Text to speech feature on Kindle 2 limited - in many ways

My friend Steve over at Planet of the Blind posted about the inaccessibility of the Kindle 2 today.


And now news comes from Pitt Rehab that Amazon has caved on the text to speech feature, allowing permission for individual book titles to be withdrawn for its use.

Never mind that, for some, this is the use for which they bought the Kindle 2 on good faith and the only way some can read. What about Amazon's responsibilities toward readers with disabilities who planned to use the Kindle 2 for its text to speech features?

Shame on them.

It's chilly out there

More snow is on the way, so I decided to put up this video of a power chair user going through Central Park on a snowy day. The video is just over two minutes long, so it also illustrates how much distance a power chair can cover in that time.



Yesterday I was at a meeting in a room where there was a center table, chairs around it and then more chairs around the perimeter of the room. My wheelchair has a drink-aide attached to it, as shown in the photo. It's a large water bottle with a long straw which permits me to stay hydrated independently and it sticks out somewhat as you can see in the photo.


A woman entered the room, walked behind me and then complained to me about my drink-aide being "in her way" and added that she "was going to say something even if no one else did".

I'm well used to the "in the way" comments and whenever I hear these words, a part of me thinks "whatever", probably because I'm in a 200 pound power chair that is anything but easy to park in rooms designed for people sitting in chairs. But I didn't say that. In fact, I didn't say anything. I'm tired this week and waiting for a gadget to come that will help relieve that but with shipping costs what they are, it feels like it's coming by pony express. In the meantime I am quite exhausted so I didn't point out that she was the only person who chose to walk behind me when the rest of the room had plenty of clearance and people seemed to understand that, with the furniture layout, there was no "good spot" for me to park my wheelchair where I'd be out of the way. Nor did I explain the medical reason for the drink-aide and why I need it.

In any event, I said nothing, tired at the mere thought of explaining any or all of this.

She then said "Anyway, I'll just move this", touching the straw on my assistive device with her germy hands, "and - can you reach it there?" she asked as she placed the straw behind me on the opposite side of where I can access it and passed by.

"Doesn't matter," I said. "You see, once someone touches the straw, it needs to be cleaned from their germs because I - well - drink out of it."

It's just not okay to touch peoples' assistive devices without asking. And I really hate when people take physical advantage of my disability by doing things like that.

I also get rather annoyed when people do things to cause work (that I can't do) on days when I don't have help scheduled to come over afterwards because then I have to go around asking for help from people (or paying for help) for things that could have been avoided in the first place.

As for whether I was right or not in not responding to her, I will say that normally I do say something when someone talks to me. I can understand that may appear rude if I don't respond to what someone says. Nevertheless, a statement that I'm in the way and that my assistive devices are a problem for everyone, but they're all being polite about it, is a bit difficult to handle on two hours of sleep.

Bishop's apology falls short, says the Vatican

The Vatican says Bishop Williamson's statement does not meet the conditions set by the Vatican on February 4, "when it ordered Williamson to "in an absolutely unequivocal and public way distance himself from his positions" regarding the Holocaust."

Instead, Williamson issued a statement yesterday saying, in part, "To all souls that took honest scandal from what I said, before God I apologize."

The bishop has stated he believes there were no gas chambers during the Holocaust and that no more than 300,000 people perished, rather than 6 million as recorded by historians. His statement did not say his views were erroneous or that he did not believe them.

The Vatican indicated that the statement did not meet the conditions for Williamson to be a member of the Catholic clergy.

And for a most delightful ending.....

As Meredith finishes up her book, eking out the last of her inspiration (and perspiration), I found this delightful short animation called The Danish Poet that won an Oscar in 2007. It's narrated by Liv Ullmann. From You Tube:

...we follow Kasper, a poet whose creative well has run dry, on a holiday to Norway to meet the famous writer, Sigrid Undset. As Kasper's quest for inspiration unfolds, it appears that a spell of bad weather, an angry dog, slippery barn planks, a careless postman, hungry goats and other seemingly unrelated factors might play important roles in the big scheme of things after all.

If you 've never been around an author finishing up a book, perhaps you'll enjoy the film for its clever animation and delightful humor. If you have - or if you are a writer, you'll thoroughly enjoy the message that those who think their creative well has run dry are oh so wrong :)

Assume Nothing

Last night a friend who is a nurse kindly stopped by with supplies of a sort for the latest gadget du jour which will allow me to live independently as a quad. I know that years ago I would have been upset by having to make these changes, but not so much now.

I've learned to assume nothing when it comes to quadriplegia. And before anyone thinks that means I've "given in" or "given up", let me say that assuming nothing runs both ways. Not only am I more willing to make changes quicker when things go south due to (gasp) aging, but I've also learned that I shouldn't assume that things won't/can't get better. It's a two way street.

Usually when I introduce another gadget into my life I find that my quality of life increases dramatically. But every time this happens, some things need to be dealt with and I've found this list helpful.

1. It's not just a change for me, it's a change for everyone around me which leads to number
2. I need to discern and then monitor when/if/how/with whom this change should be shared;
3. I need to readjust my budget if necessary for the cost of the item, supplies, etc.
4. Make a step by step list of how you will get the gadget, how you will learn to use the gadget and where/when/how you will use it in your daily life
5. Check your spiritual reaction. Continue being of service to others.

In this case, I am happy to report that the cost is not as high as for many others, but if anyone else is new to dealing with a disability that costs a lot, number three has to be reckoned with so I added it. Believe me, it's a lot easier to get rid of cable to make a monthly payment in month 1 than to realize in month 13 that you should have done that in month 1.

As for the relationship issues, that is more difficult. People being people, all of them react differently to change and so you need to figure out when to tell some people who aren't good with change so that their overreaction doesn't impact your adjustment. Who needs someone screaming "the sky is falling" as you're trying to wrap your brain around a new way to go about your daily life? Not moi. There are also groups of people you just may choose not to tell. Ever.

As for number four, the step by step list comes in handy when it's a gadget I really don't want, like this one. (And no, sorry, blog readers don't fall in the category of knowing with this one.) Having a list keeps me from procrastinating or, worse yet, refusing to learn about the device and letting it sit useless. The less I want a gadget, the more precise I make my list. After all, there's no sense having others (and myself) investing time and money into something that I'm not going to use.

