Monday, May 25, 2009

The Best Laid Plans of Mice and Men...

My apologies that I am behind on posting comments and on replying to them. I'll try to be back more soon--last week was a high pain week but also a high activity week--it was Fine Arts week at the kids' school, which meant events every night except Wednesday, on which my daughter had a violin audition for middle school. And double events Monday, barely making it to my son's Cub Scout crossover ceremony on time.

I'm sorry to say it's been a bad pet week or two. My mother-in-law called this morning to say not to come over for lunch, that she was having to put her 9-year-old dog to sleep--kidney failure from Cushing's disease. Thirty minutes later we discovered one of our son's pet mice, Corn, had passed away. My husband thought about pet replacement rather than telling my son since my son grieves so hard about his little pets. When Mousie died when he was six, it just about broke his heart. My son keeps trying to think of what might have caused Corn to die, but she was healthy (so we thought), and very cared for. I feel bad, too, wondering if there's something else we could have done, though I don't think so. Spots, Corn's sister, seems somewhat surprised about being by herself.

Last week, my daughter's aquatic frog that we really thought was going to die at several points before passed away last week. The big tumor this froggy had spontaneously disappeared, and she had many more months, though she couldn't swim a lot at the end. The froggy was a gift from her teacher, so that was hard. Now her betta fish that she's owned for a few years is in grief and doing very poorly. Yes, the aquarium is in good, clean condition, water quality appropriately controlled. I know the betta has a dot sized brain, but he really liked the frog even more than he likes to watch us (always drawing near when we're washing dishes or sitting on the couch--he's in an aquarium on the ledge between our kitchen and living room). The first day was the hardest for him. One of my son's baby African dwarf frogs has been AWOL for a while. The frogs actually have been replaced a few times (shhhhh!). I'm torn between wanting him to know and sparing him unnecessary grief for animals that have very short life spans. Years back, he lost two tadpoles that never turned into frogs but lived an unnaturally long time as tadpoles (almost a year).

As Lene at The Seated View points out, Mercury's been retrograde a while. No, we don't have the house on the market yet though we're making it so far (with fear in our chests)--I don't always remember what I've updated people on here and it would make sense for people to assume that we've been able to do so since I haven't said otherwise. In April I had some other big matters to take care of for most of the month since I didn't want years of work to go down the drain, though we still worked on house projects and ebay too as we could. My pain has been so bad I've been having trouble keeping up with daily tasks, which means my husband must take up more of those. With that, applying for jobs full time (really) and dealing with financial matters, going to several stores to save money (six stores on the list this week, but who can pass up 88 cent Triscuits or Cool Whip for free since the kids eat it with their berries), various applications for all kinds of programs which save money but require a lot of paperwork, we are a bit beat, though we're still muddling through. We have done a lot of ebay though need to do more--setting up auctions can take us a half day on Sundays, then we have packages to mail out Monday and Tuesday. House projects we still have left to do: repaint the trim on the baseboards, scrub and wash the window screens and windows outside and in, clean the light fixtures, clean out the garage, some of my old clothes to a consignment store, ebay more of the kids' clothes (or consignment store--harder to find those for the 'tween ages), retile half-bath, fix trim near bathroom shower, steam clean the carpet, repaint two rooms that really need it. Sigh. If only my pain were less I could keep up with more of the daily tasks so that my husband could keep up with these bigger projects. Yes we can let some things go for a while and do--but even then we are having trouble keeping up. I'm feeling a little overwhelmed by our inabilities sometimes. Yes, we're doing things, but at a turtle's pace. My in-laws are exhausted helping out with my great-grandmother and my parents are not in good health and really can't help a lot physically. My mom has helped get shoes for my son, swimsuits for the kids, and other items that my daughter needs for camp, so yes that helps, so we've been shopping for that. Plus there's been all the kids' activities.

Maybe with April projects and kids' activities winding down we can make more headway soon. Maybe my pain flares will diminish. The past couple of days were a little better, though today's not great.

