Sunday, January 30, 2011

Thank you

A grateful thank you to my readers and friends who helped me get an accessible thermostat installed . It's working and needed this cold winter.

Saturday, January 29, 2011

C5-C6 quadriplegic plays Hallelujah on piano

This video posted by a C5-6 quadriplegic shows how he plays the piano with the side of his hands. Beautiful piece.

No Fault Bullying

Yesterday a group of preteen boys on their way home from school passed by outside. Two of them threw the third into a high mound of snow, screaming at him. I couldn't make out the words, but they sounded threatening as they stood over him. I couldn't see if they were roughing him up but feared they would. I was about to call the police when the two boys standing over the third began to run down the block and the third rose unsteadily, shook the snow off and followed them.

Then I saw a police car cruising by. I'm guessing a neighbor called.

I'm glad that the situation was broken up but it reminded me of the fact that often bullies and the bullied run from authority figures. It's not that the bullied couldn't have explained what happened, but that he chose not to. Perhaps he feared retaliation. Based on what I saw that would be a reasonable reaction - let's not make this worse.

Of course running doesn't make it better either.

A stark reminder that between 17 and 19% of children reported being bullied on a weekly basis in their schools or neighborhoods

Thursday, January 27, 2011

A Fire, Facebook and a Man with MD


Bob Chambers, who has muscular dystrophy, was online playing a game on Facebook when a fire started in his kitchen. He provided his address on Facebook and others summoned help for him.

Luckily Bob had access to the internet and a way to reach out for help. Far too many people with disabilities can't afford to connect.

Meredith drew my attention to this article by Susannah Fox discussing the Pew report about people with disabilities and access to the media. It talks about barriers to the internet for disabled people and the need to develop low cost accessible hardware and software technology. Worth a read.

I'm glad Bob is doing okay and hope he has a speedy recovery.

Wednesday, January 26, 2011

And snow it goes

In the world of weathermen I suppose having a forecast thats wrong here and there is understandable. Today not only was the timing of the snowfall predicted wrong, but the amount as well.

I woke up to a blanket of the white stuff that wasn't supposed to be here yet. Having scheduled aides to come over I had to reschedule and cancel and all that. The snow kept falling all morning. Schools started scheduling early dismissals. Snow plows, I'm told, lined up hours earlier than expected on the highways and roads.

According to my sister, the only thing newscasters had to say this morning about the forecast was that it was blustery out.

So for all those who had to deal with the bluster that looks like about four to six inches of snow already to me, just remember they say there's more coming later.


Tuesday, January 25, 2011

The myth of overcoming disability

Anyone else watching the PBS series Downton Abbey?

Being this is a historical series, it's not surprising that where a disabled character is introduced, someone decides to write in an episode about overcoming disability. It's reflective of those times.

Oh wait. It's still happening.

Anyway, there were hints of this in episode 1, where the staff debated whether the character could do his job properly and almost got him fired. In episode two, Bates, the newly hired valet with a leg injury from an old war injury, decides to try out a brace to "overcome his lameness".

I don't want to post spoilers, but the series seems to "overcome" the usual "overcoming" myth by the end of episode 2. By episode 3, Bates' disability is dealt with again in a relationship, so we'll see how that evolves.

You can watch episode 2 and the rest of the series here.

Sunday, January 23, 2011

Friday, January 21, 2011

The aide who came in from the cold

There's a commercial on tv by Bayada Nurses showing a disabled man in a wheelchair waiting in a snowstorm for a nurse to arrive. She pulls up, comes inside and there are smiles all around.

Although this may spot seem overly dramatic to some, I've always felt this commercial hits the mark in some ways. No music plays, no cameras whir, but smiles do happen. For those of us who need aides or nurses, it's an issue finding folks who are willing to travel in all kinds of weather. Fortunately I have few disruptions in my care due to this and appreciate that people show up .

This reminds me of a day Meredith trudged over in near blizzard conditions, opened the door and stood there for a moment, then said she forgot something and had to come back. When I asked what she said "Chocolate!"

Yes, she was serious.

Thursday, January 20, 2011

Snow removal and wheelchair pedestrians

I was reading the other day about plans for glass road systems that would melt snow and ice for future generations. and then I did a little more reading about other ideas inventors have had to get rid of winter precipitation

These ideas are being touted as a way to save cities and municipalities a lot of money on snow and ice removal. It occurred to me as I looked out the window at the snow covered ground that this could be life changing for the mobility of disabled folks if the needs of pedestrians are taken into account as well as that of drivers.