As for number five, as usual, God is good to me because it's a great liturgical season for change. It is now Lent and the gadget is about to arrive. This is not a time of the liturgical year where whining is acceptable or encouraged. Besides, during Lent, a number of Catholics are grumpy, so maybe I can fly under the radar for a few days.

And I pray that God will give me the wisdom to remain grateful (for this gadget) and patience (for those days when learning to use it may not go so smoothly) and continue to show me ways I can be of service to others.

As we all enter into Lent, I offer this prayer:

God, heavenly Father,
look upon me and hear my prayer
during this holy Season of Lent.
By the good works You inspire,
help me to discipline my body
and to be renewed in spirit.

Without You I can do nothing.
By Your Spirit help me to know what is right
and to be eager in doing Your will.
...

Fill my heart with Your love
and keep me faithful to the Gospel of Christ.
Give me the grace to rise above my human weakness.
Give me new life by Your Sacraments, especially the Mass.

[for the entire prayer, click here]

Catholic parishes hold programs for children with disabilities

USA Today reports that St. Peter's Roman Catholic Church in Warwick, Rhode Island has begun a program of religious education for children with autism, the first in Rhode Island. The bimonthly program also helps children prepare for the sacraments.

The article explains how a parishioner at St. Peter's coordinated the program when she realized the need to include children with disabilities, by consulting with experts and recruiting volunteers.


Dioceses in at least 31 states offer specialized religious instruction for students suffering from conditions including autism, mental retardation, emotional and learning disabilities and brain injuries, according to a 2007-2008 survey by the U.S. Conference of Catholic Bishops.

Because he loved words

"I want to highlight the creativity within the brain of a cripple and, while not attempting to hide his crippledom, I want instead to filter all sob-storied sentiment from his portrait and dwell upon his life, his laughter, his vision and his nervous normality."
Christopher Nolan, Irish poet and writer 1965-2009

43 year old Christopher Nolan, who had cerebral palsy, died on Saturday after choking on a piece of food on Friday at Beaumont Hospital in Dublin. He was the winner of the Whitbread Award in 1988 for his autobiography "Under the Eye of the Clock: The Life Story of Christopher Nolan", which he refused to allow to be made into a movie "on the grounds that the production would be a sympathy piece, according to the Irish Independent." *

His family issued a statement that Nolan became a writer because he loved words. It was not a sentimental statement, and Christy would have loved that.

[image description: Christopher Nolan is shown in a headshot taken when he was approximately 15 years old, wearing a blue collared shirt.]



*Nolan also wrote Damburst of Dreams, The Banyan Tree and an adaptation of his writings called "Torchlight and Laser Beams" was produced in Dublin in 1988. He received an Honorary Doctorate of Letters in the UK and the medal of excellence from the United Nations Society of Writers and a Person of the Year award in Ireland in 1988.

Kindle 2 fails accessibility test

according to the one review I saw on its accessibility features for those with disabilities.

There is a petition asking amazon to make the Kindle 2 fully accessible.

To be fair,

1. I wrote to the Kindle Team at amazon about a demo so I could review the Kindle 2, but that didn't happen.

2. If anyone else knows of any reviews of the accessibility features, please leave them in the comments.

3. If anyone with a disability actually owns and has used a Kindle 2, please leave some feedback in the comments. Please note, however, that anonymous comments are often moderated out by me on products because it's so easy to 'plant' a positive comment.

Of course there are lots of reviews by people that don't really address the concerns we may have about the Kindle 2 features.

Another one right here.

UPDATE: Tim O'Brien, a legally blind photographer, has posted about the first Kindle and hopes to review the Kindle 2.

AccessAbility writes about Kindle's legal battle with the Author's Guild about the text to speech features on the Kindle 2

The Authors Guild argues that the reading of a book out loud by a machine is a copyright infringement unless the copyright holder has specifically granted permission for the book to be read aloud.

The National Federation of the Blind responds:

... blind people routinely use readers, either human or machine, to access books that are not available in alternative formats like Braille or audio. Up until now, no one has argued that this is illegal, but now the Authors Guild says that it is. This is absolutely wrong. The blind and other readers have the right for books to be presented to us in the format that is most useful to us, and we are not violating copyright law as long as we use readers, either human or machine, for private rather than public listening. The key point is that reading aloud in private is the same whether done by a person or a machine, and reading aloud in private is never an infringement of copyright.

Failure to launch

$273 million dollars. That's the cost of a project which launched a satellite into space this morning to study the effect of greenhouse gas. But the payload fairing failed to separate from the rocket. So three minutes after the launch, the satellite fell into the Antarctic Ocean. There's going to be an investigation.

Back on earth and more particularly in the US, there are a growing number of child caregivers.

A 2005 nationwide study suggested that about 3 percent of households with children ages 8 to 18 included child caregivers. Experts say they expect the numbers to grow as chronically ill patients leave hospitals sooner and live longer, the recession compels patients to forgo paid help and veterans need home care.

The article states that Britain and Australia count children in these roles in their census and provide many with resources, such as "patient-care discussions" and show them how "to ask agencies for help or compensation."

In the US, experts say, it is generally a hidden issue. This is added to by the difficulties children find with talking about what's going on at school or to anyone, coupled by the embarrassment adults have with admitting - or realizing- how much they are depending on a child caregiver. Although some children can handle the role, it depends on how much they are asked to do and the child's resources and age.

Another kind of failure to launch, but one that takes its toll more quietly. There is a timely post on this subject, Unfair Burdens, over at Shakesville and the comments to it show the toll child caregiving has taken on some children who are now adults.

Related: 1 million US children are caregivers

State by state listing of caregiver resources

Children as Caregivers by LeAne Austin, RN (This article outlines not only the effect on children who are caregivers, but ways to handle the family situation openly, written by a 39 year old mother who had a stroke)

How long does it take to get a wheelchair accessible taxi?

In Las Vegas, this man calls at 1:37 p.m. for a wheelchair accessible taxi and is told to call back every ten minutes. After over two and a half hours, he's told a cab will be sent, but then told that cab will be delayed.

