that she understood and knew. It was a full ten minutes after she asked me where we were going that I finally answered her. It took five minutes before I answered her the next time. A minute after that.

And then, suddenly, it hit me. She was setting a pace, then waiting for me.

When we got back home, we said goodbye and she rolled up the ramp into her car. Just as she did after she taught me how to use my wheelchair, she said "I think you're good now."

After she left, I got back in the van and drove somewhere. Didn't think about it much at all.

Kind of happened in the blink of an eye.

Sunday, November 9, 2008

When mobility is a dream

Remember Christmas when you were a kid? You'd wake up early and sneak down to the tree to check your presents. The last few mornings, I've been waking up at 5 a.m. The first thing I do is look outside to see if it's real. And, yes, it is. There's a mobility van out there. Like Christmas morning, I don't go back to bed. I sit, amazed, and these words of C.S. Lewis come to mind:

The waking world is judged more real because it can thus contain the dreaming world: the dreaming world is judged less real because it cannot contain the waking one.

I am in the waking world, I tell myself. The dream I had of mobility is now part of the waking world. And then I look again.

I used to assume mobility was a right, but have learned that, for people with disabilities, it's still a privilege. When you use a power chair and need an accessible vehicle, if you can't afford the equipment, you don't get mobility of the kind others take for granted.

Yet in the waking world, your dream of mobility is with you all the time. If you go somewhere in a car, you sit in a manual wheelchair, unable to push yourself, to move independently, your autonomy denied. In your power chair , you sit watching cars pass by, knowing they won't hold you and your chair and can't take you places where others are free to go.

Maybe you don't think of words like right and privilege, but you dream of mobility. And, sometimes, it hurts. You scream down alleys but the only echo in the waking world is a voice saying this is the way it is.

When you sleep, you dream of flying carpets, teleportation, magic. You wake up and know it would take far less than magic to have mobility, but is far less likely to happen.

This is the way it is.

Every time we treat mobility as a privilege, not a right, we teach that physical limits carry a myriad of other limits with them, that people with disabilities should leave their dreams in the dreaming world and not dare to carry them into the waking world.

Yet the waking world is the only place where dreams can become real, where mobility can become a right. And to say this is the way it is keeps mobility in the category of privilege, kills hope, denies equality.

Perhaps I wake up early now because I know the limits of the dream world. I need the waking world to change the way it is.

Dreams matter.

ReliOn insulin syringe recall

Information here for recall of products sold at Walmart and Sam's Club.

U.S. health officials warned doctors and patients on Wednesday that Covidien Ltd was recalling nearly half a million single-use syringes that could pose a serious risk to diabetics.

The Food and Drug Administration said the possibly mislabeled ReliOn syringes could lead to patients receiving an insulin overdose of as much as 2.5 times the intended dose, leading to low blood sugar levels and serious health consequences, including death. via

According to the article the products were sold from August 1 to October 8 . For the lot number and 800 number, click on the above link.

Information for seniors, caregivers and loved ones

The National Senior Citizen's Law Center has materials and information on assisted living and Medicare Part D.

It also includes a link to J&J's Strength for Caring, connecting caregivers. The resource center provides information about housing, money, financial planning and insurance as well as pointing families and caregivers toward more materials. There is a message board area as well.

What a broken wheelchair means

Dave writes movingly in his post I Cease to Be, about the effect of a broken wheelchair and the unavailability of a replacement on his life - even for one day.

Then there's 11 year old Stephanie, who ran into red tape and couldn't get to school because of a broken wheelchair.

There's also waiting for the wheelchair guy, leaving you kind of stuck.

Plenty more folks in that boat.

God bless the folks out there who do understand and work hard to fix broken wheelchairs

and find other ways to keep us rolling.

Saturday, November 8, 2008

I will tell my children of this day..

“I will tell my children of this day, and they will pass it on from generation to generation and know about the first black president . And I know that he will certainly not be the last.”
essay, 10 year old Torin Wilson, Eagle Academy, Brooklyn NY

There's a great article and video in the NY Times about the reactions of sixth graders to the election of our first African American President. Pupils follow strict rules and constitute the first class at the new school, which plans to expand.

