New to the blogroll : Crimes Against People with Disabilities

In response to the underreporting of crimes against people with disabilities, a new blog has been started. I just put it on my blogroll. It's called Crimes Against People with Disabilities

The way it works is that you can submit links, articles, etc. It's described as an ongoing blog carnival, without any specific dates. Go there to find out how to submit information and help gather stories, facts and links in support of a database for the US.

I've written on this blog (see label below) about hate crimes before. It's a serious problem that needs to be addressed via legislation- and brought out for discussion.

32nd Disability Blog Carnival is up!

It's here with a wide variety of posts on the theme "Standing Outside the Fire."

The next carnival will be hosted right here at Wheelie Catholic. The theme is "Appreciating Allies" and submissions are due by March 10 - the carnival will be up on March 13. To submit an article, email me or go here.

If you have a post that doesn't fit within the theme, but is disability-related, feel free to send it along. I'll fit it in. (I know as someone who contributes posts that sometimes the topic just doesn't relate to where I'm at, and appreciate everyone's flexibility when I've submitted posts - so I'm going to do the same.)  I already have a number of great submissions - thank you!

Frida Kahlo at the Philadelphia Museum of Art

 a slideshow. 

I woke up this morning to the sound of a knock on my front door. My  aide has been sick (as have I) and I've been using a backup system that actually works well for a quad - hailing joggers who go by and letting them know I need a few things done if they're in the area. (This beats setting up help over the phone that cancels at the last minute or is, quite frankly, not affordable.)  

If you ever asked me if I'd do this, I would have told you no, but reality is different than fantasy and, after all, a quad's gotta manage. 

So the cute guy knocking on the door says to me "Need any help?" and I said "Yeah coffee." So he sets up my coffee machine and we chat while he grabs the garbage (each volunteer does two things, enough to help, not enough to be burdensome). He tells me that he works for a company where someone I played tennis with works, although the fellow has retired. We tell a few six degrees of separation stories and have coffee together.  

Let me tell you, it's much more of a hassle to get someone to help than to just do the darn thing yourself when you have to keep track of what you ask for, count things out.  I can't speak for everyone else who has a disability, but that's my take. (This is why when I hear the myth that pwd can do for themselves, but some won't and get judged for not being  independent enough, I laugh out loud. Shows how the person never tried to manage by depending on others for basic necessities.)

So what does this have to do with Frida Kahlo? Her life was full of surgeries, healing, adapting. I suppose when I saw the movie about her life I was touched by the tender care she received, the ministrations. It's a different culture.  In our culture, the pull yourself up by your bootstrap culture, it's very much about survival. 

Experts  make up  a chart as to what "needs to be done" and, in some ways, you get treated like a potted plant that needs to be watered by the system here. The aides check things off and some try to get around doing things, questioning whether it's possible to streamline even more. (Yeah I hear there's a new watering system out there for quads...)

Meredith has never been like that with me. She's busy and there's much to do, but I rarely see that side. Once she's in the door, the clock stops and her time is mine. She attends to what she knows needs to be done, then asks what else. What else. What else. In a patient, respectful tone.  Some days it brings tears to my eyes. Tears of gratitude.

You can't chart out a  life. The cat knocks things over, one of us spills something, I decide I need to have the pages turned on something or other, etc.  Because of my lack of hand function, I can't always predict on a certain day what I'll need help with, but I can predict it'll be time consuming.  What's needed is the Frida Kahlo tender type of help, not the bootstrap method. 

So we are flexible. I get to know friendly joggers. And, in the end, it's all very spiritual and not pragmatic at all. Difficult to chart. Perhaps impossible.  Ask Frida.

Yours truly, lapsed Catholic

In the Pew surveys, 31.4% of the respondents said that they had been raised as Catholics. Another 2.6% had entered the Church as converts. But again, 10.1% had left the Catholic faith. Thus for every new convert, the Church is losing roughly four cradle Catholics. - via Catholic News Network

I get a lot of email from lapsed Catholics. Many are cradle Catholics. Some write me because they have left the church, read my blog and get drawn into discussing Catholicism again - perhaps something I've raised in a post. They have a relative, perhaps a child, with a disability. Others have acquired disabilities and write for resource information.  Still others have aging issues or have parents with aging issues and often write to me about how they feel their parishes don't address these issues.  Some were born with disabilities and left the church because of things that were said to them.

Most of them are looking for answers. From a blogger. Answers to help them with a crisis of faith, to find support from their church. Sometimes they need hands on help. I  network with people, sometimes Catholics, to help these folks out with things like ramps, equipment or care.   

I didn't start Wheelie Catholic to be a know it all, although I know some think that's the case. After all, I'm just another Catholic - and I can't even get into a pew.  Heck, I can't even kneel.

I have no problem, however, with the fact that my blog has become a magnet for lapsed Catholics. After all, if I can direct people toward resources, that's a good and positive role to play. 

On one level, I find it quite sad that people feel more comfortable asking questions of Wheelie Catholic than, for example, a parish priest. Why not pick up the phone to your local parish and ask? I might write only to be met with a response like Oh no I would be afraid to ask the priest that. Or a response like Oh, he won't know! 

I'd like to tell everyone that every single parish out there has disability ministries to address issues that concern them. I can say that these ministries are being developed on a diocesan level. And that information is more than some clearly expect to hear. I get positive responses when I send them the address of the church in their diocese that has such a program (available over at USCCB website). 

I also get positive responses when I point out that there are organizations, listed in my sidebar, for Catholics with disabilities. This makes some feel connected, although when some of them who are lapsed Catholics actually go back to a parish and try to 'fit in', I often get email that's not as positive. That part is more difficult still. 

It would help if we had disability ministries in each parish. And I know - I've been told this is my "pet project" because I have a disability. (Oh selfish me!) But with the number of lapsed Catholics (all of whom are aging every day, deny it or not ) I don't see why my " pet project" should be considered such a wild and crazy idea.  As for the fact that some people tell me their parishes have other work to do and don't have time for it, well let me tell you what I think.

I think that kind of attitude alienates people. There are real social issues affecting Catholics with disabilities, their children with disabilities, and their aging parents with disabilities that require the compassionate and hands on attention of others in local parishes.  And without a disability ministry, these issues don't get addressed.

Others say that their parish doesn't need a disability ministry - that things "get worked out".  My response to this is that it's the things your parish isn't aware of, the issues that aren't brought out into the open that cause people to leave and not come back.  What about that group that met in a non-accessible location under your parish's name? How about the woman running it who told a disabled parishioner that she could go to Mass, so what was the problem?Why did she need to feel like she should be included in everything? Do pastors even know what gets said, under the auspices of their parish organizations, to people? Without a disability ministry to effectuate communication about the very real issues of ignorance that our society still has, where is a parishioner with a disability who is excluded to go? Well - out the door perhaps.  

This is not to say that every Catholic with a disability has these difficulties in his/her parish. Not at all. I get some emails from people who are very active in their parishes and happy in their community.  Some of them think that if others with disabilities just went about things the right way, they too would be included.  They did not run into any of the issues discussed above and, as a result, think that anyone who complains is exaggerating or, worse yet, should be considered a troublemaker - in fact, they are the problem!  I call this attitude   the 'pull yourself up by the bootstraps' method. It's a bit like Darwinism. Show up and take your lumps - or not. And again, someone is out the door.

But what do we care? Do we care enough to actively address the issues that are excluding people?