Parents protest children's show host who has disability

A disabled CBeebies presenter has been the victim of a disturbing campaign after parents complained that she was scaring toddlers.

They claimed that host Cerrie Burnell - who was born with one arm - is not suitable to appear on the digital children's channel.

According to this article, the decision to hire Cerrie Burnell (shown in the photo at left), who was born with one arm, to take over the Do and Discover and The Bedtime Hour program has resulted in complaints and online comments from parents so vicious that some have had to be removed from the CBeebies website. Miss Burnell studied drama, has performing experience and also works as a teaching assistant at a special needs school.

Disability groups have fiercely defended her and the BBC.

John Knight, of charity Leonard Cheshire Disability, said: 'Disabled people experience disadvantage and discrimination like this every day, largely through ignorance. This needs to change.

'Understanding disability all comes down to familiarity. The bottom line is that seeing disabled people on television should be the norm, not the exception.'

Update: BBC: How Do You Explain a Missing Arm to a Child?

Things Heard From A Wheelchair & Assumptions About Disability

Dave writes a beautiful post about how loving parents challenge their son's assumption that a person in a wheelchair must be sad. Dave is not sad.

A friend, tells me she overheard a young boy ask his mom what "was wrong with her" and his mother said "She was in an accident". My friend has been disabled from birth.

"We are giving these people too much money if they can afford Starbucks," a woman said as my friend, who is a wheelchair user, went through the line. My friend works as a physician.

There is only one way to be blind, some people think in Iowa, interfering with a blind woman's right to mobility with her guide dog because they think a cane is the 'correct way' for blind people to get around.

Transcripts are the same as closed captioning for HOH and Deaf people, the government believes over at change.gov Transcripts are worthless. A speech, an address, a video appeal to the American People is not meant to be an article or the written word. They are different formats. A transcript is devoid of a good 45% of meaning for Deaf people. We rely as heavily on facial expressions and the pacing of words as most people rely on tone of voice. We read a person’s face as we read the closed captioning, alternating between lipreading and text. Between your words and your expressions.

Jerry Lewis Oscar award protest

Radar ran an article and photo of the protest by disability rights activists about Jerry Lewis receiving the Jean Hersholt Humanitarian Award this Sunday at the Oscars.
Why the protest?

via Tell Oscar- NO humanitarian award for Jerry Lewis! on Facebook:

During his decades of hosting the Labor Day Telethon, Jerry Lewis has helped to perpetuate negative, stereotypical attitudes toward people with muscular dystrophy and other disabilities. Jerry Lewis and the Telethon actively promote pity as a fundraising strategy. Disabled people want RESPECT and RIGHTS, not pity and charity.
In 1990, Lewis wrote that if he had muscular dystrophy and had to use a wheelchair, he would "just have to learn to try to be good at being a half a person." During the 1992 Telethon, he said that people with MD, whom he always insists on calling "my kids," "cannot go into the workplace. There's nothing they can do." Comments like these have led disability activists and our allies to protest against Jerry Lewis, and against the Telethon. We've argued that the Telethon promotes pity, a counterproductive emotion which undermines our social equality. Here's how Lewis responded to the Telethon protesters during a 2001 television interview: "Pity? You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"
On February 22, 2009, we won't be staying in our houses watching the Academy Awards. We'll be publicly objecting to this award. We'll be defending our own humanity against this so-called "humanitarian."
For more information go to The Trouble with Jerry


There is an online petition you can sign in support of the protest.

A link to photos from the protest has been posted up at The Trouble with Jerry. You can find photos here.

You can also follow the protest on Twitter at notjerryskids

My wireless indoor/outdoor weather station

Because I have quadriplegia, my ability to sense temperature is affected. So I purchased a wireless indoor/outdoor weather station in Kohl's for $19.99 about five years ago. The items shown at left are a battery operated sensor unit you place outside (not in direct sunlight or too much shade) and a small device with a screen (called a temperature station) that you keep inside which shows both the outside and inside temperatures. This "real time" information is really helpful since the temperatures reported through weather services can vary location by location and hour by hour.

Yesterday the device outside wasn't reporting temperatures and I thought it needed a new battery, but today it's working again. I'm really impressed with its reliability and longevity.

Mine is the La Crosse Technology model. Here's a link to a similar model .

This falls into the " you're only imagining all we notice is your disability" column

Paul Harris of the UK, who recently went blind, received a letter from contractors about to do modifications on his home that began with "Dear Mr Blindman" on Wednesday. The company said his disability was "mistakenly entered on its database" and apologized.

Apparently his disability information was placed into the name column.

"I was literally horrified that they can send anything through the post saying 'Dear Mr Blindman' about your disability," said Mr Harris. "I was just so shocked.

"You wouldn't send a letter to a person who's got Down's Syndrome saying Dear Mr Down's Syndrome would you?"

via news.bbc.co.uk

A wheelchair excursion through the Upper West Side

I thoroughly enjoyed this narrated wheelchair excursion which was full of good humor and hope you do too.

3 arrested in nursing home deaths in California

The L.A. Times reports that

In an elder abuse case described by one investigator as the most outrageous he has ever seen, three former top managers at a Kern County nursing home have been arrested in the deaths of three residents who allegedly were given needless doses of psychotropic medications.

The state attorney general's office contended in a criminal complaint that more than 20 residents at a skilled nursing center run by the Kern Valley Healthcare District were drugged "for staff convenience."
...
The complaint paints a bleak picture of a facility dominated by nursing director Hughes, 55, who is accused of seeking to drug all but the most docile residents. Medical director Pormir, 48, allegedly rubber-stamped Hughes' orders for medication, failed to examine patients and was "either willfully or naively ignorant" of his proper role, according to the complaint. Pharmacist Hayes, 51, told investigators that she went along because Hughes had wide experience in psychiatric hospitals, the complaint says.

According to the article, medication was ordered for residents who "glared at" former nursing director Hughes or "spoke disrespectfully".

