Wednesday, April 30, 2008

Don't Enable An Ableist:BADD 2008

Ableism hurts. It can be subtle, like when a customer behind me assumes because I'm in a wheelchair that I can't be in line by myself, or like a sledgehammer, when someone assaults you because you're paralyzed and can't fight back. It can result in discrimination in housing and employment. Ableist attitudes are behind the resistance to providing access to people with disabilities and other social changes that would result in fuller inclusion of us in society.

When some people do or say ableist things, there are those who enable them in various ways. Sometimes it's even the person with a disability, when we apologize to an ableist who treats us badly and insists on us backing down from our position. I have a term for it: enableists.

It can sound like this.

"You just refused to show me an apartment because I have a disability?"

"Absolutely. I don't need the hassle," says the ableist landlord, openly breaking the law.

Upon hearing this, a typical enableist will chime in with "Well, you can't expect Mr./Mrs Ableist to want a tenant with a disability. It does present problems" or "Maybe you should just look at another apartment " or if you point out that kind of discrimination is illegal, an enableist will say "You can't expect other people to know all about disability stuff." (Oh yeah, those silly anti-discrimination laws!)

Yes, enableists continue to enable some ableists to say they don't want to make an accommodation or serve a customer with a disability. And when the ableists offer an excuse, the enableist inevitably helps them come up with more. The enableist seems to jump into the fray to calm the ableist down. Yes, yes by all means, let's keep the status quo. Why should the ableist change, they ask the person with a disability?

Enabling an ableist is just as wrong as being an ableist. It encourages them. It not only makes excuses for them, but it gives them an out and solidifies their sense of entitlement, as if it's okay for them to discriminate against a whole group of people. Enabling ableists sends them a message that it's optional and up to them whether they deal with their ableist attitudes and ways - without facing consequences.

A sure sign that you're dealing with an enableist is that you are left feeling as if you've done something wrong after you've asserted your rights in a reasonable way. And yet, as the chorus of ableist-enableist-ableist-enableist goes on, our voices as people with disabilities seem to get lost in the fray. It's as if a sideshow is going on, completely tangential to the fact that we can't use a restroom, for example, that is All About the Ableist. Poor ableist, the enableist says, as we roll down three blocks in the wintry cold to use an accessible bathroom. This accommodation would cost so much. Why are you asking him/her to do that? Why are you making such a big deal out of it? Poor ableist, says the enableist, after he/she embarrasses us with an inappropriate ableist remark at a social function. Why did you have to point that out?

I guess the answer is: because those of us who do aren't enableists.

{written for Blogging Against Disablism Day 2008}

Treating Ableists Under The Medical Model...

Disease: Ableism

Who can get it: Anyone, even those who have a disability, if they internalize negative beliefs about it

Common symptoms: Using stereotypes and labels about disability; calling people with disabilities derogatory names; excluding people with disabilities; exploiting people with disabilities; applying negative assumptions about disability in one's daily affairs

Course of treatment: Some ableists may benefit from being around people with disabilities and learning that they are not any different than able bodied people. However, this does not work with everyone.

Complications: Ableism may be accompanied by racism, sexism, and other intolerant behaviors or rigid and inflexible thinking patterns. In such a case, the usual course of treatment has a fairly low success rate.

Effects of disease: Although not fatal, ableism limits and restricts the sufferer's lifestyle, relationships and quality of life. It also affects those who come into contact with the ableist in negative ways, particularly those with disabilities. Although ableism isn't inherited, exposure to it may harm an ableist's children by skewing their attitude toward people with disabilities and increasing their chances of acquiring the disease - therefore it is, unlike a disability, contagious to some degree.

Research: The rather famous Anti-Ableism Antidote Experiment, conducted in the basement of an unnamed Independent Living Center, showed that some ableists improve more rapidly with the use of a placebo "Anti-Ableism" pill that should be taken whenever they leave the house to ward off episodes of ableism. The findings confirmed that 30% of those who took the sugar pill improved over a period of six weeks. However, one gentleman who broke both legs during the six week period improved when he had to crawl into the basement on a daily basis to get the pill since there was no ramp. The scientists concluded that the latter condition taught some empathy to the ableist who initially thought that people who want access have "a sense of entitlement" and did not attribute his improvement to the placebo.

Prognosis: Varies depending on the willingness of the patient to face his/her ableism.

Research papers from other fields:

The Elephant in the Room or The Ableist in the Handicapped Stall
, Journal of Restroom Management, Issue 123, Summer 2001
Linking Ableism to A Tiny Gene in the Nasal Cavity: Does Induced 24 Hour Sneezing Help?, Journal of Nasal Cavity Studies, Issue 1, Fall 1999
Ableism At Work: It Doesn't Work, Journal of Employment Mismanagement, Issue 7, Winter 2006
Disabling the Ableist: Why Token Simulations of Disability for Five Minutes Fail , Journal of Abnormal Ableism, Issue 3, Spring Forward
Why Ableists Argue Against the ADA, Journal of Articles with Lots of A's in the Title, Issue 3, Fall 2003
You Don't Really Need That Wheelchair, Do You: 101 Ways to Deny Essential Medical Equipment to People With Disabilities, Journal of Ableism, Issue 9, Summer 2006

[submitted to Blogging Against Disablism Day 2008]

Docking your wheelchair

Based on technology used to dock a spaceship, this new wheelchair accessible van design uses laser technology to load your chair onto a lift on the back after you, uh, disembark. A video description would be that the van seat lowers, you transfer into the vehicle, then the power chair is remotely guided toward the rear of the van where a lift descends. Laser lights on the arms of the chair then guide the chair onto the lift (something inventors says was too difficult to do remotely), the lift goes up and - voila- you and your chair are aboard. Liftoff!

Well all kidding aside it is less pricey than current setups, so check it out. The figure I heard was 30 grand. So it depends what you buy - however here's what is new and great about it: the equipment can be transferred to a new vehicle. Developed by New Scientist, if you're looking for more info or check out a post at Gizmodo where I caught onto this video.

More scifi stuff for the day: what do astronauts falling from the sky have to do with nomads in Central Asia?

h/t gizmodo

The gift of spiritual generosity

Over the years, I've learned a great deal about spiritual generosity. There have been times that I've received this gift from others and times when I've passed it on to those in need. Many in my life have taught me a great deal about it.

Spiritual generosity is not something that can be quantified. It's not about what you give, but often about how you give. For example, I woke up this morning to the gift of spiritual generosity from a nurse who thanked me for asking her a favor. She thanked me. It is the how we treat each other part of giving.

It's that spirit of mutual respect and Christ's love as brothers and sisters that we honor when we are generous to each other in a spiritual way. We are in this together is the message. We honor our vulnerabilities and our strengths when we do that, because the reality is that at any time any of us may need. What about those folks in Virginia who lost their homes this week in tornadoes? None of those people thought at the beginning of this week that they would have the kind of needs they have now. Being human, we are "at risk" of needing. It's part of the gig.

And how we can change each others' lives when we choose to be spiritually generous in ways we can be, right where we are. It doesn't have to be a grand gesture. It's certainly not about money all the time, as it seems we've been taught. Sometimes it's our time or a service - a favor, a kind word, a presence.

One of my friends who has CP goes to the local supermarket on his scooter. If he sees an elderly customer struggling to read items, he offers to help. Takes a minute, but shows he knows about spiritual generosity. And I point that out because any of us can be spiritually generous and too often we think of people with disabilities as only being recipients, not the giver.

But I also know the other side of spiritual generosity: being the recipient. Spiritual generosity is very different than charity. Charity diminishes the recipient by objectifying him or her and lumping pity on top. Spiritual generosity is about the act of giving in a mutual gesture of respect and love. We all do that with our friends and loved ones. We give unexpected gifts to those we love. And we can do it with others, too.

Spiritual generosity in its true form engenders not only a sense of gratitude in many recipients, but can transform them into being givers as well.

Therein lies the hope and solution for all of us. Spiritual generosity would solve almost any of the problems we face as a country that resound around us daily, problems that may seem as if they will never be solved.

Tuesday, April 29, 2008

May Day! May Day!

Well not really but now that I have your attention:

Blogging Against Disablism Day is May 1st, 2008. What is it, some may ask?

Blogging Against Disablism Day is an annual event in which disabled and non-disabled bloggers throughout the world unite in the cause of equality. On May 1st, bloggers shall write about their experiences, observations and thoughts about disability discrimination (disablism, sometimes ableism) and what we might do about it.

Join us. Spread the word, go on over and leave a comment at Diary of A Goldfish that you'll be participating..don't miss it.