Oh - if you could just read the emails I get from lapsed Catholics, you'd want to make the time for it too. Excluding people who want to be part of the church truly is a sad thing. And if that doesn't persuade you, perhaps this will:

If they qualified as a separate denomination, the Americans who have deserted the Catholic Church of their childhood would constitute the third-largest religious group in the country, with 10.1% of the population.

La Vie en Rose: life's no bowl of cherries

When I found out that La Vie en Rose was available to view at Netflix, I decided to watch it, curious to see the Oscar winning performance of the French actress, Marion Cotillard,who  portrayed Edith Piaf. I was not disappointed.

On the movie's site, you can see some scenes from the film. The film ranged from joyous to tragic and, in the end, it's a movie about the life of the singer, who grew up in a whore house, a circus and singing on the streets only to find her way to fame. The tragedy of her life was that she also found her way to addiction, and although love eluded her, she never realized that she couldn't get from fame and talent what she really needed.

An altogether very familiar Hollywood theme, but done in a remarkable way. Perhaps it's the fact that the film is in French, or the cinematography which showed the actress in Chaplin-like portraits, her small face framed in a bobbed cut with enormous dark eyes staring out. The waif-like portrayal of Piaf juxtaposed with her wild child existence made her so vulnerable and appealing that it was difficult to step away from the film afterwards, to leave its spell.

I didn't want to watch it at times, particularly the most painful scenes, but it kept drawing me back in for over two hours. And it's easy to see why it won Oscars for make up and best actress.

How a small mishap blacked out Florida

This morning authorities are probing how a small fire and a problem with a switch caused a blackout to happen that covered large areas of Florida. 

Yesterday, I just discovered Starbucks was closing for three hours nationally when I saw on the news that Florida was blacked out and thought "I like coffee, but isn't that a bit extreme?" Then I realized that Starbucks wasn't that powerful. 

Yet. Although they are promising customers perfection, i.e., if you don't get your beverage exactly the way you like it, they guarantee it will be fixed. Wow. If we could only spread that philosophy to social problems.

Imagine - your insurance claim is denied and you can call them up and actually negotiate and reason with them so that you feel satisfied that the product they sold you is actually worth something. Or you can negotiate the price and quality of your assistive device or- even better - your health care.  Or the access thereto.

Right now this perfection thing is only a policy at Starbucks, however. Not anywhere else. The rest of us have to settle whenever we're not in Starbucks drinking the beverage of our choice (if we can find a table we can fit at, but that's not covered in the perfection policy.)

For the people in Florida, I bet this morning they're just satisfied that  the lights are back on and they can see the beverage they'll be drinking this evening. 

Small mishaps. They really can lead to giant blackouts. Most of the time, however, it's not something you can see that obviously. 

Angry people

I deal with some of them in my work. 

On some days listening to them helps. Other days, it seems as if they try to take everyone within distance hostage. Some scream, some get passive aggressive, while others simply lump everyone in the world together, and nothing - absolutely nothing - you do satisfies them at any level.  They become sullen and uncooperative.

Most people  I deal with are not like that. Some folks are very grateful for any help. Many strive to understand the way things work. It's certainly helpful to work with people who do listen to what I say. 

This morning someone just screamed at me, not for anything I did but for what, I suppose, I represent. I'm used to that after twenty odd years of doing what I do. 

I'm always mindful of how it makes me feel to be treated in these ways when I deal with others in the system. It's not pleasant. It's usually not conducive to getting things done either.

Although , of course, if your objective is to feel superior to the person who is trying to help you, I guess it satisfies that need. 

Just something to think about on a Wednesday morning. But, then again, what do I know?

In 3 hours all Starbucks are closing for 3 hours

Wow. I hope they're going to take this opportunity to move tables around to make wheelchair access.

Actually, according to this piece, it's for "barista re-education".  To focus on the coffee customer's experience.

I'd like there to be more room at the tables for wheelchairs. Did I say that? It really would enhance my experience to be able to sit at a table, no matter how much I like or don't like my coffee.

Just think - at 5:30 p.m. EST all the Starbucks' doors will close and employees will inspire each other, improve their favorite beverage - but hey -

Getting in the door - and staying there - without other customers falling all over me and sometimes into my lap really is important. 

Guys? Guys? Put down the whipped cream, okay? Really I just want you to try that table over there - a tad more room there - the frappucino tastes fine just the way it is....

What the fish think of certain Academy award nominated songs

Found this gem of an animated short on Hulu, spoofing the theme song from Titanic and figured it was time for an irreverent look at the Oscars after the last few days. It's completely off topic. But funny.

And for a great post on the Oscars and disability, see this.

Go fill in my copy - please

Someone told me one day that by taking a survey I would be "helping the disability community".  She didn't tell me why. "They need people who are paralyzed," she told me. (I suspected this was closer to the truth. )  And doesn't necessarily invalidate reason number one.

But here's what happened. I read the survey. The questions were unclear. I took a lot of my time away from my work that day trying to figure out what the researcher was asking. I had a deadline, as I often do. Two hours later  I gave up on the survey, emailed  my friend and explained that I couldn't take the survey and why. 

The main reason I usually don't complete a survey is because, after reading it over, I don't feel I can answer the questions consistently. It might be because the questions are too vague and open to too many answers. I don't want to spend all day trying to figure out the "best" answer. Or it might be because the questions are too intrusive. 

And there you have it. Surveys in and of themselves may not be good/bad things, but I've certainly run across surveys that are not a good thing for me. You may disagree - and feel free to go fill in my copy. Please.

On snowshoes and not everyone being out

Yesterday a friend and I went for a walk in my neighborhood. Although the snow was melting, it was still a bit like going on winter trails, complete with unshoveled mounds of snow on sidewalks, curbcuts and deep puddles from melt off. 

I did a few "roll abouts" where I just went into the street and stayed there to avoid the sidewalks of homeowners who didn't shovel.  My friend commented that she should have brought her snowshoes along.  A passing motorist honked at me and pointed at the sidewalk. 

"As if, " I said "that's a viable option."

My friend peered at the snow covered sidewalk that hadn't seen a shovel. "No, it's not."

Then we came upon an older couple walking along. The woman said "Ooooh everyone's out today!"

I looked over my shoulder, but everyone was looking at me. "Everyone?" I asked.

"Everyone!" her husband echoed and they happily slap-clapped each other on the back. 

"Oooh, not everyone," I said. 

They looked at me and kept walking. 

Of course I continued speaking while my friend cringed. "Only those of us who can afford power chairs that can go through the snow. No, let me correct that. Only those of us with ramps who can afford power chairs -"

"I should have brought my snow shoes," my friend said. "Do you know that I might upgrade? There's a pair that you can buy with special boots that give you better traction."

I looked at her. "And what do those cost?"

She shrugged. "An extra hundred dollars."

A hundred dollars, eh, I thought, looking down at my ten thousand dollar power chair that I got for half that and am still paying off. And will be paying off.  And paying off. 

No, not everyone is out.

A Good Resemblance

I just posted chapter one of a novella named  A Good Resemblance over at A Different Light.

Creating possibility

Imagine a chef named Galen who opens up a year long apprenticeship program for those who have been homeless, who are addicts, to teach them how to cook - and runs it like any other program, allowing them to work, gain job experience and take four hour classes in cooking. Imagine that he got the idea from his wife, who worked at a literacy program and that he wanted to do  more. So he called it Chefs in the Making and made it - a reality.

I woke up this morning to see this article and knew that I had to post about it. Why? Because it got me thinking about whether this kind of idea could help on the issue of employment and people with disabilities in opening up possibilities.

