Saturday, February 28, 2009

I Think I Can, I Think I Might...

I think I may turn in one of the service dog applications this week. Might. Sigh. Admitting a state of permanence is difficult--it really is.

But when I think about all the tasks I could achieve more independently, without guilt from having to seek out someone else just to pick up something or retrieve something I can't but really need, I feel encouraged. I'm sorry to be waffly about this. I'm talking with family about it again too. At times I feel excited, at times scared. I saw a list of physical tasks that service dogs can accomplish and I was able to mentally check off most of the items. I could get out on my own more. Employment is far more feasible.

But most of the decision is a temporal one. Will this last forever? It seems like saying I won't get better and do better; it seems like committing myself to a state of stasis or decline. Yet I could physically do more than I can now with a service dog's help. They can drag laundry baskets to the laundry room and help with removing clothes from the dryer. That would allow me to do more physically, not less. I could then put the laundry in and fold it. Retrieving is a big one. It really is. I could get help getting my own swim bag in and out of the car. Right now I can't. Then I could swim.

Waffle, waffle. I keep considering this idea and it makes sense, but every time I look at it full-on and try to make the commitment I'm like the runaway bride in the Julia Roberts film who gets panicky and runs out the door. I've talked to a number of organizations but have not yet submitted the paperwork.

We've talked about it. I feel like I'm giving in, but it's not quite comparable to other changes we've made. The walking thing? Not the same. Two autumns ago it was clear I couldn't walk well and I mostly had to stay home. By January a scooter or manual wheelchair pushed by someone else was an immediate necessity. (Observation: everyone's calling it a wheelchair now, doctors, nurses, friends and acquaintances--maybe because it's so permanently attached to me?) There was no "giving in," I simply couldn't. Could not. The dog is just not a necessity in the same way but would make a lot much easier. A dog seems to be a bigger commitment. If I didn't need wheels tomorrow, great, so what? I'd be happy to leave them behind (though I'm also happy with them, there's no reason not to be). A service dog is a huge investment of others' time and money and resources, as well as my own, and yes while he or she would still be a welcome member of our family and still be of benefit to me, I feel hesitant since what if I get better?

Here's a list of tasks service dogs do. Scroll to service dogs, not guide dogs:
A lot of the retrieval tasks I need help with, some of the tug tasks, some of the carry tasks, the bracing, plus retrieving my husband, who can't always hear me. Being able to get someone in an emergency is good. Did I mention some guarding against bullying? People like dogs, even if they don't like people with disabilities.

Thinking about this more. The dog means independence to me, being able to do more and not doing without something I need so as not to interrupt others. Or not being able to do something at all out on my own. At the same time, it seems to represent a loss of hope in improvement of my health. Maybe it shouldn't, but it does. I'm still concerned about where all these new health problems will lead, and I mean illness, not just disability. That's what scares me. Maybe it's not so much the fear that I'll get better and have a dog I might not need--I think it's the fear that that I'll get worse, and the dog means that. I guess I just don't have a way of knowing what the future holds or I'd make my decisions from that.

I've long wanted a nickname for the scooter, wheelchair, whatever it is that's attached to my body. Finally came up with it while commenting on Elizabeth's blog. Grace. Graced to have it, graced to have this life where we have so many blessings, graced with a great family and friends, graceful movement in it, a sense of irony/comedy when there's not. Then we don't have to worry about what to call it.

Possible Backup for Air Travel

Media Dis&Dat and Bad Cripple have recently posted on the terrible state of airline service when disability accommodations are needed or when wheelchairs are involved. Wheelchair Dancer's also posted on this topic in the past. The humorist in me wonders if airlines like to see how much mandhandling a wheelchair can take before damage occurs or how long it will take for someone's patience to wear thin when the wheelchair isn't forthcoming.

One possible backup is Scoot Around, a service that will deliver wheelchairs and scooters to the airport when there is damage, at the airlines' expense. The manual wheelchair featured is a hospital clunker, but it's possible they might have others. The availability of such services may not reduce ground crews' willingness to be careful with chairs, but it's good that backups are becoming more available. It might be worth keeping their information handy for an emergency.

For those who can get by with a transport wheelchair at the airport, they can have rented wheelchairs or scooters to be delivered to the hotel. I'd have some concerns about pain and pressure sores from bad seating with a brand I hadn't tried, but that could help with some of the airline hassles. Transportation's always difficult to figure out, of course, whether it's getting an accessible van or trying to get shuttles that will take a wheelchair or scooter (what law?). Without a wheelchair or scooter past the airport, I'd feel vulnerable. But again, at least options are increasing.

Friday, February 27, 2009

Disability and Regular Healthcare

Tonight I found out another mom in our group has ovarian cancer, the same one who had a life-threatening infection. What's in our water here anyway? Everyone's getting gynecological and thyroid cancers lately; my grandfather's cousin also has ovarian cancer.

For both women and men, even if you are having other health problems, please don't skip your regular office visits and report any unusual symptoms. Having a lot of radiology tests that use injectable dyes--CT scans, bone scans, MRIs--and all the x-rays many of us had when we were younger on older equipment increase the chance of cancer. It's unfortunate that having one illness doesn't make people immune from others.

Call around to see if you can find a doctor with a height-adjustable table. For women, some doctors can also do exams from the wheelchair. 39% of doctors have tables that adjust. While a decade ago most mammography machines were not wheelchair accessible, many now are. Again, call in advance. Other radiology equipment can be more problematic in terms of transfers. Changing rooms at many radiology centers are not big enough for wheelchairs or scooters, but restrooms and most radiology rooms except MRI can be used for changing.

For those who don't have insurance, there are low cost clinics that accept people who don't have insurance and have a sliding fee scale. One source for information is:

There aren't that many near us and I imagine they're overcrowded, but it's an additional resource.

Tuesday, February 24, 2009

Hot Flashes, A Morbid Little Almost Poem

in which the title is better than the text.
There's less misery at 100 degrees
in a wood cabin with miniature windows
on a sunny birdless, breezeless day.
Someone explain this welling up
and swelter.

Volleyball Update

I received two emails of support from other parents today and the coach apologized at length; the assistant coach also emailed. I don't understand what the coach did but I think we can go on. One parent says I should have thought about what I said to everyone, which is just weird. What I said was pretty darn gentle--I pointed out why I need the space; my friend says it was just right and merciful to the culprits, who weren't singled out in any way or ticketed. The police could have made over $1500 (presumed first offense) plus about $100 in court fees per person right there.

Monday, February 23, 2009

Failing to Type the Very Bad Words I Am Thinking...

All 5 disability parking spots at the middle school were taken by parents parked illegally tonight. One was our coach. That meant I had to park behind them in the fire lane, blocking them in and risking getting towed. I can't parallel park next to the curb because of the lift.

Yes they know me. A few were new parents who must have thought, "no one disabled would come to volleyball practice." And I did say something about it at the parent meeting and explained why it was needed, though I should not have needed to explain.

Maybe I should have called the police but I didn't since I wanted to get my daughter in and then listen to the meeting. I did call the volleyball association when I got home--the owner has a child who's disabled and will send out an email to all parents (there were two teams in another gym) about the parking, access aisles, and curb cuts, noting that the police will be called next time. She's particularly unhappy about the coach doing that, as am I.

I'm just angry and I feel unwelcome. I feel shaky and teary. The other parents have never made me feel welcome except the ones I already know. They've gawked at me like I'm a freak. Only a few have said hello and tried to engage me in conversation, and one of those isn't participating this semester, or at least I didn't see her.

My friend is driving my daughter home in a bit.

What are people teaching their daughters?

I am angry and hurt.

They might as well put up a sign saying, "You're not welcome here."

Insurance Exec Versus Nonprofit CEO Compensation

The head of Cigna received $22.7 million in compensation in 2007; the head of Aetna received $18.1 million (source).

The CEO of a nonprofit on average makes $150,000 a year.

Who's generally more interested in the well-being of the business's beneficiaries?

For comparative information on nonprofits, see Charity Navigator at

Sunday, February 22, 2009

Jerry Lewis: Well, That Was Short

I haven't watched the Academy Awards in years and years, but couldn't help but turn it on and keep an eye on the television tonight.

Not much was said about people with MD. The video clips included children like Mattie Stepanek, young published poet who passed away a few years ago. He was shown briefly, but no verbal mention or caption reveals who he is. Lewis' ego came out when he referred to his own acts of kindness, though his tone also sounded like a poke at the protesters.

I was afraid that Ben Stiller was making fun of Gov. Paterson, with his dark glasses and his "I don't feel like being funny anymore" statement, but apparently he was making fun of another actor, Joaquin Phoenix.

