There's the sidewalk!

The stalwart snowplow guys just left. Today they snowplowed the sidewalk down to some cement for the first time in a month or so. Of course it's not wide enough for a wheelchair so I can't get around the yard. The snow is piled over three feet high out there. So the sidewalk looks like a tunnel.

We're in a 48 hour winter storm warning. Last night there was snow and today through tomorrows evening rush we're expecting ice storms and mix on top of it.

I mention all this because it becomes clearer to me the more the snow falls how little awareness people have what havoc a failure to properly clear snow causes for disabled folks. This is especially true in a winter when assuming the snow will melt in a few days is a fallacy. our ground here hasn't been clear since mid December and my mobility has become an expensive proposition requiring more assistance because of failure to shovel out accessible parking for six weeks by some places, failure to clear sidewalks requiring street travel, etc.

I'm seeing articles in the papers about this. A law student in Philadelphia spoke out about not being able to get to class due to poor cleaning of streets and sidewalks including curb cuts. People can't get to the doctors, grocery store and oh there's work. When it costs more to get to work than it pays and that goes on for weeks, I think we all need to revisit our ideas that we support the idea of people with disabilities working and being productive.

Really? Take a look -a hard look - at the width of sidewalks shoveled , the buried curb cuts and accessible parking spots. When we bury those paths of access for weeks on end, we bury a lot more than we may think at first glance .

[image description: a photo from inside a door with crossed wire boxes covering it, showing a narrow path through the snow]

Suspension after passenger films train employee's refusal to help him board

If you've ever had a bus or train employee refuse to assist you in boarding with a ramp or a lift, you'll be glad to see that action was taken after it happened. An employee in Manchester was suspended after refusing to help a passenger board who needed a ramp after the passenger filmed him. This video shows how difficult it can be to get assistance boarding transit and how unpredictable that help is. Employees argued with the disabled person, citing law and telling him that the police would be coming to try to intimidate the person.



When this happens to me , I always think how they could just go get the ramp or lower it by the time they waste all that energy arguing with me.

Incidents like this happen, where passengers with disabilities are refused assistance and get to their destinations late or are left stranded. It's good to see that action was taken, but not everyone can film it when it happens.

More on this story here.

FreeWheel - all terrain third wheel for manual wheelchairs

Two of my friends who use manual chairs tried the FreeWheel out at the May disability expo and each bought one. The device can be stored behind your chair and attaches easily to the front, lifting the chair up for better clearance off road.



You can find more information here.

UPDATE: another video showing use of the FreeWheel

When an editor walks to work: pedestrian advocacy issues

Mary Newsom, the associate editor of the Charlotte Observer, wrote a great piece on pedestrian safety today that should interest all of us. It's entitled "Walk this way. If you can" and includes a list of obstructions and safety concerns she discovered while walking to work once a week since mid-March.

These include unkempt sidewalks with overgrown plants, mud and leaves; sidewalks blocked by garbage bins; what she refers to as "baffling pedestrian lights", some of which are too long a wait or too few and far between; and 'sidewalk closed' signs. A photo shows how a sidewalk is narrowed by growing ivy.

What's interesting about this piece is how many of the same concerns pedestrians share, whether on foot, in a wheelchair, with a guidedog or cane, or pushing a carriage. Many of these issues go unnoticed when people drive by in cars every day. They're unaware of impassable or nonexistent sidewalks and wonder why pedestrians resort to going into the street.

I echo her observation about how property owners don't seem to realize the need to keep their sidewalks clear. This not only includes snow and leaf removal, but protruding bushes and branches and other objects which narrow the walkway so much that it's impassable. Minor overgrowth is one thing- thorny bushes that eat up more than half a sidewalk width need attention.

Finally, Newsom mentions that drivers "can be oblivious to pedestrians. Many ignore the state law giving pedestrians the right of way in crosswalks". She also notes that no pedestrian advocacy group exists.