Galen opened up possibilities for people. He took his own talents and resources and is sharing those with a population that would probably not get a second chance otherwise. He created possibility. 

He says its reward is to see how people do as they go through his program, what they do with the opportunity given to them.  

When we talk about the issue of employment and look at the dismal figures for people with disabilities, I'm open for creating possibilities by thinking outside the box.   In fact, that may be all that's needed because there are numbers of people with disabilities who, unlike the trainees in Galen's program, already have the skills and education they need.

They just need the opportunity.

Untold Stories: Who is Joseph Kelly Sr?

He was a family man and a friend who gave unconditionally.

He died last week after pulling over on a freeway to help a homeless man in a wheelchair who was stuck on a busy median one night. Both were struck - and killed - by a truck.

Joseph Kelly was not unused to doing such things. According to friends and family, he was constantly helping others, there for them.

Handy with tools and things mechanical, Kelly frequently mended or installed items for friends and neighbors.
"Just last year he put three ceiling fans in my house as a favor," said Stango, one of his bosses.
After his marriage broke up, Kelly moved in with Joe Jr. and his son's fiancee in Levittown, where neighbors saw his generous spirit.
John Wright, 50, who lived across Holly Drive, said Kelly once disassembled a neighbor's noisy pool filter "and went on the computer to find out what's wrong with the motor. Sure enough, he figured it out.
"I'd say 'Joe, I can't move this bundle of shingles.' He'd come over and pick them up, even though he's older than me. He would help me do anything." via philly.com

No, I never met Joseph Kelly, Sr, but I've met people like him in my life. (They're all around - like this young gamer who helped out his year old nephew with a partial liver transplant.)  And when I saw this article, I did what I'd want someone to do for one of those folks - remember their lifetime of giving and celebrate their spiritual generosity.

Now you know who Joseph Kelly Sr. is too.  

[visual description: A photo of Joseph Kelly Sr. is shown. He is smiling and wearing a dark suit with a light blue tie.]

Faring Through

Woke up to a fair amount of snow here - and it's still snowing. I didn't listen to the weather predictions yesterday since I was busy, so it took me by surprise.

It's been a strange couple of weeks. I still have the flu, although I'm told this lingers and not to expect to feel better for weeks. I'm trying to divide my limited energy among what needs to be done and blogging - alas!- falls by the wayside some days. I miss it but don't have the time or energy to get back at it full blast quite yet.

Mostly at night I find myself exhausted, trying to decide which DVD to watch. Night before last I saw Becoming Jane, which starred James McAvoy (who played the character with muscular dystophy in Rory O'Shea Was Here). Becoming Jane wasn't a bad film although I heard it panned when it came out. I enjoyed the repartee between McAvoy and Hathaway, who played Jane. Last night I saw The Martian Child with John Cusack and thought that had its redeeming moments too.

When I don't feel well, movies feel like ships in a bottle that float up with messages attached. Instead of dissecting the film, I wind up going right to the chase and seeking out the message - not a bad approach to take. In the Martian Child, the message was how important it is for each human being to have people to belong to, for each child to feel loved and as if he/she belongs. Even if he thinks he's a Martian.

And in Becoming Jane, the message was how love can shape our expressions and the way we "are" in the world. How love makes us choose - or not choose - different people - out of not only our love for them but for the ones they love.

I'm not a big believer in dwelling on unrequited love. There's too much love out there to do that. One of the differences between the world of Jane Austen and ours are the number of choices young women have. Becoming Jane, even if for whatever reason you don't find the film engaging, does a good job of showing the very limited choices young women had within the confines of the society and family life they inhabited.

Well it's still snowing here and my pile of work is still as high, so back I go.

St. Blaise and the wild schoolchildren

The other night as I lay in bed with my throat hurting, my lungs congested and wishing for relief from my symptoms, I decided to pray to St. Blaise, the patron saint of throat disorders and wild animals.

That may sound like a strange combination, but it makes sense based on my memories. Because, as a child, I remember a very memorable St. Blaise blessing ceremony that happened when I was in grammar school.

The parish priest and a visiting priest announced they were going to bless our throats by holding two candles (in a V as shown in the photo) up to our necks and reciting prayers. We were asked to line up in our usual fashion, which meant, according to the nuns' rules:

1. Don't talk, look right to left or stop moving until you
2. Open your mouth for Communion; enter the confessional; kneel or arrive back at your pew

This meant that we were to be continually moving as a group at all times, never lingering, never slowing down the line, to get things done as quickly as possible, the theory being that this cardinal rule covered all situations we might face. It usually did, but failed miserably when it came to St. Blaise and the blessing of the throat.

As the first two children in line approached each priest, it didn't take long to see that things weren't going well. Each child kept moving along the communion rail as the priest put the V shaped candle around his/her neck, as we were taught to do. There was no exception in the rule that applied. Each priest haplessly followed along down the rail with the child, saying the prayer and finding himself at the opposite end of the communion rail by the time he was ready for the next child. The good news, however, is that we were like little lemmings, so we all followed along with our classmate, taking the lead of the child with the candles around his/her neck and another child was ready and waiting at whatever point the first child was released.

The nuns began to walk up and down the communion rail, telling us to "Hold still" and "Stay in place" but this made no sense to us and we fell into confusion, some of us standing in one spot while others followed along with the group.

The parish priest looked at one of the nuns and asked "Can't you teach these children to stand still?"

Which is what we spent all afternoon learning about - how to see the exception in the rule, as the nuns put it. You have to be able to discern when to break a rule, we were taught for the first time, not to just follow it.

"Ooooh!" we all said, rubbing our necks.

I couldn't help but notice that the next year there was no St. Blaise ceremony, which was too bad.

I thought it was a lot of fun.

I sound like Boris Karloff...

...which is making my voice recognition software very unhappy. But it's a great way to get rid of telemarketers.

Sometimes life just keeps giving us lessons on not taking ourselves too seriously. Boris Karloff once said "My wife is a woman of very great taste. That's why she's never seen any of my films."

My brother in law is back in the hospital, after having chest pains Friday evening. Tomorrow he's having tests to see what's going on. Could be just cautionary, might need another stent or bypass surgery. Will have to see.

I called my nephews to talk to them and they asked if I should be talking. "You sound like you're dying," one said.

"No, my voice just sounds like Boris Karloff," I said.

"Who's Boris Karloff?"

"I'll send you a link," I said. "It hurts to talk."

And so it does. So I'll keep this short. Would truly appreciate prayers and positive thoughts for my brother in law, sis and nephews.

Update: The tests showed that my brother in law is fine. No need for more surgeries.

I'm too sick to blog

Really. Flu, cold.. My plan is to be better by tomorrow since I've been sick several days.

31st Disability Blog Carnival is up....

and the theme is Superman. It's being held over at Writings of a Wheelchair Princess. Emma writes:

"Our theme for today is Superman. And I must admit here that I knew I was giving a theme that was a little out there. But I wanted to do something a little different and see what happened. I had my own ideas about how this carnival and it’s submissions would turn out. I was completely wrong. It’s much better."

It's a great carnival with very interesting and enjoyable posts to read. After reading through it, I just can't wait until it's my turn to host it next month! Will be so much fun.

So what are you waiting for? Head on over!

Cellphone can read to you

A Nokia cell phone can take pictures and read what it "sees" back to a user. It's pricey and although accuracy is said to be good (not excellent), this device represents an advance in technology for the visually impaired.

The phone, unlocked, costs between 500 and 600 dollars but it's the software that's more expensive, ranging in the $!500 range. This is the secret behind the technology, however.