Thursday, May 21, 2009


Scene: me, sitting on sidewalk in front of a giant Lexus SUV parked on top of the zebra-striped access aisle. I'm waiting to leave and am in a lot of pain.

50ish woman, adopting a pitying, talking-to-a-child voice: "Awwww, I guess you need me to move my car. It must be in your way..."

And to think another mom was worried about parking in the space on the far side of the access aisle and asked me about it! She wasn't sure it was a regular parking space since it wasn't well marked. The access aisle definitely was well painted, though.

In other news, I had to file with the BBB against the medical supply company, which now doesn't acknowledge receipt of the UPS package with the returned wheelchair cushion and thus hasn't sent out a new one. Promises to "find out" and then return our calls go unfulfilled. It's been 8 weeks, damnit. I want a wheelchair cushion that fits so that I can sit up more. This is ridiculous. I even emailed the two co-owners of the firm directly. No response from one, and the other response is inadequate. With 88 complaints in 36 months while similarly sized DME/medical supplies online companies have just 1 or 2, there's something really wrong going on. Do not use Allegro Medical for anything. Use SportAid. Unfortunately Allegro comes up quickly on internet searches for particular products and looks legitimate, especially with that lovely BBB label on the front page. Yes, I ordered my scooter directly from them to save money, but that was a huge problem too, but I thought a single isolated incident. Wrong. Do not use Allegro. They lie. They don't care.

And for goodness' sake, any "ableds" who are reading, teach your children some manners around wheelchair users.

Does this get any easier? Do people just stop caring and resign themselves to second class citizenship? It's emotionally exhausting. The pain is more than enough.

Wednesday, May 20, 2009


pain pain pain pain pain. Am so useless. Husband thinks I should try Enbrel despite what I say about it. They do have financial assistance available. I have really not had a "good" day in a week and a half. I was okay for a few hours this morning, but not now. A few hours is not enough.

Saturday, May 16, 2009

When my twin sister lived in my state, she went to the same rheumatologist I did at the time. Now she doesn't have one. She called yesterday, had been to the doctor about her back pain.

Sister: She did an x-ray. She says my spine pain is from lumbar scoliosis.
Me: But you've always had lumbar scoliosis.
Sister: Yes...
Me: And isn't your pain in the SI joints and hip and not so much the lumbar spine?
Sister: Yes.
Me: Does your pain feel muscular or like bone?
Sister: Very deep pain, in bone. [Me: recognizing severe sacroiliitis.]
Me: You told her you have a sister with spondyloarthropathy and other rheumatologic diagnoses?
Sister: Yes, but she doesn't think that matters since we're not identical. [Me to self: but we're still related and it's inheritable; we're the same age and grew up in the same environment.] And my alkaline phosphatase has been high for five years...

Me: Grrrr

Thursday, May 14, 2009

Shock and awe

We just received a $100 WalMart gift card in the mail from strangers several streets over; the card is unsigned but the street address is on the outside. As far as I know, no neighbors know the situation we're in since we haven't had a chance to talk to people lately and the house is taken care of--looking up the address, this isn't anyone from the kids' school or activities. A humbling random act of kindness that's a reminder to pass it on to others when we can.

I am more concerned about neighbors who aren't running their utilities and have a small "for sale by owner" sign up.

Also, the kids are on CHIP and we don't have to pay even the $50 a year. $3 office visits, discount OTC meds, free prescriptions, free dental and vision, $10 total if hospital admission is needed. Huge savings compared to COBRA copays, premiums, and percentages. They don't need much, thank goodness, but one round of strep throat can set us back at this point. My husband joked, "you're not eligible for CHIP, are you?"

Wednesday, May 13, 2009


I cannot think straight from pain. I always worry people will use this against me (below), though I can manage to get necessities done. Though little is an immediate necessity at a time like this. God, relieve this pain, relieve this pain, relieve this pain.