I also want to mention that drivers need to be aware that areas which are under construction present dangerous pedestrian issues. Sidewalks are often blocked. Street lines may not yet be repainted. Alternative pedestrian routes aren't marked the way alternative driving routes are in these situations, so a pedestrian is left stranded trying to figure out the safest way to get around.

This kind of awareness helps to keep all of us safe. Although I often write about it from a wheelchair user's point of view, this article is a great reminder of how many pedestrian issues we all share in common.

It's certainly sad to see in the comments that people fail to realize that there are pedestrians who have no alternative transportation, like many in the disability community. As paratransit cuts continue to bite into the right to mobility for many, these concerns need to be addressed.

Read more: http://www.charlotteobserver.com/2010/06/27/1527127/walk-this-way-if-you-can.html#ixzz0s3lWGZRQ

It's about respect - and mobility

This video talks about the lack of respect by those who violate handicap parking laws. I liked it because the speaker mentions the impact on his life- how he has to drive around to find spots because of violators who are taking up the spots.



Of course, those of us with disabilities who have transportation are the lucky ones. Not to minimize the problem of being late or missing appointments because we have to drive around to find a place where we can get out of our cars-and sometimes can't, but there are many more who face serious danger trying to get around in their wheelchairs on roads that aren't built for wheelchair pedestrians.

As I was reading the news this morning, I saw several articles about wheelchair pedestrians in accidents. Sadly, this is daily fare. One wheelchair user was stuck on the tracks near Chicago, but fortunately didn't touch the electrified third rail. Then there are the fatalities. The wheelchair users who wind up dead with photos of their wrecked and twisted chairs in an article that usually reads: Wheelchair user killed. Blind pedestrian hit by car. Sometimes there isn't even a name. I hate that the most, when the person isn't even named.

So often I hear people say that wheelchair users or blind pedestrians (or others with disabilities) shouldn't be here or there. Of course, that's easy to say if you don't face paratransit cuts that are becoming deeper all the time.

But none of these stories mention that.

And, as I said before, every day these stories are in the news. That's because many of our streets- including sidewalks, curbcuts, intersections , and bus stops - are built only for speeding cars.

I ask you to check out the National Complete Streets Coalition.

Now, in communities across the country, a movement is growing to complete the streets. States, cities and towns are asking their planners and engineers to build road networks that are safer, more livable, and welcoming to everyone.

Instituting a complete streets policy ensures that transportation planners and engineers consistently design and operate the entire roadway with all users in mind - including bicyclists, public transportation vehicles and riders, and pedestrians of all ages and abilities.

It's not just for people with disabilities, but for bicyclists, all pedestrians, motorcyclists and others.

If you're concerned, learn more about it here.

Or check out this slideshow:

Introduction to Complete Streets

View more presentations from National Complete Streets Coalition.

Whirlwind Wheelchairs: thousands of wheelchairs needed in Haiti

via Rolling Rains Report :

Whirlwind Wheelchairs is rushing an order of their durable rough terrain wheelchairs (called the Rough Rider) down to Haiti - their chairs are good quality and will work in the environment. You can learn more about them in this video.






Each chair costs $220 and they are raising $22,000 for the first order. Please help if you can.

You can donate at Whirlwind Wheelchair here.

Planes, trains and automobiles: shoveling out

The heavy snowfall and cold temperatures worldwide are causing global transportation problems. Road salt that had built up on a utility pole resulted in a fire that blacked out electricity to Cleveland Hopkins international Airport, canceling flights and playing havoc with schedules.

Then there's the train from hell, as some are referring to an Amtrak train that pulled in to Chicago with a 19 hour delay with "tired, hungry and stinky" passengers because of the severe weather.

In Germany, over 160 people found themselves stuck in their cars overnight as a result of heavy snow.

In the UK, grit levels are "critically low as more snow heads in". This is causing particular havoc for people with mobility problems due to physical disability, who are stuck in their homes. They've even started a hash tag on twitter called #disabilitysnow .