Announcements: Book Signing in Philadelphia

Book Signing at Borders Center City with Fr. Anthony Russo

March 11, 2009
12:30 to 1:30 PM

Borders Book Store - 2nd floor
Broad and Chestnut Streets
Philadelphia, PA 19103

Please let your friends who work in Center City know to visit Borders
on March 11th for a brief presentation and Book signing for: In Silent
Prayer: A History of Ministry with the Deaf Community in
the Archdiocese of Philadelphia

Written by Fr. Father Anthony Russo, In Silent Prayer: A History of
Ministry with the Deaf Community in the Archdiocese of Philadelphia
traces this special ministry in our local Church. Fr. Russo tells the
story of the great men and women who have provided this important
service. He also includes examples of how to establish an effective
ministry with a discussion of the ideas and attitudes necessary to
effect progress in ministry today.

via list serve NJCIM

The book can also be purchased online at this site and this site.

[image description: The cover of the book is shown, with an image from the rear of the seated congregation, with members signing and an interpreter and priest on the altar.]

GreenWheel Bike Technology

Scientists at MIT are testing a new power generation, storage and propulsion system known as the GreenWheel that will turn any pedal bicycle into an electric hog.

Just take the wheel off, put a GreenWheel equipped wheel on in its place, plug it in and it should work just fine," said Ryan Chin, one of the GreenWheel designers. "The whole thing has been designed so all the parts except the throttle are enclosed in the wheel."

From the outside, the GreenWheel has the radius of a small dinner plate and is about 2 inches thick. Inside the aluminum frame sits the three major GreenWheel components: an electric generator, batteries and an electric motor. via dsc.discovery.com

Just wondering if this technology could be used to improve current products that are available to turn manual wheelchairs into power wheelchairs - or at least bring down the cost of these devices, which can be up to five thousand dollars or more.

New to the Blogroll: Water on the Brain- and Lots on My Mind

Stephen Drake's new blog Water on the Brain - and Lots on My Mind is now up.

via the site-

Ramblings, Observations and Rants about Hydrocephalus, Nonverbal Learning Disabilities and Neurodiversity - The pictures on top of the page are of me - as a baby with a still-significantly enlarged head. I'm one of a very small group of the "first generation" of kids with hydrocephalus who were treated with surgical shunts. I'm in my sixth decade of living with an interesting neuropsych profile that matches nicely with Nonverbal Learning Disabilities (a label that didn't come into existence until the late 1980s). I learned about NLD or NVLD in the early 1990s but didn't become public about my own relationship to the label until a little over a year ago. I have good reasons for waiting this long - and to be public now.

Today's post is entitled " Vegetables".

h/t to FRIDA

Job's Comforters and the Economy

A lot of people believe that stress is always a bad thing. With so many people unemployed, there are articles and seminars talking about how to deal with stress. This article talks about how stress can sometimes be a good thing. It can energize us, mobilize us and teach us resiliency at times.

I was thinking about stress the other day when an unemployed friend of mine who thought she would get help with her COBRA payment found out she did not fall within the designated group because, apparently, she was laid off too soon. She told me how she finally wrote her congressman when she discovered this because, actually, she has been struggling even longer to make ends meet and find a job. Her response to the stress of having her hope dashed that she would get some help with the enormous cost of paying COBRA was to mobilize.

Now those who like to play the role of Job's comforters would most likely tell her and people like her that the stimulus package can't cover everyone. Maybe they would go so far as to tell her that she has had more time to find a job - never mind that it was during one of the worst economic periods of our country during which every week more people were being laid off.

What these folks fail to see is that my friend isn't looking for a handout. What my friend really wants is a job. She has worked since college and has never been laid off before. She is in a field that has been devastated by the current economic crisis, so she's realistic and has told interviewers that she will take less pay by half and work at jobs she had a decade ago. My friend uses a wheelchair and has had to make special arrangements for interviews scheduled in buildings that lack access. She's tried headhunters, temp agencies - you name it.

I know what it's like to deal with Job's comforters. Those who are Job's comforters often fail to see that bad things could happen to them. They cling, even in the face of contrary evidence, to the Just World theory where, if a person does everything right, everything will go right. And if it doesn't, they point to the person and finger wag.

I tell my friend that I'm proud of her for continuing to mobilize in reaction to stress, for speaking up about how the stimulus package affects real people who are part of the unemployment crisis.

eGuiders

I just found out about a site that opened today, called eGuiders. It searches for the best videos online in different genres and its site claims it

shows great original online videos recommended by great entertainment professionals. Every minute, 10 hours of video is uploaded to YouTube alone. We cut through the clutter and only give you the best made-for-web content.

You can read more about it here and how the team of eGuiders directs viewers to videos they may not otherwise find.

The team of eGuiders is heavily weighted to creative types, from well-known filmmakers such as John Landis (Coming to America) and Peter Sollett (Nick & Norah's Infinite Playlist) to lesser-known ones such as Meredith O'Brien of Mobile Magic Studios and John Rota of Divine Madman Productions. Other eGuiders include actors Jerry Stiller and Anne Meara and journalists such as NPR's Margo Adler.

"Some of our eGuiders are really great at finding interesting viral videos," Ostrick says. "Other people are really great at discovering quality animation films, and others are good at finding branded content." via usatoday.com

Let me know how you like it.

New to the blogroll: Best Catholic Books

I found this gem of a blog through a reader's blogroll. Best Catholic Books is written by Sr. Julia from New Orleans, whose intro reads:

I became a Catholic because of a book. And I became a nun because of a bookstore--the Daughters of St. Paul bookstore in Philadelphia. And for 30 years, I've lived in a bookstore! (It's the perfect life for a book addict like me.) If you don't have some of the books I mention here, just write to me. As I said, I live in a bookstore!

Her posts feature books that she finds which are treasures as well as those she uses herself in her prayer life. Please go over and visit.

*

I'd also like to mention that if any Catholics would like to volunteer to scan a Catholic book for Bookshare, it would be appreciated. If anyone could please do just one book, eventually that would help provide more Catholic books for readers. (Right now when you search under 'Catholic', you get eight books, although there are a few more. I found two books by Scott Hahn, for example.) Many of us Catholics with disabilities who rely on Bookshare to read would love to be able to read some of the Catholic books we see in print and it would be a great help and much appreciated.