Blogging Against Disablism Day, May 1st 2008

The car that can't get wet

Imagine this scene at a car dealership as you're signing your papers to close the deal:

Salesman: Okay now this is your warranty and owner's manual. Read it over and let me know if you have any questions.
Customer: Wait a minute. It says here that I can't get the car wet? Does that mean I can't use it in the rain?
Salesman: Wellll, to be safe, you really shouldn't get it wet. See what it says there? Avoid rain.
Customer: Avoid rain? It says that it's built to withstand getting it out of a sudden rain but that if it gets wet, I have to let it sit for 24 hours and call a technician if it does anything - erratic. What does that mean?
Salesman: What it says, sir. You know, like going backwards instead of forwards. Or not starting.
Customer: You mean it can break down if it gets wet? How am I going to go to work? What if I get stranded somewhere? How can you get away with selling a car like this?
Salesman: They're all made like that now, sir. It's just the way it is. Listen, if there's any problem, just call us and we'll send a technician out. Of course, it's not covered. You'll have to pay that out of pocket.

I offer the above scenario as an idea of how people would react if they were told when spending that kind of money that they couldn't use their mobility device (i.e. a car) to go out when it rained. Yet power chairs have been made this way for years. The power chair I have goes for around 10,000 dollars - a price that you can easily get a car for. And its owner's manual has a warning that if it starts to rain, I better find shelter quickly because this sucker isn't built to withstand being out in the rain.

There is a power chair made by a company overseas that apparently uses a seal of some kind to make it waterproof, but the price is exorbitant. So apparently the technology exists, although the price of that chair is even higher.

The question remains: why does a piece of mobility equipment that costs that amount of money still have a design that prevents it from being used outside? (Before anyone tells me you can throw a poncho over yourself and your chair, let me just say that my vendor says then I'm taking my chances - and so does my manual. It's on me if the chair breaks (i.e. the electronic equipment or batteries have to be replaced/repaired) and, since insurance doesn't cover that, I'm out of pocket if it does. So basically I'm taking a risk by doing that, which shifts the whole scenario to me as a consumer. And you when you do that, which a lot of people do because they have to go out in the rain.)

Now Abledata offers the following advice: Avoid RAIN and SNOW which are especially hazardous to power wheelchair users, and to their expensive equipment. Try to stay out of falling rain or snow; try to stay off wet, slippery surfaces coated with rain or snow. If you have to travel in rain or snow, use a wheelchair van, door to door.

Where are our rights as consumers of mobility products? Yeah, hand someone their car keys and say "Try to stay out of falling rain or snow, try to stay off wet, slippery surfaces coated with rain or snow."

I guess I'm supposed to go out and buy a really expensive accessible vehicle to transport this power chair. Now who does that benefit? Yet another mobility product dealer. Not the consumer. So please - let's think carefully before putting that additional cost on those of us who are just trying to afford the wheelchair itself. Mass transit? Well, uh, yeah but what about waiting for it in the - rain? And it doesn't go door to door.

If they tried to pawn off cars (mobility devices) to people that couldn't get wet, there would be an uproar. And I suggest to you this radical idea: a car, as important as it is to a person's mobility, is less important than a wheelchair is to a person's mobility.

So why, oh why, can power chairs still not get wet? Or - let's put it this way - if they do, why is that the consumer's problem? We need to raise our expectations about our mobility products. Because, after all, we need to - and should - be able to use it for mobility.

Monday, April 28, 2008

The Orphanage (2007): Movie Review

If you like horror movies, watch this. It's too scary for me to even put up the trailer on my site.

The Orphanage is a foreign horror film with subtitles, about a former orphan who goes back to buy the orphanage building to open a school for children with disabilities. She and her doctor-husband have adopted a seven year old who is HIV positive and, as they prepare the school to bring in the other children, their son discovers that he is adopted and is HIV positive. He tells his parents his invisible friends told him this and, of course, the place is haunted.

From there the plot takes off in an exciting, thrilling and scary ride. The filming is beautiful and the acting is not only excellent, but the lead actress is very convincing in her role. This movie creates a mood and then another and yet another- drawing you into it so much that you want to leave because you're a bit afraid of what will happen- but you can't. Like the lead character, you just have to see it through to the end.

And that's what makes this movie so great: unlike the babysitter who just has to open the door or answer that phone, you can't argue with the reasons why the lead character is willing to face the scary stuff. And I can't tell you that or I'll ruin the plot. Just rent it.

The heart of education

Interesting NY Times letters to the editor on the subject of a recent criticism of US education by Herbert.

One of those responding, who teaches gifted high school students, noted that critical reasoning and thinking skills are needed, not learning facts since kids today can google what they need to know. On the other hand, some responses point out that other countries' children/teens spend far more hours on education and learning. Thought-provoking responses to a problem and issue that just isn't going to go away until we address it.

And here's my two cents. (Feel free to add yours in the comments). We need to address the disparities between school districts . As one reader notes, other social problems don't disappear in a classroom - poverty, violence, and drugs among them. Kids who are afraid to walk to school aren't going to be able to concentrate. And the trauma of seeing people shot and die changes their perception of time - the long term goal of getting a good education is not in some of their radars if they're trying to just survive.

I volunteered in a juvenile detention facility years ago out in Ypsilanti, Michigan. They asked me to teach math to the kids who were junior high and high school age- all boys. It took me three classes to get those kids (admittedly trouble makers) to just sit down. And several more classes to get any of them to stay on task. By then new kids were admitted and some of those I'd been teaching were gone. It was an atmosphere for a perpetual zoo. So I called a Catholic clergy member who was a missionary and teacher and asked her what she would do. . She told me to sing to the children and teach them - that was the way into their hearts.

I used music to teach math. I brought my guitar in and, knowing most of the kids never learned basic math, I sang fractions, addition, subtraction, multiplication. The boys who did know junior high math were given sheets to work on in the corner (which the nuns did with us if we were ahead on a subject) or asked to tutor others. The kids calmed down and sang the songs, but more importantly, their hearts did open. I couldn't believe the transformation. And they learned some basic math skills. It was the best I could do.

I know teachers in some school districts are still faced with these issues, all these years later. And more. And, no, I'm not suggesting that singing to the kids is the answer, but reaching their hearts is. What's at risk is our future- too many of our children don't have a love of learning coupled with the ability to feel safe and secure in the rest of their lives. How can they open their hearts to an education when they live in fear? No child in our country should be treated as a throwaway statistic.We just can't deal with the issue of quality education in a vacuum any more - we need to start dealing with the social problems that are interfering with access to a good education.

Sunday, April 27, 2008

UK nurses ask for patient dignity measures

8 out of 10 nurses out of a group of 2000 polled said they have left work distressed about lack of patient dignity in their facilities. They cite inadequate equipment and privacy issues where patients of both genders receive care in close proximity among their concerns.

Squirrel versus the Beast

[visual description: Photo via Ask Sister Mary Martha. It shows a squirrel baring its teeth. Small, but effective.]

Unlike my friend Elizabeth in her manual wheelchair who allows squirrels onto her lap, feeds them and seems to bring out the best in wildlife , my power chair aka the Beast and I seem to bring out the worst in wildlife. Mostly squirrels, although a few cats haven't been too happy either. Well, when are cats happy?

The other day I was, admittedly, speeding past a park when a black squirrel ran toward the Beast, stopped and bared its teeth at me. I was a bit aghast and thought immediately "What would Elizabeth do here?" realizing that perhaps she would feed it, ask it if it was hungry or tired or upset at the road construction down the street, but the longer I checked out its 'tude, the more convinced I was that the right course of action was to hit the joystick and continue on my way. No lap time for that rodent. I mean cute little thing.

I cannot work a camera so I stole a photo of an irate squirrel from Sister Mary Martha, who I think would agree with my course of action. (Mea culpa, Sister. )

That is not the only irate squirrel I've seen around here. There was one a few weeks ago when I crossed the Quad on campus (yeah I know, the quad crossing the Quad) who eyed me from atop a bench, then did a kamikaze run in front of the Beast and stopped, facing me. I had just watched Alvin and the Chipmunks and half expected the squirrel to start singing or dancing. Instead it put its little front leg up defiantly at the Beast (or me?) and then ran off. No baring of the teeth at least, just a warning. I think.

I did go back there. No little squirrel is going to keep me away.

The cats tend to be protective of their driveways. They wander up and down their territory as I approach, then go into that Halloween stance and meow or howl at me as I get on "their" sidewalk. It only lasts until I leave their yard, at which point most of them go back to napping unlike the squirrels who do I don't know what next.

Maybe they go off looking for Elizabeth. Who is racing today. Good luck to her :)

Kindle review: The Kindle as an assistive device

This isn't just your typical Kindle review because I'm a user with quadriplegia. That means I have upper extremity paralysis, which makes turning the pages on a book impossible without using a headpointer or assistive device. So my friends got together and decided that I should have a Kindle - not for the cool factor, but to see if I could read with one.