The interesting part about the Internet and the disability community is how it provides a way for people who live alone to reach out to each other when things like this happen. What may be an inconvenience for some non-disabled people, quickly turns into a situation where a disabled person becomes immobile. (This, of course, is also true for some elderly people.) Whether it's ice and snow blocking curbcuts, driveways, bus stops and sidewalks or extremely cold temperatures that make it dangerous or impossible to travel outside for some, this is a great time to to check in with those who may need groceries or other items.

Here's one video taken by a woman who uses a wheelchair. After two hours of trying to shovel herself out of her home, she set up the camera to continue filming. Instead, the camera caught her neighbors who came over with a snow blower and shovels to help her out and she uploaded this high-speed version.

Seniors' falls from walkers and canes studied

A study showing that over 47,000 seniors are treated for falls annually from walkers and canes stated that more need to be shown how to properly use the devices safely, suggesting doctors do so prior to prescribing the mobility devices.

I have another take on this issue. I can't tell you the number of times I've been out and seen folks using canes or walkers when they clearly appear to be in need of a wheelchair. They may lack balance or the stamina, causing them to veer or stumble in a crowd. I'm not questioning the selection of the device for them some of the time, but it's clearly not working out in public in crowds.

I know many of my friends with long term disabilities use more than one type of mobility device, so when I see this, it makes me wonder if doctors are suggesting to seniors that a scooter or wheelchair might be a good idea for longer distances, although a cane or walker works at home. Such an approach might not only prevent falls, but maximizes the mobility of the person. It may conserve their energy so that when they are home alone, they are less likely to fall.

In order for this approach to work, however, we need to get beyond the stigma of using certain devices and certainly have to stop treating their use as an indication of not trying hard enough or failing at recovery. Certainly maximizing function is a good thing, but it becomes counterproductive when someone suffers multiple falls and resultant injuries, as I often see.

Long term care and health care reform and the entanglements therein

A friend told me yesterday that her brother in law is a retired Maine lobsterman.

Now being a lobsterman also means having to deal with regulations, like those from whale advocates who want to reduce the number of traps a lobsterman can set. Lobster catchers are saying it's not the number of traps set that are the problem, but the rope that's used.

So why is this all reminding me of current discussions about long term care and health care reform? Whenever I hear proposed solutions, such as changes to the Medicaid Home Based and Community Care waivers, I keep thinking of people with disabilities I know who will get caught in traps or fall through the gaps of the parameters set. I'm concerned that those proposing these laws are too far removed from the actual experience of living with a disability - and trying to afford it- to understand that we don't want to be squeezed into programs we were trying to avoid in the first place by working.

As they discuss solutions to our future, it behooves members of the disability community to remember that we are going to have to live with the regulations that get put into effect. Some might be worrying about the number of lobster traps when they should be worried about rope. And, well meaning as all of this discussion might be, as long as we stay in the mindset of regulating what should be a civil right to live in the community, there will be people with disabilities who apparently have less rights than whales who get entangled in rope.

We need to make community, not institutionalized, care a reality with the Community Choice Act. It's more cost effective. But regulating it shouldn't be about setting up a complicated, convoluted system of qualification that will inevitably shut out people or- worse yet- force people into Medicaid. That's like laying rope that will entangle them. The real problems stem from issues like the high cost of equipment to stay mobile, equipment that is necessary to work but not available through programs designed for those who don't work. If we ignore factors like that, we are going to perpetuate the incentive to not work. If someone who works also pays into a program, is responsible for paying for expensive equipment on loans, then at what point does it break them financially? Ironically, this leads me to argue, even though I've always wanted to work and have worked, for legislation that simply acknowledges the high cost of equipment that isn't covered so you can work. This saddens me because I'd rather see the costs of living with a disability reduced so those of us with disabilities could work and pay for what we need, but we've created a system that has costs so high it's virtually impossible if you require both care and equipment.