The sidewalks are are mostly impassable and have been for the better part of a month since the snow blowers leave a path too narrow for a wheelchair unless the user knows to make the path wider. Most don't seem to. There are debates about whether wheelchair users should use the streets when sidewalks are impassable. I always find that interesting because when streets are closed for repairs, alternative routes are posted. Pedestrians in wheelchairs have nowhere else to go but the street when facing walls of snow. If they need to get to the bus stop,store or doctor, they may be able to wait a few days but when the ground is covered by large amounts of frozen snow leaving narrow paths for weeks on end, such debates become ludicrous.

I hope planners take pedestrian needs into account with these new systems for this reason.

Tuesday, January 18, 2011

Did you really just say that?

An excerpt from an article by a woman with a disability about how some react to her appearance.

When you have a physical difference, deformity or disability, it's as though your privacy is lost and people feel they have the right to intrude - stare, ask questions, offer advice and comment at their own liberty. It's akin to pregnant women having their tummies touched by strangers. Except it goes on longer than nine months.

You can read the rest here.

Saturday, January 15, 2011

Having the coffee set up

I'll bet a lot of people don't think much about getting themselves a cup of coffee in the morning. I didn't either until I acquired my spinal cord injury

At that point I learned that planning was key to having independence. If someone sets up what I need I can make a cup of coffee, for example. If I have a certain kind of coffee maker and that assistance, I can do what others do.

I hear and read stories all the time about what a tragedy disability is. That's just not true in my experience. What is tragic is how we still leave folks without what they need to be as independent as possible. Being dependent for things you can do for yourself with planning is limiting and robs people of self esteem. It can also cause more work for caregivers. Its a lose lose situation. I believe that it stems from an attitude that disability is inevitably a sad, tragic and life ending event. That's a ridiculous approach.

Yet every time I train new aides I'm reminded how few people understand how much a disabled person can do with planning.

When I first bring a new aide in, he or she needs to learn the way I do things and, more specifically, how things need to be set up so I can manage to be independent in their absence. At first people move things around, not realizing that leaving a reacher out of reach causes havoc or not setting food up so I can get at it leaves me hungry. They take out a folding chair and leave it in the middle of my kitchen, not realizing that my wheelchair won't roll around it. The list is endless but the bottom line is that once they catch on, they get used to how things need to be done amd it ones as natural to them as the way they set up things in their own home. We all have preferences as to where we keep things. It really isn't any different.

But in order to get to a place of cooperation, everyone needs to be on the same page. Well meaning friends and relatives who place things out of reach assuming we can't do things or patronizingly refuse to set it up the way we need it or keep it that way are more of a disability than our disabilities are.

Need to go drink my coffee now. Always tastes better when I get it myself

Friday, January 14, 2011

Nava's Story: First Ventilated Quad to Sail Alone

Via YouTube:

Freedom Waters Foundation presents this story, originally aired on the Austrailian television program "A Current Affair", of Nava George. Nava is the first quadriplegic person to sail alone. With some training, and a special boat, Nava is able to explore a newly found freedom, sailing by herself.

If you're interested in adaptive sports, visit my other blog We Push Sports for more information or to share your story.

Tuesday, January 11, 2011

The Snow Smile

Our neighbors down South in Atlanta are dealing with a winter storm that brought many of them out to deal with bad roads and such. But some are finding joy in the snow.

Here's a photo of a giant smiley face in the middle of a parking lot at a housing complex with a snow angel to its left. If it loads slow below, here's a link.

The storm's heading our way. Wishing everyone safe thoroughfare and a chance to appreciate nature.

Saturday, January 8, 2011

Wireless headphones for voice recognition

I've broken a few headsets for voice recognition lately. The other night another set of headphones broke. The metal end sprung out of the earpiece toward my right eye. Luckily I was wearing glasses so I wasn't injured but I decided in the interest of safety I better cough up the money for another pair.

I ordered the USB wireless Plantronics audio 995 headset after I saw that it was available online for half the original price, around $50. I haven't had much luck with Bluetooth headphones and I need a wireless setup because my laptop is too heavy to lift when no one's around so I'm dictating at a distance.