Miya of the Quiet Strength

Miya Rodolfo-Sioson, born in the Philippines, was raised in Iowa by her mother with 3 brothers.As the lone survivor of a 1991 school shooting at the University of Iowa, Miya acquired quadriplegia. A one hour documentary entitled Miya of the Quiet Strength talks about how her views on living with a disability and some of the activist work she did for people in Central America and for people in the disability community.

This video shows a small portion of it.



Sadly Miya passed away on December 3, 2008 from cancer and is missed by her family and many friends.

You can purchase the DVD at the above link.

Blog award

Greg over at Pitt Rehab nominated me for the friends award! (Thanks so much, Greg.) And now it's my opportunity to pick Eight Blogger's to pass this award along too. The criteria is:

These blogs are exceedingly charming. These kind bloggers aim to find and be friends. They are not interested in self-aggrandizement. Our hope is that when the ribbon of these prizes are cut, even more friendships are propagated. Please give attention to these writers. Deliver this award to eight more and include this cleverly written text in the body of your awards.

1. Blue Girl

2. Planet of the Blind

3. Barriers Bridges and Books

4. Bad Cripple

5. fridawrites

6. Wheelchair Dancer

7. More Meredith Gould

8. Witticisms

There are so many great blogs out there it was very difficult to only pick 8 ! I hope you enjoy these blogs.

Valentine's Day and relationships

On this Valentine's Day Wheelchair Dancer is writing about How We Are with each other in the disability community. She concludes:

How we are with each other alternates between a sense of community and state of fear. How are with each other depends a lot on what we do with internalized disability prejudice and our own fears for our wellbeing, access to resources, and place in this world. How we are with each other is a product of our generosity and grace. How we are with each other is how we treat each other, react to each other, and touch each other. How we are with each other depends on where we are with ourselves.

She really covers a lot of topics in her post that are worth considering - for all of us- in our relationships. And she touches on many issues that I've encountered, ranging from whether we relate to each other from fear or love, in a nutshell.

Feel free to go on over and join in the discussion. Happy Valentine's Day everyone.

What can we do about the economic crisis?

There are solutions being proposed, but one of the simplest ways to help is to share what you already have.

We're all learning that acts of kindness can help in this economy.A woman with a vacant house allows someone who is homeless to stay there. A person who isn't using a piece of furniture puts it on Craigslist for free and gives it to someone who needs it. School districts work with homeless families to keep children in school.

The stories go on and on. And the really good news is that all of us can be a part of the solution. Sometimes all it takes is to go out into your garage or look around to see what you have that's unused to find an opportunity to be kind to someone else. Many of us in the disability community have exchanged equipment for years. If the item is in working order and safe, it's worth something to someone who doesn't have one at all or has a broken one.

There are many ways to pass things on that don't cost you money. Craigslist, free listings in local papers for items under fifty dollars, bulletin boards, message boards online and church and civic organizations come to mind. Word of mouth also works.

And if you need some money for the item but can pass it along at a low price, that's okay too. Put it on ebay. Have a garage sale.

Clothing is another item that can easily be washed and passed along. There are places that pick up clothing left in bags on your front porch. Here's a list of resources. Women's shelters also can use clothing. And groups of moms have been getting together for clothing exchanges for their babies and children, who rapidly outgrow lightly worn clothes. (There are even upscale clothing exchanges going on with how to's on how to use one to update your wardrobe, just in case you're worried about not being trendy.)

If you'd rather do it through an organization, head on over to a place like volunteermatch where you help with clothing exchanges for foster kids and parents.

And yes volunteering is another way to share what you have - time and energy. Give people rides. Help an unemployed neighbor by taking their kids to the movies or to the park. Sit with them and listen over a cup of coffee.

And the good news is that acts of kindness give us a perspective about our own situation. It reminds us to have gratitude for what we do have and, on those days when we may lament that we don't have something we want, that there are so many others out there who don't have what they need.

Related: Do 1 Thing for homeless teens on Valentine's Day

More suggestions on how to celebrate Valentine's Day by helping others

Service dog organization needs your help

Meet Nala.

Nala is a Susquehanna service dog that my friend Greg who blogs over at Pitt Rehab has had for almost nine years. He writes this morning about the independence she gives him and says he heard from the director of the program that their annual fundraiser is in trouble since some sponsors withdrew due to the economy. Greg asks that

if you're able to make any donation no matter how small it would do so much good for so many people. Please visit their website to make a donation ! Another way you can help is to forward this to individuals you feel would like to contribute.

[Nala, shown in the photo, is a black lab sitting in a field of grass,wearing a light purple scarf with a tag that reads Susquehanna Service Dogs. Their logo is shown, a stick figure of a person in a wheelchair with arms upraised and a black service dog beside him/her.]

Court rules vaccine not to blame for autism

Judges in the cases found the claims to be "speculative and unpersuasive"".

The ruling, which was anxiously awaited by health authorities, was a blow to families who have filed more than 5,000 claims with the U.S. Court of Claims alleging that vaccines caused autism and other neurological problems in their children. via msnbc.com

Although the court found that the measles-mumps-rubella vaccine was not to blame, it has yet to rule on "separate claims from other families who contend that rather than a single vaccine, the culprit could be a mercury-containing preservative called thimerosal that once was common in children's inoculations."

Things you can expect when you write a blog

Just reading Googling God , where he was writing about comments you can expect if you write a Catholic blog.

And let me tell you, I also get gems because I write about disability issues:

FedUp has left a new comment on your post "8 year old girl handcuffed at school":

That thing should have been euthanized before it was born. And it's parents should be shot for polluting the gene pool like that. Absolutely disgusting.

And yes I reject comments like this. Readers don't see many of the comments I get along these lines. But I'm using this one to make a point.

It's why I write about the dehumanization of people with disabilities, euthanasia and hate crimes. And the Holocaust.

Flunking Penmanship

I was one of those Catholic school kids who was left handed. The nuns set to trying to make me write with my right hand, which failed since I immediately went back to my left hand when they were out of sight. But I did learn skills that came in handy - being ambidextrous, for example. I also learned to write under my jacket so they couldn't see which hand I was using.

