Wednesday, December 31, 2008

Stolen Scooter: Spread the Word

Greg over at Pitt Rehab writes that his friend David, a tireless volunteer, had his scooter stolen Christmas Eve. The loss of the scooter, which will cost approximately $2600 to replace, robs David of his mobility, according to this article. David just wants the scooter back and has offered a reward.

Greg writes:
David is a retired OVR counselor, tireless volunteer and currently a professor at the University of Pittsburgh. His scooter enables him to accomplish so much, without this technology it's very difficult for David to get around. I hope the individuals who stole david's mobility have the courage to return it. David gives so much to the community it's really a shame that someone in the community would rob him....

Please help to get the story out and hopefully get David's scooter returned.

Where are the magi?

I was reading a story about how the faint light of an mp3 player led rescuers to a skier and snowboarder lost in the Swiss mountains over the weekend, when I noticed that the magi over at Meredith's blog are still wandering around.

They encountered giant stuffed sea creatures days ago, a scene that made me think of Homer's Odyssey as the three small ceramic figures found themselves surrounded by stuffed, glow colored amphibians.

Fortunately, they wended their way through and continued on their journey (which was stalled for weeks when they became transfixed on velcro rollers. A reader remarked that perhaps they thought the rollers were a giant Advent wreath.)

Who could blame them? Like all pilgrims, led by a desire and intention to experience a source of awe, the magi pace their journey accordingly. It isn't always easy. Some feel world weary at times.

A cold coming we had of it,
Just the worst time of the year
For the journey, and such a long journey:
The ways deep and the weather sharp,
The very dead of winter.'
And the camels galled, sore-footed, refractory,
Lying down in the melting snow.
There were times we regretted
The summer palaces on slopes, the terraces,
And the silken girls bringing sherbet.
Then the camel men cursing and grumbling
And running away, and wanting their liquor and women,
And the night-fires going out, and the lack of shelters,
And the cities hostile and the towns unfriendly
And the villages dirty and charging high prices:
A hard time we had of it.
At the end we preferred to travel all night,
Sleeping in snatches,
With the voices singing in our ears, saying
That this was all folly. [T.S. Eliot The Journey of
the Magi]

Folly? I don't know. A pilgrim's spiritual path leads him or her
away from the mundane to a greater understanding and deeper
appreciation of what lies ahead. Seeing the world through
the eyes of the magi reminds me of the
importance of my spiritual bearings as I listen to story after
story from 2008, lists of "the best of 2008" and commentaries on
what happened last year and what will happen next year.

It isn't always clear what I'm seeing when I first happen upon
it, but I know that if I journey with a sense of hope and certainty,
my pilgrimage will lead me in the right direction.

I wish everyone a happy new year.

Tuesday, December 30, 2008

He didn't go out much

My mother's roomie in the hospital told me when I visited that her late husband had a disability and used a scooter. She also told me that he didn't go out much because he was "one of those people who didn't want others to see his disability". She added that, as much as he loved her, he wouldn't have visited her in the hospital.

And with that remark, a look of profound sadness crossed her face and she went back to her bed.

It was a poignant moment.

As we near the end of 2008, I have a few prayers I've added to my repertoire.

I pray that more people with disabilities will have the right to mobility, that having the equipment or guide dog or TTYT machine they need to communicate will be considered a right, not a privilege.

I pray that there will be more physical access and that attitudes will improve, that the stereotypes and misperceptions about disability will fade and disappear.

I pray that we will see both the gifts and talents that people with disabilities have and the love they bring to the world.

I pray that there will be more caregivers who are reliable and kind. I pray that we begin to acknowledge they deserve a fair and just wage for their work and that they deserve respite and support.

I pray that those who raise their voices on behalf of our brothers and sisters with disabilities be given strength and encouragement, but also discernment and wisdom.

I pray that the doors of institutions open and people with disabilities take their place in our communities, with dignity and joy.

I pray that services be provided to avoid neglect and abuse of people with disabilities, not out of charity, but brotherly and sisterly love.

I pray that children no longer ask what's wrong with a person with a disability, because they grow up with a family friend or neighbor who has a disability and see disability as part of being human.

I pray for those with invisible disabilities, who may journey through life feeling alone. May they find the support they need.

I pray for those who are bullied because their disabilities are visible, remembering those who died this year as a result of unnamed hate crimes.

I pray for the souls of those who did not go out much and hope that, in memory of them, all of us will vow to work toward a kinder and gentler world.

Monday, December 29, 2008

Parrot Minikit Chic offers voice dialing

I haven't seen one of these "hands free" kits that pairs with your bluetooth phones, but thought I'd pass the information along since I know there are readers out there with disabilities who look for less expensive alternatives in mainstream technology than those offered with the "disability" label attached.

This bluetooth " hands free" kit does, however, have buttons, so as for it being completely hands-free, I don't think that's true. But its versatility and adaptability offer unique uses: this device, which sells for around $109, can be used in your car, home or office. After pairing it with a bluetooth phone nearby, it synchronizes its phonebook with the phone's contacts and, when you say the name, it will dial the number without requiring any training. It pairs with up to five devices, allowing the user to take it from one location to another for use with different phones.

Made by Parrot (who also make some serious voice recognition microphones and headsets), it offers a highly sensitive microphone. It features audio output via a vibrating panel. For more information, visit their site. If you can manage a few buttons, this device might work for you. Here's a description of the buttons over at Tracy & Matt's technology blog:

The Parrot MINIKIT Chic requires only three buttons to operate it. There are two rectangular buttons to make and end the call plus the round button in the middle that serves as a menu button and volume control. As there is no screen on this MINIKIT the menus are accessed by voice prompt which allows you to change things like the language setting, volume settings and Bluetooth pairing. In practice I don’t think you’ll need to use the menus at all.

For their review click on the above link.

[visual description : The minikit chic is shown. It is 4.33 inches long by 2.36 inches wide, 1.14 inches thick and weighs just under 3 ounces. It has a black background with a floral design and silver trim]

Sunday, December 28, 2008

Why assume that heaven means you can run and skip?

Or, more exactly, that heavenly bliss requires it.

Remarkable words in the NY Times from Peter Singer, who wrote recently about knowing Harriet McBryde Johnson. An excerpt about meeting Harriet and having dinner with her:

After she spoke, I arranged for her to have dinner with a group of undergraduates who met regularly to discuss ethical questions. I sat on her right, and she occasionally asked me to move things to where she could reach them. At one point her right elbow slipped out from under her, and as she was not able to move it back, she asked me to grasp her wrist and pull it forward. I did so, and she could then again reach her food with her fork. I thought nothing of the incident, but when she told some of her friends in the disability movement about it, they were appalled that she had called on me to help her. I’m pleased that she had no difficulty with it. It suggests that she saw me not simply as “the enemy” but as a person with whom it was possible to have some forms of human interaction.