I received the headphones, charged them up via the micro USB cord, put the USB dongle in, then turned the power on the headphones. They paired immediately and I didn't have to download any drivers manually on my Vista laptop. When I opened Dragon Naturally Speaking, I scored a 22 without even adjusting volume level so I was pretty pleased with that. So far they've performed very well with voice recognition.

I was curious about how they would work with music so I turned on Pandora. The audio is much better than I expected.

The only downside to these headphones is that you can't use them while they're charging. However they didn't take long to charge and I've been using them about six hours without any decrease in function so as long as I schedule charging them up, that should work.

So if anyone's looking for a set of wireless headphones for voice-recognition that are affordable I'd recommend these.

There's a theme here

Last weeks blizzard barely melted when more snow arrived yesterday. Today we're having more.

It seems everyone is getting more efficient at snow removal. I was about to go out to remind the folks to shovel out enough room for the ramp on the van when I heard the snow blower doing the job already. Drivers are clearing off their cars out of habit, not as a novelty. A neighbors kid went out and bought a super wide shovel with his earnings to pick up more snow faster.

One of my aides skid down the road on her way here but matter of factly noted it would be plowed by the time she got home.

Humans adjust.

We adapt.

And if we adapt so quickly to the weather, why don't we have more faith in each others ability to adapt to living with a disability?

Wednesday, January 5, 2011

Food for thought

Sometimes I watch my kitten eat his dry food. It's not his favorite thing. He prefers wet food. So he scoops up the kitten chow with a paw, surveys it and eats some. Then the next time he scoops up more and chucks it over his shoulder.

This leaves an ever-growing pile of dry food near his bowl. He hasnt figured out yet that I cant clean it up so he keeps doing it. The pile becomes so large and widespread that he has to walk around it to get at his wet food. At times the dry food gets into his wet food, spilling over onto the paper plate.

I attempt to,pick some up or push it around with a quad reacher until someone comes over to help. Meanwhile the kitten continues to toss the dry food around not quite making the connection that he's creating the mess that interferes with enjoying his wet food. It gets under the wheels of my chair too

Not everyone who comes over will clean up the kittens mess. Some folks forget. Others think he'll stop doing it if he gets uncomfortable enough. So the pile can get really high while we debate whether the kitten knows what he's doing.

This isn't a post about government waste and spending. It really is about a kitten who prefers wet food. But maybe there's a message in there about learning good stewardship of resources at our disposal as we grow up and teaching that to our kids They can't count on and shouldn't always expect someone else to clean up a mess they created.

On the other hand common sense dictates that a kitten and a quadriplegic aren't going to be able to clean it up either. A refusal to help until the situation gets so uncomfortable that it's supposed to teach a lesson isn't exactly useful in that kind of scenario.

It can be difficult to separate out a real crunch time from a self made mess. Sometimes humility is called for, to discern when a simple act of service would help.

One can pray about these things while sweeping.

Tuesday, January 4, 2011

Give Me a Q, Give Me a U....

Years ago after I acquired quadriplegia, I bought a book named something along the lines of The Pep Coach. It was a series of short pep talks on various topics aimed to motivate the reader. At the time I felt stuck and really believed that motivation was my problem. It took meeting others with disabilities to understand that what I needed was not a pep talk, but a way to find resources and equipment to work and live.

I was fortunate enough to meet many others with spinal cord injuries while playing adaptive sports. I saw how they worked around real issues such as accessible housing, transportation, specialized computers, and home care if needed. I was astounded to discover that many solutions were out there which up until then no one had told me about. Meanwhile I was, so to speak, spinning my wheels trying to discover solutions, many of which weren't working or were time consuming. I may have appeared unmotivated to friends and family, but the truth was I didn't have what I needed to be mobile and productive.

Anyway my copy of the little pep talk book got lost along the way. Maybe one of my nondisabled friends borrowed it. Who knows? But it taught me a valuable lesson about judging a disabled person's motivation. It's necessary to be careful not to assume that the person is unmotivated prior to investigating whether he/she has access to what's necessary to accomplish a goal, like a wheelchair, a ramp, or other equipment.

Maybe a more useful approach is to forget the pep talks and work on the reality of getting more information, equipment, care and other resources to those who are motivated, but languish in the system.

Saturday, January 1, 2011

Power Wheelchair Comparison Web Series - episode 1

Happy New Year everyone!

Check out this series which helps folks looking for a power chair to compare features and models.