And I can. But before you run out to get one, let me describe how I use it. If you have a disability and have questions, I'll be happy to try to guide you as to whether it might work for you or not. Because, although it has great potential, the Kindle would need some tweaking before it could be sold as an assistive device and I'll explain why.

First of all, the Kindle is an ebook reader. That means its main purpose is to read books that are downloaded onto it in digital form. You download books from the amazon store or find ebooks online, some of which are available for free. (To give you an idea I have 12 books on mine and only paid for 2 - the others are on there legally and were available free in a compatible format - "prc" or "mobi-DRM free"). The books go into a Content Manager which you work by scrolling up and down your list of books via a small plastic wheel on the device, then press down on that wheel to select. If you can use a thumb you're good to go. If not, like me, you can try to use a mouthstick or other device to do this. This feature is way more difficult and frustrating than the controls that turn the pages. Turning the pages is easy - and I can even use the side of my arm- since the controls for that are very large and go down both sides of the Kindle. It's also a light touch, causing no pain in its use for me. This is a major breakthrough in technology since the Kindle is the first device, other than a computer, I've been able to use to read print on in over a decade. This is exciting because the Kindle uses E-ink which is easier on the eyes than a computer screen.

As for downloading, you can do it one of two ways. There is a USB cord that allows you to drag and drop books from your computer to the Kindle, which appears as a hard drive. Or you can use the free EVDO connection to download books wirelessly, although your connectivity may vary depending on your location. I've found the connectivity to be better when connected to the Amazon Kindle book store than the web, never once losing a connection in the Kindle store but losing a connection on the web one in four times so far, although I've only had the Kindle for five days now.

The Kindle has many features that I do not use because they are too difficult and frustrating for me. It has a search function, for example, that will let you search your Kindle content, the web and any reference book you've loaded (or a preloaded dictionary). To input characters, it has a keyboard , but it's necessarily small and a bit difficult to use with a mouthstick, depending on your level of disability. If this presents a concern to you, I don't recommend that you plan to get a Kindle to play with the other features (besides reading) . Of course if you intend to use the Kindle mostly as an ebook reader, which I do, then it's not an issue. And , for some of us who can't turn pages, buying it will still be a wise choice.

For the visually impaired, Kindle does allow you to adjust the text size and it can go to a very large size. That feature works well. It does have the ability to read books, but only in Audible format and mp3's. But it does not read text. (This is an extremely unfortunate thing since if it did have the ability to read text I could see its sales skyrocketing as not only an assistive device but a plus for seniors who would like to switch from reading text to listening to audio.) I downloaded an Audible book onto my device and it took up a great deal of the memory, however you can use a SD card with the Kindle. The controls are not only disappointingly limited for playback, including no ability to adjust speed or pitch, but are not usable unless you can see them. There is no built in auditory feedback. Although it's a nice feature to be able to put an Audible book on there, it's not something I would use the device for at this point because other devices do a much better job. (Even an iPod now has two speed settings for audio. Although that's not great, it's better than offering one playback setting which the Kindle only has. )

The Kindle also has experimental features, which have a cool and fun factor to them. There is a basic web reader. This is a frustrating experience on the whole for me since I use assistive devices to input (no voice recognition) and I lose connectivity on the web frequently. However, I have read the news on the Kindle via its web (which is free) and can adjust the text size. There is also Kindle NowNow which I tried last night. Basically you ask a question and you can get up to three answers in ten minutes from live researchers. But I'd hate to be hanging while waiting. I sent the simple question "Who has hosted Saturday Night Live the most?" at approximately 11:30 pm. EST last night and did not have an answer by 1:00 a.m. (I turned the connectivity off on the Kindle at that time when I went to bed. I was having connection problems last night so not sure how that played into all of this.) At 5:30 a.m. EST this morning I received one answer: Steve Martin (along with information from Wikipedia). So I can't tell you how the Kindle alerts you when a NowNow message comes in. The third experimental feature is playing mp3's, but those would be a memory hog so I've skipped that. I can see why some people would like to listen to music while reading however and you could put your tunes on an SD card.

One other aspect I'd like to mention are work applications for those with disabilities. You can email documents in various formats for Amazon to convert to read on your Kindle, although pdf documents don't work on it. I've used it for word documents from my job. If I could scan my work/job documents and load them onto the Kindle I would be so very happy, but the cost of paying someone to do that is too high and I can't physically do the scanning myself. But if you could, it's a feature that might be important to you. I also read books related to my profession that I would otherwise have been too tired to read since I use a headpointer all day. Although you can take notes on what you read, using the keyboard with an assistive device to do that would not be possible for me with my disability.

As for the cost factor, all I can say is that an electronic page turning device that would work for me runs in the neighborhood of four to five thousand dollars, so buying a Kindle and even some books is a no-brainer choice even if I just use the Kindle as an ebook reader.

So is the Kindle an assistive device? Well - yes and no. It has solved my problem for not being able to turn the pages, along with the ability to increase the text size which I also need which makes it an assistive device for me. But for many others, the Kindle clearly has the potential to, but would not be, an assistive device. If you added some of the features I've talked about in this review, the Kindle could be an all around solution for many people with disabilities and seniors. I'd like to see that happen because it's basic design makes it easy to use. And because I know many people who would benefit from owning one. Perhaps, now that I can read so easily, I feel the need to speak up for those who still cannot. Let's hope Amazon is listening.

[I have received no compensation from Amazon for this review.]

Saturday, April 26, 2008

How's Your News?- coming to MTV

How's Your News began back in 1994 at Camp Jabberwocky, a summer camp for adults with physical disabilities where a film director worked with campers, resulting in news shows produced at the camp. This led to a film called "How's Your News?" featuring five of the campers who took a road trip across America. And THAT led to 2004 coverage of the elections, featuring interviews with Howard Dean, Hillary Clinton, John McCain, Larry King and many more. Which led to more videos.

And now How's Your News is coming to MTV. Oh, did I mention they are a band? Yup. In fact, they are traveling in the Big Blue Bus across America as I blog (in New Orleans at present) and performing. You can read about their adventures at their blog. And you can read their bios here.

Exciting things like deliberately crashing their bus (oh don't worry, all safe) and meeting John Stamos and interviewing him. It's all over at their blog so go say hi to them and check out their travel photos and more information about their upcoming show. And you can also join in their enthusiasm and spread the word about their show by getting How's Your News stickers, T shirts and copies of their DVD's.

One of the shirts reads: Free the Media. Election coverage by people with disabilities? Very cool.

[visual description: Photo at left: Members of How's Your News cast are seated in front of a full size silver and blue bus with lettering across it that reads "How's Your News?;
Photo at right: The band members are shown performing in the Scoot Inn: Three male members play guitar toward the back of the stage, wearing blue How's Your News shirts, the lead female singer Susan is in the front and Larry, the percussionist, plays from his wheelchair. The other members are Jeremy, Sean, Ronnie, and Bobby. ]

On being dexterous or not

Step with care and great tact And remember that Life's a Great Balancing Act Just never forget to be dexterous and deft And never mix up your right foot with your left. — Dr. Seuss

Ahh, dexterity! A friend asked me the other day if I miss having it. And I decided that maybe that was a good question to answer on the blog since if she was thinking it, maybe other people think it too.

I can understand how a person might think that having quadriplegia makes me yearn for dexterity, but I've learned there's more than one way in life to be dexterous- and deft. So let's break this down.

Dr. Seuss was right. Life's a Great Balancing Act. We can't do two things at the same time, disabled or not. And so the things I physically can't do no longer take up my time. Most of those things are mundane tasks.

Think about it. What have you done with your dexterity so far today? You- over there. Made the coffee. Hmm. Now that sounds like fun. And you? Sorted through coupons? Wow. I'm jealous. Not. And you? Ahhh. Typed on your computer. Me too - with voice recognition.

I'm not saying not having dexterity doesn't call for some planning. But if you look at what a person does with his/her dexterity in a day (let's say a pie chart) and break down the mundane tasks - or those you could do without doing - which I'd say is the largest part of the pie, then break down those tasks that can be done with assistance or an assistive device, you'd probably just have one piece of pie left. (Lemon meringue. I'll take it. )

So you see it's really true what my youngest nephew who has CP and deals with dexterity issues too said. "It's no big deal. Well, not unless you make it a big deal."

Which is true of practically anything in life.

Over at Pitt Rehab....

Greg has posted a very interesting video on quality of life techology.

Blue Roof Technologies has designed robotic houses in an area right outside of Pittsburgh that assist in the care of Alzheimer's patients and the video shows how a family will use the technology to live independently. The caregiver has a spinal cord injury, her son has cerebral palsy and her mom has Alzheimer's. The "quality of life" technology used is interesting: it's been developed to watch how an Alzheimer's patient goes about his/her day and then tracks the activities to monitor things such as taking medication. Robots can take care of the monitoring and notify the caregiver if needed to intervene. Several universities are involved in the project.