And Singer writes about their ongoing email correspondence and ponders a few questions further on:

Her life was evidently a good one.....I know that surveys have found that people living with disabilities show a level of satisfaction with their lives that is not very different from that of people who are not disabled. Have people with long-term disabilities adjusted their expectations downward, so that they are satisfied with less? Or do even severe disabilities really make no difference to our happiness, once we get used to them?

h/t to Meredith (thanks!)

Saturday, December 27, 2008

Sorry about the slow blogging

I'm using the days off to convert my work into accessible form, so it's less hectic during the work week. Asking for prayers for my mom who had a bad fall yesterday, broke her pelvis and wrist but, fortunately, is otherwise okay.

Thursday, December 25, 2008

Merry Christmas !

[visual description} A photo of Buddy, my long hair tuxedo cat (mixed Persian/Angora), with a red Christmas mitten propped up against him. (Not looking real interested in 'wearing' any Christmas outfit, so I didn't even try. )

As for me, I got my dream of a "macadam Christmas" = snow and ice melted!

Worship Fearlessly: Christmas 2008

This Advent I've had the experience of being a reader for Meredith's next book. I've done this before on other books she's written, but this time her writings about the Jewish roots of my faith led me to a new understanding of the importance of worshipping fearlessly. Reading about how forms of worship have changed and how rituals developed made me realize what kind of world Jesus Christ was born into - a world of lightness and dark, a world where he sought to bring peace.

He challenged many, teaching that there are both public and private ways to worship God and that's why we, as humans, need to be careful about judging each other. Those who may appear to pray most earnestly in the pew next to you may be thinking about the last episode of Heroes!

Yet, on the other hand, He taught us that truly worshipping God fearlessly means being willing to have our motives questioned, to take risks, to follow a path that others may not understand. It means following the teaching to love our brothers and sisters in Christ and treat them as equals. It means not worrying as much about what others think of us in this world.

May we all choose to worship fearlessly as we celebrate in joy this Christmas, acknowledging God's great mercy and love as we strive with hope to follow His will in our lives.

Wednesday, December 24, 2008

O Holy Night

Merry Christmas everyone.

Hailed as NOT Tiny Tim...

...The Cripple of Inishmaan is playing in New York and a review can be found here. It opened Sunday at the Linda Gross Theater and features Cripple Billy who the reviewer notes is not about to say "God bless us, everyone." The 1997 comedy is written by Martin McDonagh.

With his twisted body and wheezing cough, Billy is the pride and woe of the women who raised him, Kate and Eileen (Ms. Mullen and Dearbhla Molloy, both wonderful), who run a tidy but understocked country store. (Francis O’Connor’s set is a melancholy blend of barrenness and hominess.) Billy’s restlessness disturbs his protective guardians. “Stop thinking aloud,” Eileen tells him. “Did you ever see the Virgin Mary going thinking aloud?”

The "rural boredom" leads to lives of quiet desperation among other inhabitants: one who talks to stones, another who tosses eggs at folks. But central to the play is the rise and fall, so to speak, of Cripple Billy who has dreams of Hollywood and fame.

Below is a clip of one professor's take on the play.

You didn't think a Christmas would go by without blogging about Tiny Tim, did you?

Tuesday, December 23, 2008

Lighthouse choral group piece

Congratulations to my friend Louise and other members of the choral group at the Lighthouse in New York who were recently featured in a NY Post video.

That's no reindeer - it's a donkey!

BBC reports that kids in a Gloucestershire village will be receiving holiday gifts from Teddy the donkey, shown in the photo at left, with two side bags filled with presents and a garland around his face, as he's petted by Anna Usborne, seated on the ground.

Anna and her donkey committee purchased Teddy to reach homes on a steep hill that no vehicle can climb. She says the donkey also delivers local produce and newspapers on Saturdays.

She said: "It's something extra special at Christmas, beyond just eating and buying presents. It brings the community together.

"The donkey is very much part of the Christmas story with Mary being taken to the inn, and I don't think too many children will be complaining it's not a reindeer."

Teddy has proved so useful in the village that now an "apprentice" donkey called Chester has been taken on.

Home Health Aides: Why Hire from an Agency?

The first of a three part series in the NY Times concerning home health care aides and agencies, which consists of an interview with the head of Partners in Care, an affiliate of the Visiting Nurse Service of New York that is run by Marki Flannery.

An excerpt :

Part of the answer lies in understanding that there are for-profit home health care agencies and not-for-profit agencies. The biggest difference between those two types of organizations is how they make business decisions. For-profit companies often select the kind of cases that will make them the most money and turn away other cases. Or, they don’t employ certified home health aides at all. Their people are not trained to do the same things for you as are certified aides. A not-for-profit agency doesn’t turn away cases.

...It is also important to learn about the full set of resources that a home health care agency can offer you because health care situations can change overnight.

...So, if your elderly mom’s condition worsens and care is needed that will be covered by Medicare, we coordinate that care so your mom gets the medical attention she needs and Medicare covers the cost. Or, if your mom needed care that was initially covered by Medicare but now her condition has improved and Medicare will no longer pay, you can transition your mom to care you pay for privately while keeping the same home health aide.

Monday, December 22, 2008

More Christmas services for Deaf and HOH

From the Archdiocese of Philadelphia, PA, ASL Christmas Masses:

Our Lady of Ransom Chapel
Unruh Street and Roosevelt Boulevard
Christmas Eve 6:00 PM
Christmas Day 11 AM

St. Stanislaus Church, Lansdale, PA
Main Street and Lansdale Road
Christmas Eve 5:15 PM

Sts. Peter and Paul, West Chester, PA
West Chester Pike and Route 352
Christmas Eve 6 PM

St. Francis Assisi Church,
Norristown, PA
Marshall and Buttonwood Streets
Christmas Eve 4:00 PM

St. Pius X, Broomall, PA
220 Lawrence Road
Christmas Eve 4:00 PM

Epiphany of Our Lord Church,
South Philadelphia
11th and Jackson Street
Christmas Day 11:00 AM

Our Lady of Mt. Carmel, Doylestown
East State Road
Christmas Eve 6:00 PM

St. Joseph, Warrington, PA
Easton and County Line Road
Christmas Day 11:00 AM

St. Norbert Church
50 Leopold Road, Paoli
Christmas Eve 11 PM

St. Anselm School Hall
12670 Dunks Ferry Road, Phila.
Christmas Eve 4 PM

New to the blogroll : Witticisms

Troy and Jodie Wittren blog over at Witticisms, where you'll find posts and articles about living and laughing with a disability.

Troy has CP and is married to Jodie - here's an intro from their sidebar:

Jodie and I have been married since 1990. We met in preschool (she was Jodie Hildenbrand back then), went separate ways in the fourth grade (mainstreaming) and we met up again 16 years later. In 1995 we had a son, E. Our lives were changed forever!

We both work full time for Child Welfare. Jodie is an office manager, and I am an administrative assistant. Jodie is a wonderful speaker; I am a writer.

Go on over and say hi to the newest addition to the blogroll this Christmas week.

Grinchy weather

Snow and ice and slushy roads are causing holiday travel havoc already across the US.