Thoughts on the Economy

My friend reports there are now families in our small city living out of their cars. For people without extended family support, losing an income and then savings and a home is immediately devastating. Getting another job these days is difficult if not just impossible. Generally homeless families have gravitated toward downtown and other places where there are more social services and support, but there's no room at the inn, so to speak.

One of my kids spent four hours yesterday with his Cub Scout friends collecting canned foods for a food pantry that's empty. His feet hurt so much last night I had to give him Tylenol and a heat pack. They collected 1000 cans/food items, which will help a lot of people though not for as long as in the past.

I am concerned that homelessness is going to increase drastically--you can't get section 8 housing, food stamps, unemployment checks, overnight, and what resources there are already are strained. I think a lot of families may not know about the resources available or apply until it's too late. The local charity that provides toys and clothing for local children received fewer donations this year but had greater need, and coats were swept up as soon as people donated them.

I know families who once shopped at Target who are now shopping at Goodwill; clothing exchanges at churches give them some extra options. Wheelie Catholic reminds us at her blog to keep up donations of clothes and other household items, or to resell them through ebay so that both families save money. Clothing consignment is also a good option, though there often aren't as many for older toddler/preschool boys, who seem to wear them out fully and quickly. Watching for canned foods, fortified cereals, hearty soups and protein foods like tuna, beans, and peanut butter on sale or in bulk and donating them to the food pantry will also help.

I just hope things turn around. My son knows that families really need the food they collected yesterday.

Saturday, February 21, 2009

New Poll

Last week Shiva suggested in the comments of the post on recreational access that businesses be closed until they provide disability access and that ADA noncompliance should be considered criminal rather than civil law. So what do you think?

I put up a poll on the right margin, and you can put additional commets below. Here I mean access that keeps people from entering, conducting their business, participating in an event, or receiving the same service as other patrons. Of course many businesses are not completely accessible and don't comply with all parts of the ADA building codes, or we'd be closing down everything.

Beyond that, what should be the tolerance level and penalty? Lack of restroom access (narrow hallways, tight turns that prohibit wheelchair use)? Lack of room between racks and shelves when there is some maneuverability through main aisles? Parking the company's own trucks in the access aisle or disability parking (as I've seen at two businesses)? Lack of one disability height counter or portion of a counter in a newly constructed business?

NOTE: ADA does not force small business owners to make changes that would place an undue burden on the business owner. But many changes are not expensive.

Friday, February 20, 2009

'80s Flashback

My sister confirms this is the film we had to watch in 5th grade. Whether you've forgotten the film or always wondered how the other half lives, here it is, divided into two parts. It's disturbing on a number of levels (Dr. Frank Frank, MD, abc xyz) and maybe not the most positive way to talk about menstruation. Chiefly, there are too many men in the film, women can handle their own purchases, and we don't get our information on street corners.

Disability and Wrongful Birth?: New Picoult Novel

Some of you may know that one of my possible diagnoses (some doctors adamantly think so, others have other explanations) is osteogenesis imperfecta type I, which causes frequent fractures. Explaining why this isn't definite would take me a long time and bore you; regardless, I have the same medical issues, even down to heart issues, connective tissue issues and bleeding, whether or not I have the diagnosis.

So when I read about Jodi Picoult's novel, about a "wrongful birth" suit when a new baby is born with OI type III (a far more severe form), I was a little alarmed, though I know she's handled some controversial material in the past pretty well. Does this mean that readers of the book, or even of the book reviews, will conclude people with OI should not live? Of course, we all know that people often do selectively abort on the basis of disability alone rather than the mother's circumstances.

But an e-announcement from the Osteogenesis Imperfecta Foundation says that Picoult authored the book thinking of disability issues in general and wanted to address "the status of people with disabilities." I'm certainly interested in seeing how the book handles these themes. A look at Picoult's website indicates that the novel has multiple narrators, indicating that different characters have different perspectives on the issues presented. The text of the OI Foundation announcement:

Osteogenesis imperfecta is an important element in the new novel, Handle with Care, by author Jodi Picoult that will be published March 3, 2009. A main character has OI Type III.

The OI Foundation is pleased that this novel has the potential to make more people aware of OI. The story brings to light the hopes, regrets, uncertainties, stresses and joys that are part of life with OI. The book has a mature theme, a wrongful birth lawsuit, and is noted in publicity as having “explicit subject matter”.

In a radio interview the author stated that this book was not specifically about OI, but about the stresses of raising a child with a disability, the ethical questions involved in wrongful birth lawsuits and the status of people with disabilities in society. She was drawn to OI because the children are intelligent, aware of adults and good problem solvers. She wanted the child in the story to be aware of and to understand what her parents were doing by filing the lawsuit.

An OI Foundation website page has been set up to provide information about OI and some of the topics presented in this book. Informational bookmarks will be distributed at some of the stores holding book signings. For more information about the book see the Jodi Picoult website.

Once you've read the book, feel free to contribute comments to
the online discussion about Handle with Care on the OI Foundation's social networking site, NING. The new discussion will be posted after the book is released on March 3.

Thursday, February 19, 2009

Boston Police Abuse Disability Parking

According to the Boston Globe,

"...violators who use the 11 handicapped-designated spaces in front of Boston Police headquarters are immune from any sanction at all - or even a sidelong glance from the scores of police officers who enter and leave the building every day, according to Globe observations over the past two months.

One repeat scofflaw: the driver of a Toyota Corolla registered to Irene Landry, the city's supervisor of Parking Enforcement, who oversees the 194 parking enforcement officers who write 1.3 million tickets a year..."
What 'cha gonna do when they come for you? Bad boys, bad boys...
Frida is written on location by a disability rights activist. All suspects are considered innocent until proven guilty in a court of law.

The Quiet Days

I remember the difficult mornings my boss used to have at work, the quiet days when a friend or volunteer with whom she'd worked was dying or had passed away. Quiet anger sometimes, sometimes just grief. A decade later, I still remember these women's names, women I hadn't met but whose deaths we observed that reminded us that this work mattered, though that didn't stop death. Even now I remember their names.

After my childbirths, local injections of anesthetics didn't work or wore off too fast and I was sutured without pain relief; in the first, my membranes also ruptured into fine filaments that had to be removed painstakingly by hand. My response aloud was an understated protest that I didn't like this very much. Written in the same vein, I don't like this business of dying young. I don't like it that Elizabeth will die young. That another friend will likely die young. And I begin to understand even more my boss's quiet days.

We who remain will all get through somehow, we always do. We will remember, we will not forget.

Tuesday, February 17, 2009

The Secret: An Ancient Truth or New Deception?

I want to talk about something serious, though it's "only" a popularized book. Rhonda Byrne's The Secret, a book which has been printed in about 40 languages and has sold more copies than any other self-help book printed by Simon and Schuster. It's been a NYT bestseller, there are 12.4 million copies in print, and 3.4 million DVDs have sold (

1. Why Is The Secret Important?

Why is this book important to us whether or not we have read it or subscribe to its philosophy? It affects the way people react to us, how they react to disability and illness. It creates prejudice and discrimination and fosters the opposite of empathy. It blames the victim, whether a child in Rwanda, a woman who's experienced sexual assault, or one of the many people who have lost a job in this economy. It and similar books and films have gained powerful hold over the American consciousness in particular.

Even if you have not heard of the book, you can bet that some negative reactions to you stem from its ideas. You are to blame for illness and disability, say the experts; this line of thinking allows people to tread upon you.

According to Byrne, "illness cannot exist in a body that has harmonious thoughts." (Evidently she doesn't know many people with long term illness or disability; I certainly know people with chronic and serious illness who exemplify harmony, spirituality, and calm.)

2. The Secret and Multilevel Marketing

The premise of The Secret is perhaps summed up best by Bob Proctor, who in the DVD says, "Everything that's coming into your life you are attracting into your life, and it's attracted to you by virtue of the images you are holding in your mind." An excerpt of the film, for those who have time to watch:

How does this relate to disability? According to Proctor (from the book):

You are also inviting illness if you are listening to others talk about their illness. As you listen you are giving all your
thought and focus to illness, and when you give all of your thought to something, you are asking for it. And you certainly are not helping them. You are adding energy to their
illness. If you really want to help the person, change the conversation to good things, if you can, or be on your way. (132)

Wow, just like Jesus taught. If you love someone, walk away. But does Proctor have any credentials in health and healing, alternative medicine, psychology? No. Identified as a "philosopher" in the film, Proctor's credentials are that he authored the book You Were Born Rich and bilked people out of their money through a multilevel marketing scheme.

Not to be deterred by the lack of credentials, Byrne attributes "the secret" to Plato, Shakespeare, Beethoven, Einstein, and other Western geniuses, who apparently hid their wanton wealth- and abundance-seeking ways under the guise of creating philosophy, art, or science.