This is just a brief explanation - go on over and check out Greg's links about this fascinating project.

Accessible gaming: Audio ping pong

The tech/gadget blogs are talking about a game of ping pong that is played via audio, with mixed reviews. One complaint is that it's more difficult, but the game does present a possibility for those with visual impairments and mobility impairments since it's hands free. Me? I think it's brilliant.

Basically you put on a set of headphones and listen to sounds to direct you as to which direction to tilt your head to "pong" the ball back. Simple idea and who knows- maybe it will lead to more audio games. The guy who created this? Mike McCracken, whose blog you can find here.

Friday, April 25, 2008

A curbcut, a bicyclist and a right turn on a red light

The other night after work I went out in my power chair for a walk. I crossed a street at an intersection in a residential area, obeying the traffic laws and waiting for the right time to cross.

It was a very nice night out and I noticed as I approached the curb cut on the other side that there was a bicyclist on it, blocking the curb cut. He didn't appear to be crossing, but was waiting. As I approached him, I asked him to move over so I could get up on the sidewalk and he started to respond, but he was straddling his bike so it took a few seconds and meanwhile I couldn't get up onto the curbcut. The light was still red however.

As this happened, a car whipped behind me to take a right turn on the red light and came within inches of my power chair. I heard the driver shout "Don't stop dead like that!" behind me. All I heard was a pebble from under his car tire zing up and hit my chair.

The bicyclist moved over and apologized profusely for blocking the curb cut and I got up on the sidewalk. He told me that he never thought about the etiquette of sharing curb cuts and asked me if it ever happened before. I explained that, yes, it had and drivers sometimes did not wait until I went up on the sidewalk as pedestrians or carriages or bikes or skateboarders moved to the side, not realizing I couldn't get my chair up on the sidewalk.

I also told him I attribute this to a lack of awareness by drivers that curb cuts may be blocked and, if so, a wheelchair can't immediately go up one.

And I have blogged about it before, but here goes again. Even if a few people see this, maybe it'll help everyone slow down just a bit more.
[visual description: A curbcut is shown at the end of a crosswalk marked in white lines. ]

Disability Blog Carnival: Abuse

The 36th Disability Blog Carnival is now up over at Abnormaldiversity where Ettina did a wonderful job hosting on a topic that, as you will see, addresses many issues in the disability community.

The next carnival will be held in two weeks over at cripchick's blog and you can find information there at this handy dandy link. The topic is Disability Identity.

Don't forget about Blogging Against Disablism Day on May 1 over at Diary of a Goldfish. This event is open to everyone - allies included. Please join us.

On being healed

I received yet another heartbreaking email from a person with a disability who tells me she went home and wept after someone in her congregation told her she is disabled because she sinned. I hear these stories and shudder because this kind of "punishment/sin" myth around disability has lingered for far too long in our society. I also want to scream to people that there are as many, if not more, miserable and unhappy people who are not disabled as there are people who are disabled.

The reality is that the words we say at Mass about being healed- Just say the word and I shall be healed- are not to be taken as limited to physical cures, but are about spiritual healing. Spiritual healing can not always be seen.

I like to read writings by Mark Smith, who authors many online articles and runs the very useful Wheelchair Junkie site, through which he assists many people with their mobility needs. It's a powerful, positive mission this young man is on: his writings hold people with disabilities to account and not everyone likes that. For example, in a recent post, It Gets You There , he wrote about how one sees one's wheelchair - as a tool or as a limit - is up to the person and shared how he sees his wheelchair as a way to do things in life, to get places. His philosophy is a far cry from the far too often limiting stereotypes surrounding people with disabilities in our society.

We all need healing, but it's not about our bodies. It's about our attitudes, our outlook, our "take" on things. We all know that two people in the same exact situation don't respond the same way. I've met quadriplegics who are happier than someone with a corn on his/her foot who hobbles away from a car with a handicap placard saying "Woe is me".

This is also true of many other things in life, not just disability. I meet people doing their jobs who are being paid minimum wage who are happier than those making hundreds of thousands dollars a year. Being rich or poor doesn't equate to being healed, either. We could list all the variations among humans and it would have nothing to do with being healed because healing is about spiritual well being.

God has healed me over and over again. As a Catholic, when I say Just say the word and I shall be healed, I ask God to heal me spiritually, to cleanse me of my sins, to guide me toward His Will, so that my own will doesn't cause me to trip over myself or others. I would be nowhere without God's healing, but I never pray those words literally for a physical cure.

Why not? I have quadriplegia. I've accepted that. And that matter is entirely out of my hands. The energy I have needs to go toward being positive and using the tools I have to help others.

Does it present challenges? Yes and I try to write honestly about those here. But in and of itself, being disabled is not the biggest challenge. The biggest challenge is trying to overcome the attitudes of those who only see the disability, not the person.

Those who think people with disabilities are disabled because they have sinned. They are, indeed, the ones who need to be healed.

Genetic discrimination law passed in Senate

After passing by a vote of 95-0, the bill will now go to the House.

The legislation would safeguard genetic information to be kept private between doctor and patient and would prohibit discrimination by employers and insurance companies, among others. It is being hailed by Sen. Ted Kennedy as the first new civil rights bill of the century, noting that discrimination based on a person's genetic makeup is just as wrong as discrimination due to race or religion.

Until recently, genetic tests were used mainly for rare conditions that could have catastrophic health consequences. But there are currently more than 1,200 diseases for which predictive clinical tests are available -- including breast cancer, Alzheimer's and a particularly aggressive type of colon cancer. More tests are in development for conditions such as diabetes.

"We're not talking about rare genetic disorders anymore; we are talking about very common traits," said geneticist Joann Boughman, executive vice president of the American Society of Human Genetics. "We are to the point where we can begin testing people so they can make much better plans to avoid getting sick in the first place."


Free ebooks

As I use my Kindle more each day, I'm finding resources out there I'd like to share with others. Ebooks can be read (depending on your level of disability) in various ways - on handhelds or on your computer via software. I'm finding that the "mobi" files work best on Kindle (only if they are DRM free) ,although a few sites (like manybooks and feedbooks) have a Kindle version available, which makes it even easier. What I do is download the file to my desktop and then drag/drop it onto the Kindle, but I know people who download directly from feedbooks onto their kindle.

Here are a few sites I've found with books that are classic or have creative commons licenses:

Project Gutenberg
Many Books
A mobile version of feedbooks is available here

I've found that Baen and Tor offer free scifi/fantasy books to readers with registration. If you'd like more links for DRM-free ebooks in that genre, go to David Bean's blog post here.

I'll be back to post more as I find it.

I also want to add a link to podiobooks, where you can find free audio books for your mp3 player or to play on your computer.

Thursday, April 24, 2008

Reality TV show: Sidewalk stunts

So last night after work I took a walk and decided to take yet another different route. It's always interesting when I do that, because sidewalks are in various states of repair around town and I just never know whether I'll hit a good block or a bad block. Good blocks for a wheelchair user are those where there's a curbcut of an appropriate height -hopefully one both on and off the block- and sidewalks that are reasonably traversable. It's also helpful if branches from bushes are reasonably cut back, although that's a bonus. Flowers in my hair, I suppose, is nothing to complain about in the scheme of things, although goldenrod makes me sneeze.

But as I went up a hill past a cemetery, I thought I might wind up in the cemetery. There was a sidewalk that was so crooked side to side that it measured a three and a half inch rise on the right and was flush to the ground on the left. Now I know my wheelchair can do three inches easily but wasn't sure about the difference in grades from side to side.

A woman walking by stopped and watched me gauging the risk of this sidewalk maneuver. She didn't say a word, but her arms were full of college textbooks and she looked as if she'd been in a library for a week on end. Her eyes were squinting and her skin was pale. Doctoral student?

I thought for a minute she was going to bet me that I couldn't do it.

What the heck, I thought.

So I hit the joystick. My power chair lifted on the right with no problem and the left wheel just went over the even ground, and the chair turned a bit to the side, at which point I was facing the cemetery. I couldn't help but chuckle at that irony.

"Cool," she said, walking on.

Maybe I should start charging when I tackle some of these sidewalk obstacle stunts. Another reality TV show?

Catholic Writer's Conference Online

The Catholic Writer's Conference Online runs from May 2-May 8, 2008, as you can see in the widget I have toward the right, but if you want to sign up to attend, April 25 is the last day to do that. If you're interested, click on the widget. It's free to attend, although donations are appreciated. It is presented by the Catholic Writer's Guild and Canticle magazine.

Meredith Gould, the author of Come to the Table and The Catholic Home, will be hosting a session for those interested in self publishing: "Self Publishing as a First Resort." Tuesday, May 6, 8:00 PM and Thursday, May 8 at 11:00 AM. Her talks are both witty and informative!