In my parochial elementary school, we were taught penmanship as a separate subject which you could fail. I was reminded of that quite often because not only was I left handed but my handwriting (perhaps as a result of having to switch hands) was illegible. In fact, in a desperate move to pass penmanship in fourth grade, I began to write so small that no one could read it. I recall teachers holding my marble composition book upside down and sideways and taking a magnifying glass to it prior to writing a big red F on top.

So that's the story of how I graduated from Catholic elementary school with handwriting that looked like hieroglyphics. Flunking penmanship did not hold me back in life as I feared. Of course now I can't write at all because my hands are paralyzed. It's a bit of a relief actually.

If you went to Catholic school, you probably learned to write with the method seen in the video below. Ahhh, memories.

A Dog's Life

I just received a comment from Barbara/Daisy at Furlicity. It's a creative blog if you haven't read it yet. The intro reads:

This is my journal of life after being rescued from a puppy mill. It is fondly dedicated to my heros at: http://www.fureverafter.net/ to my foster parents who started me on the road to furlicity, and to all the humans who value life in all it's forms.

***

For all the animal lovers out there, I found this video showing a cat who is trying to battle a printer and it gave me a few laughs so I thought I'd post it.

VP Biden to visit Special Olympics World Winter Games

VP Joe Biden will visit the Special Olympics World Winter Games this Thursday.
Although details haven't been released, he is expected to attend events and visit with some athletes.

Biden also will speak about the Obama administration's "commitment to advance the concerns of the disability community," an e-mail said.

For information about the games, visit their site here.

Sadly, US media is missing from coverage of the Games which are being held in Idaho, according to an article posted by PatriciaEBauer.

Kindle 2

A new Kindle (Kindle 2) has been released by Amazon, shipping to begin on February 24. I am hoping to get a demo so I can update my review. There are reviews out there, but we need some by people with disabilities who can try out the joystick, for example , and the text to speech functions to see how they work.

Please follow the labels below to read about Kindle and how it's useful as assistive technology.

Wheelchair rage

I've heard the words "road rage" over and over again, but rarely have heard anyone refer to wheelchair rage. Yet I see things happen that warrant using the term, anything from people expecting wheelchair users to always defer to walkers and then overreacting when they don't, to incidents where folks bully or even assault those in wheelchairs, possibly causing injury.

This is not to imply, by the way, that all people in wheelchairs require coddling nor is it a suggestion that wheelchair users should go first. But there's a difference between expecting a wheelchair user to wait to be the last one to leave a theater when it's emptying and reasonably accommodating him or her in the flow of traffic. Due to the often segregated treatment of people with disabilities and "special" accommodations (that may not be so "special"), our society still is trying to understand what it looks like to include people with disabilities in the crowd.

Much like road rage, wheelchair rage occurs when someone decides he or she wants to be first or someone else does something that annoys him/her or gets in their way. Due to the common misperception that wheelchairs will slow others down (when actually wheelchairs go faster), wheelchair rage can happen upon the mere sight of a wheelchair. Unfortunately, this can lead to overreactions that create problems and situations.

Some people just have to say something, for example. It can range from verbal wheelchair rage by saying things like "Your wheelchair is in the way" to an endearing remark like "It would be best if you waited until everyone else passes". I've learned over the years that a sense of humor works best, especially in a crowd. Ignoring such remarks also works. I've learned not to get into debates about my civil right to move about like the rest of the world. It's similar to dealing with someone who commits road rage. He or she has decided that wheelchairs are a problem and do not fit his or her agenda, and sees nothing wrong with breaking laws, i.e. like passing illegally and unsafely on the wrong side.

I've also seen people commit physical acts of wheelchair rage in crowds by going into line in front of me, stepping over my footrests and blocking me and holding up their arms to try to prevent me from moving forward. Sometimes, just as with road rage, there isn't much one can do for safety reasons. And since it's often not seen as wheelchair rage, the person doing it is sometimes hailed as a self appointed traffic cop, even the "go to guy" who keeps things from getting out of hand.

Some people just don't believe there is a way for wheelchair users and those on foot to move equally about this world because they have never seen it. Things are changing. The more mobile wheelchair users get, the more places we appear, the more we are able to get out and show up, the more chances people will have to see how smoothly we can all exit together, share aisles in stores, and sit in the same restaurants without much of a fuss.

And then maybe we'll see fewer instances of wheelchair rage. Of course, considering that road rage is out there, it won't disappear. There will always be people who have to be first and will risk anything to do that. But a few less times hearing that I'm in the way would be appreciated.

About strangers and angels

One of my friends sent me this video of a song named Strangers and Angels, saying she thought it would be great for this blog. It's co-written by Kara DioGuardi, who is the "new judge on American Idol".

Kara talks about the song with another co-writer before performing it, about how the strangers we meet and the interactions we have with others teach us things, despite our inability to see it. [The song begins halfway through the video at about 3:30.]

The danger of denying history

In all, between 200,000 and 250,000 mentally and physically handicapped persons were murdered from 1939 to 1945 under the T-4 and other "euthanasia" programs.

This was referred to as murder of the unfit.

Forced sterilization of persons who suffered from diseases considered hereditary, such as mental illness (schizophrenia and manic depression), retardation ("congenital feeble-mindedness"), physical deformity, epilepsy, blindness, deafness, and severe alcoholism was the forerunner of eugenics. Killing those who were a burden on society was used to justify " the systematic killing of the mentally ill and the handicapped. In October 1939, Hitler himself initiated a decree which empowered physicians to grant a "mercy death" to "patients considered incurable," not to alleviate suffering but to cleanse the Aryan race by eradicating those considered to be genetically defective.

After I read Meredith Gould's blog over the past week and what she refers to as the Williamson snafu, and the "toxic, pernicious and woefully durable nature of anti-Semitism and anti-Judaism", I spoke to her about my need to join in solidarity and speak up about how this is a larger issue, one about how we treat human beings.

When Meredith writes that Williamson has said out loud what far too many others think privately relative to the Shoah and Jews , I think of the reactions I get when I write about disability and eugenics and disability and laws for assisted suicide. There is a great deal of denial about what is going on.