So if you can't get into a building because the owners never made it accessible? Your fault. Somehow your negative thoughts now kept them from making it accessible 20 years ago.

Slave? Holocaust victim? Should have been more positive, according to this philosophy.

3. Quantum Physics

The Secret proposes that "like attracts like" and we can find such ideas in medicine, as in homeopathy. But The Secret uses "quantum physics" to back up its claims, using magnetism as the scientific principle and seemingly forgetting that basic rule many of us learned in high school physics: magnetism involves a positive and negative force (opposite polarities attract). Nevertheless, this new-and-revised notion of magnetism is what Byrne calls "quantum physics." "Quantum physics" is increasingly cited in alternative medicine and spirituality. While Byrne does include among her experts two physicists with actual academic credentials, their writings are fringe, and I still can't imagine how they would support some of the unscientific assertions she makes.

Another expert, Joe Vidal, looks rather official in his ministerial costume, but his degrees are from unaccredited schools and diploma mills. I could go on.

More importantly, do the "experts" cited in the chapter on illness have any credentials in health or psychology? Only one, and what he says isn't that impressive. The others are speakers and writers of popularized books (one who proudly says she was the worst writer in her high school class), entrepreneurs, and physicists. On this basis, we have millions of people, primarily women, thinking they are to blame for their illnesses--based on what some smug nonthinkers say and one story about a cancer remission. How many studies, peer-reviewed scientific studies, have these "experts" read?

Think an established publishing house will vet credentials? Not when there's this kind of money involved.

4. The Danger: The Secret in the Corporate World

According to an article by Barbara Ehrenreich, companies are now using The Secret:

What do you think happens to ill and disabled employees when their bosses follow this philosophy?

Beyond the workplace, what happens to friendships and to family relationships?

5. The Secret and Blame

We might safely view The Secret as another marketing scheme, but a dangerous one, one that not only bilks people out of their money, but out of their peace of mind and deprives them of needed social support. By encouraging people to avoid those in need and to view them as blameworthy, Byrne effectively masks evil as a good. While there is certainly a lot to be said for positive thinking and for working toward goals, magical thinking does not cure cancer or genetic illnesses or we'd have real evidence rather than the occasional anecdote. Going further, scientists have found that a surprising number of tumors spontaneously remit, but do we have any evidence this is caused by magical thinking? No, and studies suggest otherwise. Chemotherapy and surgery work, counseling does not have an influence on the death rate.

The Secret allows people to smugly self congratulate, seeing good luck as virtue and coincidental difficulties as a personal failing. Would she go far as to blame a child in Rwanda? Yes, she did, in Newsweek in 2007:

If we are in fear, if we're feeling in our lives that we're victims and feeling powerless, then we are on a frequency of attracting those things to us ... totally unconsciously, totally innocently, totally all of those words that are so important.

Such thinking absolves people of responsibility, of helping others and making a difference. I mean, why work in the medical field since you hear people complaining about health all day long? And given this reasoning, why aren't doctors and nurses our sickest population?

Ironically, what makes me feel powerless? Hanging around people who believe The Secret and similar books. What makes me feel supported and loved? Crip friends and those who accept me, illness and disability and all. No one's been made ill from me yet. My husband and children are well, as are my dear friends.

Why do I offer this critique? Not to criticize those who resonate with the positive thinking The Secret suggests and choose to apply it to set goals, but as an offering to those like me, who have accepted blame or guilt from one source or another or been discriminated against because of people's application of such beliefs. In order to accomplish this end, we have to recognize this philosophy for what it is: charlatanism.

Disabled and proud, Frida (newly self-appointed "philosopher" since credentials aren't required)

Other good sources:

Monday, February 16, 2009

Wheelchair for Dance

No Snoopy told me about this wheelchair for dance, the Rolling Dance Wheelchair, which allows movement in more planes than a seat that won't tilt or move with your body. It operates completely hands free (no joystick, no hands on the wheels), and uses the abdominal muscles:

I am still not completely sure how it works--I'd have to try it--but am intrigued by that power option.

Visual description: The wheelchair base looks similar to the base for many power wheelchairs--though its wheels are smaller than many. It has no armrests and the seat will move and tip smoothly. The dancer can use his or her hands without interruption.

One difficulty with scooter motion is its limitations in moving in different planes. The base of this chair is small and sits almost directly under its user, giving more freedom. Dancing's one of the things I miss most--being en pointe is exhilirating (and dangerous). I thought of dancing with the scooter once with my daughter in public but did not--didn't want to embarrass myself, though I thought I could do it. Scooters are a little awkward in that regard.

**The whole chair is attached to the joystick mechanism, which makes me think steering may be so simple as tilting the chair forward or to the side. Though what if you want to lean back and go forward?

Repainting Again

Well, for those who haven't been able to see the blog, this is what I tried to do...except there was less red tone in the brown. Maybe later. It wouldn't work for all browsers and my text was gone, even though I did basic modifications to a blogger template.

Visual description: this template is more colorful than my mostly white one with pink accents. It also shows more text on the screen. It uses a mixture of yellow, green, and brown for margins and for headers to coordinate with a new self-portrait I'd posted of Frida.

Sunday, February 15, 2009


There are only 6 parking spots in front of my children's school, and 3 of them are disability. The side lot for administrators and teachers stays full, of course. Other parents must use side streets and walk a long, long way sometimes.

Friday, at my kids' Valentine's party, someone had used one of the three disability parking spots in front of the school without having a tag or plate (you can put your tag on your dash if you can't reach--none there either). I know that people forget sometimes, but when mothers are loading and unloading materials for parties, chances are....they also park in the access aisles at such times. As a friend told me, I'd never park in the disabled spots in front of the school, but I have parked in those striped areas where they could make extra spots (!). Another friend and I immediately protested and explained--her brother-in-law uses a wheelchair so she's fast on the draw. Apparently people just don't understand. I wish drivers' education and handbooks explained the "why"--just saying "don't" is apparently not enough.

My lift operates at the rear of my vehicle, making parallel parking difficult. Even if I can find a place with some extra room (less than a car length) for the lift, it operates from the right side of the vehicle (which allows me to use access aisles for safety) and I can't easily get the lift in and out of the car when I park against the sidewalk, not unless I park the wrong direction, meaning I will get ticketed and really not a good idea on a one-way street. My kids go to school in the 'hood (really, not joking; the GT school was put there to bring in extra resources and the neighborhood kids included). The sidewalks and streets are in disrepair, slanting to the side, and are not wheelchair navigable.

Yes, I should have got to school earlier, as I usually do, to park and use the lift. Fortunately my husband was with me or I'm not sure I could have attended the kids' parties. He parked in front of the school and helped me out and reparked streets away. After school, one parent with a valid tag had left and my husband reparked. Along comes Illegal Parker, a mom with a young kid and a toddler. Furious, I wheel faster than my husband can catch up over to her and chide her for parking there, letting her know that without my husband's help I could not have gone to my kids' party because of her. She gave me a "so?" reaction, looking me up and down and wondering why I couldn't just wheel further. So I actually had to explain about the lift. Her reaction--just a brief shrug and half-hearted, "I'm sorry," not even a real apology. I still don't think she understood all the places were full and that we hadn't been able to park there earlier.

The fine is up to $1000 for parking illegally in disability parking. Maybe next time I will call the police. Something's really wrong with people like this. I wanted to say to her, as Wheelchair Dancer once said to someone, "what kind of person are you?"

It's true I could have parked in the fire lane myself if I had to, but I think I'd be more likely to be towed for that than she would have been. Anyway, I finally ordered a bunch of tags that explains the problem and the penalty and will keep tape in the car to post them. I know there are bumper stickers people order, but people do sometimes forget tags. I have a great dislike for vandalism and wouldn't want to cause myself problems, though fantasizing about these bumper stickers is really nice.

I'm sure people notice that often all three places are empty. What they fail to notice is sometimes they'e also all full. People self justify because there are "extra spaces," forgetting that the next person can't get in and that when a parking lot is more full, all the disability places will be taken. Very often I can't get one, though in most places I don't have to parallel park and can park elsewhere.

Last week when the older driver in front of me, in a smaller car, parked in a van space and walked into the medical building--I could not use the disability parking place next to him because of the long sidewalk on the right side--I could not use my lift. I truly don't understand why he parked in the van space. I'm not a fan of parking in regular spots in dimly lit parking garages, where the cars whirl by at high speed, kind of like the plastic cars on my kids' old Fisher Price garage.