Go on over to their site. There are many authors and professionals who will be hosting and helping to run this event,including Mark Shea, Tim Powers, Melanie Rigney, Hope Clark (who writes about funding for writers and shy authors for those who may hesitate) and many more -it is a wonderful resource for Catholic writers at all levels.

The height of things

An Ohio Methodist church has agreed to let cell phone companies use its steeple as a tower - and to use the monies earned for the betterment of the community. In addition to creating a number of jobs at the church, the almost $400,000 earned (which invested has come to $2.1 million) over the past three or so years has gone toward creating a daycare facility, a tricycle park, plans for a second daycare center and a program for learning disabled kids.

Although the church building needs repairs, no money has gone toward that. However AT&T has agreed to paint the church tower and repair the windows during an upcoming installation - and the pastor of First United Methodist church in Ohio says that the arrangement has resulted in helping many people in both his church and the community to better their lives.

Dr. Seuss and the IEP plan

A poem I found online for all who deal with IEP plans.

And a great blog by a parent of special needs children with autism information called a walkabout's weblog that I found over at BlogVillage. A post there called Alphabet Soup is apropos.

Wednesday, April 23, 2008

I can read

I posted a few days ago that I'd be trying out the Kindle from Amazon to see if I could use it to read. It works - at least for me, with my disability, I found a way to make it work as an assistive device.

I can read with no head pointer, no pain. Without having to deal with a device for audio that I can't get at due to lack of dexterity. This device has the potential, in the future, to meet even more needs for people with disabilities with a few tweaks and some forethought.

This is very exciting. And good to find out that there are free books available at which are easy to download. Books like classics from Edgar Rice Burroughs, who in 1936 was approached by Bob Clampett to animate one of his series, as shown in this video. (h/t Sandbox World blog)

I'll be doing a review of it and sharing my experiences with it. Soon. But first I want to read a few books.

I'm sure you understand :)

God is bigger than your doubt

Place your finger into the wound
Oh doubting Thomas
God is bigger than your doubt
(Although I could do without
Constant questions )

If you must
Insert your entire hand

The wound is large enough
Has bled enough for you
(And you and you
Those whom my words now anger)

Can you see my face Thomas
Many cannot but will believe
Not touch but have faith
Not ask why but love each other

And yet I love you Thomas
And those like you who come to me

I see your tears Thomas
Hear your fears whispered in the night

Yet you stand before me
Your finger at the ready

Go on place it in the wound
I will forgive your anguished cry of surprise
Did you not see the women weep by my cross
Mourn my earthly death
Heed not my words that I would return

God is bigger than your doubt

Voice guided ATM's

Voice guided automated teller machines (ATM's) are being installed by Cardtronics as a result of a settlement between the company and the National Federation for the Blind. This issue was brought to my attention by a blind friend who is volunteering to check out local ATM machines for accessibility or lack of same for NFB.

She told me that the voice guided features are handled through a headphone for privacy and allow independent use of the ATM machines. Moreover an option is given to the user as to which denomination of bills he/she prefers which allows the person to know independently how to mark the bills. For example, my friend folds her $10 bills one way, her $20 bills another, so that she can tell what's in her wallet. An ATM machine that doesn't designate which bills it's dispensing results in her having to ask for assistance since current technology that allows blind users to "read" currency are still high in cost.

Tuesday, April 22, 2008

GPS - the wheelchair kind

When I was looking at power chairs, I noticed some people rigged them up with all kinds of devices. Some were for enjoyment, like people who mount iPods to listen to music. Others were more practical, like the Drink-aide system which helps you hydrate hands-free.

And then I saw the GPS gadgets on wheelchairs. And I thought at the time- great, but that kind of GPS isn't going to show the information a wheelchair user needs.

Trailblazers software, a GPS system, is being designed by students to provide a guide to wheelchair users for barrier-free routes in Germany. Their goal: to create a better quality of life for wheelchair users who encounter dead ends in their paths due to barriers, like steps or other obstacles a wheelchair can't traverse. And here's another link along the same lines.

I hadn't given this whole line of thought much attention since that day until today when I decided to take a lunchtime walk. I went on a different route than usual and found myself on a back road that ended with a dead end. My choice if I wanted to get back the quickest way was not good: go on a narrow road with no sidewalks or through a park with steep paths and not know whether there were sidewalks on that road.

I turned around and took the safe, longer route home. But I realized that even though I know this area, I have no clue what barriers there are when I travel by wheelchair instead of car in most directions, except for a few.

Luckily my wheelchair had plenty of power left and I was far from being in the middle of nowhere, but still I couldn't help but think of how helpful it would have been to have a way to tell which route from that location would be barrier free - and the safest.

"Pain as an Art Form"

An interesting NY Times article with lots of links about Pain Exhibit, an art exhibit with entries from people with chronic pain. Noting the use of art to express and communicate pain as a tool for patients, the article notes how pain is often undertreated because of an inability for doctors and patients to address the issue through communication. You can visit the online Pain Exhibit here.

For those with invisible disabilities , check out this one.

There are sections on Loss of Faith - as well as Hope and Transformation. Here's a 3 D rendering in multimedia called Book of Job.

Hope in Action

Look about you with Christ’s eyes, listen with his ears, feel and think with his heart and mind. Are you ready to give all as he did for truth and justice? Many of the examples of the suffering which our saints responded to with compassion are still found here in this city and beyond. And new injustices have arisen: some are complex and stem from the exploitation of the heart and manipulation of the mind; even our common habitat, the earth itself, groans under the weight of consumerist greed and irresponsible exploitation. We must listen deeply. We must respond with a renewed social action that stems from the universal love that knows no bounds. In this way, we ensure that our works of mercy and justice become hope in action for others.
-Pope Benedict XVI

Hope in action The Pope's words to the youth.

Last night I watched Little People, Big World. The 17 year old twins volunteered to help families whose homes were damaged in a flood. Jeremy said very simply that he put himself in their places, and thought about how he would feel if he and his family lost everything and no one showed up to help. It was a simple but powerful statement of a growing maturity from a teenager.

How would I feel if that happened to me?
What if no one showed up to help?

But then when he and his brother Zach showed up to help, there was a really distasteful job to be done. Someone had to climb into the flooded basement and clean out the ducts. Zach's reaction was to jokingly say he was a good size for that, considering he's got dwarfism. Both he and his twin Jeremy volunteered along with a few other teens and climbed down an open window to the basement. It was smelly. Gross. One of the homeowners was crying because people he didn't even know showed up to offer so much help.

Hope in action. People don't need words. They don't need platitudes or advice. I can't tell you how many times I hear from people in a jam who are reaching out through email for help. Where are their neighbors, their churches, their community? I think as I try to help them from hundreds of miles away.

I've gotten over my discomfort at asking for help for others, but it's quite different to ask for help for myself, so I never blame people who ask me to help them find help. I know how hard it is to do. The reality is this: some people just don't hear the call when you ask. They bounce it back on you, even in your worst moment. They forget to ask:

How would I feel if that happened to me?
What if no one showed up to help?

And they miss a chance to be hope in action. Instead their response is:

I have my own problems.
Isn't there someone else you could ask?

Imagine how this would make you feel if you needed help badly. Much worse and, of course, it explains why some people won't ask for help and email someone named Wheelie Catholic.

There are a lot of good people out there. And most of us, including me, can help sometimes and at other times can't. But there's a difference between being willing to help and sometimes not being able to and an arrogant attitude that perceives the people who need the help as blameworthy. That attitude just flies in the face of hope in action and forgets to ask:

How would I feel if that happened to me?
What if no one showed up to help?

Monday, April 21, 2008

Cochlear implant debate: Sweet Nothing in my Ear

DeafDC Blog does a great review of the movie Sweet Nothing in My Ear- and points out how the careful balance the movie struck in the cochlear implant debate was ruined by a commercial following the film.

Here's another one that talks about leaving children out of the political debate on cochlear implants from Paotie's Green Couch.

If you'd like to see what other blogs and vlogs in the deaf community are saying about the film, click here to go to DeafRead.


Wish me luck with this one. I'm going to be getting a Kindle device in hopes that I can read books on it. I've tried various assistive devices over the years and haven't found a comfortable solution yet. Books on tape are read on devices that aren't designed for quadriplegics and require assistance to use. I do use a headpointer, but there is a fatigue issue with that after a number of hours using it for work. (I'm still trying to finish a book I started over a month ago this way which is very frustrating and inefficient.) Although I know there are electronic page turners, the price tag is very high.