"But it's the character-recognition and text-to-speech software from KNFB Reading Technology that makes it so powerful. KNFB is a joint venture of the National Federation of the Blind and Kurzweil Technologies."

Users have found it helpful for such things as reading print from newspapers and books, distinguishing labels on items (one person used it to see which was caffeinated/decaffeinated coffee in a hotel room) , and currency. It doesn't matter whether you take the picture of the print/text upside down or rightside up - the software works either way.

You'll find more information at the link above.

In other assistive device news:

Do you use the Kindle or Sony E Reader for hands free reading? Some of my friends do. Check this out.

Borders book store plans on competing against Amazon and its Kindle by launching a site offering books for the Sony EReader. Additionally, Borders is opening some digital centers at its book stores, offering customers various services, including free tech assistance for downloading books, music and working with photos.

This is interesting, since Kindle has been unavailable for months (you can order, but they're out of stock.) It's become the new Wii. One of my friends bought the Sony E Reader instead rather than wait any longer. Personally, I'd like to see a review of either device by someone with a disability.

If there was a camera there

When I found the piece in the news about Brian, another quadriplegic, being dumped out of his wheelchair by a deputy to "check" his disability, my stomach sickened. I warned Meredith when I saw her that I'd posted a video and what it showed. And then I told her that the news coverage, as hard as it is to see, is a positive step in bringing this kind of behavior out into the light.

I, too, have been confronted by people physically over the decade I've been in a wheelchair. Part of it came from being a quadriplegic in a manual chair. I often had people say to me "Oh you can't be a quadriplegic. Christopher Reeve is one and he's totally paralyzed." Many folks don't understand the variations in spinal cord injuries. (Even in this article, it says that Brian is a quadriplegic, but still able to drive. )

Some quads can look like paraplegics to people if they don't understand the disability. Once I had bones in both wrists broken because a man assisting me "lost patience" with how slowly I "chose to move" and pulled away my wheelchair. I fell onto the ground landing on my wrists. On another occasion a woman pushed food into my face to see if I would "knock off pretending I couldn't lift my arms". And many times I've had change thrown at my face by impatient clerks who think I'm deliberately moving slowly. (And, yes, I've been dumped out of my wheelchair too. )

This kind of physical stuff happens. There isn't always a camera. And let me tell you, this woman deputy's words are classic and her behavior is classic, arrogantly proclaiming "I don't believe what you say about your disability - let's see". I've been questioned incessantly over the years about my disability, but there are these folks who cross the line and become physical. It's sickening to watch and my heart goes out to Brian. No one should be treated like this.

But the point is it's happening out there. Turning our heads away doesn't make it go away. It's time to speak up about it, bring it out into the light of day for what it is.

Because, before anyone assumes that a low level quad isn't really a quad, let me tell you that hand/arm impairments do affect one's ability to get around and do things in our quick paced world and, I suppose if it comes to that, to defending ourselves. Having paralysis in all four limbs renders one more vulnerable. Period. I'm not going to suggest anyone duct tape their hands or spend a day in a wheelchair because that just doesn't do it in my opinion. But I've lived with it for over a decade and I know what it's like to go out into an uneducated world and deal with people who are judging what I can/can't do and take out their ideas on me.

My friends, it sucks. It doesn't always reach this level of behavior, but it sucks. I wish people would educate themselves about disabilities and ask questions if they don't understand. Most of the injuries I've received over the years have been as a result of peoples' impatience on this very issue. And even though their behavior doesn't reach the level shown in this video, it can still cause injuries.

Watching how the media picked up this video and article and how it spread is a positive sign that we are making strides, that this kind of behavior is abhorrent to most people and that those who choose to engage in it face discipline or criminal charges.

What happened to Brian is an assault to him. And to all of us. Not just people with disabilities, but to each and every one of us. It's about not being treated with human decency.

"She certainly wasn't treating me like a human being," Sterner said. "When I saw that one deputy laugh that's when my blood started to boil. That's ridiculous to have that happen to me, then have somebody having a good time laughing about it."

Deputy suspended without pay after dumping man from wheelchair to "check his disability"

A news conference was held today in Tampa Florida about this incident. But a picture speaks a thousand words. Dumping someone on his face to check his disability is not only humiliating, but could result in serious injury or death. 

Brian Sterner, a quadriplegic for 14 years, was arrested on a traffic violation and received this debasing treatment. 

"He says a deputy looked at him and didn't believe he was a quadriplegic. She walked behind him, took the handles on the back of the hospital-grade wheel chair and dumped it forward.

Sterner says he tried to roll as he was going down, but hit so hard he thought he had broken two ribs. Then, while he was on the floor, deputies frisked him and tried to get him back into the chair.

Sterner says he told them how to pick him up and put him back into the chair, but because he can't feel anything from his breastbone down, he says he was injured and didn't know it. Sterner thought he had broken two ribs, but jail x-rays showed that wasn't true."
-via wzzm13.com

Investigations are ongoing, but the disturbing thing is no one in the upper echelon was even aware of this even though it happened last month.

"The Hillsborough Sheriff's Office didn't know anything about the incident until we showed them their own tape. Now an investigation is underway"

The article indicates it's a very active investigation. I bet.

Survey on Media and PWD

Over at the [with]tv blog, readers are being asked to take a survey on the subject of media and people with disabilities. I'm inviting my readers to participate.

Anna, who authors the survey, writes:

My name is Anna Pakman and I am a first year MBA student at Columbia Business School. I am conducting a survey as primary research for my paper on Media Consumption & People with Disabilities for my Consumer Behavior class. I would appreciate it if you could take a few minutes of your time to answer some questions about your consumption of television, film, Internet, and radio programming. As you probably know, the Nielsen ratings track media consumption for just about every population EXCEPT our community so the only way I can get this data is through your assistance. All individual survey responses are anonymous and will be kept strictly confidential.

Click on the above link to go read more about it. If you would like a direct link to participate, click here.

Acting director of psychiatric hospital arrested in Baghdad on suspicion of providing female suicide bombers

The acting director of a Baghdad psychiatric hospital has been arrested on suspicion of providing two women with disabilities to carry out the deadly February 1 bombing that was widely broadcasted recently. The two women were known in the area, recognized by locals as having disabilities. They acted as unwitting suicide bombers, according to authorities, and were also killed in the explosions.

And we pause now for this message

You're losing this one.

Last night at an NCAA women's basketball game between the Lady Vols and the Rutgers women's team, there was an alternate reality, parallel universe moment as the game clock apparently paused (hiccuped was the way an announcer described it) in the last two tenths of a second, leading to the enforcement of a foul that happened during that parallel universe time against Rutgers, who thought the game was over. The pause of a clock during two tenths of a second? Yeah, that probably does mean two tenths of a second went by, huh?

Before the clock malfunctioned, Rutgers was ahead by a point and in other universes where clocks are supposed to tick off the time in an orderly fashion, the game would have been over. But the officials down in Tennessee huddled and decided that alternate universe time applied and the Tennessee player made both baskets on her foul and Tennessee won by one point.

You can read about it here. Just so you know, I'm in the awkward position of being a fan of both teams, but this time I'm on Rutgers' side. They were down by 11 points at the half and came back to lead most of the second half. And Rutgers beat Connecticut earlier this week, a number one team. Last night Tennessee was at number one. This was, undoubtedly, a critical game.

Unfortunately, time was not on Rutgers' side. And none of the officials seemed prepared to handle the glitch. One of the ESPN game announcers said the clock is run by the referees from a device in their pocket.