I woke up and I'm cold - and I'm not even outside! Alas my heat controls are not accessible and I need to put that on my wish list. Grinchy weather. [update: A jogger who was passing by put the heat up yaay. Apparently a marathon runner. Brrr.]

Safe to say, it's cold here. Last night (or early morning) I heard a car traveling down the icy side of the street. Its wheels began to spin as it periodically got caught on the ice. I think it might have hit something, because several police cars sped by shortly afterwards. The grinch at work.

The grinch doesn't always win though. With the delivery of another wheelchair yesterday, one more person will have equipment he needs under their tree this Christmas. I fell short of delivering all that I wanted to, because I didn't have enough funds for shipping. Maybe I'll be able to budget more in next year. As the economy gets worse, more people can't pay their own shipping.

Some parents this year are wondering how to tell their kids that Santa will bring fewer toys and goodies. Because I just don't want parents having to tell a child they don't have money for a wheelchair that works, I give kids a priority. Because the grinch should be a cartoon, not a reality for kids.

Sunday, December 21, 2008

New to the Blogroll: Wildkat Blog

I'm very glad Kimberley left a comment yesterday so I was able to find her blog and add it to my blogroll!*

Kimberley blogs over at Wildkat Blog She is legally blind and acquired quadriplegia in 2004 and uses a red Quickie GT wheelchair and her guide dog Sophie to get around. Right now she's blogging about looking for a new apartment and working her way around in the snow to grocery shop. Her laptop broke recently and she plans on getting a Mac next time due to the Voiceover program,but has to plan for the added cost of transferring accessible software to a new laptop (any tech people out there who can help? go on over.)

I wish her a happy holiday and have added her to my blogroll and google reader so I can follow along as she looks for a new place to live. I can tell from reading her blog that she will be part of the interesting and engaging discussion that goes on in the disability blogosphere.

*I'll admit that is often how I *find* blogs these days,so if you have one, don't be shy about commenting!

Unemployment, disability and recession

Right now it's raining, washing away the snow and ice from the storms we've had.

I've been thinking about a conversation I had with a friend on Friday. She has a disability and was laid off about six months ago. She hasn't had much luck finding a job, even though willing to take a drastic pay cut. In fact, she had to push to even get accommodations to get into an accessible building for an interview.

Is it harder to get a job if you have a disability? Yes, it is. The unemployment statistics for people with disabilities are dismal, even when we're not in a recession. In many ways this recession is silently undoing progress on the employment front for many with disabilities.

Barriers to employment remain, whether there are issues of access and equipment or downright discrimination. No, you don't have to tell an employer what your disability is, but if they can see it, I'm not sure what protection that right affords. Even if they cannot tell from your physical appearance what your disability is, how do you explain what you need without saying what at least some of your physical limits are? You need to be proactive and, in many cases, be prepared to dispel some of the myths about being disabled to employers. This may not be fair, but it's realistic advice in today's job market.

I've watched my friend work ever since she graduated college. I've seen her convince colleagues and bosses who were afraid she wouldn't be able to do the job that she would be a valuable team member. I've seen her get salary raises and succeed. And, mostly, I've seen her become a professional in her field, her disability no longer that much of an issue.

But now, unemployed, she tells me that her disability looms large in interviews, yet again. She tells me that there are many other candidates for each job she applies for and she is concerned that those without disabilities will be chosen if they have the same qualifications, even though that's not supposed to happen.

I'm watching the rain wash away the remnants of the storm and thinking about my friend and others with disabilities who are losing their hard earned jobs. I'm searching for words of reassurance to tell her. Keep the faith, I tell my friend. There are people out there who will look at your resume, not just your disability. And they will not do things like cancel interviews after finding out she has a disability or tell her she has to crawl up steps to get into the building. They will listen with an open mind when you explain how you have been able to do the job for more than a decade. They will consider your application fairly, which is all you can ask for.

And perhaps they will consider this: the question to ask when interviewing a person with a disability is this one:

Does your disability affect your ability to do the job?

Because, in the end, that is what matters.

For all those, disabled and not, who are losing jobs they have proven they can do, you are in my prayers.

Secret Santa concentrates on working poor this year

Saturday, December 20, 2008

Christmas speaks to everyone; it celebrates the gift of life – often fragile or endangered – and the fulfilment of our deepest hopes for a world renewed. The present economic crisis, causing so much suffering, can however help us to focus on the spiritual meaning of Christmas, and to welcome into our hearts the hope brought by God’s coming among us as man.
Pope Benedict XVI, Weekly General Audience

Let it snow....but follow the snow removal laws!

In this video from last winter, a wheelchair user in Denver attempts to travel the three blocks from his home to work, showing how curb cuts and sidewalks and streets are still impassable despite weeks to clear them. Obviously this can happen if snow removal laws aren't set into place and properly enforced.

For those of you new to powerchairs, here's a great article to get you through the winter from Mark Smith over at Wheelchairjunkie. Snow and Powerchairs He discusses these and other questions:
What's the hype and what's the truth about how deep the snow can be? Should you bring someone along and, if so, when, in case you might get stuck? What about salt and snow getting on your power chair?

Friday, December 19, 2008

Vulnerability, invulnerability and disability: Where's my power up?

One day my nephew and I were talking about our disabilities. He was describing a situation in which he felt vulnerable to teasing by other kids due to having to do something in a different way. When I explained the word vulnerable to him, his eyes widened and he said "Oh! I heard that before. In video games, you're invulnerable if you use power ups." Then he shrugged and said "I wish I could do that in real life."

Many people with disabilities blog about vulnerability and disability, although they may not ever use the word vulnerable. However, it's there, part and parcel, when they speak of depending on caregivers or equipment. It's there when you go out in public looking different, doing things differently. It's there when you have to follow arbitrary rules that don't work for your situation, that are set in place by those who have never been disabled, who don't understand what living with a disability is like. It's there when you're so tired because your equipment broke, yet you have to carry on as if nothing's wrong.

It's there when your disability involves hidden factors that no one can see or understand as well. There's a vulnerability to that which is different - a loneliness, perhaps, an angst that many write to me about , almost envying that my disability is so visible. And I understand that because my disability also involves things people can't see.

I told my nephew that I've learned that people react to my vulnerabilities differently. Some are protective while others act inappropriately. They may laugh or tease or even take advantage. Then there are those folks who are real enough to just be around my disability without acting too differently. I can sense when people see me, not just the disability. But in the end, the choices I make - and that he will make- about living with a disability are in his own control. It is, so to speak, him at the joystick.

I explained to him that "power ups" involve things like working on your self esteem and using a sense of humor to get through situations. "Power ups" also mean not accepting the labels and boxes that come with disability and insisting, through perseverance, on doing what's important to you.

My nephew just made the honor roll last semester, so I know he was listening. I know he had to fight off lots of those "enemies", just like in video games, like uncertainty and fear. He had to arm himself with the right equipment and bring team members with him who would help him out as he went through level after level. And, most of all, he had to remind himself that those "power ups" are always there within his reach, even when he feels most vulnerable.

Yes, he is a winner. I am very proud of him.