I'll be doing a review of possible ways to use the Kindle for someone who has limited upper extremity movement. (This will be an unbiased review since I'm not receiving any compensation). I haven't seen reviews on the use of it as an assistive device and can imagine there will be a need to rig up a way to hold it and hit the buttons. Here are some things I'll be exploring:

One person online wrote that he was able to rig up a velcro strap on his in order to keep him from hitting the wrong keys and to make it easier to lift or carry. Another person wrote that he devised a stand to hold his hands-free. One person says he can use his elbows to turn pages since the bars on the side are long. Some reviewers point out various uses for the Kindle that may interest people with disabilities besides turning pages, including listening to audio books, taking notes on books, increasing size of text, a search function for vocabulary and Wikipedia, ability to carry approximately 200 books with you (reference books perhaps?), portable web access and wireless connectivity to order books, newspapers, magazines and blog content.

[visual description: The Kindle, a white ebook reader, is shown next to a copy of the NY Times paper. It's the size of a large paperback book, has a screen across the top 2/3 of it and a keyboard underneath. Along the sides are buttons which are used to turn e-pages.]

Hope in unexpected places

I was watching the movie Midnight Clear with Stephen Baldwin last night, touted as a movie where hope is found in unexpected places on a Christmas Eve. The movie pulled together the stories of various characters struggling day to day in their lives- Baldwin, an alcoholic recently homeless and unemployed while weathering a divorce; a youth ministry leader devastated by a car accident a year earlier which left a co-worker (Rick) brain injured, still not home; Rick's wife and son; a lonely convenience store owner and an elderly woman. What happens in the movie is that, because it's Christmas Eve, a few of the characters reach out to each other and, despite their own difficult circumstances, extend hope to others.

Pope Benedict XVI's visit definitely stirred hope in many Catholics and others with his message of the need to live our faith despite the difficulties we encounter in our present time. He reminds us that it was never and has never been an easy road to do that in the world, yet at the same time assured us that doing God's will, in the end, would lead to an enduring and lasting footprint we can leave on this earth. It would lead to both freedom and joy.

Our mortality scares many of us. I know this not only because I've helped run a retreat for people with terminal illnesses, but I've watched a number of my friends die at young ages. Watching how they lived knowing that death is approaching and their time on earth is limited has taught me a great deal about how to live.

How blessed I was to know my friend Cindy who had MS and spent her very last bit of energy running an Independent Living Center to help so many. She taught me that no matter how little energy one has, you can always find some way to help. No hands? Use your mouth. No speech? Blink your eyes. The inherent dignity of life remains in each of us to our very last day on earth so strongly that we always have a chance to be that hope for someone else. My 60 pound friend Andy, who died in her early 20's, who spent her nights in an iron lung and whose last words remain with me to this day, a message that I try to pass on to others: the best feeling I ever had was helping someone else.

The Pope's words struck me as a reminder to all of us that we need to remember we are accountable for our mortal time and we are here to show hope to others. We think we can't be that hope to someone else because of our own problems. We're too busy. We don't know enough. We might say the wrong thing. Bottom line: we just don't feel good enough. We forget who we are, which is God's children, spiritual beings.

Each of us, every single day, has a chance to be that hope in an unexpected place to someone else.

[For extensive coverage of the Pope's homilies and speeches during his visit, as well as photos and other information, please visit Whispers in the Loggia.]

Sunday, April 20, 2008

Visual description of final Mass at Yankee stadium on papal trip

For my visually impaired readers, a narrative description:

The Pope has entered Yankee stadium, dressed in light gold robes. He ascends the ramp, stopping to shake hands and greet people. A huge banner welcomes all to Pope Benedict XVI's Mass in New York in 2008.

The papal seal is behind the podium with the altar, topped by purple and gold bunting, visible as the Pope takes his seat on the podium. Cardinal Egan welcomes the Pope for all 195 dioceses and archdioceses of the US, noting the bicentennial anniversary of the Archdiocese of New York and others. The crowd is over 57,000 people and cheers numerous times during the greeting, some wearing gold shirts with the number 16 and the name Benedict on the back. The Pope smiles, clasps his hands and bows his head when Cardinal Egan tells him what an appreciated grace his presence is to all of us.

The sun has just brightened considerably from a former cloudiness as the greeting continues, now in Spanish from Cardinal Egan. The crowd roars and cheers. Mass begins.

The altar is white with a gold cross- a gold stripe across the middle of the front of it and the top (table) across the front. The podium is covered with yellow flowers in pots. The sun continues to shine brightly.

The first reading is Acts 6:1 -7 in English. The second reading, in Spanish, is 1 Peter 2:4-9, which notes that those baptized into Christ are the living stones of the church and that every member has a role.

The Book of readings is brought to the Pope, along with incense. He prays, blesses it as Alleluia is sung by the cantor, dressed in purple robes. The book, red with a gold inlaid cover, is held high for all to see. The Pope rises from his seat, singing along, his hands clasped in prayer. The gospel reading is John 14:1-12 and is chanted: In my Father's house, there are many places....where I am going, you know the way...Thomas asks how can we know the way...Jesus says I am the Way, the Truth and the Light. No one comes to the Father except through me...Whoever has seen Me has seen the Father...Whoever believes in me will do the works that I do and will do greater works than me because I am going to the Father.

he Pope sits and begins his homily. (My paraphrasing). He greets everyone with great affection and says let us renew our faith and hope in Jesus. He speaks of the twin commandment of love of God and love of neighbor, noting the challenges and cultural tensions involved. He speaks of a unity that transcends human limitations, and how outward associations and programs only exist to support our fundamental works.

He speaks of the obedience of faith, noting these words are a stumbling stone for many. He notes the mystery that only by losing ourselves can we truly find ourselves and true freedom. He says that God's will is our peace. Truth brings a new and liberating way to see reality-freedom and truth belong together. He speaks of the world being transformed with the liberating truth of the Gospel. He tells us to harness all our energies into the coming of God's kingdom, to do things that will truly endure and bear lasting fruit. This means being alert to signs of the kingdom coming and not to lose heart with adversity and scandal. He speaks of the prophetic witness of those who work for the poor and vulnerable. He mentions the youth, the Church's future, and encourages them in their faith. He asks the youth to open their hearts to callings to serve as clergy. View the future with hope, allow Jesus into your lives.

Let us work with renewed zeal for the coming of God's kingdom. (vast applause, the Pope smiles and speaks in Spanish.)

The crowd spontaneously chants and cheers after the homily, then claps as the Pope raises his hands in a wide greeting, turning from side to side to face the large audience. He smiles, his lips move perhaps in prayer.

Mass continues with the Profession of Faith (for non-Catholics, where we recite the prayer of Catholic beliefs.) The camera shoots to a father with a young girl leaning on him and a young boy in the crowd with his family. The altar is on the field of Yankee stadium with a number of rows of chairs facing it, but most people sit in the stadium stands (and there are so very many that most of the time one cannot make out any faces due to the distance but shots show people of all ages, teenagers, mothers, fathers, seniors and even babies - mostly lay people but some members of the clergy too). A yellow, white and black section laid on the field in front of the altar separates the seating from the podium.

Mass continues. Prayers for the church are said in at least half a dozen languages. The sun again shines very brightly as we transition toward the Liturgy of the Eucharist. The gifts are brought up to the Pope, who greets each person. Lines of priests and deacons criss cross the stadium floor, approaching the altar to help serve Communion, some standing on the ramps waiting. The sun shines against the gold, yellow and white hues as the Pope lifts up the chalice and plate after approaching the altar. [A camera shot shows people in the stands singing from hymnals. Some use the hymnals to shield their eyes from the sun, some share the booklets with loved ones.] Cardinal Egan leads the Prayers for the Living. The Pope is now consecrating the bread and wine and holds up the host, then the chalice. Prayers for the Dead are now said. The Lord's shots show people holding hands as they pray in the crowd.

Sign of Peace is offered in the crowd - 57,000 people turn to each other in the stadium to offer a sign of peace. Truly a remarkable thing! One young man greets half a dozen people around him enthusiastically, while others reach across rows of people to greet as many as possible.

The Pope performs the Communion Rite and begins to distribute Communion, as clergy approach the crowd to begin giving communion among them. [For my deaf readers:it is very quiet as this is done with rows of people filing through the stadium grounds for those seated there, while priests and deacons take positions in the stands, having rehearsed how to do this in the most orderly manner possible. Each section is assigned to a priest or deacon and people walk down the stands to receive Communion, then go back to their seat. I see a NY officer who has quadriplegia in the crowd. Not in the stands :) May I add that the choir now singing is wearing purple robes with gold sashes. The TV commentors are surprised at how quiet this all is but I'm not- Catholics have done this for years:) ]

There is a wonderful close-up of the Pope seated on the podium, smiling at the crowd, looking around the stadium, waiting for people to return to their places after communion. The Pope gives the final blessings. The Pope smiles as the crowd cheers again, many waving gold cloths or T shirts in the air. The Pope approaches the altar, kneels and begins to leave the podium, waving, smiling and the crowd erupts into louder cheers, now waving any object they can find of all colors as Beethoven's Ode to Joy plays in the background. The Pope's hand is kissed by many clergy members as he stops, turns in all directions, his right hand up in the air, and no one is leaving the stadium as the Pope exits very slowly. Many cameras in the crowd, cheers, and outstretched arms impossibly far away. Chants of We love you we love you over and over again as the Ode of Joy plays. The Pope descends into the dugout and the crowd quiets a bit, the waving stops as the priests file out of the stadium along those yellow and white lines.