The clock never moved again after the Tennessee player made her two baskets. When the players took the court, it stayed at two tenths of a second (".02"). The game was called over and the referees left the court before the Rutgers coach could do much about any of it. Because according to the rules, once the officials leave the court the score is approved and their jurisdiction has ended. (Rule 2, Article Four, Section IV).

That's a disgrace to the officiating at that level of play after all the hard work these players put in.

After the game, the Lady Vols' coach Pat Summit said she was unaware of any issues with the clock. Rutgers' coach Vivian Stringer discussed what remains a tainted win in this article.

Federal Decline in Hiring People with Disabilities

This piece in New Mobility suggests a disturbing downward trend in employment of people with disabilities.

-Less than 1% of federal employees are people with severe disabilities.
-Over the past ten years the government workforce increased by 5.5% but the number of employees with severe disabilities decreased by 14.75%
from the Jan. 15 2008 report, “Participation Rate of People with Targeted Disabilities in the Federal Work Force,” issued by the U.S. Equal Employment Opportunity Commission

The report states that the decline is caused by

-bias or lack of managerial training
- persisting myths and stereotypes;
- increase in contractor hiring to fill jobs at lower pay grades;
- reluctance of managers to use specific hiring programs for those with disabilities.

Take That Beach: A Documentary

David is filming the story of a group of disabled veterans of Iraq and Afghanistan (amputee, traumatic brain injury, burns) that have come to California from Brooke Army medical center rehab to learn how to surf, most for the first time



Website with "Take that beach homepage":

http://web.mac.com/davidmendez01

Not all heroes wear tights

I wasn't sure what to write about when I heard the theme for the disability carnival was Superman. But I found this quote by Justin Dart about heroism. And considering that the bottom line of a super hero theme is heroism, I figure I'll go with that.

"Finding the courage in yourself to stand for something -- that's heroism."
-Justin Dart

Those of us with disabilities have all found ourselves being put in the unwanted role of being treated as if we're brave, inspirational and heroic simply for doing ordinary, everyday things. But the erroneous assumption behind seeing a person with a disability going out and about as an extraordinary achievement has frightening ramifications when the dark side of that shows up as someone who challenges our right to do so.

Superman's evil villains wear costumes and are easily spotted. If the Joker in full makeup and clown attire came toward me in Starbucks, rudely telling me my wheelchair was taking up too much space and demanding I leave or I'd be zapped, it would be easy to say "Villain. Evil villain." But when some joker dressed as an ordinary citizen does it, the situation is less clear. Onlookers may be divided. And doubt may creep in when you are the one faced squarely with the issue, alone.

Sometimes just sitting there and not giving up one's space, not relinquishing one's place in the world is an act of heroism. That doesn't make having a cup of coffee heroic, but perhaps insisting on one's right to do so sometimes is.

Superman isn't real. If he was, he'd swoop down to save the day when these things happen. He'd take the joker by the scruff of his neck and haul him away and the manager of Starbucks would say "Of course you can sit anywhere you'd like. It's our fault for not arranging the tables properly." Yeah right.

Being rescued by a super hero isn't going to happen. There won't be any dramatic heroics, no cinematic moments and sometimes the role of villain is ascribed to the person who is just trying to stand for something. You can go from being a hero for doing everyday things to being a villain for insisting on doing them when it's inconvenient for others or crowded.

We all have to define what it is that we'll stand for. I see other bloggers do this every day in their posts when they talk about making decisions as to which "battles to fight", which situations to address, and when to just let go of things to conserve energy. It's not easy. It takes courage, a quiet form of strength that comes from inside. There's no audience to applaud, no hero worship that goes on for this true form of heroism.

Ironic, isn't it? Because the very next day after you stand up for something you believe in, someone will call you a hero for simply being out.

Put on hold by 911 when your bed's on fire?

Brenda Orr, a woman with a disability unable to get out of a bed that was on fire, called 911 for help. However, she was put on hold. Here's the 911 transcript. The second 911 operator urged her to get out of the house, but time went by as the bed continued to burn.

This happened in Doylestown , PA and is being investigated, although initially they are saying retraining is what is necessary. The lack of training shows in the actual transcript near the end where the 911 worker says the woman "won't get out of the house...she says she's disabled" when in actuality Brenda, who had MS, could not get out of the burning bed, much less the house. The inadequately trained 911 operator didn't think of that as a possibility. When I listened to the tape I heard the 911 operator say it sounded like the caller was trying to put out the fire in the bed - this happens toward the end of the tape, when Orr is no longer able to respond.

You really have to listen to the call which is linked in this article to see how it all happened. No one responded to her saying that her bed was on fire. Instead the caller was put on hold, even after she said she couldn't hold, that it was an emergency and her bed was on fire. Orr even gave her address before she was put on hold. And even though she continually said her bed was on fire and it was an emergency, she waited 54 seconds to get a second operator, who did not respond by calling for help until 2 minutes, 7 seconds after Orr called.

A memo issued after the incident states:

"“While this almost one-minute delay may not have changed the outcome of this incident, we will never know if a rescue of Brenda Orr could have been effected if there was not a delay. In 40 seconds a fireman or police officer probably could have searched and exited the entire home. Could this have been long enough to make a difference?..This issue needs to be addressed and resolved with the Bucks County 911 Center.”

Orr had a habit of smoking in bed, according to her friends, and may have taken a sleeping pill that night. By the time firefighters arrived, they were unable to fully enter the house because the fire was so widespread. Orr's body was found at the side of the bed in a kneeling position by firefighters.

There appears to be an issue about how many times the phone rang before it was initially answered at 911, as well as the overall response time. 27 seconds went by and the phone rings continually , which you can hear in the taped recording above, before it's initially answered.

Don't stare so romantically!

In one of his first plays, Brecht famously put up signs that said "Glotzt nicht so romantisch!" ("Don't stare so romantically!") He always wanted to get the audience to look at theater more critically, rather than gaze upon it as an illusion.

Interestingly enough, I saw the following quote by him in an article about political theology that I was reading yesterday.

We who wished to prepare the soil for kindness
could not be kind ourselves.
But you, when at last it will come to pass that man
is a helper to man,
remember us with forbearance.

And so, as I watch the political machinations that go on this week, I'm reminded of the importance not only of the virtue of kindness, but Brecht's admonition to gaze without illusion upon the proceedings. We need to learn to do both.

Much of what goes on in the political forum makes great theater, I suppose, if you can set aside your concern for the country. I have trouble doing that, because we face so many issues right now. I don't think we're in a position where we as citizens can act like casual theater-goers, blinded by the illusions of a play on a stage - or interested in its entertainment value. It's time to look at things more critically, to seek out what a candidates' bottom line policies will be as much as we can ferret out in the system we have, one that seems to lend itself better at times to theatrics and histrionics than solving problems.

One only has to watch Congress for a few hours to learn this. Any school child will tell you so, if you don't want to admit it yourself.

"What are you watching?" my nephew asked one day when I had the Senate on.

"Congress," I replied. "They're discussing laws."

"Oh," he said, ruffling around his math homework. "I thought it was a play."

From the mouths of babes. Babes who aren't staring romantically.

Brecht was right. It's time for more audience involvement. We need to interact with the players in our government more, despite the appearance that 'they have the stage'. It's illusory. They are our mouthpieces, if we let them know what we think.

And, at the same time, we all need to shoulder more of a responsibility to be kinder when we can to each other.