Hunger extends its reach, study finds

Feeding America, formerly known as America's Second Harvest, released a study finding that

36% of low income households say they ate less or skipped meals because they didn't have enough money for food, and 40% say they chose between food or paying for utilities in the past year.
...The number of people receiving food stamps jumped from 26.9 million in September 2007 to a record 31.6 million in September 2008, according to the U.S. Department of Agriculture.
The USDA's annual report on food security found an increased number of households with children, 323,000 in 2007, who didn't have enough to eat, compared with 221,000 in 2006.

Rising food prices and unemployment are cited as among the reasons for the rise.

Feeding America has obtained grants under which they can provide 8 bags of groceries for every one dollar donation or fill more bowls of food for every dollar donated. For more information about helping those who are hungry, please go here.

To read about their survey , please go here.

Thursday, December 18, 2008

Project: Possibility

A two day software writing competition at USC recently developed software for use by people with disabilities. Sponsored by a nonprofit corporation called Project: Possibility, which was set up by computer science students and graduates.

One computer program would allow vision-impaired shoppers to point their cellphones at supermarket shelves and hear descriptions of products and prices. Another would allow a physically disabled person to guide a computer mouse using brain waves and eye movements.

The two programs were among those created by eight groups of volunteers at a two-day software-writing competition this fall. The goal of the competition, sponsored by a nonprofit corporation, is to encourage new computer programs that help disabled people expand their capabilities.

The effort toward developing software is led by volunteers. The project has operated on a sole $15,000 grant to date and has no plans to commercializing its efforts, but to remain open source, although it was decided to create one paid position.

Project:Possibility directors have plans for more ambitious projects. First, there will be a competition in February with teams of computer science students at the University of California, Los Angeles, in hopes of multiplying the number of programs to help the disabled. The project also plans to create a worldwide open-source Web site on which disabled persons and software developers can collaborate on new ideas and add to existing programs.
What’s great is that companies like Google and Mozilla support our projects,” Mr. Leung said. The companies gain by getting ideas on technological breakthroughs and seeing ways to adapt them to everyday products. One Project:Possibility program, for example, called Community Captioner, integrates subtitles with YouTube “so the hearing-impaired can have sound with their videos.”

Also check out Matchyard on Facebook, developed at USC Stevens, to help innovators connect via their Facebook pages.

[h/t to Julana at Life in the Slow Lane for sending this article along]

Stand if able: Disability & the church

Here's an interesting video that talks about some metaphors regarding disability, such as disability and sin, and also has a thoughtful discussion on disability and inspiration.

Wednesday, December 17, 2008

Announcements: Christmas services for deaf and HOH

Please feel free to forward information you may have about services in your area. These were obtained via the NJCIM list serve. (Either leave them in the comments or email me.) Thank you everyone.


















11:00 a.m. Sunday, Dec. 28th Mass with Fr. Brian O’Neill…please join us!


St. James' Episcopal Church at 214 Washington Street in Hackettstown NJ offers an interpreted
service at 4:30 pm Christmas Eve.

The church offers sign interpreted services every Sunday, at 8 and 10
am, and all parish events offer a professional interpreter as well.

The parish is equipped with Assisted Listening Devices, for hard of
hearing people, those with hearing aids (with or without T-coil) and
those with cochlear implants (connection required, supplied by
person's provider).


A regularly scheduled ASL Sunday Mass is held at 1 p.m. at St. John's parish on Mulberry Street in Newark NJ.


There will be an interpreter and Assistive Listening Device available on the first Sunday of the month at 11am located at:
St Peters The Apostle Church
94 Somerset St
New Brunswick, NJ 08901

There also will be an interpreter on December 24 at 11pm to 1am for anyone that may be interested to attend to midnight mass.

Sisters of Mercy's motherhouse in Brooklyn closes

After 146 years, sisters are bidding each other farewell as they move to other places as the Convent of Mercy closes its doors after the order decided that money for renovations that would cost more than 20 million dollars, including accessibility needs for an aging population, could better be spent to promote its work elsewhere.

The convent, also the motherhouse for the order where retired nuns stayed, has a long history dating back to days before the social services system took care of orphans. Nuns of the order, also called the Walking Sisters because they went out into the community to help those in need, took in children and cared for thousands of them. The chapel had small pews built in the front for the youngest children, their place of honor.

You can read about the convent's history here.

I'll be keeping these good women in my prayers and my heart as they adjust to new homes, not easy to do, particularly at this time of the year. Please join me in prayer if you wish to.
[image description: in the photo, sisters say goodbye to each other. One nun kisses another in a wheelchair on the forehead as others have a conversation.]

Tuesday, December 16, 2008

Create your own emoticaroler

Mass for the Unemployed held in Wisconsin

Madison bishop Robert Morlino will hold Mass in Janesville, WI for the unemployed, underemployed and their families. More than 5000 families are affected by the closure of a GM plant on December 23, along with layoffs by other companies in the area. The Mass is open to everyone concerned about the economy.

It's a time of great economic uncertainty," said Father Randy Timmerman, pastor of St. John Vianney Parish in Janesville.

"How do we reach out to our neighbors and find some hope? As people of faith, we trust that God is with us. We hold in prayer so many lives affected," he told The Catholic Herald, Madison's diocesan newspaper.

Father Timmerman said the bishop's presence at the Mass would be a sign that the wider church in the Diocese of Madison cares about the people suffering from the economic crisis.

"It is important that we turn to the Lord and realize he is with us at this time of uncertainty," said the priest.


Monday, December 15, 2008

CNN piece on SNL and the Governor Paterson skit

I can take a joke. But only 37% of disabled people are working and I’m afraid that that kind of third-grade humor certainly adds to this atmosphere. Let’s just say I don’t think it helped,” Paterson told the Daily News on Sunday.

Sunday, December 14, 2008

Mocking disability- funny NOT

Society's discomfort with the open presence of disability in community, and especially in positions of power, was obvious this weekend when Saturday Night Live broadcast a skit featuring Governor David Paterson in which the cast mocked his blindness. As this post points out, any politician is fair game for policies, etc., but ridiculing his disability by airing a skit portraying him as wandering around a stage and holding a chart upside down amounted to nothing more than mocking his disability.

This kind of mocking comes from a sense of entitlement, where the person mocking disability feels superior.

Worse than the actual mocking, however, is society's refusal to even look at the dynamics of such cruel jokes. A lack of dialogue on this subject spells out a tacit agreement to sanction blatant disrespect to people with disabilities . It maintains the status quo :the able bodied have a right to make fun of disability and those in a condition of disability. This has been going on since biblical times. There is nothing creative or cool or new about it.

If all some see with their eyes or hear with their ears leads to cheap laughs at the sake of another human being's dignity and feelings, if their hands only move to applaud this kind of mockery, I pity them their so-called abilities. They are failing to see or hear or embrace the full humanity of those with disabilities.

My greatest gift

I get to witness the interplay of faith and action in so many lives that I consider this to be my greatest gift from God. I see people who are in despair experience hope from others, I see spiritual generosity on small and large scales, I see friendships form out of want and need. I see great resilience in others. And, yes, sometimes I see human failure to respond to opportunities.