The Popemobile begins to move. Many remain in the stands for at least twenty more minutes, hoping for another view of the Pope. The Pope waves a final goodbye as he gets into the Popemobile, smiling broadly, wearing an ermine shawl over his robes. The crowd cheers wildly again, waving handkerchiefs and gold T shirts as the Popemobile takes a final turn around the stadium. The sun continues to shine as the Pope stretches out his right arm in greeting as the Popemobile exits the stadium.

Go in peace :)

Pope Benedict XVI blesses a child...

..when meeting with disabled youth yesterday at St. Joseph's Seminary in Yonkers, NY. Pope Benedict XVI told the children:

"God has blessed you with life, and with differing talents and gifts ... our faith helps us to break open the horizon beyond our own selves in order to see life as God does."

[visual description: At left: The Pope is seen shaking hands with parents during his visit. Several young children in wheelchairs and strollers are seated with their parents watching the Pope and one woman holds her hand out to reach for the Pope. At right: The Pope is pictured from the back as he raises his hand to touch the right cheek of a girl held by her mother. AP photos via]

Sinking and dancing

No, it's not a typo for singing and dancing. It's sinking and dancing.

Yesterday I went into a park with my friend D, who decided to sit on a park bench. I followed her, then realized that my power chair was sinking. I was on pebbles.

Pebbles are a no-no for power chairs.

I hit the joystick to back up, but by then the wheels were just going deeper into the ground. I looked down and realized that my ship was sunk.

"Oops," I said.

A couple standing nearby asked if I needed help. I suggested we try a piece of cardboard.

D produced a white Chinese food container. "Cardboard," she said, opening it up. "But I don't think it's big enough." Then she added "Chow mein."

"That's okay," the guy said. "We'll just push the chair."

I showed him how to disengage the motors so the chair could be pushed and the couple and D were able to get the chair out of the pebbles. No tow truck needed.

I thanked him and D and I began walking home. "You need a bell on that thing," she said, pointing at the power chair.

"In case it sinks again?" I asked, picturing me sitting in mud, ringing a bell.

"No," she said. "So people will stop walking in front of you all day. You know they just don't expect to see wheelchairs."

"They're going to see wheelchairs," I said, thinking of the thousands of vets coming home and the aging baby boomers.

We approached the campus. They were having a Spring Fling, complete with a live band, inflatable rides and tables of refreshments.

I hit the joystick in time with the music. What fun- although very different than dancing in a manual chair.

But how cool - my first dance in my power chair - on a sunny day in April at Spring Fling.

[visual descriptions: Left photo on top: A ship sinking at sea; Bottom photo at right: A male and female college student pose together. The male student points at the camera; the female student holds a frisbee over her head. Underneath them are the words Spring Fling.]

Saturday, April 19, 2008

Music Within

This movie is about Richard Pimental, a deaf Vietnam vet, who worked tirelessly toward inclusion in employment for people with disabilities in an era before the American with Disabilities Act was enacted. This movie depicts his arrest while with a friend who has CP under the Ugly Act, a law preventing pwd from appearing in public, and how Richard had to hide his disability to get a well paying job. At the same time the movie portrays him as a full character, exploring his relationship with a mother who had mental health issues and his journey toward self-acceptance. It is a movie for everyone to watch and consider the questions about inclusion it raises.

The DVD for this movie is now available through Blockbuster rental.

New to the blogroll: Cow Bike Rider

I found this blog by a Catholic father, who recently entered the Catholic church, whose son has cerebral palsy. I was lucky enough to find it while visiting the blog Perfect Joy. I'm adding it to my blogroll so others may find it too.

One Little Boy: 18 Months Later is a wonderful post that I encourage everyone to read.

Music for Pope

This link shows the different groups and individuals and the music they are doing for papal Masses.

Of particular note to this blog is the following:

The Pope will hold a prayer meeting later today at St. Joseph's Seminary with young people with disabilities where the New York Archdiocesan Deaf Choir will perform.

If anyone has any firsthand information about this event, please let me know so I can put it up on this blog. Thanks.

Purple petunias

I've never been a gardener. In fact, I've developed a bit of an aversion to it. Meredith is a gardener, which is why I wound up googling clematis last night after midnight when she emailed that she bought a trellis for clematis. After I saw a photo of the climbing flowers, I said "Oooh." Then I sneezed - even over the internet.

I know that's where my aversion to gardening began. My parents, who grew up in the city, decided to plant gardens in our large suburban yard - flower gardens and vegetable gardens. I was pressed into service to weed the gardens every Saturday morning and hated the job. At that age I had allergies,sinus and hay fever issues, so I spent most of the time sneezing and trying to see through watery eyes. After I stumbled into a patch of tomatoes one day I was released from duty and returned to my book to read.

It wasn't until years later that I ventured into a garden again. One of my university friends was planting petunias at her home and asked if I wanted to help.

I wandered over to where she was planting a petunia. She prepared the soil, placed the plant in the hole, and patted the dirt around it, making it all comfy.

"Then," she said, standing, "after you plant it, you talk to it a bit." She turned to the plant and said cheerily "Welcome to my garden. Grow and thrive!"

Huh? I thought she was kidding me, but she looked serious. So I squatted down, took a petunia from the bin and planted it the way she showed me under her watchful eyes. There it sat, in the ground, and I had to think of something to say to it.

"Hi there, petunia," I began. I cleared my throat and placed a thumb on a purple petal. "I've never spoken to someone of your species before, but I wish you enough rain so you're not thirsty, yet not enough to flood you. I hope you have enough sun to make you grow, but not so much that you wilt." Hey this was easy. I was on a roll. " And I hope there's no hurricane this year that will rip your little petals off-"

"What are you doing?" my friend asked, in the same wounded tone my father had after I stumbled through his tomato patch. She knelt down and said to the petunia "We hardly ever have hurricanes. Just know that you're welcome here in this safe little garden well protected." Then she looked at me. "Stay away from my petunias," she said.

Banned from yet another garden. I sighed as I returned to reading my book.

You know, life changes but not that much.

Friday, April 18, 2008

Faith: No minor leaguers on God's team

People with spinal cord injuries and other disabilities are often treated like minor league baseball players when it comes to quality of life issues. For example, if you come home from rehab for an acquired disability, where positive quality of life and a good quality of life is the touted outcome, it can feel like winning the World Series first, then being sent to the minor leagues, where you have to rustle up your own uniform as you face the need for equipment over the years.

When my mobility became impaired due to my shoulder injury I watched my quality of life go downhill rapidly. I knew I needed a power chair to get around. I've been in the minors for years and knew I had to hustle. So I went to Ebay. Then long nights up late to earn money for one. I prayed. A Catholic medical dealer went to great lengths to help me afford exactly what I needed - and wanted.

And now there is the transportation issue, because not having transportation affects quality of life too. As there was the ramp, the accessible bathroom, kitchen and other things.

You hustle, bustle, rustle up things when you're in the minors. Don't dwell on the problem, work on the solution.

I also remember that, on God's spiritual team, I'm never a minor leaguer but equal to everyone else. I don't have to wear torn clothes or watch the team bus pass me by refusing to lower the lift. I'm never hungry in my spiritual body because I can't reach far enough to get at food, because I'm a member of God's family and my brothers and sisters aren't going to stand by and allow one of their own to suffer, to be treated that way.

Yet here on earth it happens every day to people with disabilities like me.

Those are the moments when I know that having quadriplegia and the physical dependence that comes with it present me with a spiritual crossroad: do I trust in God? Do I allow my faith to to be shot through with holes or do I remain firm in my convictions whether or not God provides? I choose to trust God.

Some would argue that mine is a ludicrous trust, but they may judge it on whether I actually get what I need in an earthly sense. And I've found that isn't always what determines my quality of life. My spiritual state is what matters. If I don't get what I need, I often get what I need spiritually in order to make it possible for me to do God's will. And if I keep the focus on doing God's will, I do okay in terms of having a good quality of life.

God always finds a way to remind me that I'm not a minor leaguer, no matter how the world may see me or treat me as a person with a disability. There are no minor leaguers on God's team.

Thursday, April 17, 2008

Pope says first Mass in the US: VIsual description

Pope Benedict XVI has just completed a "lap" around the field at Nationals Park in Washington DC and will say Mass in front of an estimated 45,000 people. A wonderful pan shot shows cardinals clapping as the sound of a hymn rises over the cheers of the crowd and the Pope disappears out of sight to disembark from the "Pope-mobile".