I have grave concerns about every legislation I've read other than Senator Kennedy's proposed plan years ago, the CLASS Act of 2007 that would create an insurance program for people who become functionally disabled. It would provide a cash benefit to obtain services and supports so people could stay in the community, based on independence, choice and empowerment.

That's what many of us need - a predictable plan that would let us plan our finances in a way that acknowledges the extremely high cost of living with a disability. If we aren't going to get rid of those high costs in other ways (which it appears we are not), such a program could be expanded to cover those with disabilities (not just those who acquire disabilities, but those born with disabilities as well), and it would provide choices. Other proposed solutions have huge gaps.

Specifically, those pieces of equipment needed for mobility (i.e. wheelchair, accessible vehicle, guide dogs) are not being discussed as part of this equation. We must address these issues as part of this discussion because without mobility there is no work force among people with disabilities and we are back to a system that cares for us, rather than caring about our quality of life. If we can't get from Point A to Point B, we aren't going to have jobs.

Let's not rush toward legislation before we know what's entangling people here. The disability community is very diverse and the problems in forming such legislation are as well. I sincerely doubt that one solution will fit all. Take, for example, friends of mine with disabilities who are married to an able bodied spouse who need no care at home and may work part time but get insurance through their spouse. They don't see the problem at all - yet. Not until aging is an issue perhaps, or a spouse dies or something untoward happens. If they need a piece of equipment, the money is there to finance it. So they buy it. If their insurers deny a claim for a wheelchair, they finance it. They aren't even imagining that they will have to go on Medicaid to get care. So when they read about long term care and health care, it's not a huge concern to them. The same is true for those who live with their families.

It's a very different situation for a single person who does need care, even when he works. Are we going to continue with a system that makes it almost impossible to afford to work if you have a disability that requires care and equipment or are we out to make real change here? Because changes that just perpetuate the status quo for those in certain hierarchies of disability aren't solutions - or an improvement- at all.

Bus route closings affect most vulnerable

Those with disabilities and the poor are devastated by the cutbacks to bus routes in the St. Louis area, eliminating their only form of transportation, reports CNN. A reporter who rode the route writes about a couple in wheelchairs who are losing their form of transportation, as the result of one of two dozen routes being cut as of March 30. [Related: Commuters Already Trying to Cope Before Cutbacks]

Riding the buses this week offered a glimpse at the impact.

At one stop Wednesday, a handful of developmentally disabled passengers boarded outside a local facility where they work. One told CNN she optimistic "something will get done about it" but said she isn't sure how she is supposed to get around after Friday.

200 drivers will also lose their jobs. The stimulus money, the reporter noted, can't be used for operational costs.

Wonder in the van

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

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

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

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

Living with my disability has taught me about wonder.

Standing by

When I heard about Obama's train trip, I remembered the day my father took all of us to watch as Bobby Kennedy made his final journey by train to Washington after his assassination.

We piled into our station wagon. Our mood turned solemn as we joined the silent group standing by the tracks. A few people were wiping their eyes.

My father gazed into the distance, squinting. He had calculated the exact time the train would arrive and, considering his father was a train engineer, I figured he'd be right.

He was. The train appeared on the horizon. It was not traveling fast, nor was it traveling slowly. It seemed surreal, as if the train was floating by. I saw the black bunting and thought I saw a few figures move near the windows. A hand inside waved at the silent crowd.

Moments later as the train chugged into the distance, everyone began to walk back to their cars. "Who was that?" people asked, guessing, naming members of the Kennedy family. "Teddy? Ethel?"

"This is history, kids," my father said, as we trooped back into the car. "This is something you'll always remember."

There are other history lessons I've learned since then, lessons about disability history, for example. I've learned that people with disabilities are still struggling to be included in public events, to be a part of, to have access and achieve the simple act of being able to show up.

I hope many people have the chance to be a part of the upcoming inaugural events. And I pray that future generations of people with disabilities will have a better chance to attend the inauguration. Because what I'll remember from this inauguration is how exclusion because of lack of access and inadequate transportation results in so many people with disabilities not being able to stand by and witness events. And that feels surreal too.