The Eagle Academy opened in September with sixth grade and plans to expand through high school. David C. Banks, president of the Eagle Academy Foundation, said the group intended to create additional schools in the same mode across the city, in seven neighborhoods that, as he put it, “generate a substantial portion of the prison population for the State of New York.” (In 2007, the graduation rate of black male students in the city was 39 percent, according to the Department of Education.) via NY

[image description: Four male pupils watch a video of Obama's acceptance speech in their sixth grade classroom at Eagle Academy, dressed in their uniforms of a light blue shirt and tie.]

Upcoming Paralympics TV coverage

NBC and Universal Sports present the 2008 Beijing Paralympic Games presented by GE to TV beginning this Sunday, Nov. 9 at 2:30 p.m. ET on NBC Sports with a 90-minute documentary narrated by NBC Sports' Bob Costas. Following the special will be an unprecedented 28 hours of Paralympic event programming on Universal Sports taking place November 10-16.


COVERAGE ON NBC SPORTS: NBC Sports will present 2008 Paralympics, a documentary narrated by Bob Costas, on Sunday, November 9 from 2:30 - 4:00 p.m. ET.

COVERAGE ON UNIVERSAL SPORTS: Universal Sports, available in 30 million homes, will present a broadcast on its 24-hour television network from 7:00 - 11:00 p.m. ET each day featuring the following Paralympic event competitions:

Mon. Nov. 10- Men's Wheelchair Basketball preliminary - USA vs. Great Britain; Wheelchair Rugby preliminary - USA vs. Japan; Swimming; Track and Field
Tue. Nov. 11- Women's Wheelchair Basketball preliminary - USA vs. Germany; Wheelchair Tennis - Men's Doubles Gold Medal Match; Swimming; Track and Field
Wed. Nov. 12- Men's Wheelchair Basketball preliminary - USA vs. Australia; Wheelchair Tennis - Women's Singles Gold Medal Match; Swimming; Track and Field
Thu. Nov. 13- Women's Wheelchair Basketball Semifinals - USA vs. Australia; Wheelchair Rugby preliminary - USA vs. Canada; Swimming; Track and Field
Fri. Nov. 14- Men's Wheelchair Basketball Semifinals - USA vs. Canada; Swimming; Track and Field
Sat. Nov. 15- Women's Wheelchair Basketball Gold Medal Game - USA vs. Germany; Wheelchair Rugby Semifinals - USA vs. Great Britain; Swimming; Track and Field
Sun. Nov. 16- Men's Wheelchair Basketball Bronze Medal Game - USA vs. Great Britain; Wheelchair Rugby Gold Medal Game - USA vs. Australia; Swimming; Track and Field
Paralympics event competition videos, video highlights, feature articles, photo galleries and more all available on

h/t JFActivist

{image description : A wheelchair racer is shown crossing the finish line, both arms upraised in front of four other racers.]

New Rule Pares Outpatient Medicaid Services

Yesterday the Bush administration acted to narrow services which can be provided under Medicaid, amidst protests from public hospitals and state officials. It would reduce payments to hospitals in a time of growing need amidst layoffs and unemployment. This action conflicts with congressional efforts to increase federal aid under a new economic plan.

In a notice published Friday in the Federal Register, the Bush administration said it had to clarify the definition of outpatient hospital services because the current ambiguity had allowed states to claim excessive payments.

“This rule represents a new initiative to preserve the fiscal integrity of the Medicaid program,” the notice said.

But John W. Bluford III, the president of Truman Medical Centers in Kansas City, Mo., said: “This is a disaster for safety-net institutions like ours. The change in the outpatient rule will mean a $5 million hit to us. Medicaid accounts for about 55 percent of our business.”

Others say it will force them to possibly reduce outpatient services like dental and vision care in the midst of anticipating cuts at the state level due to the economy.

Carol H. Steckel, the commissioner of the Alabama Medicaid Agency, said the rule would reduce federal payments for outpatient services at two large children’s hospitals, in Birmingham and Mobile.

Richard J. Pollack, the executive vice president of the American Hospital Association, said these concerns were valid.

“The new regulation,” Mr. Pollack said, “will jeopardize important community-based services, including screening, diagnostic and dental services for children, as well as lab and ambulance services.”

Congress issued a moratorium on six other rules affecting Medicaid over the past year and a half. The rule takes effect December 8, six weeks before Bush leaves office.

Larry S. Gage, the president of the National Association of Public Hospitals, said, “We will urge Congress to extend the moratorium to this rule, and we will ask the Obama administration to withdraw it.”