On Disability Prejudice

We will have guardianship over my uncle, who's developmentally disabled, when my grandparents pass away. He will live with us. My grandparents just obtained guardianship for themselves since that involves yearly investigations of their home (there's always some danger of losing custody based on the whims of the court and their ages and disability) and taking away some of my uncle's rights.

What scares me is that my grandparents' attorney made prima facie judgments about me, stating in casual conversation that my ability to be a guardian would be questioned, gesturing toward the mobility scooter in which I sat. He looked surprised in a negative way when he first saw me--those of you who are disabled know the look some people give when they didn't know you would be disabled, a look that goes beyond surprise--I felt and looked as if I'd been slapped. Ironically, this attorney specializes in guardianship cases for people with disabilities because of his own brother. Later, when I explained my disability, that I raise children, and my grandmother (who likes to brag as grandmothers do) stated what I've done for a living, he looked even more surprised. He later said he didn't think my guardianship would be a problem, but I am still concerned, furious, worried for me and other parents who have disabilities. Do single parents with disabilities routinely have their children taken away from them? Do people get turned down for adoptions or guardianship? After the toddler years, not as much physical caregiving is required and we already have to solve problems creatively to get home tasks done. While there's extra work to care for another person, it's not proportionally that much more over what we must do anyway. It's not as if we by any means live in squalor. I in fact took care of my children myself for a month when we were out of state just before I started researching the scooter. I had a lot of pain, but I did it. Keeping things simple and highly organized and planning ahead helps. If I were single, I would need some help from others, but that's available through friends, family, and other resources.

Why should I have to defend myself based on physical appearance? This is discrimination. Any parent or guardian has the responsibility to admit when they need assistance or cannot parent and there's no reason to prejudicially seek us out, especially when home visits are already required that give a window into his life.

My grandparents told me later they had not said anything about my physical disability. As my rheumatologist pointed out later, if someone who's blind can be governor of New York, why couldn't someone with a disability be a parent or guardian? I really can't think living with me would be worse than living in the state institutions, with a documented history of severe abuse against people with disabilities; there are almost no Medicaid waivers for group homes and this would be the alternative to living with me. I raise children and they're bright, happy, and well. Interdependence among all of us is key.

After the hearing, for the first time ever I heard my uncle express some wishfulness: "If I weren't retarded [his word], I could have got an education and done something." I told him that being a good person is far more important than an education, and that he is.

But yes, attorney, let's question the loving person with the mobility scooter because she's there (despite not being required to be), because obviously people with disabilities are so incompetent that they can't even get to the courthouse or feed themselves or dress up or articulate themselves, much less others or hold an advanced degree, ever work, raise children. Let's instead pretend that the state school where people are beaten, assaulted, neglected is a better or humane option. My grandparents looked relieved this weekend when I said that over my dead body would he not live with family. Members of their church, knowing he has money for retirement--which will cover basic needs if managed very carefully--have been hounding them in order to "help" and implying he has nowhere to go. They keep pressuring my grandparents about their plans and trying to tell them what to do.

Anger. I've just felt anger about this.

Tuesday, May 12, 2009

Sometimes Mothers Amuse Me

My mother called me last night to apologize that the potato salad at Mother's Day lunch wasn't really made by her but was storebought and she was feeling really guilty about it. Her potato salad recipe is outstanding but takes four hours to make a big batch. I told her that was fine, that often I/we don't have the energy to make something that takes a lot of time anymore either. This generation doesn't have such guilt about that though! And this has got to be gendered. While my husband makes great recipes, I just wouldn't see the guilt.

Of course some mothers are very different from mine. Last week we left volleyball practice 30 minutes in because some moms were being rude to me as they don't do when one of my friends is there or can at least ignore then--I mean making fun of me on the basis of disability ("her husband must be SOOOO proud of her" was the last straw). This week we did not attend practice but the coach had to cancel the practice halfway through because some of the girls were being so disrespectful to her. Let me tell you, I know exactly which girls because they are because I've sat through two seasons with them and one of them almost caused us to forfeit our game twice by arguing with the referee or showing her temper. Let me say I know exactly where they're getting their behavior. I hope the coach isn't so unlucky as to have some of the same set next year, but we're changing teams. My friend is coaching (she was on volleyball scholarship in college) and loading the team with people we already know.