Aren't we responsible to prepare the soil of kindness for our children? If not us, then who?

Finally! A page turner for the rest of us...

If you've been waiting, as I have, for an automatic page turner that doesn't cost thousands of dollars, in September 2008 watch out for the PageFlip, a device that will sell for approximately $299.

Yesterday after yet another day of struggling to get through piles of papers with a headpointer, duct tape and whatever else I can muster up, I went looking to see if the 5000 dollar GEWA was perhaps on sale (a blue light special in a Walmart perhaps? Odd Lot picking up a few extras?) Ok so I'm a dreamer. I did find the less expensive ($3600 or so oh boy) Flip Automatic Page Turner. ( I'll share the least expensive price I found in case one of you is interested.)

When I told Meredith what that one cost, she just sighed. I sighed too and asked her to flip through some pages for me.

This morning I decided - let me google Flip Automatic Page Turner again and since the name is similar arrived at the PageFlip site. Finding that it's funded through a grant to make assistive technology affordable for people with disabilities and 'avid readers' (a chronic condition!), and knowing I have both, I thought - voila.

September 2008. In the meantime, the specs are here. For more information on the history of page turning devices, click here.

Take the stairs?

Two of the bloggers I visit often are dealing with broken elevators and lack of access issues, unable to get out. Here it means a job in jeopardy and not able to go caucus and here where Elizabeth was crawling over nails.

Having been stuck inside over the years for various reasons such as no ramp, broken elevators and (my personal favorite) no wheelchair to use, I write often about mobility advocacy. (See my label mobility for more.) I have to get back to work.

But do go read about what broken elevators do to real peoples' lives at the links I put up. Because what we all need to get through our heads is that people with disabilities do have lives that require mobility. Until the erroneous assumption that mobility is a privilege and not a right is done away with, these situations are not going to change or improve.

New device generates power from knee movement

I was reading about a knee brace that generates power as a person walks, which can be used to charge a cell phone and has possible applications for prosthetic limbs. It's all over the news, and there's a picture which I'll be happy to find a link for tomorrow. They did say that the prototype is larger than they would like. So they have to work on that.

I was thinking about how useful it would be to have a source of power that could regenerate my power chair, as it went along. For some reason I'm getting images of my cat running a treadmill alongside my chair. Considering his nap time to work ratio, I'm not very optimistic about that as the power source.

UPDATE: Here's a link to an article and photo.

And I also found this post talking about the Flash's Cosmic Treadmill, a time travel device that you use by running on a treadmill. I love it when the scifi images from the past crop up in new technology.

How We Vote

Photos from the NY Times series of voters' experiences on Super Tuesday were put up, including some by people with disabilities. Disability Studies Temple U has gathered a number of those photos on its blog. One simply shows a staircase with a sign pointing up the stairs toward the voting area, while another shows a sign with a bell underneath indicating people with disabilities should ring for assistance. A picture speaks a thousand words.

Dueling demos-the software that ate my story

There is something about trying out new software and equipment that really tires me out. It's probably the learning curve, and also the fact that I keep getting interrupted when I'm trying to find time to do it. My job. Oh that.

The other day I wrote a story for A Different Light on a demo piece of software only to find out that I couldn't cut and paste it onto my blog. I told myself that I could use this as an opportunity to practice with another piece of equipment as I transferred the story.

Didn't happen. Work has been busy, and although I really intended to do all of that, the truth is that it's after midnight as I write this post and I'm still not done with other things that have a much higher priority.

The good news is that the story is safe and sound where it is. I don't know how long it will be before I get around to dictating it into my other blog, but I'm sure I'll find the time eventually. The only problem with the story is that I've been reading a book by Dean Koontz and I found myself coming up with a character that wanted to do sinister things. I toned it down a bit, but it's probably just as well that this story is going to sit for a while-at least until I finish the Koontz novel. Maybe I'll read the romance novel, the national Library for the blind sent me by accident (they transposed the numbers when I ordered).

Nah.

For parents: My cerebral palsy

David at Growing Up with a Disability posts information for parents of children with disabilities, answering questions about things like school, medical issues, fitting in with peers and decisions his parents and now he makes about living with a disability

He writes:

I have decided to share a little about my cerebral palsy because I see that parents of young children with CP have so many questions. I had been reluctant to share too much personal information, because I don't want it to detract from what's really important - namely, that people are people, disability is part of human diversity, and that I think loving your child is the most important thing you can do as a parent. Working to reduce the societal barriers to inclusion and respect comes second. I know that the parents whose blogs I check out now and then get that. So, this is for you parents. I hope it helps in some way.

Don't miss this post - it's quite extraordinary in its scope and will definitely teach you something if you take a moment to read it.

Saving money on cable TV - without losing anything

Did you know that cable companies offer limited basic service?    Some cable companies must not tell customers about it because I've talked to a lot of folks who don't know anything at all about it.

Since I don't watch much TV (like many other people these days), I downgraded to  limited basic service and shaved a lot of  dollars  off of my bill. What do I get now? With limited basic,  I still get channels 1 through 11, PBS, a few shopping channels, WGN, and CNBC.  

So what channels do I miss? Very few.  I did miss some sports and news channels, like CNN, MSNBC and ESPN. So I went hunting for free alternatives online. Here's what I found.

*ESPN 360 is available free for some folks (depending on your provider). It offers six simultaneous screens that play various sporting events, with live and replay viewings available. When the Australian Open was on, I could watch six courts at once. If you can't access that, try going to news sites in their video section for sports highlights.  Magazines like Sports Illustrated also have online sites with articles and videos. And, of course, there are many sports blogs for your favorite teams.

*For up to the date news, CNN has a free live news feed that works very well with a  plug in. Of course all the news stations offer videos now, many with players where you can set up a playlist or  choose to watch the most popular ones of the day and this is relatively hands free and effortless. 

*Free video podcasts. You can find podcasts for news, sports, comedy, books, films, and lectures. Some universities are now podcasting students' films, guest speaker appearances and events- free.

Considering the fact that I've discovered all of this for free online (that can be watched 'on demand'), I'm actually happier with my viewing options now. Less is more.  

Kind of makes me wonder why I was paying all that extra money. 

And, of course, there's Hulu to watch - which lets me do cool things like embed their videos, like this Super Bowl commercial.

Multimedia Lenten resources

...are offered by the USCCB if you click here.

Blooper Tuesday

So the other day I'm watching TV and I see Mrs. Obama leading Stevie Wonder up a flight of steps to a stage by the hand and I'm thinking "Gee he could fall" and suddenly he does trip and fall down and I'm thinking I hope he's not hurt. However he gets up and in my head I hear the words "There goes the disabled vote"  and I'm  watching Oprah and Caroline Kennedy, the celebs du jour,  up on the stage watching as Stevie approaches, apparently still ambulatory. He's even beginning to grin a little.  

This is why disability platforms in writing are different than disability platforms in real life. 

Of course when I talked to a blind friend of mine after I saw it, she wondered why Stevie doesn't use a guide dog or a cane (perhaps he does at times?) but I noticed he had an assistant with him who was behind him (unfortunately) and I guess what happened is Mrs. Obama offered to assist him but didn't understand what he needed. Maybe Stevie assumed she knew what he needed.

That can be a dangerous assumption.  

Of course people with disabilities are a resilient bunch. We've been dropped before, misled before, and even though the dramatic aspect of possibly taking out Stevie Wonder is all part of the blooper clips that come from primary election madness, there's one thing I know.