Friday, November 7, 2008

Star Wars: a capella tribute to John Williams


The Holy Spirit rolls in

The "Holy Spirit" is sitting outside. It is what I am calling the new used accessible white Dodge van that arrived yesterday. And it is waiting for me to ride on its wings.

After a locksmith and two battery jumps on various cars, including the one I traded in, and three calls to road service,, the van got off the truck, my old car got on the truck and I sat in the rain looking at the difference between being able to continue to work or not - accessible transportation.

For me, paratransit doesn't work. I don't have a job where I can predict where I have to go and when. It's impossible for me to give advance notice to schedule a location and still be able to do what I have to do my job effectively. And mass transit around here takes you to the malls. Period. Not to the myriad of places I need to go. I also don't have family available who can assist me in getting my equipment into a car to take me out on weekends or holidays, for errands, doctor's appointments, etc. Places I can't get any other way. And since I need a power chair to independently get around, the reality is if I go in someone's car I have to be pushed, which makes the pool of folks who can and will do that pretty small. I understand.

So here I sit this morning, my world transformed yet again. This is big. This is huge.

I have no idea where to go first. I rolled on and off of it yesterday, late and sat there in disbelief. A teenager passed by while the ramp was deployed. She peered inside the van, said "Cool," and kept walking. She had no idea she was watching the Holy Spirit at work.

I know. It takes my breath away how people are smart enough to figure out ways to help me without giving me charity and taking away my dignity. I am blessed because I work for what I get and am able to do that. Sometimes, like this morning, I get a glimpse of what a miracle it is when the impossible becomes possible with the help of friends, God and faith.

Yeah, I know it's just a minivan to everyone else. But I can get on it with a power chair, disability and all, paralysis and such notwithstanding- independently. Therein lies the difference between dignity and dependence, between self actualization and waste, between productivity and warehousing, between networking and isolation.

When our society gets that, really gets that, perhaps more people will be moved to help people with disabilities in ways that aren't about charity, but about dignity. I can only hope and pray, which, I've learned, does sometimes work.

Thursday, November 6, 2008

Fr. Dan Schuh.... pictured on the back of this month's New Mobility magazine, in an ad for Permobil wheelchairs. Fr. Schuh , pastor at St. Susanna Catholic Church in Mason, has ALS and was diagnosed in April 2007. He now shares duties with another priest at the parish.

"I just try to do what I can, and they almost make me out to be a hero," he said. "I don't feel that way. To be able to preside over Mass is an honor and a joy. I just thank them for putting up with me."

Parishioners have built a ramp, offered him a home and established Father Dan's Care Team.

Fr. Schuh is also a father and grandfather, having joined the priesthood after raising his own family and working as a manager at Kroger for 25 years, all experiences that have helped him succeed at running a large parish and relate so well to his parishioners.

I haven't been able to find a photo online of the ad, but in it, Fr. Schuh is shown standing, with the help of his wheelchair, in his robes. In smaller insets, he is shown with parishioners in various poses. The caption reads: The spirit never dies/Look closely/You can see it in the eyes. "We're not alone" So come along/Stand/And sing this song/Now until forever/You/Me and
My Permobil. The prose was written by Ekula Saq, a Permobil user since 2001

The Defeat of Amendment 51

I refer readers to a post by Bad Cripple about the defeat of Amendment 51. Please take a moment and read this piece about how the voters of Colorado defeated this on election day, an underreported story. From the blog:

While the economy is undoubtedly a major factor, I think at a fundamental level the percentage of people that voted against Amendment 51 indicate an inherent bias against people with developmental disabilities exists. Given this, what you do not read about is how woefully underfunded Colorado expenditures are for people with developmental disabilities. According to David Braddock at the University of Colorado expenditures in the state are 73 % below the national average. In rejecting Amendment 51 by a ratio of nearly 2-to-1 the voters have sent a clear message to the disability community: budgets are tight, revenues are decreasing and we do not value your existence. This reality has and will continue to hurt disabled people and their families. Simply put there is no safety net in Colorado for a group of people that desperately need one.

Wednesday, November 5, 2008

Disabled and not disabled

In his victory speech last night, President-Elect Obama named us. He recognized us. And he put us first.

This is a fact that is being greeted with joy and tears. Personally I skipped a breath.

But the words boldly stood. For the first time, many people around the world heard people with disabilities as a group recognized separately in this country at a pivotal time. It is a milestone to be named, much less named first.