Sometimes people email me for assistance and I try to find them what they need, whether it's a wheelchair or accessible housing or a local hookup to support. Some people tell me they've lost their faith because they have prayed for certain things to happen and God didn't fix the problem. I tell them that going through spiritual "dark" times happens, and has even happened to saints. Life can be tough. I also tell them, however, that praying without taking action is not what I recommend. There are some areas where we have to do the footwork and make ourselves ready for God's help. This means taking action.

Although I believe that God works in our lives, I also believe that if an opportunity comes along, you need to be as ready as you can be to make it work within your own abilities. The spiritual side to this is that God knows what we can and can't do. In other words, what I've seen in my life is that if people do what they can, opportunities often come along that fit their circumstances. I'm no Pollyanna and I'm not saying things always work out - at least they don't appear to, based on my limited human perspective - but I've also learned that praying for specific outcomes for people is humbling since God generally has a better plan in mind than I do for most, including myself. But if we don't do what we can to better things, we may not be ready for what chances come along.

The good news is that God continues to work in our lives even if we miss opportunities. It's understandable, of course, to feel down when things are tough and to feel as if our efforts aren't worth making. Sometimes in my own life, only hindsight has shown me that I failed to act when I could have. Learning from this, rather than blaming God or anyone else, has taught me to make myself ready for the next opportunity.

This morning I heard from a woman who told me that she found an accessible place to live. When I spoke to her about options several months ago, she didn't like any of them and blamed me - and God - for not fixing the problem. She was facing going into a nursing home when her aging parents sold their home. A scary and frightening problem. But I knew that she had to take some action on her own to make it all happen or it wouldn't work. She now tells me that she did take action and is living independently of her parents for the first time in an affordable apartment.

Faith and action. If we look around us, in these tough economic times, we can see how those work hand in hand to solve so many problems, some of our own making. Facing our own need to take responsibility as well as asking God for help may lead us to solutions we never dreamed of.

Saturday, December 13, 2008

Lawsuit alleges bullying of student with ADD at elite girls school

A student at Miss Porter's School and her parents are suing over bullying in class, at school dances and in the dorms.

According to the lawsuit, Bass was on the honor roll, played sports and was elected by her peers to a top position in student government before her trouble began earlier this year. As activities director, she proposed holding the senior prom with other schools nearby.

A clique self-named "Oprichniki" allegedly bullied Tatum Bass for months and it is alleged that other students called her "retarded". Bass has ADD.

Bass said in the suit that the girls turned on her, calling her "stupid" and peppering her with profanity and insults. She said she was bullied in front of hundreds of people at a school dance, in classes, around campus, in text messages and online on the Facebook social networking site.

"This was the first time that negative attention was drawn to her disability at (the school)," the lawsuit said. "Oprichniki members were at the forefront of taunting Tatum in class and advising others about her disability." via

The school issued a statement "that the lawsuit's claims "as portrayed in the media will be defended vigorously, and we believe that a comprehensive hearing of the facts will result in the exoneration of our school."

Baby it's cold outside!

And these days, lots of folks could use those extra coats we may have in our closets.

Go to One Warm Coat to see how you can help. Or check out the video below to find out information. One Warm Coat has drop off locations across the country. Take fifteen minutes to declutter your closet and donate a coat if you can.

Friday, December 12, 2008

Jan Kemp, who exposed academic abuse for athletes, dies

Jan Kemp, who exposed fraud in athletes' grades at the University of Georgia back in the '80's, has passed away at the age of 59 due to complications of Alzheimer's. After being dismissed for complaining that the school allowed nine football players to remain eligible for he 1982 Sugar Bowl game by "passing" a remedial English course which they'd failed, Kemp filed a lawsuit and ultimately won. She was reinstated and awarded over a million dollars (initially 2.5 million that was reduced). A report confirmed a pattern of academic abuse for student athletes.

Dr. Kemp stated a month after the trial that “All over the country, athletes are used to produce revenue. I’ve seen what happens when the lights dim and the crowd fades. They’re left with nothing. I want that stopped.”


Heroism of Jan Kemp changed face of college football

Before she shed light in the early 1980s on Georgia's preferential treatment for academically unprepared athletes (including grade changes in remedial courses), there was no such thing as national academic standards for freshman eligibility. There were no academic reporting forms documenting what kind of students schools were bringing in to play sports, or how many graduated, or how many maintained satisfactory progress toward a degree. There were no major financial commitments to helping jocks succeed in the classroom -- no state-of-the-art academic centers, and very few fully funded academic support staffs.

If schools didn't care whether their athletes got an education, nobody was there to call them on it. Until Kemp did.

College Athletes Guided toward Major in Eligibility

Graduation Gap for blacks, whites widen as bowl-team rates rise

Graduation rates for athletes reach record level of 79%

Trying to Put the 'Dumb Jock Myth' to Rest

It's Not an Adventure, It's a Job

Vatican issues instructions on bioethics

The Vatican issued its most authoritative document in 20 years on bioethics today.

The 32-page instruction, titled “Dignitas Personae,” or the Dignity of the Person, was issued by the Congregation for the Doctrine of the Faith, the Vatican’s doctrinal watchdog, and has the approval of Pope Benedict XVI. It was developed to provide moral responses to bioethical questions that have been raised in the 21 years since the congregation last issued instructions.

The document condemns the morning-after pill, any experimentation on embryos and the use of human biological material obtained by researchers by what it considers unethical means, such as from aborted fetuses.

But the document supports stem cell research in certain circumstances, for example when using adult cells or cells from the umbilical cord at birth, permits fertility treatments that overcome or correct pathologies and allows parents to vaccinate their children with vaccines developed using illicit cell lines, though it encourages parents to lobby healthcare authorities for alternative types of vaccines. via

The document
did not mention induced pluripotent stem cells, one method of creating embryonic-type stem cells, from adult skin cells. Bishop Lori of Connecticut explained that there would not be a moral objection to how those stem cells were obtained.

Thursday, December 11, 2008

The Palm Pistol

via its website:

What is the Palm Pistol?

The Palm Pistol is an ergonomically innovative single shot double action only defensive firearm chambered in 9mm that may be fired using either hand without regard to orientation of the stock. Suited for home defense, concealed carry or as a backup gun. It is also ideal for seniors, disabled or others who may have limited strength or manual dexterity. Using the thumb instead of the index finger for firing, it significantly reduces muzzle drift, one of the principal causes of inaccurate targeting. Point and shoot couldn't be easier.

Foxnews says it looks like a giant bean. {The computer rendering is shown above.} The barrel protrudes through the user's fingers.

Constitution Arms, who is selling the gun, has had it certified as a Class 1 medical device, which will make it reimbursable for some with a doctor's prescription. The cost will be about 300 dollars.

10 Most Fascinating Catholics of 2008

Elena over at My Domestic Church tagged me for this.