Stephen Drake over at Not Dead Yet writes that the worldwide euthanasia movement doesn't have an interest in limiting "eligibility" for euthanasia or assisted suicide to people who are "terminally ill," but typically introduce legislation as a "door-opening" strategy. In fact, here in the U.S. the latest move - in New Hampshire - is an attempt to redefine "terminal condition" to encompass any "incurable" condition that will result in "premature death."

The word "incurable" was applied to disabled people during the Holocaust. As Stephen Drake points out, having any kind of spinal cord injury lowers one's life expectancy so yours truly would be included, and this language would include many disabled people.

Those who deny the Holocast deny the history and the truth of those who suffered and died. Worse yet, they deny the ongoing and "woefully durable" anti-Semitism and - yes - ableism that dehumanizes people and devalues their lives.


[image description: Taken from Chewing the Fat, it shows the symbol worn by those with disabilities in the concentration camps. It is a ' black triangle (for asocial) with a white strip of cloth with the word BLOD (stupid) written on it'.]

Announcements: Developing Skills in Communication and Cultural Mediation in Dialogues between Providers and Deaf Patients

Bioethics and Humanities Center Seminar

Thursday, February 12, noon to 1 p.m.
2507 Setnor Building
(on Irving Ave. at intersection with Waverly--
Setnor is an addition just to the right of Weiskotten Hall, which is set
back from Irving Ave.)

Developing Skills in Communication and Cultural Mediation in Dialogues
between Providers and Deaf Patients

Michael Schwartz, JD, LLM, PhD
Assistant Professor, Office of Clinical Programs
Director of Disability Rights Clinic
Syracuse University College of Law

Marjorie DeVault, PhD
Professor of Sociology
Maxwell School of Citizenship and Public Affairs
Syracuse University

Access for people with disabilities in the medical setting poses a
challenge and an opportunity for medical personnel. In this talk, Professors
Michael Schwartz and Marjorie DeVault will engage in a dialogue with the
attendees regarding ways for health care providers to communicate
effectively and develop competency in cultural mediation, focusing in
particular on communicating with deaf patients.

Brainstorm with Michael and Marjorie on how to raise awareness in the
medical community about disability, enhancing communication between doctor
and patient, and improving the ability of medical providers to understand
disability as a cultural and social phenomenon.

For more information about Bioethics and Humanities Center Seminars,
contact Rebecca Garden at gardenr@upstate.edu.

via the Society for Disability Studies list serv

The heartbreak of moral distress

This NY Times article speaks to the moral distress felt by doctors and nurses who feel trapped from doing the right thing for patients "by the competing demands of administrators, insurance companies, lawyers, patients’ families and even one another." It is a serious issue, because health care professionals drop out of settings where they are most needed, leaving behind those who become numbed in order to cope.

I worked in a hospital before I went to law school. My job was to do paperwork from noon to 3pm and then run the desk in the Operating Room wing on the 3 to 8pm shift. This meant that I did the Operating room billing, answered phone calls, ran errands for surgeries that ran past 3pm (getting blood, supplies, etc.) and also called staff in if there were emergency surgeries after 3pm (highway accidents, explosions, etc.) It was a job that ranged from being boring to overwhelming in a split second.

We often had pot luck dinners in the nurses' lounge where I got to know the OR nurses better. They were highly skilled, yet underpaid women with an extraordinary sense of commitment. Many times I saw them stay after work without pay, sacrificing their own lives to do so. I saw conflicts between doctors and nurses about patient care even back then, over twenty five years ago.

And I saw heartbreaking cases. I was in the hallway when a surgeon emerged from an OR, pulled off his or her mask and had tears in his/her eyes after losing a patient. When a patient was doing poorly, nurses came out to my desk to talk during their breaks or swept past grumbling about this or that. Grumpiness was a sign that things were not going well behind the swinging doors of the OR.

So if you add moral distress from insurance situations and other factors into this scenario, I can understand, even from limited experience in the OR wing of a major hospital, how health care professionals could just hit a limit. It's a tough gig to start with.

Anyway, check out the article if you have a chance. Because when health care professionals cry out that they cannot do the right thing for patients, those patients are you, me and our loved ones.

Abuse Found at NY Psychiatric Hospital

From the NY Times:

After a yearlong investigation, the Department of Justice portrayed the unit at Kings County Hospital Center as a nightmarish place where patients were not treated for suicidal behavior, were routinely subdued with physical restraints and drugs instead of receiving individualized psychiatric treatment, and were frequently abused by other patients.

........

The investigators found that the psychiatric service operated like a prison. The report said that instead of meaningful treatment and diagnosis, the patients received frequent visual checks by the staff, and that even when patients were supposedly under watch, violence and attempted suicides occurred.

Darrell Gwynn Foundation Wheelchair Donation program

This month's issue of SCI Life highlights the following organization and since I get requests for places to donate to help people get wheelchairs as well as places to go to get help with getting a wheelchair, I'm passing it along. This organization assists children and young adults in need of wheelchairs. Please go to the link to visit their site for more information.

via their site:
Since the organization was formed, the Darrell Gwynn Foundation, in conjunction with its partner Sunrise Medical, has been donating new, power wheelchairs to children and young adults in need across the country. The Foundation receives many requests from people asking for assistance in getting a wheelchair for themselves or a family member who cannot otherwise receive one. The cost of a new chair can be alarmingly expensive and coupled with the other numerous costs associated with spinal cord injuries and debilitating diseases, it can be troublesome to purchase a new wheelchair. On average, a power wheelchair can run approximately $10,000. Unfortunately, insurance does not always cover the expense.

Having the right wheelchair is of the utmost importance to those who suffer from spinal cord injuries and other debilitating diseases. Wheelchairs serve as legs for those who cannot walk. DGF works closely with its recipients’ physical therapists and doctors to custom fit the recipient with a wheelchair that will properly fit their needs and abilities.

To date, the DGF Wheelchair Donation Program, with the assistance of Sunrise Medical, has provided over 25 new wheelchairs to underprivileged youths and young adults, valued at over a quarter of a million dollars.