So often out in society people with disabilities are treated as if we're invisible. People may stare and say they cannot help it, continuing to react in ways that are rationalized by their fears and uncertainties in approaching and interacting with us. It feels dehumanizing to me as an adult with a disability, much less its effect on a child with a disability.

Yet it is all quite simple when we are named and included. I am disabled. Some are not disabled. We are all equal.

This is a truth to carry.

Smile at me. I am disabled. Speak to me. You are not disabled. Laugh with me. Maybe both of us are disabled. Work with me. Dance with me. Sing with me. But most importantly, recognize my presence as you would anyone else's.

Tuesday, November 4, 2008

If you haven't found time to vote yet, watch this....


Sometimes living with a disability in a world designed for those without reminds me of turnstiles.

There's just no good way to get through a turnstile in a wheelchair.

I don't have to be able to go through a turnstile to live a productive life. But if there's no physical way to get around a turnstile, it's a problem and it can exclude me from getting some places which can be an obstacle to living a productive life.

It gets very personal and can be very subtle, the way a turnstile works differently for me as a wheelchair user than for someone who can walk through it, assumes he can walk through it and doesn't think about the fact that he can walk through it.

So if I sat in front of a turnstile protesting its existence when there are so many other possibilities for ingress and egress that wouldn't block wheelchair users and others, those who can walk might think that to be absurd, never having experienced the turnstile as anything but an object. They wouldn't see the turnstile as a barrier, nor would they necessarily understand that it would build a bridge toward understanding for them to acknowledge that tearing down that turnstile is the fair and right thing to do for everyone. Because some day maybe they, too, might experience mobility issues.

Perhaps they haven't stopped to consider that there were times I chose to crawl under turnstiles while someone lifted my chair over it rather than be left out. That was when I was closer to my years of living as an able bodied person, when I felt crawling was worth it. That changed when I realized that having to crawl was not acceptable, nor physically advisable.

I began instead to question why we had to have turnstiles.

Not to mention revolving doors.

Changes in Drug Co-Pays for Medicare Plans

The Wall Street Journal runs an article stating that many Part D drug benefit Medicare plans announce shifts in their terms, including co-payments and a sharp rise in premiums and recommends that people take another look at their plan in light of these changes. Beneficiaries may elect to change plans during the fall open enrollment period, running from November 15 to December 31.

As an example:

the country's biggest Medicare drug plan, AARP MedicareRx Preferred, sponsored by UnitedHealth Group Inc., is expected to boost average premiums by 18% next year to $34.92 a month, according to an Avalere analysis of pricing in five big states. The plan, which had 2.7 million beneficiaries nationwide as of August, will have the same $7 average co-payment for generic drugs. But consumers buying brand-name medications on the insurer's preferred-drug list -- such as cholesterol drug Lipitor and Nexium for heartburn -- will have to shell out $36.40 in average co-payments, up 21%, for each purchase, according to the five-state study.

Humana Inc.'s PDP Enhanced plan, the third largest, will see a 51% average rise in premiums. Average co-payments for generics will surge 75% to $7, and 60% to $40 for preferred brand-name drugs.

The government does not regulate prices on Part D plans. For more information, click on the link above for a detailed article that should help you navigate through the best plan for yourself or your parents or loved one.

[For further information and assistance on Part D plans, visit the Center for Medicare Advocacy.]

See also a Guide for Dual Eligibles (on both Medicare/Medicaid)

Monday, November 3, 2008

Babies Perfect and Imperfect

Babies Perfect and Imperfect is a piece in First Things written by Amy Julia Becker, a student in a theological seminary, who is the mother of a child with Down syndrome. Her daughter Penny was born over two years ago and the author writes of her own transformation in defining "healing" and the definition of inclusion.

She candidly admitted that she reviewed her own theological suppositions:

And I wondered—Was Down syndrome a product of cosmic disorder? What did it mean for Penny, extra chromosome and all, to be created in the image of God? Could Down syndrome have existed in the Garden of Eden? Would Penny have Down syndrome in heaven? In other words, was Down syndrome a part of God’s good creation, or was it evidence of creation gone awry?

She also discusses the writings of Yong and Reynolds:

when we conceive of healing simply as miraculous cures for abnormal states of being—blindness, deafness, cognitive delays—we miss the point. They do not see the transformation of every physical limitation as a guarantee, or even as necessary for fulfilling our human potential, and they construe healing in a holistic sense, as the inclusion of all people, regardless of bodily or mental function, in communion with God.

h/t NJCIM list serve

I would go further and suggest that the focus needs to be on the ways in which Christian communities still define those with disabilities as flawed and in need of healing, as opposed to seeing them as full members with many gifts to offer to others with their presence. Such a stance blocks a dialogue toward inclusion with its assumptions and misperceptions. In this sense, the community that excludes disabled members is, in and of itself, in need of a spiritual fix.