[photo from JFK News and Updates]

[image description: A crowd stands along the train tracks waiting for Robert Kennedy's body as he was transported to Washington DC after his assassination. The crowd includes several nuns, Catholic schoolgirls in uniform, and several families. In the background is a parking lot with cars.]

Stolen Scooter: Spread the Word

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

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

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

How did we all get here

Yesterday , while Meredith was running into New York to sign books, I was telling her about the number of people I've been running into this past week who I haven't seen in a few years. And I was in a testy mood because of it. It hasn't been easy figuring out what to say, if anything , to some people who look so shocked to run into me.

These would be the people who I didn't see because I didn't have independent transportation. The folks who sent invitations along with the phrase "...if you can get here yourself". The ones who stopped calling months ago.

"How did you get here?" one person asked me when she ran into me at a store.

"I teleported," I said, smiling.

When I went into a power chair, the exodus of folks from my life was of biblical proportions: now if I was included, I had to be transported. And I found out very quickly that it wasn't a happening thing for most people. This surprised a friend of mine, who pointed out that my manual chair was very lightweight, easily put in a car and I could be pushed in it.

Of course, that is all true. But it's not always about what effort is involved, but expectations, attitudes, perceptions.

Until I ran into this transportation issue with a power chair, I never realized that my life would become so circumscribed by how people reacted and the shamefully low level of available transportation options.

How did you get here? to a power chair user in America is not so much a question that deserves a quip as an answer, but a weeklong discussion in Washington DC .

How did we all get here?

How did we get to a place where the perception of inconvenience - and some work- keeps people literally homebound? Why are we in a place where accessible vans cost 50 thousand dollars, yet accessible mass transit is still not a viable solution in many places for so many people?

I know now that until we ask the question as a group - as Americans- who have elderly parents, family members, neighbors, church members and friends - who will be and are affected by this, it won't be answered. Not until we make a concerted effort to give the right of mobility.

On my sidebar there's a Call to action, asking people to email Obama with issues of concern related to the disability community. If you share concerns about housing or transportation, equipment or assistance, if your eyes are open about these things, then take a moment and write in. Speaking up about all of these basic needs is vital to planning solutions.

And maybe one day instead of asking a power chair user or a person with disability the question How did you get here? , the question will become How can we all get there?

Blink and you miss it.....

My friend from Delaware drove up this weekend and we attached the various safety belts inside the van, hung up the CD holder, worked on my power chair so I could transfer into the van seat and then set out for Mexican food to celebrate.

"Where are we going now?" my friend asked as we left the restaurant.

I drew a blank. Hard to explain that, other than the fact that it's been a while that the wanting of going a place has been followed with the ability to do it. Hard to fathom that suddently I can go anywhere , anytime, that in the blink of an eye, it's all changed.

This is the same friend who taught me how to use a wheelchair from her own wheelchair. She taught me that brakes on a wheelchair aren't used to stop, but applied when you get in and out of the wheelchair. She led me down streets with lousy curbcuts and sidewalks and showed me how to traverse them. When I hesitated, she kept going, glancing over her shoulder, pulling out ahead but staying in sight, setting a pace. "Come on," she said. I had to set aside my fears and follow her to keep up. Not like I could get out of the wheelchair and walk. When I caught up to her, she said "You're getting faster" and pulled out ahead again. Tough love.

We got into the van, deploying the ramp, transferring into our seats. My mind was still blank. I couldn't think of anywhere to go.

She waited. I was navigating a different terrain now, an internal one, one that in some ways was more difficult, one that she understood and knew. It was a full ten minutes after she asked me where we were going that I finally answered her. It took five minutes before I answered her the next time. A minute after that.

And then, suddenly, it hit me. She was setting a pace, then waiting for me.

When we got back home, we said goodbye and she rolled up the ramp into her car. Just as she did after she taught me how to use my wheelchair, she said "I think you're good now."