Monday, May 11, 2009

Just for fun

Blog meme borrowed from Emma at Wheelchair Princess. I've read a lot in the past year, just not these books. I do have a lot of unfinished books--sometimes other responsibilities call mid-way through. Oh, the guilt!

Bold is read in full
Italic is partially read but unfinished
Anything bold or italic with an asterisk was read at school
And this time round anything in blue be it bold or italic has had it’s status change in the last year.

Jonathan Strange & Mr Norrell
Anna Karenina*
Crime and Punishment*
One Hundred Years of Solitude
Wuthering Heights
The Silmarillion
Life of Pi : a novel
The Name of the Rose
Don Quixote
Moby Dick
Madame Bovary*
The Odyssey*
Pride and Prejudice
Jane Eyre
The Tale of Two Cities*
The Brothers Karamazov
Guns, Germs, and Steel: the fates of human societies
War and Peace
Vanity Fair
The Time Traveler’s Wife
The Iliad
The Blind Assassin
The Kite Runner
Mrs. Dalloway*
Great Expectations*
American Gods
A Heartbreaking Work of Staggering Genius
Atlas Shrugged
Reading Lolita in Tehran : a memoir in books
Memoirs of a Geisha
Wicked : the life and times of the wicked witch of the West
The Canterbury Tales*
The Historian: a novel
A Portrait of the Artist as a Young Man*
Love in the Time of Cholera
Brave New World
The Fountainhead
Foucault’s Pendulum
The Count of Monte Cristo
A Clockwork Orange
Anansi Boys
The Once and Future King
The Grapes of Wrath
The Poisonwood Bible : a novel
Angels & Demons
The Inferno (and Purgatory and Paradise)
The Satanic Verses
Sense and Sensibility
The Picture of Dorian Gray
Mansfield Park
One Flew Over the Cuckoo’s Nest
To the Lighthouse*
Tess of the D’Urbervilles*
Oliver Twist
Gulliver’s Travels*
Les Misérables
The Corrections
The Amazing Adventures of Kavalier and Clay
The Curious Incident of the Dog in the Night-Time
The Prince
The Sound and the Fury*
Angela’s Ashes : a memoir
The God of Small Things
A People’s History of the United States : 1492-present
A Confederacy of Dunces (on my to-read list)
A Short History of Nearly Everything
The Unbearable Lightness of Being (do his others count?)
The Scarlet Letter*
Eats, Shoots & Leaves
The Mists of Avalon
Oryx and Crake : a novel
Collapse : how societies choose to fail or succeed
Cloud Atlas
The Confusion
Northanger Abbey
The Catcher in the Rye*
On the Road
The Hunchback of Notre Dame
Freakonomics : a rogue economist explores the hidden side of everything
Zen and the Art of Motorcycle Maintenance : an inquiry into values
The Aeneid*
Watership Down
Gravity’s Rainbow
The Hobbit
In Cold Blood : a true account of a multiple murder and its consequences
White Teeth (the same as White Fang? if so, yes)
Treasure Island
David Copperfield
The Three Musketeers

Friday, May 8, 2009

Medical Supplies Company

headwall headwall headwall

I'll say more later once I finally get my wheelchair cushion. I think it's finally going to work out thanks to Supracor stepping in on my behalf and dealing with the medical supply company for me. My seat is between sizes (17 inches long, they come in 16 or 18 inches and I didn't know you could custom order a different size). I didn't know to measure seat cushions on the side rather than from the center forward. An even exchange should be easy right, especially when that's the policy? Especially when one calls within an hour of product receipt? Supracor says the cushion should last me 4-5 years even with full-time use. They also recommend washing the cushion every 3 months to rehydrate it (I guess it keeps the materials from cracking). It is a great cushion--it just won't fit in or on my seat due to its curves. The new one will.