Saturday, February 14, 2009

How People Feel About Us

The kids have received an invitation for a birthday party that includes miniature golf, bumper cars, and laser tag. I'm not sure if this newly constructed place will adhere to ADA guidelines or not. While looking at photos of the place on the business website and then googling for some additional ADA information from curiosity, I came across a prime example of how people feel about wheelchair accessibility in a short gem by chief disablist Andrew S. Fischer. Overlooking words such as "wheelchair-bound," "the disabled," and "the handicapped," Fischer completely misses how many people use wheelchairs, not just children, but parents and grandparents (and yes, we play miniature golf, or would if we could get in):

In New Jersey not long ago, I went to play miniature golf with my fiancĂ©e. I'll call the place "Golfville." After we'd paid, we discovered that the course consisted of nothing but flat, straight, unchallenging par-2 holes. I immediately complained to the management, and the response was that a NJ law requires any new miniature golf course to be wheelchair accessible! In other words, I mused, only crappy miniature golf courses can now be built – which means no one who isn't handicapped will want to play, effectively killing the pastime – just so a handful of theoretical miniature golf "diehards on wheelchairs" can play. Sounded pretty stupid.

He goes on to say that if making parks accessible was a money maker, business owners would have already made them so. But what Andrew believes is just a myth. Research cited in Slate in fact shows that making recreational places accessible will bring in more money--the economists say this estimate is imprecise, but at a minimum would bring in profits of $4.7 billion. Certainly this is the case for restaurants, where there are often wheelchair users. But would business owners do so because of the profit? No, because they're unaware and often prejudiced, not wanting people to enter their stores and businesses (yes, many of us have had this happen).

But tone, Andrew, tone. I don't think you can convince anyone you actually like people who use wheelchairs, especially given your stereotypes throughout the piece about people's abilities and inclinations. If Andrew S. Fischer actually read the law, he'd have realized that golf courses can have 50% of their courses inaccessible. And accessibility also benefits not just people who use wheelchairs, but people who use strollers and the small kids who play miniature golf too (it's not just adults). The ADA allows both--50% of the course can be more challenging. He'd also realize that this doesn't apply to old golf courses but to new construction--we still can't access old places since they're too small-business to afford modication or it would take a slower-than-molasses lawsuit to get changes when there are often higher priorities. This gives us a few new places to access if one is built.

During spring break almost a year ago, I took my kids to such a place, just the three of us, but had to get help getting the scooter in and out of the building and could not get it back in from the golf course regardless--I had to call my husband to come help (gravity makes out possible though somewhat dangerous, in impossible). The front and back entrances were not ramped, and of course the golf course itself was not wide enough for wheelchairs--though it easily could have been--a few more inches. That the front and back doors were off limit and that there was no curb cut to the cars just hurt--those modifications are nearly cost free. Was I the only wheels user? No, there were two others, teenagers, mostly sticking to the video games indoors. There was no curb cut for the bumper cars, so I couldn't take my children over there or watch them, and one young man just about broke his own back carrying his brother, who had cerebral palsy, over to use a bumper car. Yeah, teenagers with cerebral palsy want to ride too. And a curb cut and an inclined door entrance are cheap modifications. The new boats they'd just built? Inaccessible, no way to even go over to watch them. The party room? Upstairs. For irony, there was an entire row of almost unused disability parking spots that were all empty. I wonder why. With my new scooter, a 150-lb average one that has enough power not to get me tangled up and stopped on a throw rug, there's no way I could get in or out of the building without a ramp (how much did mine for my back step cost?--a whopping $40). In addition, not everyone can transfer out easily. Many power wheelchairs are also far heavier.

Attending any large event or visiting any sizeable place where accessibility is available shows that there are a high number of people who use wheelchairs and scooters and who will attend events, despite our higher cost of living. Concerts, sporting events, fairs, college campuses, grocery stores, even airports--we're everywhere. The places you don't see us--it's because we can't get in. This reinforces the disablist circular reasoning--we don't need wheelchair access because no one in wheelchairs comes here. BECAUSE THEY CAN'T GET IN!

And yet people question our need for access. What I've found is that ADA has given us access to some places, though it's no guarantee for all, and modifications that will put an undue burden on the business owner are not required, which is fair. What places have I not been able to access with my scooter? In one year: a doctor's office, a hospital waiting room, classrooms, parking garages, my hairstylist, a furniture store, an antiques store, a miniature golf course, stores within the mall (because of displays and boxes), the desk section within Ikea (I was told wheelchairs are only allowed on outside aisles), two stationery stores (I tried to buy myself a pen before, I really did), a Scouting event, a kids' carnival, some restaurants, gift shops, the dentist, the aisles in most clothing stores, some restrooms and dressing rooms that are nominally larger but not within legal limits, an educational building at a state park (which could have easily been ramped), the park where I used to take my kids several times weekly, a concert venue, a city park where there are no curb cuts. In one year, not a lifetime. And I've been unable to get into other places because cars parked on the access ramp, sloppily taking up a space and a half. In violation of ADA, scooters were not allowed at an ice show, though wheelchairs were (scooters within the size limit, and most are, are covered). These are examples from the top of my head only--I know there are others. There have been restaurants where I could not go to the restroom, which is an, umm, urgent problem with spinal cord impingement and high bladder pressure. No, I haven't sued these places; it's not worth the stress to me, though I am so tired of this. Many of the modifications, such as not blocking a door with a bookshelf or moving some tables, would be cost free, and others very nearly cost free.

There are three wheels users where my daughter plays her volleyball games. We want to get in, period. I use the swimming pools, fishing piers, sports facilities, and amusement parks he mentions regularly. But sometimes I can't because of lack of access. I would far rather use the swimming pool 3 minutes from my home--newly built--but there's no room for my scooter on the sides (narrow walkway) and the pool's entrance is not particularly accessible. Instead, I must use a pool thirty minutes away. A little planning could have made this pool accessible to more seniors and people with disabilities. There are lots of people who use the Y facilities or the pool I go to who must park their walkers or canes and who need steps into a pool. With an aging population and with more disabilities treatable, more people are going to need access.

Fischer should remember that we're only "wheelchair bound" when the wheelchair can't get in, and before ADA, almost all of the places that are now accessible were not, with the exception of grocery stores so that people could wheel out their carts. (For God's sake, where does this duct-taped wheelchair bound language come from?; not without a consent form). He questions "social integration." We're segregated, as African Americans were in the 1960s. I could not play golf with my children or even be with them, supervise them and make sure no stranger crowded near. Instead, I sat alone and was bullied by a bunch of teenagers who saw me as a good target. At least Rosa Parks could get on the bus, though she experienced serious consequences.

ADA is no guarantee of accessibility, as numerous violations show. A successful lawsuit against Mervyn's doesn't make Kohl's or JCPenney's suddenly make more space between their racks. No one thinks the ADA applies to their business. Everyone seems to think someone else is going to talk them through it and point the way. There are exceptions, and this golf course owner Fischer cites may have been one. Generally, access benefits people on bicycles or using skates, moms and dads with strollers, people with walkers, people who can walk but whose knees are giving out.

ADA is a hope, not a guarantee. Let's also hope people look at facts rather than their prejudices. Even when it comes to investment banking.

I Cut It Off to Buy a Chain for Your Watch

Anyone who's read the O'Henry Christmas story in which a wife cuts and sells her hair for a wig to buy her husband a watch chain and the husband sells his watch to buy his wife a clip for her hair can appreciate that my husband gave me a handcrafted glass hair clip on the day I cut my hair short (ordered before this started).

It does look better--it looks full since my hair springs back into curls when some is cut off. It's not as short as I feared--it touches my shoulders and was longer than I had realized, long. The stylist says it's anesthesia that makes it fall out.

Disability can create such self esteem issues. Whew.

My husband also gave me a nice Levenger pen--a midweight black. I'm one of those people who've never had a good pen. I like gifts like this, that I'll use all the time (and the clip, when my hair's longer in the summer).

Valentine's Day: Sex and Disability

*warning: adult topic, adults only*

In response to a request Dave Hingsburger made of fellow disability bloggers, I agreed to write a post on disability and sexuality/sensuality/love for Valentine's Day.

As I discussed ideas for this particular blog with my husband, I asked him whether people think we have sex or not. I asked this question while we were in the shower together, an intimate moment that maybe others don’t think we have. He said he hadn’t thought of it before. Though I’ve not received the intrusive questions in this regard that some of my friends have, I have been asked whether I can have more children and whether my children were planned, and have had people who didn’t know I have children look shocked when I mention them, shocked because I go about the world sitting down rather than standing up. I’ve been asked by a nurse, in front of my aunt and probably before the waiting room door closed, when my last period was and then made to take a pregnancy test despite telling her that my husband had a vasectomy, which I didn’t really want to discuss in front of my aunt. I did want another child but it’s just not a good idea. Being made to take the test broke my heart.