After she left, I got back in the van and drove somewhere. Didn't think about it much at all.

Kind of happened in the blink of an eye.

When mobility is a dream

Remember Christmas when you were a kid? You'd wake up early and sneak down to the tree to check your presents. The last few mornings, I've been waking up at 5 a.m. The first thing I do is look outside to see if it's real. And, yes, it is. There's a mobility van out there. Like Christmas morning, I don't go back to bed. I sit, amazed, and these words of C.S. Lewis come to mind:

The waking world is judged more real because it can thus contain the dreaming world: the dreaming world is judged less real because it cannot contain the waking one.

I am in the waking world, I tell myself. The dream I had of mobility is now part of the waking world. And then I look again.

I used to assume mobility was a right, but have learned that, for people with disabilities, it's still a privilege. When you use a power chair and need an accessible vehicle, if you can't afford the equipment, you don't get mobility of the kind others take for granted.

Yet in the waking world, your dream of mobility is with you all the time. If you go somewhere in a car, you sit in a manual wheelchair, unable to push yourself, to move independently, your autonomy denied. In your power chair , you sit watching cars pass by, knowing they won't hold you and your chair and can't take you places where others are free to go.

Maybe you don't think of words like right and privilege, but you dream of mobility. And, sometimes, it hurts. You scream down alleys but the only echo in the waking world is a voice saying this is the way it is.

When you sleep, you dream of flying carpets, teleportation, magic. You wake up and know it would take far less than magic to have mobility, but is far less likely to happen.

This is the way it is.

Every time we treat mobility as a privilege, not a right, we teach that physical limits carry a myriad of other limits with them, that people with disabilities should leave their dreams in the dreaming world and not dare to carry them into the waking world.

Yet the waking world is the only place where dreams can become real, where mobility can become a right. And to say this is the way it is keeps mobility in the category of privilege, kills hope, denies equality.

Perhaps I wake up early now because I know the limits of the dream world. I need the waking world to change the way it is.

Dreams matter.

What a broken wheelchair means

Dave writes movingly in his post I Cease to Be, about the effect of a broken wheelchair and the unavailability of a replacement on his life - even for one day.

Then there's 11 year old Stephanie, who ran into red tape and couldn't get to school because of a broken wheelchair.

There's also waiting for the wheelchair guy, leaving you kind of stuck.

Plenty more folks in that boat.

God bless the folks out there who do understand and work hard to fix broken wheelchairs

and find other ways to keep us rolling.

The Holy Spirit rolls in

The "Holy Spirit" is sitting outside. It is what I am calling the new used accessible white Dodge van that arrived yesterday. And it is waiting for me to ride on its wings.

After a locksmith and two battery jumps on various cars, including the one I traded in, and three calls to road service,, the van got off the truck, my old car got on the truck and I sat in the rain looking at the difference between being able to continue to work or not - accessible transportation.

For me, paratransit doesn't work. I don't have a job where I can predict where I have to go and when. It's impossible for me to give advance notice to schedule a location and still be able to do what I have to do my job effectively. And mass transit around here takes you to the malls. Period. Not to the myriad of places I need to go. I also don't have family available who can assist me in getting my equipment into a car to take me out on weekends or holidays, for errands, doctor's appointments, etc. Places I can't get any other way. And since I need a power chair to independently get around, the reality is if I go in someone's car I have to be pushed, which makes the pool of folks who can and will do that pretty small. I understand.

So here I sit this morning, my world transformed yet again. This is big. This is huge.

I have no idea where to go first. I rolled on and off of it yesterday, late and sat there in disbelief. A teenager passed by while the ramp was deployed. She peered inside the van, said "Cool," and kept walking. She had no idea she was watching the Holy Spirit at work.

I know. It takes my breath away how people are smart enough to figure out ways to help me without giving me charity and taking away my dignity. I am blessed because I work for what I get and am able to do that. Sometimes, like this morning, I get a glimpse of what a miracle it is when the impossible becomes possible with the help of friends, God and faith.