See also Amos Yong’s Theology and Down Syndrome, Thomas Reynolds’ Vulnerable Communion, and Hans Reinders’ Receiving the Gift of Friendship

Sunday, November 2, 2008

Fearnley and Hunkeler win NY city Marathon 2008

Edith Hunkeler and Kevin Fearnley beat out the field to win this year's NY city marathon, wheelchair division. (They are pictured above after their win, holding the garlands.)

Hunkeler has won all four times in four starts and was ahead the entire race. Fearnley won his third consecutive race.


The Salad Bar

It may seem like a small thing to some of you, but I don't often get to choose things from salad bars. Physically, it's not a happening thing.

However, last night while out with friends from Ski for Light, they not only offered to help with the salad bar, but insisted.

And, better yet, we had fun doing it! People at the surrounding tables were chuckling as we reviewed the salad bar, deciding on what we liked and disliked. A few craned their necks to see if they had missed an item themselves because we were sooo thorough. Clearly they salad bar envy. Certainly they didn't have as much fun filling their plates as we did!

So it's only fitting I share with you all this ode to salad bars this sunny Sunday morning that this YouTuber came up with:

Saturday, November 1, 2008

I Am Potential by Patrick Henry Hughes

A new book by a blind musician, Patrick Henry Hughes, is called I Am Potential: Eight Lessons on Living, Loving and Reaching Your Dreams. Born without eyes and with other physical disabilities, Patrick writes about his family's experiences and his own, emphasizing staying positive and recognizing potential.

Excerpts of the book can be found here.

[image description: The book cover is shown. The title of the book I Am Potential is on top. Underneath is Eight Lessons in Living , Loving and Reaching Your Dreams. The author's name is beneath an image of the author in his wheelchair, playing in his marching band uniform, being pushed by another student dressed in red.]

Body of War and about buzzwords

Sorry for the light blogging lately. Work has been busy. Can't talk about that, but I can talk about this: buzzwords.

As election day looms, buzzwords fly around. I find them dangerous. Any shortcut to decision making has the potential to be dangerous. It's like getting directions off of Mapquest and being surprised when one of the on/off ramps strands you at an intersection you can't find on your map.

Buzzwords can lead you to nowhere, because there's very little information behind them. This isn't just true in politics, it's true in life when you're self advocating. I've seen buzzwords thrown at parents in IEP meetings, buzzwords thrown at friends and clients when trying to gain access under the Americans with Disabilities Act and buzzwords tossed in my direction when I start talking about which legislation which candidate supports. It's as if people use them to defend against having to think too much. And yet we know that they are buzzwords.

I watched Body of War last night. It's an antiwar documentary about a guy named Tomas Young who joined the Army on September 13, 2001, two days after 9/11, served in Iraq for five days and sustained a spinal cord injury. He was in the hospital for a little over two and a half months and came out sick, not just paralyzed. His medicine trays (at least two of them, the kind that hold a dozen or more "servings"), were full. He became lightheaded easily, had the quadriplegic body temp issues, still had lead in his knee due to surgery that wasn't done, UTI's, etc. He felt he wasn't getting adequate care and his conversation with a Vietnam vet supports this. Despite this, he and his wife traveled to speak at various Iraq Veterans against the War functions. He spoke under outdoor tents, at churches- anywhere people would listen.

Interspersed with clips of his life being shown was the 2002 vote taken in support of the Iraq War, and you know what it consisted of? Repeated buzzwords from members of congress' speeches right before they cast their votes. Repeated. Buzzwords. Sen. Byrd opposed the war, as did 22 others - a total of 23 votes against.

Sen. Byrd met with Tomas at the end of the film and they read the names of those who opposed the war. It was a touching moment, when the senator thanked Tomas for his service and Tomas thanked the senator for his.

The next time you hear buzzwords, remember this: it's your country. It's dangerous not to know information and rely on buzzwords when casting a vote. It can strand you in a place you don't want to be.

For photos of Tomas Young go to the link to read an article in the Nation called War is personal.
To see how Tomas is doing more recently, click here for an article from 2008