Does disability interfere with sex? Sure, it can, but that’s an unfair assumption. Juxtaposed with the Viagra culture that celebrates heterosexual missionary sex as not only the norm, but the only valid, nonstigmatized practice, with a culture that values hooking up over relationships, sex when disability is involved engenders creativity, joy, and connection. What many people seem to forget is that even missionary sex is not that difficult, though it’s pretty limiting. There are alternate positions and other possibilities that are more touching, more arousing, more spiritually expansive and that may work better for certain disabilities or pain issues.

It’s often said that our brains are our biggest sex organ. There’s a truth to that, but I think that misses too much and turns sexuality into an internal experience that doesn’t acknowledge the external one. Meeting your lover’s eyes with your own, then dropping them, feeling him or her brush a hand against your skin or capture a curl in the fingertips, hearing the sudden switch in the voice as it becomes softer, getting the inside comment that only the two of you know, these experiences can be sexier than more direct actions. And at the end of the day, when one is tired, there is nothing better than pushing yourself against the warmth of another, just to be close for those hours. Laura Hershey writes that while many people see the “caregiver” role as antithetical to sexuality, the dynamic of the relationship may intensify between two people—not a caregiver and a patient, but two people already loving one another. One only has to look at the poems of Jane Kenyon ("The Sick Wife") for evidence. While the independence of individuals within a relationship is often eroticized, a healthy relationship is dynamic and protection, care, and vulnerability can also be erotic, these three qualities available to both individuals.

What’s at stake for many of us is the desirability of the disabled body, the presumption from others as well as ourselves that we’re not sexual or not “long-term material.” Subject to the gaze as if we were the cinema, we hear people mocking others with disabilities, we’ve been mocked ourselves. Who among us who were disabled as children would ever have seen ourselves as relationship or marriage material? Believing ourselves undesirable: I know it’s a problem, and I learned early to meet the gaze with distrust. I don’t know the answer other than to say people who don’t conform in all kinds of ways find lovers and have beautiful relationships—and no one says anything. Somehow people believe our health, our sexuality, our bodies, are public and therefore mark us with their commentary as if pissing on a fire hydrant. In this regard, I think adults with disabilities need more erotica that includes disability and representations of disability rather than the typical ideals. I have to say I don’t know how to approach this without making disabled bodies more subject to “devotees” or derision.

Desirability aside, what can interfere with sex is denial of our rights. For those receiving care from others or in hospitals, rehab, or nursing homes, others’ perceptions and stigmas rather than the physical body become the barrier to sex, as well as lack of privacy. And let’s not limit sexuality to those in relationships—single people and young people can need privacy and intimacy as well, and that can be denied and people shamed. Anyone who doesn't know the extent to which this is meant has not been entirely physically dependent on someone else for care. Some writers with disabilities have said their doctors were shocked that they have sex. With doctors and other health care practitioners assuming we “don’t” and access to health care limited by physical barriers (exam tables that are too high, rooms that won’t accommodate a wheelchair), birth control may be difficult to obtain, much less information about sex. There’s also the gender divide—information on some spine and neurological conditions, even diabetes, mentions the important warning sign of the inability to become erect or ejaculate in men, but never are the female equivalents mentioned—the inability to become aroused or to orgasm. And yet this parallel experience would occur. Why is women’s sexual function treated as nonessential, an accessory that would not merit alarm if it just disappeared?

I believe that many of us at certain points in our disability have wanted information about how our changing body has affected our sexuality, and granted it will, though that doesn’t mean we’re not having sex. Extreme pain may limit some of us, while others may experience dampened desire because of medications or fatigue. What I think many of us learn is that there are no easy answers—there are options, such as alternate positions or increasing pain medicine in advance (hello, spontaneity), but no easy answers. For some of us, getting sexual satisfaction rather than just having sex is going to create pain—it just is, and it must be planned for or accommodated and mitigated as much as possible. I know what we want to hear is that there’s some delightful way to put it all aside for a while—the aches and pains, the worries. Again, at times disability can limit sex or change its expressions, but so can other life experiences that would inevitably intrude—for example, pregnancy, parenting a young child or caring for a parent, very long work hours, emotional distance. In this way we are no different, only perhaps far more creative and often with richer, more varied and intense experience than ability would allow.

Happy Valentine’s Day to all of you, dear readers.

Friday, February 13, 2009

Lust in Orbit: A Valentine's Preview

I just received a postcard with this great vintage image from Elizabeth--believe it or not, the image is from a real 1960s novel.

(Visual description: sultry blonde woman in lingerie lounges against pillows, one shoe kicked off. Text: Adultery, intrigue, and a peeping tom caused a blast that rocked the base! An explosive novel of a new type of community--a missile testing center...where passions are as volatile as the rockets themselves.)

The stamps and stickers on the back of the card are gorgeous--and include a kitty, a koi looking up toward a mountain, flowers, and butterfly, and a manga character in a kimono with a full moon behind.

The vintage quality and the space theme for some reason reminded me of the MST movies No Snoopy and other friends made me watch, I mean introduced me to, in graduate school. Here are clips of one movie that was turned into an MST film, Santa Claus Conquers the Martians:

(Visual description: men in green leotards and capes wearing odd hats with tubing--supposedly aliens--use a giant robot to kidnap two children and Santa Claus and take them to their home planet, Mars.)

Lust in Orbit was published in 1963 and Santa Claus Conquers the Martians was released in 1964. What was it about the campy '60s that inspired such themes? Visit Donimo's blog, Chronic Holiday, in my links if you want to see some great 1960s alien looking food and advertisements.

Anyway, great postcard. I love campy stuff and pulp novels.

No Oxycodone for People in Colorado

My sister called yesterday with news that people with severe pain in Colorado are having difficulty getting oxycodone. The DEA limits what can be produced and how much is made available, and too many people have filled prescriptions, some abusing the drug by doctor shopping. While I have no doubt and in fact know that people abuse prescription pain pills, this leaves patients with intractable pain--those with cancer, severe spine issues and pain syndromes--in a bind.

Many physicians are understandably reluctant to prescribe such medicines to those who need them because the DEA has wrongly targeted doctors or legitimate prescriptions, tending to assume pain patients are in general addicts. Obviously drug abuse means that some people are getting prescriptions who don't need them but there are also pain patients who have difficulty getting adequate pain control. Perhaps liars are more convincing storytellers or actors than people with true pain.

For those who don't know, there is a database available to all pharmacies that can flag multiple prescriptions from different physicians and help prevent narcotics abuse and reselling of the drug on the street. Of course any such database can lead to some false accusations, as when my rheumatologist turned over my pain management to my surgeon for a week (not oxycodone). Can those who change doctors also be wrongly accused when the refill comes from a different doctor?

In the meantime, people with legitimate needs suffer because of others' abuse and because of quotas on drugs that may not be high enough. Supposedly suppliers have not informed the DEA that a higher quota is needed; but people are unable to fill their prescriptions and the DEA is aware of this.

Kindle Accessiblity Is Illegal?

The Authors Guild is furious with Amazon about Kindle's new voice capability, which provides people with visual limitations (and I presume even page turning limitations, if the voice is continuous) some additional accessibility. There are limitations--people with visual disability would need a sighted person to set up and electronically access the book, which could then be read via audio (update from information at Media Dis-n-Dat).

Such functionality cuts into profits from other audiorecordings and is illegal, they say. Personally, I have to question whether making text accessible via different formats is illegal.

Has the Authors Guild (what, no apostrophe?) not even though about the accessibility function, or do they just not care? While some reviewers say there are limitations in the technology, it certainly offers a world of books that are often unavailable to people with visual limitations. The audio text function can also help people with dyslexia and other learning disabilities. I certainly wouldn't mind using such a feature while I go about other activities or when I have difficulty concentrating on the written word.

I wonder if disability accessibility will come up in what may well become a legal case. To me, it's the primary issue, but I'm not sure Amazon will even see it this way.

Gotta Love It

Someone looking for "what does accessible mean?" arrived at my post "What Does Accessible Mean?". I presumed in writing it that my audience would know what it means and hope my second paragraph made it clear. See, people really do want to know. I've also had people arrive looking for "what is disablism?", though again, I wish my answers were a little clearer.