1. Fr. Michael Doyle (known as poet of poverty, serving the poor of Camden)
2. Placido Domingo
3. Bishop Fran Malooly, 9th bishop of Wilmington DE (who is described after 38 years of serving as a priest and bishop as "serving with joy" by so many)
4. Rev. Gilbert Sales (a Philippine priest who ministered to homeless in Mongolia, bringing food underground through manholes and is now on the Board of Trustees for a university )
5. Fr. Dan Schuh (who recently passed away after continuing to minister and serve as pastor with ALS)
6. Armand Carpentier, ministering to young adults at Holy Family Parish after his own long spiritual journey
7. Norman C. Francis, longest tenured US college president, Xavier University of Louisiana, the first historically black Catholic university in the western hemisphere
8. Rocco Palmo, blogger at Whispers in the Loggia ,author of Almost Holy, Catholic commentator
9. Susan Sarandon
10. Stephen Colbert

I tag Meredith
Sarah and

Wednesday, December 10, 2008

Police identify wheelchair user run over on NY road

[photo via]

A man run over and killed while riding his motorized wheelchair along the shoulder of a Long Island road has been identified.

Police say 51-year-old veteran Ranford Beckford was a Coram (KOR'-uhm) resident. They say he died in his hometown Sunday morning after being rammed from behind by a drunken driver who didn't bother to stop.

A 24 year old female driver, Lauren Dean, apprehended a few miles away, has pled not guilty to driving with a suspended license, leaving the scene of an accident and driving while intoxicated. She told police she thought she hit a curb.

[visual description: A male police officer takes a picture of a smashed blue power chair with an American flag on the back while a female police officer appears to write down notes on a highway. A light covering of snow is visible on the sides of the road.]

Charting the Christmas star

An astronomer who charted the Christmas star says that Jesus was born on June 17, not December 25. He found a spectacular astronomical event in June, which he says supports the Christmas star followed by the 3 Wise men.

Mr Reneke, formerly the chief lecturer at the Port Macquarie Observatory in New South Wales, added: "December is an arbitrary date we have accepted but it doesn't really mean that is when it happened.

"This is not an attempt to decry religion. It's really backing it up as it shows there really was a bright object appearing in the East at the right time.

"Often when we mix science with religion in this kind of forum, it can upset people. In this case, I think this could serve to reinforce people's faith."

Death by assisted suicide to be aired in UK

A British television channel said Wednesday it plans to show the suicide of an American man at a Swiss clinic, a broadcast criticized as an insensitive stunt by opponents of assisted suicide.

The death of 59-year-old Craig Ewert in 2006 was scheduled to be shown Wednesday evening in a documentary on the Sky Real Lives digital channel.

Ewert had degenerative motor neuron disease and died at a clinic in Zurich run by the assisted suicide group Dignitas, with his wife Mary at his side. Assisted suicide is legal in Switzerland in some circumstances and various organizations there provide suicide services.


The parents of Daniel James, the paralyzed rugy player who committed assisted suicide, will not be charged, it was decided Tuesday. The 23 year old is reportedly the "youngest Briton" to use Dignitas.

See also Liz Carr's Dying for a disabled Role Model

The vast amount of publicity given to the pro-euthanasia lobby, however, would seem to suggest that it's the majority of us who want to book a one-way ticket to Switzerland. This unapologetic bias only serves to misrepresent millions of disabled peoples' lives.

In our society, the prevailing view of illness and disability is that they're a tragedy and thus the decision to die is often seen as entirely rational, inevitable and even brave. Rarely is this status quo challenged but instead the majority of press reports reinforce it. We are forever hearing about the campaign to assist people to die with dignity, for example, but what about the equally compelling campaign to assist people to live with dignity? Balanced media coverage of this issue is not just essential, it's a matter of life and death.

I couldn't agree more that the highly publicized cases serve to support assumptions and myths that living with a disability is a "half life", a "punishment" or a fate worse than death. Rubbish. There are so many of us living with disability who don't feel that way - and yet, as Liz writes, our stories are not heard and certainly not represented in the media. Nor is attention being paid to the very real needs of those who want to live with disability. And that is something I've blogged about often and will continue to.

Tuesday, December 9, 2008

Lunch in the hash marks

During my lunch hour I went out to pick up a warmer winter coat. Turns out the one I have is too difficult to get on by myself, so I needed one with velcro and more room to shrug into so I can get it on by myself.

I came out of the store and a car was parked in the hash marks next to my van. I assumed at first that the car was empty and had a handicap placard, and was going to call the police. But - alas!- I'm never done being surprised by what those who park illegally in handicap spots do as side shows.

The car not only had no placard, it was not only in the hash marks, but the driver was eating lunch.

I rolled over and explained that I needed her to move her car so I could deploy my ramp.

"I'm almost done with my lunch," she said.

I explained that I had a ramp, but I couldn't lower it with her car that close. I said "It comes down and out. It's seven feet long. And that's why parking in these spots is against the law without a permit, because then people like myself can't get in and out when I need to. In the cold."

"Ooooh," she said. "I'll move right away. Sorry."

And she pulled out. And I got in.

By the way, the handicap sign right in front of where she was illegally parked had a sign donated by a local store spelling out the fines and penalties, etc. and asking people not to use the spots without a permit. Not nearly as effective, however, as a shivering quad in 3D.

Monday, December 8, 2008

Food for thought: : disability friendly service

My friend Sue didn't hesitate when asked where to go eat last night. She chose a restaurant we've been to before and based on the reception we got, I figured out that she goes there frequently. And it's easy to see why.

The person who sat us found a table where all of us could be comfortable, with lots of room, guide dog and wheelchair included. Waiters listened to the few things we needed and responded. A straw. A knife to make it easier to cut up food.

So I wasn't surprised, as the restaurant was emptying, to see another patron with a disability leaving on a Segway.

I know that I choose where to go as a consumer based on how disability friendly the service is - or not. I make decisions based on whether the parking is adequate, the restrooms are accessible, and the service meets my needs and I eliminate places where there's too much of a hassle.

If there isn't disability friendly service, I usually don't go back. Food for thought when you multiply our numbers as consumers.

Sunday, December 7, 2008

Joe the Author

Upon hearing that Joe the Plumber has a book deal, a NY Times guest columnist wrote about how unfair it is:

Most of the writers I know work every day, in obscurity and close to poverty, trying to say one thing well and true. Day in, day out, they labor to find their voice, to learn their trade, to understand nuance and pace. And then, facing a sea of rejections, they hear about something like Barbara Bush’s dog getting a book deal.

Writing is hard, even for the best wordsmiths. Ernest Hemingway said the most frightening thing he ever encountered was “a blank sheet of paper.” And Winston Churchill called the act of writing a book “a horrible, exhaustive struggle, like a long bout of painful illness.”

Yes I know this because I know authors.

m watching a number of my friends, both with and without disabilities, losing their jobs. That's not fair either. Sometimes it's about working in the wrong place at the wrong time, as I read this morning and yet - the personal devastation runs deep.

And then I found this original song, that talks about having a change of heart. And God. And mercy. So I decided to post it.