Being let down hurts. So vote carefully and wisely today if you haven't already. Don't assume. Anything. We live in a society where we pass legislation like the ADA, then we need another piece of legislation like the ADA Restoration Act seventeen years later.  It's a tricky thing, living with a disability in this political environment. You may not find a candidate with whom you agree with everything. I haven't.  All I know is that there are lots of gaps in the system, lots of issues that need improvement quickly, lots of us struggling no matter what our circumstances and no matter how many times we get up from falling down and grin.  And I want someone who can and will  work toward improvement for the issues that affect people with disabilities. The time is now.

All I can say is that Hillary Clinton understood that a quadriplegic couldn't shake hands. I can't tell you how rare that is in my experience. Oh  -experience.  That.

And since many of us still can't get inside ours,  I find it ironic that the NY Times is running a piece called "Photograph Your Polling Place" where they encourage voters to photograph their local polling places. 

So I submit this photo instead.

[visual description: Stevie Wonder falls down on a flight of steps while holding Mrs. Obama's hand at a rally. Behind Stevie is his assistant trying to stop his fall.]

[visual description: A wheelchair is shown facing a flight of steps with lack of access.]

Of chicken wings and a quarterback's resolve

If you're from the tristate area, you can really appreciate how Giants fans feel this morning. I actually wore a Giants jacket for years so I qualify as a real, true fan, not some "Oh now that they're in the Super Bowl I love the Giants" fan.

At my house our menu consisted of :

wings of a chicken
celery
blue cheese sauce
milano cookies
repeat

and my friend and I managed somehow to give each other a quad modified high five, thus passing along the equivalent of a germy double dip, , every time the Giants scored. Which, let's face it, wasn't much, since it was such a low scoring game.

As usual, as Giants fans we were elated and then faced with an incredible test of faith toward the end of the game when the Patriots finally scored and began an early (and premature) celebration. Four points ahead - why couldn't it be three? Who were the true believers? Were the folks with wing sauce and milano cookie bits all over their faces really die hard fans?

Yes we were. "Go Giants," my friend kept saying.

The room became quiet. My cat sauntered from my lap to my friend's purring, kneading us with his paws, unaware of the magnitude of the situation. The piles of bones from the wings of a chicken lay on a tray. Were we on the chopping block? Visions of chickens began to dance through my head.

No, no we vowed, it wasn't over. And we watched as Eli Manning took the field, David vs Goliath, his firing arm ready, his concentration steady, his resolve true. And when faced with no receivers, he ran with the ball, falling gracefully into a tuck in the nip of time, protecting himself as we groaned "Don't get hurt Eli!" 

Eli got up every time, wiped the sweat off his brow, winked at us (okay I made that up), then headed down the field again, hitting receivers, marching them down the field until - touchdown!! Another high five between us, shouting, jubilation - and New Yorkers (whether they live in NY or not) began a celebration that will include a parade on Super Tuesday (good timing NOT but hey it's New York they love crowds!)

Yes, we did it. We won the Super Bowl and whether you're a faux Giants fan or a for real Giants fan, I'll tell you the real fans last night know that the game was won because we believe that you don't need the wings of an eagle to soar. Even underdogs can taste victory because underestimating one's opponent is never ever a good strategy.

[visual description: An illustration of a chicken on a chopping block. ]
[visual description: Eli Manning is shown after the Super Bowl holding up the Lombardi trophy and thanking us personally for our support. Well not really. But he looks very happy. Terry Bradshaw is standing next to Eli, staring at the ground, which he's been doing since, uh, appearing. in Failure to Launch.]

Come to the Table: A Catholic Passover Seder for Holy Week

Come to the Table: A Catholic Passover Seder for Holy Week by Meredith Gould, Ph.D. invites Christians to appreciate more fully the Last Seder where Jesus established the Eucharist as a sacrament.

A traditional Jewish seder adapted for home and parish use, The book Come to the Table includes:

Hebrew prayers in English.
Easy-to-follow instructions for conducting the seder.
Details about Passover symbols and their significance relative to the sacraments, with citations to Hebrew and Christian scripture.
Extensive commentary about historical tensions between Christians and Jews, and conditions for reconciliation.
Guidelines for preparing traditional Passover fare and setting the holiday table.

This book is an indispensable guide to interfaith families during Passover and Holy Week, as well as for anyone who seeks a fuller understanding of these traditions and their roots. The book is available for purchase at amazon.com as well as  on the author's site. 

On her blog, Meredith Gould writes:

"Years ago, I decided to create a seder that would reveal Judaism's legacy to Catholics by highlighting the symbolic (and liturgical) similarities of our faiths. I also wanted Catholics to better understand the history of Jewish-Catholic tensions and to appreciate the challenges of reconciliation. And, I wanted to make all this available in a book that provided practical instructions for creating a seder in either a parish or home setting. Not too ambitious, eh?"

To read more about this book by the author, click here.

You Make the World A Better Place Award

Last night I found out that I've received a blogging award from Elena over at My Domestic Church (thank you!) I'm going to award this to five bloggers.

There are only 3 simple rules to follow.

use Ukok’s ‘You make the world a better place’ image in your post.
link to Ukok’s Place.
Award 5 bloggers.

So here's my list of five bloggers who get this award - and why:

Katja at broken clay (Katja has helped me so many times with feedback and her experiences that I can't count them! and she does it for others as well - thank you)

Blue Girl in a Red State (whose writing makes me think, makes me laugh and most importantly, touches my heart)

Simi Linton over at Disability Culture Watch (whose seminal writings have made the world a better place)

dirty butter over at her blog (dirty butter not only blogs about parkinson's disease and peripheral neuropathy, networking to help others, but started Blog Village to get the word out about other blogs. one of my favorite folks in the blogosphere!)

cause of our joy (for her work on behalf of children and babies with Down Syndrome)

[visual description: White flowers are shown on a black background. In the upper right corner are the words You Make the World a Better Place.]

Formerly known as Quadragesima....

Lent.

From Wikipedia:

"In the English language, Lent was formerly referred to by the Latin term quadragesima (translation of the original Greek tessarakoste, the "fortieth day" before Easter). This nomenclature is preserved in Romance, Slavic and Celtic languages (for example, Spanish cuaresma, Portuguese quaresma, French carême, Italian quaresima, Croatian korizma, Irish Carghas, and Welsh C(a)rawys).
In the late Middle Ages, as sermons began to be given in the vernacular instead of Latin, the English word lent was adopted."

As we approach Ash Wednesday (following Superbowl Sunday and Super Tuesday), I'm reminded of my childhood quest to find the absolute best thing to give up for Lent. Some of the things I tried to give up as a kid that never flew with the adults around me were:

baby sitting my brother and sister
doing chores
doing homework
cleaning my room

Well you get the idea. As I recall, this was a fairly common attempt ("Good try!" was the usual response) among my Catholic schoolmates.

Over the years, I've learned to discern that "giving up things for Lent" is more about a renewal of my commitment to a way of life, rather than about the things I do or do not give up. (Another meaning of Lent comes from the word 'spring'). And part of the process for me is acknowledging my gratitude for what God does for me and the people He's placed in my life.

God makes these things so easy for me. You'll see why I say that in a moment. This morning I received an email from a friend who offered to come over and fix my front door so I can get in and out more easily and work on my recalcitrant computer. Then I got a call from another friend who is making me a custom wheelchair bag for the power chair. After that a third friend stopped by to leave off chicken wings for our Super Bowl get together later. And then there's Meredith.