It is a beautiful sunny day outside. The welcome by the crowd was overwhelming. Mass will begin at 10 a.m. Look for the kids from St. Winifred's Roman Catholic church from the Pittsburgh area in the crowd :)

If you are not a Catholic and would like to understand the Mass better than my simple explanations, see this site for a walk-through of a Mass.

As promised to my visually impaired readers, here is a live visual description. As the Pope approaches the altar dressed in scarlet robes, he waves to the crowd, then stops to shake the hands of people close enough to him. Flanked by bishops and cardinals in scarlet robes, he leaves their ranks to talk to people, taking his time as he does so. Now he is ascending the long ramp up to the altar, still waving at the crowd. He turns on the ramp platform, ascends the other way and waves to the crowd on the other side.

The Pope is seated behind the altar, facing the crowd. His chair is gold with a white section behind him and what appears to be a chalice over his head engraved into the chair. The altar has crosses on the front and behind each cross is a white candle in a gold holder. Pope Benedict XVI stands and opens his arms wide. The crowd claps and cheers. He brings his hands together, as in prayer, then sits back down.

As the miter is removed from the Pope's head, a third "standing ovation" occurs. Mass begins as the Pope tells the crowd that in our time together, let us remember Christ. The chair upon which the Pope is seated is on a podium behind the altar. There is a gold curtain with a large gold crucifix behind the podium. The floor is gold and there are wide steps approaching the altar and more narrow steps approaching the podium with the Pope's seat.

The first reading from the Scriptures is in Spanish, reflecting that our country is a nation of immigrants, as well as the large Hispanic Catholic community in our country. The second reading is taken from Romans, the words of St. Paul. These readings speak to the Holy Spirit inspiring us to be a force for reconciliation, justice and peace in the world, according to George Weigel, commentator.

Alleluia is sung as the Pope blesses the con celebrants. They bow. The Pope rises for the reading by the priest. " A reading from the Holy Gospel, according to John". It is about Christ's return to the Apostles after his earthly death and his message: "Peace be with you. Receive the Holy Spirit. Whose sins you forgive are forgiven them; whose sins you retain, are retained. " Alleluia is sung. The Pope sits down and begins his homily. (Forgive my paraphrasing where it may not be accurate, but I did my best for those who missed it or couldn't hear it. I am multitasking a bit here.)

Pope Benedict XVI speaks of an appreciation for the rich diversity of American Catholics. He talks of a spirit of community, a mystical body and salvation for all humanity through constant conversion through Christ and an invitation to all people to enter into community. He talks of a time of great promise, yet signs of alienation, increased violence and a growing forgetfulness of Christ. It is a crossroad for the church in America and the world. He speaks of the human family being reconciled in justice and love through the Holy Spirit, bringing us a true freedom which enables us to live in conformity to God's will.

The Pope offers a word of gratitude toward those who have taken up the call from Vatican 2. He speaks of a path of commitment to justice and peace, saying there is much to be done. The Pope speaks of an intellectual culture that is genuinely Catholic and notes the urgent issues affecting the future of American society and recognizes that Americans are a people of hope. He speaks of injustices toward Native Americans and slaves from Africa.

The Pope speaks of the pain caused by the sexual abuse of minors and says he acknowledges, but cannot describe the damage caused to the church nor the pain and harm inflicted upon those who suffer. He urges efforts toward healing and reconciliation as the Holy Spirit pours out its gifts upon the church, saying those who have suffered need support and efforts to protect children from sexual abuse must continue. He asks us to reach out to those who suffer, no matter who we are and to trust in the Holy Spirit's power to heal. He offers a prayer of unfailing hope and faithful endurance, noting the church is constantly reborn in hopes of a new beginning.

The Pope then delivered a homily in Spanish after which he pauses and is silent. The Mass continues. Petitions are offered in half a dozen languages, beginning with a petition to give clergy and Catholics the courage to proclaim our hope in the Lord.

The gifts are brought to the altar, directly to the Pope on the podium. The Pope greets each person, taking their hand, smiling, exchanging a few words with each one. Some are nuns, priests, a seminarian I think and many lay people. Afterwards, the Pope smiles and descends from the podium to the altar where he greets more lay people.

The miter is again removed and the Pope approaches the altar, leading the Eucharistic prayer, flanked by at least half a dozen members of the clergy, including the Archbishop of Washington and the Vatican Secretary of State. The sign of peace is offered as the Pope greets those on the podium with him and the congregants offer it to each other as brothers and sisters, to reconcile with each other before receiving the body of Christ in Holy Communion. The Pope leaves the altar to distribute Communion at the bottom of the steps.

Bright yellow umbrellas are held over the heads of those distributing Communion, except for the Pope. The umbrellas not only help people see where to go, but cast a celebratory hue as the estimated 46,000 people receive the body of Christ. The Pope returns to his seat to pray, his eyes closed, as Communion continues to be distributed to the large crowd.

Placido Domingo is now singing Panis Angelicus. The Pope leads the prayer after Communion and gives an apostolic blessing over religious articles brought, including the new cornerstone and tabernacle of St. John Paul II high school, a new Catholic high school in Arlington, VA.

The Mass is ended as the Pope waves to the crowd. The Pope kneels at the altar, then, his right hand to his heart, pauses, watching the crowds as other clergy members descend the steps to the ground floor of the stadium. The Pope goes down the ramp behind a few other clergy members, waving. Walking down the white carpet on the ground of the stadium,the Pope continues to wave to the crowd. He reaches the edge of the stadium and descends steps into a dugout as the procession of other clegy members, dressed in scarlet, continues. The Pope has left the stadium, according to commentators.

This concludes my visual description of Pope Benedict XVI's first Mass in the US.

Inside Out

One of my friends called last night and told me she was on her way to the gym to go swimming. She asked what I was doing and I replied "Going for a walk."

"Walk?" she said. "That sounds funny, considering."

A few years ago I might have engaged her in a conversation about it, but I was eager to get outside and have my walk.

I know that language and disability is a topic that doesn't get discussed often enough. One reason that I think it's important to write about is that some people have told me they "don't know what to say" around people with disabilities and even using a word like "walk" can feel awkward to them because, they say, I might feel offended by it. What strikes me about this is that our society has somehow mixed up what are offensive words or terms with those which are innocuous. We're caught in a loop of sweating the small stuff and it turns language inside out. And, ironically, in some peoples' zeal to be politically correct, they try to correct my language too.

I have been known to say to another friend (in a wheelchair or not) something along the lines of "Let's go for a roll", but usually I'll say "Let's go for a walk." It doesn't matter to me because the words have the same meaning. The word walk as a noun is different than a verb when I say I'm going for a walk, first of all. I can go for a walk (noun) in a wheelchair. That doesn't mean I'm going to walk (verb).

However, I am going to experience the walk-noun in very similar ways as if I was walking. (See Nature on a Joy Stick below). There are differences because I'm not walking-verb, but I know everyone experiences a walk-noun differently. And so, although I could create a new term for "going on a walk in a wheelchair" or just even say that very long phrase, I prefer saying I'm going for a walk.

This probably sounds like a semantic exercise to some and I can understand that, but here's where it matters: how the words "I'm going for a walk" are perceived when a wheelchair user says them can be attributed to the way people think about disability.

Some folks say things that seem to try to get me back inside when I'm outside. I find these comments much more offensive than whether someone uses a word like walk around me, because of their implications and the assumptions behind them.

"I hope you carry a cell phone" a woman says in an ominous tone as she passes me by. Yeah and flares too. "Are you sure that it's safe to cross the streets?" another asks as we wait for traffic to clear. (What's her plan - to fly across?) And then there's this one: "Aren't you worried about tipping over?" I guarantee you that people who are walking are more likely to trip than me tip.

Being out and about, which is what taking a walk is, is a part of the experience of having a disability just as much as for someone who is living without a disability. So when some people act surprised that I'm taking a walk or say that the phrase "I'm taking a walk" sounds funny, I think it goes more to the perception that people with a disability can't do such things.

So the next time you worry about what words you use, remember this: using the same terminology can be a way to turn assumptions inside out.

Nature on a Joy Stick

The squirrel's round white belly
Draws my eye
Small and silver
He stares
Before darting up a tree
Surprisingly agile


The robin stands proudly
Daring me to draw near
A rust colored, black eyed
Rebel in a bird suit


My neighbor thinks out loud
That the grass is better this year
A wet winter, she says
Showing me her garden
In an expansive gesture


I encounter no other life form
On the crooked stretch of sidewalk
Between her house and mine.
My chair hums, the tires lifting me over bumps
I notice the cherry trees are in full bloom
And cross the street to ride under them
Back and forth


I feel full

On a
Joy stick