The lyrics via YouTube-
Oh, when you look back, do you smile on all that or have, or do you cry, cry out in pain cause it's not what you thought it would be?

Oh life's not fair
when you try to win everything by hand
Oh life's not fair, but I will be there
when you change your mind.

So, when you look on all your old burned pictures of God, then do you still think that the steriotype fits with the mercy He's shown you? He's always known you by name.

When everything feels like nothing is safe, you can call me and I'll change your heart. Hold still for a moment and hold your soul open and let me love you.

Saturday, December 6, 2008

Nothing in life is to be feared...

It is only to be understood.

I saw this quote by Marie Curie on google this morning, as I fielded my way through stacks of work. Not sure I would get to blog today, but here I am. And I've been thinking about this quote today as it applies to disability.

Yesterday I ran into a woman who pointed at my drink aide (a drink holder with a long straw attached to the side of my power chair, pictured) and asked "What's that?" This happens from time to time, whether it's a question about equipment or my disability.

I explained what it was.

"Oh," she said. "It looked scary, but not now that I know what it is."

I was reading a disability blog this week over at Disaboom about how a kid with a disability handled questions. (I can't remember which blog-if anyone knows, please let me know in the comments, thanks.) The blogger pointed out that answering questions about a disability can make others more comfortable and alleviate fear, but then criticized people with disabilities who won't answer questions, indicating they shouldn't complain if they aren't accepted, which was going a bit too far I thought.

Because I ran into another guy, who chuckled as he noticed I had cat hair on my pants. "Let me guess," he said. "You have a pet."

I chuckled too and told him about my long haired part Persian cat.

From my point of view, it's so refreshing when I meet a stranger who doesn't talk about the disability.

I mean it can get old, especially if you're out trying to concentrate on other things, to have to deal with disability questions. That's why I'm very reluctant to place an expectation on people with disabilities like that, because it can easily become a question of blaming the person with a disability for others' discomfort. Again. Which has been done too much. And it really underestimates peoples' ability to converse about other topics. Like cats. Or movies. Or - whatever.

On the other hand, for me personally, if I don't find a question too intrusive, I'll generally answer it because I agree that understanding things generally diminishes fear and it only takes a few minutes.

But I'd rather talk about pets, no doubt about it.

Friday, December 5, 2008

The Amazing Wheelchair Race

I'm not a big proponent of those events where they simulate disabilities for a half hour or whatever, for a number of reasons. But this YouTube video was kind of interesting.

It shows a group of able bodied friends using a wheelchair to race through a house to see who can go fastest and/or match the time of the wheelchair user. Every person had a different reaction - one guy didn't finish after falling down, for example, while another was determined to beat the time. Although it's important to keep in mind that the experience of using a wheelchair every day is much different than these one time attempts, I think the video is useful for remembering one thing: when people assume how hard it is to live with a disability, sometimes that assumption is based on the perception of a person new to the experience and equipment.

On the other hand, this video also shows how barriers in the environment are the main reason getting around is tough.

Tis the season for red and green duct tape

I was hoping that the lifetime of my manual chair would be stretched out longer by using a power chair, i.e. taking into account I was using my manual chair less, but alas! my manual chair has decided to start falling apart. Literally.

I can tell when wheelchairs are going down for the last count in my house. I start with the minor repairs, then go for using duct tape when that no longer works, then add a second color of duct tape, etc. I'm keeping my sense of humor and doing a red and green Christmas theme.

No worries. I'm sure that I'll find a nice used wheelchair somewhere that has a bit of life left on it. But it's a lesson that tempus fugit with wheelchairs whether you're sitting in them or not. I guess.

In the meantime, if you hear a pop, that would be my duct tape snapping. My plan is to sing Christmas carols in synch with the sound effects. And here's a link abut making a Christmas tree ornament out of duct tape.

Thursday, December 4, 2008

Parent who confronts illegal parker in for a surprise

You know how people who park illegally in handicap spots react badly when confronted (if any of you still do that rather than call police)?

One parent who confronted an illegal parker outside his kids' school is claiming he was told "Just because you have a hard life doesn't mean the world owes you everything."

Nothing out of the ordinary there, hearing those words from an illegal parker. Kind of a typical attitude in my experience from those who cheat to take spaces without a permit.

But get this: the illegal parker was a special ed director.

A hat tip to Media dis&dat, where you can read the rest.

What (accessible) minivans look like in other countries

My friend mentioned to me last night that minivans available in other countries now come with one door and offer various accessible options. So we went looking to see how much smaller minivans (or microvans and micro SUV's) are and found this video.

There are a lot of them. None available in the U.S. She mentioned that if the driver's seat wasn't on the wrong side, she'd be tempted to import one of them. Here's one accessibility option but if you go to YouTube and search Toyota Porte, you can find others:

The global auto industry is addressing consumer concerns about fuel consumption. As the Senate holds hearings on the Big Three auto situation, it behooves us all to question when vehicles like this will become available here.

Free wireless broadband across the US....

..will be subject to a vote by the FCC on December 18th. The plan would provide for free access across the country, with providers selling higher levels of coverage.

Wednesday, December 3, 2008

Advocates cite lack of transparency in change to Medicare drug payment for brand names

A change that may affect more than 1,000,000 people on Medicare purchasing brand name rather than generic drugs is being criticized by advocates and a letter was sent to Medicare asking them to "halt the marketing of plans that require the extra charge". If that isn't done, they want the web site changed to reflect how much those enrolled in plans would pay.

More than 1 million people in the Medicare drug program next year will pay almost the full price for certain brand-name drugs when they choose them over generics — a move that advocates for patients say is not clearly spelled out by the government nor insurers.

For hundreds of targeted drugs, patients will pay a standard co-payment. They also will pay the difference in price between the brand- name medicine and the generic. The practice in Medicare mirrors similar efforts in job-based insurance.

Medicare says about 10% of insurers will use the extra charge next year.
Jeffrey Kelman, a chief medical officer for Medicare, says enrollees have not complained about the extra fees, which don't apply to patients eligible for the low-income subsidy. Doctors can seek an exception to the charges for patients who can't take generics for medical reasons. He says Medicare is working on a "fix" for the website.

RIP Odetta

Just heard that Odetta passed away. The American folk music legend died yesterday at the age of 77 due to heart disease.

from the associated press:
In spite of failing health that caused her to use a wheelchair, Odetta performed 60 concerts in the last two years, singing for 90 minutes at a time. Her singing ability never diminished, Yeager said.

"The power would just come out of her like people wouldn't believe," he said.

With her booming, classically trained voice and spare guitar, Odetta gave life to the songs by workingmen and slaves, farmers and miners, housewives and washerwomen, blacks and whites.

First coming to prominence in the 1950s, she influenced Harry Belafonte, Bob Dylan, Joan Baez and other singers who had roots in the folk music boom.

She considered herself a musical historian rather than a folk singer, saying in an interview with the Washington Post that "humans developed music and dance because of fear, "fear of God, fear that the sun would not come back, many things. I think it developed as a way of worship or to appease something. ... The world hasn't improved, and so there's always something to sing about."