The tilt-in-space and desktop and coffee holder have been great. Didn't get the wheelchair pouch because of a processing error--it didn't go through for some reason, then I couldn't reorder it since the reimbursement account no longer existed. At least *that* didn't happen with a larger purchase.

I sure could use the cushion though so I could sit up longer.

To file under "thanks for sharing, Frida": I had 4 cavities filled yesterday, all on the left side, 3 upper. Thanks, Sjogren's, whoever you are, and acid reflux, which apparently leaves characteristic marks. Yesterday I realized that the reason I can't readily floss between some of my back teeth is that I can't apply enough force thanks to hand arthritis (I can still type speedily, why the problem with strength?). My permanent retainer had also come loose on one end and the dentist rebonded it. I didn't think they could fix it and thought I'd have to go to the orthodontist (it's complicated to get it on in the first place). I'm really glad I mentioned that I thought it had. This means insurance is more likely to pay since they don't pay orthodontists. It took him an additional 20-30 minutes to do this (meaning someone else had to wait), but he really didn't want me to have to make another appointment somewhere else or have to come back later because, as he noted, it's difficult to get in and out with a wheelchair and more physically difficult for me. How thoughtful and generous!

For those of you with Sjogren's or dry mouth from other causes, Theraspray is great and I like the feel better than Oral Balance (which I'll still use before bed). They're very different. There are also moisturizing mouthwashes and less drying toothpastes (you don't really realize they are drying until your mouth is like the Sahara some days). And use it. Sorry to be gross, but if you're not producing spit, you'll get cavities *fast.*

I've gone to the same dentist for 32 or 33 years except during college. I had no cavities until I was 22, and then just a small one. I hope he doesn't retire soon and mentioned that--but he doesn't look well. No one wants to ask him personal questions and say, hey, you look bad or anything (lots of family members go to him), but we also don't want him to think we don't care. He did make a joke about trying to get to retirement, not dying first. With a mouth full of tools I couldn't really ask then.

While I like my dentist, I really hate drills, scraping, vibration. Teeth should not vibrate. The scraping tool is an instrument of torture like nails down a blackboard to those of us who are tactilely sensitive. And my back really hurts from holding myself rigid from stress. Thank goodness for those armrests to perch like a cat ready to flee. About ten minutes in, I joked, "I'm ready to go home now." I'm not phobic, but I just really hate it. Or maybe I am phobic--I can't deal with hearing the details of other people's dental work (letting me know they had cavities or particular work is fine; what happens during a root canal or with my sister's loose teeth due to a nerve issue or my mother-in-law's implant, for example, I cannot listen to--maybe I empathize maybe too much). I want to crawl into a fetal position, rock back and forth holding my ears, and seek to escape the conversation. But people won't listen when I'm saying stop stop stop stop stop, I cannot talk about this.

God, let this not happen again.

Note to the frequent google searchers: there is still no "woman sit on a Roho cushion," not last week, not yesterday, not tomorrow, and there are no "naked paramedics" here. My question is how you can even see that it's a Roho cushion when someone's sitting on it. I'm afraid to know. There will not even be a happy woman sitting on a Supracor cushion pictured here. Gee whiz, I guess people really do objectify men, golly.

Friday, May 1, 2009

Blogging Against Disablism Day: On Wheelchairs and Safety

A photograph of a mangled wheelchair lying on its side in tall prairie grass. The fabric on the wheelchair is a pretty sky blue.
Polk County Sheriff's Department

More BADD posts here.