[visual image: Jessica Greenfield, a young girl who has CP and is sitting in a pink wheelchair, is shown next to Darrell Gwynn, who is in a wheelchair. He is smiling and giving a thumbs up.]

Coach Summitt hits 1000 win mark as Lady Vols defeat Georgia

In an impressive win for a young team composed mostly of freshmen and sophomores, the Lady Vols resoundingly beat Georgia, 73 to 43, to give Coach Pat Summitt her 1000th win. In her 35 years as women's basketball coach solely at the University of Tennessee, Pat Summitt has gone from setting up chairs for games to heading a program where the court they play on is named "The Summitt". In a ceremony after the game, Coach Summitt thanked her staff, fans and the many players and people who have been part of her 35 year history as she was honored for this milestone.

No other NCAA women's college basketball program, much less a single coach, has 1,000 wins. The second-winningest coach in the women's game is Jody Conradt, who retired at Texas with 900 victories.As for the men, only one Division I coach has more than 900 wins — former Indiana and Texas Tech Coach Bobby Knight (902). via thetennessean.com

Her son Tyler shares some stories about his mom on this video, in which he talks about her values and what she's taught him as a parent.

You can find more videos and stories here

Congrats to Coach Summitt, who was quoted as saying:

"It's a hard number to even comprehend.It's a time to reflect on a number of things, the administration saying yes to women's basketball and giving us an opportunity to play on the biggest stage in the women's game. I appreciate that."

How's your winter going?

[visual description: A photo entitled My Winter Has been FUN but Snowy from Marty, an iReporter, showing his wood ramp covered with snow taken from the top of the ramp- snow is piled high all over - on the rails, etc.]

And here's more fun in the snow- wheelchair donuts!



and a wheelchair user pulling a sled!

On faith and adversity

Amy Welborn writes about Michael's last column, in which he talks about Father Benedict's writings and "the big lie":

The “big lie,” Father Benedict said, (and I’m paraphrasing him at this point), is to think that if we say all the right prayers and live correctly, then nothing bad will ever happen to us. Sadly, there are many good people who have lost their faith by believing such a lie, and that makes it a big one indeed!

The opposite of the big lie? Trust.

But go on over and read it for yourself.

There is also information up about the services for Michael.

Sad News

I was saddened to hear of the sudden, unexpected death of Michael Dubruiel, a Catholic author and Amy Welborn's husband. Amy, who writes Charlotte was Both and is an author, was extremely kind to me when I began writing this blog and she and her young children are in my prayers and thoughts.

I want to pass this along from her blog (and I offer this link to Michael's books) and a link for a collection

We are devastated and beg your prayers.

Many thanks for all of the prayers and notes. It is overwhelming. Many have asked what they can do of a material or concrete nature. All I can say is to simply buy his books. Not from me, because I am in no position to fill orders, but from anywhere else. He long ago promised God that he would give all the royalties of The How To Book of the Mass to the children’s college funds, which he did faithfully. It is in good shape because of that. Buy them, read them, and give them away to others. Spread the Word. That is what he was all about.

Internships for College Students with Disabilities

via their site:
ENTRY POINT! is a program of the American Association for the Advancement of Science (AAAS) offering outstanding internship opportunities for students with disabilities in science, engineering, mathematics, computer science, and some fields of business. To meet the challenge of the competitive global economy in the new millennium, private industry and government research agencies must expand the pool of technical talent.

AAAS has developed unique partnerships with IBM, NASA, Merck, NOAA, Google, Lockheed Martin, CVS, NAVAIR, Pfizer, Infosys, and university science laboratories to meet their human resources needs. Working with its partners, AAAS identifies and screens undergraduate and graduate students with disabilities who are pursuing degrees in science, engineering, mathematics, computer science, and some fields of business, and places them in paid summer internships.

The ENTRY POINT! program includes opportunities in private industry and government agencies. Students with disabilities can apply their skills in a real-world setting in competitive summer internships.

The ENTRY POINT! internships are particularly valuable because of the availability of mentoring and assistive technology, facilitating the entry and advancement of individuals with significant disabilities into competitive employment and research at all levels.

For more information , go here.

So God - I'm here

So God
I'm here
(in the vast yet finite space my body subsumes)
Perched upon wheels spinning propelling
Proclaiming I AM

Imago dei
Each human has intrinsic value
Four limbed, two limbed, scarred, botoxed, obese, thin, bearded, bald, rich, poor, blind, seeing, deaf ,hearing, walking, rolling, limping
You draw us all near

Who am I to judge
(Tolerance begets more, not less space)
The simplest prayer is heard
Psalmists shout complaints and praise
Let me not be put to shame (by these, mine enemies within and without)

Prayer is not always pretty
Or without doubt

Sometimes it begins with
So God I'm here.

Wonder in the van

My friend Sue's guide dog is named Wonder. She travels more than many people do and just returned from a cross country ski trip with Sue. Last night Sue and I decided to show Wonder my van.

I deployed the ramp and Wonder hesitated a moment. Then she led Sue up the ramp and inside the van, walked about a little in its spacious goodness and checked out the back seat. Ruth Anne, Sue's friend (yes, we've noted all Sue's friends are named Ruth, an odd coincidence) commented that Wonder was looking for her green blanket, which is usually put on the seat.

After a few minutes in the van, Sue planned to exit, but Wonder didn't want to budge. She apparently liked my van very much, which shows that she has good judgment about sweet rides. And I couldn't help but say how appropos it was that there was Wonder, in the van. Wonder in the van. Wonder. In the van.

And the three of us just stopped for a moment and thought about that, these friends who made sure I had outings before I got my van. (As did Wheelchair Dancer and our third companion, who couldn't be there last night.) It's about friendship, not geography, since Ruth Anne lives in California and Wheelchair Dancer travels and travels.

Living with my disability has taught me about wonder.

Can a quad make a salad?

It depends on your level of injury, but Chris shows some great tips for those who can - from buying ingredients already cut up to resourceful ways to put a salad together sans dexterity - in under 13 minutes! (He also shares a special tip how to balance yourself to get things out of the refrigerator, but make sure you're wearing a seat belt before you try his method- and watch your head.)