Thank you all for being part of my process. It makes it very easy for me to do the not as easy task of giving up those things that are blocking my spirituality and my peace, those things that interfere with my prayer life and my ability to serve others or be present to their needs when I see how much has been given to me, how much love is shown to me. How dare I balk at giving up those things that block my connectedness to God? And yet it is still a struggle to get started on this Lenten journey every year.

This year I have a list of several things I am giving up for Lent, a list that is written in my heart if not on my blog.

Extreme Eugenics in the House of Lords

Led by   Molly Baroness Meacher, who told the Lords that children born with severe disabilities are "not viable people".

"The comments came as the Lords debated an amendment to the Human Fertilisation and Embryology Bill, put forward by Lady Swinton, Baroness Masham of Ilton, that would have protected unborn disabled children from abortion after the 24 week gestational time limit. The amendment was defeated by 89 votes to 22.

Under Britain's abortion law, children judged to have some form of disability, including such comparatively minor disabilities as club foot or cleft palate, can be aborted up to the time of natural birth." via lifesite.net

Close Encounters of the Pedestrian Kind

Yesterday I spoke with my friend Sue and mentioned to her how many bicyclists I ran into yesterday who are riding on the sidewalk now. She was telling me that there have been a few fatalities as a result of motor vehicle violations of pedestrian laws, and more bike riders are using the sidewalks. And a few of them, she said, seem to be rather angry that they have to share the sidewalk with her because it slows them down. 

Sue told me that she's been out with her guide dog Wonder when  bicyclists come up behind her on the sidewalk - or around her -and she doesn't hear them.  A few have been rude to her . "I can't hear them coming up behind me, " she told me. "They just keep telling me to get out of their way." She's been bumped into, jostled and disoriented by their behavior - and then they ride off.

It's not illegal where I live for people to ride their bikes on the sidewalk (except in certain towns where it's posted.) But still - sidewalks are for pedestrians. When people choose to use a bicycle on the sidewalks, they have to take into account that they're sharing it with  pedestrians on foot,  in wheelchairs, using guide dogs and  slow walkers. Slowing down for other pedestrians is a reality of sharing the sidewalk safely.

On my way home yesterday (right before I spoke to Sue to hear her story) I was behind a woman with arthritis who was walking slowly along. I saw an adult bicyclist careen around her at a high speed. She reached out and clung to a fence near her and as I approached said to me "My balance isn't good and I just had this guy on a bike scare me so badly." I stayed with her for a while until she was more sure of her bearings, but incidents like this can result in serious injuries.

Disabling theologies: Having a disability is not a punishment from God

Last night, a Christian acquaintance of mine was talking about losing an item that was worth hundreds of dollars. There was a clear, logical reason that she lost it, part of which was carelessness, but aside from that, the interesting thing about it is that she saw it as a lesson from God and told me "Sometimes God takes things away from us." Then she added, "Well you know all about that."

"What do you mean?" I asked.

Then she sort of stuttered around a bit before basically saying that she was talking about what happened to me when I acquired my disability.

What she was saying comes from a disabling theology based on the  erroneous belief that God is somehow punishing people when they have disabilities. Having a disability or living with a disability is not a punishment. Sometimes, I've found, when people struggle to find meaning in the meaningless, to make sense of things they seek to blame someone. This can lead to a very fear-based belief that disability is the result of punishment in conjunction with a belief that living with a disability is some awful, terrible thing.

So here's my take on being told that God took something away from me.

Today is a beautiful sunny day and it's a Saturday. I have a day planned just like everyone else, and perhaps because I will do those activities in a wheelchair, some people just see that and don't see past it to realize that my life is just like theirs. I wake up, brush my teeth, have breakfast, make plans on weekends, and do all the same things everyone else does who doesn't have a disability. I have a few books I'm reading, a few friends I need to call, a few pieces of work to catch up on.

It's easy enough to say that I know sometimes people still say this kind of thing because I hear friends with disabilities tell me they've heard things like this too, but when confronted with it, it's disturbingly dysfunctional. I can't help but wonder how many people these kinds of statements have chased away from churches. It's like being prayed upon.

Waxing Brilliant

I would like the angels of Heaven to be among us. I would like an abundance of peace. I would like full vessels of charity. I would like rich treasures of mercy. I would like cheerfulness to preside over all.
– St. Brigid of Ireland

When I went to Catholic elementary school, I was taught by nuns from Ireland. Most had a thick brogue, watered down a bit from living in the States. And they told us how different life for them was in Ireland. The nuns experienced culture shock living in an American suburb and seeing how their students' lives differed so much from their own childhoods. Once in a while, one of the nuns would ask us questions such as "Do you really watch TV while you do your homework? How do you expect to concentrate?" and then add sternly "Turn that box off! It won't get you into college." Yes, we were all going to college, girls included.

Because, you see, each student was precious to the nuns. Each one of us had potential. They believed in us. And whenever we managed to write our best, figure out the thorny math problem or give a good speech, the nuns had us thinking we were waxing brilliant.

"See? You are smarter than you believe," the nuns would say quietly. There was no handing out of saints medals or scapulars, no award that was tangible, but the accolades bestowed upon the prized student of the day was far more of a treasure than that. They gave us the gift of confidence in our ability to learn, a lifelong prize.

Of course a classroom of geniuses just doesn't happen so I can't ascribe all of this to the talents of their students. What I do ascribe it to are the words of St. Brigid above, that I heard often during my childhood and saw online this morning. Teaching that includes charity, mercy, peace and cheerfulness can only serve to enhance and build up, not tear down, a student's confidence. How often when I hear parents of children with disabilities tell me of some of their children's struggles that I wish I could bring back one of my teachers! And how I wish that children all over the world, even in the poorest places where they struggle to eat, could receive the gift of education. [ A Jesuit talks about his time in Kenya. (For a video at Monastic Musings, click here.)]


{Food for the Poor Inc. is a Christian organization that is rated here.]

Absentee ballot voters

If you already voted for a presidential candidate who has now dropped out of the race and the primary election still hasn't taken place (e.g. Super Tuesday), in some places you can apply for a new ballot. Call your county clerk to check it out.

One of the downsides of so many voters with disabilities having to use absentee ballots due to lack of access in voting places are situations like this. It's time to make voting accessible so our votes count equally.

The Excellent Award

[visual description: A very LARGE graphic that I could not get smaller, that has the letter E in black on a background of white tilted on its axis facing right. Above it is the word Excellent. Below it is the phrase This blog is rated E for excellent.]

I've been given the Excellent Award for my blog from Maryellen over at Grandma's Musings. I'd like to thank her and  since I think these awards are a fun way to find new and interesting blogs, will nominate more than ten. If you're nominated please don't feel you have to accept the award - I'm nominating a few extra since I know some of the nominees don't generally post awards on their blogs. 

So in the spirit of providing readers with new blogs to explore, it's a win-win for me to just give  a longer list. Anyway, here's the rules:

By accepting this Excellent Blog Award, you have to award it to 10 more people whose blogs you find Excellent Award worthy. You can give it to as many people as you want-even those that have received it already, but please award at least 10 people.
 

Historical Christian: Musings of a Roman Catholic Convert

Monastic Musings

Rolling Rains Report

Disability Studies, Temple U

Pitt Rehab

In All Things (Editorial blog of America Magazine)

More Meredith Gould

Blog [with]tv 

Planet of the Blind

Wheelchair Dancer

Dream Mom

Just Another Day of Catholic Pondering

Arthritic Young Thing

The Gimp Parade

Growing up with a Disability

Pause for Prayer

Disabled Soapbox