As I mentioned over at Wheelchair Dancer's this week, someone arrived looking for "disability," "bitterness," and "rudeness." I have to say I have never felt bitter about disability and what I am not able to do or how ill I am. Rudeness: yes, I can be perceived as rude when I assert my civil rights. I'm not sure there's always a way around that the more insistent I have to be and the more stubborn people are. But part of the perception that we're bitter or rude is people projecting their attitude onto us. In addition, they may interfere with our movement or our access or say/ask something prejudiced, and our refusal to play along, no matter how gently or strongly we present ourselves, is going to be misunderstood. In this regard, we're no different from other groups who have rightfully demanded their civil rights. And while often people may be grumpy or have a bad day, people connect that to the disability rather than to the person or their experiences that day--two customers who are brusque, one with a disability and one without, are going to receive different reactions. Too often people wrongfully attribute an emotion or reaction to a disability. Of course disablism is going to make us angry or reactive--but that's the social reaction to us that does so, not the disability. And anger is sometimes appropriate--I have little doubt sometimes that someone would ever do the same thing to another wheelchair user (unless it's an airline).

I do appreciate it when people arrive at my blog with search words for a serious medical condition and terms such as "Louise Hay," wondering the cause for their illness, and hope that they read enough to stop the self blame. Let me say I don't blame Louise Hay the person, but I know that people take the ideas in her books very seriously and too seriously; I've heard them do so.

A lot of people arrive here via MRI phobias. I always feel bad when someone's looking for serious medical information and ends up at humor posts--I hope if someone reads through that it actually helps rather than fuels anxiety.

Thursday, February 12, 2009

Revised Pain Scale

After reading medical blogs, I realized how much some patients exaggerate and recognized that when I say my pain is at a 5, doctors may not be taking my pain seriously. The problem with the pain scale is that people quantify pain in completely different ways. After coming across the "Objective Pain Scale" at Scalpel or Sword, in December I developed the following chart to more accurately discuss what I mean by pain with one of the spine doctors. I'd actually rate my pain lower than Scalpel's scale would, though I tend to be quieter and there's a lot of grunting and low moaning to cope with slow movement at an 7.5 or 8. When I try to avoid passing out, I get really quiet, though that takes effort. I don't complain a lot and can thus surprise nurses that may pain really is that high when I try to move. I'm one of those people who gives birth in near silence too (yeah, without pain meds).

4 and below – can live with it, though can get fatiguing
5 = pain intrudes on consciousness continually but able to do physical tasks for a while, can ignore for a while if distracted, push self more but may regret it later
6 = diminished concentration, unable to do complex intellectual work, unable to do most physical tasks for long, seeking to escape pain
7 = autonomic dysfunction (tachycardia, low bp, presyncope), unable to work or sleep; restless
8 = focused only on coping with pain, vomiting; movement avoided (protest or shriek); have passed out at this point
8.5 = symptoms above + shaking from pain
9 = not sure
10 = imagined equivalent of accidental amputation, severe burns

I have only rated something as a 10 once, briefly, and have never rated something as a 9. With 10 pain, I cannot speak, my body is rigid.

The goal I am working on is getting my pain level at 5 or below for about 6-8 waking hours a day without overmedicating so I can really work more and get my life back in order. And I mean my goal is a pain level of 5 while having a semblance of a life, which is difficult since activity and being out increase the pain and quickly move me toward 7. My pain is often at a 6 much of the time, and I am genuinely not up to the kind of complex, challenging work I used to do at that point. I'm at a 7 for many several evenings a week, and if I'm unlucky during the day as well; I'm occasionally at an 8 for a while, which will cause hair loss later. Blogging and light reading I can do even while at the lower end of 7, though I can't concentrate on anything very technical. These pain levels are with pain medication.

I should note that there is some variation here--I may mostly be at a 6 and gasp sharply if I try to move. I may be able to get myself to a 4 by positioning myself carefully and thus will report a 4, not that the 4 is contingent on remaining still.

I think conversation went better with my own individual pain scale brought in.

The Hardest Part

The hardest part of disability hasn't been the pain or the scooter use or the fear of not knowing where Blood Work Gone Really Wrong (TM) is headed. Nor is it even the dreadful medical procedures and endless medical appointments. All of these things are incredibly difficult, of course. It's the disablism and abandonment by people I knew and trusted, people who refused to show understanding when I needed accommodation. People whom I thought were friends who took more than one step away, who clearly don't want to hear about the last surgery or the next one or how you're wondering this week if you have lupus or a liver disease that will kill you, or if the pain will ever get better. It's not that I need to tell everyone everything. I don't need to, and I don't. But when someone doesn't understand why you can't make it this month because you have to have surgery the day before, why you couldn't make it last month because you were ill from the surgery you needed to have...I'd ask whether they realize I wanted to be there and that it hurt not to be, but I know the answer.

My close friends have not forgotten me and understand my limitations. I know others are busy with their lives and have their own challenges. I don't have expectations that they make special efforts on my behalf since the demands on their own lives are at times overwhelming. But some empathy or understanding instead of judgment for what I want to do but cannot, that I would like. This is what I mean by saying abandoned, when I write someone I worked closely with for long hours to say I can't attend an important event because of surgery, but that I have a gift I want to mail to her and need a new address--and there is only silence.

This also happened on my first day of scooter use, a very long day with a lot of pain. There was a huge arts event a friend had planned with a major speaker, and by the evening I could not go. Could not. Pain an 8 out of 10. The problem, I think, is that people identify with pain, not Pain. Understanding? No.

Wednesday, February 11, 2009

It Girl, The Horror Movie

My hair has covered the shower drain in massive quantity over the past few days. This happened after my spine surgery and other procedures. I'm still not sure if it's from anesthesia or pain, though I do know I have lost hair like that after a fracture, after birth, and after severe sacroiliitis episodes. My husband says he doesn't notice the bald patch I had last summer. It was bad enough then that I started researching wigs or extensions.

My hair had grown to my shoulders again. Time to get it bobbed like I did in last summer, which makes it look more full. I used to have heavy long thick curls. It's a good thing or I'd be very wispy indeed. Self esteem takes such a beating from illness.

Someone told my husband thank you for honoring his marriage commitment. He was shocked and kind of insulted. I just don't think he can see me objectively anymore, and that's probably good.

Isn't this what often happens in the horror movies, the female villain loses all her hair? It really is particularly nightmarish and sickening. I'm afraid to look in the mirror after I get out of the shower.

Antibiotic kicked in for the little one.

Hospitalist With A View

I have joined Hospitalist With A View as one of its many bloggers; this blog has been started by the Happy Hospitalist. He invites perspectives from physicians, nurses, patients, janitors, anyone with a perspective on hospital related care; if you're interested in writing for the blog, let him know.

Increasingly I believe that physicians, nurses, and people with disabilities or chronic/severe illness need to be in better dialogue about medical care and the medical system. Within the blogging world, there seems to be an invisible divide between physician/nursing blogs and the blogs of people with disabilities or chronic illness. Increased communication can only benefit us all.

My son's fever is still high and he's sleeping; I'm not sure this antibiotic is working for strep. He usually responds fast.

Tuesday, February 10, 2009

It's That Time of Year and Self Definition

My husband's taken my son to the urgent care clinic with a fever of 102.5. Either strep or flu, probably strep given the sudden characteristic collapse in early evening. If it's strep, he'll be fine by tomorrow afternoon on an antibiotic. No reason to wait to see the pediatrician, which would take 3 hours from the workday given the office's "speed" and actually cost more (we pay a percent at urgent care, $30 copay at the pediatrician). With the urgent care clinic, you can sign in online and they'll call you when they have space. Keep the sick kid from having to wait among hacking people with other germs, feeling bad. If he has flu, I need on Tamiflu pronto, though my husband says it's not working so well this year.

My aunt's broken ribs from coughing (pertussis?) and my husband's grandmother has been moved from assisted living to the hospital with the flu. I feel terrible for not going to see her but have heard she is hacking and even choking constantly. Having had eight weeks of antibiotic resistant pneumonia myself in just over a year, I am hesitant. Argh.

I am reminded that this week last year, two thirds of my daughter's class at school was absent with a stomach virus and substitutes could not be found. No matter--classes were combined. Class photos were taken that week, and the classes looked tiny and teacherless. Kids were hurling cookies at the Valentine's party.

On a completely unrelated note, I've been thinking about disability and self definition. A few times recently when I've been asked for my employer during registration for a radiology or hospital procedure, and I've said, "none," the clerk has responded, "homemaker" and typed that into the computer. Now one doesn't have to look at me and think of the definition of "homemaker" very long to figure out that I am not up to the physical tasks required. This feels odd to me. While maybe they are seeing beyond the disability and defining me as more than a "none," since people are often defined by their occupations, if I were a man and said, "none," would they not mark me down as unemployed? Or would they mark me down as a homemaker? I do have to say this term was not my favorite even when I was taking care of preschoolers full time. Maybe I've just been taught to overthink words too much.