An unnamed Philadelphia man
Rashad Costley of Waco, Texas
An unnamed San Antonio woman
Boris Farber of Atlanta
Amalie Henrietta Shean of Fayetteville, North Carolina
James Smith of Jackson, Mississippi
David Finley of Kansas City, Missouri
Macelin Azor of Tampa, Florida
Phyllis Seidman of Palo Alto, California
Boris Farber of Atlanta
John Byrd of Escondido, California
Kum Lim of Garden Grove, California
Elizabeth Bansen of St. Louis
Piedad Macedo of Tampa
A New Orleans man
Stephen Mills of Kentucky
Kathleen Perisino of Springfield, Missouri
James Coogan of New Jersey
A Suffolk County, New York, man
An Everett, Washington, man
Hubert McDonald of Fayetteville, North Carolina
A Palo Alto, California woman
Britt Herbert of South Bend, Indiana

What do these wheelchair or scooter users have in common? All of them were killed by drivers of cars, all but one in the past eighteen months, most in the past year. There are many others. Many were killed close to home. Let us not forget the activists, Elias Gutierrez of Fresno, who advocated for curb cuts but who died because they were not put in, and Fred Lupke of Berkeley, forced to use the street rather than sidewalks.

While using a wheelchair or scooter is clearly a risk to us, many of us have been publically singled out and warned that we need to be careful on our wheelchairs or scooters--that we are a danger to others--before entering a public place, have been banned outright even before making an appearance, or have been admitted to a place of public accommodation as a favor or an exception. Wheelie Catholic, Ruth Harrigan, notes that she has been "allowed" to bring her wheelchair into a club with a new policy against bicycles and scooters, William Peace of Bad Cripple describes how he and his mother have been newly banned from entering the paddocks at racetracks, and Katja of Broken Clay writes about the special agreement she mistakenly had to sign to enter an upcoming race in Boulder (people assumed her husband would push her). Mobility scooters are not permitted at one public display we'd like to visit, and use of slingseat manual wheelchairs provided there is required. At stake in each of these cases is the need for "safety" of other people from wheelchairs, or sometimes, in a patronizing way, our own safety (employers used to ban women from certain occupations for their safety; the court cases should set some precedent).

According to the ADA, "Public accommodations must comply with basic nondiscrimination requirements that prohibit exclusion, segregation, and unequal treatment." There are similar laws in some other countries. There is no exception for the perceived hazard of wheelchairs or scooters to other people (and yes, scooters are covered by the ADA, so long as they are within the size requirements, as most are). Yet across the U. S. wheelchair and scooter users are banned from participating in even the family events or fun walks of 5Ks or 10Ks. Here's an example from an agreement race participants must sign:

I also am fully aware that baby strollers, baby joggers, pushed wheelchairs and wheels of any kind (except competitive wheelchairs in a separate race), animals and headphones are strictly prohibited and I agree not to have them on the course.
This is the Tulsa United Way, which presumably helps people with disabilities. I should also point out that baby strollers have been assistive devices to many of us at some points, as it was for me, and that their banning in many public venues has made it impossible for those of us who are physically unable to carry our children to enter. Another example:

In accordance with the guidelines issued by USA Track & Field and Wheelchair Sports USA, only runners, walkers and wheelchair participants will be allowed on the course. The term “wheelchair,” as defined for this event, means push-rim
wheelchairs only. In addition, guidelines for participants in wheelchairs state that all chairs must be equipped with brakes and participants must wear helmets.
This is fine for competitive racing, but all noncompetitive wheelchairs are banned from every event. In addition, this would put unnecessary stipulations on noncompetitive wheelchair participants. Many wheelchairs and scooters contain only a parking brake or an electromagnetic brake that works when controls are not actively pushed, not a dynamic brake.

I have found a couple of variations of this phrasing, which is used as boilerplate language for a large number of races, indicating two major insurance companies are responsible for the prohibitions. Can people participate safely? Sure, and they do in a number of events, in races and walks including those of the Arthritis Foundation, the MS Foundation, the Komen Foundation, United Cerebral Palsy, and many, many others. The difference is that the races sponsored by these organizations more directly assist people with serious illness or disability and allow everyone. They also have liability insurance but choose not to discriminate. It's a choice to discriminate, and insurance company requirements do not excuse it. Ironically, many of the races that do discriminate--many allow only racing wheelchairs and no power wheelchairs or mobility scooters--often benefit orthopedic hospitals, healthcare nonprofits, and other charities. Yet apparently they do not see the hypocrisy of giving money to help people while denying their civil rights, and they have no qualms about blatantly ignoring the law. These races claim that they follow Wheelchair Track and Field rules and U.S. Track and Field Rules prohibiting other kinds of wheelchairs; if they are to ban noncompetitive wheelchairs from noncompetitive events, then they also need to ban noncompeting walkers and runners in noncompetitive events (family runs and walks). For those who ask, "Why participate if you can't compete?," I ask you to consider that most events are fundraisers and often families, coworkers, or large groups of friends participate, often with far more people participating in the noncompetitive portion than the competitive portion. They're fun but also emotionally moving for many who have survived or are coping with an illness or disability. And who wants to be excluded?