She is remembered by many as a civil rights beacon, with her August 1963 performance of O Freedom in the Washington march.

Rosa Parks, the woman who launched the boycott of segregated buses in Montgomery, Alabama, was once asked which songs meant the most to her. "All the songs Odetta sings," was Parks' reply.

A video about the March on Washington is shown below.

For Odetta and many other survivors of the Civil Rights Movement, the election of Barack Obama as president signaled a fulfilling chapter in the struggle. As she sank toward death in New York City, Odetta had an Obama poster taped on the wall across from her bed. Hospitalized with kidney failure on Monday, she kept willing herself to live because, her manager Doug Yeager wrote on a fansite just before her death, "Odetta believes she is going to sing at Obama's inauguration and I believe that is the reason she is still alive." via

Tuesday, December 2, 2008

A fetching robot

El-E is five feet tall, designed to learn from its mistakes, fetches items and is modeled after assistive guide dogs to help those with disabilities live more independently. El-E is also a robot. And with its laser pointing system, some Star Wars fans might find it to be as cool as useful.

Charlie Kemp, who designed the robot, has made efforts to make it interactive and "somehwat anthropomorphic". Robots like this may be available in ten years to assist as home health care aides, depending on funding. They can do limited tasks such as fetching, bringing pills or other items. They can also open doors.

There is still significant research to be done in order to make robots like El-E function in real homes on a daily basis," Kemp said. "Real homes contain a diverse array of objects, have obstacles that make robot navigation difficult, have varied lighting, contain fragile items, provide shelter to pets and family members, and have messy areas."

Kemp has been working for more than a year with Jonathan Glass, a neurology professor at Emory University in Atlanta and director of the Emory ALS Center. via

You can also visit Charlie Kemp's home page for more information and to see a picture of the robot. In the video below, you can watch El-E open a door.

El-E was also featured on Engadget with a cool shot of its laser at work. More pix at Gearlog.

Psalm 139, Alzheimer's version

I found this poem in Banner, sent via the NJCIM list serv. It begins:

Listen, Dad,
God sees you, he knows what’s happened,
he knows you.
He knows when you sit and when you sleep.
He knows your tangled thoughts; he knows them straight.

please click above to read the rest...

and while you're over there, check out the article Church Life on Wheels and a new book dealing with inclusion of people with disabilities in church.

Monday, December 1, 2008

My viability rating varies

Because I live in an able bodied world, I know that I have a viability rating.

I know that because I see people approve of assisted suicide for those with disabilities, who think they are no longer viable. And because I see and hear acquaintances give periodic reports on how I'm doing.

They say things ranging from "You should be as independent as possible" to "You're so independent, but you like it that way". Such comments have led me to a place of Zen consciousness where I make no decisions based on such casual feedback. At times it's like an Olympic spoof, where people hold up signs with scores from 10 to 1. Images like that make me smile on a good day.

Viable is defined by Merriam-Webster as "1. capable of living"; "2. capable of growing or developing"; and "3. a: capable of working, functioning, or developing adequately <viable alternatives> b: capable of existence and development as an independent unit viable state> c (1): having a reasonable chance of succeeding; (2): financially sustainable.

Breaking this all down in terms of disability is a fascinating project. You have your viable states, in which you are adjudged to be capable - or not- of existing and/or developing independently. I clearly don't qualify for that, since getting something to eat by myself involves help, as I told a friend last night who watched me (i.e. gravity) drop salad onto a plate, amazed at "how much better I was". I explained that gravity and Meredith did the work, that one shouldn't assume that meals pop out of my refrigerator ready to eat, cut up and placed on plates, bowls, trays etc. that I can manage. (Had she arrived earlier when the groceries were delivered, she would have seen how useless all of that is to me until someone able bodied gets the food out of the bags, cuts it up, etc. and at that point I suppose I would have been seen as not being in a viable state.)

It is defintion c(1) that is most amusing to me sometimes, that of having a reasonable chance of succeeding. Now that I have an accessible van, when people ask me if I need help getting into my car, I say no rather confidently, knowing I can manage with the help of assistive technology by myself. Yet getting a dollar bill out - or any task requiring dexterity- can take much longer or be impossible for me to succeed at. And this is what's amusing- is that when assistive technology isn't the answer and human help is needed, I get a low viability score. It's not quite fair, is it, that the 2.0 card is held up when they simply haven't invented a wallet that shoots out dollar bills via voice command?

I could go on and on about how being seen as not being financially sustainable is another problem for those of us with disabilities with staggering unemployment statistics or how ironic it is that the word viable, which comes from the French word vie (life), is applied in a way that denigrates the value of our lives .

We need new definitions for the word viable, ones which don't start with the word "capable". Those put a "cap" on how our abilities are defined, limiting us to the norms of the able bodied world. They lead to terms like "handicapable", where we buy into the idea that any human being has to somehow prove his or her worth. That robs people of their dignity, labels them, scores their performance - or lack of - on a playing field that not only isn't level, but may be one they can't even get on.

I'm no less capable at what I do just because I'm physically dependent on someone else to turn a page so ultimately I can complete my work product. Yet to define a person as being in a viable state only when capable of existing and developing as an independent unit - sends quite the opposite message.

Sometimes after an inane conversation with someone about my level of independence as a person with quadriplegia, I find myself barely able to stop giggling. I'm not proud of that, mind you, because I realize that if you don't live with my disability, part of being viable has not included developing a sense of humor about how our society defines independence. Until we all can laugh at that and embrace the diversity that the experiences of the disability community bring to our world, I just have to accept that my viability rating will continue to go up and down in each and every encounter.

Canes in the dollar store

I was in a dollar store for the first time in a very long time this weekend. I'm still fonder of the old five and dimes, possibly because ours had a counter with ice cream sundaes and grilled cheese sandwiches available for the asking.

But dollar stores are fun. Usually the aisles are pretty narrow, but this store had wide aisles so I decided to wander through. And that's when I saw this large open barrel containing at least fifty canes.

Some of them were made of hard plastic while others were wood. Most of them were brown - dark, light, in between. The handles were carved on some, while others had knobs.

I found myself sitting there staring at those canes. Maybe I just couldn't get over the fact that an assistive device of any kind could be bought for a buck. It made me think about how baby boomers will help bring this and that about disability more into the normative experience.

An elderly couple passed by. The wife picked up and fingered a cane. The husband grumbled when she suggested he think about using one. "Don't need one of those."

She put the cane back into the barrel, looked at me and said "Stubborn." She waited until he walked away. (I could see why she was concerned - he was having difficulty navigating the aisle.) Then she picked up a cane, put it in her cart and followed him.

"Oh stop it!" I heard her say a few minutes later. "It's for me, then. You can just borrow it."

Yes, buying a cane at a dollar store is cheaper. But the stigma attached to it, apparently, has retained its value.

12/1 is World AIDS Day

Facing AIDS - World AIDS day 2008
For ways to take action or to blog about today, click here.

For more materials and information, please go here.

For a video with a message from the Wat Opot community, see below.