But here's another one that bothers me. Handicapped. Especially when a couple of times a young man referred to me as "handicapped." When I gently said, "disabled," he more pointedly, in an exaggerated way, said "handicapped" to his coworker. Now at this point gentle turned to anger. While I am typically a calm Frida and realize that people just haven't heard why some terms offend people, for someone to insist on such a term struck me as an attempt at control or letting me know my place (perceived as lower than his). He only stopped when I asked him if he still used racist or outdated terms for different ethnic groups. Why does this word rankle so? It makes me feel as if I'm described as helpless, as completely unable (though I'm not able to be a homemaker). Person first language is obviously best. I do have difficulty understanding the resistance of people to using the descriptors that a minority group prefers. What is their attachment to outdated words?

My husband just called: strep.

What Does Accessible Mean?

Not long ago I was looking at some real estate websites, dreaming of moving to a house where I can access all rooms all the time. And I noticed that on occasion you can find houses that are listed as "accessible," though one person's accessible may not be my accessible. I did find one unexpected surprise. On a few websites where homeowners listed their own houses, almost all of them listed their houses as "accessible." I was at first excited but then disappointed when I quickly discovered that homeowners obviously had no idea what the term means. A small home with a vertical spiral staircase, open between each step, is just not going to be accessible, whether you check the box or not. Many of the staircases would not accept lifts because there's no full wall to attach them to--the bottom of the staircase may be open on both sides.

I always wonder what "accessible" means to people without disabilities. Our newspaper lists wheelchair accessibility for all restaurants reviewed in our metropolitan area. I have yet to see a "no" next to accessibility. This to me is strange and at odds with my experience. I have definitely been to places where I can't get in or where the turns to the restroom are too tight to take wheelchairs. This "yes/no" designation leaves out so much. Is there room in the waiting area for a wheelchair without being in the way? If I'm by myself, can I get to a counter to order and pay? Can I see the counter or what I'm ordering? Is the staff too busy to help me get a tray to a table? Can I sit outside (often, no)? Are the tables too tight to navigate between? Can I get into and out of the restroom without assistance? Can I wash my hands? Is the only seating at high bar tables or at booth tables that are a step up, meaning I can't eat at the table? Most restaurants are a mix. Chipotle counters are too high and I can't see the choices, but restrooms are really good and I can handle the seating; La Madeleine counters are low enough but it can be difficult to get accessible seating, much less have someone help you with coffee, which is out of reach. And it's always a toss-up whether in a regular restaurant the waiter can handle it or is going to be leaning on your chair or avoiding speaking to you.

I'm hesitant to make reservations for new-to-us places because I'm afraid we'll get there and there will be no way to get in or service will be awful or I'll be humiliated by how (in)access is handled. I tend to stick with the known, and we do have places where we know access is good and people are friendly.

I've known some of the newspaper reviewers, and they are very able bodied. While their intent is good in this regard, I have to wonder how different the outcome would be if they nuanced the accessibility statement or allowed people with disabilities to make the decision. I find it ironic at the place where I sometimes get my hair cut that there's a wheelchair sign on the restroom door, ironic because people in wheelchairs can't get in. Ironic that there is a long ramp up to the door in lieu of stairs, but a two inch step at the end of the ramp, at the entrance. I cannot bring in my scooter. The owner, a family friend, said, "oh, I'm sure we can find a way to get the scooter in." Even my husband, who's strong, says no way. While I can disembark from it and he and one or two other men have lifted it before, not everyone can transfer out. This is the difference between the AB/PWD perception--it's just a little step, a small curb, one tight turn. Inaccessible.

At the new GI doctor visit last week, the office was under significant reconstruction. I don't mean redecorating. I mean rooms had been stripped to their shells and walls were torn down. The staff break room had become the waiting room, but the upside was free coffee. The rooms that were still there were fairly accessible and I'm sure the changes will allow for more room in this tight old hospital building. But I did have to note, again, a restroom door with the blue wheelie person--blocked by an exam table so that only a walkie could get through. Truly their rooms are not big enough. The physician apologized for the new construction and we chatted briefly about accessibility. He noted that he recently traveled to England with his wife and 3-year old and a stroller and expressed his surprise at the absolute impossibility to get from Gatwick to Victoria Station without stairs. I nodded, having noticed the same there, and explained inaccessibility in big cities with old infrastructures. It's good that people notice on their own, though what's surprising to many is common experience, here in the U.S., there in his office, there in the parking lot without its curb cuts to the hospital, in the parking garage across the street that you can't access with a wheelchair.

I did suggest to one of the clerks that the new waiting area leave an empty spot for wheelchairs and explained why. She thought that was a really good idea and said she'd mention it to the office manager.

Increasingly, I suspect the term "accessible" is not known to most people in the context in which I use it. If I ask about "accessible parking," people have no idea what I mean. And yet this is what goes on all disability accessible parking. The sign does NOT say "handicapped parking." They do know what "handicapped parking" means.

Saturday, February 7, 2009

Small, Smaller, Smallest

Last night I dreamed I went to Manderley again. No, seriously, last night I dreamed I drove one of these cars. (Visual description: small white bubble mobile, rather futuristic, on an urban street. The door panels are see-through and the rounded windshield is proportionally large.)

Now, while you are busy laughing at the car, let me say that my husband woke up saying, "Noooooo!" (not really). Of course my real nightmare was that he took the Cub Scouts (including mine) rock climbing up a tall cliff. They're too young for that.

For those of you who have always fantasized about owning a Mr. Bean car and parking in impossibly tight spaces, this vehicle is called the Peapod and uses no fuel and produces no emissions. Surprisingly, it holds four people. It has a maximum distance of 30 miles and goes 25 mph. Around here, that means you will be Mowed Down by an SUV roughly 40x that size. I've already learned that people like to run down Saturns and other sedans for no reason other than that they're there, and since people with spine problems are prohibited from playing bumper cars, I no longer partake.
I do have to say I miss driving the green CR-V, which had great mileage and handled mountain roads like a gem. The minivan embarrasses me. It's huge and seems excessively consumerist. Ah, humility. Honestly, I parked our minivan next to a fortwo (link to another bubble mobile, this one allowing for greater distance) once, and the juxtaposition was almost comical. It won't hold three or four people, though, or else it would be called a forthree or a forfour (not a bad name). So it wouldn't work for trekking short distances with kids.

Peapod does have an SUV version, SUV apparently being a relative term, but I doubt it would hold anything other than a manual chair. And I doubt I could get in and out of a Peapod easily because of my back. It would be nice to have something so small and fuel efficient for short trips, but really it's for urban areas. We lived 40 minutes from "civilization" for a short while.


There is a special hell for parents called "sleepover" that involves depriving said parents of needed sleep, waking them up six hours later with percussion instruments and video games, and running around hyped up on sugar, while staying just at the cusp of what's termed an "indoor voice." The dog is happy. One of the mice won't come out.

UPDATE: Now the girls are torturing me with Guitar Hero World Tour renditions of "Eye of the Tiger" (ref. PE teacher Carol's favorite song, a symbol of her attempt to apply evolutionary principles to the elementary school classroom). I'm a quiet person. My nerves are feeling frazzled. The boys have found how good my husband's speakers sound for

Friday, February 6, 2009

Woman with X

Yesterday I read the story of Sally Ann Heath, who plays basketball and has cerebral palsy, at Media-dis-n-Dat (news story was originally published in the Augusta Chronicle). I was struck by the difference between Sally's statement:

"There's something out there for everybody," Sally Ann said. "Never give up,"
and her coach's:

"A lot of kids see the wheelchair as an obstacle and not an opportunity," she said, but Sally Ann demonstrates an important lesson. "If you put your mind to it, nothing is impossible."
What Sally and her coach say are quite different. Not everything is possible with disability, and people don't tend to see their wheelchairs as obstacles. But Sally's right (go, Sally)--there is something for everyone, and we shouldn't give up.

NOTE: I want to point out this is not BA Haller's article, but just one she has found. Her blog is one of the grooviest on the disability web.

Continually frustrated by stereotypes and disablism and inspired by ADA mad-libs (go read!) at New Mobility, I designed a generic article about an individual with disability. Jane's story is a composite of many I have read in this vein in a variety of mainstream publications and newspapers. Journalists, save yourself time, borrow someone else's cliches:

Woman with ____x________ Has (opposite of x) (e.g., heart transplant/big heart; wheelchair/great strides; blindness/great vision)

For those who know her, Jane proves that living with _________ doesn’t have to mean giving up your dreams. While some people with ___________ might give up on life or become depressed, Jane keeps going, fueled by her passion for__________.

The ____-year old Jane, who has had __________ since she was _________, was told by doctors that she would never __________(again). She has been proving them wrong ever since. Her spirit of (heavy metal—circle steel, gold, iron) is indomitable as she battles/fights/wages war with __________. (Summary of medical history here)_________________________________________________________________________________________________________________________________________________________________________________________________________________________

“She really inspires me,” says __________. “She shows us every day that anything you want to do, you can do. You just have to really try.” Jane, who has not been able to _________ since ________, says that her hard work toward __________ has paid off.