Yeah, I know it's just a minivan to everyone else. But I can get on it with a power chair, disability and all, paralysis and such notwithstanding- independently. Therein lies the difference between dignity and dependence, between self actualization and waste, between productivity and warehousing, between networking and isolation.

When our society gets that, really gets that, perhaps more people will be moved to help people with disabilities in ways that aren't about charity, but about dignity. I can only hope and pray, which, I've learned, does sometimes work.

The wheels on the bus go round and round...

Picture this.

The bus pulls up. The driver looks at your power chair and says "Oh, I never operated the lift before" and then proceeds to prove that point by having to move the bus several times so the lift will go down properly. The driver then radios in that the bus will be late because there is a passenger in a wheelchair.

The other people on the bus start complaining. "Do you have to take her?" "How long will this take?" "Why can't she wait for the next bus?" "Just pull away, leave her."

"Sorry, folks, can't do that," the driver says.

So it does no good to take these things personally. After all, the other passengers just want to get on their way. Who can expect them to be happy with waiting while a bus is repositioned to drop a lift? But on your first ride, the lift was lowered and your chair was strapped down within three minutes. You know this long delay is caused by the lack of training of the driver.

You get on the lift. The driver raises it and tells you to hold on to the sides. You can't hold on, because you have quadriplegia and your arms are paralyzed, but you know she doesn't know what that is, so you just move your upper body a bit which, luckily, satisfies her. And, luckily, although the lift ride is shaky, you get onto the bus okay.

The fun continues. The driver has no idea how to strap your power chair onto the bus although your chair has tie down markings with yellow stickers. She asks you to point them out but, again, your arms are paralyzed and the tie downs are behind your chair and low in front of you and you can't make that movement.

You do not think "Oh I wish I wasn't paralyzed." You think "I wish someone had trained this driver properly. What good is the equipment if there's no training?"

This is your second bus ride in your power chair, on the way home after your first ride.

A college student on the bus behind you shows the driver where the little yellow tie downs are and assists the driver in securing the ties. This takes another five to ten minutes.

While this is going on, passengers make comments about picking up a person in a wheelchair. Big surprise. They think it was a mistake.

The bus takes off after an approximate delay of twelve to fifteen minutes, more than triple the time it took on the first ride. As one passenger disembarks, he says to you "Hope you're never taking the same bus I take ever again."

You know you will. Because you have to get around, just like him.

Sometimes parents drop the ball

...so I walked with my friend S and her guide dog over to the store so she could get some. Cappucino. And an interesting thing happened. It's called teaching kids how to act around people with disabilities. Sometimes parents just drop the ball.

The store is in an outside mall and kids were playing ball on the wide sidewalks. This is, under the best circumstances, not a good idea, but that's what was happening. Their parents were standing there. We approached, my friend S, her guide dog and me in the Beast, my power chair.

We were coming around the mall, which is in a rectangle, so this took awhile.

By the time we were almost there, I realized I was going to have to say something so we could pass by so I said "Excuse me" in a loud voice. The kids looked. The parents looked. The kids looked at the parents. They started throwing the balls again, so I said "You need to stop throwing the balls until we pass by, thank you." And the kids stopped throwing the balls.

When we turned around to come back, the kids saw us and stopped tossing the balls. On their own.

I know parents are busy. I realize they're watching a number of kids and all kinds of other things are going on. But common courtesy, which is really what this boils down to, matters.

There was an eight year old bilateral above the knee amputee using a manual chair racing around the mall last night. We said hi. He told me none of the kids would play with him. I saw him go over to this group of kids a few times, sit on the sideline, watching. No one spoke to him. His mother stood by me, watching, crying. She spoke very little English and said to me "I don't know how to fix this for him."

I called him over and told him to pick up a ball and toss it back. To show them he could play. He zoomed over and did that and soon was playing. He gave me a thumbs up.

Kids are quick learners.