As my self-made banner in the margin of my blog says, equal access is a civil right, and we need to continue to assert that right. The problem with rules that ban wheelchairs is the multiplication effect--other people who read the rules will also think that they can ban wheelchairs and scooters from their business for "safety" reasons.

The reality is that pedestrians and vehicles are a danger to us. People climb over our laps or scooters, try to squeeze between us and walls, walk smack in front of us rather than giving us time to slow or showing the same consideration they would toward a bicycle or another pedestrian. They don't give us enough room to make a turn or physically prevent us from backing up by refusing to wait for us to do so and starting a wave of people-traffic behind us. I know most of us have been at a very crowded event or place when people block us from moving at all by standing directly in front of us while we'd like to leave or moving past us, person by person, while cutting in so close (an inch, if that) as to never allow us to move through an exhibit or hallway or exit until someone repeatedly intervenes on our behalf. Yes, wheelchairs and scooters can be dangerous. They can run over feet or smack into people. We have the responsibility to watch and try to be careful, but others also have the responsibility to watch for us and not refuse to yield the right of way as we try to navigate past. At many public venues, scooters or wheelchairs may now be rented, and from personal experience, I'd say such temporary use has its hazards of accidents, to the user unschooled in going down ramps straight, maneuvering tight spaces, or navigating through people. The risk increases with fatigue, as I can say from experience.

As a friend says, it takes three times longer to navigate through a store with a scooter. It takes me two times longer, but I have more experience. People often remark negatively about our speed (when we can finally make some speed!) or make backing-up jokes but never realize that they slow us down and exhaust us (we have less energy not more) by their choices. More gravely, they risk injuring us or hurting us.

Drivers are frequently aggressive, as Ruth notes in a poem of hers, and pedestrians' rudeness or obliviousness can make navigation difficult, as can be seen on videos made by Wheelchair Kamikaze (here and here). The risks cannot be understated, and I know that I place my life in my own hands each time that I load my scooter onto my lift. Even when I'm fortunate to have an access aisle to my right, drivers often "forget" that I am loading even before they enter their car and sometimes come very close to hitting me when they back out before I am finished. Yesterday I had the pleasure at a downtown courthouse with the wheelchair lift being directly in line with the lane of traffic entering a parking garage--because of lack of adequate space in the garage. Drivers often don't understand why we are in the way or that we are forced off sidewalks by a lack of curb cuts, disrepair, objects, or misparked vehicles.

People who use wheelchairs are not only victims of driver inattentiveness or aggressiveness, but they also experience deliberate acts of harassment, up to robbery and murder. While we don't wish to be more vulnerable, people perceive us to be and act upon it.

I have no doubt that we need to raise awareness of the hazards to people in wheelchairs and do more to reduce the number of needless accidents. It is no joke when a wheelchair user ends up attached to the grill of an 18-wheeler or the driver of a firetruck or bus does not even realize that they've hit someone, as in San Antonio. Wheelchair users are also injured and killed because of malfunctioning equipment, ramps too steep, elevator malfunction, and by problems at rail stations that trap wheelchair users (multiple cases).

The issue isn't whether wheelchairs are safe for others; it's whether the world "permits" or, better, welcomes us, whether people impede or intrude upon our freedoms, whether we are segregated out or included.

Sources for names of individuals killed:,0,4175933.story