(Cute childhood anecdote)____________________________________________________________________________________________________________________________

Jane indeed proves that you can do _____________ despite being (disablist phrase). "She never complains," says _________. Working ____ hours a day, disability is never an excuse for Jane. "She definitely doesn’t carry a chip on her shoulder because of it. She seems just like everyone else, only ________," ________ said.

Jane, who expresses the desire to open a support group for people with _________, says she experiences the same joys, triumphs, and griefs, as everyone else who _____________. When ___________, one of her friends, __________, she jumped in to help.

Jane is truly one of those triumphant spirits who has overcome her disability, demonstrating to others with _________ the power of a positive mindset. “I’ll never be able to ________,” says Jane, “but I can ___________.”

I suggest sending a copy of "Woman with X" to journalists who write with such formulas.

Wednesday, February 4, 2009


A baby's independence induces joy whether she uses a wheelchair or walks. In the end, does it matter how we move? Who could deny this child her rights?

Visual description: A toddler explores her parents' kitchen and living room in her new wheelchair, spending some time exploring drawers that were off limits before, learning how to roll towards her parents and reach a favorite book.


The woman I know who has had two cancers since this summer now has bone lesions. Worry, worry, worry... She has daughters, and I worry for them, too.

Someone today told me today that he thinks I'll be out of the scooter someday. His manner towards me was kind and welcoming without being condescending. What he says is true, I may very well be. But what I wish I said, the idea I hope to hold onto for next time someone says this, is that I'm fine with it either way. Whatever God has in store, there's meaning and beauty that can be found on wheels. I could tell he was someone who would agree if I'd said it. Yes, I want to work long hours when I want, hike long distances, use ballet as my exercise. I really do. But if I don't, well, I want to do as much as I can regardless.

I don't understand why I am sick with so many different things. I just don't. The doctor yesterday said a lot stems from the connective tissue issues, and that includes the bleeding problem (it's a cause of it). The bone fragility and fractures and hypermobility, the weird lab results on so many fronts (lupus/being ANA positive is a connective tissue issue), maybe even my eye scarring (irregularities that are stable and don't interfere with vision). I don't know about the spinal arthritis, how that fits in, if it's something separate or if it's part of the same puzzle. Sometimes I feel that I'm in the middle of a bamboo forest sorting my way through fragile stems, but there's no way to see the bigger picture or find my way out. The forest goes on and on. The diagnoses change and shift. It's difficult to deal with.

I just have a bad blistering allergy to antibiotic, no incisional infection. No complaints there. Worried about my friend.

Tuesday, February 3, 2009

Dog Wants Cupcakes, Darth Vader Has a Bun in the Oven

Anyone who's had a dog of the high strung border collie/aussie type can surely appreciate this video:

Visual description: Australian shepherd, commanded to stay away from a platter of yummy cupcakes with sprinkles, stands unmoving, staring, and unblinking, looking both wistful and tortured at the goodies. He's good and neither touches the cupcakes nor the delightful sprinkles. Nor does he blink. Nor move, or apparently breathe enough to expand his ribs, except the nostrils show some slight sign of respiration, proving dog has not been transmogrified into a statue.

My dog likes chicken this much, even more than pulling my husband or kids for a walk like he's training for the Iditarod.

Cupcake doggy discovered at Cake Wrecks. Cake Wrecks has cakes both wondrous and disastrous. Find of the week:

Visual description: picture of cake with Darth Vader holding a small baby. The words "It's a Girl!" appear among pastel planets and swirls. And sprinkles (don't tell the doggy). The cake is artistically done, unlike some Cake Wrecks. It's just, well, odd.

Life Carries On

My uncle told my grandparents that he wants to come live with "Frida and Frida's hubby" when the time comes (there are several options). There's been some waffling as different possibilities give him different opportunities and change what his life is like. But we really need to get papers signed for guardianship (and backups too--he may have a long life); my grandparents don't want to think about these issues so much, but they're very old and not in good health. I'm not sure what this means in terms of moving flexibility--he likes our state--but it's good there are backups and he's welcome anywhere we go. (For those who aren't regular readers, he's cognitively disabled.)

My grandparents also know about my husband's job and called to offer to pay our mortgage for several months if needed while he finds work. His company is going out of business and we're not sure if it will be purchased, as we hope--he's looking for other work to be safe. While I am fine with selling our home and moving to a smaller home or even an accessible apartment if needed, my greatest fear in this market is that we wouldn't be able to sell our home in a couple of months and would lose every penny we have put into it (a lot--we'll own it in 7 years). I know mortgage companies will often negotiate now so people can have a few months; after the first 60 days we'd have problems. And yes, I'd be looking for work too, despite the pain level.

This is not something I'd ever ask of anyone, so it brought tears to my eyes, just to have that sense of security.

Pain medicine just is not effective enough tonight. I would say it's not doing anything, but it is way better with it. Just really not enough. Can't concentrate.

An Interesting Medical Opportunity, Or Quack Quack

I have to throw in the "quack quack" to horrify my pretty reserved best friend, who pretends he doesn't know what any of this means. Apparently once you become anemic, having ablation or hysterectomy is not optional because with consistent anemia all kinds of things can go wonky elsewhere. I've talked the doctor into letting me get the anemia testing a few more times first; getting all these procedures is really stressful, physically as well as emotionally. No, she's not joking about doing this; I've been avoiding it for years. We'll see. Personally, I feel really attached to my uterus, against me as it sometimes is.

Apparently, I'm now officially old, old enough to get my boobies run over by two cold metal plates every year. At least my doctor warms up the mean cold duck lips (ref. The Vagina Monologues); can't they warm up sterile factory parts before they crush your tender spots? The recommendation has changed to age 40, and I'm a long way from 40. The doctors keep nagging me though. Maybe they want a copy of the recommendations that say baseline at age 40?

I have to go back to the surgeon since I have an incisional infection (itches! blistered rash). Great. Apparently there's some kind of reporting process to keep infections to a minimum in hospital, including suture type and I don't remember what else.

What worries me is lack of access to basic and needed care for women with disabilities, for people without insurance. I've done some research on this and will post sometime. Personally, I really wanted to postpone this visit since I'm dealing with a lot, but with two friends with cervical cancer in the past year, one with an additional cancer, I tolerate my duty. I've reached the age where I've started getting cancer/illness announcements from people rather than wedding invitations and birth announcements.

Monday, February 2, 2009

Fortune Cookie Fun?

Might I suggest a new genre, lolz fortune cookies, kind of like lol cats. Here is the gem in the fortune cookie I just opened:
An interesting medical opportunity is in your new future.


Groundhog Day

I'm not sure if the groundhog saw his shadow today since I slept late this morning. My pain's often worse in the early morning (spondylitis) plus it's hard to get going until pain and heart med kick in. I usually get a second wind late evening and seem to do best then. Anyone else get these strange patterns?

I talked to one of my three best friends on the phone for an hour yesterday and feel so much better. Sometimes I just need to talk to my "crip" friends--they get it. We talked about aspects of spirituality and disability, the assistance dog possibility, scooter use (she had one for years), and various medical-social issues. I also emailed with Yanub and feel better.

My friend emailed me a long document (eight pages single spaced) she had written about spirit and religion and disability a while back, for others who had requested it. I find that I am in 100% agreement with what she says; even if I were an atheist I'd agree with the conclusions she makes. We both grew up Methodist, have adopted some "new age" spiritual beliefs, and have thoughts in common with other religions, but we both decry the misuse of religion against people with disabilities. The experience of reading what she wrote was beautiful, such a positive force among the negative social responses I sometimes receive.

Her assistance dog was trained by CCI. We talked about how I'd need greater assistance if I return to employment part- or full-time or am out more on my own. I expressed some of my concerns, and she said that there are people far less disabled than I who use assistance dogs, and advised that I get on the waiting list.

We talked about her home health care issues and I worried some, knowing Minna's situation and Elizabeth's and her own. Her regular caregiver has had to return to full-time employment with insurance. My friend's now had 45 caregivers in and out of her home in the past year, and not all of them come from responsible backgrounds. One asked her to pay her cab fare and another was calling in sick to another job so she could get double pay. Nevertheless, she's found women employees who have come from very difficult circumstances and are transforming their lives and making better decisions after some hard mistakes. She teaches a class on spirituality from her home and hopes to open another class for some of these women, who are interested and need the company and support. Many of them don't have family support. Some of them would like to mentor other women who have had similarly difficult experiences, sharing resources, ideas, and support.